Beyond the Red Door

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beyond the red door

Janet Shaw

A SUE HINES BOOK

ALLEN & UNWIN

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First published in 2004 Copyright text © Janet Shaw 2004 All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage or retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10% of this book, whichever is greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given remuneration to Copyright Agency Limited (CAL) under the Act. A Sue Hines Book Allen & Unwin Pty Ltd 83 Alexander Street Crows Nest NSW 2065 Australia Phone: (61 2) 8425 0100 Fax: (61 2) 9906 2218 Email: [email protected] Web: www.allenandunwin.com National Library of Australia Cataloguing-in-publication entry: Shaw, Janet, 1966–. Beyond the red door. ISBN 1 74114 319 5. 1. Shaw, Janet, 1966–. 2. Women cyclists – Australia – Biography. 3. Blind athletes – Australia – Biography. 4. Adoptees – Biography. I. Title. 796.62092 Cover design by Kate Mitchell Design Cover photograph (foreground) by Greg Elms Cover photograph (background) from author’s collection Photograph page (i) by Bruce Hunt Text design and typesetting by Pauline Haas Edited by Jo Jarrah Printed in Australia by Griffin Press 10–9–8–7–6–5–4–3–2–1

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CONTENTS

* WAITING AND WATCHING ......................................1 THE COLOURS OF MEMORIES ................................17 THE RED DOOR ........................................................48 INVISIBLE SCARS ......................................................74 STRONG BONDS ......................................................110 RUNNING OUT OF TIME ........................................125 SECRETS ....................................................................144 SIMPLE WISHES ......................................................159 KEEPING AHEAD OF THE SHADOW ....................175 IN THE BLOOD ........................................................184 TIME BOMB ..............................................................199 UNSHAKEABLE DEMONS ......................................216 SEEING THROUGH WALLS ....................................247

EPILOGUE : MY SECOND LIFE ..............................265 ACKNOWLEDGEMENTS ........................................280

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CHAPTER 1

WAITING AND WATCHING

* In some ways it’s probably a lucky thing that I was born with cancer. If the tumours had started to grow later in my life — say at age three or four, or even eight or nine — I would have been aware of the many things that happened to me, as well as being witness to the effects on my parents. I would have watched the blackness creep stealthily into my world as the tumours multiplied in my right eye, robbing it of all vision. I would have sensed the shock and great sadness of my parents when the diagnosis was made. I would have stood by helplessly as my mother grew thinner and thinner and my father more distracted and worried. Maybe I would have shared their fear of death. As it was, the only thing I might have been aware of as a thirteen month old baby was the frustration of bumping into invisible objects on my right while crawling around on the floor. I was born with a rare form of cancer called retinoblastoma. It is a hereditary condition, caused by the mutation

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of the retinoblastoma gene. Such a mutation triggers the growth of cancer cells on one or both retinas of the eyes. Being an adopted child, it was impossible for the doctors to say why it had happened, but they decided it was just a freak of nature, a spontaneous mutation. The disease had infiltrated both my eyes. My right eye was riddled with tumours and beyond saving, and my left had four tumours. To confirm the diagnosis that the lesions were indeed malignant, and therefore lifethreatening, my right eye had to be removed and a biopsy performed. Although this eye was totally blind, the impact of losing it was not lessened for my parents. I would receive my first of a series of artificial eyes once the socket had healed, but would have to wear a patch in the meantime. But there was no time for waiting, no time for coming to terms with it. If the tumours were malignant rather than benign, it was only a short distance for them to invade my optic nerve and my brain. They were. Because the cancer was so advanced, the doctors held little hope for my survival. A decision had to be made quickly about how to treat the tumours in my remaining eye. The simplest solution would be to remove it as well. But such a traumatic procedure was felt to be pointless and cruel if the cancer had spread and the predicted outcome was right. And there was just a slim chance, a small speck of hope, that the cancer might be beaten. With that hope as a focus, an intensive course of radiotherapy was proposed so that not only my life, but also maybe some of my vision, might be saved. Even then my chances of survival would only be about one in four.

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Finding out that I had retinoblastoma naturally was a great shock to my parents. But for my mother, an unnerving sense of deja vu was aroused. Before I was born, a story on the television news had caught her attention. The story had been about a child with this rare cancer, retinoblastoma. It had touched her so deeply, triggering such a strong desire to know more, that she had taken several trips to the library to do some research. No other story about children’s medical conditions had ever caused her to respond this way. Another blessing — albeit in a strange form — of having cancer at such a young age is that I thankfully have no memory of the six weeks of radiotherapy treatment that followed. For my parents, there was no escape; the memory would haunt them for years. I was given ten days to recover from the surgery before the daily treatment began. The threat that hovers in the shadow of cancer does not allow time for the niceties of life, the traditions of Christmas and New Year. I was discharged from Perth’s Princess Margaret Hospital in time to spend Christmas Day at home with my family, but that’s where the celebrations ended. My first treatment session was scheduled for Boxing Day 1967. The linear accelerator, the machine that would direct the radiation waves at my tumours, was at another hospital, Sir Charles Gairdner Hospital. My grandparents, who lived close by, took care of my two older brothers and my sister while my parents drove me to the hospital. The scene in the waiting room sent a fresh wave of shock through my mother. The room was full of parents nursing unusually quiet babies or

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placating restless young children. She could not stop the tears that began to trickle down her cheeks. A young woman cuddling a sleeping baby in a nearby chair noticed my mother’s distress and asked her if she was all right. ‘No,’ she sobbed, ‘my baby has cancer.’ Without hesitating, the woman replied, ‘That’s what everyone here has.’ The starkness of these words surprised my mother. She suddenly realised she was not alone, that others were experiencing the same agonies, that others had found the strength and courage to keep going. It was at this time that my stubborn streak really showed itself. The radiotherapy could only be administered while I was asleep, my head needing to be kept still as the rays homed in on their target. A strong sleeping drug was given to me by a nurse, and the waiting began. My parents took it in turns to pace up and down the corridor with me in their arms, expecting the drug to take effect quickly. But no-one had read me the rules, and if they had I would have fought them anyway. In my desperate efforts to fend off the sandman, I bit hard into my mother’s unprotected arms, leaving nasty red teeth marks which would later develop into bruises. There was no way I was going to give in. The sleeping drug’s dosage was increased, but to no avail. Sighing and shaking their heads, the doctors told my parents to take me home. No treatment could happen that day. Try again tomorrow, they said. Once safely in the car, lulled by the gentle motion as we drove home, I fell blissfully asleep. Turning the car around, my parents made a dash back to the

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hospital. They were in luck: they had not lost their place in the queue. The first treatment went ahead as planned. I repeated this performance every time I went to hospital for my radiotherapy. Even with the sleeping drug — now adult strength — being given to me at home before the trek to the hospital, I still refused to comply. My mother’s arms became more bruised with my ongoing struggle and my parents’ stress levels grew steadily. My determination to stay awake only made it harder for them to endure the long weeks of radiotherapy, and to witness its effects — the vomiting, the circular red patches on my cheeks. By the end of each weekend, the effects of the drugs and the radiation itself would have worn off enough to allow some normality to return to our lives. But this was short-lived. On Monday mornings, the pattern would begin again as I was doped up for the next round of treatment. At the end of six weeks the treatment was ceased. Then came the hardest part of all, the waiting and watching. The maximum amount of radiotherapy that a baby can handle had been given to me, with a little extra thrown in in desperation. If the tumours didn’t respond, no more radiotherapy could be administered safely. Some other treatment that was even more radical would have to be tried. At first the tumours showed no sign of change. As the days passed plans were made to combat them by way of a radium implant. But before my parents could completely absorb this new information and prepare themselves for the added risks, things started to happen. All but one of the tumours began to shrink.

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My parents’ emotions swung between excitement, hope and fear as the waiting and watching went on. The unchanged tumour stayed stubbornly the same size while the others continued to grow smaller and smaller. As time wore on and the biggest tumour showed no signs of change, the specialists reluctantly made plans to use a radium implant. Almost on cue, as though giving in to pressure, the last tumour began to shrink. And it didn’t stop. It gradually kept reducing in size until it disappeared. My eye was now clear of any tumours. But the cancer had not left it unscathed: my vision had been affected and I did not have full sight in that eye. Being free of cancer didn’t mean I was cured: it didn’t mean that everyone could relax, forget about the threat and go back to normal life. Cancer is like an invisible bomb that can go off at any time. It would be five years before I could be given the all clear, five years before the hollow echo of the bomb’s ticking no longer haunted my parents. The waiting and watching continued. My eye specialist kept me under close observation, with regular check-ups every three weeks, then six weeks, three months and finally six months. These examinations to monitor the situation should have been short and simple: a brief visit to the eye specialist’s rooms where a bright light and magnifying lens would allow him to study my retina where the tumours had been. But the doll made of silver bottle tops that tinkled merrily when shaken could not distract me from the light that hovered like a blinding monster in front of my screwed-up eye. My struggles to get away from the monster made it impossible for my doctor to see anything. The outcome was always the same: the

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sympathetic shaking of heads, yet another hospital admission booked for an examination under anaesthetic, and as I grew old enough to understand, the shedding of my tears. And so my introduction to hospitals, doctors, nurses and anaesthetics began at an early age. As the saying goes, first impressions are lasting, and my first impressions of hospital certainly have left a clear imprint on my mind. The memory of one stay is particularly vivid. On that occasion, not even my Raggedy-Ann doll, the one specially chosen from all my other dolls and animals to come with me, could provide any comfort. The bed was hard, its crackly white sheets distinctly stiff and unfriendly. The fair-haired, skinny little girl with soulful eyes that I was at the time surveyed the scene around her little desert island. Both sides of the long rectangular room that seemed to have no beginning or end were lined with beds like mine. In each bed was a child, whimpering, screaming or just lying quietly. White uniforms bustled to-and-fro, some of them pushing rattling steel trolleys, others carrying clipboards. I looked down at the grey floor, the familiar tile pattern, and tried not to cry. I knew the routine, what lay ahead. Nothing had changed. The bath had been just as big and unwelcoming as I remembered it from last time, and the time before . . . I huddled miserably in one corner while the compulsory wash took place. Afterwards, I had to hold up the hospital pyjamas, so flimsy and baggy, as I walked to the scales. I hated those cold metal scales. Sitting on them made me feel like a handful of mince being weighed at the butcher’s. The walk back to my bed always seemed to take an eternity. Fear

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stopped me from looking at the other children as I passed their beds. Instead I concentrated on the long legs which strode purposefully in front of me, the white shoes matching the crisp white skirt. The unforgettable taste of the antiseptic thermometer revolted me as always. ‘Try not to bite it,’ the nurse would chant. But I never quite succeeded in keeping the thin glass tube away from my teeth. The task was made even harder when the nurse wandered off, forgetting to come back. ‘Oh, have you still got that!’ was the surprised exclamation when she eventually did return. I hugged my Raggedy-Ann doll tightly and bit my lip. But the tears came anyway. I had cried when my mother left only minutes before. And now the total isolation was closing in, the sea around my little island growing wilder and more vast. Loneliness, fear and dread were my only companions. My dislike of hospitals not only haunted my waking hours, but also troubled me when I was asleep. A recurring dream, or rather nightmare, I had between admissions was a regular and terrifying visitor. In the dream a filtered light, its source unknown, illuminated the room just enough for me to see. Everything looked normal: the chairs, wall-hangings and below-bench cupboards were in the right place. But there was something strange, something terrifyingly different. Something was making my heart beat louder and louder, tightening my throat so that I could not scream. The door to my parents’ bedroom stood at the far end of the room. It was the middle of the night. They would be asleep, but a burning urge told me to reach them, now!

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I took two tentative steps into the room, my attention flitting between the bedroom door and the room, trying to find the thing that threatened me. Then I saw them. Long narrow cupboards, nearly touching the ceiling, stood against the red brick walls around the room. Why hadn’t I noticed them before? Suddenly, the door of one began to open. A white figure slowly launched forward from its hiding place and toppled face down onto the floor. It was a mummy, its bandages wrapped tightly around its stiff body. Stepping back in horror, my mouth gaping in a silent scream, I stared at the motionless figure only a few feet away. A squeaking sound from behind had me spinning around in time to see a second white figure falling from another narrow cupboard. Terror froze my legs: I could not run. My eyes searched desperately for some means of escape. Another two doors opened, silently this time, their white-clad occupants tumbling lifelessly to the ground. I was trapped, immobilised by my fear, encircled by the still figures on the floor. My parents’ bedroom door was beyond reach. No-one could help me now. My parents made the connection between my nightmare and my time in hospital. The tumbling white-clad figures in my dream were probably the masked and gowned surgeons and anaesthetists who would suddenly appear very close up in my fuzzy pre-medicated world when I was rolled into the operating theatre. Although their garments were green, they were certainly wrapped up like mummies. Or the demons of my nightmare could have been the memory of the nurses who had to attend closely to my eye.

*

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‘Which eye is it, honey?’ I opened my eyes. Two nurses were bending over me, one holding a small bottle of eye drops. The antiseptic smell of the hospital drifted into my nostrils. I stared at the nurses, too frightened to speak. There was no protest when the eye drops were dripped into both eyes, the nurses being fooled by my lifelike right eye whose pupil would not respond to the dilating effects of the drops. Then came the pink medicine. It was handed to me so casually, like being passed the milk to put on my cereal. But drinking it was no easy feat. It looked as though it should have tasted like strawberries, but this was an illusion. My hand lifted the plastic tumbler reluctantly to my lips, the sickly sweet smell of its contents causing my teeth to grit, my throat to close up. The nurse waiting for me to swallow the sedative didn’t know how it tasted, how much I hated it. Finally, it was gone. Now I longed for some water to take the awful taste from my mouth. But water was not allowed. The wait for the dreaded trolley ride had begun. Too quickly, the trolley arrived, accompanied by two cheerful nurses and an orderly. Gently I was lifted onto the thin hard board on wheels, my small body filling its entire width. A belt was fastened over my stomach for security. As I was wheeled off the ward, my hands gripped the sides of the trolley in anticipation. The journey across the car park wasn’t so bad, although the nurses complained of the chilly morning air. But when they entered the next building, I instinctively intensified my grip. ‘It’ll be a bit bumpy here,’ warned the nurse on my left.

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The trolley jolted violently as they started down the stairwell. Every bump made my heart beat more rapidly. The presence of the nurses and the safety belt gave me no sense of comfort. At any moment I felt I would be catapulted over the side of the trolley onto the hard concrete steps. The jolting stopped . . . it was the landing. With difficulty, the trolley was manoeuvred around the bend to begin the second descent. My hands ached. The bumping and shaking continued. The bottom of the stairs seemed so far away. At last the trolley was stilled and bright lights slid into view above me. A figure dressed in green robes appeared at my side. His voice was gentle and kind, a familiar voice. It belonged to the man who had promised me the story about a black cat. I smiled faintly at him as he picked up my left wrist and examined it closely. I could see other green figures around me, some close, some further away. ‘You’ll just feel a small prick, like a mosquito bite.’ I felt the stinging prick that was nothing like a mosquito. I did not hear the story about the black cat.

* As I neared the end of the five years of regular admissions, I discovered a different side to hospital life. I found out that it could be fun. It happened during one stay when I was put in a small room which contained only five beds. One wall of this room had a large window which looked out into the huge ward where I usually stayed. For the first time, I got to know the

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other children around me. They had names. They were just like any other group of kids I knew. Billy was in the bed next to me. He and I were going to theatre in the morning. It was night-time. All the lights in our room and the adjoining ward had been switched off. But instead of being in bed, Billy and I, along with the three other kids in the room, were squashed together on the bed beneath the large window, our own private viewing platform. ‘Wow! Something’s going on,’ Billy gasped. We all peered towards the far end of the ward where a single light shone down on a group of people clustered around a bed. ‘They’re ambulance men,’ someone else reported excitedly. I leaned further forward, straining to see the drama which was too far away for me. Then came the warning cry: ‘A nurse is coming! Quick!’ Like mice fleeing from an approaching cat, we scuttled for our beds. Billy took a running jump, landed on his bed, rolled and fell off the other side. The beam from the nurse’s torch found him before he could pick himself up from the floor. She wasn’t amused and told Billy off for not resting before his operation the next morning. After she’d gone, none of us could sleep for laughing. In the morning, Billy and I were dressed in our gowns for theatre. It was nearing the time for our pre-medications and we’d been told we were not allowed to get out of bed. Billy had a sudden urge to go to the toilet.

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‘I’ll get you a bottle,’ the nurse stated firmly. Billy hung his head as she disappeared momentarily before returning with a vase-like container. ‘I can’t use that,’ Billy mumbled, eyes still downcast. One of the other girls began to giggle.‘It’s all right, Billy, we won’t watch.’ She turned her face away, still giggling. ‘I won’t watch either, Billy,’ I tried to assure him, finding it hard not to laugh too. ‘There you go, Billy,’ the nurse said cheerfully, ‘the girls won’t look. Now come on, let’s get this over with.’ The Billy who had established himself as a leader and clown found it hard to regain his dignity after that. The only time I went to hospital for something other than my regular check-ups was when I had my tonsils and adenoids out. I was about five years old and well accustomed to hospital routine. Only this time, it was a different hospital — St John of God Hospital in Subiaco. And the small ward I was in was full of boys. Boys frightened me when there were more of them than girls in a group. I surveyed the room from my hiding place beneath the blankets, with only my nose poking out. To my dismay I quickly learned that I was the only girl. The boys were rowdy, jumping around on their beds and making a lot of noise. Luckily, I had my side of the room to myself: their beds lined the two adjacent walls. I tried to think myself invisible in case they noticed me, a perfect victim for their teasing. But there was one big problem. The only bathroom was opposite my bed, about twenty feet away. To get to it, I would

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have to walk past the boys. There was no other way. I would be in their direct line of fire. I had kept my vigil for some time. Now I was busting. I lay curled up in a tight ball, my eyes fixed desperately on the Mickey Mouse emblem highlighted by a golden light on the bathroom door. Maybe if I waited long enough the boys would fall asleep. But as the minutes passed, they seemed to get even more excited. Mickey Mouse wasn’t getting any closer. I couldn’t will it to move. It was time to give up. The next morning the nurse’s cheerfulness turned to surprise as she pulled back my bedclothes. ‘Oh! How did your bed get wet’ she asked. I looked sheepishly at her. ‘I don’t know. Maybe my doll did it.’ Juicy, my talking doll, had been the one specially selected out of all my toys to accompany me to hospital this time. I thought she wouldn’t mind taking the blame. The boys weren’t the only ones I shunned while in St John’s. The lady who brought the soup around at lunchtime was a large woman with hard features and not much to say. She regarded me with cold eyes after slapping down the bowl, waiting impatiently for me to start eating. I dared not spill a drop or leave any in the bowl for fear of what she might say or do. One lunchtime I really didn’t want any soup, and I didn’t want to see the soup lady. I heard her heavy footsteps approaching my bed as I lay on my side pretending to be asleep. The bowl thudded onto my tray. Silence. I could feel the cold eyes boring into my face. Then a large hand grabbed my cheek and pinched hard.

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‘Hey, come on. Wake up! You gotta eat.’ I shut my eyes even tighter. The pinching continued, the voice insisting that I wake up. When the soup lady realised I couldn’t be roused from my sleep, she trudged off, muttering to herself. My stubbornness came out in patches during my hospital visits. Most of the time the nurses referred to me as ‘good as gold’. I don’t know what they called me when I was difficult. Breakfast was a time I looked forward to because I loved my Weet-Bix. I always had two in a bowl with cold milk and sugar. Too much milk made them soggy and inedible, and of course they had to be cut up in a certain way. I remember stopping a nurse as she prepared to chop up my precious cereal. ‘You can’t do it right,’ I told her. She looked at me in surprise, spoon poised in mid air. ‘You tell me how to do it then, or would you like to do it?’ she asked patiently. ‘No, only Mum can do it.’ The look on my face must have told her that there would be no further negotiations. Needless to say, my mother wasn’t very impressed when she arrived half an hour later to chop up my Weet-Bix. There was another occasion when I thought Mum had forgotten to come and get me. I was sure she had told me she would be there at ten am. As the minutes ticked on past ten, my face grew longer. A phone call was made to my home. My mother was coming at one pm, not ten am.

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I refused to accept this information. In my mind, I had been abandoned. Pulling the blanket up under my chin, I closed my eyes, shutting out the world. An hour or so later I was woken by a bustle of activity around my bed. Opening my eyes, I saw the blood-soaked pillow case that had caused the stir. Nosebleeds were not unusual for me, rather they were a part of my life. But this one certainly attracted some attention. And it nearly delayed my discharge from hospital. Each time I went into hospital, the nurses would smile at me and say, ‘This is old hat for you, isn’t it?’ I never knew how to answer because, yes, it was old hat to me, but that didn’t make it pleasant or any easier. So it was a great relief to hear the magical words from my parents: I didn’t have to go to hospital anymore. The doctors were confident that my cancer would not return. There would be no doctors or nurses or antiseptic smells of sterile hospital wards, at least for a few years. Life became normal again.

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CHAPTER 2

THE COLOURS OF MEMORIES

* ‘Tell me again. Tell me about how you got me.’ I snuggle down further under the warm blankets, wriggling my toes in anticipation. Mum settles herself on the bed. ‘Well, we got a phone call from the hospital ...’ I imagine a nurse in a white uniform speaking excitedly on the phone. ‘... telling us that they had a baby girl.’ ‘And when you got there, there was a whole room full of babies.’ I close my eyes, visualising a huge ward lined with cots holding sleeping babies. ‘Yes, that’s right. We already had two boys and a girl, so we decided that we’d like another little girl.’ Mum smooths my hair with a loving hand. ‘And then?’ I am impatient to get to my favourite part of the story.

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‘And then we saw you. You were lying in your cot fast asleep sucking your bottom lip. We knew straightaway that you were the one for us.’ ‘I saw you coming,’ I pipe up quickly, ‘and I chose you as my parents.’ A warm feeling flows through me. I feel so special. In my view, I had been chosen from a whole ward of babies just waiting to be adopted. I had not been rejected for something better. I was special, and my parents were special because I had picked them. Mum smiles. Her finger begins the slow, gentle tracing motion around my eyes, nose and mouth. Sighing deeply, I sink into the soft mattress.

* Having four children in the 1960s and 1970s didn’t make my family different from any other. What made us stand out was that all four children were adopted. My mother met my father in 1956 in New Zealand, her first stop on a trip around the world. She had graduated two years previously as a physiotherapist in Perth and had worked for a few months at Hollywood Repatriation Hospital. She never got further than New Zealand. My father, a Kiwi-born geologist of English parents, distracted her from her travels. My mother’s parents, back in Perth, didn’t meet my father before the marriage, but probably knew him quite well through my mother’s regular letters. When they received news of their daughter’s engagement eighteen months after she’d left

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Perth, an urgent letter was despatched to my father from my grandfather, a journalist, in his usual humorous style. October 21st 1957 Dear Geoffrey, I have a complaint. Ever since the day some twenty odd years ago when I was disturbed from a state of reasonable comfort and complacency to be apprised of the fact that I had become the apprehensive father of a daughter I have sought compensation in a wistful vision of the future. This was that one day some importunate young man would approach me and say: ‘Sir, I come to seek the hand of your daughter in marriage.’ And I, gold watch chain stretched across my waistcoat, would gently stroke my luxuriant moustache and, having bought a cigar for the occasion, would blow cigar smoke in his face and enquire haughtily: ‘Young man, what are your prospects? Can you keep my daughter in the circumstances to which she has been accustomed?’ Many things, over the years, have conspired to modify and finally destroy this vision. For one thing I never managed to acquire a gold watch chain. Then I found myself quite incapable of growing any sort of luxuriant moustache. The whole notion became rather ramshackle when my daughter indicated that the

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circumstances to which she had been accustomed were not quite her cup of tea and proceeded to accumulate a set of circumstances of her own. Then, as a final blow to a father’s fondest hope came her calm (well, perhaps calm is not quite the word) announcement of her engagement to some chap we do not know at all, except by medium of some not displeasing photographs and a lot of descriptive matter which we must suspect to be tinged — however faintly — with bias in his favour. Oh well, if I am not to be allowed to act out my big scene, I can at least hope that circumstances will bring us close enough together some time to drift tobacco smoke in one another’s faces over a quiet noggin. If all else fails, now that Sputnik is with us, perhaps we may look to the day when, by some suitable means of speedy elevation, we can join overseas friends for a session in some satellite pub for an hour or so as it trundles around the earth and, at the end of it, drop off again at our respective home places in time for dinner. Meanwhile, we can only say that if you and New Zealand are bringing Jill the happiness expressed in her letters to us, we are well content. Best wishes (in which my wife joins) to you, Frank Hoffmann

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Children were something my parents wanted dearly but couldn’t have naturally. My father had contracted mumps in his early adult years, resulting in infertility. At that time — the late 1950s and early 1960s — babies were freely available for adoption. My father came from a family of six children, my mother from a family of three, and so somehow they settled on four: two boys and two girls. It was with great pride that my parents drove home from the hospital with their first child, my brother Mark. The one-eighth Maori blood that flowed through his veins was, if anything, a bonus. A phone call from the Social Services just thirteen months later brought both surprise and delight with my brother John. Mark’s natural parents had given birth to another boy. For reasons that were not disclosed they could not keep this child, but hoped he could be placed with his brother. My parents were only too pleased to accept the offer and keep the two brothers together. Three and a half years later my sister, Susan, also partMaori, joined the family. The Shaws then packed their bags and boarded a boat to Australia where my father was to take up a position at the Western Australian Museum in Perth. Everything was working out for my parents. They had found a spacious house in Nedlands only a mile from my mother’s parents, and my father had a good job. But there was one more thing that needed to be done. The Shaw family was not yet complete. And that’s when the order for me was placed. As though on cue, I arrived exactly nine months later. My grandmother from New Zealand was visiting at the time, and so I took her name, Lucy, for my middle name. My

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first name, Janet, was John’s choice. ‘What should we call your new little sister?’ my parents had asked him shortly after my arrival on the scene. John had thought hard, then said seriously, inspired by his latest story book, ‘I think we should call her Janet.’ He had just finished reading Janet and John. I am just glad he hadn’t been reading Dick and Dora or Fluff and Nip. I’ve always thought that my parents had to be pretty special people to adopt four children from different backgrounds: two part-Maori blood brothers, one part-Maori daughter and one white Australian daughter. What made them even more special was their honesty. From a very early age we all knew that we were adopted. There was no pretence, no stigma, no secrecy. One day they hoped to discover our pasts and meet our natural parents to reassure them that we were safe and well loved. As a child, being adopted didn’t bother me. In fact I was proud of it. I felt as though I had something that my friends could never have, like being born with magical powers. Telling people that I was adopted, that we were all adopted, gave me a thrill. My sister and I spent a lot of time together because of the closeness in our ages, and the difference in our skin colour often raised people’s curiosity. Susan always stayed strangely silent when it was discovered that we were sisters and the inevitable statement followed: ‘You don’t look like sisters.’ The story of our origins, and my sister’s Maori background, always sprang from my lips without any hesitation. Susan never said anything. Only in my adult years would I discover that my

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fleeting wish to trade my fair skin and blonde hair for my sister’s beautiful olive complexion and dark hair had been Susan’s constant dream ever since she was a child. In her mind, the painting that hung in our family room of the old Maori warrior, his dark skin wrinkled and covered in tattoos, posed a constant threat to her destiny. For years she would do everything possible to change the colour of her hair, using lemon juice, peroxide, tints and colours. To ward off the wrinkles she would resort to any lotions, creams and face packs that promised youth. With the boys being so much older and moving in different circles, I never knew what they said, if anything, to their friends about being adopted. The closest I got to hearing John talk about his background was one summer’s day down at the beach when I was about seven. One of his friends approached me to ask me something. I thought he said: ‘Is John really a doctor?’ So stunned was I by such a ridiculous claim that I told him of course this was not true. Moments later, John came running up to me, his face showing real fury. Why had I told his friend that he wasn’t adopted, he wanted to know. John had been really hurt by my mistake. Like Susan, John also developed an aversion to his skin colour as he entered his teenage years. No words were spoken, no emotions shown. Instead, he spent hours in the shower scrubbing his skin with the harsh bristles of a scrubbing brush. We couldn’t help but hear the awful noise, and see his reddened skin when he eventually emerged. During my younger years I was too naive to interpret accurately the sympathetic looks and all-knowing ahs from

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some adults after they learned I was adopted. As I grew up, I would have to defend myself from the assumptions they made, that my parents had adopted me out of pity. The ‘poor little child with a disability who was rejected’ attitude would infuriate me and force out the story about my cancer which had been discovered months after my adoption. Apart from these episodes that are unique to adopted families, we grew up like any other family, like any other brothers and sisters who love and hate, compete with and support one another, and generally get up to mischief. It was Mark who always took advantage of my innocence. ‘Hey, Janet! Look at that!’ Mark said one day when we were on an outing. He was sitting on my left, his finger pointing at something through the right-hand window of our little Austin Freeway. Dad was at the wheel as we rolled along a dirt road somewhere in the country. Mark, Sue and I had the back seat. John had been banished to the spot between my parents. We all loathed the middle front seat. Known as the punishment seat, it was used for anyone who played up on long journeys. I turned my head to look where Mark was pointing, hoping that I might see what had excited him. ‘Look at what?’ I asked, returning my attention to the ice-cream cone that I was slowly devouring. With dismay and rage, I saw that the perfectly smooth dome of ice-cream that I’d been painstakingly maintaining was now a jagged crater. Mark’s grinning mouth was ringed with the evidence. I never failed to fall for this trick. Mark always had to be the best or the winner, and he

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used whatever means he could to achieve this. Despite the obvious advantages he had over me — being older, stronger, faster and cleverer, not to mention being able to see — Mark loved to cheat. When we had running races down the side of our house, he insisted on being the one to say ‘go!’, which gave him a head start. Card games found him constantly changing his position on the floor so that he could sneak a look at my hand. This wasn’t hard to do: rather than keeping my cards in a tight fan to conceal them from my opponent, I had to spread them out so that I could see them clearly. But even when I was winning the game, Mark had a habit of suddenly changing the rules. There were never any allowances made for my inexperience and lack of coordination when playing ball games like French cricket, either. Mark would leap about ecstatically yelling ‘out!’ when my bat swung back in preparation to whack the ball, only to send the bails flying. I never got a second chance. The chessboard helped to level out the odds when eventually I mastered the game. The word ‘checkmate’ was always Mark’s until, with patience and perseverance, it became my jubilant cry. Believing my first win was a fluke, Mark set up another game, and then another, with the results still in my favour. Mark ended our chess matches then and there, his excuse being that I took too long to make my moves. But to win at any other game, I had to outsmart him somehow. And there was one game where my poor vision worked to my advantage: table tennis. Table tennis was Mark’s forte. He revelled in taking each of us on, even Mum and Dad, thrashing us every time. He used

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to smash the ping-pong ball so hard and fast that sometimes you’d hear it hit the table rather than see it. I couldn’t match him on this score, but I could confuse him. When it was my turn to serve, I’d stare hard at one corner of his end of the table, pretending to make sure I had it in my sights. Then quickly I’d serve the ball to the opposite and unguarded corner, fooling Mark with my little charade. This won me a few points, but it didn’t take him long to figure me out. John was the clown of the family, always loving to play the larrikin. Before setting out on a country drive one fine day, Dad decided to film our preparation for departure with his treasured movie camera. John thought our family needed expanding. Waving to the camera, he climbed into the car, exited through the far door and rejoined the queue filing into the back seat, making five Shaw children. The grin on his face was as large then as it always was whenever the camera was turned his way. More often than not the grin was accompanied by rolling eyes, wildly waving hands and the start of a mock fight with Mark which always ended with John the winner and Mark protesting loudly. No-one but John knew how to make me really scream. His love of the sea and the many creatures that lived there was not shared by me. Although fishing was a pastime I enjoyed, it was only the adrenalin rush when reeling in a catch that kept me going back. Everything else about fishing had me wrinkling up my nose and retreating: the smelly bucket laden with bulging-eyed fish or scrabbling crabs, and the final stage of filleting which left heads littering the kitchen bench. Even the necessary tasks that went with the sport made me squeamish.

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It was either Dad or John who came to my rescue, baiting my hook and removing the poor struggling victim from the end of my line. This glaring weakness of mine became John’s advantage. John was cunning about exploiting my abhorrence of all things slimy and odorous to achieve the best results. The place where the torment occurred was always our house: this offered a confined space and limited means of escape. The objects of terror were chosen carefully: harmless fish like the blowfish and cobbler would only produce a short shriek, so it was the octopus with its long groping tentacles and big suckers, or the smelly blue manna crab with huge snapping claws that pursued me around the house at breakneck speed. I only stopped screaming when finally cornered. Then all my energy went into pleading with John to take the creature away. Any attempt to avoid this horrible game failed. Whenever I heard my brother return home from a fishing trip, I’d pretend to be totally absorbed in the television or a book. I dared not look at him when he entered the room, hoping desperately that he wouldn’t notice me. When a crab landed nonchalantly in my lap, I knew my ploy had not worked. Although both boys treated me like any other sister, handing out the usual amount of rough and tumble, it was John who showed the most sensitivity to my vision problems. In very subtle ways he’d provide me with protection and show his concern. After visits to the eye specialist, he’d ask my parents what had happened, if there had been any changes. So discreet was John in revealing this side of himself that only in my later years did I really become aware of it, and was very touched.

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Being the baby of the family, I was forever trying to grow up more quickly than is physically possible, to catch up with my brothers and sister. I always felt as though I lived in their shadow, often being referred to as ‘so-and-so’s little sister’ instead of ‘Janet’. When I had just turned four I would proudly tell everyone that I was nearly five. It therefore took an eternity to get to five, the magical age that would make me nearly six. Being nearly six meant that I could start school and be in the same league as my siblings. The local primary school held a myriad of wonders that I couldn’t wait to discover. There were folk dances every year where the students dressed in fancy costumes and danced the exhilarating Mexican hat dance; there were show-and-tell days at which a menagerie of guinea-pigs, coloured mice, lizards and an ant farm took centre stage to be poked and prodded by many inquisitive hands; there were brightly covered exercise books boasting pages of written work speckled with gold stars and lots of red ticks; and there were school camps into the countryside where the children could canoe or climb mountains. But my transition to primary school was not a smooth one. And the mysteries, the enchantment our local school held, slipped away from my eager hands when the school year began. On the first day of term one, I did not join my sister in the walk to school. Instead, Mum drove me to a school a few suburbs away. This school was different to most primary schools; it had a specific classroom designed to assess children with vision impairments. In this classroom the future direction of my education would be determined, the options being mainstream or special education.

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Thomas Street School looked like any other primary school to me. It had a large undercover area in front of a row of classrooms where the students assembled each morning before class. Our classroom was no different to the others: groups of wooden desks with lift-up lids and grooves for pens and pencils were dotted around the room in front of a large blackboard which displayed colourful chalk drawings and my teacher’s name. Outside, the playground was an area of bitumen with monkey-bars, climbing frames and a sandpit. Being in such a normal setting and having lessons that were fun and interesting made me forget that I was not at my local school. I loved drawing, colouring in and working with numbers. And I loved my teacher, Ms Cargeeg. On my first day she successfully distracted me from dwelling on any feelings of uncertainty by getting me involved in setting up the room. Her manner was so friendly and relaxed, so soothing, that I didn’t notice Mum quietly leaving. After that day I looked forward to being picked up and taken to school each day by the special school bus just so that I could be in Ms Cargeeg’s class. In my short time at Thomas Street School I only got into trouble once. The boy sitting next to me had drawn an elaborate picture of a helicopter from a simple dot-to-dot puzzle. Feeling sorry for him, I rubbed it out, replacing his complex drawing with the simple five-point star that the numbers indicated. Ms Cargeeg would have been none the wiser if another boy in our group hadn’t told on me. I received a short lecture and a board was placed between our desks so that we could not see each other’s work.

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After six months at this school, the assessment was complete. My vision was too good for a special school. I was allowed to enrol in my local primary school. Settling into Nedlands Primary School wasn’t hard at all. My teacher knew me immediately as Mark, John and Susan’s little sister. She was a very kind lady, making me feel welcome right from the start. I knew some of my classmates from kindergarten and soon got to know others. Diddles became my nickname. It was the same as my sister’s, so I got called Little Diddles when she was around. At last, I was where I had always wanted to be. Although I had spent the previous six months in a classroom for the vision impaired, it never really occurred to me that I had an eyesight problem. And yet I knew I was a bit different because of having an artificial eye. This was something to be flaunted. ‘I’m not allowed to look at the sun because I’ve got a glass eye,’ I proudly told a friend soon after arriving at Nedlands Primary. ‘Oh, and my doctor told me I might go blind if I do.’ This was an afterthought. Somewhere along the way I’d become confused about the real reason for not gazing at the sun’s bright rays. It was my good eye that would have been permanently damaged by the burning ultraviolet rays, not my artificial eye. My glass eye and I had a love−hate relationship. In general I accepted it as part of me and never really noticed it, but when it needed readjusting or cleaning, I refused to take part. Cleaning, especially, was traumatic. Mum had to use a sterilised paperclip to lever it out. The paperclip became my

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enemy, threatening to inflict pain as its cold, unyielding end wedged itself beneath my eye. When, after a long battle, the eye lay staring up at me from a bowl of water, the cotton wool torture began. The sensation of the damp cotton wool ball in the empty socket made me shudder. To me, the socket felt bottomless and I was frightened that the cotton wool ball might disappear if Mum accidentally dropped it. My eye also caused some concern for the teachers at Nedlands. It had a habit of turning so that most of the white showed and I appeared to be either cross-eyed or peering to the far right. At these times I was taken straight to the sick bay where the teachers hovered around me wringing their hands and not daring to touch the delinquent eye. I sat on the bed calmly telling them that only Mum could get it back into place. Mum was summoned to the school on many occasions to fix my eye after it had mysteriously turned or when it had sand in it from the sandpit. It only took her a few seconds to roll it back into its right place or to wipe the grains of sand away, freeing me to return to the classroom. She asked me once if I was doing it deliberately to which, of course, I pleaded my innocence. After that, there were fewer and fewer incidents. The fact that I couldn’t read the blackboard from a distance did not make me feel any different from my classmates. At Thomas Street School I had simply walked up to the board, memorised what was on it, returned to my desk and copied it down. And so I continued this method at Nedlands, taking my chair with me when I needed to read things at the top of the board. Sometimes I could copy work from my neighbour. And when I began to struggle with my reading,

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I simply used a hand-held magnifying glass. To me, there was nothing special, nothing different, about me. My years at Nedlands were my best school years. In the classroom I took great pride in presenting my work neatly to attract the colourful stamps, stars and big red ticks that seemed to leap around the page in great excitement. As I learned to write and put sentences together, I created fanciful stories about danger and heroism involving me and my classmates in thrilling adventures which always had happy endings. Not only did I love writing stories, I also enjoyed listening to favourites like Blinky Bill and The Magic Faraway Tree. One teacher who read to us had such a quiet voice that no-one dared breathe while she was speaking. But she didn’t fascinate me as much as the teacher with the beehive hair. I used to stare at the pile of thick black hair that looked as though it would touch the ceiling when she stood up, and wonder if anything lived in it. Outside the classroom, the world was ours. There were three large ovals for us to run around on, play chasey or practise gymnastics. The bush strip down one side of the school offered many places for playing house or make-believe with fairies and pirates. On the bitumen marked out in white paint were hopscotch games and square-ball courts. Sports day, a day I really looked forward to, was every Friday afternoon. Softball and netball were my favourite games. I loved the feeling of excitement and power as my bat connected with the pitched ball, sending it flying out safely between the fielders. Netball was even better. As I usually held the position of centre, it was up to me to leap high at the ball toss and snatch the ball away from the outstretched hands of

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my opponent. My vision presented no problems in these games, but in other ball games (like leader-ball and tunnelball) it was typical for me to have the front position in the lineup. In the case of leader-ball, I think it was more a duty-of-care issue for the teachers than a concern about my distance vision. In this game, a softball is thrown to the first person who, on catching it, runs right around the others before resuming his or her place. The ball is then thrown back to the pitcher and the thrower bobs down to allow the next in line to receive the ball. Being at the front, there was no risk of me dropping the ball onto anyone. Tunnel ball didn’t involve any throwing or catching, just sending the ball through the tunnel made by the team’s spread legs. So my taking the first position wasn’t necessary, but it had become a habit. The yearly school sports carnival brought both excitement and anxiety. I loved running races: my friends and I practised for weeks before the big event. But I dreaded the starter’s pistol, not because it was a gun, but because of the loud noise it made. My ears were very sensitive and loud noises hurt them. To try to muffle the sharp cracking noise of the pistol, I would cover my ears with my hands while poised awkwardly at the starting line, every muscle tensed for the leap forward. Thankfully, this strange standing-start position didn’t affect my running ability. My sports tunic was always decorated with a blue or red satin ribbon. The unshakeable belief that I was just like everybody else received much support from my parents, but there were times when this determination gave them grey hairs. Like any other child, I had dreamed about owning a bike long before the

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dream came true on my eighth birthday. For what seemed like years, my tricycle and I had trailed after my brothers and sister on their fancy two-wheelers. Like graceful swans, they glided around the front yard while the awkward duckling lumbered after them. Getting a real bike meant that I’d never be left behind again. Learning to ride had taken no time at all, so eager was I to fly. The tree in our neighbour’s front yard marked the official practice area. The surrounding grass quickly became worn as I steered my unsteady circles around the tree. I had chosen that tree for a reason: it had a thick sturdy trunk which I could grab to stop me from falling off when I got the wobbles. Mum became used to detaching me and the bike from the tree. But the many scratches and bruises never put me off. When the wobbles stopped and I didn’t need the tree anymore, I was set free. But there was one restriction. Mum’s tone was firm when she laid down the rule that I must never ride my bike on the road. My protests about my sister being allowed to take her bike on the road were quickly dismissed. ‘Your sister can see the cars coming. You can’t. It’s too dangerous. You must stay on the footpath.’ It wasn’t often that Mum was strict with me, so I didn’t dare disobey her. My bike and I travelled for miles along the footpaths in our neighbourhood. To ease my frustration at being constrained, Mum gave me the task of fetching the milk and newspaper from the corner store each afternoon. I revelled in the responsibility. The first leg of the journey was the best. My bike and I would race down the hill and fly around the corner without braking. On the way back, I’d gather up speed

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on the flat to get a headstart up the hill. As I had to cross the road to get to our house, Mum and I had a deal that I’d ring my bell to signal my return. She would then come out and help me back across the road. Little did I know then that my love of speed on a bike would take centre stage in the future. Deep down, though, I longed for the freedom my sister enjoyed. When I went riding with her, she sailed along the road while I stuck to the footpath, bumping up and down kerbs, my annoyance growing. ‘It’s not fair. I’m sick of this,’ I had complained bitterly one day when out of sight of the house. ‘You have all the fun.’ She stopped, thought for a moment, then turned to me. ‘Okay. If you stay right behind me and do exactly what I say, you can come on the road. But don’t tell Mum.’ My sister had always been like a guardian angel to me. She filled in the details that my poor vision caused me to miss in a subtle way, never intruding on my strong wish to do things on my own. When I received a bingo set for my fifth birthday, she quickly stopped me from putting the lifesaver-like counters into my mouth. During hunts for clues at Easter, she always let me find my own clues and eggs even though she could see them well before I could. At school she looked out for me in the playground. If anyone was picking on me, all she had to do was walk up behind me and the bullying would stop. She was tall, pretty and very popular. Her presence was enough. When I wasn’t with my friends, she walked with me to and from school so that I wouldn’t have to cross the roads on my own. She hadn’t been asked or told to do this; it was just in her nature to be caring. My respect for her was so great that I’d

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fetch her purple Malvern Star from the bike shed after school and have it ready for her ride home. My bike and I joined my sister and her purple Malvern Star on the roads from then on, with my sister keeping a close eye on me and telling me what to do. Once I’d had a taste of this new freedom, I wanted much more. But one day I got more than I bargained for when I was out and about on my own. The white car waiting at the stop sign looked familiar. I pushed down harder on the pedals of my beloved gold-painted bike which was struggling up the steep hill. Oscar, my pink rubber ostrich, sat importantly in the centre of the handlebars, his pointed yellow beak indicating our intended direction. A blast from a car horn brought my attention back to the white car. It hadn’t moved, even though there wasn’t any traffic. I was closer by then, close enough to recognise it. ‘Hi!’ I called out, waving gaily, trying not to show the utter fear and horror that had suddenly risen in my stomach. This wasn’t the first time I’d ridden on the road by myself, but I knew it would be the last. My mother had her window wound down, but no words came from her mouth. Sensing her surprise and rage, I wobbled my way across the road and up the opposite kerb to the footpath where I should have been. The car accelerated through the intersection and down the street to our house. I followed slowly, my spirits dragging along behind me like a heavy black cloud. My secret was out. I reached our house and turned into the driveway where the white car now stood in ominous silence. Gone were

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the happy memories of my many adventures on the road with my sister. The confidence I gained from these rides had propelled me to start doing it on my own. I couldn’t see what was wrong with this, so long as I was very careful. Miserably, I wondered how I could convince Mum of my safety on the road. Mum’s raised voice reached my ears as I quietly entered the house. I tiptoed towards her bedroom. The door was half shut, but I could hear my father’s voice. He was home early from work. It was too much. I couldn’t face Mum, let alone both of them. I had never seen my mother so angry. I bolted. Footsteps approached my room. Curling up into a tighter ball under my bed, I began to sob. Light filtered into my dark space as the bedspread was lifted and my father’s face appeared. ‘Hey, what’s the matter, love?’ His voice was gentle and kind. Stunned, I stared at him. Where was the blasting I knew I deserved? ‘I’m sorry . . . I shouldn’t have . . . Mum’s so . . .’ My sobbing got louder, the words coming out in spasms. ‘It’s all right. Come on out and we’ll fix things up. How about we go to Hungry Jacks for tea tonight?’ Crawling out from my little haven, I took the proffered hankie and snuggled up into Dad’s arms.

* Dad, the enthusiastic camper in our family, was forever planning camping trips for the school holidays. Our favourite

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haunts were the South-West — Denmark, Albany and White Sands — because there was so much to do there. The long summer days would be filled with swimming, surfing, rolling down sand dunes, rock climbing, fishing, horse riding and playing on the campground’s trampolines. Dad had all the camping gear we needed: a trailer that converted into a tent; a big blue tent that my brothers, sister and I slept in; a gas stove and lantern; old pots and pans, bowls and cutlery; and canvas covered stools and a small card table for our meals and games. Getting to the camping ground was the worst part, the long hours in the car bringing groans, grizzles and arguments. But usually something exciting happened to relieve the boredom, like the time a wheel fell off the trailer and bounced down the road behind us. Then it was all hands to try and catch it. Our one big holiday out of Australia together was a trip to New Zealand. Anyone else visiting New Zealand would come away with wonderful memories of its picturesque landscapes and rich culture. But to me as a seven year old, the country held many hidden dangers. The first of these that I encountered was the seemingly harmless blackberry bush. Row upon row of blackberry bushes stretched before us like lines of soldiers standing to attention. Their weapons soon became obvious as I tried to squeeze between two large bushes. The prickly thorns grabbed at my bare arms and legs, leaving thin red scratch-marks. My brothers were using sticks to fend off the bushes. As Mum came to my rescue, I wondered why my father was so excited about picking blackberries that seemed so well guarded. But Dad had insisted that we couldn’t leave New Zealand without experiencing blackberries.

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Dad strode ahead of us confidently. ‘Hey! Here’s a good lot!’ Dad’s excited shouts made us all look in his direction. He was high-stepping purposefully off to the right. Suddenly, he disappeared. Mum started laughing uncontrollably as the bushes where Dad had vanished began waving furiously. Eventually he emerged, arms covered in scratches, his white shirt stained with the black dye of the berries. He looked as though he’d been in a mini war. New Zealand had other nasty plants. There were the stinging nettles that sent a red hot current through the bare skin of an unsuspecting leg. These plants were scattered in small clumps throughout the bush and were invisible to my eye. And the innocent-looking plant with the deep purple flowers, known as deadly nightshade, apparently had the power to kill. I never found out just how it did its killing. Did the plant have a mystical power that attracted people to it at night when the killing took place? Or did its perfume send people to sleep, never to wake again? Or maybe a witch used it in a magic potion which she fed to small children. Even swimming in the heated baths wasn’t safe. Mum and Dad warned us not to jump in or get water up our noses because of a nasty bug that lived in the warm water. The bug got my sister when she refused to get out of the water one day. She was all wrinkled and a bit giddy when finally she did get out. Two days later, she became really sick and had to see a doctor. Dad waited with us while Mum took Susan into the doctor’s surgery. When they reappeared, Mum put my sister straight to bed. As I looked at my sister’s red face, I overheard

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Mum telling Dad that Susan had fainted when the thermometer was placed in her mouth. Our plans would have to be put on hold for a few days while she rested in bed. Sensing my parents’ worry by their lowered voices, I tried hard to think of something to say to make things better. It came early the next morning when I awoke to find my sister peacefully asleep and still breathing. This I announced excitedly to my drowsy parents, adding with relief that she wasn’t dead yet. I felt really guilty when my sister became so ill because of something I’d done to her during our stay with our aunt and uncle in Auckland. Aunty Mac and Uncle Chas lived in a house on the top of a steep block of beautifully landscaped land. While we were there, Susan and I got the job of fetching the milk and newspaper every morning from the bottom of the long flight of concrete steps that led from their front door to the road below. Annoyed by my sister’s long legs that always got her there first, I tricked her one morning, getting a head start that I was sure would make me the winner. But of course she beat me yet again, and in a rage I pounded back up the steps without the milk or the paper, and hid under my bed. Noone had seen me enter the house. When my sister returned with the goodies, I heard my aunt’s voice, unusually sharp and anxious, asking where I was and telling her off for not looking after me. I hadn’t realised my aunt was so over-protective and I hated hearing my sister getting such an unwarranted tonguelashing, but I stayed under my bed, regardless, leaving her to bear the brunt of my aunt’s rage. We travelled around New Zealand’s North Island in a hired blue campervan. To pass the time while on the road, we

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played the game, ‘I Spy’. It was by good luck that I ever won this game; the chosen object had to be either inside the van or large enough for me to spy it outside the window. But I never gave up trying, guessing wildly at the answer in my attempt to win. When I did strike it lucky, I used my vivid imagination to my advantage. ‘I spy with my little eye something beginning with “c”.’ A chorus of voices started immediately on what could easily be seen within the van — curtains, cupboard, cup, carpet — but I just shook my head. So the eyes turned doubtfully towards the windows, knowing that I couldn’t have seen anything unusual that they hadn’t spotted. A couple of obvious guesses were made, but my smug smile forced them all to give up. ‘A cat!’ I shouted with glee. ‘I saw a cat back there.’ ‘No you didn’t,’ came the familiar protest from everyone. The first time I’d heard that tone of disbelief was when I’d told them that a train driver had waved to me. We had been driving from Perth to Fremantle when I had noticed the train slowly overtaking us. When asked how the driver could drive the train if he was waving at me, I’d answered that he had one eye on the track in front and one eye on me. It had made sense to me, but the others had just laughed. Our campervan took us to many interesting spots. One dark night, we arrived at a farm which offered free camping sites. Dad read a large warning notice on one of two gates. It said: ‘Danger. Bulls in paddock. Keep out.’ So we’d set up camp in the neighbouring paddock that was free of bulls, cooked fresh corn cobs and went to bed. The next morning, John flung open the door of the van. Not more than thirty feet away stood

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a large black bull with fierce-looking horns. There was no fence between him and us. It took us barely two minutes to pack up and beat a hasty retreat.

* Having my grandparents living close by to our house meant that I spent a lot of time with them, mostly over at their house. My favourite part of the house was the old enclosed back verandah which had once been a sleep-out. My grandparents used it chiefly as a storage area, but what attracted me and the others was the large blue cushion-topped trunk. Grandpa’s cat, Samantha, was also drawn to this expanse of comfortable cushions. She would only leave her warm nest for a good reason, usually the promise of a groom with the stiff wirebristled brush on the table by the louvred windows. There she would arch her back in ecstasy, her purrs increasing in volume as the bristles moved along her back. Only then could the trunk be pulled away from the wall and the lid lifted to reveal a wonderland of treasures that kept us occupied for hours. There was a green snake that writhed when held by its tail, a Slinky that sprang like a nimble gymnast down stairs, tennis balls to throw against walls, and an assortment of odds and ends that fuelled our imaginations. My second favourite part of the house was the kitchen. This room was always filled with the delicious smells of my grandma’s cooking. She was a superb cook. With her trusty old gas stove, she produced perfect dishes, both savoury and sweet, that we children drooled over. The cake with the pale pink

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icing was my favourite. Each time we visited, I’d lift my nose towards the kitchen window as we walked down the side of the house in the hope of catching a whiff of that freshly baked cake smell. She always seemed to know when we were coming: there was invariably something cooking in the oven or on the stove. When it was time to go home, my grandma would reach for the freezer door, bringing out the familiar tub of icecream. Scoops of creamy white ice-cream were placed into square cones in readiness for the best part of all: a topping of jelly-beans from the glass jar that lived on the lower kitchen shelf with the other jars of goodies. My grandpa had special talents too. He spent many hours in his toolshed in the back yard, where he transformed both old and new materials into useful and creative masterpieces. Just about everything in that shed had evolved from Grandpa’s hands, from the long workbench to the iron vice and shelving that held all his tools and paint cans. Even the motors of his bandsaws had been manufactured from old washing machine motors. We were fortunate enough to prosper from his great gift. The billycart especially was a huge success. One person steered with hands and feet while another pushed from behind. The boys took it in turns to push each other around the back yard, dodging in and out of the trees and shouting in triumph when the driver spilled out while taking a sharp corner. My sister and I weren’t strong enough to propel the cart over the rough grass, so Grandpa came to the rescue. He made a long handle on the back of the billycart so that he didn’t have to lean right over when pushing. And to stop any fights over

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who went first, he’d put one of us in the cart and the other in the washing trolley he’d made for Grandma. Then he pushed and pulled us around the back yard at the same time. The billycart, under my brothers’ control, had many near misses with the tall trees, the clothes line and Molly, the goat. Molly lived at the bottom of the yard on a long line of rope. She terrified me. No matter how hard I tried to keep a safe distance between us, her big horns always seemed to find their target. She belonged to some friends of my grandparents who needed her minded while they were away. My grandparents had a habit of adopting other people’s animals and birds. Chooks from the house behind often flew over the low fence to be fed by my grandma. When we didn’t fight over the billycart, we played bobs, another creation of my grandpa’s. Bobs was a tabletop game where you scored points by hitting wooden balls, about the size of squash balls, with a cue stick through a series of numbered mouse-holes cut into a wooden board placed at the far end of the table. A frame behind the mouse-holes stopped the balls from skittering onto the floor. Each ball had to be lined up on a starting line at the near end of the table before it was struck. All the equipment was handmade by Grandpa. An old blanket thrown over the table in the enclosed back verandah made the perfect setting. The boys always cheated at bobs. Instead of shooting the ball from the starting line, they would lean right over the table, setting the ball down as close to the mouseholes as they could before taking aim with the cue. Grandpa’s pride and joy was his chess set. The elegant pieces so carefully carved were permanently set out on a

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specially built table marked with chess squares. We were never allowed to play with this chess set. Grandpa played chess by correspondence with his brother, an alleged retired horse rustler with an alias in Mount Isa. So a game took months to finish with a piece being moved every week or so. The chess set may have been Grandpa’s ultimate piece of art, but the child-sized rocking chair he’d made for my fifth birthday outshone it by far. Put together with bits and pieces of wood, Grandpa had stained the chair a mottled reddish brown colour and carved a heart out of its back. Mum had finished it off with a red satin cushion with two large felt eyes and a smiling mouth framed by a lion’s mane of red fringe. That chair, although in great disrepair now, is still with me today. It was a rare event for my grandparents to babysit the four of us at our house when Mum and Dad went out at night. This was probably because of a mutual feeling of not wanting to intrude or to be a bother. Mostly my parents hired university students who were seeking a bit of pocket money. But there were occasions when no-one was available and my grandparents stepped in. It was at these times that I saw quite a different side to my grandparents.

* When my grandmother and grandpa came to babysit — although my brothers protested that they were too old to be babysat — they never took off their coats. They would perch on the edge of our couch in the lounge room like penguins on an iceberg preparing to plunge into the freezing water. Their

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backs were so straight, their hands folded in their laps. Grandma’s coat was an olive green, Grandpa’s beige. The coats hung down to their knees when they stood up, and made a little curtain drop from the couch when they were seated. Mostly they sat on the couch. My brothers would lie on their stomachs on the floor, their legs bent up towards the ceiling, watching a science fiction film on TV. Every few minutes one boy’s bent leg would topple grandly over, an annoyed cry signifying a direct hit. My sister and I would play Fiddlesticks in front of the fireplace, the finely pointed red, green, yellow and blue sticks scattered in a heap between us. My sister would sit like a frog with her legs bent at an excruciating angle from her body. Deftly she’d slide her stick under the end of one on the heap and flick it free. Her face was not as close to the sticks as mine. I had to peer at the sticks to find one that could easily be extracted without moving the others. My mother couldn’t watch me play this game. Once, a skilfully flicked stick embedded itself just below my eye. But it wasn’t my good eye. I didn’t have to look at the couch. There was no movement, no sound. It was as though my grandparents had been placed in suspended animation. I supposed they were still breathing. I think my grandpa even used to keep his hat on. It was strange that my grandparents seemed so uncomfortable when they came to our house. When we visited them, they were always open, warm and relaxed. It was almost as though they felt they were a nuisance at our house and didn’t want to be a burden. They never touched the food and drink left for them by my parents at these times. But at

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bedtime, my grandma’s love and warmth reappeared and her coat became invisible as she started the song my mother always used to settle me down. ‘Hush-a-bye, my little picanee.’ While my mother traced patterns on my face with her finger as she sang, my grandmother didn’t need to. Her voice had the same effect with its soft, gentle and reassuring tones.

* I was eight, turning nine, when it happened, when my childhood seemed to be sucked away from me the way a tornado sucks up everything beneath it. Never again would I look at the world, or myself, in quite the same way.

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CHAPTER 3

THE RED DOOR

* The red door stood ominously in front of me. Its message was clear. Danger . . . warning . . . proceed with extreme caution. Fear began to mount in me as I wondered what lay behind that door. But then the sign on the wall next to it caught my eye and I was completely bewildered. BLIND SCHOOL.

What? What was I doing there? I wasn’t blind. There must have been some mistake. The day I’d found out that I’d soon be changing schools had seemed just like any other day. My mother had been making cornflake biscuits when I’d arrived home from school. I had run the last hundred metres down the grass verges as usual, leaping up and down the slopes bordering the driveways, blonde pigtails flying out behind me. The familiar sight of my mother in the kitchen together with the smells of baking had added to my exuberance as I began to chatter nonstop about the day’s events.

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But something was wrong. Something in my mother’s posture made me stop. ‘Mum, what’s the matter?’ ‘Nothing, Darling.’ ‘Yes there is. What is it?’ I was only eight years old but my intuition was very sharp. Walking over to the kitchen table, my mother had sat down with a deep sigh and pulled me up onto her lap. Her face was sad. There were even tears in her eyes. I had rarely seen my mother like this. ‘The doctors say you have to go to a different school ... a special school,’ she stammered. ‘But why?’ I asked. ‘Oh ... the teachers can’t cope ... because you can’t read the blackboard. And because of the lamp you have to have on your desk. People trip on the cord ...’ ‘But I take my chair to the board and stand on it to read.’ ‘I’m so sorry.’ My mother had hugged me tightly and we had both cried.

* I never saw the man who must have come to Nedlands Primary School to make the decision about my future: whether I could stay at that school or whether I had to move on somewhere else. At least, I decided it would have been a man rather than a woman who would have been sent to watch me. Someone had

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told me that a person from Special Education would visit me at school. The reason for the visit was not clear to me and I never thought to ask about it. Each day while sitting at my school desk I waited for the man to appear. My attention drifted to the door every time it opened, watching for the mysterious intruder. I didn’t think he would approach me; I imagined him standing in a corner of the room, observing me with a smile on his face. When no-one came to the classroom, I began to wonder if he was spying on me through the window. Bending my head even further over my books, I tried to give the impression that I was working really hard, despite not knowing what I should have been doing to impress him. I made sure I switched on my desk lamp, which really served no purpose. The teachers had just decided I should have it: I never bothered to tell them I didn’t need it. But maybe if the man saw me using it, I’d pass the test. What test? My imagination had the man following me home from school, hiding behind trees so that I would not notice him. I felt sort of special because someone had been sent to watch me. But I was still troubled about what the man wanted to see, and how I should behave. Sometimes I’d walk home crookedly down the footpath as though I couldn’t see where I was going, just in case ... But if the man had been watching me in the street or through the window of the classroom, or if he had slipped into the room while I wasn’t looking, I never knew about it. Life went on as usual until that day, the day I learned of the verdict,

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just a few weeks before the end of my fourth year at Nedlands Primary School. Leaving my friends, favourite teachers and a school I loved at the end of grade four was devastating for me. Now I would never enjoy the privileges that came with being a senior — the camps, school excursions, being a prefect, and the graduation night. I was to enter a foreign world that at times felt like a prison. BLIND SCHOOL. Red door.

The door opened. I stared at the deep blue carpet that lay beneath little clumps of desks and chairs. I trailed numbly after a teacher who wanted to introduce me to the other students. There were two classrooms separated by a strange-looking divider curtain that reminded me of a piano accordion. As I looked at the other children sitting at their desks, I felt as though I was floating in a cloud of confusion. They had grey metallic machines in front of them which made clunking noises as the keys were pressed, but they were not typewriters. And the children were all different ages. Some were pre-schoolers and others looked like high school students. I was not to know that these older children would become my soul mates. The fighter inside me was about to be fired up. The Blind School was on the same site as another primary school, which was referred to as the ‘sighted school’. A special bus picked me up from home every morning and dropped me off each afternoon. Because there were only thirty pupils in this school, there was no school assembly, no lining up before entering the classroom, and all the grades were

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mixed in together. As far as I could tell, the two classrooms which made up the Blind School were divided into grades one to four, and grades five to seven. But some of the grade sevens were fourteen and fifteen years old: they had been taken out of high school because they had been assessed as needing to learn braille. And yet not all of them were blind. In fact most of the older children had reasonable vision, in my view. Why I had been placed at such a school became even more of a puzzle as the strict rules of the prison-style institution closed in on me like the slamming of a cell door. Rules that made no sense. They would try to change me, to break me of my childhood, to make me someone I clearly wasn’t. But as each rule was laid down, the spark inside me grew even brighter. Rule one was a complete mystery to me. At this school, we had to use our fingers and not our eyes to see. ‘Here, give me your finger. You can feel that some of them have raised dots, and the others have holes,’ said the face with the black-rimmed glasses and dark grey curly hair lowered close to my own. The voice sounded old, sort of quavery, and her dress looked like the kind that my grandmother might wear with its conservative floral print. After all, this was the headmistress. She was bound to be old. Some plastic eggs, split into halves, were spread out on the desk in front of me. My desk. A desk that appeared to be an ordinary school desk but really wasn’t: it had no groove at the top for pens and pencils and no old ink well depression that was brilliant for holding round pencil sharpeners. Taking my index finger, the headmistress lightly pressed it against first

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one and then another of the plastic egg halves to show me what she meant. I looked at the little egg halves that resembled hardboiled eggs with brilliant orange-yellow centres. In each yolk were either raised pimples or holes. ‘Now, we’ll turn them all upside down and I want you to put them back together with their right partners.’ The headmistress moved away. I stared at the twentyfour little igloos before me. Picking one up, I quickly scanned its yolk, counted the number of raised dots or holes and began to search for its match. This was easy, like fitting the right peg into a similarly shaped hole. I had completed three eggs when the frantic cry rang out: ‘No, no, no! Use your fingers! You’re not to use your eyes!’ The hands swept in with the strength of a tornado, demolishing my work and sending the little igloos into a spin. This time the headmistress did not leave my side. I was puzzled. Why was I being asked to feel when I could see? It seemed crazy not to use something that works, and even crazier to do such a simple task. I had done this sort of thing at kindergarten. But I had no choice. The headmistress was waiting and watching, her presence overwhelming. Silently I picked up one of the igloos and pressed my finger against its belly. I had to concentrate really hard in order not to look at what I was doing. The hunt for each partner was painful and long. There was no quick flipping over of the igloos to find the pair. Each one had to be tediously explored with my finger. After a long time I finally relaxed my gritted teeth and lowered my fixed gaze to survey the dozen eggs.

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I didn’t realise that this seemingly meaningless task was to prepare me for the real reason that I had been sent to this school: to learn braille. But the intense dislike I harboured for the rule of not being allowed to read with your eyes was no match for the loathing that was evoked when my fingers were introduced to braille for the first time. The thick paper riddled with raised dots seemed to regard me with invisible eyes and speak in a foreign tongue. ‘Just press very lightly,’ the teacher instructed. ‘Your fingers will be very sensitive from the exercises we’ve given you. And you’ll have to really look after them from now on to keep them that way. You won’t be able to do anything damaging like woodwork or metalwork.’ The sensation of the dots under my fingertips sent shivers up my arms. The urge to lift them from the page was so strong. The rough, dry texture of the dots reminded me of sandpaper. I hated it. I wanted to rush to the bathroom and put my hands under the tap, or even to lick my fingertips just to relieve the dry feeling. I knew instantly that I wasn’t going to enjoy the experience. And anyway, wasn’t braille just for blind people? Again the hollow words echoed in my head. ‘How much eyesight have you got?’ The question had come from one of the older students on my first day. ‘Thirty-three and a third percent,’ I answered proudly. Somehow the fraction greatly increased the value of the figure. ‘No, you can’t have.’ ‘What do you mean?’ ‘Everyone here is legally blind. You must have ten percent or less, otherwise you wouldn’t be here.’

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The student had moved away. I stood staring vacantly into the distance. That conversation had been a catalyst to a strange event that took place only a couple of days later. This event, or revelation, would change how I perceived myself and my life. I was standing in the front yard at home gazing at the tall lemon-scented gum tree. Strips of bark hung untidily from its white trunk. Our tabby cat, Trixie, loved to sharpen her claws on that trunk. For some reason, I couldn’t take my eyes off the tree. There was something different, something missing in the picture ... The wall! Where was it? Our front garden was half enclosed by a red brick wall. I was standing in the open half of the yard and the wall should have been on my right, should have been in my line of vision as I looked at the tree. But it wasn’t there. Moving my head to the right made the wall appear. But on turning back to the left until I could see the gum tree, I lost sight of the wall. I froze in both fear and amazement. Half of my world had vanished. Suddenly I felt a shift within me. It was as though my total awareness had moved into the left side of my body. If I cast my eyes down I could see my left shoulder. But I could not see my right shoulder. The shoulder still remained invisible even when I screwed my head as far to the right as I could. Looking straight ahead, I could see the left tip of my nose, but where was the right? A blankness fell over the right side of my face. Tentatively I lifted a hand towards my right eye. There was nothing: no dimming of light, no awareness of movement, no change to what I was seeing. Not even blackness. I realised that

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there hadn’t ever been anything to see, but I’d not experienced it this way before. The blindness in my right eye had never been noticeable to me, had never made its presence felt. But now it was obvious, glaringly obvious, and I felt different.

* Becoming proficient at braille involved two things: picking up a new language whose letters were made from a combination of six raised dots; and then learning how to write using a special brailling machine. The brailler had six keys and a spacebar. Once I’d been taught how to form individual letters, it was time to conquer the shorthand of braille, yet another set of key combinations. But braille wasn’t the only thing I had to master. Once I’d become familiar with my braille machine, it was time to investigate the manual typewriter’s multitude of keys. The reason for being able to type was to provide a translation of my work for my teachers in the future who would have no knowledge of braille. But once again, the lessons were different, and the rule of not ‘using your eyes’ was uppermost. A blue-and-white checked curtain hung down over the typewriter keys, concealing them. Yet another restraint. Grudgingly, I slipped my hands through the curtain and began typing. The curtain was made of the same material as my old primary school uniform. The Blind School had no uniform. From my first day there I defiantly wore my blue-and-white uniform. It gave me some comfort, a feeling of being more

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normal. The children in the sighted school next door wore a very similar dress. But I missed my sports tunic terribly. A beautiful royal blue with three coloured tapes around the hem — white, lemon and pale blue — it had given my legs speed and agility. The green cord with silky tasselled ends which I tied around my waist had put an extra bounce and spring in my step. Fridays at my old school had been sport days, the days I’d really looked forward to. Getting out of bed had been easy on those days. Slipping into my tunic, I would carefully tie the green cord so that the tassels were even. With pride, I would meet my friends at the top of my street and we would walk to school together. Now the sports tunic hung in my wardrobe, unused. Sport at the Blind School consisted of jumping and exercising in a small room, not playing netball, softball, tunnel-ball or running around an oval. The sports tunic had no place there. Sometimes I’d put it on at the weekends, running the silky threads through my fingers longingly ... ‘No, no! Don’t do that!’ I froze. The magnifying glass clasped in my hand hovered above the typed page. ‘What do you think you’re doing?’ the teacher demanded. ‘I’m just checking my typing,’ I replied, feeling stunned. ‘You must never, never do that. I’ll check your work. Now put that down.’ Confusion, anger, frustration. If there was anything good about having to use my

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fingers to see, it came with the arrival of a tall handsome blond-headed man one afternoon. He and another man, who I hardly even noticed, were making some sort of film. The tall man had a warm smooth voice like honey and an air about him that excited and interested me. I thought he might be a famous movie director looking for talent. I felt strangely drawn to him when he approached me, took my hands gently in his and told me how beautiful they were. After spending a long time admiring my hands, he asked me if he could film me feeling a raised map of Australia. Immediately I felt resistance rising within me: this was definitely against my whole belief system and I didn’t want to do it. But as I listened to his voice and his compliments about how perfect my fingers and nails were, I gave in. The bright spotlight rigged up above my desk highlighted my hands on the page as my fingers traced their way up and down the West Australian coast and over to the east. All the way through the filming, the man with the honeyed voice kept encouraging me, making the task I hated so much easier to bear. At the end, he lifted my hands to his lips and kissed them with tender affection. I could not take my eyes off him as he held my hands so lightly in his. And my smile lasted for the rest of the day. I wondered when he would come back for me, to get me to star in one of his movies. The fighter inside me began to grow and strengthen as, one after the other, the Blind School’s rules were set down. Every day I watched as the children from the sighted school ran around freely, played ball games and sat in little groups on the grass to eat their lunch. It was as though an invisible wall, a

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protective force-field, permitted me to see this other world but would not allow me to join it. And yet these activities were perfectly normal: routine things that could be seen at any school. But not at the Blind School. Rule Two. Lunch had to be eaten inside at a long table under close supervision. On days when the sun shone warmly and a light breeze drifted through the trees, it was torture to be sitting on hard chairs under the cold guard of the building. The memory of soft grass cushioning my bare crossed legs during lunchtime at Nedlands Primary, a sandwich in each hand, soon faded. Sometimes a small group of the older students were given a reprieve and allowed to eat lunch in the pre-school’s kitchen. Usually this happened after a cooking class where we were expected to eat what we had made. At times our creations were not always appealing, but we knew the rubbish bin would be checked, that there was no way of disposing of the evidence. An attempt to flush toasted jam sandwiches down the preschool toilet was quickly discovered and orders to clean the toilet issued. Rule Three. Running was not permitted. Rule Four. The only ball game allowed was confined to a fenced bitumen area where a large canvas ball that jingled could be kicked from one end to the other. It reminded me of a playpen, a large playpen. And if the ball was kicked too high, the red door would fly open, propelled by the booming voice of the headmistress. Rule Five. Everyone had to have a shower after sport. ‘Sport’ at the Blind School progressed from simple exercises in

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the pre-school to using the gym equipment at a nearby high school. This new environment, so much closer to my perception of normality, caused my hopes to rise slightly. Being in a large high school gymnasium surrounded by vaults, a balance beam, climbing ropes that hung from a bar near the ceiling and long rubber mats for floor work made me feel somehow special and important. Walking on the squeaky polished floorboards marked out as a basketball court aroused images of netball games back at my old school. But the vision faded, along with the feelings of hope and relief when, on return to the Blind School, the mandatory shower rule was issued. It wasn’t the idea of having a shower that disturbed me; it was the lack of privacy. Halfway through undressing or while I was under the shower, the door would open and a teacher would enter with one of the younger blind children. ‘It’s all right,’ was the standard statement, ‘he can’t see anything.’ But the invasion was enough to make me feel uncomfortable. So, at shower time, I would head for the bathroom as usual, turn the water on while I quickly got changed out of my sports clothes, wait for three minutes, then turn the water off and go back to class. But the headmistress had a nose for everything and my little trick was quickly discovered. I was never allowed to miss a shower again. The Blind School’s rules became my challenge. They served to activate my anger, my determination not to be restrained or restricted. With the help of my rebellious friends, I learned how to break the rules and achieve a sense of normality. The Blind School had eyes. Keeping out of their line of sight was the trick, the challenge.

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Very early on I met the children who knew how to avoid the eyes. Joe and Robert were older than me, probably thirteen or fourteen. Drew and July-Anne were around my age, and David was the youngest. David’s total blindness was no barrier to his inclusion in the group. He would race around the verandahs hanging onto Drew’s hand, skidding around corners in his brown leather sandals. Initiation into the group was straightforward for me. I fitted the criteria for membership well: everyone had to hate rules and love breaking them, speed was essential, and dobbers weren’t allowed. ‘Let’s play brandy,’ Drew said one day, producing a green tennis ball and tossing it from hand to hand. Nods from the group, quick glances towards the red door, then silently we moved off. When we were at a safe distance, the boundaries were set. The strictly off-limits bush at the back of the school and the nature strip on the opposite side became the playing areas. A small part of the nature strip could be seen from the Blind School. This added an element of danger to the game. Joe took the ball and started counting to ten. The group scattered, heading off in all directions. I had played Brandy before, a game in which you have to be hit by the ball before you are ‘it’. Robert headed for the bush. I followed him, alive with excitement, speed and freedom. Robert was the tallest among the group, his long legs covering the ground easily and carrying him over logs and down embankments without trouble. I admired Robert and so tried to copy his every movement. But sometimes this resulted in physical pain. My short legs could not scale with such agility

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the large concrete structure that was part of a retaining wall on the edge of the nature strip which served as a great hiding place. Once spotted by your pursuer, it was faster to get away by climbing up onto the wall and jumping down the other side. But the big drop off the wall was enough to jar my legs. That’s when the eyes saw us. Although the concrete wall was on the far side of the sighted school, away from the eyes’ gaze, the group had been spotted. My painful limping into the classroom that day attracted comment and then the reprimand. But the taste of defiance was part of me now. The invisible presence of the eyes only made me more adventurous. The normal life that the sighted kids took for granted and which I missed dreadfully, became closer to being mine in grade seven, my last year at the Blind School. Things began to change, rules were relaxed. The first thing that happened was that a select group of us were allowed to join in one of the sighted school’s English classes on a weekly basis. Although being in a normal classroom again excited and pleased me, I also felt some anticipation, nervousness and embarrassment. Walking into a room which held more children than the Blind School’s entire population was scary. All eyes were on us, the kids from the Blind School, and our cumbersome braille machines that thumped onto our desks. When it came time to start writing, the clunking of the brailler’s keys made so much noise in such a quiet room of busily working students. I dared not look around to see who was staring at my monstrous machine. It took me a while to get over this feeling of shame and embarrassment and to relax enough to enjoy being in a normal class again. But when I did, these times of the week became my

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favourite and I thought highly of Mr Reeves who took the class. He never treated me differently, and there was one time when this became very evident. The classroom was quiet because I hadn’t started on the assignment Mr Reeves had set for that day. All the other kids had their heads bowed and pens skittering across the paper before them. Mr Reeves was sitting at his desk at the front of the room, not far from me. The minutes were ticking by, but my hands still had not touched the brailler’s keys. The sound of a chair scraping the floor made me look up. Mr Reeves was approaching me. ‘Is anything the matter?’ he asked, squatting down by my desk. He must have noticed that I was frowning, not with concentration, but with annoyance. Maybe he thought I’d be pleased to be free of the Blind School for one class a week. But he didn’t understand the added burden that I carried. ‘It’s not fair,’ I blurted out. ‘I have to braille my story first, then type it up. It’s going to take so long.’ He understood immediately. This was the longest piece of work he’d requested of the class, a short story of no less than eight pages. His response was totally unexpected. ‘So why don’t you just write it?’ I stared at him in amazement, my jaw dropping. He meant for me to use pen and paper. ‘But I couldn’t ... I’m not allowed!’ Without a word he stood up, walked over to his desk and found a blue pen and some lined paper. When he returned he removed the brailler from my desk, replacing it with the taboo items.

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‘I won’t tell anyone,’ he promised. The assignment was due in the following week, so I worked on my secret story at home. It had been two years since I’d diligently practised my handwriting in classes at Nedlands Primary School, so my pen didn’t flow across the paper as it used to, and the letters looked stilted. Staying on the ruled lines took some concentration, but the end product was quite legible. I’d still been perfecting the art of running writing when I’d had to leave Nedlands Primary School, so it probably wasn’t surprising that my writing looked underdeveloped. Mum had drawn a picture of a horse’s head on my cover page as that’s all I seemed to write about. I had believed Mr Reeves when he’d promised that he wouldn’t reveal my secret. So I didn’t have any guilty feelings or fear of being found out after I’d handed in my story. So when a small stack of paper with the familiar drawing of a horse’s head on top landed on my desk in the Blind School, I was stunned and horrified. The deliverer was one of the teachers who worked with the younger Blind School students. ‘Very good work,’ she remarked, before disappearing into the headmistress’s office. I sat frozen, not daring to breathe or move a muscle, waiting for the inevitable ... the punishment for not obeying the rules. But it never came. Instead, the rewards began to filter through, one after the other. Changes were starting to take place in the Blind School, but it wasn’t really clear why they were happening. Perhaps the education department was having a rethink about the treatment of children with

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disabilities, seeing the benefits of both integration and giving students permission to use the abilities they had, rather than forcing them to give these up. It could have been a bit like the days when left-handers were compelled to write with their right hands, their natural skill being dismissed and seen as somehow flawed rather than just another way of being. Finally, those of us who had some sight were allowed to use it. Handwriting lessons were introduced. Pens and paper complemented the braille machines for the first time. The things I had started to learn at my old school began to come back. I was allowed to do my maths in print instead of braille, as long as the numbers were printed much larger than I needed. I didn’t fight this, as the battle had already been won. Obligingly, I printed each figure the height of two lines to keep the teachers happy. It was like Christmas when I was allowed to use my magnifying glass to read the colourfully illustrated music books during singing lessons. A box of assorted reading aids was produced for the other children to use. Normality started to return in other areas too. I joined the kids in the sighted school for sport each week. Instead of being confined within four walls, I now headed for the oval with my sighted friends to run, play team games and fly over high jumps. At the school sports carnival, I was adopted into the Red faction. The hundred metres race would have been mine if I hadn’t forgotten about the finishing tape. Streaking ahead of the field, I felt the same thrill and elation that I had experienced in the past, knowing that I would win. But the two years away from the running track had taken their toll. Noticing that I had run

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past the crowd, I faltered and then stopped, thinking that I must have gone past the finishing line. The others flashed past me and through the finishing tape that I hadn’t seen only metres ahead of me. Bitter tears fell as I walked past the judges. So I was ready when I made the inter-school carnival. This time it was a relay race. I was the first runner. Gripping the baton in my right hand, I concentrated hard on the curving track. The gun cracked and I was away. The baton change would be crucial. We had practised it many times. I neared Felicity, who started running. Our hands met and Felicity scooted off with the prize. Our efforts were rewarded with a second place. But the real victory came with just being there. The Blind School had never held an assembly. Now we joined the normal school’s grand assembly each week. We formed our own line next to the grade seven children. Occasionally, the headmaster of the normal school invited one of us to take the assembly or make a speech. One thing led to another. My days at the Blind School became fun, exciting, normal. I formed strong friendships with kids in the sighted school and spent my lunchtimes and recesses playing with either my rebel friends or my sighted friends. Sometimes the two groups would mix. My fighter instinct took another turn too. I hated seeing any bullying in the playground amongst the sighted school’s students, even when the victim was not someone I hung around with. Rita was a taller than average girl, lanky, with long black plaits that drooped with her long face. Not being a popular girl, Rita was a perfect target for Stella and her gang. On entering the girls’ toilets one lunchtime, I found Stella and

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her gang crowded in front of a cubicle. From behind the closed door came Rita’s familiar voice, broken up by sobs. Stella was jauntily hurling comments through the door while her gang laughed. Without a second thought, I stood in front of Stella and said: ‘Stowena, Stella, whatever your name is, leave Rita alone.’ Stella’s face lost its smirk as her group fell about in fits of giggles. Wordlessly, the bully left the toilets minus her gang. End of year events at the Blind School had always been in the form of skits and plays we put on for the parents. I never enjoyed these, preferring more the fancy-dress dances we’d had at Nedlands Primary School. So when we were invited to the sighted school’s dance at the end of grade seven, it seemed as though normality had finally settled itself firmly into our little school. It was during the ballroom dancing classes with the sighted school that I fell in love with Andrew. Love wasn’t new to me; I’d had crushes on boys at Nedlands Primary School as well as infatuations with two of the older boys in the Blind School. But Andrew was different. He was smaller than me, had mousy brown hair and a charming face. In the dancing classes he held me so securely in his arms while we waltzed around the hall. His voice was quiet and warm. It seemed to smile along with his face. In the progressive barn dance, I longed for the moment when I’d reach him again. None of the other boys had his touch. These classes were the only times I saw Andrew, and I looked forward to them with great eagerness.

*

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I started horse-riding lessons while at the Blind School. I loved those Tuesday afternoons when I could burst through that red door and head for Mum’s car, not the school bus where our behaviour, until the bus left, was always closely monitored. Safely in the car and on the way to the stables, I’d get changed into my jeans and boots in between sets of lights, hoping noone could see me. At the stables I was free, completely free: sometimes the riding teachers forgot that I had a vision problem. My love for horses came out of nowhere. No-one else in my family showed any interest in them. In fact horses terrified my mother. As a young girl she’d witnessed a child getting kicked in the face by a pony at a suburban fete. But Mum’s fear of horses hadn’t transferred itself to me. From the age of three I had always made a beeline for the pony rides at every fete or show around Perth. Cuddles, a fat little black Shetland pony with a thick shaggy mane, won my heart from the moment I saw him. A fete wasn’t worth going to if Cuddles wasn’t among the ponies trundling contentedly along the well-worn tracks in the grass. By the time I was nine my parents realised my obsession with horses was not just a passing phase as they had hoped. After making enquiries, they enrolled me in riding lessons with Riding for the Disabled. If they thought this facility somehow guaranteed a safer learning environment, that the horses might be more docile, they were about to discover the opposite. My first teacher told me that a rider had to fall off ten times before he or she could be called a good rider. I lost count after seven. The Riding for the Disabled (RDA) group got their

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horses for free from generous people in the horse world, so most of the horses were ex-pacers, broken-down racehorses and discarded polo ponies. Naturally these horses were tested for their suitability, but as few offers were made, not many were refused The horse I fell off the most was Malden, an ex-polo pony who I loved dearly despite our many misfortunes. Malden was nothing to look at, just a plain bay with no striking features. He had been given to me for my first riding lesson, and so an attachment between us had formed. Malden and I worked happily together at the beginning; it was only when I was learning to canter that the falls began. Cantering lessons took place in the back paddock. RDA had been granted the use of two paddocks next to the city rubbish dump. These paddocks had not been cleared of their natural bushland and so were scattered with tall trees and blackboy bushes. Any clear bit of land, either along a fence or away from the big trees, was used for the lessons. In the top corner of the front paddock stood the tack and feed sheds. These sheds drew the horses like a magnet at any time of the day regardless of when they had last feasted on the luscious hay and chaff that were stored there. So it was probably a mistake to have the cantering lessons in the back paddock with the connecting gate left open. But as it was a lesson about controlling the horse at the canter, the gate always stayed open. And so my cantering lessons usually ended the same way, with Malden and me at a hard gallop flying through the back gate and heading for the feed shed. My ability to steer him away from that dreaded open gate was dismally lacking and no

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amount of yelling from my teacher to pull hard on the reins made any difference. Malden mostly took the quickest route to the shed, straight across the diagonal, which was thankfully clear of trees. His sudden stop at the shed often sent me flying off the side and into the black sand. Just as I began learning how to keep my seat during these sudden stops, Malden tried to test me another way. He chose the scenic route around the perimeter of the front paddock and through the trees, many of which had low overhanging branches. His intention was not to leave me hanging on one of these branches, but to swerve at the last minute. When I hit the ground on these occasions, it was with much relief: colliding with a solid branch was something I feared more than anything. I was forced to change mounts when I started jumping lessons. Malden was no jumper, as I quickly discovered when I tried him over a small log. He had a strange style, like an old, arthritic dog, which has to hurl himself up and over the jump from a standing start, stopping dead on the other side from exhaustion and pain. Malden’s unexpected braking took me by surprise and I found myself watching the ground slowly approaching. This was the first slow-motion fall I’d had; there was all the time in the world to reach out, grab the reins and haul myself back into the saddle; it was only the motivation that was missing. That’s when I was introduced to Amber, one of RDA’s best little horses. It didn’t take us long to become acquainted and for me to forget my loyalties to Malden. Amber was in a class of his own, despite his very ordinary appearance. It was this class that took us into our first dressage test together, when

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I was ten and a half years old. Although it was a competition for riders with disabilities, judges from local pony clubs had been brought in to mark the tests. The venue alone indicated the importance of the day. Dressage arenas ... horses ... judges in bowler hats ... Claremont showgrounds ... people watching. Another of my dreams? Not this time. Amber stood calmly, his mane neatly plaited, tail brushed out, coat shining. The odour of polished leather filled my nostrils as I took the reins from my riding instructor, Jill Hancock, and swung up onto Amber’s back. The cuffs of the borrowed dark-blue hacking jacket hung slightly over my gloved hands and the banana-coloured jodhpurs were a little large, but I didn’t care. I was in heaven. ‘How’s my star pupil feeling?’ my teacher asked, smiling up at me. Jill Hancock also taught at a pony club in Gosnells where she wanted me to go after my time at RDA for my future lessons. She just had to find me a horse that I could use. ‘Good,’ I replied dreamily. Leaning forward, I patted Amber’s firm glossy neck. He was an old hand in the show ring where he’d won many ribbons and trophies in dressage and showjumping in his day. He must have loved those times. Now, sitting on his back, I could sense his contentment and excitement at being back in the spotlight. ‘Start warming him up,’ came the instruction. ‘Trot a few circles.’ Squeezing my legs against his sides, I felt Amber’s familiar fluid motion beneath me as we moved off. Images of

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the final line-up floated through my mind, Amber with a shiny blue sash around his neck and a beaming judge handing me a trophy made of gold. My teacher’s voice caused the picture to vanish. ‘Janet, they’re ready for you.’ Panic. My stomach did a flip. Could I remember the test? What did I have to do first? Did I have to meet the judges? As though reading my mind, Jill said, ‘I’ll come with you to the judges’ car.’ The judges’ car was parked at the far end of the arena. We only seemed to be there for a few seconds before we were heading back to the waiting area. ‘Okay, you’re on,’ Jill announced at the sound of the judges’ car horn. ‘Circle once before you enter, and make sure you’re straight going down the centre line.’ Looking towards the arena, I suddenly felt cold. All my dreams had deserted me and something awful had taken their place. I couldn’t see the entrance. The ropes around the arena were a burnt orange colour and I couldn’t see them very well against the dry brown grass. ‘Where’s the entrance?’ I asked, feeling sick. Jill gave me a sort of surprised look that quickly changed as she issued an order. There was no time to waste. A helper started running towards the arena to stand to one side of the entrance. Jill left me. Everyone was waiting. Starting my circle, I suddenly realised something else, something terrifying. I had no idea which side of the entrance the helper was marking. Should I go to the right or the left of her? The wrong choice would have Amber careering into the

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ropes. Biting my lip, I took a wild guess and steered Amber for what I hoped was the centre line. Nothing hit Amber’s chest as we trotted past the helper and down the centre line. I was back in my dream, but this time it was real. Amber was dancing, his neck arching proudly and his feet lifting high. I felt a bit worried when I noticed the upturned yellow buckets on my left. On them were painted letters which I couldn’t see but which I knew off by heart. The only problem was that I’d forgotten to say each letter softly to myself as I passed its bucket until I found ‘E’, where I was supposed to halt. But my head felt light as I danced with Amber. Nothing mattered. I halted where I thought ‘E’ was and saluted the judges before starting the test. The test went quickly with Amber doing everything I asked of him. We only hit the orange rope once at the beginning. Amber seemed to understand that I couldn’t see the ropes because, after that, we didn’t hit any more. Halting on the centre line for the final time, I dropped my hand and bowed my head to the judges. Amber stood squarely, his neck still arched. The ribbon wouldn’t be blue, but I knew we were winners.

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CHAPTER 4

INVISIBLE SCARS

* His thin body lay in the hospital bed. His watch had slipped up to his elbow, so wasted were his arms. But the face and the personality had not changed. His white wispy hair, bushy eyebrows and mischievous smile greeted me as always. Did he know he was dying? I didn’t. ‘Try to eat something, Grandpa,’ I urged, for at nearly twelve years of age I was sure I could make him better. His eyes turned to me lovingly. ‘I’ll try,’ he promised in his familiar husky voice. I had been frightened of him up till that point because of that voice. When I visited my grandparents, my grandfather was always sitting in his usual place on the red stool in the kitchen. In the last couple of years, I had never seen him out of his pyjamas and slippers, his pipe close at hand. But talking with him was scary for me because I couldn’t understand what he was saying. His years of continuous puffing on the pipe had

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made his voice breathy and husky. And I felt too embarrassed to ask him to repeat himself. ‘I’ve read your poem, “The Dream Horse”. It’s very much like my own style. I really liked it.’ His face was genuine. My fear vanished. Suddenly I realised just how much I respected him and wanted to learn from him. I hated seeing my grandpa in this sterile, clinical place without his home comforts. The things that mattered to him most — his Siamese cat Samantha, his beer and his pipe — were what he needed. When he’d been sick before, I’d believed that I had the power to cure him. A necklace made of apple seeds was my sacred object. I’d placed a magical spell on this necklace to make him better, and had hidden it in my dresser where no-one would find it. If the beads were touched by human hand, the spell would have been broken. Up till now, the spells had always worked. Grandpa didn’t show any pain or sadness, at least not in front of me. He spoke cheekily to the nurse who came into the room and was his usual witty self with Mum and Grandma. It was almost as though he wasn’t going to let his body get in the way of his life. The journalist with so many years of experience in writing both serious and humorous pieces was still in charge. And as we left the hospital that day, his words of love, praise and respect became part of me. My grandpa died that night.

*

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My longed-for break away from the Blind School and re-entry into the real world went from being a happy dream to one that started losing its colour after my grandpa died. This was my introduction to uncertainty. I would never again be able to rely on things being constant. I had not lost anyone close to me before. My grandfather in New Zealand had died before I was born. The only loss I could relate to was when the husband of a friend of my grandma’s died. He had been very kind to me. I used to call him Uncle Gordon. I remember one day at the Blind School when I felt as though I was floating outside my body. All day I floated around in a strange numbness. When I got home from school, Mum told me the news. Gordon had died that day. The gift of a puppy for my twelfth birthday helped to restore my faith in the world and to set my sights firmly on the year ahead. To be free from the Blind School was more than I could ever want. ‘You’ll need two lockers at high school,’ the headmistress of the Blind School had told me knowingly before I left. ‘One for your brailler and typewriter, the other for your books. You’ll need braille books. You’ll never be able to read the print in the school textbooks.’ The spark of determination inside me crackled and leapt higher. I smiled. The doctors had been wrong about me going blind. It hadn’t happened in the three years I had been at the Blind School. I wouldn’t need two lockers. The tin shed in the back yard at home would make a great storage place for my brailler. High school held so many enticing promises: to be with

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my old friends again; to be like everyone else; to be reunited with the intoxicating smell of newly printed textbooks; and to watch the red ink flow from my pen as I carefully ruled up a blank page. I thought it would be like old times. But the dream began to fade rapidly as I started my first year at Hollywood High School, my illusion of the real world shattering as easily as a crystal vase accidentally dropped from a curious child’s fingers. Things had changed. The distance, the years away from the real world, had been too great. I could not bridge the vast chasm that suddenly appeared in front of me. My first day at high school was a shambles. The large size of the school grounds, the double-storeyed buildings and the many steps and staircases that connected the different levels were foreign to me. I fell down one flight of stairs before the day had even started. The grazes on my leg seemed to hurt even more when the new first year students were called together and divided into classes. It was then that I discovered all of my closest friends had studied music at primary school, meaning that they were now grouped together in the music form. The names and faces of the students in my class were unknown to me. I felt abandoned, lost and alone. My dilemma soon became known to my teacher, who set about to find me another class where I knew somebody from my old primary school. When Cassie, a girl I had known at Nedlands Primary, appeared at the classroom door to take me back to her class, it was humiliation, not relief, that walked with me. My dream was becoming almost colourless. Lots of things had changed now that I was in the socalled real world. It was almost as though I had been put into

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suspended animation for three years, only to find myself released back into a world that had altered drastically. The verandahs were alive with bustling, noisy students, many many more than I was used to. At recess and lunchbreaks everyone headed for their lockers, dumped their bags on the benches below them and took off for the canteen, quadrangle, oval, or anywhere else that they desired. Life seemed to be moving at a much faster pace, one I could barely match. I soon discovered that if I was not quick enough, I got left behind. My vision was not good enough to find my friends in this huge school and I could never find the words to explain this to them. During recess and lunchbreaks I tried walking close by groups of girls, straining my ears for distinctive voices. Sometimes I would sit with a group I thought I knew, only to discover that they were strangers. Then I would return to the lockers with a red face and wait hopefully for someone I knew to turn up. But it rarely happened. Lunchbreaks and recesses took an eternity to end. Even the library was lonely. I started having a recurring dream, or nightmare. I was coming home from school, but for some reason couldn’t find my house. When I walked through the gate that looked like our front gate, I saw that the wooden letterbox attached to the brick wall was painted orange, not brown like our letterbox. The house was empty and felt very alien. I knew it wasn’t our house and so went searching up and down the street for my familiar home. I kept returning to the one with the orange letterbox that looked like our house but wasn’t. Still there was no-one there. I would wake up feeling very worried. The real world was like my nightmare, the only

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difference being that I could not wake up from it, could not escape from it. The power of this new nightmare was so great that it began to change me. No longer was I a confident, selfassured and determined little fighter. Now I was a shy, selfconscious teenager with many inhibitions. I was beginning to see myself as different, as being apart from the others. The invisible scars from the weeks of radiotherapy had suddenly become very obvious. I knew that my eyes were different, that the bones of my face had been affected by the life-saving yet severe treatment. Physical looks now took the centre stage, with beauty dictating whether you were in or you were out. And this was how your worthiness as a human being was judged. The ugly scars that were the legacy from the radiotherapy now evoked strong feelings of shame and were also a perfect opportunity for teasing by a small group of boys. The tormenting always took place at school, except for one occasion when it happened on my way home. The bikes circled me as I walked along, holding me prisoner within their invisible force-field. No-one in the busy street seemed to see my distress or hear my silent cries. I kept moving, eyes downcast, legs wooden. I dared not look at them. The constant chanting that swirled behind the bikes like the wake from a boat was hard to block out. ‘Frankenstein . . . Frankenstein ... Herman ... Herman.’ Ignoring it was the only way I knew how to cope. But it didn’t work. ‘Frankenstein ... Frankenstein ... Herman ... Herman.’ The bikes increased their speed, the circles tightening, the chanting becoming louder. Pedals and spokes flashed past

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my heavy eyes until they became just a blur. I was vaguely aware of the feet attached to the pedals, but the faces seemed blank. Pedals. Spokes. A dizzy whirl. The tears started, familiar and painful. Until now they had been confined to the schoolyard. I had lost count of the times I had spent sitting alone on the cold wooden bench beneath my locker wiping away the wetness from my flushed cheeks. I hadn’t looked at the faces then either. The school library had been my refuge, my safe haven. There was no refuge now, nowhere to flee even if I could have broken through the barrier. Like vultures, the bikes had spotted their prey, descending mercilessly upon it to deliver the final blows. My legs moving forward mechanically. Spirit left behind. The pain I suffered from this constant teasing was so bad that I didn’t want to tell anyone about it. I didn’t want my friends to hear the names the boys were hurling at me. Images of Frankenstein’s monster and Herman Munster with bolts protruding from each side of their heads, deep-set eyes and smoke coming out of their ears followed me around like a persistent black cloud. If my friends knew what the boys thought of me, they might agree with them and start laughing at me too. The shame I felt was so intense that even when one of my closest friends was with me when the teasing started one day, I pretended that they weren’t directing it at me. Then I quickly had to make an excuse to get away from my friend so that I could find a safe place to let go of the tears that threatened to explode at any second.

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My parents found out what was happening when my brother Mark witnessed the incident outside school. He had left high school, had acquired his driver’s licence, and was driving home from the beach when he saw the boys circling me with their bikes. He stopped to offer me a lift and as I climbed gratefully into the safety of his car I hoped desperately that he hadn’t heard the boys’ chants. The bag of lemons I had collected from my grandma’s tree fell heavily to the floor by my feet as we moved off and I busied myself with my seatbelt, not daring to show my face to my brother. A few days later during a science class, I heard the deputy principal’s crisp steps entering our room. She spoke in a quiet voice with our teacher, but my sharp hearing immediately picked up the mention of my name. Ending their short conference, the deputy headmistress called me to the front of the class. Scribbling on a piece of paper, she smiled, folded the note in half and asked me to take it to the principal’s office. I walked the short distance across the grassy quadrangle to the dreaded office whose only visitors were latecomers with notes and naughty boys who had been evicted from class. The reason for my summons both puzzled and worried me. Mr Cooke took the note, then became fidgety as he started asking me questions about how I was enjoying school. After only a few minutes, he thanked me for coming and sent me back to my class. The class was unusually quiet when I walked in. The deputy headmistress had gone. Taking my seat I asked Rosalind, who was sitting beside me, what the deputy

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headmistress’s visit had been about. The answer was vague and she quickly changed the subject. A couple of the boys in front of me turned around and offered a few words of friendliness and help as we continued with our work. Much later, I discovered the real reason for the deputy headmistress’s visit. She had been to every class in my year, broadcasting my secret story of humiliation and pain, ordering that the teasing stop immediately. But the teasing didn’t stop. And now everyone knew of my vulnerability. I had been exposed. My inner being, that shameful dark place, had nowhere to hide. One morning a few weeks later, I was running late for my first class. Arriving in the classroom, I found a seat and unzipped my schoolbag to retrieve my social studies file and pencil case. My pencil case was not there. In disbelief, I pulled everything out of the bag to find the pencil case that must have been there because I never forgot anything. Then, as my hand explored the empty space within the schoolbag, a strange, overwhelming feeling of sadness descended on me. Muttering something to my friend sitting next to me about having to go home to get my pencil case, and ignoring the offer of a spare pen, I fled from the classroom. The tears that started from the moment I phoned Mum for a lift home didn’t stop for the rest of the day. I felt trapped within a sadness that I was unable to explain. Nothing made sense. To this day, I still find it hard to utter those words that the boys chanted at me. For years I could not sit next to a man without trembling. Although younger boys evoked the highest feelings of anxiety in me, I had somehow lost my faith and

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trust in the male species in general. And mirrors became my foes.

* Surviving the first two years of high school was made easier by the kindness of my maths teacher, Dr Starr. He took an interest in me from the first day that we met, recognising me as one of the many Shaw children that had passed through his door. His experience with my brother John, who was going through a destructive phase at the time, did not tarnish his image of me. He saw difficult teenage boys, in particular, as troubled and needing help. It was this helping hand that he offered to me in such a way that I saw it neither as intrusion nor pity. Dr Starr discovered my love of horses and passion for riding. His sister lived on a farm in Mt Barker. Her two daughters had horses which they used for rounding up the livestock and for local showjumping competitions. Dr Starr and his wife often made trips down to the Mt Barker property during the school holidays. After term one of school, I received my first invitation to join them. I was made very welcome by Dr Starr’s family during my stays on their farm. I had always imagined myself as a country girl and often dreamed of marrying a rich farmer. After my first visit to the little South-West town, I knew I’d have to marry a farmer in Mt Barker. All around me stretched rolling green hills dotted with pockets of wooded groves and creeks that flowed with fresh clear water in winter. Surrounding the farm like large, gentle guardians were the

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magnificent purple mountain ranges of the South-West. The air was so crisp and pure, the silence so deafening, that sleeping at night was initially difficult. And of course there were the other enchantments that went with country life: the horses, the sheepdogs and the fun. Dr Starr’s nieces and I spent hours every day riding around the property, rounding up cattle, jumping logs and galloping up hills. Riding the horses bareback to the neighbour’s dam where we went skinny-dipping was the most daring and thrilling thing we did. During one of these escapades we thought we heard a horn sound close by as we drifted around naked in the muddy dam water. Bolting out of the dam, we hurriedly pulled our clothes on, scrambled onto our horses in fits of laughter and charged off. I had the slowest horse, who was faking a limp on that day, and had to shriek to the others to wait for me. None of us actually saw anything, but then nor did we dare to look. At night we entertained ourselves by holding seances. Sitting cross-legged on the floor in a darkened back room with only a flickering candle illuminating our faces, we’d wait anxiously for the upturned wineglass to respond to our questions. One finger only was allowed to rest lightly on the base of the glass to facilitate the spirit’s entry. If the glass shot across the table and fell over, accusations of someone having pushed it erupted spontaneously. But when the glass spelled out that we had Jack the Ripper and proceeded to spin off the table, there were no shouts of disgust. As the candle flickered violently and went out, we all screamed and scrambled madly for the door.

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My dread of sleeping out under the stars on the farm in midsummer might have been caused by the seances, or it might have resulted from my fear of snakes. This was where my desire to become a country girl ended. I could not get the image of the children’s python out of my mind. Dad had brought it back from one of his many bush adventures, depositing it in our bathtub before excitedly calling me in to see it. I was about five at the time and, in my opinion, the snake was all ready to hurl itself at me. Even our back yard was not safe from the hideous creatures. John’s pet snake Oscar escaped one day and buried itself deep in our back yard. Although Oscar was only a few centimetres long, my fertile imagination had a six foot long snake emerging from the middle of the back lawn when I was outside playing. Going camping was creating so much excitement for the other two girls that I dared not show my reluctance. But spending the night so close to the horrible reptiles I was sure were all around us had me greatly worried. With all my senses on alert, I followed the two girls armed with sleeping-bags down to the old creek bed in the pitch black. My nerves got more jittery as I listened to their stories of creepy-crawlies found in their sleeping bags in past camp-outs as we bedded down for what would be a long night. Every rustle in the grass, every snap of a twig, had me tense and ready to flee. I imagined the cold coils of a snake slithering over my legs and up into my sleeping-bag. I couldn’t bear to think of the one that might drop out of a nearby tree onto my head. Even though the two dogs were with us, I could not relax. I never saw Dr Starr on a horse all the time that I visited

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the farm. Although he talked about his riding prowess constantly, he always refused to join us on our many jaunts. I didn’t ever find out if he could ride at all.

* With adolescence, of course, came the inevitable headlong plunges in and out of the mysterious world of love. Fortunately my fear of boys was never strong enough to override the emotion of love. During my years at primary school there had been many love interests. But with the image of the bikes and the sound of the chanting still so fresh in my mind, I was now more wary of the opposite sex. Despite this, there were one or two boys who managed to get past my barrier. From them I felt genuine interest, respect and friendship. With them I felt relaxed, alive and more confident. But my memories kept me moving on, kept me turning away so that the teasing would not start again.

* Black fish-net stockings, Dad’s long white shirt tied with a black sash, black felt shoes. My whole body tingled with excitement. ‘Okay, you girls,’ barked Miss Brand. ‘This is your final dress rehearsal. Now I don’t want any mistakes.’ Miss Brand always wore a tracksuit, never a skirt like the other phys-ed teachers. But as a dance teacher, she was the best. Her dance steps were precise and fluid, her choreography fitting in with the music as though the two had been created for each other.

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We took up our starting positions in a long line. I looked at my friends in their stockings and shirts. Anna, of course, looked a million dollars with her shapely legs and thin waist. She was a great dancer too, and she knew it. ‘Because I don’t want any mistakes,’ Miss Brand continued, ‘I’m going to watch very carefully. When anyone makes a mistake, I’ll call out your name and you have to sit down.’ My stomach lurched. I’d be the first to sit down, for sure. Anna would breeze through. I couldn’t compete with her. Footsteps sounded at the entrance to the school hall. ‘You’re just in time, boys. The girls are going to rehearse the Rocky Horror Show’s “Time Warp” and they’re not going to make any mistakes.’ My heart seemed to stop and my knees turned to jelly. Alan was among the boys filing into the hall. He was wearing the brown jumper and grey jeans I loved so much. I turned away quickly, but could feel his eyes on me. Ecstasy and fear began their familiar grapple. What would he think of me when Miss Brand screeched out my name? Alan and I sat next to each other in Maths, only a foot separating our desks. When our desks were joined during activities in pairs, I felt like fainting. His gentle eyes and soft smile melted my heart. Once, he took my hand and told me I had beautiful nails. Miss Brand headed for the tape-recorder. The boys whistled. Jody giggled nervously, nudging me with her elbow. Anna let out a conceited snort. I shut my eyes and prayed. The music started. My body moved effortlessly,

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following the routine exactly, but my mind was elsewhere. I could hear Miss Brand’s voice and see my friends sitting down. I did not notice the boys perched on the edge of the stage. Suddenly, I became aware of my surroundings as though surfacing from a vivid dream. Everyone was on the ground except for me. Had I missed hearing my name? ‘Janet was the only one who did the whole dance correctly,’ Miss Brand scolded. ‘Well done, Janet, but as for you others ...’ Anna looked up at me, tossing her black hair dismissively. I felt my face flushing. I turned my back on the stage in order not to meet Alan’s eyes. Alan eventually gave up on me after much patient persistence but constant let-downs on my part. During a photography class he had offered to stay on after school and help with processing some of my prints. I had thanked him profusely, then left him to it. When we met at the lockers, I managed only a few minutes alone with him before my feet ferreted me away on some errand. But the real let-down came at the school social. Alan had plucked up the courage to ask me for a dance. He had his friend Patrick with him for moral support, and I had two of my friends with me. As a group we moved onto the dance floor and started to jiggle to the music. Everything was going well until I suddenly realised my friends had drifted off and I was alone with Alan and Patrick. In a mad panic, I turned and headed for the door. I didn’t see Alan again for the rest of the night. Afterwards, my heart ached over what I’d done. At school the next day I could see from Alan’s demeanour that

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he’d been hurt. And the nervous phone call I made to him a few days later to try to explain made no difference. I had lost Alan for good.

* The doctors did not tell me or my parents that later in life my eye could, or would, suffer from the late effects of the radiotherapy, which I’d undergone about thirteen years ago by now. Perhaps because I was one of the very few people to survive the bilateral retinoblastoma with some vision preserved, predicting the future was near impossible. Perhaps there were numerous permutations of outcomes that would only distress my parents and were therefore withheld. Near the end of my second year at high school I started seeing things. The black lines that descended from the top of my vision were very thin. They aroused my curiosity, but I quickly dismissed them as being my eyelashes. It was a premonition that alerted me to the danger. The black lines seemed worse one day. I complained about them to Mum, who took me into the kitchen to get a better look under a bright light. As she started to tilt my head back, a wave of fear swept through me. I knew instantly that my vision would be blurry the moment I looked down again. It happened, exactly as I had foreseen it. My premonitions never let me down. It was almost as though they helped to fill out a picture of which I could see only parts. I lost count of the number of premonitions that bombarded me every day. Like tiny flashes of the very near

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future, they told me what people were about to say, what would happen in the next few minutes, that the telephone was about to ring and who was on the other end, and warned me of dangers that lay ahead. Although these visions had become a normal part of my life, I didn’t always listen to them, particularly when they warned of danger. When walking around the school one day, a vision showed me that I would trip down a small flight of steps. I ignored the warning because I thought I was nowhere near the top of those steps. I was wrong, and a sore ankle made me pay more attention the next time. The overwhelming ‘something’s wrong’ feeling I occasionally experienced was one I didn’t dare ignore. At these times there were no images in my mind, just a strong foreboding. One of these feelings came over me when I was about to go horse riding one day. I checked my horse thoroughly before I mounted and retightened the girth before leaving the stable. The feeling did not let up during the ride and something made me recheck the girth. It was loose. Pulling up, I tightened it again, thinking how lucky I was to still be on my horse’s back and not under his hooves. But the premonition about my vision becoming blurred was not there to give me a second chance: it was purely a statement of fact. My eye specialist wasn’t surprised when I described my experience to him a couple of days later. He made thoughtful noises, then quickly arranged for my admission to the Mount Hospital for a closer examination under anaesthetic. This was just the beginning of yet another long series of encounters with hospitals and operating theatres, my old foes.

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The luxury and attention I received in my private room at the Mount gave me a false sense of security. For once I was feeling great. The usual waves of nausea I experienced after an anaesthetic were absent. Instead, I floated blissfully in and out of a pleasant sleep. But my sanctuary was about to be invaded and blown apart by an old, yet still active, bomb. When my parents entered the room I realised at once by the silence that followed them in that they had been talking to my doctor. ‘We’ve got some news for you,’ my father started. I looked at them. They were standing a little distance from my bed. I could feel their discomfort. ‘You’ve been experiencing retinal haemorrhages. They’re because of the radiotherapy ... it’s weakened the blood vessels in your eye. They’re going to have to do some operations, some treatments.’ It was as though I had been slapped in the face. My head turned spontaneously away from them. I did not want to know any more; I did not want to hear the truth. But I could not hide from it for long. In the following weeks serious consultations with eye specialists became the focus of my world. A visiting specialist eye surgeon from London was called in to advise on my case. The problem was a big one. The radiotherapy had also caused a cataract to grow on my lens which, in the past, had not been troublesome. But now this piece of cloud made it impossible for the surgeons to get a clear view of my retina and hence treat the leaking blood vessels. Cataracts need to be mature before they can be removed. Mine wasn’t, but they couldn’t stick to the original plan of waiting until I was

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eighteen before removing it. That was four years away. The haemorrhaging needed immediate treatment. The haemorrhages were getting worse. The familiar thin black lines were now developing into thick splodges that obliterated my vision. The catch was that surgery couldn’t be scheduled until these haemorrhages had settled, and yet urgent surgery was needed so that treatment could start on the blood vessels that had been weakened. Finally, the bleeding seemed to subside and I found myself back in hospital for part one of a re-encounter with operating theatres, green gowns and antiseptic smells. The first operation was to remove my cataract. Losing the cataract also meant losing my lens. The night before the operation I sat up in bed under my fluorescent tube with knees bent and head bowed over a book. The rest of the room was in total darkness, only a dim light from somewhere down the long corridor attempted to penetrate the blackness. Every now and then, the long silences were interrupted by the sharp slap of a page being turned. ‘Are you still reading? It’s time for lights out.’ My head jerked up at the unexpected intrusion. A sudden fear rose up from within, a fear that I had managed to squash till now. ‘What are you reading?’ the nurse asked. ‘ To Kill a Mockingbird ,’ I answered quietly. ‘It’s for school.’ I had to finish it. After tomorrow ... ‘Come on, it’s nearly ten o’clock. You need to rest before tomorrow.’ ‘Let her stay up,’ the young woman in the next bed

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interjected. She was a nurse who was in hospital to have the moles on her back removed. ‘The light doesn’t bother me.’ I looked beseechingly at the nurse, my fear growing at the thought of the next day. The book in my hand might be the last I would ever read. Since the age of six I had been in love with the world of books and reading. Back then I had not needed a powerful magnifying aid to read the print: a simple magnifying glass, the sort used to study insects, had been enough. Each night and at any spare moment I would sit with my stack of library books, nose buried deep in the pages. I would float through the ghostly white gum trees with the Silver Brumby, Elyne Mitchell’s creation. The Secret Seven always involved me in their adventures. The series of My Naughty Little Sister books made me feel like a saint. There were never

fewer than four books on my bedside table every night. It was only a short time later, when I was about eight or nine, that my vision had diminished enough to need a stronger aid for reading. And this new, more powerful device, which would never be matched by any other, brought me back to my world of fantasy, images and colour. At first, reading had been slow and painstaking with the new magnifying glass. If I moved my hand too quickly over the print, the letters would blur. It took time to adjust to the much enlarged print. But the magnetism of the world of books was great and soon I was reading swiftly again. Would the window to my world of happiness now be closed forever? The light above me was snapped off. The doctors were taking no chances with me as they

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embarked on a journey that had many divergent paths and crossroads. I emerged from the comfortable oblivion created by the anaesthetic to discover that this recovery would be very different: for four days I was to lie either flat on my back or on my right side only, and coughing and sneezing were not allowed. Any sudden jarring movement could undo the surgeon’s careful work or start a haemorrhage. The nausea I loathed so much refused to leave me in peace and was resistant to the calming injections. The nurses waited for as long as they could before gently propping me up in an effort to stop the dry retching. Their dilemma was obvious: to move me meant risking the delicate work of the surgeon, but to allow the dry retching to continue was placing a greater strain on my healing eye and risking a haemorrhage. As the days went by the pain in my back and right leg and hip became unbearable. The back massages only gave temporary relief. The patch over my left eye was removed fleetingly so that stinging eye drops could be drizzled in. At these times I could not get an idea of how much, or what, I could see. My hopes of regaining the vision that I had had as a child, that magical figure of thirty-three and a third percent which had been gradually eroded by the cataract, had already been dashed by my specialist. Scar tissue had formed to prevent me from ever regaining that level of sight. My mood began to plummet. When there were gaps between visitors, I allowed the tears to flow. John came to see me with his girlfriend during one of my blackest moments. It was night-time and Mark had just left after devouring my uneaten ice-cream. I had settled down with

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my tears for a long sleepless night, but had to quickly turn them off when I heard John’s voice. He soon broke through my deepening gloom. Commandeering a wheelchair from somewhere in the corridor, he set about doing wheelies in the tiny space of my room. Although I could not see what was happening, my imagination gave me a perfect picture. It was not possible to feel sad with John around. On the last day of my immobility, I suddenly became aware that I could see. Some friends from school were visiting at the time. With amazement, I realised that I could see one of them sitting on the end of my bed. She was wearing a red raincoat. My eye-patch was still on. The vision was very cloudy, as though I was seeing through the cotton wool of the patch. Even the food on my meal trays became visible. My new-found vision only began to alarm me when the thick clouds vanished and a vivid scene lay before me. I was looking at two adjacent walls painted with lines of moving black dots. As I watched, I realised that the walls were sliding into the corner in a continuous motion. The speed of the sliding increased until suddenly the walls parted. Ahead of me now was a street somewhere in a busy city. My bed began to move, propelling me down the middle of the street over the flashing broken white lines that separated the two lanes on the road. I had to grip the sides tightly as my bed rocketed crazily along. My father was sitting with me at the time. He noticed my hands hanging on to the sides of the bed and asked me what was wrong. My answer sent him scurrying away in search of a nurse. I was told I was hallucinating and was immediately

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taken off one of my medications. When the day of the great unveiling finally arrived, when the eye-patch was peeled back to reveal the visual world, it was intrigue rather than fear that filled my senses. Things looked blurry and yet somehow sharper than before. A pair of thick-lensed cataract glasses were slipped onto my nose, bringing the room into focus. Immediately I knew what the difference was; I had discovered the world of colour. Certainly colour had always been present in my visual world up until that point, but not in its true sense. The cataract had caused my perception of colour to be dulled. With the cataract now gone, the vividness and beauty of the colours around me had me spellbound for days, like a baby discovering its fingers and toes. At home I went through my wardrobe, seeing for the first time the real colours of my clothes. The carpets and rugs in our house contained many more shades of reds and browns than I had realised. With fascination, I traced their exact geometric patterns with my finger, understanding their appeal to my parents. Drives in the car had me gazing out the window with my mouth open, incredulous at the lush green of the street trees and different coloured brickwork of the houses. I had not lost the visual world I treasured so much. In fact I had been given a bonus. Even the doctors were surprised and pleased with the result. Forgotten was the imminent presence of the haemorrhages that had been the motivation for the surgery. Forgotten was the next step, the treatment of the weakened blood vessels with laser therapy. But I wasn’t allowed to stay in the land of Utopia for

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very long. The haemorrhages returned in force only weeks after the surgery, staining my crystal clear vision. I’d had one of two sessions of laser therapy to seal the leaking blood vessels at the back of my eye before the first big bleed. When the bleeding continued after the final session of laser therapy, I was taken back to the operating theatre for a procedure to freeze the freefloating blood into a clot which could be pushed out of the way, hopefully relieving the pressure on the eye. One of these procedures wasn’t enough: a second operation was carried out about a month afterwards, again to try and stem the bleeding. All this happened within a period of about four months. During this time, my vision was so cloudy that I couldn’t go to school. I was absent for all of the last term of year ten. In one way this was a relief. I missed out on the dreaded maths exam. Half the paper was devoted to geometry, my worst subject. I had failed all the geometry tests during the year. No matter how many times I studied the loathsome blue folder filled with theorems and sketches, nothing sank in. When the school year broke up, I was desperate for some respite from my constant contact with doctors and hospitals and procedures that just didn’t seem to be working. I wanted to be able to see clearly again. But the relief would not come.

* It was happening again. I watched as the thick black streak descended to the centre of my vision. Suddenly it exploded, taking the form of a large spider-web, spreading its tentaclelike strands in every direction. A spider sat at the top of the

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web, its colour changing ... black ... red ... misty-grey. Another haemorrhage on my retina. Another impenetrable mist that blotted out the world around me. Somehow, I was getting used to them, becoming familiar with their intensity and frequency. I sighed in resignation. This meant no horse riding for the next six weeks or so. My eye specialist’s words returned to me: ‘... all that shaking and jolting around. It’s no good for you. You’ve got to stay off the horses. And no other sport, either.’ Even my second eye specialist, who so often softened to my love of riding, would have said the same at that point. The haemorrhages were getting out of control. They were ruining my summer holidays. My plans to join my friends at a horse-riding camp had been dashed. I imagined them on beautifully groomed horses, swimming in dams and trotting along under starlit skies. My heart ached so badly. Time was getting away from me. I was missing out, missing out on life. With the second last year of high school just about to begin, I knew I had to move. If I fell behind, I’d never catch up. When year eleven started, my vision was still plagued with the cloudiness from frequent haemorrhages. My form teacher stopped at my desk in the first week with the blank year eleven timetable card in his hand that needed to be completed for the school’s records. I sensed his awkwardness. ‘Can you fill this out?’ he asked hesitantly. ‘No, I can’t see anything. But I’ve memorised my classes. Could you write them down for me?’ This was the first time since rejoining school after such a long absence that I’d been faced with writing anything. The

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desks and chairs in the classroom around me were invisible, as was the print on the pages of my textbooks. Each time I entered a classroom, I silently prayed that I wouldn’t sit on anyone’s knee. It was particularly difficult to see the boys in their grey uniforms. The walk along the misty school verandahs each day was terrifying. Voices around me gave me some idea of where people were, but their bags were silent obstacles. Searching for classrooms took time and I was often late. Pride stopped me from asking my friends for help, and so I struggled on through the grey mist alone. The form teacher squatted down by my desk and wrote out my timetable as I dictated. This was the beginning of a new way of doing things, of discovering how others could assist me while my sight was so faulty. I had never sought help before this, when my sight was clear, preferring to try and cope on my own. But now I was being forced to ask for and accept outside support because there was no way I could manage my schoolwork. And all of my teachers proved to be helpful. Some read notes from the blackboard into a tape-recorder, others wrote them out for me. My friends came up with the idea of using carbon paper so that I got an instant copy of their notes. At home, I would go over the day’s work with my mother as my reader and scribe, patient as always. But accepting help only went so far for me. I continued to struggle with moving around the school, getting to classrooms, lockers and the canteen without being able to see where I was going. My sister had left school by then, but one of her friends noticed me bumbling along a verandah one day

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and immediately took charge. She regularly met me when Mum dropped me off at school each day, escorting me to my lockers. But she couldn’t always be there when I needed a guide, and I never told my friends how hard it was for me to get around. With all the extra work I had to do after school just to keep up, my school days became twice as long as what I’d been used to. But I was desperate not to fall behind. I had to maintain this pace for four more weeks ... just until the next operation, the last attempt to stop the haemorrhages and clear my vision. Relief and fear accompanied me to hospital when the time finally came. The feeling of relief was that I would no longer have to battle every day through the grey mist around the school grounds; that I would not have to repeat my lessons each day after school to complete the exercises everyone else had done in class. But the fear easily overrode the relief. This operation was a major one. A needle would be inserted into my eyeball to suck out all the thick fluid, replacing it with silicon. Silicon, being a much thinner fluid than the natural gluggy fluid within the eye, would disperse the blood from the leaking vessels much more quickly, and hopefully stop the bleeding by reducing the pressure. Just the thought of what was going to happen was bad enough: a recurring image of a needle being stuck into an eye, like a pin into a fragile eggshell, was never far from my mind. But added to this was the knowledge that there was no other treatment if this one failed. In the bed next to mine in the six-bed hospital room was a three year old girl, Joanna. Joanna and I were going to

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theatre on the same day. On the morning of the surgery, Joanna woke me very early with her sobbing. My nerves joined hers as she started to be sick over the side of her bed. It wasn’t long after she had been wheeled off to theatre that I had to call for a kidney dish. Only a small sip of water was permitted with the anti-nausea tablet to try and calm my churning stomach before the nasty pre-medication injection was thrust into my rump. And then came the part I really hated. The trolley arrived, announcing itself by bumping the side of my bed. Groggily I hauled myself onto its narrow mattress. I kept my eyes shut as we glided through the ward and down the elevator to the theatre. Only then did I dare to open my eyes. Bright lights overhead, disembodied voices all around. Hands touching me, calm and efficient. Electrodes placed on my chest  just routine, they said. The prick of a needle in the back of my wrist. Then a floaty fuzzy feeling took me right out of control. A smelly oxygen mask that I wanted to scream at was placed over my nose and mouth. It all happened so quickly. There was no time to protest. I tried to fight the anaesthetic. The voices started to shake and distort into a rapid ‘ack ack ack ack ack’ that bounced violently around in my head. And then the blankness descended. Whether it was my reluctance to comply with the anaesthetic or just the fact that this was the fourth operation in eight months, my mood during this hospital stay was a pretty foul one. I woke up in recovery with the sensation of air blowing on my face that sparked immediate rage. I had never come to in recovery with the oxygen mask still on. It was the feeling of being somehow enclosed in a small space, trapped

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with the ironical fear of suffocating, that frightened me most. Angrily, I muttered something about taking it off. A nurse’s voice came closer, asking me to repeat what I’d said. And so I did, at the top of my lungs, while grabbing the mask and throwing it as far as I could, which was probably only as far as its connecting lines would allow. Then I announced I was going to be sick and blacked out. My mood didn’t improve in the next few days. I was tired of the nausea and the injections that did nothing but make more holes in my skin; I was tired of arguing with the menu lady that I would not need dinner that night because the nausea wouldn’t go until morning; I was tired of feeling as though I’d been punched in the eye and of having to put up with bright lights and stinging eye drops being forced under my bruised eyelid. Even the ward rounds, in which students huddled like ducklings around the registrar as my case was described as though I wasn’t lying in the bed in front of them, made me furious. I felt like saying or doing something really bizarre to jolt them out of their wooden ways. When I found myself apologising to my grandma for my irritable behaviour while she was visiting, I realised things were pretty bad. When my eye-patch came off about five days after the surgery, I didn’t know what to expect. My eye was still very swollen and I could open it only a fraction. My eye specialist had waved his torch in front of me, which I had been able to see. He seemed pleased and left me to rest. But I wanted to know more. Reaching out to my locker beside the bed, I felt for the little furry friend my mother had brought in a couple of days earlier. It was a Gonk, a little creature made out of a single

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pompom with eyes, mouth and a pair of feet. Gonks were all the rage then; my friends were collecting them and making them into little families. I held my gonk up close to my eye and gently opened my eyelid. Through the tiny slit I could see his brilliant blue fur, his bright pink feet and his yellow eyes. I had not been able to see so clearly for so long. When Mum arrived, I didn’t tell her at first about my discovery. Then I calmly described the gonk to her, thanking her for such a colourful present. And then I couldn’t keep the smile from my face. My stay in hospital was longer than it should have been due to a complication. My cornea had developed an ulcer because I hadn’t received enough of the lubricating eye drops that had been prescribed. I knew I had what they termed ‘a dry eye’. The radiotherapy had not only burned the lens of my eye but had also damaged the tear duct, with the result that I only produced half the amount of tears that were normal. I had never had to use eye drops in the past, but with all the surgery in the recent months, my eye had become more sensitive and now needed artificial lubrication. To make matters worse, the radiotherapy had also affected the muscles in my eyelid, preventing me from keeping my eye closed at night to protect it from drying out. With the operation deemed a success and the gaps between the haemorrhages increasing, the hospital scene was finally behind me. My focus turned to the pursuit of my greatest love: horse riding. At the start of high school I had joined Riding for the Disabled as a voluntary helper. As a pupil I had gone as far as I

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could with RDA. Private lessons had my mother and me travelling for miles to stables in the northern suburbs where, in summer, black sand, dust and flies were unwelcome additions to the blazing sun. But I missed the friendships I had formed at RDA with both the staff and the horses. And I wanted to work with people with disabilities, to help them discover the pleasure of being on a horse’s back. Working at RDA probably increased my riding skills far more than did any of my private lessons. At the end of a class, the helpers were always allowed a ride, whether it was just in the arena or out in the bush. Bush tracks took us through areas of tall trees, blackboys and shrubs, a crater-like area of sand and rocks, and past a large grassy oval where we could set up jumps or have races. Marg, one of my favourite instructors, would send us on a bush ride with only a hessian bag kept in place by a strap called a roller, instead of a saddle. ‘Now you’ll have to trot all the way,’ she’d command.‘It’s very good for your seat and legs.’ The fact that it was torture doing sitting trot without the support of stirrups for the twenty or thirty minutes that it took to get around the shortest bush track didn’t even cross Marg’s mind. I liked Marg because she was a bit eccentric and because she respected us just as much as she expected diligence from us. She had long flowing brown hair, a loud voice and a large straw hat that always announced her arrival. When she asked for help on the weekends to clean tack, scrub down filthy horse rugs or pick up all the manure in the paddocks, I never hesitated, for Marg rewarded her helpers well with organised bush rides on weekends as well as rides after classes.

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Major arrived while Marg was working at the stables. He was a big black gelding who had spent some years as a pacer. Marg and I fell in love with him instantly because he was different. Major had a lot of hang-ups that made him difficult to handle. He was a nervous, timid horse who needed much patience. Major couldn’t ever be tied up or held tightly under the head. Sometimes he wouldn’t even walk across stretches of ground that looked different. On the days that I worked at RDA, Marg always assigned me to Major. She didn’t have to ask me, really, because I loved the big black gelding. His freaky ways never bothered me. He let me catch him when no-one else could. He had never bolted with me as he had with the other helpers. He walked quietly at my side on the lead rein, but planted his hooves firmly when being led by someone else. Whenever Major started to show signs of spooking during the classes, Marg gave him to me to take for a calming ride in the bush. I loved these times with just the two of us ambling along a bush track. Sometimes I would sing to him, sometimes just talk to him. In Major’s eyes I saw gentleness and trust. I often sat on the edge of his feed bowl while he chomped through his chaff and talked to him. He seemed to respond, occasionally nudging me, regarding me with soft brown eyes. The connectedness I felt with Major was one that I’d never experienced before, and thought I never would again. And that special relationship was proved to be a reciprocal one. One time I was with Major when he was being drenched. Drenching is the name given to administering a medicine that prevents colic, which, in horses, can be fatal. A

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tube is inserted directly into the horse’s mouth, which many horses hate. Major was panicking. Again he reared as, for the third time, the long tube neared his nostrils. The holding pen was small, the danger obvious. The vet threw his equipment out through the fence in defeat. ‘No, he’s not going to take it,’ he told Marg, who was organising the drenching of the horses from the Claremont and Capricorn groups. I had never seen Major quite as spooked as this, and I had never seen him rear. For the first time, I felt afraid of him. ‘Can you ride him back to the stables?’ Marg asked me. ‘I don’t want anyone else on him.’ On this occasion, Major should have been impossible to ride; his highly stressed state should have overridden any connectedness he had with me. Although Capricorn’s stables weren’t far away, I was dreading the ride back. The only route was along a busy road which we had to cross twice, a perfect recipe for disaster. I saddled Major, speaking to him in a soothing voice and stroking his tense neck to try and calm him. He snorted through dilated nostrils, shifting his feet anxiously. Mounting, I placed my feet in the stirrups firmly, preparing myself for a wild ride. ‘Just watch that black horse,’ the vet warned. I didn’t need to hear that. Gulping, I tried to smile. Major was skittish. I let him walk around, hoping to settle him. I felt as though I was sitting on a tightly coiled spring. Sue, another helper, was riding back with me on a grey mare. A third horse was ready to return too, but there was

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no-one available to ride him. Sue accepted the job of leading him from her horse. My hands were full. Marg opened the gate, her face creasing with worry lines. ‘Just take it slowly, girls. I’ll help you across the road and I’ll drive down and meet you just before the oval. So don’t cross without me.’ Sue took the lead. When the signal to cross the road came, she shot off at a fast trot. That hadn’t been our plan at all. In confusion, I followed at a steadier pace. On the other side, I lost sight of her. I could not see that her horse had taken off and was careering out of control along the busy road with the led horse in tow. Major kept to a slow trot, giving no indication of what was happening in front. Usually when horses take off, the followers do the same. After a little while, knowing that we should have been walking, I pulled Major up. Then, a brown horse with its lead rope trailing flew past me in the other direction. I instantly recognised it as ours and understood the situation. Turning Major around, I went after the loose horse. Marg had crossed the road already and had caught it by the time I reached them. Sue arrived puffing and panting on an excited and foamflecked horse. ‘She just took off!’ she exclaimed.‘I couldn’t control her. She’s really spooked.’ My fear rose then. If Sue couldn’t control her horse, how could I manage Major? ‘I’ll walk with you and lead this one,’ Marg said. ‘It’s okay,’ I heard myself say. ‘I’ll take him.’ Had those words really come from my mouth? Was I mad?

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As Marg handed me the lead rope, she looked me straight in the eye. ‘Are you sure?’ she asked. I nodded, swallowing hard. I just wanted this ride to be over. We set off again, this time with Sue wedged firmly behind me so that the grey wouldn’t repeat her last stunt. The cars flashed past us. The horse I was leading jogged nervously on my left. I kept the lead rein short, my knuckles turning white. The responsibility on my shoulders was great. I was controlling three horses now. It would only take one little thing to frighten one of them, sending us all onto the road. And my nervousness wasn’t helping. Horses are very perceptive of their rider’s confidence, or lack of it, and I certainly was giving Major every reason to bolt. ‘There’s a road to cross,’ Sue called out from the back. I saw the narrow road just ahead and immediately pulled up, sweat breaking out on my forehead. ‘You’ve got to tell me when it’s safe to cross.’ My voice was unusually sharp and angry. The tension was really getting to me by that stage. I uttered every swearword I knew many times over. We waited while a car approached the stop sign and then turned out onto the busy road. Major stood quietly: it was my other charge who pranced around restlessly. I could hear Sue’s voice trying to calm the mare as she nervously chomped on the bit just behind us. The mare’s closeness worried me too: not many horses tolerate another horse invading its space; any moment now, Major would either kick out or lunge forward. But his calmness surprised me. We didn’t have far to go now.

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My hands ached from gripping the reins and lead rope. Never in my life had I wanted a ride to end. But that day, I couldn’t wait to get back to the stables. When I saw Marg standing by the roadside, I let out a long sigh of relief. She took the other horse from me and placed a hand on my knee. ‘Well done,’ she said. ‘That was a really tough ride and you handled it.’ If it had not been for the special bond between Major and me, I thought to myself, the ending could have been quite different. Major was retired from RDA because of a back problem and he went to a farm where he could spend all his days grazing in lush green paddocks. It was only a few weeks after his departure that I heard he was dead. The farmer had apparently shot him by accident. I never found out exactly what had happened. But I made a vow to myself that I would buy a horse at the end of high school, and that he would be black.

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* My determination to own a horse the moment I’d finished with school and exams was so strong that my parents had no hope of convincing me to further my education. Giving weight to my obstinacy was the fact that I’d burned out while studying for my exams, and had not done as well as I’d hoped, failing English literature. There was no way I would repeat this torture in a tertiary institution. I never wanted to go to university and I told my parents this, flatly stating that I could never fulfil their ideal of their daughter getting a university degree. Entering the workforce held much more appeal, especially as I would be needing money to support a horse. Ben had arrived in my life sooner than even I expected. Rather than waiting until the end of high school exams, I had spent some of my study time poring over the livestock section of the classified ads in the newspaper. The ad for Ben excited me: ‘Black thoroughbred gelding, 16 hands, very quiet nature’. My strong desire to find another black horse in the image

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of Major meant that I only saw the word ‘black’ in the advertisement. I gave no thought at all to whether I wanted a thoroughbred. I simply had to go and see this horse. The temperature was forty degrees on the day that I dragged my mother out to see Ben. He stood in a black sandy paddock, his head drooping. From a distance he looked black, but up close the brown hairs on his muzzle gave him away. The ‘tall’ part of the ‘tall, dark and handsome’ image painted by the ad was also not accurate: Ben was about 15.2 hands high. The eager blond curly-haired man who owned Blackie, as he was called, assured us that this was a very quiet horse, even though he had been on the racetrack twelve months earlier. With a grin he dropped to his knees, crawled under the horse’s belly and out through his back legs to prove his point. The story about the fourteen year old girl who could ride Blackie in the bush bareback tugged at my gullibility. This was the perfect horse: he was quiet, black — well, from a distance — and bombproof. I was both brainwashed and under the influence of my impulsive nature. The end of high school was nearing. I had waited so long till the day I could buy a horse. My promise to my parents had been to finish my schooling before making the commitment. If I let this horse go, would there be another? So when I came to ride this perfectly quiet, supposedly responsive horse that a fourteen year old could handle, I was forced to make excuses for why I couldn’t make him obey my hands or legs. ‘Well, I could learn to ride him,’ was my best excuse. But it was Mum’s words that helped sway me even further towards irrationality: ‘He’s very quiet, Janet.’

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Mum was really concerned that I find a quiet horse and she liked the look of Blackie. The owner was pushing for a decision. Blackie might go at any time. Whatever hope my head had in winning the battle against my heart was dashed at this point. I bought Blackie, who became Ben, and broke every rule in the professional horseperson’s book. I did not take an objective experienced person with me to check out such things as conformation and breeding. I did not ask for a vet check before completing the deal. And I did not ask to have Ben on trial for a week or two before making my decision. Ben. I had always liked that name. My brother John used to have a dog called Ben, a collie that he’d found wandering along the beach. He had been dumped and was such a beautiful dog, so gentle and kind. But the mystery of his past had kept him wandering and searching, searching for something lost. This mystery had attracted me to him. The thing that backed wildly out of the horse float a week later at the agistment stables, its head tossing and its nostrils flaring, had me wondering if this was the same horse. This ‘quiet’ horse had a wild look in his eyes and danced around the bitumen snorting like a bull. The same joy I had felt all through my last school exam — which happened to be French and which had turned out to be my best result — at being the proud owner of a horse now disappeared. As the lead rope was handed to me, I wondered what I had done. Here was an ex-racehorse — his breeding unknown, his education severely lacking except in the area of racing at full tilt around a track — who, as far as I was concerned, was unrideable.

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But this crazy match turned out to be a special partnership, the memory of which I will cherish forever. A strong bond developed between us as time went by, to the point that I felt our minds were connected. Ben seemed to know what I was thinking when I was on his back, often preempting moves before I could give the command. And I certainly knew what he was planning and would be ready for the exuberant pigroot. Ben was a real ‘people’ horse, preferring the company of humans to other horses, and he particularly loved snuggling his head into me for a cuddle. He also loved following me around the paddock with his lowered head just inches from my back, pivoting quickly to catch up with me when I suddenly changed direction. He hated being clean and despised anything new: after a thorough shampooing, he would find the biggest manure pile and roll in it; when I bought new long black wellington boots, he would ceremoniously scrape my leg against a fence post soon after I’d mounted to ‘break them in’ by tearing the fabric. Ben’s cheekiness also showed itself in other ways. During a group lesson at the stables in Wanneroo where I was agisting him at the time, Ben revealed his higher intelligence. A large woman wearing a long khaki oilskin stood in front of me, her back turned, totally blocking my view of our riding instructor. Her size was emphasised by crossed arms and spread-apart feet planted firmly on the soft sawdust of the indoor arena. Her stance reminded me of a military person, the face screwed up in a scowl, the mouth ready to bark orders to a troop of soldiers. The rest of the class huddled with her in a tight circle.

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Ben stood quietly by my side. He was one of the two horses being used in the lunging demonstration that evening. While the other horse was out the front with the instructor, who was showing us how to fit some lunging gear, Ben and I had to stand by ourselves at the back. Ben shifted his weight so that the tip of his right front hoof rested lightly on the ground. His furry black ears were pricked as though listening intently to the instructor’s words. ‘Now, you need to be able to fit two fingers under here,’ the instructor was saying. Stretching up on my toes, I tried to get a glimpse of what was happening in front. But it was useless. Sighing, I dropped back to my heels and prepared to wait out the rest of the demonstration. Suddenly I became aware of a movement to my right. With great determination, Ben stepped forward, planted his nose firmly in the large woman’s back and heaved. The khaki arms shot out to the sides, her back arching as she was propelled upward and forward. A gasp escaped from her lips as she landed about four feet away, still upright on her thick legs. Ben stepped back and turned to me, his brown eyes gleaming. Cheekily, he nudged my shoulder. We now had a clear view of the demonstration. Ben’s mischievous ways along with the close connection he had with humans were traits that made him a very special horse. We had many fun times together, times when he made me laugh and other times when he would amaze me, leaving me wondering just how much he understood. Despite the special bond between us, our time together was destined to be

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short. And my attempts to keep the horse that I loved as part of my life in some way, however small, would be thwarted. After a year of hard work Ben was coming along well and I was getting admiring remarks from fellow riders. My focus was dressage, once we had made the transition from two speeds — walk and gallop — to four — walk, trot, canter and gallop. But Ben soon showed me he could do more than the athletic dancing movements that went with dressage. Bored with the curving loops we were trotting from one side of the arena to the other one day, he smoothly repositioned himself and angle-jumped the pole across the entrance to the arena. Once on the other side, he had effortlessly pivoted to avoid the fence right in front of us and cantered towards his stable. This had given me the idea that maybe Ben should be doing more than I could offer him. Eventing might be more his line, as this combined dressage with cross-country jumping and showjumping. I loved jumping, but my vision wasn’t good enough to get around a showjumping course, let alone a crosscountry course which wasn’t confined to an arena. I started to think about finding someone who would take Ben on a free lease arrangement and give him the opportunities I couldn’t. In this way, I could still keep the contact with Ben. Soon after that, I hit a crisis. I had just moved Ben to the stables in Wanneroo when I noticed the black splodges in my vision again. I had been free of retinal haemorrhages for about two years, and their reappearance frightened me. This time I respected my doctor’s advice to stay away from riding, and found someone else to exercise Ben. And that’s when the second crisis occurred. Ben fell while taking a corner at a

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canter in the indoor arena. Luckily he hadn’t done any major damage, but he was lame and needed to be rested for six weeks. Things turned for both of us. Just before the fall Ben had started to act up, becoming a bit of a rogue horse. I could find no reason for his change in behaviour, and had him checked by a vet. He no longer floated along at a canter or trot, instead pulling like a train and flinging his head around. Another bridle was tried on him with a severe bit, which I hated to use, but it made no difference. I was beginning to lose my confidence in being able to manage him. And when I was forced to stay out of the saddle and Ben was forced to rest — which only gave him a lot more scope to play up because he was bored and full of energy — the distance between us began to grow. When I eventually got the all-clear to return to the saddle, it wasn’t Ben’s I climbed into. A friend of mine had a beautiful black horse with four white socks and a long blaze who needed training. He was very young and very skittish. He was the sort of horse who would jump at his own shadow, and he needed a confident rider. For some strange reason I had no difficulty riding Sid. But Ben was another matter: I could not even think about riding him. It was only when my riding teacher, a Frenchman named Alain Jauffret, made a remark to me about this that I realised what was happening. He simply stated that Sid was a much more difficult horse to ride than Ben and yet I was managing him well. I had put up a psychological block that was preventing me from riding my own horse. There was one way to deal with it. I took Ben into the indoor arena and pretended he was Sid. I sent him out on a

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lunge line before I mounted him, talking to him all the time and calling him Sid. Once on board, I focused my mind on Sid and rode him as I would have ridden Sid. My teacher came into the arena with a young horse while I was there. He said nothing more than,‘Hello, it is Ben’, for he knew the barrier I was trying to overcome. The ride went well with no head flinging or pulling from Ben, and at the end I was able to call him by his name. Despite this breakthrough and the fact that Ben’s roguish behaviour seemed to have stopped after his six-week break, I still believed that he needed someone who could give him more. After a few failed attempts at finding a good home for him, I gave him on free lease to a young lad whose family had other horses that were obviously loved. The partnership was perfect. Mark and Ben became firm friends from the beginning and Ben became part of the family. Mark entered him in eventing competitions, and Ben was placed second at one show. But not long after that, the rogue in Ben returned. He began careering wildly around the dressage arenas, throwing Mark and bolting away. After sailing over a fence, he would buck, trying to dislodge Mark, which was unusual behaviour. A vet was called in and the problem discovered. Ben was broken down. He had been like this right from the time I’d bought him, the injury being the reason for his retirement from the racetrack. The problem probably wouldn’t have been identified at the time I’d bought him because of the year’s rest he’d had after leaving the racetrack. Once in heavy and constant work, the injury had recurred, a problem with his hip

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joint that would have been giving him a lot of pain. The six weeks of compulsory rest after the fall had given him some relief, but when back in work, the injury had flared up again. And that’s when the last bad thing happened. Mark’s family were being forced to move from their property and wouldn’t be able to keep Ben. They were devastated and so was I. Ben had to be found a good home where he could be ridden quietly part of the time, but could roam in paddocks for the rest. I thought I’d found the perfect home, but it turned out to be the biggest mistake I had ever made. I was to realise that I trusted people too much. Ben’s new home in the South-West was open for me to visit him whenever I wanted, his new owners told me. But once Ben had left Mark’s home, the tide changed. His new owners disputed the price that I asked for his purchase, resulting in heated words from them and a statement that I was not allowed to visit him. I then heard that they had gone against the advice to let Ben settle in for a few days before riding him, and never to gallop him. Ben had been galloped on the first day on a gravel road, the worst surface for a horse to be ridden on at a fast pace. Not to be deterred, I set out to find Ben. I could not desert him now — I just had to see him. The guilt I felt over my mistake, not to mention the feelings of sadness over our separation, was overwhelming. Having a good memory proved useful as the new owners had mentioned the name of their property and the nearest country town to it. With Mum’s help and some detective work, Ben was soon found in a bush paddock with other horses. We had to make sure there were no

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cars on the property and that no-one was around as we drove up, because of a sign we had passed which declared that trespassers would be shot. There were a lot of farms in the area, situated in a large piece of bushland well back from the main road and accessible only by lonely unmarked bush tracks just wide enough for a car. I made annual trips to see Ben until one day, about three years later, he was gone. All the horses had gone and the farm looked empty. I never saw Ben again.

* If my eyesight had not limited my career options, I would have become a veterinary nurse. Horses were not my only love: we’d had a dog, cats, budgies, guinea-pigs and goldfish during my lifetime. I had worked as a vet nurse when on work experience in year eleven and had fallen in love with it. The jobs I enjoyed most of all were keeping the animals’ cages clean, comforting them during examinations, and handing them back to their owners when they were ready to leave. What I didn’t like was having to hold a cat or dog as the vet administered the lethal injection that would induce sleep forever. My eyesight didn’t seem to be an impediment in carrying out my duties. The calibrations on the syringes were clear enough for me to see, but I always double-checked with one of the nurses any fluids I drew up. I could find my way around the various cages and kennels, being very careful to check the animal’s name before administering the treatment or supplying its feed. The only problem I encountered was

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finding my next patient in the waiting room when the receptionist used a pointed finger to indicate where the animal was rather than describing it. Then, I would end up with my rope around the wrong dog’s neck while its owner remained in her seat with a puzzled look on her face. The glowing reference I received from the vet probably scored me the interview for the veterinary nursing course at Bentley Technical College. I was one of only fifteen people from two hundred applicants to be interviewed for a place, but I couldn’t convince the panel that my eyesight was not a barrier. My childhood dream of wanting to work somewhere within the medical profession still burned deep inside me. But the majority of jobs available to me in this industry required qualifications achieved after years of study in university lecture theatres and laboratories. The closest I could get to an instant career which had a medical flavour was as a medical secretary. The six-week course posed no problems for me: I already had the typing skills and learning the medical terminology was easy. My subsequent work typing discharge summaries in a major teaching hospital opened my eyes to the fascinating sociological study of doctors and their various techniques of using dictation machines. Some doctors spoke clearly and precisely, detailing every bit of punctuation and spelling difficult medical terms and drug names. Others dictated at speed with no full stops or commas, and kept hitting the stop button before finishing their sentences. Probably the worst by far were the doctors who munched on their lunches while speaking into the microphone.

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My skills as a medical typist landed me a job at the local university in 1985, in the anatomy and physiology department. It was there that I exchanged my electric typewriter for a word processor and discovered the amazing world of computers. The word-processing program was modified so that the characters were enlarged enough for me to be able to read them. I was glad when my contract at the university ended and was quick to decline the offer of a renewal. It wasn’t the work that bothered me; it was the work environment. My office station was in a laboratory where researchers conducted experiments on chickens and other bits and pieces that were long past making a noise. My position in one corner of the long rectangular room made it impossible to block out the squawking of agitated chickens as one of their friends chanced its life under the scalpel, all in the name of science. Probably the scalpel wasn’t the main threat to the chicken; it seemed to be the anaesthetic that knocked them off. Or maybe it was just stress. At times when the lab was deserted except for me and the chickens, I yearned to let them out of their cages, to free them from their fate. When the experiments started on guinea-pigs, I realised I had to go. The next path I travelled down led me into the world of legalese as a legal typist. But I soon found myself bored with the jargon that my fingers constantly drummed out on the typewriter. And there was another problem. Most of the typing I did was on pre-printed forms which needed details typed carefully within the spaces throughout the text. It took me ages to line up the typing head with these spaces by peering through my magnifying glass. There was no room for error. A document

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lost its legality at the mere hint that liquid eraser had been applied. I resigned after a month under my own assessment that I was too slow completing the work, despite my boss’s continued encouragement. In the two years since finishing high school, all of my work had been casual, so it was with some trepidation and excitement that I accepted a permanent position as a general office assistant with the staff welfare section of the State Energy Commission of Western Australia. It was in this small office that I not only improved my administrative skills but also expanded my social life. We often went out to dinner at restaurants and had drinks on Friday nights. It was on these Friday nights that I got my education about alcohol. I had already developed a taste for gin and squash while helping on a camp for Riding for the Disabled at Spencers Brook, not far from Northam, when I was fifteen. We, the helpers, had been allowed to go to the pub under supervision to celebrate my friend’s sixteenth birthday. Also at the pub on that occasion were the SAS, who just happened to be staying nearby. There was no shortage of free drinks for us girls that night. Not being a drinker, I had asked for a lemon squash. That order had quickly been changed to a gin and squash by the very friendly soldier who was buying. He assured me I would really like it. Most of the men at the pub that night were very drunk and so I made sure the second glass stayed full. I had not had any more encounters with gin and squash since that time. And as I had consumed very little of it, I was totally unaware of its potency. It was while I was at the Sheraton Hotel having drinks with my workmates that I soon

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discovered it. There were six of us, and each person was buying a round of drinks. Naively, I kept ordering gin and squash, not being familiar with any other drink and not knowing about having water or something soft in between drinks. When it was time to go, I realised I couldn’t stand up. The look on my parents’ faces when I got home was unforgettable. Dinner parties were another aspect of life in this little branch. My cooking abilities were not so wonderful, but my admiration for the talents of my colleagues inspired me to improve in this area. My twentieth birthday was approaching and my parents were away, travelling in Europe. I casually remarked to one of the workers that I thought I might throw a dinner party and invite everyone in the branch and their partners. The idea was met with much excitement and soon I found myself asking each person about wines, cheeses and dinner party etiquette. Before I knew it, I had organised a fivecourse dinner party for eight people. My lack of experience in cooking just about matched my appalling knowledge of wines and cheeses. In preparation for the dinner party, my friend drove me to a drive-in bottle shop to get the wines. As the attendant’s head appeared at the driver’s window, my friend turned to me and asked what I wanted. I had spoken to the person designated as the office ‘wine connoisseur’ and gathered a few names. But only one came to mind. ‘Green Melbourne,’ I stated too confidently. I knew it had something to do with a capital city, and I thought the first name was a colour. My friend looked at me in disgust, turned to the attendant and asked for Queen Adelaide. Amazingly enough, the dinner party was a complete

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success. Even the pastry dessert, which had undergone some pummelling back into the flan dish halfway through the cooking of the base, had looked and tasted fantastic.

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RUNNING OUT OF TIME

* My life was changing in a positive way. My new-found independence at age twenty helped me to move out into my own unit and put my stamp on what I wanted in a home. I revelled in being responsible for my own place and furnishing it with the things I liked. Being away from home and my parents was absolute bliss, or so I thought. I could have friends over whenever I wanted, I could make phone calls late at night and play my music at any time and at any volume. I should have been happy. But I wasn’t. Deep inside I could feel a mixture of emotions burbling away that had probably been buried for some time. They would rise to the surface suddenly and unexpectedly, giving me strong surges of sadness, frustration, anger and loneliness. Deep loneliness, overwhelming loneliness. Perhaps it was because I was getting a taste for fun, for spontaneity and having a good time with friends who accepted me totally, that I felt this loneliness even more strongly. And perhaps, too, by seeing the way my friends

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lived their lives without limitations, I was made more aware of the things in life that would never be mine because of my disability. I couldn’t hide from my loneliness. Although I had new friends in my workmates, we didn’t see each other except for the times when we had drinks or the occasional dinner out. My weekends were full of space. There was only so much shopping and housework that needed to be done, and then there was just lots of nothing. I had only one very good friend from my school days who I saw as often as I could. But my shyness, my low self-esteem and the walls I had started to put up during high school had prevented me from having a group of friends. At high school I had avoided the things that teenagers did: the parties, socials and pub crawling. I had tried to find fun in these, but they had always turned out to be my biggest nightmare. I couldn’t see in the dark, nor could I rely on the only other sense that would tell me what was going on  my hearing  because of the booming music. I would have enjoyed myself more sitting in a dark cupboard where there were no eyes to witness my isolation. The spectre from my early high school days of being teased by boys was constantly shadowing me so that I avoided them. And I kept away from alcohol because of a fear of losing control: I had seen my brothers and sister blind drunk, and I hadn’t liked it. When I did brave it and go to a party, I would stumble around on my own, not knowing where anybody was, apologising when I kicked a body on the ground. My awkwardness and feeling of being different made it seem as though a spotlight was focused on me. Desperately I would try

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to find somewhere to hide, but there was never anywhere to go, especially not into bedrooms, which I thought would be empty and safe. With an embarrassed ‘sorry’ to the couple I had disturbed, I would continue my wandering, eventually finding a phone to ring my parents for a lift home. I never told any of my high school friends about the difficulties I faced, and so I was left to my isolation. But I don’t think that telling them would have changed anything: being a teenager is like being an alien, and I’m not sure that the quality of thoughtfulness resides in the adolescent who is struggling with their own confused needs and wants. Now, alone in my apartment three years after high school, my loneliness fought strongly with my independence and created havoc with my emotions. My parents were happy that I was living on my own, so they kept away to give me the space they believed I needed. My craving for both company and aloneness led to confusing and teary telephone conversations with them. Looking back, it was the typical adolescent ‘I want you, I don’t want you’ emotional tug of war that I was going through as a twenty year old. It was as though I had gone into hibernation during my adolescence, and was only now living those crazy years. My parents didn’t know what to make of me, and neither did I. All I knew was that I was terribly lonely and confined to the walls of my unit. I couldn’t just jump in a car and go for a drive in the countryside, lunch at a friendly roadside cafe and sit and look at a beautiful view, or hop on a bike and ride through Kings Park to lose myself in the tall trees and fascinating wildflowers. Life was hard, and I was getting tired of being dependent on others to do things,

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and of not being able to do what I really wanted. It was never my friends who bore the brunt of my sadness and frustrations: it was always my parents, and particularly my mother. Two good excuses sent me home to my parents a year after moving out, putting a layer of firm clay over my loneliness. The first was that I thought someone had tried to break in to my unit one night and this terrified me. The other was that I had decided to go to university and so couldn’t afford to live on my own. The decision to enter the world of academia had come from a growing dissatisfaction with my secretarial work. There were no challenges in what I did and I felt as though my brain was going to sleep. I thought I might have more potential and might just be able to survive the long and endless hours of study again. The benefit of working with counsellors was that I could turn to them for support in pursuing my ideal. And it was the support from them that gave me the strength to apply for a place at university and to tender my resignation at work. Leaving such a comfortable job and people I enjoyed working with would have been harder if not for another major factor. I was experiencing problems with my eye, which was constantly red, irritable and sore. A visit to my eye specialist revealed a new dilemma for which I was not prepared. My cornea was slowly degenerating — another long-term side effect of the radiotherapy — and it was reacting to the airconditioning in my office. In fact my cornea had become so sensitive that it would react to anything in the environment — wind, smoke, dust or pollution. So what was the solution this time? Stay away from airconditioning? Don’t go out on windy days? Stay away from the

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city and from people who smoked? Obviously I could not be isolated from life, but the solution to this particular problem wasn’t so straightforward. A corneal transplant was out of the question: the radiotherapy had done such damage to my cornea that trying to peel it off and replace it with another was extremely risky. It was better to try and preserve my remaining sight rather than to risk losing it. At first there seemed to be only one choice. A thin layer of my skin could be sewn over my cornea, acting as a protective shield against any nasties in the environment. The downside of this was that it would reduce my vision because even the thinnest layer of skin could not imitate the clear window that the cornea provided. These words had fallen on me like lead rain. I was not ready for a change in my visual world. Although I hated my thick cataract glasses more than anything else in the world, I had adjusted to them and the vision they gave me. I had been able to cope with my work perfectly well and was enjoying my independence. And now that I was facing a new challenge, life at university and years of study, I didn’t need to be adjusting to a change in my vision. The specialist’s next suggestion made me wish fervently that doctors were human. A pair of goggles would do the trick! My silence must have made an impression because he thought hard, then came up with another idea, one that was a long shot, but worth a try. A new contact lens had been designed for people with terribly damaged corneas who could not normally wear contact lenses. This lens provided the eye with a protective cover and eliminated any distortions in the cornea. There was

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only one man in the world who made them and he was in Perth. Not many eye specialists believed in this new contact lens, mine included, but because the other solutions were so poor, he felt I had nothing to lose. When I first saw this miracle lens, I thought that I would never be able to wear it. It was huge, the size of a ten cent piece, and curved into a dome shape. It had to be inserted under both top and bottom lids with the curved face bulging out over the cornea like a protective glass window. For the first few weeks I spent many hours with the optometrist, whose patience and determination far outweighed mine at times. My initial instructions were to wear it for a few hours a day just to get used to it. After I had mastered getting it in, I had enormous difficulty getting it out. It took a certain action with my index finger, upper eyelid and a simultaneous rolling upward of the eyeball to coax the lens out of its secure little nest. Finding the right fit for the lens took time too. My optometrist called my eye ‘a challenge’ in a tone of voice that was in no way disparaging. Rather it was a statement that described my condition and gave him something to work on, to beat. His belief that this lens would solve my problem must have conveyed itself to me because, after a time, I became efficient at inserting and removing the lens to the point that I didn’t like him doing it in case he messed it up. And, at last, I could hide my awful cataract glasses somewhere in a bottom dresser drawer, hopefully never to use them again. By the time I started university I pretty much had full control over my new contact lens that protected my cornea from irritants far better than glasses would.

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Although I had become interested in social work after working alongside the social workers in the staff welfare branch at the State Energy Commission, this area had not been my first choice when applying for a place at university. Instead I preferred the idea of studying law and justice. As a mature age student, though, I could not compete with the school leavers who quickly filled up the places in the arts degree that would lead me into law. Social work had come up on both the first and second round of offers. Reluctantly I had accepted the offer vowing that I would change over to law after one year of social work. It never happened. I got hooked on social work and never considered changing courses. Part of the influence on my decision was my growing understanding of the legal system through the social work course, and the many injustices within it. Before choosing a university course, however, I thought I’d do the right thing and speak to a careers counsellor. The experience was one I’ll never forget. The counsellor had leaned back in his chair, his legs crossed, and said: ‘You’re probably as pig-headed as all the other vision impaired people I’ve met and think you can study full time like anyone else. You know you can’t.’ That was enough to get the rebel in me really boiling, which happened whenever I was put into the category of being different or needing special assistance. And so it was with the help of the rebel that I completed my university course in the same time as everyone else and even managed to be invited into the honours program. Getting through the four years of study wasn’t easy, though. Taking notes in lectures was much more tedious for

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me than for everyone else. I had tried taping the lectures, but this meant spending hours each night typing up my notes. My tape-recorder added an unwelcome weight to my bag as I trudged around the huge campus, and I often went short of tapes that friends had borrowed and forgotten to return. Taking notes by hand had turned me into a contortionist as I grappled with the problem of low desks and my need to have my nose practically on the page. The library became a place I detested but had to endure. The frustration of hunting for books that other students had hidden wasn’t mine alone, but searching for books by running my magnifying glass over the Dewey numbers was a backbreaking and neck-straining exercise. The inescapable line of photocopy machines flashing blinding lights at robotic students dropping coins into slots would haunt me for years to come. So too would the hundreds of pages of pale, smudged and unreadable copies that ended up in the bin along with my despair. Without my mother’s help I could never have ploughed through all the reading. I’d also had to resort to volunteer readers. They fell into two groups: the first found the material so boring that we both went to sleep; the second were academics who actually understood some of the more complex literature and could explain it to me. People in this group were usually doing their own studies which gave them limited time. Mum struggled on without complaint. Being invited into the social work honours program had initially both surprised and delighted me. It was a newly developed program being piloted by the School of Social

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Work. But my time there was short-lived and my learning was more about departmental politics than how to conduct research. The three tutors assigned to the program held vastly different views on methods of undertaking research and were openly hostile to each other. After three weeks of witnessing this obvious attempt at sabotage, the twelve of us tried to resolve the issue by meeting with the department head. But our concerns were not alleviated. After a couple more weeks of enduring the honours classes where nothing was learned, ten of us made the decision to walk out en masse. Finishing my degree wasn’t all hard work. In the last year I chose to do my field placement in Wangaratta, a country town in Victoria. Students were encouraged to go interstate or overseas to gain more experience in their social work practice. My intention was quite different. For years I had heard of the beautiful mountains in Victoria, renowned for hosting the best horse riding in Australia. On television I had watched the legendary ‘Man From Snowy River’ rides held yearly in Victoria where man and horse used all their courage and ingenuity to race through wooded countryside and up and down steep hills. The mountain horses were sure-footed animals, I had heard, and thrived in the high country. My heart was set on experiencing this sort of riding, and so it was with no hesitation that I left for Victoria. Once in Wangaratta and amongst country folk, life took on a completely different pace. My normally fast walk had to be severely checked to keep in line with the relaxed atmosphere of country life. People’s attitudes were also quite different. There seemed to be more acceptance of people with

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disabilities. In fact, my work at the local council’s Aged and Disability Services section showed me just how much the town focused on improving access for people with disabilities in all areas of life. The local newspaper regularly featured stories on new initiatives and developments in this area. I was staying with an old school friend’s parents who loved the country just as much as I did. Not long after I arrived, I found myself breathing in the alpine air after driving to the top of a mountain. The change of scenery from lush stands of eucalypts to almost barren alpine plains as we drove up the winding roads was something I had never experienced. The best horse-riding spot was at a little place just out of Bright. Those rides were to be the most memorable and enjoyable I’ve ever had. The horses were well educated, responding to leg and rein without question. I felt safe in the saddle as we picked our way down stony slopes to creek beds and up the other side. The paths we followed took us through spectacular tall trees, along ridge-tops that looked down into deep valleys and through open fields of lush green grass. I felt at home in this country and privileged to be on the back of a real mountain horse. I became friendly with the guide, Webby, who often rode a young horse that spooked at every shadow. I soon learned not to ride too close behind him, especially if we were going at a fast pace. It wouldn’t take much for his horse to stop dead in its tracks at the sight of some monster, jolting the person behind out of a peaceful dreamy state. Webby was a real character, telling great Australian jokes and keeping the group lively. He

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loved his horses and would tell us stories of how he had made people get off their horses when they were rough with them. Webby could see how much I loved horses and the rides. After he’d checked out my riding ability on my first visit, he put me on a black horse called Nigger. Nigger went about with a frown on his face most of the time, according to Webby, but it didn’t bother me. He was a beautiful horse to ride, so responsive and so sure-footed. I became so relaxed on him that when everyone was walking, I allowed Nigger to jog, my feet slipped out of the stirrups, the reins loose in one hand. Nigger’s black ears, which occasionally did stay pricked rather than flattened, framed the beautiful alpine scene around us. In my mind there was nothing more picturesque than seeing a landscape between a horse’s alert ears. Webby noticed my confidence on a horse, and acted on it. On one ride, when the group mostly consisted of beginners, he beckoned to me to peel off with him to take the fast track home. Together we walked down an almost ninety degree slope, then cantered along ridge-tops all the way back to the stables. I was in heaven. My practicum work with the elderly in Wangaratta led to my first paid job as a social worker in a nursing home back in Perth. Most people recoil from these places. They see them as the end of the line, places where the old and infirm are dumped to await their inevitable fate. To me, the elderly never cease to teach us with their wisdom and experience. My grandma had imparted to me much of her wisdom on financial matters and her knowledge of life throughout my

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formative years. These enlightening sessions often took place in her small kitchen as she pottered around. I remember how she would stand at the kitchen bench in her scuffed burgundy slippers cutting yet another round of chicken sandwiches. My protests of having eaten too much already would be met with an automatic response of ‘y ... essss’, which was an indication that she was not listening and knew better. She’d carry the crustless, perfect-as-always sandwiches to the table which was already laden with plates of biscuits, cakes, Grandma’s special nibbles and fruit. Silently I’d chastise myself for not remembering that to take the last morsel from a dish meant, to my grandma anyway, that the dish must be refilled. And remarks such as ‘I’ll get fat’ were powerless to halt the constant stream of food. At last she’d sit down and my frustration with her overnurturing nature and her lack of consideration for herself would subside. The kitchen had a 1920s gas stove in one corner, mats on the floor in front of the sink to hide the tears in the lino, and a pair of rusty, recalcitrant taps. The new hotwater system came to stay only after much persuasion and insistence by her family that running hot water was a basic necessity, and that cold showers, particularly in winter, were not advisable for an eighty-nine year old. The only other purchase she reluctantly agreed to, just a couple of years before that, was the washing machine which replaced the antique one with the wringer. The clock on the wall above the table was always five minutes slow and the tablecloth with its floral border was stained with age, as were her clothes. But the sight of her soft, plumpish face with its clouded

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blue eyes on the other side of the table immediately erased all worrying thoughts. Her ever-present love transformed this antiquated, uninhabitable kitchen into a warm and friendly haven. Her gentle laugh and wise comments created an intimate atmosphere where my secrets and troubles could be released. She always listened intently and thoughtfully, sometimes proffering a solution to my woes a week later, so deep was her concern for me. My problems had been unburdened many a time within those four walls. I remember plopping myself down in my favourite kitchen chair one day, my dog at my feet, tears streaming down my face. My parents were touring New Zealand, leaving me and my brother John to look after the house. I miserably told her how John didn’t like my cooking and wouldn’t put the rubbish out when I asked him. ‘How much French onion soup mix did you use with the lamb fillets?’ she asked. ‘The whole packet.’ ‘Ah, well. You probably didn’t need quite that much,’ she said kindly. In fact my brother had very politely eaten his overseasoned dinner, despite the mess I’d made of it. On that occasion, after a glass of soothing pineapple juice and some cake, she filled an ice-cream container with her special chicken casserole which my mum could never reproduce, and drove me and my dog home. As we neared my house, she said: ‘You know, you really are a perfectionist. That’s your problem.’ A couple of days after that I was sitting at work typing when something made me look towards the door. My grandma

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stood just outside in her beige raincoat clutching a bulging plastic bag. She wouldn’t come in, saying she didn’t want to bother me, but that she was worried about me. ‘Would you like to come and stay with me for a while?’ she asked. ‘If you’re still having problems?’ I quickly thanked her for her concern but declined the offer. Nodding, she thrust the plastic bag into my hands. ‘Just thought you could do with a cooked chicken. Have you got a fridge to put it in?’ My grandma to the rescue, as always. Her unexpected death in her ninety-first year brought me to yet another crossroad. My grandma meant so much to me that her departure left a huge hole in my family unit. Now I had a choice: either I allowed myself to be sucked into the deep chasm that gaped temptingly in front of me, or I could leap over it to the other side. My grandma was in hospital when I began toying with the idea of travelling overseas alone. I didn’t know she wouldn’t make it out of there. My life was in a rut. I was twenty-eight years old, single, and had travelled only as far as New Zealand. The stereotypical young Australian had backpacked around Europe well before this age. My achievements at university and in my work meant nothing to me. I felt unfulfilled. And time was running out in another way. My eyesight had deteriorated enough for me no longer to be so sure of myself. Crossing the road now took more than one glance to find the kerb on the far side. I had to peer carefully towards the other side for several seconds before identifying it. Window

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shopping had lost its attraction because my vision could not tell me what I was looking at. And reading was difficult and slow: the print on the pages seemed to have shrunk and the darkness of the print dictated my book selection. If I was going to travel, I needed to do it now before my sight worsened. ‘Is Janet going to Ireland by herself?’ my grandma had asked my mother in the hospital — even her ill health could not stop her from thinking about others. I had told her about my yearning to visit the Emerald Isle, about my magnetic attraction to the mythical legends and my wish to soak up the beauty of the country. After she died, a strength whose source I dared not question strode with me as I completed my plans. I knew that my grandma’s spirit would travel with me as I explored the beauty and mystique of Ireland, Scotland, Wales and England.

* My decision to travel to London for a Contiki tour of Great Britain and Southern Ireland had felt so right up until the last moment, but cold feet hit me at Perth’s international airport. Every doubt, every criticism I had of my abilities, attacked me all at once. Mum’s brave smile and encouraging words could not stop the tears as we parted. Then, as the plane screamed along the runway, determination began to burn inside me once again. It was a familiar feeling, a sense of power that I’d thrived on for the last few months, since my grandma’s death. Isolation closed in again when I arrived at the hotel in London. Gone were the comforts of getting special treatment

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by the airlines for being vision impaired. Here was a large hotel lobby cluttered with groups of tired travellers sitting on bags while waiting for their rooms. The dim lighting together with the dark blue carpet made identifying things around me impossible. The staff behind the endless counter were plastic and mechanical. There was no chance of them doing anything more for the customers than was absolutely necessary. It was time to swallow my pride. Removing the folded white stick from my backpack, I released its elastic strap and shook it out to its full length, giving it life. I never thought that I would need a cane. As a child, well-meaning professionals had taught me the art of using a white cane to give me both security and confidence while moving around. But I had felt stupid tapping my way along the footpaths when I could see perfectly well where I was going. It had made a great perch for my budgie, Tiger. He used to sit on it in my bedroom when I let him out of his cage for exercise. Over the years I had lost track of it. Then, while cleaning out a cupboard, I found it and sneaked it into the rubbish bin while my mother wasn’t looking. But I had to face reality if I wanted to travel alone in an unfamiliar place thousands of miles away from home with eyesight that wasn’t so good anymore. Before leaving Perth, my new cane and I had self-consciously tapped the pavements around my home and in the city with my mobility instructor, Dave. Dave gave my white stick an invisibility that I could not achieve. He soothed my highly strung nerves with constant chatter. But despite his calming effect, the fear of being seen by friends or neighbours constantly shadowed me.

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In London I had no choice and no-one I knew could see me anyway. The stick proved to be a good guide through the hotel lobby, warning me of bags, steps and invisible pillars. Later it stopped me from tackling busy London streets on my own: the British were only too happy to lend a hand. One bus driver kindly gave me a complimentary ride back to my hotel from Piccadilly Circus, rather than let me wait for the scheduled bus. Although I could see the benefits of my stick, I still felt some embarrassment. When I met up with the tour group on my second day in London, the stick was relegated to the bottom of my backpack until the end of the tour. My overseas trip gave me more than just the experience of other countries and travel. It gave me more confidence in and acceptance of myself. From the first day I had been amazed at the group’s attitude towards me. I was seen as one of them: there were no questions about whether I should be there or how I would manage, no concerned looks or nervous attempts to help. And yet despite being treated just like everybody else, I received help offered unintrusively right through the tour. I would be striding along a pavement in Wales or Scotland, unknowingly approaching a flight of downward steps, when five arms would suddenly grab at me accompanied by the warning cry, ‘Steps!’ But overconfidence can lead to poor choices and regrets, as I was to discover. One hundred and thirty feet of sheer rock face was no place for a beginner to learn abseiling. I had strapped on the harness and donned the hard hat in complete ignorance. The instructors had chosen not to tell us the size of the drop to the

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quarry below. It was only when you got over the edge and were on your way down that you realised just how high up you were. My right hand, the one strangling the descent rope, was starting to burn. I stopped for a breather, trying to recall the correct positioning so that I could relax. Oh God, what was it again? Feet apart, right hand bringing the rope behind my back when I stop, or should it be by my side? My knees were threatening to buckle: I had to concentrate hard to keep them straight. They had promised it would be no strain on the arms, but mine were aching. I couldn’t believe it. There I was in the Lake District, in the United Kingdom, with two ropes stopping me from plunging to my death. Was I mad? The safety line attached to my harness gave an ominous groan. Anxiously, I looked up to the top of the cliff. ‘You’re halfway down,’ came a shout that was supposed to be reassuring. Another groan from the rope and I needed no further encouragement. With a wildly pounding heart and dry mouth, I started the backwards descent again, faster this time. With guidance from the instructor below, I managed to keep on a fairly straight path to the bottom and to the welcome feel of terra firma under my feet. Waiting for me there, as promised, were Marcos and Jackie, two of my new-found friends on the tour. There were tears of relief and hugs all round. We vowed never to abseil again. I was greatly touched when one of the group announced his admiration for my courage in joining the tour.

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Murray was supposed to be introducing himself to another group that had joined us on the Ireland leg of the tour. Instead, he stood at the front of the bus, holding on to the rail as we negotiated the roller-coaster roads of Ireland, and spoke about me. He said how brave I was to travel all this way as a legally blind person, and come on this Contiki holiday. He went on to say how well I fitted in, and how much he admired me. Not being one to accept compliments, I had hung my head, hoping no-one was looking at me. But the gesture gave me a lovely warm feeling. Not everyone accepted me in this way, though. One lady, who I had the misfortune to share a room with, made it clear that she thought I had no right to be there. Ironically, she was a nun who had recently been dismissed from her order. She was an incredibly angry woman who spoke negatively about the tour in general, and about most of the people on it. So I shouldn’t have been surprised when she made her feelings known to me. I ought to be on a tour with vision impaired people, and why didn’t I find out about them? she had grumbed. Luckily this comment was made on our journey back to England on the Irish ferry, our tour’s end, and I didn’t have to put up with her attitude for long. On the whole, the ashamed feeling I’d had about being vision impaired had begun to fade as I made my way back to Australia.

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CHAPTER 7

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* My knife hovered above the thick fillet steak bathed in orangeflavoured hollandaise sauce. I looked at my father in surprise. His eyes were sparkling behind his glasses. ‘What did you say?’ ‘We thought we’d wait until you turned eighteen,’ he repeated. ‘Then we’d tell you about your natural parents. We know their names.’ A hush seemed to descend upon the restaurant in the Park Royal Hotel, the venue Dad had chosen for my eighteenth birthday celebrations. I no longer noticed the elegantly dressed waiters with white linen napkins draped over one arm as they breezed past on the plush red carpet. The small box on the table which contained the silver bracelet bearing the Libran birth sign momentarily lost its power of distraction. ‘How do you know who they are?’ Dad excitedly told the story of the sympathetic social worker who had come to our home to prepare the final

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documents for my adoption. She had been ahead of her time for the 1960s, believing in freedom of information rather than the secrecy of adoption. Instead of openly disclosing the identity of my natural parents, she had walked to the other side of the lounge room to see my sister, leaving my confidential file open at the relevant page. Dad had wasted no time in studying and copying down the names and addresses that the page revealed. I listened, riveted, as Mum and Dad unveiled the names of my natural parents. It was my natural father’s name that shocked me. Numbly, I asked for it to be repeated. Only after the third repetition could I hear it clearly, as though I had suddenly surfaced from the bottom of a swimming pool and cleared the water from my ears. The image I had held of my natural father was a blurred, almost non-existent one. And now, hearing his name, his face was brought into sharp focus, a face so familiar, one that I had observed for so many years. The blurred image of the stranger, the irresponsible adolescent who had contributed to my existence, vanished. ‘Would you like to find them? We’ll help.’ Dad leant forward slightly in his chair, his eyes fixed on me. He had stopped eating. This was unusual for him. Although being adopted had never worried me as a child, the blankness that was my past could not be kept buried forever. The rumblings of curiosity, wondering and uncertainty started in my teenage years. The gap in my past first made its presence felt with the increasing exposure to hospitals and doctors. When the questions about my family medical history kept coming and

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coming, I began to feel uneasy and perturbed. ‘Is there a history of cancer in your family?’ ‘Does anyone in your family have an eye condition?’ ‘What other medical conditions are there within your family?’ I could not answer these questions. My response was always the same, a blank look and the hollow words, ‘I don’t know. I’m adopted.’ I began to wonder about my eye condition, whether someone else in my natural family had had it, or something like it. And what could have caused it? Was my natural mother exposed to chemicals? Did she have an illness that might have contributed to the genetic mutation? The more I pondered these questions, the more I wanted to know the answers. The gap that had started to grow was like a black hole that kept drawing me in. There were other things I wanted to know. Who did I look like? What did my natural parents do for a living? What were their talents? And when I became a mother, would I have a normal pregnancy and delivery? And what about my background, my ancestors? When my friends discussed their family trees, boasting about a Scottish grandmother or a French great-uncle, I would feel left out. I knew nothing of the blood that flowed through my veins. Once I saw a woman with the same colour hair as me, wearing an identical skirt. She smiled at me. Instantly my mind leapt to the possibility that she might be my natural mother. Was she looking for me? Did she think about me? And then there were the career questions. Most kids know what they want to do, who they might want to be when they grow up. As a young child there had been no doubt in my mind about my future. I was going to be a nurse who would care

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for all the sad and lonely children in hospital. At such a tender, innocent age, the barriers to my career paths were invisible. To practise my future profession I would line up all my toys on the floor, with my teddy bear at the head of the line, and drip water from an eye dropper into their unblinking eyes. With a tissue, I would gently dab at the flood that washed down their faces. Of course, both eyes required the eye-drop treatment. But as I progressed through high school, the dream of becoming a nurse began to fade as the reality of my vision impairment set in. At the same time, a persistent niggle about who I was and where I was headed began to trouble me more and more. During recess and lunchbreaks I listened quietly as my friends discussed their parents’ talents and what they shared with them. I had no idea what my talents might be. I had no clue about which direction to take because of the blankness that lay behind me. There was no foundation on which to build my identity, and I wasn’t strong enough to do it on my own. So when the chance came to discover my past and my identity, it all seemed too good to be true. The answers to my questions were now so close and I was blind to the barriers that might stand in my way. I could not even begin to understand the complexity and sensitivity of the adoption area. To me it was straightforward: I needed to know who I was, and I wanted to reassure my natural mother, the woman who had given me away, that I had a loving family and that her decision had not affected me. With these naive assumptions about rights and needs, I made a phone call to a mediation agency shortly after my eighteenth birthday.

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When the mediation agency phoned me only about a month later, I was caught off guard. Although I had my natural mother’s name and her address at the time of my birth, I did not expect to hear of any results for some months. I had registered my details with the agency with such a delay in mind and had not thought about it since then. So I was surprised when the call came to inform me they had found my natural mother, and to ask me if I wanted a meeting with her. Thinking that my natural mother had already been approached and had asked to see me, I agreed. Although I wasn’t sure what I really hoped for in this initial meeting, I knew I wanted her to know that I had been well looked after. But another call a few days later revealed the opposite. The agency had just made contact with my natural mother by telephone and she had denied our relationship. The next few weeks were a nightmare. Her rejection of me sent my emotions into turmoil, as though being put through a washing machine, tumbling around, knotting and tangling together. I entered the final spin cycle when she confirmed our biological connection and summoned me to an urgent meeting in Kings Park the week before Christmas, about two months after my first phone call to the mediation agency. This was to be our one and only meeting. I studied the woman sitting next to me on the wooden bench. She wore dusky pink pants, a white T-shirt and white sandals. Unlike me, she was very suntanned. ‘I can’t stay long,’ she announced. ‘I have to pick the kids up from school.’ A pang in my stomach that I recognised as guilt made me drop my gaze to my hands. For so long I had wanted this

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meeting, but now I was not so sure. Tracing my natural mother had been easy, maybe too easy. Maybe if it had taken longer ... ‘How old are you?’ ‘Eighteen,’ I answered. Another pang, stronger this time. Shouldn’t she know that? ‘I wanted to let you know that I’m really happy. I’ve got wonderful parents, a sister, two brothers,’ I said quickly. ‘I thought you’d like to know that I’m alive and well.’ Her response was quick and sharp. ‘Oh, no. I’ve never thought about you.’ A barrier descended to protect me from the invisible blow. I felt nothing. The conversation somehow turned to our similarities. With amazement I watched as the connections were made, as the pieces began to fit into place. Suddenly things began to make sense: my flair for netball that had been noticed at high school, why the smell of rockmelon repulsed me so much, and my love of animals. All too soon, our time was up. She had to leave. ‘My husband and children don’t know about my past. I can’t tell them . . . I’ve got a happy marriage . . . I’d hate anything to happen.’ Tears started to fall from her eyes, caught by a tissue clasped in a trembling hand. ‘Don’t ask me who your father is, because I won’t tell you.’ ‘I know who he is,’ I replied quickly, and repeated the name my parents had given me. She gasped and reeled back slightly. ‘You must never try to find him,’ she spluttered. ‘I never told him about you. You must never try to contact him.’

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Silence fell between us. Not even the birds seemed to be singing anymore. The clasp on her purse snapped shut as she rose from the bench. ‘Can we leave things for a couple of years? Maybe then ...’ The sunglasses went on to hide her reddening eyes. Two years ... four ... six ... eight ... Two weeks after the meeting with my natural mother, rejection hit me and I found myself in a deep dark hole. The shield that had been protecting me during the meeting had dropped away, allowing the words that had not hurt me at the time to find their way in. Like knives stabbing at my heart, the words, ‘I never thought about you’, ‘You’re nothing like me’ refused to leave me alone. With deepening despair I realised my natural mother’s focus on our differences had far outweighed any acknowledgement of our similarities. The number of times I heard the words ‘You must have got that from your father’, ‘You’re more like your father’ ... Making contact with my natural father was not an option and, in my mind, never would be. He was a well-known personality, always in the public eye. When I learned of his identity, I had allowed myself to fantasise about meeting him only for a short time because, in my mind, the reality was quite different. There was only one possible response to any approach to him with the claim that we were related — the issuing of a law suit. The mere thought of it terrified me. Even with Dad’s offers of help and his ability to be discreet, I could not be convinced. I knew I would never meet the man I had come to know through the media, the man I had secretly idolised, the man whose career I had followed for as

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long as I could remember, without any influence from my parents. How my parents managed to keep quiet during the countless times I had sat glued to the television when he was on, and when I had insisted on buying every magazine that hosted stories about him, must have required an extraordinary effort on their part. The fact that my natural father did not know about me was news to my parents. They had assumed that, as his name had been on the social worker’s file at the time that I was adopted, he must have known. When I was very young my dad had met my natural father through his work at the museum. He had tossed around the idea of telling him that he had been the one to adopt me, to relieve my natural father of any curiosity about what had happened to me. But he had decided it might not be the right thing to do, and so had stayed quiet. After learning that my natural father had no knowledge of my existence, Dad was glad that he’d said nothing. About a month after the meeting with my natural mother, a card arrived for me from an address I did not know. The sender’s name on the back of the envelope made me hold my breath. It was my natural mother’s maiden name. Opening the envelope, I read the message from my natural mother’s parents. The words were warm and friendly. They said that they were looking forward to seeing me soon. I felt confused: these words were saying something quite different to those of my natural mother. Had something changed? From the card, I assumed that they would be in touch with me very soon. And so I waited, and waited, and waited, until the slim glimmer of hope that had infiltrated my dark hole fizzled away. Not once

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had I given thought to the disappointment at the other end when the long-awaited response never arrived. It was six months later, in mid winter, when I finally met my grandparents at their house. My natural mother was not there. This meeting was so different to the one I’d had with her. There had been no hesitation about me coming to my grandparents’ house, no fear about who might see me there. And the invitation was extended to my parents as well. My natural mother’s sister also wanted to be there. I was welcomed with open arms by people who would later provide a steady foundation in my life. Sitting at the kitchen table laden with cakes and biscuits, I listened with amazement and a touch of sadness as their story unfolded. I heard how they had wondered about me for years and years and how they lived in hope that I would make contact. When they received a strange phone call asking for their daughter by her maiden name, they guessed the real nature of the contact. When the approach had been made to my natural mother by the adoption mediator, they had been overjoyed. At last they were going to meet the grand-daughter they had never wanted to lose, the grand-daughter who had nearly been brought up by their other daughter. If my aunt had not been six months pregnant at the time, an intra-family adoption may have taken place. With astonishment, I heard that it had been their hard work that had made my natural mother change her mind and agree to meet with me that one time. My still tattered emotions were being put through the washing machine yet again. The warmth and acceptance were

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so genuine that I found myself feeling overwhelmed. I had been so shocked and hurt from the meeting with my natural mother that this new information was almost impossible to digest. I left their house with conflicted emotions. Part of me wanted to run from my new-found family, and part of me wanted desperately to belong. I was frightened of losing something, or perhaps I was frightened that the stinging words would suddenly appear and destroy my illusion. I was more mixed up now than I had ever been and so I retreated to a safe place, my home, to work things out. It took time and courage for me to step out of my haven and test the genuineness of this new relationship. At first I kept my distance by writing letters to my grandparents. As each reply came with the same warmth and interest, I began to feel ashamed that I had not repaid their hospitality in kind. After a couple of nervous phone calls on my part, I gathered all my courage together and invited them to afternoon tea at my house. This was the beginning of many get-togethers at cafes, restaurants and each other’s houses. Not only were my grandparents open in expressing their dismay that they had not been able to convince my natural mother to come on these outings, but they were also open to discussing family matters with no hesitation in viewing me as one of the family. It was after a couple of these meetings that I was able to drop my guard and trust the unconditional acceptance that flowed from my extended family. I could see that my grandparents were hurt by their daughter’s behaviour, and so it was to my aunt that I turned on many an occasion to seek information about my

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natural mother and her children, my half-siblings, and to seek answers to my many questions. In a way I found my aunt to be more like me than my natural mother. As our relationship developed and grew stronger, I discovered that these two women, these two sisters, were almost opposites. My aunt was level-headed, sensible and strong when she needed to be, whereas my natural mother tended towards volatile and dramatic behaviour, and seeing things as black and white. There was obviously some tension in their relationship which was only intensified by my presence. My aunt made it clear to her sister from the beginning that she would not collude with the veil of secrecy and denial that my natural mother had dropped down to protect herself. She was going to keep in contact with me, and nothing would get in the way of our relationship. I liked my aunt very much. In the years ahead, we would share intimate information about ourselves with each other, and would support each other in times of crisis. Family secrets may have their place, and I never contemplated challenging my natural mother’s way of thinking. If she didn’t want her husband and children to know about me, then that was the way it would stay. But sometimes secrets can be destructive and cause a great deal of heartache. The full impact of secrecy hit me when my biological grandfather died just eleven years after we’d first met. I had spoken to Pop, as I called him, on the phone for his birthday a few months before he died, but hadn’t had the chance to visit him. Visiting was always difficult: I had to check that the coast was clear, that no-one would turn up who wasn’t supposed to know about me. My wariness wasn’t entirely shared by my

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grandparents. During that phone call my natural mother arrived at the house. Pop excused himself to let her in, and in the background I could hear her ask if he was on the phone. Pop made it clear to her who was on the other end of the line. Despite the defiance in Pop’s voice, I felt some fear in the bottom of my stomach. I didn’t get to see Pop before he died. He was admitted to hospital for some tests. Unfortunately, I wasn’t at home to receive the call from my aunt telling me that he was in hospital. If I had known, I would have taken the risk and gone to see him. The thought of encountering my natural mother in the hospital corridor, either by herself or with her family, would not have fazed me. Pop did not make it out of hospital. I got the news the day after his death. The shock and great sadness I felt about losing such a special friend was immense. Pop was a very gentle, caring and warm man. We had spent many hours in intelligent conversation about politics, sport and life in general. He had taken great interest in my life and career path. As the years passed and age caught up with him, there were often tears in his eyes when I left after visiting. My aunt thought that he was frightened of not seeing me again, believing that each visit would be the last one. The news of Pop’s death wasn’t the worst shock for me. There was another more disturbing message. The funeral had been arranged quickly and it was to be private, family only. And that didn’t include me. To soften the impact of the message was impossible, despite the reluctance and sorrow with which it was delivered. I felt as though I had run straight

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into a solid brick wall which stretched for miles on either side and was too high to climb over. There would be no negotiation, no conciliation. The chance to say the goodbyes that I needed so desperately to say would never happen. For the first time I felt real anger and rage at my natural mother, who I believed had dictated the situation. Because of her selfishness, her paranoia, I would not be able to go to the funeral, shed my tears and recall old memories of happy times with the people who had shared in my Pop’s life. The injustice was too much to bear, and yet I was helpless to change anything. On the day of Pop’s funeral I sat at our kitchen table, the flickering flame of a candle symbolising the life that had been lost. My mum sat with me, listening to my pain, my anger, and finally sharing in the happy memories. And when I was ready, I blew out the little flame and watched as the smoke drifted gently skywards. The contact with my natural mother’s side of the family had given me the connection with my roots that I’d never had before. But it wasn’t enough. Half of me was still missing. And yet that half, the other half, was off limits: I had convinced myself that I had no right to intrude into my natural father’s life, and that I should never even think about doing so. Perhaps it was my natural mother’s ‘second rejection’ of me — which was how I saw it at the time — that triggered the feelings of confusion and longing for acceptance from my natural father. These feelings intensified as I kept telling myself that I could not approach him, and as I struggled with trying to forget the magnetic attraction that I’d had towards him ever since childhood. The strong belief I held that I should keep his

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identity a secret had kept my lips firmly sealed. Not even my brothers and sister knew my natural father’s name and it would be years before I would tell them. In fact, I didn’t talk about my search and reunion experiences to them. Perhaps it was because they didn’t live at home: my sister was in Karratha, John was in Queensland and Mark was the only one living in Perth. I remember mentioning in passing something about my natural mother to John over the phone, to which he responded that it was best to let sleeping dogs lie. None of them seemed interested in discovering their origins at the time, but whether it was my search or something else that triggered their curiosity, they would all meet their families successfully in years to come. But all this secrecy and suppression of my feelings was too much to bear. The tug of war that was silently going on inside me finally reached the surface and I found myself sitting in a counsellor’s office with tears streaming down my cheeks. Because of his public image, there was no escaping his face, his name, stories about him in the media. It seemed as though every time I turned on the television or opened a magazine, his face would be there, although it probably wasn’t as frequent as I imagined. It didn’t need to be: any mention of his name added another weight to my heavy load until I could not take it anymore. I had gone to the counsellor who specialised in adoptions, seeking help to stop the strong feelings that I was having, the sadness, the longing, the wondering. After she had heard my story, her response surprised me: ‘It’s perfectly natural for you to feel this way. You’re being tempted all the time and why should you resist the temptation?’

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For me, there had never been another option. The subject of contacting my natural father was firmly closed. He did not know about me, for one thing, and he probably wouldn’t believe me. The consequences were frightening. But it had been three and a half years since I’d met my natural mother, and she had not changed her mind about seeing me again, or about having any form of contact. Maybe my natural father did have a right to know that he had a daughter. Would the dream I’d had a few nights earlier really come true? In it I had met my natural father. I had been half sitting, half lying on a couch as though I had just woken up. The dream had been short, but the images very clear. The most vivid thing had been my age. In the dream I was twenty-two and a half years old. That was just over a year away. At the end of the counselling session I had decided to take the risk and try to contact my natural father. I needed to put things to rest, to resolve my confused feelings and get on with my life. I wondered if I could have pushed my natural father out of my mind if he had been a nameless or faceless man, a man that I had not seen or heard anything about over the years, a man whose career I had not followed closely. This question would never find an answer.

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SIMPLE WISHES

* Although I knew nothing would be simple or straightforward about making contact with my natural father, I was not prepared for the turbulent months that would follow. As the utmost discretion and care were needed in making the initial contact with him, I chose to employ the services of a mediation agency. For a reason I cannot recall, I did not opt to use the counsellor who specialised in adoption. Instead, I returned to the agency that had located my natural mother. And that was my mistake. I was to find out years later that this agency’s mediation practice was far from professional, that phone calls and letters contained emotionally charged and manipulative language that made it impossible for my natural father to refuse any contact. But I was ignorant of the games that were being played, and remained blissfully naive during the entire time. After the mediation agency had made the initial contact, I eventually received a letter from my natural father. It was a

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friendly letter, asking for more details about me and photographs. One of the photographs he was seeking was of my natural mother, who he claimed to have difficulty remembering. This I could understand as my natural parents had only had a brief relationship. I spent days agonising over my response to this letter. Everything in it had to be perfect, no typing or spelling errors, not too silly or too serious. I wanted to be honest about my eye condition, but I didn’t want to emphasise it. And I made very sure that the photographs Dad took of me were half decent. Finally it was done and I posted it off. The days dragged by as I waited for the return post. After two months I began to wonder if he’d given me a bogus address. Maybe it was his solicitor’s address? And after three months, I couldn’t stand it any longer. The need to know whether he was interested or whether he no longer wished to pursue things was consuming me like an out of control bushfire. My second letter asked simply what my natural father wanted to do, as I had not heard from him. Like the first, I almost oversold the option of him terminating contact, reiterating that it was perfectly understandable and that it would not be a problem for me. Again I waited. Again there was no response. About a month later I flew to Melbourne for a weekend conference. On the Monday night, the day before my return to Perth, a phone call home revealed the exciting news that a letter had arrived for me that day. But when I got home and read the letter, I discovered that I had missed an important opportunity. My natural father had been in Perth over that weekend and had invited me to contact him at his hotel. But the letter had arrived

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too late anyway: his plane had departed the same day that it had reached my letterbox. I wrote back enthusiastically, joking about how such a thing could have happened, that I would be out of Perth the one time he was over. One month, two months, then three. Three months seemed to be my limit. At three months my emotions took hold, pulling me in every direction and whipping up a large cloud of confusion. I went back to the mediation agency for advice. What should I do? Give up? Write another letter to find out where I stood? This time the mediator suggested she write the letter, an offer I accepted gratefully. The letter prepared by the mediation agency was read out to me over the phone before it was posted. But my confusion and naivety stopped me from hearing the words. The only sense I had was that this was probably the final letter, the one that would evoke a response. I found a copy of the letter years later, tucked away in the bottom drawer of my dressing table. The words on the paper made me catch my breath. They told my natural father that he had every right to reject the contact, but that ‘naturally Janet would be terribly upset’. These words explained the meeting that took place two months later, when I was twenty-two and a half, just as the dream had predicted. The meeting had been set for eleven o’clock one morning at the hotel he was staying at. I had arrived at half past ten, the time that his plane was due to land in Perth. The hotel was only fifteen minutes from the airport. For nearly three hours I sat on a couch in the large hotel foyer and scanned

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every figure that entered through the sliding glass doors. On that particular morning, there had been a constant stream of men wearing business suits and carrying briefcases. But I had not seen one with a pink carnation in his buttonhole. My nervousness and excitement had kept my mind focused and alert for so long, waiting . . . watching . . . wondering. Fatigue finally overcame me, gently closing my strained eyelids. The voice was distant when first I heard it, hovering just out of reach of my semi-conscious mind. Then it moved closer, becoming clearer and sharper. And another sound had joined it, the sound of water ... running ... splashing. The two sounds suddenly gathered speed, exploding like a thunderclap in my head. I sat up quickly, muscles tensed, eyes blinking furiously to clear my foggy mind. How could I have allowed myself to fall asleep? The tall foaming fountain in the centre of the foyer came into focus before I became aware of his presence. He stood alongside my chair, a small posy of pink and yellow flowers wrapped in white tissue paper clasped in one hand. He wore no pink carnation, as he had promised, but his greeting was warm and friendly: ‘Hi! How are you? Bet you thought I wasn’t coming. How about we have a coffee up in my room?’ Kissing me on the cheek, he handed me the delicate flowers. I cradled them in my arms, my cheeks flushing, my heart skipping with happiness. Everything changed when we were in his room though, the words hanging in the air like heavy grey storm clouds: ‘I don’t think I am who you think.’ Shock, numbness, disbelief. My hand froze midway

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between the table and my lips, my fingers no longer sensing the cool, smooth texture of the glass I was holding. Everything stopped. ‘I don’t understand ... Which bit doesn’t fit?’ I recognised the voice as mine, but felt no connection with it. I placed the glass on the table, its contents untouched, my thirst forgotten. Confusion descended like a thick fog. Briefly I imagined myself leaping out of the chair, picking it up and hurling it through the large plate glass window behind me. The thought of following the chair to the ground eight storeys below came naturally, almost too easily. I wanted to die. But maybe I wouldn’t be killed. Maybe we weren’t up high enough. The fog thickened, then cleared. There was no shattered glass. He appeared uncomfortable, his blue eyes fixed on his clasped hands on the glass-topped table. I stared at him in sickened silence, searching for the thing that had so radically changed him. Despite our infrequent contact through letters and the mediator up until now, I had never detected any ambivalence. In fact he had always been very friendly, encouraging me to write and even to phone reverse charges. He seemed keen to get to know me, I had been eager to impress. It had been like a fairytale. But I hadn’t seen the words of poison in the letters he’d received from the mediator, the words that had spoken of bitterness and rage that were not my own. Now I felt very exposed and vulnerable. I had trusted him, revealed myself to him. There had been no question of our biological connection up until this point. It felt as though I had been paraded on a high catwalk, only to be discarded by

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the judge at the end of my performance. ‘You’re not good enough ... you’re not good enough.’ A mocking wave crashed down on me. ‘Maybe we could have tests,’ he said. ‘You see, I just can’t remember the woman who was your mother.’ He shifted nervously in his chair, his eyes never leaving his hands. I nodded tentatively. A part of me wanted to fight for my integrity, to regain my dignity. But another part wished I had never started the search for my natural father. There were no winners in this game. The telephone rang. He picked it up on the second ring, eager to escape the tension. My body came to life. Quietly I rose from my seat. He didn’t see me reach the door. The flowers lay on the table, their petals already beginning to wilt. Well, the last bit is the way I would have liked the meeting to end. But the door wasn’t in sight and I couldn’t remember how to find it. And so I stayed in my seat, fighting hard to stop the tears and maintain my composure. Being accepted was far more important to me than I realised, and for reasons I did not yet understand. It was then that my social work training, which I’d started only the year before, came to the rescue. Mentally I felt as though I had put my social work hat on, acting as the professional mediator, negotiator, trying to understand all points of view. Stopping that hat from toppling off became the challenge when, finally, the session was over and I was escorted to a taxi. On the way down to the hotel foyer my natural father sensed my impending tears and apologised, saying that he had hurt me. I heard myself respond in a choked voice that I had

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hurt him. I hated the thought of causing anyone unnecessary stress, and I was no longer sure about the truth of my identity. Collapsing into the back seat of the taxi, I kept my head down as the tears began to spill out. The tears didn’t stop for hours, maybe days. For some time I couldn’t remember what had been said during that halfhour, hour, or however long it had been. It was all a big blank. My dad was clearly distressed by my experience and spent some time alone in his room. But his support was just as strong as Mum’s, and without the two of them, I could not have coped with what had happened. Ahead of me now lay the biggest challenge of my life. My confusion soon turned to defiance. I was being asked to prove who I was, to prove my innocence. The fighter inside me wanted to do this, to clear my name. But there was another part of me that wanted to let go and to treat with contempt the mere insinuation of there needing to be proof. To me, proof of innocence implied the presence of guilt. I was not guilty of any crime and would not collaborate with determining otherwise. And what were the consequences of going ahead with testing to prove our relationship? How could a friendly relationship breed out of such doubt? It was time for an objective reality test and whenever I needed this I went to Mum. Mum always gave me a balanced view of things, if sometimes overcautious. But there was no caution this time. The strength of her conviction that I should go ahead with the tests to prove who I was amazed me at first. But when she supported her beliefs with the words, ‘because we know you’re his daughter’, I understood. My parents had

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been hurt just as much as I had been by my natural father’s sudden cold feet and his apparent inability to recognise his own kind. If only I’d been properly prepared for this reunion, if I’d had counselling, my natural father’s reaction would not have surprised me. I would have been able to understand his shock at discovering a daughter he never knew about, and would have been able to give him the time to get used to it all. But I was being influenced by the mediator, whose own adoption reunion had turned out badly and who believed counselling meant pursuing adoptees’ rights at all costs. There was only one way to determine the biological link. Because my blood group was the most common, blood group testing would prove nothing more than the possibility of a genetic relationship that I might have had with x million other people as well. The test had to be accurate, had to prove without a doubt that he was my natural father. DNA fingerprinting had just been developed and was available in Australia. Back then, only blood could be used for testing, not hair or skin cells. Always keen to be the investigator and find out all the facts, I took it upon myself to do the research on DNA testing. I found out that having a sample from both the mother and the father was more desirable, but that one parent was enough. This brought me to a dilemma. Should I contact my natural mother, who wanted nothing to do with me and who was so frightened of anyone finding out about me, to ask her for a sample of her blood? I decided against this when a comment she’d made at our meeting flashed back in my mind. At the

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thought of revealing her secret, she’d become almost theatrical, spluttering in agitation that breaking her silence would result in people pointing at her as she walked down the street. And even though her secret would only be revealed to her doctor, who would authorise the blood sample, the Hippocratic oath would not be sufficient to calm her paranoia. So one blood sample would have to do. The test could only be done in the eastern states. My blood would have to be flown over by courier after being treated with special enzymes. Then it would take about six weeks to run the various tests to ascertain the final verdict. This time I didn’t wait the mandatory three months to hear from him. This time, one month after our meeting, I picked up the phone and nervously dialled his number. The words tumbled over each other in my excitement as I revealed my discovery about DNA testing and outlined the arrangements we had to make. He sounded annoyed at my eagerness, and I remembered that he’d said he would do the research. Two months of silence went by and I found myself in an ever deepening hole of depression. My parents tried to distract me by taking me on a holiday down to the beautiful countryside of the South-West. It was winter, everything was lush and green and the air was crisp. But all I could feel was the silence, a silence that devoured me, tearing at my flesh and ripping apart my bones. One morning I found myself wandering alone along a bush track with no thoughts in my head, no idea of the time. I became aware of a car slowly approaching from behind and I was surprised to see that it was my parents. They had come looking for me, worried because I

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had been gone for some time. I could not explain my feelings, could not put into words the pain that consumed me. My parents were away when the call came. In stunned silence I listened as my natural father issued instructions about where and when to send my blood sample. My head went into panic mode which resulted in me making two trips to the doctor on the day of my appointment, rather than just the one to give my blood. I wanted everything to go well and, for some reason, doing one thing at a time seemed more likely to guard against mistakes being made. So I delivered the little esky and freezer brick that would ensure the safe cartage of my blood well before the appointment time. I had also arranged for the courier to pick up the precious package from the surgery at a certain time. Five minutes after that time had passed, I rang the surgery, anxious to know that nothing had gone amiss. It hadn’t. The courier company had fulfilled its part of this bizarre exercise and I was left to worry about whether the blood would reach its destination during office hours, or would be deposited on the laboratory’s darkened doorstep, remaining there for hours while the freezer brick melted. If the blood heated up, its composition might be changed, affecting the results. The waiting was not quite so difficult to tolerate this time because it had a purpose, and I knew there would be an answer at the end of it. I had a headache and had taken myself off to bed the day the answer came through. As I held the telephone receiver to my ear, the haziness in my head seemed to blur the words as they reached my brain: ‘. . . was a conservative result because we only had my blood sample to go

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on,’ I heard my natural father saying,‘but they’re 99.96 per cent certain we’re related.’ For some reason I couldn’t grasp the meaning of those words. Thinking that more proof was needed, I heard myself asking: ‘So you’re not happy with that?’ ‘Oh, no. That will probably do.’ Either my headache, or the strain I’d been under over the past months of waiting to discover my identity stopped me from appreciating my natural father’s sense of humour. It took some time before I could comprehend the impact of his news. We were related. There was no doubt. Now I knew who I was. The relationship lasted for only eighteen months. But it was I who cut the contact, not my natural father. I had dived into the search and reunion with my natural father without any sort of preparation, without understanding how different this relationship would be from any other. The feelings that surfaced were unmanageable and confusing. I could not deal with them, and I could not deal with any minor problems that arose. My natural father made an amazing effort to accept me, despite the fact that he had never known about me. Suddenly, he had an adult daughter turn up in his life, someone who was a stranger and yet wasn’t. He invited me over to stay with him in Sydney, to meet his wife and family. I was made to feel very welcome and also met other family members. Six months after that visit, I was passing through Sydney on my way to Queensland to visit my brother John, after finishing my social work practicum in Victoria. My original plan had been to spend time with my natural father

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and his family after the Queensland leg, but things changed and I ended up in Sydney first. My lack of maturity at the time made me oblivious to the social customs concerning visiting and so I assumed that I would return on my way back from Queensland. I was in holiday mode, on a high from my time in Victoria, and didn’t want the elation to end. So I misinterpreted the tactful suggestion that this second part of the trip be cancelled. The first time I had left Sydney, six months ago, exhilaration had flown with me. This time when I took off for Queensland, I was consumed by the heaviness of confusion. I had not been able to appreciate my natural father’s need for more time to come to terms with his new-found situation. I decided that the ambivalence I had seen in him at the beginning was a definite sign that he could not accept this stranger into his life, and that this was irreversible. I took it as rejection, and so ran for cover. I experienced deep pain and sadness that I didn’t want to acknowledge. It was better, I thought, to pretend that I didn’t feel anything, to just get on with my life and forget what had happened. And so I retreated without any explanation. Six days before my twenty-sixth birthday, just over a year after cutting contact with my natural father, I found myself without any father. My adoptive father died suddenly and unexpectedly of a heart attack. He was only sixty-four, and at an age when he was enjoying semiretirement and his grandchildren. We had become much closer than we’d ever been over those last twelve months. Now, my hopes and dreams for a real father/daughter relationship were gone. Dad and I had been great friends when I was young. I

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was keen to learn from him; he was eager to teach. He also loved to spoil me. Special trips into town on a Saturday morning will never be forgotten. Just Dad and me, and freedom at the Pick-N-Mix chocolate counter. When his work as head of display with the Western Australian Museum took him interstate or overseas to visit other museums, I would await the postcards sent specifically to me. Postcard from Africa, 17 September 1973: I didn’t really see any elephants when I went to Krugersdorp Park today. But I saw lions, zebras, ostriches, springbok, antelope, eylandt and other animals. A young baboon jumped right through the window of the Volkswagon bus we were in and scared all the ladies. Later two baboons jumped up on the roof and hitched a ride for half a mile back to his friends. Love Dad xxxxx Postcard from London, 21 September 1973: How’s my girl? I miss you all very much. London is getting a lot of rain and I am getting wet feet. I wish you could have a ride on a big red double-decker London bus. Love Dad xxxxx Postcard from Amsterdam, 5 November 1973: This morning I moved into another hotel — the de Haas — in the same street. It was awful having to

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move all my things without Mum to organise me. Yesterday I went to Harlem and Utrecht with cousin Terry from England and her friend. We had nice sunny weather. Love Dad xxxxx Postcard from Toronto, 25 March 1978: I bought this card up the CN Tower. I wish you could have ridden up in the external elevator with me — I was terrified and needed you to hold my hand! How’s the horse riding? Don’t forget to feed Daisy and Daffodil and Petals [guinea-pigs]. Give Sue and Mum a kiss from me and keep one for yourself. Love Dad xxxxx His concern for me was ever present. His eyes, his furrowed brow and his hugs conveyed so much. His fear of the unknown kept him away from the hospital during my many visits there. ‘I was so sure that you were going to die when you were a baby that I picked out a spot for you at Karrakatta. I said to myself, we’ll find the best place for you, Jannie.’ This always brought a lump to my throat. Adolescence arrived and the wind changed. Arguments held us apart, building a wall between us which stopped us from seeing our own reflections. He’d take one point of view and I’d automatically take the other, even if it wasn’t my belief. His mind seemed closed to me, and so I closed mine to him. I thought that he hated me, that we hated each other. Because of

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the wall, I couldn’t see Dad’s own father standing behind him, criticising, brandishing a red pen. I learned later that in his early adult life, all Dad’s letters to his father had been returned with corrections made to his grammar and word choice. He could never do right in his father’s eyes, and this had affected the way he saw himself. His low self-esteem, something that I shared, made him both a perfectionist and rigid in his views, which was the source of many quarrels. Dad’s protectiveness and compassion gave me the fire I needed to seek out and overcome challenges as I shed my teenage years. Such a special gift, yet taken for granted. Challenges for me then were simple things such as negotiating my way through town after work to catch a bus home. He’d meet me at the bus stop after finishing work himself and we’d travel home together. My struggle for independence made me rebel against such a caring gesture. If only I’d ... My journey of self-discovery began too late for the two of us. The wall had been crumbling for some years, but had only truly disintegrated in his last year. In that time, we became close. He showed his love with flowers. I showed mine with respect. He shared his troubles with me, but never let on about the past, the problems he’d had with his own father, which constantly shadowed him. If only he’d ... ‘I’m not long for this world.’ He always said this, but we just laughed. Dad came from a family of long-livers. He said this in his last week, and added, ‘Don’t let your mother let the house fall down around her ears when I’m gone.’ I did not pick up on the clue. I wish I’d ... I see him sitting in a chair in my study. He looks really

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well and happy. I walk around the room showing him things, a lump in my throat, my eyes brimming with tears. He studies the framed photograph of a beautiful beach scene in New Zealand, his homeland. I try to tell him that his ashes lie there, but the words won’t come. He is excited by the photograph and asks for a copy. How much time have I been given to say those precious words? Not enough. The darkness of my bedroom replaces the dream, leaving me with my tears. The chair in our lounge room, Dad’s chair, is empty. No newspaper rustles as the pages are flipped over. No spectacles are whipped off to catch a story on the evening television news. The light next to the chair is on, but only darkness fills this corner of the room. ‘Now you’ll never know how much I loved you.’ But a death notice is too late. I stare at his chair, willing him to return. The suddenness of his death can never be reconciled within me. But some of the comfort and security he gave me can be found in that chair. As I sit in his place, arms seem to envelop me and my sadness goes. We are together again.

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KEEPING AHEAD OF THE SHADOW

* ‘What don’t you like about your face?’ Wham! Without any warning, he had reached inside me, pulled out my inner core, and exposed it and all its dark secrets before I’d had time to try and hide them. Instantly the tears were there, threatening to explode down my reddening cheeks. I turned away from the plastic surgeon, covering my face with my hands. I had been so composed before, so sure of what I was doing and what I wanted. And then he had asked me that question! The question that had such an obvious answer. The question that seemed so cruel. ‘You just want to make me cry, don’t you?’ I barely managed to say from behind my hands. He didn’t say anything, just continued to sit there looking at me. ‘Well, isn’t it obvious?’ I demanded, feeling so ashamed,

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so small and so exposed. Why on earth had I gone there to be humiliated like that? Why was he teasing me? Again he said nothing. I took a few deep breaths and tried to stop the painful tears and the shaking that had started in my legs. ‘Everything is wrong with my face. I didn’t ask to look like this. The radiotherapy made me this way. This is how I should have looked, before ...’ I couldn’t tell him about the walls I put up between myself and men. I pulled out a photo from my handbag. Lying on its tummy on a path beside a fish pond was a smiling baby. The baby’s face had no indentations at her temples and no sunken eyes and cheekbones. It was a beautiful face with perfectly shaped bones and beautiful blue eyes which had yet to reveal the cancer that hid there. I craved that image. I ached for that lost child. It had taken me a long time to pluck up the courage to talk to my mother about the possibility of plastic surgery, let alone to visit a plastic surgeon. My dad had died by then, but Mum was quick to tell me that they had both wondered why I hadn’t broached it with them while I was growing up. Probably the teasing I had endured in my teenage years had brought the possibility to their minds. I was now in my late twenties and the strong feelings of shame that I had carried for so many years had lessened just enough for me to be able to talk to someone I could trust. The image of that baby in the photo, looking so perfect, always floated tauntingly out of my reach. It didn’t seem fair

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that I had been robbed of those looks. They had been, and they still should have been, mine. But the radiotherapy had taken all that away from me. One of the problems of giving babies radiotherapy is the effect it has on bone growth in the area where the rays are directed. It causes the ‘retinoblastoma look’ of sunken cheekbones, eyes and temples. The look was one I hated so much that I had always refused doctors’ requests for a photo of me for the files to show the typical characteristics of a retinoblastoma patient. I still had an aversion to mirrors. If I did chance a peek, the result was always the same: a strong feeling of despair. The image I held of myself was so different to the one that stared back at me. If I wasn’t constantly reminded of the ‘retinoblastoma look’, I felt beautiful, alive confident and able. But when retinoblastoma looked back at me, I felt shame, a shame so powerful that it made me think twice about going out and meeting new people. It made me doubt everything positive that I felt about myself. How could someone like me have friends? Who would want to know me? How could I be seen as competent and able to do anything? How could I keep selling myself from the inside when all they could see was the outside? Thoughtless questions from some people really shattered me. ‘Did you suffer an injury to your head?’ ‘What happened to your head?’ These questions immediately evoked the flight response in me. Lowering my gaze to my feet, I would mutter something and move away. It was a thousand times worse if anyone else was within earshot. Then I lost everything I ever believed about myself. I shrank away to nothingness,

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dragging myself along the pavement with head down and cheeks burning, the tears just out of sight. The shame that followed me like a constant ghost made it hard for me to foster friendships and totally ruled out relationships with men. Whenever I met someone new, usually a woman around my age or a bit older, who tried to strike up a friendship, I found the old doubts creeping in. What could she possibly like about me? Why does she want to be my friend? What have I got to offer? These doubts stopped my spontaneity and had me dreading phone calls where I would have to think of an excuse as to why I couldn’t go out to a movie or a meal or coffee. I wanted to stay in my own safe little world and not to face the rejection that I believed would inevitably come. In the past, when I’d had the nerve to respond to someone’s friendship, making the suggestion that we go out, I’d been met with hurried excuses, and promises that never eventuated. This hadn’t happened often, but it was enough to provide me with strong evidence for my case. And relationships with the opposite sex? That was far too scary for me. To start with, the only way to meet a man was through eye contact, and that was something I couldn’t use because I couldn’t see well enough. And then there was the way my eyes looked. Who would want to look into my eyes? What a choice: one was artificial and didn’t move; the other was bloodshot most of the time because it was so dry, as well as being slightly turned towards my nose in an effort to see everything around me. But that wasn’t all. I just couldn’t feel confident enough to hold a man’s gaze. I had taken up ballroom dancing once in an effort to meet someone special,

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but I had abandoned it quickly. It wasn’t the close body contact that troubled me, it was the closeness of our faces. I spent the whole time looking down at my feet, pretending I needed to look at them to get the steps right. I didn’t dare chance a look at my partner’s face because I knew what I would see: his face turning away. I was so embarrassed and ashamed that despite my love of dancing I just couldn’t go back. The men I had attracted and been attracted to were always arrogant, with huge egos. I was good for them, because I had such low self-esteem and was a master at heightening their egos. It always took me a little while to see through these men, but eventually I did and so the budding relationship ended. Being able to talk to my mother about the possibility of having plastic surgery and getting her full support and understanding helped me to take the necessary steps. Hope had given a slight nudge to my shame, allowing me to both make the appointment and ultimately to survive the first consultation. When I fell apart in the surgeon’s office, he didn’t respond by taking my hand, patting me on the head or trying to console me. And I was glad he didn’t: the slightest touch of a hand or pitying remark would have crushed me and sent me scrambling out of the office. Instead he talked about possible surgical options and outcomes. He needed to speak with another expert to advise on the best way to get what I wanted and, of course, the surgeons had to take into account the fact that my facial bones had been irradiated, which could cause some problems. In essence, he expected it would take two eight-hour operations with a period of six weeks between

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them for recovery. The bill would be high and naturally I would need time off work. The surgeon had been honest about whether he could recover my former appearance. The bottom line was that it would not be possible because of the damage the radiotherapy had done to my eyes and eye sockets. Their shapes had been changed and this was something he could not alter. But he thought he could make a difference by padding out my temples and doing some work on my facial bones. I left his office feeling lighter and more hopeful. Maybe something could be done. Even if I could not retrieve the facial features that were promised in the baby photo, maybe the results would be close enough? At least it would have to be better than this. Please God, let it be! The shame I felt about my appearance and what I was contemplating stopped me from telling anyone of my visit to the plastic surgeon. Mum knew that I didn’t want anyone in the family to know, so she kept quiet. But a chance meeting with a nurse I’d worked with at the nursing home helped me to slightly open the door of that dark place. Elizabeth had a chronic lung condition caused by years of smoking. Her emphysema was so bad that her lung function was virtually zero, and so she’d had to leave work. I bumped into her one day at the nursing home when she dropped in to see some of her old colleagues. Despite her condition, she was bright and cheerful and pleased to see me. She told me she was off to Melbourne with her family to await a lung transplant. It had taken her months of counselling to come to this decision, as it was always a risky procedure to undergo. She told me of

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the brilliant social worker in the transplant unit who had helped her work through the issues and reach her final decision. Elizabeth wasn’t scared: she knew it was the right thing to do and she was ready. The alternative for her was life in a wheelchair with an oxygen tank. She snorted at this, dismissing the idea as unthinkable. And I could understand that: her personality was so strong, it was obvious she wanted always to be on her own two feet. Elizabeth’s courage touched me deeply. Her openness with me made me feel safe enough to tell her about my plastic surgery plans. She didn’t shy away from the subject or make me feel uncomfortable at all. Instead she supported my decision and so my hope for a positive change increased. I felt certain that if Elizabeth could go through a lung transplant, then I could endure the complex operations and pain that lay ahead. The follow-up phone call from the plastic surgeon came soon after I’d seen Elizabeth, and it was shocking. It wasn’t the detail of the procedures I would undergo that horrified me, or the special nursing afterwards with the chance of ending up in intensive care, although this did start the adrenalin pumping. What really got to me were the risks attached to the surgery. There was the standard risk of getting an infection just by having the procedure. Then there were two other risks, which he told me about very calmly. The first was blindness, and the second was death. Although I knew Elizabeth’s surgery would also be highly risky and that she had chosen to take the chance, that was it for me. I didn’t want to sacrifice my eyesight, let alone

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my life, just for the sake of improving my appearance. I didn’t have to look at mirrors. I didn’t get to tell Elizabeth of my change of mind. When I said goodbye to her, I was not to know that I would very shortly be attending her memorial service. She got the call for her lung transplant and went to Melbourne. But she died in hospital shortly after the surgery.

* Feelings can be buried, but they can’t be kept hidden and under control forever. I found this out at twenty-nine, when I met an incredible Japanese woman on a three-day horseriding adventure in January 1996 in the Shannon Valley in our state’s South-West. It was a real bush adventure with the typical bush toilet, showers in a bucket, sleeping under the stars and cooking over a camp fire. It had taken some courage for me to go on the trek. How would I get on with the group by myself? Could I cope without asking for too much help? Would I feel isolated and lonely? But after much encouragement from one of the group leaders, I had signed up. I hadn’t been on a horse for years, and this was a sudden re-introduction to aching knees, and back and leg muscles that hadn’t been used for some time. At the end of the first fivehour ride, I had to be carried off my horse. That night I had great difficulty lowering myself onto my sleeping bag, and getting up again when I’d forgotten something. The second long ride wasn’t much better and again I had to be carried off

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the horse. The third and final ride I chose to miss, opting to lie on my stomach under a gum tree and sleep. It was after the second ride while I was once again trying to ease the pain in my knees that the woman approached me. At the start of the adventure the group leaders had spoken of how horse riding often triggered the release of emotions. I had never heard of this before and dismissed it. Now the woman spoke softly to me about where emotions were stored in the body and how they could be released just by placing a hand over that area. She had a lovely soothing and gentle voice, and I felt great respect for her, but I did not believe what she was saying. Gently, she moved her hand to my belly to show me the spot. As though she had pulled a plug, a sudden sadness so overwhelming burst from me that I found myself overcome by wracking sobs. I could not stop the torrent and could not understand why I was crying. There had been nothing to upset me on the trip; I was getting on well with the group and was enjoying myself as much as the physical pain would allow. I had slipped into the primitive way of life much more easily than I’d thought I could, loving the feeling of being part of the forest all around us. But this woman had shown me something, and maybe it was time I started to listen.

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CHAPTER 10

IN THE BLOOD

* My hands shook as I reached for my coffee cup. Please, God, don’t let him notice. I tried in vain yet again to quash the

nervousness that had surfaced without warning only half an hour before his arrival. I thought of the weeks and weeks of preparation for this meeting, the confidence and selfassuredness that I’d achieved. Now my nerves were so bad that it took both hands to lift my coffee cup so that the brown liquid wouldn’t spill onto the blue batik tablecloth. My natural father pushed the plate of cakes closer to me, encouragingly. Over the phone he’d offered to bring the morning tea if I provided the coffee. I hadn’t expected a whole box of delicious cakes. Only half had fitted on to the plate that now lay inches from me; the rest were still in the box in the kitchen. At any other time I could have wolfed down several of the tempting morsels. But now my mouth was dry, my throat tight. Gingerly I picked up the nearest cake and dropped it on to my plate.

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Memories of our first reunion nine years ago haunted my mind. What would happen this time? Would this second meeting be different from the first? It had been seven years since we’d last seen each other and I was now thirty-one years old, not the silly twenty-four year old that I’d been back then. I didn’t know what my natural father was thinking or feeling, what had brought him to initiate this meeting. An old familiar voice, one I thought I had shaken, echoed in my head: you’re setting yourself up for rejection . . . why are you doing this?

‘Tell me about your work. What does a social worker actually do?’ I found myself talking easily about my work in the nursing home, my concern for the elderly and young people with disabilities. It was easy to talk about the injustices I saw, and the strong need I felt to stand up for others’ rights, and to try to right wrongs. My natural father listened intently as I described situations that compelled me to act. His response surprised me. ‘It must be in the blood. Social justice is very strong in our family.’ The old familiar voice in my head was instantly silenced. Those words, ‘in the blood’, so simple yet so full of meaning, floated around me as he talked about the family connection. A part of my life that I knew so well, yet whose origins I knew nothing about, suddenly slotted into place. As we talked, and I heard the acceptance in his voice, sadness and guilt began to descend. I thought of the lost years, the seven long years of my silence. For three of those he had been living close by. Now, he was moving away, to another

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state. I wanted to tell him why I had cut contact, why I had run away. The opportunity came. Without any fear, I told him how lost and confused I had been when we’d first met, how unprepared I had been. When my confession was over, my natural father told me some things I hadn’t known; the unprofessional way he had been contacted and had learned of my existence; the shock that had followed; and how delicate situations like these should be handled. There were no barriers, nothing was hidden or held back. Complete safety and trust enveloped us as our feelings were released. When the meeting was over I could feel the sadness again. But the door had been opened and the light that spilled through was warm and welcoming. I knew the journey ahead would be hard at times, but the door would never be closed. For seven years I had tried to push down the feelings I had for my natural father and what had happened during the brief time we’d had together. I tried to convince myself that I was not interested in my past, that I didn’t need to know who I was, didn’t need to belong. But the feelings were intense and confused; they wouldn’t stay hidden away and I had no control over them when they reached the surface. The times when I lost control were usually on special dates, like Christmas and birthdays. I loathed these occasions. How could I feel so sad, so lonely and so confused when I should be happy? Christmas was probably the worst time. Each Christmas I would wait for his card to arrive. My natural father hadn’t given up on me, despite it being obvious that I had distanced myself from him. Each Christmas he sent me a card

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with all his news in it. My confused feelings had me both longing for the arrival of the card, and yet feeling angry when it did come. I wanted him to reject me by not sending a card, and yet I didn’t want to be rejected. But somehow the card symbolised rejection and abandonment for me. I was determined to feel abandoned, to feel not wanted, and so nothing my natural father did was right. When the cards stopped coming after about three years because I had not responded to them, my feelings intensified until I could not handle them anymore. They were getting in the way of my life, making it impossible for me to see myself as the person I was. I fought the urge to seek counselling for some time. I had had a bad experience just after my father died. The sadness I felt over losing him sent me looking for some grief counselling. But the counsellor I chose had another agenda, and I found myself examining every dark thought that loitered in the deepest corners of my mind. I had been made to feel worthless and weak. No support was given when the tears flowed, and none of my positive aspects were brought out. Each session ended on the dot, and no time was given for me to recover my composure before leaving the room. I was told that I needed intensive therapy for at least two to three years to build up my rocky foundations. When I became really depressed and wanted to terminate the therapy sessions, the counsellor spent the next few sessions trying to convince me that I had sought her out for a reason, and that I didn’t want to leave. I finally stopped going, but the trauma of the time spent with her stayed with me. I didn’t realise until much later that the style of counselling I had been given was very different

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from the standard models of counselling I’d encountered, and was very alienating. My adoption issues had not been picked up on. Christmas of 1997 had passed with no card from my natural father. The strong feelings were surfacing more often than I wanted or could manage. It was time to get help, and this time I sought out a counsellor specialising in adoption. When I poured my heart out to the counsellor, I was surprised by her acceptance of me and her complete understanding. For the first time I was to see how adoption had affected my life, how I needed to come to terms with the losses associated with adoption before I could move on. It was staggering for me that I had missed such a simple concept, that my feelings were a perfectly natural grief response to the losses I had experienced. I knew full well as a professional social worker that denying feelings of grief over a loss or death is not healthy. But I had never thought that I had incurred a loss by being adopted, because it had always been such a special thing to be adopted, to be chosen from a ward of babies by people who wanted you. In thinking like this I had totally missed seeing the obvious: that I had been given up, rejected, abandoned, for whatever reason. Society had presented a strong message that I should feel privileged, that I was lucky to have been adopted and to have such special parents, and yet the reality of having been separated from my natural family and what that meant had been covered up. The road I travelled over the next few weeks was the toughest I had ever been on in my life. There was no holding back on the feelings now, and the years of holding back had

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only made them stronger. I knew I had to experience the feelings before they could fade, but at times I thought I wouldn’t be able to keep going. The emotional pain was so great that it would have been easier to pull out, to run away from the truth. At work I walked around feeling like a zombie, not speaking to anyone unless they spoke to me. The flatness I felt was something I had never experienced before. I had lost interest in everything. My clients’ problems no longer mattered: I had to force myself to concentrate and act appropriately when listening to someone’s problems. It was lucky for me that work was quiet during those harrowing weeks, and I could often shut my door and let the tears fall without interruption. The support from the counsellor was always there and when I was at my lowest I often contacted her by phone between sessions. This time I wasn’t left with the feeling that everything was wrong with me; this counsellor kept emphasising my strengths, balancing out the negative side of adoption with the positive side. Somewhere in those dark days I had a dream. It was a powerful and very vivid dream that I knew was much more than just a dream. I was standing on a grassy quadrangle, surrounded on all sides by a double-storeyed shopping centre. There was a thick mist, and I could see only a couple of feet in front of me, yet I knew other people were there. My brother Mark was with me, and out of the blue asked me to point out my mother. I was annoyed, because I knew he meant my natural mother and of course she wouldn’t be there. I snapped at him, telling him I would show him a photograph of her later. Suddenly I heard a familiar voice. It said, ‘I’ll show you

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a photo of your father.’ My natural father stepped forward out of the mist, presenting himself as the photograph. His arms came around me in a warm hug. As I returned the hug, I just caught myself before the old me tried to hide my feelings and make light of it. Instead, I let the tears flow and I sobbed and sobbed and sobbed. I felt safe and accepted. I felt trust. I clung to this dream for the rest of my counselling sessions. It gave me hope and courage. It gave me some direction. As time went by I began to see how my adoption issues had affected the way I saw myself and how I related to others. My feelings of having been abandoned had played a powerful role in how I behaved. It meant that I had been too scared to show my feelings, too scared to show my anger or hurt with my friends in case I lost them. I thought back to my days at high school where I had never spoken up for myself, even when my friends really hurt me. Abandonment was so familiar to me that I searched it out. I looked for it everywhere, just to prove that I wasn’t wanted. I misread and misinterpreted people’s comments and behaviour, grabbing hold of any slight indication that they weren’t interested in me. I sabotaged relationships in my desperate search for signs that I wasn’t wanted. And these signs were absolute proof of what I already knew, that I was no good. I had rejected myself. And this is what I had done with my natural father. His difficulty in accepting the fact that he had an adult daughter that he had never known about, and his struggle with all the feelings this generated, I saw as indisputable proof of my theory. I failed to see what a shock it must have been to him to

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find out about me, to meet me and adjust to the change this brought into his life. The counsellor helped me to see that I had had plenty of time to think about meeting my natural father, whereas he had been given none. He needed at least as much time as me to adjust to the realities of the situation. This had only been about four years for me, but I realised that even then I had not been ready. It was made clear to me that I needed to resolve my adoption issues before making any decisions about what I wanted to do. Did I want to recontact my natural father or not? What about my natural mother? Had I thought about trying again with her? There was no influence from the counsellor about which way to go or when I should decide. When the terrible feelings of sadness, flatness, vulnerability and despair began to lessen, I knew what I wanted to do. I wanted to contact my natural father again. I needed to know how he felt about me, and whether he wanted to have contact with me. I needed to know if things had changed over the past seven years, whether my feelings had been right at the time about his ambivalence, and whether he still felt that way. I wanted the chance to get to know him, and for him to get to know me. I had no idea how he would react to me turning up in his life again, but I needed to find out where we both stood before I could get on with my life. The counselling had given me a strength I had never felt before, a feeling of completeness. I knew that I could now handle anything that happened in the process of recontacting my natural father as I no longer had unrealistic expectations of him. I chose to use the counsellor as a mediator when

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contacting my natural father again. It was a risk, I knew, because of the bad experience we’d both had with the mediator who had contacted him in the beginning. At that stage I had no idea just how bad it had been for him and what had actually happened: I only had a copy of a letter that told me of the pressure that had been put on him to meet me. If I had known the full story, I might not have pursued this avenue again. But I felt it was fairer on both of us to use a professional third party, someone to respond to the needs of each of us, and someone to soften the blow if my natural father did not want to see me. The first letter was sent to my natural father by the mediator. I waited, counting the days . . . two, three, four. Silence. No response. And then something terrible happened. I found out that my natural father was leaving Perth, going to live in the eastern states. I was devastated. I was too late! All those years I had wasted when he was so close by. Was I being punished? Two weeks passed before the second letter was sent to the same address, this time by registered mail. I had asked for another letter to be written in case my natural father had moved, had sold his house and gone somewhere temporarily. Worry consumed me as I waited again. What if I couldn’t find him? Would we be able to start again when living on opposite sides of the country? This time I didn’t have to wait long, but the response when it came frightened me. My natural father was angry. He did not want a third party involved. He told the counsellor that he and I could sort things out by ourselves, and passed on his phone number to be given to me.

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Old feelings of fragility and hurt resurfaced at this response. I was unable to pick up the phone and make the call for fear of what would greet me. Time was running out: he would be leaving in about a month. But I needed to pull myself together before I could make the call. Two days later, I picked up the phone, gritted my teeth and dialled his number. It was my natural father who answered the phone. His voice was warm and friendly. When I told him who it was, I expected the tone to change, but it didn’t. I listened with amazement as he asked about what I was doing and where I was working. I had been practising what I really wanted to say, but found it hard to put forward: ‘When can we get together?’ But I didn’t have to ask: he asked first. As soon as I put down the phone, I knew everything would be all right. My natural father had been so interested, so friendly and so keen to meet. There was no anger, no suspicion, no ambivalence. The way he had reacted to the letter was understandable, as he revealed to me when we met at my house the following week. He had been visiting Perth almost ten years previously when the first contact by the mediator had been made. This had been by phone. The mediator had called him in a public place, knowing full well where he was, and had dropped the bombshell. He had then been given emotionally charged letters by this person. It was no wonder he reacted so strongly to the counsellor this time. He had reason to believe that the same thing could happen again. My natural father went out of his way to see me again before he left Perth. The second time was much easier than the first. I felt very relaxed and confident. We talked about a lot of

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things, and I was amazed again to see the similarities between us. I had his laugh and his sense of humour. He was very articulate and intelligent, which I had always known, and I hoped that I had inherited these qualities. He assured me that I had the gift of the gab. Our thinking was along the same lines, and at times we both spoke the same thought at exactly the same time. It wasn’t unnerving; it was exciting. I was finally seeing where I had come from, finally putting the pieces together. I noticed again something that I had been vaguely aware of when we’d first met all those years ago. It was the feeling of a bond between us. Back then the feeling had been fleeting, but it had definitely been there. I felt it that first time as I fell into step with him as we walked through the hotel foyer on the way to his room. And now there was something else. I felt myself click into a different space, a natural way of being when I was with him. I could not be sure, but I felt that my mannerisms were the same as his. I thought back to my childhood and the interest I’d had in my natural father without knowing why. It could not have been coincidence. But once again our time was up very quickly. He had to go as there were so many things to do before he left Perth the next day. I fell silent. How did I say goodbye when I didn’t want this moment to end? And what would happen in the future? Would we see each other again? My natural father understood. He took my hands in his. No tears came, but something strange happened. I entered a misty, warm place, one that I had never encountered before. I could not hear or see. I only felt comfort and safety.

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For the first few weeks after my natural father’s departure, the strength I had gained from my counselling made keeping in touch easy. I had no hesitation in ringing or emailing. Life was wonderful and I felt so confident. I even found the courage to leave my job at the nursing home, where I had sat in comfort for six years, to take up work as a non-legal advocate with the Office of the Public Advocate. In this job, I could continue my bent for social justice by protecting the wellbeing and rights of people with decision-making disabilities by working alongside the Guardianship and Administration Board which made rulings on financial and lifestyle matters, based on the advocate’s investigations and recommendations. But my counsellor had warned me that the old familiar feelings would come back, and that they might even be stronger. The difference, though, would be that I would recognise them and know what to do to beat them. And she was right. It wasn’t long before I began to feel not good enough, to expect more than I was getting and to slide back into my silence. If I didn’t hear from my natural father, I would immediately think that he didn’t care. I never considered for long enough what might be going on in his life and, more importantly, that men are not as good at communicating as women are. And so if he didn’t write, then neither did I, and I was defiant in my standpoint. There were two things that saved me from slipping right away and losing everything I’d gained. The first was my natural father’s ability to deal with problems and not to run from them. When he did get in touch by email, I was so ropable

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about his lengthy silence that I sent back a pretty caustic reply. Anyone else might have chosen not to keep in touch with someone like this, but he didn’t. Instead, he wrote a long reply explaining his reasons for not writing and apologising. I felt bad. How could I have been so immature? And so I went back to the second thing that saved me: my counsellor. Keeping on track isn’t easy because there are so many complications in these types of relationships. I was to find myself getting ‘topped up’ by the counsellor every so often, just to keep my thinking on the right track. I couldn’t do it by myself. It was the counsellor who helped me to see that I was starting to walk down the road of abandonment again, and that I was doing it because it was such a comfortable and familiar place to be in. It was the counsellor who assisted me to see my unrealistic expectations of my natural father, and to help me change my ways of thinking and to challenge my stubbornness. My friends also worked hard on me. As they were mostly social workers, they could see what I couldn’t. They could see that I was trying to sabotage the relationship. It took all of this, and a lot of hard work on my part, to keep focused on what was real and what wasn’t. I probably had my natural father wondering if I was some sort of schizophrenic, the way I chopped and changed. He let me have it, in a very mild way, when I flew to Sydney to attend a conference and, of course, to visit him. I had again started to slide back down the abandonment road, having misinterpreted an email from him about my visit. I decided that he wasn’t much interested, even though a voice inside me scolded me for

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not ringing him to talk about the visit. Instead, I had resorted to email, and it is impossible to get the real tone and meaning through the written word at times. Feeling that I may not even get to see him, I delayed phoning him about when we would catch up on a particular day. When I did phone, very nervously, I immediately felt his annoyance. ‘Gee, that was quick,’ he said on hearing my tentative greeting. I was puzzled. ‘What do you mean?’ ‘I’ve just been speaking with your mother on the phone, wondering if you got my email because I haven’t heard from you.’ I realised my error, but it didn’t spoil the visit. He met me in the pouring rain and howling wind at a jetty where a water taxi delivered me from the island where I was staying. I was having a bad day with my vision and couldn’t really see much at all, which frustrated me. Swallowing my fear of expressing this feeling, I told him of my predicament, wondering how he would handle it. I had never been brave enough before to confess to him the limitations of my vision, especially when I was having days when it was really blurry. But my natural father was not fazed at all. He took it in his stride, giving me all the guidance and help I needed without making me feel different. My nervousness gradually dissipated during the afternoon, enabling me to accept an invitation to dinner. By the time we sat down at the table, I was very relaxed. The weather hadn’t improved as the time neared for me to leave. He was worried about my return trip in the water taxi, and asked

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me to stay. But I couldn’t, because everything I needed for the care of my eye was back with my belongings. I was sad, because I had felt relaxed enough to have stayed with them. But the visit had been very worthwhile as it had cemented our relationship and made it easier for the times ahead.

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CHAPTER 11

TIME BOMB

* ‘Aren’t you lucky to be alive!’ The words were familiar, so familiar in fact that I could feel my resentment spitting like an angry marmalade cat. All I could do was smile back at the nurse and nod in agreement. It’s not that I wasn’t grateful for being alive — after all, how many babies can survive the sort of cancer I was born with? It was just that I wondered when those words would stop following me around, trailing after me like a persistent black cloud that won’t be shaken by growth and maturity. For the first time in years I was in hospital for something other than my eye condition. The surgery ahead was to discover the source of severe abdominal pains. The cause turned out to be a ruptured ovarian cyst, painful but not sinister. The only other time that I’d been on the operating table when my eye wasn’t the centre of attention was for the removal of my tonsils and adenoids. I was only five years old then, now I was twenty-nine.

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The surgical registrar appeared with my chart in his hand. After a brief examination of my abdomen, my childhood cancer took centre stage once more. ‘So you had retinoblastoma?’ he asked with a hint of excitement in his voice. ‘We had to know about that in our medical exams.’ ‘Really?’ I was genuinely interested then, for all the doctors I had encountered in the past had known nothing about this cancer. ‘Yes,’ he continued proudly. ‘If there’s anything you’d like to know about it, I can get some articles for you.’ ‘That’d be great. All I know is that it’s on chromosome thirteen.’ ‘That’s right. It’s a gene where the tumour-suppressant part is missing. It’s also linked with bone cancer.’ Tumour-suppressant ... missing ... bone cancer. The registrar left the room and my enthusiasm went with him. My head pounded with this new information. Retinoblastoma can lead to bone cancer? I’d thought the radiotherapy was the monster, the thing the doctors had been very concerned about. I remembered a conversation I’d had with a specialist at Princess Margaret Hospital’s Late Effects Clinic, a clinic set up to monitor adults who had had childhood cancers and had been treated with radiotherapy. It was there that I discovered the long-term effects of radiotherapy, that the radiotherapy which had saved my life could trigger cancer again: ‘Because of the amount of radiotherapy you had as a baby, you have a greater chance of getting cancer again. While you were a teenager and growing all the time, you had more chance of getting bone cancer. Now

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that you’re in your early twenties, bone cancer isn’t an issue. Cancer is more likely to occur in the soft tissues. I’m afraid you’re still in the high risk category.’ Because of the radiotherapy . . . Those words always brought a bitter taste to my mouth. I could never get used to them, and yet they never stopped coming. Usually these words had been linked to a problem with my eye — the cataract, retinal haemorrhages, having a dry eye — but during this conversation, the links had widened to include my whole body and the focus was specifically on cancer. Back then, the tick, tick, tick of the old bomb that had been with me as a child had resurfaced briefly before I’d silenced it with denial. And now the registrar’s words had raised the spectre of retinoblastoma, a new addition to the cancer story that had brought back the bomb and the sound of the tick, tick, tick. I buried my ear in the pillow, but I could still hear the bomb. I was keen to get out of hospital and to escape from the medical world. Surviving cancer was one thing, but discovering that I could get it again was quite another. When I first learned of the threat that radiotherapy held over me, I had been shocked and depressed. I had sensed some hesitation in the specialist’s voice when the news had been delivered, a hesitancy that seemed to be about not frightening me with such a revelation. But what I hadn’t known then was the rest of the story, part of which the registrar had exposed, about the links retinoblastoma had with bone cancer later in life. The full story would come out in time. But I had been given a tiny clue, which I’d chosen to ignore, when I’d tried to donate blood once. I was working in the staff welfare section of the State Energy Commission at the

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time. The mobile blood bank had taken over the seventh floor of the building, and all employees were encouraged to do the right thing. After a lot of persuasion from my workmates, I had swallowed the fear I had over having my blood drained out of me, and found myself on the seventh floor. The scene in front of me was enough to put me off. Two rows of volunteers lay on hospital beds, their blood greedily being sucked out of them by tubes connected to clear bags. I had taken my time filling out the necessary paperwork to delay the procedure that awaited me. Without a thought I ticked the ‘yes’ box for the first question, which asked if I had ever had cancer. No questions were asked about my cancer during the interview that followed, and I was led to a stool next to a machine that measured the amount of iron in the blood. My mouth had become really dry by then, my hands clammy as I looked around the room. The prick of the needle in my thumb had jolted my attention away from the rows of beds where I envisioned the bodies growing more ashen, moans escaping from their gaping mouths. But I hadn’t been prepared for the next jolt. A lady in a white coat came rushing over to me with a piece of paper in her hand. ‘You indicated on your form that you have had cancer, is that right?’ ‘Yes,’ I answered innocently, ‘but that was back when I was a baby.’ ‘It makes no difference. You can’t give blood. You see, there’s always a chance that there’s still a cancer cell floating around in your blood.’ Back then, the shock of such a statement was shortlived. I decided this doctor was probably wrong. Donated

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blood had to be screened very carefully so as not to pass on anything to the unsuspecting donee. They were obviously being overcautious. So instead of following the thread that had been dangled in front of me, I chose the security of denial. This thread presented itself again unexpectedly one day during a computer course where I was brought face to face with reality. It couldn’t have happened at a worse time in my life. I had just undergone intensive counselling over my adoption issues and was about to meet up with my natural father again for the second time. I had come through the worst part of the emotional journey — the feelings of fragility, vulnerability, incredible flatness and despair — and was now feeling strong, together and alive. But what I was about to stumble on so innocently would send me back into the depths of depression. The technology race was well in progress by the time I decided to catch up with the rest of the field. Some locum work I had done a couple of years earlier as a hospital social worker had made me realise that I needed to become more computer literate. Up until then, word-processing and some simple data entry had been my only contact with computers. But it was clear that social work would not escape the advancement of information technology. So I took the plunge and enrolled in some computer courses at the Association for the Blind. The Association’s computers all had speech and magnification software which made them accessible to vision impaired people. I used the speech program, listening to the synthesised voice through a set of headphones as it announced everything that I typed and read text that was on the screen.

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After completing courses in Windows 3.11 and 95, my enthusiasm and eagerness to learn led me into the world of the Internet. It didn’t take me long to understand the basic concepts and I soon reached the exercise which asked me to search for information on any topic that interested me. After viewing webpages on beagles — I owned a beagle at the time — and smiling at the cute faces that looked back at me, I decided to try something a bit harder. Without much thought I typed the word ‘retinoblastoma’ into the search box and waited. It took some time working the tab key and listening while my speech program spoke the highlighted links before I reached the list that sent a cold shiver through my body and froze my heart. In disbelief, I listened as each link shouted out the same message: ... secondary cancers . . . malignancies . . . links with . . . increased risk of cancer later in life . . .

Retinoblastoma didn’t just have links with bone cancer, it had links with all sorts of cancers. The titles of the articles I was flipping through used medical terminology, obviously written by doctors, and my training as a medical typist helped me to interpret them. I was so shocked by the amount of information on secondary cancers after retinoblastoma that I didn’t dare read any of the articles. Hearing the signal that the class was nearly over for the night, I hastily shut down the computer before my teacher could see what I had found. This knowledge wasn’t something I wanted to share. Until I became connected to the Internet at home, I had to limit my research to the times in the class when I was allowed to do my own surfing. At these times I struggled between the urge to find out more and the fear of knowing

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what potentially lay ahead of me. Each time I typed the word ‘retinoblastoma’ into the search box, I could feel myself holding my breath. The more exposure I had to the devastating information, the more depressed I became. But I was drawn in by some sort of fascination that drove me on to find out as much as I could. As I became more experienced, I uncovered more and more information that filled out a complete picture of retinoblastoma. I read articles written by doctors that were not meant to be read by patients. They spelled out the genetic aspects, the different types, the incidence, the types of treatment, and the secondary cancers linked with each type of retinoblastoma and each treatment option. My reading revealed that a lot of work was being done in America, with funding being targeted towards understanding and treating the genetic mutation that was present in retinoblastoma. Other countries were also studying the incidence and possible causes of the disease, including places such as Turkey and South Africa. Nowhere did I find mention of any Australian studies. The occurrence of retinoblastoma in America seemed very high, and I was staggered at the number of babies still being born with the condition. Although one site boasted that the success rate of beating the cancer was ninety-five percent, my browsing of email discussion groups and other sites on the net showed that children were still dying. After recovering from the initial shock of what I was discovering, I found myself on a mission. I wanted to know what type of retinoblastoma I had, as this would determine the risk of my getting secondary cancer. I wanted to know what

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types of secondaries I should look out for, and how to protect myself. What were the doctors in Australia doing to monitor their adult patients? In America, booklets had been written for adult patients on the importance of monitoring their health, and the types of cancers to look for. And I wanted to read some Australian research on the whole subject, to find out whether Australian cases of retinoblastoma were any different. I started with the genetics question. My parents had been told that I had the spontaneous kind of retinoblastoma which, according to what I was reading, resulted in a lower incidence of secondary cancers later in life. I began to wonder on what the doctors had based this conclusion, as I pieced all the information together. There were two types of retinoblastoma: the sporadic type was a spontaneous mutation of the gene that mainly resulted in only one eye being affected by the tumours; and germ-line retinoblastoma, a mutation that caused both eyes to be affected. The latter form of retinoblastoma had higher risks of future cancers. I knew that I could pass on my condition to any children I had, but I was amazed to read that there was no family history of the disorder in ninety percent of cases where both eyes had been affected. What I was reading clearly told me that I had the germline mutation. But because this meant I had a greater chance of recurrence, I wanted to know for sure. From what I could gather from my research, genetic testing was very complicated, lengthy and expensive. Some states in America offered the testing, but Canada seemed to be leading the way. The testing was aimed at discovering where the mutation in the gene was located. Rather than going through such a complicated step,

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I thought that my question could be answered easily by one of these researchers. In an email I described my condition and asked simply if I had the sporadic or the germ-line kind of retinoblastoma. I forwarded it to several email addresses advertised on the webpages of the facilities conducting the research and offering the tests, but I got no response. I also wrote to a leading eye specialist in New York who had made retinoblastoma his key area of interest. But again, I got no reply. Refusing to be defeated, I turned my attention to my home town and made an appointment with a geneticist at King Edward Memorial Hospital. This was where my battle began. ‘You really shouldn’t worry. You have just as much chance of getting cancer as anyone else. Why are you worrying? It’s not going to get you anywhere.’ I could feel my cheeks reddening with anger. I had explained carefully what I had discovered and how important it was for me to find out about the possible threats to my health, and how to safeguard myself from these. The geneticist had listened but obviously thought I was a hypochondriac. I wasn’t going to be brushed off. This was my life. ‘This is something that I never knew about, and my parents were never told about,’ I explained firmly.‘I thought the threat of cancer was just about over. But what I’ve been reading tells me the risks increase every year of my life. I want to live!’ Memories of incidents that had seemed of no importance at the time now jolted me: my mother taking me as a child to the doctor because she thought I had a brain tumour, the persistent nosebleeds I suffered throughout childhood, and the pain I’d had in my leg in my early adult years. The brain tumour

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incident came about because I was very knock-kneed as a child, and at one stage tended to drag my left leg. This visit to the doctor was brief: my mother was told it was normal for children to walk like this and that I’d grow out of it. The nosebleeds were treated by pinching my nose together and counting to three hundred and sixty-eight. The leg pain, the same doctor had said, was nothing. He’d never had a patient with bone cancer. No tests were done. All of these symptoms could have been indicators of the types of secondary cancers I had read about. Luckily they weren’t, but they could have been and none of them had been investigated or taken seriously. The geneticist turned his attention to something he could tell me. And that was the likelihood of me passing retinoblastoma on to my children: ‘With bilateral retinoblastoma, each child you have has a fifty percent chance of being born with retinoblastoma. Is there any family history of retinoblastoma?’ I told him that I was adopted but knew my natural families and no, there was no history. ‘Ah well, in that case, with bilateral retinoblastoma and no family history,’ he said, again looking at a chart in front of him, ‘each child has only a forty-five percent chance.’ He seemed pleased to be giving me such good news. I didn’t think five percent made much difference. But this led me to ask him which type of retinoblastoma I had, the germ-line or the sporadic. ‘You’ve definitely got the germ-line kind because both eyes are affected.’

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‘Why did they tell my parents I had the spontaneous kind?’ I asked. He was reading my old hospital notes, but they didn’t reveal much at all. He began to explain how I got retinoblastoma, and why it was that he was certain I had the germline form. We all have a pair of retinoblastoma genes in every cell of our body. They are responsible for stopping the growth of cancer cells, which are abnormal cells that become out of control. The retinoblastoma gene is more sensitive with regard to the retinas of the eyes, which is where the cancer starts if there is a genetic mutation or a gene is lost. In the case where only one eye develops tumours, first one and then the second retinoblastoma gene has ‘gone missing’ after conception, leaving no protection for the retinas. When both eyes are affected, either the egg or the sperm has passed on a mutated retinoblastoma gene, which then leads to the second retinoblastoma gene going missing. The latter form is the germ-line form of retinoblastoma. ‘It’s amazing that there aren’t more children born with retinoblastoma,’ he explained. ‘We expect everything to be perfect at conception, that every gene is present. But why should it be? It doesn’t take much for a gene to be missing when a sperm and egg come together.’ There was no doubt in my mind now that he was right. I had the germ-line and more dangerous form of retinoblastoma. But did this mean I had no protection against cancer, that I had no copies of the gene? ‘Oh no, you have one copy of the gene in every cell of

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your body. It’s the retina cells that have no copies of the retinoblastoma gene.’ I again went over my concerns about secondary cancers, emphasising the need to set up some sort of monitoring program for myself. I suggested that I give him the addresses of the websites on which I had read the relevant articles. He was interested, and agreed. We set up another appointment. In between, he offered to speak with the relevant cancer specialists to find out what they knew, and what types of cancers I might encounter in the future. He also thought that a colleague of his was undertaking research in this area in the eastern states. I got the details. The next appointment was more successful. The geneticist seemed to greet me with respect. He had read the information on the Internet and spoken with the specialists, as promised. He said they acknowledged the increased risk, but that they were not sure at what rate the risk increased for patients after thirty years of age. This made me wonder if most of their adult patients died by age thirty. I told him that the American research stated that the risk increased by one percent each year, and that as I was now thirty-one, I had a thirty-one percent chance of getting cancer. The specialists were definite about one thing: I could not get a brain tumour. I said nothing about the case I had read of where someone my age had developed a brain tumour. It wasn’t the normal kind of tumour, but it was a brain tumour. I thought it was better to keep quiet because I had won half the battle in raising his awareness of my situation. On the research question we hit a brick wall. He had

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received a letter from the person I had contacted, telling him she was not doing any research on retinoblastoma, and she knew of no research being done in Australia. It was interesting that this person had failed to respond to my letter which had mentioned the name of the referring geneticist. But I was surprised when he suggested I provide a blood sample. In Perth, they were working on a form of genetic testing, and he hoped that in the future the Molecular Genetics Unit at King Edward Memorial Hospital would be able to find out where the gene was mutated, so that the type of retinoblastoma I had could be confirmed. It was also possible that this data could later be used to identify the types of cancers a patient might get depending on the location of the mutation. I agreed and left a sample, knowing that it would be some time before any sort of testing might occur. In fact I only had to wait two years. At a follow-up appointment in the genetics clinic, I found out that my DNA had been run through a special machine which had eventually located the mutation on the retinoblastoma gene. This test confirmed that I had the germ-line form of retinoblastoma. This result would help in the future to discover quickly if any child of mine carried the gene. It was time to move on and find a good general practitioner who would listen to me and take action. My first choice was lucky. The doctor listened attentively as I outlined my medical history and told her about the information on the Internet and my visit to the geneticist. She was pleased to have copies of some of the articles I had brought with me. I didn’t have to convince her. She took immediate action. She

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suggested that we set up regular examinations to keep a watch over the potential danger areas. We set up six-monthly examinations of my skin, taking note of every mole and freckle, measuring it and observing the colour. Yearly ultrasounds of my abdomen would help to monitor my ovaries, as ovarian cancer is a silent killer and is one of the possible cancers I could get. She said that any lump or bump I found that worried me should be reported immediately, and she would treat it aggressively. It was obvious she was thinking of what else medicine could offer me, and suggested I go and see a top oncologist at one of the hospitals to ask if there were any blood tests that could detect early stages of cancer. As melanoma on the retina was also possible, my doctor thought I should speak with my eye specialist next time I went for a check-up. And so my doorknocking continued. The next person to hear my story was fortunately another interested and concerned doctor, a cancer specialist at Sir Charles Gairdner Hospital. She could offer no help with regard to testing or early detection methods, but did suggest I go and see a particular radiation oncologist within the same hospital, who would be more appropriate for my needs. When I heard the name of this new specialist, I made the connection. She was one of the doctors who had seen me at Princess Margaret Hospital’s Late Effects Clinic when I’d last visited some years ago. The doctors there were studying the long-term effects of radiotherapy and chemotherapy, and I knew I could come to them with any concerns I had about suspicious lumps. As retinoblastoma had not been mentioned

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as a possible cause of future secondaries, I hadn’t thought of using these specialists for what I needed now. I sat across the desk from the radiation oncologist and again launched into my story. I wondered what response I would get this time. Would it be a battle? My eye specialist had been dismissive when I’d approached him, believing the information I had accessed on the Internet was non-medical and therefore misleading. This time, I was to be surprised. ‘Yes, you’re right. Retinoblastoma does have links with secondary cancers later in life. The main types of cancers are soft tissue cancers, skin cancers and bone cancers. You’re not so much at risk of bone cancer now that you’ve stopped growing.’ She paused for a moment. ‘The added problem is that you’ve had radiotherapy, and this increases the risk. So the irradiated site ...’ She got up and came over to my side of the desk and traced the bones around my eyes. ‘These areas here are at risk.’ So I had been right! The reluctance I had sensed from this doctor when I had last seen her had been there. And it had been there for a reason: to hold back this extra bit of information, this double blow. I was stunned at her frankness. I had expected the facts to be watered down, expected to be told not to worry. But she wasn’t hiding anything now. ‘What we need to do is act earlier rather than later. If you find anything at all that concerns you, come and see me. Don’t wait. We can’t do any preventative testing like scans and x-rays because of the radiation content. You already know that you’ve had a high dose of radiation and any more exposure could lead to cancer. So mammograms are out of the question

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for you. But I think when you’re in your forties, we’ll have to keep a closer eye on you.’ ‘Why wasn’t I told, or my parents told?’ ‘There is a bit of debate about telling adult patients who’ve had retinoblastoma. There’s a concern that telling them will cause anxiety and depression. But you’re an articulate and intelligent person, so I have no problems in telling you.’ I didn’t dare tell her how anxious and depressed I’d been over the last few weeks. And I didn’t enter into the debate over whether to inform patients about what might lie ahead. I had enough to deal with at that point. She examined me, feeling the bones around my eyes, checking my breasts, lymph glands and neck. Everything was fine. She suggested she see me yearly, but stressed that I should contact her if I noticed anything strange. A safety line had been thrown to me. Lumps in my breasts were investigated thoroughly. Although they were always thought to be cysts, needle aspirations and ultrasounds were ordered. One tiny lump that refused to yield any cells or fluid to the needle was not ignored. Six months later an ultrasound was done to check on its progress. It was still there, and every attempt was made to discover what it was. The news was good. It was a cyst. My anxiety was receding. I was happy with the monitoring program that had been set up, and I decided that as I had managed to get this far, I had a pretty good chance. An email discussion group I had joined began to depress me with its content. Posts about adults with awful cancers kept coming up, as well as posts about children with retinoblastoma that

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wasn’t responding to treatment. I decided it was time to stop reading and hearing about retinoblastoma. It was time to get on with life. The amount of depression I had been through that year, working on my adoption issues and facing all the demons that had been thrown up, was more than enough. My selfesteem had been so low, my self-image so wobbly, that anything could bring me down to that level again. And I didn’t want that.

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* I had always promised myself that if I ever went blind, I would kill myself. This thought had always been so definite that it became a fact, a fait accompli. I can’t remember when I made this decision, but it felt as though it had been with me for years and years. The vision I had, although limited, gave me so much. It gave me freedom, freedom to choose the colours I liked, freedom to move around without bumping into things, freedom to ride a horse without fear of being dislodged by an overhanging branch. To lose my vision would be like losing my life, losing my freedom, losing my dreams. But as I entered my late twenties and early thirties, things began to change. My vision became patchier, more blurred, blotting out parts of my world. Colours began to merge into indistinguishable shades. Horse riding lost its pleasure as my head banged on low branches that I had not seen and my knees scraped against tree trunks as I passed them too closely. Reading books became a painfully slow process,

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and I was forced to take up large-print books, and then talking books became my eyes to the world of fact and fantasy. Just as books began to talk to me, so did my computer, the large-print program being replaced by synthesised speech which read dutifully back to me what I had typed and what I was typing. And, finally, I had to swallow my pride and pick up a white stick even when walking through familiar city streets. They had become dangerous as pavements and roads blurred and became the same colour, street trees vanished into their own shade, and the other side of the road that I was crossing disappeared. I always knew that my vision would deteriorate, but I didn’t know to what extent or what it would be like. I had been assured that my eye was fairly stable. So it was with frustration that I tried to describe to my eye specialist the marked changes I was noticing. His only comment was that he could not see much of a difference and that my eye was still stable. And that’s when my attitude towards blindness began to waver. Maybe it would be easier to be blind than to battle constantly with such distorted vision which only increased my fear and stress levels. Maybe it would be so much easier to cope without the constant struggle of trying to see what I couldn’t see clearly. And it was these thoughts that I admitted to a blind counsellor. Despite these thoughts, I still clung on to a speck of hope that my vision would improve. At my regular threemonthly visits to the eye specialist, at least it was good news to hear that my eye was stable and that there had been no dramatic changes. And there was one option left, one last thing

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that could be done when the time was right, and only then. My hopes lay with the recently developed artificial cornea which would replace my own scarred and battle-weary window to my world. Because of the damage the radiotherapy had done to my eye, a normal corneal graft would be rejected almost instantly and had never been an option for me. The artificial cornea had been designed for people like me who could not tolerate a normal corneal graft. It would relieve the constant discomfort I endured from my sensitive cornea. Although my specialist had warned me that my vision would probably be no better because of the poor state of my retina, I always hoped that it might improve just a little bit, just enough to give me clearer vision. And I was assured that this operation would become available in my lifetime. It was within reach. I had to wait until it had been well tested before I would be considered for the procedure. It was too risky to be tried on me as I only had one eye to see out of, and losing that sight would be final. I could wait patiently for this procedure, because I knew it would happen. But it didn’t. Time ran out for me. The pain should have been enough of a signal that something was wrong. It was a nasty and sharp pain both in and around my eye, radiating out to other areas in my head. I wasn’t one to suffer from headaches, so these symptoms needed investigating. Immediately, my general practitioner arranged for an MRI scan to eliminate the presence of a brain tumour. With the scan revealing nothing abnormal, sinusitis became the diagnosis and I was treated with antibiotics. When the pain continued, I was referred to a physiotherapist for

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work on my neck and prescribed anti-inflammatory drugs. But the pain persisted, and despite the MRI scan showing no problems within or around my eye, my general practitioner suspected that there was something going on behind it. The loss of my vision came suddenly and unexpectedly two months after the start of my headaches. I had seen my eye specialist only three weeks before it happened and nothing had been amiss. I’d made my confessions to the blind counsellor a few days before the crisis. Had I caused it? Was it my fault? Had God been listening, and was this some sort of punishment? The

day before it happened, I’d been able to see incredibly well compared to the past few months. Eagerly, I had set myself up on our sundeck with all my paperwork that needed sorting and filing. I was excited by how well I could read the print on the pages, how dark and sharp it was, and I was going to take full advantage of it. Every now and then, I would look around at the plants on the deck, admiring their colours and their clarity. I managed to trim down all my files, removing old and unnecessary documents, not realising that this would be the last time I would ever see. The manner in which my vision went could never have been predicted. It happened one April day, a week before Easter, while I was getting ready to go back to work after a twoweek holiday. My day always started with the tedious routine of washing the glutinous eye ointment out of my eye with masses of eye drops before being able to insert my contact lens. That morning I was aware of some soreness in my eye that I instantly dismissed as ‘normal pain’. Normal pain came from many different sources, but this particular pain seemed to be

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the aftermath of a wayward eyelash becoming embedded in my supersensitive eye during the night, trapped, ironically, by the lubricating ointment that was supposed to keep my eye from drying out and becoming inflamed. During the night I had continually tugged at the infuriating eyelash, but had eventually given up and accepted my painful sleep. I knew full well that I shouldn’t even think about wearing my contact lens when my eye was inflamed. It would only make things worse as the lens would sit back on the dry, swollen eye rather than being separated from it by a bubble of moisture. But my dedication to my work made me ignore all the warning signs. I inserted the lens into my eye and looked down at my hands to see if I could see all my fingers without distortion. This was what I usually did to test whether the lens was sitting properly and to make sure that it was clean. I stared at my hands in curiosity and annoyance. Instead of experiencing the normal double vision that I got while the tears in my eye filled the space between my eye and the lens, I saw about twenty fingers on each hand. Blinking rapidly, I waited for the tears to do their job. Time was of the essence. My mornings were always rushed: I had to catch a bus at a certain time, which meant leaving the house no later than half past seven. If I missed that bus, the next wasn’t for another forty minutes. All my morning activities had set times. If I lingered over any of them, I would be late. I wanted to be on time on my first day back. My stress levels were beginning to rise. To hasten the filling of the bubble, I poured some more eye drops into my eye. But the strong light in the bathroom showed that the image of my hands had not changed.

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I made a decision. I would remove the lens, cool down my eye with a cold flannel, as I usually did in these situations, and try again. Getting the lens out at these times was always a bit tricky: the heat in my eye caused all the fluid to dry up, making the lens almost stick to my reddened eye. I got it out on the second or third attempt and set about to cool down the now even hotter eye. But on the next insertion, I saw with frustration that my hands remained just as deformed as before. Something inside me began to niggle, sounding a warning: Don’t go to work. Rest your eye. Something isn’t right. But the frustrated, dedicated worker inside me fought against this. I had already planned my day at work, thought about the phone calls to be made, the clients to be interviewed, the decisions to be finalised and the file notes to be written. I didn’t want to let the side down. They were short-staffed, the workload was increasing and my absence would not help. But how would I find my way to the bus with my vision like this? And how would I do my work without being able to see? How long would I last before I would have to come home anyway because of the increasing pain? I paced up and down the kitchen a few times, venting my indecision and annoyance with Mum who had got up for breakfast. Then I made the hard choice. I would have to take the lens out and rest my eye. Work would have to come second this time. And then the drama began. My contact lens would not come out. It took an hour and a half of swearing and begging, a phone call to my optometrist for help and floods of cooled boiled water before the lens finally let go of my reddened eye. The hint of danger that I had sensed earlier increased a notch

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or two: getting my lens out had never been this difficult before. With relief, I returned the lens to its little red container and reached gratefully for the cool flannel to hold over my tormented eye. What I felt when the damp cloth touched my eyelid made me remove it quickly. Gently, I placed my fingers against the closed eyelid and immediately recoiled in horror. It felt as though there was no eye there. It was then I knew that something was very very wrong. Shock hit me. I must have been imagining it. Surely my eye was just suffering from the irritation and inflammation made worse by wearing the lens. Wasn’t this normal? But I knew it wasn’t. My eye swelled when it got hot. I could always feel it. Gingerly, I lifted my fingers to the lid again. There was no mistake, the eye was smaller. Mum confirmed this, describing it as almost shrunken, and we agreed that I should phone the eye clinic. But shock was no match for denial. I heard myself calmly telling my supervisor over the phone that I would have to rest up that day and come in to work the following day. I then casually placed a call to the eye clinic, describing my symptoms to a nurse who promised a phone call back after she’d consulted with a doctor. Fully expecting the reply to be that I just needed to rest my eye, I began making some phone calls to clients who I had planned to contact that day. Working from home was easy for me, because I had a comprehensive memory of phone numbers and issues requiring attention, without needing to consult my files. I pushed the problem with my eye to the back of my mind. After all, the pain wasn’t any worse than normal, and my vision without the contact lens didn’t seem any

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different. Normally without my lens, objects were blurry but not indecipherable, and this was how my sight seemed now. It was easier just to ignore my eye for the time being. The call came just before lunch, summoning me to the eye clinic immediately. My eye specialist was away, but I knew the doctor whose room I entered. I felt some guilt at being there, believing that I would just be told to go home and rest my eye. But the words I was about to hear would not be placating. I had just seated myself in the chair and started to tell him of my worry when I heard him gasp. ‘My God! What have you done to your eye?’ He lifted my eyelid to look more closely, but he needed no bright light or even his eye machine to see that there was a problem. I couldn’t find any words. There was nothing to hide behind now. ‘Have you had an injury?’ he asked. His voice still sounded mystified. ‘No.’ It was all I could get out. His shock had triggered a trembling throughout my body. ‘Why is it so shrunken?’ The question was to himself. Quickly he manoeuvred me to his machine, positioned my chin on the bar and turned on the bright light. He told me to look to the right as far as I could, all the time exclaiming at what he was seeing. ‘I’m going to have to be a bit mean and move your eye with forceps.’ I stiffened in anticipation, but there was no pain as the forceps clamped onto my eye. A sense of relief eased the shaking for a second. But it was only a brief moment of respite.

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‘My God! You’ve got a hole in your eye!’ I was drowning, drowning in fear. It was so strong that I couldn’t control the shaking. I felt like a five year old child, not a grown woman. I sat in silence, aware of what was going on around me, but unable to speak. A retina specialist was sent for urgently and stepped into the room just as my mother was brought in from the waiting area. The specialist needed only a few seconds to confirm the diagnosis, and I sat in silence as plans were made for an urgent operation that afternoon. Through my terror I heard them explaining to my mother that an old operation, in which a special device called a scleral buckle had been used to reattach my retina, had caused the hole in my eye. The buckle had worn out and eroded a hole through the back of my eye. It was happening again. I was out of control. Like a time traveller going back to the past, I found myself once again in my teenage years enduring operation after operation to save my sight. The demon back then had been the bleeding at the back of the eye that obliterated my vision and couldn’t be stopped. My life had revolved around hospital wards, operating theatres and eye clinics. A whole term of school was lost as the battle to save my sight went on and on. But now I was fighting a different demon. This one was more terrifying than any demon I had so far encountered. This demon threatened to snatch away not only my vision, but also my eye, and right now. If the operation didn’t succeed ... I kicked the fanciful thoughts I’d been having out of my mind. Blindness would not be easier than partial vision. I did not want to lose my tiny bit of sight. They had told my parents that I would go

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blind as a child, and they’d been wrong. Now at age thirtythree, I was not yet ready to accept total blindness. But did I have a choice? ‘It’s lucky you came in. You would have lost your eye to infection if you hadn’t.’ Was it too late? Had I ignored the symptoms for too long? I shuddered as I realised that I had nearly dismissed the gut feeling that had urged me to take action, that I’d nearly not made the call to the eye clinic. If I hadn’t ... My fear and terror receded temporarily as some sort of strength, some sort of need to be in control, took over. After being told which ward to go to, I took charge. I knew the hospital so well, not only from my days there as a patient, but also from the time I spent there as a social worker. I gave directions to my mother, but had to constantly correct her as she turned left instead of right and right instead of left, her own shock having set in. In the ward I found myself calmly and assertively asking the resident doctor about the consent form he wanted me to sign. What was I consenting to? If anything else happened, they wouldn’t ... I didn’t have to spell it out. I signed the form that said they were going to repair the hole in my eye. I sent Mum home to get me some personal items, and then I was alone. Alone, and confronted with reality. The shaking returned, this time accompanied by tears. ‘Are you all right?’ A nurse had noticed my tears. She wasn’t my nurse, but this didn’t get in her way, didn’t stop her caring. I couldn’t speak. ‘Is this a shock for you?’ she asked. I nodded, still crying. Gently, she took my hand. It was enough.

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By the time the trolley arrived to take me to theatre, a calmness that was so strange, and yet so comforting, had taken over. I was surprised at how peaceful I felt. But as Mum said goodbye to me, I grabbed her arm, not wanting to let go. We both knew what might happen. The nurses, sensing my fear under the calm, talked to me all the way to theatre, and then instructed the theatre nurses to look after me. The rapid bleeping of the heart monitor when I was connected up revealed my true state. Yet on the outside, I felt so strangely serene. I didn’t feel the old familiar urge to fight against the things that were being done to me in preparation for the operation. The anaesthetist started asking me if I was still awake as the oxygen mask was placed over my nose. I didn’t feel at all sleepy. I almost smiled when I heard my surgeon’s voice in the background commenting on my heart rate. Why wouldn’t he think I was anxious? I waited for the anaesthetist to ask if I was still awake. But he didn’t. Back on the ward, I was aware of the nurses around me. I felt comforted as they told me where everything was, my tissues, my sick bowl and my bell. I turned onto my side to get more comfortable, a move that could trigger the old familiar nausea. I grabbed the sick bowl just in time. Some minutes later a nurse came in to tell me that my mother had phoned and was so happy that my eye had been saved, but sorry that I was feeling sick. I didn’t care. I couldn’t absorb the news about my eye. I just felt peaceful. The nausea had gone. The familiar geometric patterns of vibrant colours that always accompanied eye surgery danced before my eye. I was in hospital for three days after the surgery. The

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doctors thought my eye was doing well after the operation. The stitch they had put in to repair the hole was holding. It was now up to the eye to regain its pressure. This could take a while, once again because the radiotherapy had slowed down the healing process. The check-ups to test my vision left me feeling disappointed and slightly worried. I could see the faintness of the doctor’s bright light, but couldn’t say whether my vision was the same. I decided that the hospital was probably fairly dimly lit, so I tried not to focus on the darkness that was around me. From my hospital bed I studied things like my pillow and the dinner tray to see if I could pick up colour and shapes. But I couldn’t, and I hoped that this was just because it was early days, and that things would get better. My forced calmness turned to despair when I went home. The difference in my vision was obvious. The lights in the house were not as bright as before. Even the powerful bathroom heater light had faded. In my world, the sun wasn’t shining. Each day looked as though the sky was hung with heavy storm clouds that would break at any time. I had to walk outside and feel the sun’s warmth on my body before I knew that it was a fine day. When venturing outside, I hoped that I wouldn’t feel the sun’s rays on me, because the warmth only proved that my vision had still not improved. I didn’t stay out in the sun, didn’t sit and soak it up. I went back inside where the impression that it was a stormy day could stay with me without being challenged. As the days passed, an intense sadness and hopelessness filled me. Nights were long and sleepless, that’s when I shed most of my tears in racking sobs that I thought would never

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stop. Mornings brought no comfort, the ever present darkness keeping me in bed. I could find no reason why I should get up. Night and day became the same: only the singing of the birds told me when dawn had arrived. There was no light to give me hope, no brightness to infiltrate my despair. How did the blind live in the dark? My many hours in bed gave me time to think, to go over what had happened. The words of one of the doctors in the hospital floated around in my head: ‘Well, you’ve got an eye.’ A success for the medical team, but not a success for me, because this eye couldn’t see the light. This eye couldn’t see the trees and flowers, or the cup I had just placed on the table. This eye couldn’t tell me if the curtains were drawn or not. This eye couldn’t read the words on a page. And the other thing that circled around in my mind was the promise I’d made to myself if I ever went blind.

* Nothing was going right and I couldn’t stand waking up each day to my dark world. I desperately wanted to be able to see again, to be able to see the light. My depression grew and grew. It was just after Easter in 2000, but I had no appetite for all the chocolate I had received as presents from my friends and work colleagues. My head became filled with what else the surgeons could do for me, how they could get my sight back, and if they would attempt more surgery. Or would more surgery make things worse? Deep down, I knew that my options were very limited and that further surgery would be risky. But I still had

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hope. And I was also confused about why I hadn’t regained my vision. I wanted to know why. Then for some strange reason my mind began to travel along another track. I began to believe that my vision would not change, that my eye wouldn’t get any better. I began to think that it would be better to lose my eye. The pain in my cornea was getting worse because of the constant exposure to the atmosphere. I wasn’t able to wear my contact lens, the eye’s protective shield, as it was a source of infection and because the eye was still healing. So although a useful strategy to combat my depression would have been to get out of the house, to sit near the river and listen to the sounds around me, I became trapped indoors because of the autumn wind. It didn’t take long for my cornea to react to the wind’s drying effect. My eye drops weren’t having much of an impact, and I started using my night eye ointment during the day. I began to think that I wouldn’t have to be trapped, wouldn’t have to use all the drops and ointments, wouldn’t have to be in pain, if I didn’t have the eye. But this wasn’t a thought that I shared freely: only my mother and my best friend in America knew of the seed. The pain that I’d had prior to my eye rupturing had gone as soon as the hole had been repaired. But now, just ten days after the surgery, a new pain had materialised, much more intense than the last one and centred more within my healing eye. My knowledge of the eye’s recovery process after surgery drove me back to the surgeon before the scheduled check-up time. An information sheet given out by the hospital when I was discharged stated that eye surgery should not result in any

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sort of pain or headaches, and that they must be reported immediately if they occurred. The fact that I was having pain was not good, neither was the fact that my sight had not improved at all and I still couldn’t see the sun’s rays. I could tell by my surgeon’s sighs and his silence that things weren’t good. He tried to measure the pressure in my eye by conventional means, but gave up and used his fingers, gently pressing against the top and bottom of my eye. I flinched as he pressed the place where the hole had been. ‘Your eye is still quite soft. This is what we were worried about ... it could be leaking.’ He turned to his desk and started writing, sighing as he did so. ‘What can we do?’ I asked in a small voice, feeling like a frightened child again. ‘It’s difficult, it’s very difficult. Your eye is not easy to operate on. We may need to go in there again and have another go at it. But ... it won’t be easy.’ I couldn’t ask the questions I wanted to ask. It was enough to keep the tears from spilling out. He left the room to speak with his registrar, and I couldn’t help but overhear them: ‘... eye is still soft ... probably need to give it another go ... couldn’t get the scleral buckle all out . . . could be an infection . . . too delicate’. The registrar, a man from the United Kingdom, entered the room and had a look at my eye. At his suggestion that the eye undergo an ultrasound, I was taken off to another building where I waited for a long time before the registrar arrived. The ultrasound was like any other ultrasound and did not hurt at all. The probe was placed gently against my closed eyelid and the pictures

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taken in seconds. These revealed that my retina was intact, but that there could be a fibrous type of mass that was blocking my vision. The doctor wasn’t sure whether the mass was there, but such a mass could have been the result of an infection. Back in the clinic I waited while the doctors consulted with one another. They decided to operate the following week. I was asked to sign a consent form, allowing them to repair the eye and do another vitrectomy, a repeat of the surgery I’d had when I was fifteen. The goal was to remove the suspected mass that might be sitting in the eye’s fluid. I was also started on heavy-duty antibiotics to fight the infection that had probably set in. It was Wednesday, and the surgery was scheduled for Monday. I was to be admitted to hospital on the Sunday. My admission came much earlier. The pain in my eye intensified. It was excruciating, even for me who usually coped with high levels of pain without medication. It bored through my eye incessantly, as though there was something trying to push my eye out. I was forced to resort to pain-killers, but even these took time to take the edge off the pain. I found myself swallowing the dreaded tablets every four hours, which was something that I didn’t like doing, but I seeed to have no choice. My insomnia got worse, the pain waking me up when I did manage to fall asleep. When I woke on Friday morning feeling warm, as well as being in pain, I made a call to the hospital. I got hold of the registrar, who told me that I could have an infection in my eye, and to come in prepared to be admitted. I panicked. ‘You’re not going to operate today, are you?’ I wanted

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only to be admitted to hospital so that they could help me with my pain and monitor me more closely. I couldn’t do it on my own anymore. I was scared, more scared than I’d ever been before. I didn’t want them to operate straightaway. ‘I’m not sure yet. We might have to.’ Some reassurance came when I saw my surgeon. His fingers pressing against my eye didn’t cause as much pain as they had when I’d seen him two days ago. And the light he shone into my eye seemed a fraction brighter. ‘Yes, it does look a bit better, but I think we’ll admit you to hospital anyway and just keep an eye on you. At this stage we’ll still schedule you for Monday, but I’ll see you on Monday morning and we’ll decide then.’ Further surgery on my eye was always going to be risky. Monday’s operation had been planned only because my eye wasn’t responding. But if things started to improve, avoiding surgery would be the better option. Relief flooded through me. He understood how I was feeling and what I needed. Now I could let go of the controls and the doctors could take over. While the hospital bed was a comfort this time, the two days of waiting for Monday morning to hear whether or not I would be going to theatre was nerve-racking. My fear of the operating theatre returned, and apprehension only made the wait worse. Monday morning finally came and I was given an early breakfast at six am, which I could hardly get down. I was then taken over to the clinic, where I waited to be examined by my surgeon. My anxiety was causing me to sweat and I was very thirsty. I was allowed to keep drinking until ten o’clock,

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but not being able to see anything, I couldn’t get a drink myself, and wasn’t able to attract the clinic sister’s attention. I felt trapped in my chair, surrounded by an invisible world of sound that I could not infiltrate. Finally I called out when I thought the nurse was nearby and was given a cooling and much needed cup of water. It was nearly ten o’clock, and I wondered if this would be my last drink. I held my breath while my surgeon gently examined my eye. Mixed feelings were with me again: please help to get my vision back, but please don’t operate because I am frightened of surgery.

‘The pressure is coming up.’ His voice was positive. ‘I’m going to give you a reprieve today. We’ll have another look on Wednesday and maybe operate on Thursday.’ I asked him why the pain was so bad. At night I had been woken by the boring pain that made me sit up and groan. I had no hesitation in ringing the bell for the nurse to bring my pain-killers. ‘It could be because the pressure is coming up,’ he answered. While waiting for the verdict on Wednesday, I continued to test my vision, hoping to see some change. Mum took me for walks in the hospital, standing me before windows where the bright sun’s rays made her squint, but which got no reaction from me. We went outside to sit in the garden. I stared and stared at where Mum told me patches of sun lay on the ground, but I could see only a slight lightening of the grey that I lived in. By Wednesday nothing had changed in terms of what I

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could see. ‘Your eye is looking better than when I saw you last. The pressure is still coming up. That’s good. I think we should keep you in hospital for another couple of days, then you can go home. We’ll keep you going on the antibiotics.’ It was clear that he would prefer not to do the operation that had been planned, that this might make things worse. This was it. ‘Why can’t I see the light?’ He hesitated before answering. ‘Some damage could have been done.’ The good news he had given me, that my eye was improving on its own, was forgotten as these words became imprinted on my mind in big bold letters. Some damage could have been done. That night I broke down when the nurse came to give me my nightly eye drops. It was the nurse who had been there while I had waited for my emergency operation. She listened to my fears, then gave me the encouragement I needed. She told me not to give up, that it was early days. She talked about fighting the infection by taking more vitamins and minerals to boost my immune system. She had been through a scare herself when she had nearly lost a kidney. Her doctor had put her onto special drinks and foods to help combat infection, and it had worked for her. I agreed to see the dietician in the morning, to start on specially prepared fruit drinks that contained extra vitamins and minerals. When I left hospital I took with me this nurse’s positive attitude and hope. I worked on my diet and drank the special fruit drinks as prescribed. I also used meditation and visualisation to force the infection from my eye. But it was hard

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to maintain the positive thinking. I still couldn’t sleep at night. I would lie awake for hours and relive what had happened, and think about what might lie ahead. I managed to get up in the mornings and go walking with my dog, but the afternoons were mostly spent in bed under a heavy exhaustion that I couldn’t fight. Regular check-ups with my surgeon showed that the eye was still improving. At each visit he reviewed the question of removing the scrap of scleral buckle that still remained in my eye. He talked about removing it in the operating theatre when the eye was more stable. But as the days went by, my eye’s pressure came back to normal, and he thought he could remove it under local anaesthetic in his rooms. And with the improvement in eye pressure came an improvement in my vision. The darkness I had been used to had been gradually lightening over time. The lights in my house were becoming brighter. Then, one morning while I was preparing my breakfast about two months after my operation, I noticed something different out of the corner of my eye. I turned to look at the kitchen table which stood before the French doors. I couldn’t believe what I was seeing and had to check it out. ‘Is that the sun coming through the doors and shining on the floor?’ Mum said that it was, describing how the pattern looked on the floor. But I didn’t need her description. ‘I can see it! I can see it!’ I had never seen anything so beautiful as the sun streaming in through the glass windows of those doors. It

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was so lovely and bright, so yellow, unlike the grey I had been used to. Two and a half months after my eye had ruptured, my surgeon decided to leave things as they were, that the buckle would not cause me any problems. He gave me the all-clear, telling me that I could now wear my contact lens again. He assured me that I couldn’t hurt my eye. He was pleased with the outcome but could not say whether I had lost any vision. It was too difficult to tell without the aid of my contact lens, which would bring my world into focus. Then, and only then, would I be able to tell what my vision was like. He wanted to see me in two months time to check on my progress. I was finally getting clear of hospitals and doctors. Despite the reassurance from my eye specialist, a tiny bit of fear still lived within me about trying the contact lens again. I had formed a negative association with the wearing of the lens, because the last time I had worn it, my eye had ruptured. My eye now felt much stronger than it ever had, but I was still worried that I might hurt it by inserting my lens. With the surgeon’s words in my head, that I couldn’t hurt my eye, I went to my optometrist to have him supervise the first trial of my lens. I thought that my eye might have changed shape, and that the lens would need altering anyway. It took a few deep breaths and a lot of encouragement from my optometrist before I could find the courage to insert the lens. When it was finally in place, it felt different because of the months of not wearing it. Checking it with a special device, my optometrist confirmed that my eye had changed shape and that the lens would need to be adjusted. I looked at what I

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could see. It was all grey and blurry, like being in a dense smog. I asked if this was what my vision would be like. He assured me it wouldn’t, because the lens was the wrong shape for the eye, and the bubble was too big to be filled by my tears. Sighing with relief, I prepared to take the lens out. But it wouldn’t budge. Had my nightmare returned? I could feel my face turning red and my heart rate increase. It was then that my optometrist took over, sensing my panic. He tried a couple of times to get the lens out, but it wouldn’t perform for him either. He explained that my lids had become tighter, and this was the difficulty. But I couldn’t get the past association out of my mind. Finally he resorted to a small sucker-like device to remove the lens. I stiffened when I felt the pressure on my eye as the lens was taken out. For anyone else it wouldn’t have been an ordeal, but for me it was incredibly painful and terrifying. I left the lens with him to work on and went home. That night I noticed that the light beside my bed seemed less bright than usual. I hoped that I was just imagining it. After all, the surgeon had said I couldn’t hurt my eye, hadn’t he? The pain was still with me. Over the next couple of days, which happened to be the weekend, I monitored my vision. By Monday morning I had no doubt. There had been a definite change in my vision. My ability to perceive light had deteriorated. I found myself back in the surgeon’s rooms on Monday morning. It didn’t take him long to see what the problem was. ‘You’ve had a bleed into the eye.’ I was shocked. I had expected him to say that the eye

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pressure had gone down. I had never thought of the possibility of a haemorrhage. I had completely forgotten about them, despite having lived with them while I was a teenager. Now I knew that it was the blood that was blotting out the light. My surgeon was also shocked and saddened. This was a setback. He too had thought that I had turned a corner, that things would only go forward now. ‘I could do a vitrectomy to remove the blood from your eye, but in your case it’s too risky.’ He silently wrote notes for a while before continuing: ‘I think we’ll leave it for a week and see how you are then. Hopefully the blood will be absorbed by the fluid in your eye.’ My instinct had told me that my contact lens would cause more damage, and although he could not confirm that this was the case, I believed it hadn’t helped. My instinct told me something else, and I decided to reveal my inner thoughts. ‘I don’t think that this eye will handle the contact lens ever again.’ It was a bold statement, and I expected him to tell me off for being so dramatic. But he didn’t. He agreed. A week later, I still couldn’t see the light as I had before. ‘We’ll wait four weeks and see if the blood clears by itself.’ I told him that I had another of my three-monthly appointments coming up with my regular eye specialist. He thought it would be a good idea to keep this appointment, and he would speak with my specialist. I suggested that this might be the time to look at other options. I didn’t know what they were, but felt intuitively that something was going to happen, that change was ahead.

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My vision didn’t improve in the two weeks before I saw my eye specialist. Each day I turned on the bright light in the bathroom to see if I could see it any better. I couldn’t. In fact sometimes I thought I was struggling to see it at all. But I kept telling myself that it was early days, that another operation might be the answer. I started to think about other options, like the artificial cornea. Maybe now my specialist would relent and let me have the operation. Maybe now, because my vision wasn’t as good, I wouldn’t be classified as high risk. Also because I believed that I wouldn’t be able to wear my contact lens again, something needed to happen to relieve me of the pain I was living with. I couldn’t live with this cornea unless I didn’t mind being a prisoner in my own home, never being able to go out because of the wind, the heat, the smoke, the airconditioning ... the list was endless. And the pain was so bad that even the lubricating ointment that I was now using hourly during the day wasn’t soothing it. In my mind, now was definitely the time to start considering the artificial cornea as a real option. I was well used to the regular three-monthly visits to my eye specialist. The usual routine involved the examination of my cornea through a bright light on a special machine. I would be asked to look left, right, up and down, before some wayward eyelashes that had turned into my sensitive eye would be plucked expertly, but gently, out of my eye. My regime of eye drops and ointments would be discussed, and any changes made as needed. But this visit was to be very different. Quietly, my eye specialist read through the notes in my

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file. I could feel the intense concentration emanating from his turned back. I gave him a summary of what had happened, and what I now needed to know. I boldly stated that I didn’t think I could wear my contact lens anymore, that I felt my eye couldn’t handle it. When he positioned my head on the machine he did not speak. He did not ask me to look left or right. His silence said it all. I could feel his shock and his dismay. Gently, he extracted some eyelashes that were causing me pain and then he asked me to relax back into my chair. ‘Your cornea has buckled,’ he informed me quietly. ‘Buckled?’ I echoed. ‘What does that mean?’ ‘It’s been very badly damaged. It means that no contact lens or glasses will give you any vision. And I agree with you that trying to wear the lens will only cause more trauma to the eye. It is too fragile.’ ‘How did it get buckled?’ I asked in bewilderment. Nothing had been mentioned about this before. ‘I don’t know.’ He was obviously and genuinely distressed. I couldn’t believe what I was hearing. The shock numbed me. I had no idea that this visit would reveal that I had problems with my cornea as well as my retina. I had half hoped that he would dismiss my statement about not being able to wear my contact lens. And I fully believed that we would start exploring other solutions if I was unable to wear the lens. I was not prepared for being told that my cornea was now useless and beyond repair. The numbness helped me to ask the hard questions.

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What was possible? How could I continue to live with this eye that caused me so much pain because the cornea was so sensitive? Images of how my contact lens had changed my life for the better flashed through my mind. Without it I would not have gone to university, I would not have worked, I would not have travelled and achieved as much as I had. Now, facing life without this protection was a depressing thought. How would I cope? My specialist was clearly distressed and saddened at what had happened. ‘I can do something to improve the comfort, but it will reduce your vision,’ he advised me. He then sat in his chair and thought out loud about all the different types of corneal transplants he had done. But the outcome in my case was always the same. ‘I’m afraid it will reject in a very short time. You will have vision, but not for very long.’ ‘And the artificial cornea?’ I asked hopefully. ‘Your eye is too sick to take the artificial cornea now.’ The word ‘sick’ hit me hard. I had no idea my eye was in such bad shape. For weeks I had been living with the hope that my eye would eventually return to its normal state, or as close as possible. And now ... I came to my hardest question with a strength and calmness I didn’t know I had. ‘So do we keep the eye, or don’t we?’ ‘Oh yes.’ There was no hesitation in his voice. ‘While you can still see light and dark, and while you don’t have any pain, we definitely keep the eye.’ By pain, I knew he meant the intense pressure-like pain

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I had been getting through my eye, not the pain caused by the cornea. The former pain had almost gone since my surgeon had put me on some steroid eye drops. The presence of the scleral buckle might have been causing the pain, but these drops helped greatly. I dared not speak on the way home, trying to stop the flood of tears that were seconds away. Mum was patient, letting me tell her in my own time about the visit. I finally let go when we entered our front yard, telling Mum between sobs about the shocking news. Like me, she was stunned and upset. That night I was revisited by the awful headache-like pain in my eye which I hadn’t had for some time. I knew it was stress-related, but couldn’t help feeling frightened. I was kept awake from two-thirty am until I finally hoisted myself out of bed at seven am the next morning. The specialist’s words kept floating around and around my head, refusing to leave me. If you have no pain, you can keep the eye. I desperately wanted to

keep my eye. I didn’t want to lose it now, not after everything I’d been through. Whereas before my focus had been on regaining the sight blotted out by the haemorrhages, now all I wanted was to keep my eye. That day, the day after seeing my specialist, I could not see the sun at all. My world had gone dark. Two days after my shocking news, the unblemished safety record of the Concorde came to an end. An Air France Concorde crashed, killing all its passengers and crew shortly after take-off from the Charles de Gaulle airport. Investigations showed that the pilot had been concerned about one of the engines and had insisted on some repairs prior to

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his departure. This had been done. All engines had then been checked. As the elegant plane hurtled along the runway at top speed, passengers on other planes sitting on the tarmac could see flames and black smoke billowing from its left side. It was too late to abort the take-off and the plane rose into the air. Two minutes later it veered to the left, flipped over and crashed. It was later revealed that a tyre had blown out during the run down the tarmac and had ruptured a fuel line. The plane being full of fuel, there was no hope. I felt like the Concorde and the pilot. Ever since the surgery three months earlier, I had been so careful to do the right things to bring my eye back to life. At each check-up I had not insisted on being able to wear my lens as I felt the eye was not ready. My naturopath had given me acupuncture to eliminate any infection and to generally boost my immune system. I had supplemented my diet with extra vitamins and minerals to get better. Exercise had been cut down to gentle walks by the river, and I had made sure I didn’t try to lift anything heavy for fear of putting strain on my eye. And just when I had been cleared for take-off, as had the Concorde, just when it was declared that I could wear my contact lens again, everything went wrong. It was as if I, too, had fallen out of the sky. Everything I had believed in had been shattered. I had been living with an eye that I thought was on the road to recovery, that I thought would give me close to the vision I’d had before. But now I was living with a very sick eye that I didn’t know, didn’t trust and that I could lose. But unlike the Concorde and all on board, I hadn’t died. I survived to think about what had gone wrong and what I could have done differently.

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For nights after the shocking news, I lay awake for hours, crying, wanting to scream, talking to God about the unfairness of it all. This was worse than death; I had been given a life sentence because I had to live my life as a blind person. Not only had I lost my sight, I had also lost my identity as a sighted person as well as my identity as a valued employee. I had been terminated from my job soon after my eye had ruptured, a matter that was settled out of court while I was recuperating from the surgery. It was during these dark days that I considered taking my life. But I couldn’t think of a good way to do it. If I tried to throw myself under a bus, I might misjudge it, giving the bus time to slam on its brakes, leaving me with severe brain damage in a nursing home for the rest of my days. I could take a whole lot of tablets, but I didn’t like the thought of Mum finding me dead in my bed. For days I retreated to my bed and stayed away from the phone and email. I recalled how I felt when my father had died and the police had delivered the bad news. Mum had been away on her first holiday without Dad and so I was the only one home. He had been with his doctor when he’d had the heart attack and had been rushed to hospital where, unfortunately, they had not been able to revive him. It was up to the police to deliver the terrible news. Back then I hadn’t wanted to tell anybody right away, hadn’t wanted to tell my siblings because telling them would make it real. My sister was living in Busselton, John was in Queensland and Mark was about three suburbs away in Mosman Park. I had turned to a friend of Mum’s to help me find her and get her back to Perth, and to inform Mark who could then let John and Sue know

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what had happened. Now, I didn’t want to tell my family or friends what had happened to my eye because I didn’t want it to be true. After a while, though, my silence sent warning signals to my friends. I couldn’t avoid telling them. But it wasn’t the revealing of my bad news that was hard; it was dealing with their reactions that I found so difficult. As though being told of a death, maybe my own death, they were shocked, even devastated for me. Some of them shed tears as they heard my story. What had happened to me was driving me crazy. It wasn’t as though I was going through the grieving process, accepting my life without sight, accepting the loss of the visual link with the world. This would have been far easier than what I was dealing with now. I had to make a decision about what to do next. My mind felt like a war zone, with a battle going on between Logic and Emotion. Logic told me that I could not go on like this, living with the constant pain in my eye that could not be subdued. Logic also told me that it was pointless to continue nursing my eye, to keep up all the eye drops and ointments every hour or half-hour, depending on how inflamed my eye was. It was pointless to carry on nursing an eye that would never give me vision, and that was holding me prisoner in my home. Logic said that the answer was to have some sort of surgery to improve the comfort of my eye, which would reduce the vision I had. Emotion knew that the vision wasn’t good: one day was dark, the next filled with a light that got very bright and distracting at times. But Emotion couldn’t let go of this ‘vision’. It was hard to let go of this tiny bit of contact with the visual

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world, which gave some comfort. Sometimes, I thought I could see colours in my clothes, could see my hand moving in front of my face. And then Fear stepped into the arena. I was so frightened of being ‘really blind’. I knew what it meant to be blind, as I had lived with no sight in my right eye all my life. Blindness is not darkness; it’s nothingness, blankness. I tried to describe it to my mother when I was telling her of my fears. I told her to hold out her hand in front of her with the palm facing her. I then told her to try and ‘see’ out of the back of her hand. She was shocked and horrified. I hadn’t realised that I’d never told her what it was like to be blind. She found this concept so appalling, even worse than seeing darkness. I knew that this decision would be the hardest I would ever have to make. And I wished with all my heart that someone or something would make it for me.

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CHAPTER 13

SEEING THROUGH WALLS

* My mother was like the Rock of Gibraltar all through this trying time. She let me feel what I was feeling, let me wallow in my depression, and gently encouraged me whenever I poked my head out of the hole I was sitting in. She let me talk about all the thoughts going through my head, never putting any pressure on me to make a choice in either direction. She did not flinch when I brought up the option of having my eye removed. She understood the pain I was in, and could see how I was being kept a prisoner by it. She felt devastated about what had happened, but was able to gently help me to see the positives of life without pain, and life without my eye. It was this support that I needed most, and it was my general practitioner who gave me the final bit of courage I needed to reach my goal. She talked to me about the sort of person I was, strong and determined, a confident person who knew what I wanted and how to achieve it. She reminded me of the immense struggles I’d had in my life and how I’d got

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through them all. ‘The longer you sit and wait and wonder and don’t make a decision about your eye and what to do, the quicker your confidence will be leeched away. And I don’t want to put you on anti-depressants for the rest of your life.’ She took the opposite view to my eye specialist, who thought that keeping my eye was the priority because it gave me some perception of light and dark. She helped me see that my eye was a liability and would get in the way of the rest of my life. I knew then that I had to go back to my regular specialist and find out what other options were available to improve my comfort, and maybe even to find out about having my eye removed as a last resort. After that, I found I could sleep. Although it frightened me to take such a big step, to make such a big decision, I knew it was the only way to go. I knew this would be the hardest decision I would ever have to make in my life and that it would need every bit of courage that I could possibly find, and more. And I didn’t know if I could do it. But the relentless pain in my eye kept me heading towards this goal. I decided to wait until I had seen my surgeon before taking the plunge and going back to my regular specialist. Maybe I hoped to get some different news, regain some sort of hope. But I wasn’t ready for the next shock. My surgeon’s first words were bleak, which should have warned me about what was to come. ‘Your specialist doesn’t think your eye will withstand any sort of surgery, not even to remove the scleral buckle. He thinks it will pack up.’ I felt the tiny bit of hope inside me begin to die. So there

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was no option of surgery to improve the comfort. Now I only had two options: to live with what I had or to lose my eye. He tilted my head slightly and looked at my eye. ‘Yes, it’s deteriorated over the last four weeks. It’s got smaller.’ ‘Smaller! Why would it do that?’ I was stunned. ‘Oh it’s not the pressure. Your eye is beginning to shrink.’ I couldn’t believe what I was hearing. How could there be yet something else wrong with my eye? How much more could I take? He examined my eye more closely with the machine, but only for a few seconds. ‘Your retina is beginning to shrivel and the fluid in the eye is drying up. The blood in the eye won’t be absorbed.’ He turned to his notes and began to write.‘Do you need any more prescriptions?’ This signalled the end of the consultation. Hang on, I wanted to scream. Don’t just dump me with this! Help me! But when I found my voice, it was amazingly

calm. ‘How much more will it shrink?’ I asked. ‘Oh, it won’t shrink much more.’ Intuition told me that my eye would keep shrinking, but I kept quiet. I started to ask about my options, telling him that I was still having some pain. I mentioned my thoughts about having my eye removed. It was clear he wasn’t keen to answer my questions and wanted to move on to the next patient. I was no longer a surgical case, and this was where our relationship ended.

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‘There’s no point rushing into a decision now,’ he said abruptly. ‘You could live with your eye for another year. The pain might settle. Leave it for another two months, then go and see your specialist. He is the best one to deal with you as yours is a difficult orbit. Having your eye removed can only be your decision. We can only advise. Just remember, once you’ve made such a decision, it’s not reversible.’ I got the sense that having an eye removed wasn’t a palatable option in his view. Why was it that eye specialists seemed to tiptoe around this option, especially when it would change the patient’s life for the better? I didn’t push the point about living with such a sensitive eye and what it meant for me. The pain he was talking about was the headache-like pain being caused by the buckle. He couldn’t understand the corneal pain. But rather than being completely dismissed, I tried to ask about future research into artificial vision, and whether keeping my eye could be beneficial for that purpose. The answer I got gave me the impression that I shouldn’t even consider such a thing as it was way off in the future. I gave up. This time as I left the clinic, I couldn’t hold back the tears. I relayed the events to Mum as we drove home. She was as devastated as me. At home we sat over coffee and I could barely drink. I was shaking, and everything, except my tears, had shut down. Like a good little patient following doctor’s orders, I had made an appointment to see my eye specialist in two months time. It was Mum who helped me to regain my power and to take control of the situation. ‘You can’t wait for two months not knowing your options. Especially with the pain you’re in. I think you should

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get an appointment as soon as possible. You need to know everything, then you can make your decision when you feel ready.’ I picked up the phone and changed my appointment. The next available one was in the following week. Intuition again tapped on my shoulder, telling me that my eye would make the decision for me. I hoped that it would, because I didn’t want to be the one to let the executioner’s blade fall. I knew that the most realistic option would be removing my eye. Making the decision would be one thing, but going through with it would be quite another. I didn’t know if I could do it. When the day of the appointment came, I decided it was time to get some support, and I asked Mum to come into the room with me. I was no longer sure that I would be able to hear all the information on my own. Each visit during the last four weeks had resulted in shocking news, and I couldn’t handle any more. I explained to my specialist that I needed to know what my options were, emphasising that I couldn’t live with the corneal pain. I thought I would have to really fight for my rights, really get it through to him that quality of life was what I wanted, and what I wasn’t getting. But I didn’t. He didn’t question me on this at all. He quickly answered my first question, saying that in most cases the eye could be reconstructed surgically to reduce pain and improve appearance. But in my case the eye would collapse during surgery, so this was not an option. He then outlined what factors he considered when contemplating removing an eye. They were: whether the

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person could see light and dark, whether there was pain, and finally, the appearance of the eye. It was essential that I couldn’t see any light before he would talk about the other factors. ‘So when you get up in the morning, can you tell if the sun is shining?’ he asked. ‘No, not at all,’ I replied. ‘The only way I know if the sun is shining is to walk outside and feel it on my skin.’ He asked me to put my chin on the bar of the eye machine and gently lifted my lids to get a good look. Once again, he did not ask me to look left or right. ‘Yes, it’s deteriorated since I last saw you. Your eye has gotten smaller. It’s beginning to stop functioning as an eye ... it doesn’t know it’s an eye and isn’t behaving like one.’ He gently put a bit of pressure on the bottom of my eye. I wondered what he could see. ‘Can you see my light?’ A strange sensation came over me. Although I knew I couldn’t see the sun, the fact that I couldn’t see his light amazed me. I realised that when I had seen him three weeks ago, I had been able to see his light. Now I couldn’t. So the ‘vision’ I had, the strange blobs of white, grey, red and black, weren’t real. I wasn’t actually picking up anything around me. I told him that I didn’t know that the light was on. He sat back, releasing me from the machine. He didn’t need any further convincing about my desire for freedom. ‘It’s not an unreasonable request to have your eye removed,’ he told me. ‘The eye is now what’s called phthisic, which means it is shutting down, and it won’t change. There’s no point delaying the procedure either, because things won’t get better for you.’

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Mum and I left the eye clinic to consider which path to take. There was a vacancy for the surgery in just over three weeks time. If I didn’t take that, I would have to wait another two months or so. My options were to take the first opportunity and have the operation in three weeks, to wait for a couple of months and have the surgery then, or to live with my eye as it was, treating it with volumes of eye drops and ointments. With the first option, the pressure was on me a bit, as I would have to book myself in during the next few days, or risk missing out. My biggest fear, that of being totally blind, of living with the blankness that would come with having my eye removed, had been greatly dispelled. I had been to see a blind counsellor the week before to get some extra support through this difficult time. She had lost her vision when she was a child, so she knew what it was like to have vision. I had told her of my fears of the blankness, and she had astounded me with her reply that she could see. When we talked about this further, I understood what she meant, and realised that I would never be blind. She used her visual memory to paint a picture of her surroundings wherever she was. I realised that I already did this, especially when watching television. In the past when I’d had bad days with my vision, I’d just listened to the television and created the images in my mind. When I saw that my world would always be colourful and rich with images, I could relax and joke about the benefits. I told the counsellor that we had the advantage of being able to see through walls and around corners. She laughed and told me that the truck whose noise we could hear in the street below was red.

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I knew without any doubt that in the long term, I would be able to live my life as a blind person once I had overcome the trauma of the operation that lay just ahead of me. The hardest thing for me was actually making the decision and going through with it. I didn’t know how I would cope, how I would live through the emotional pain, both before and after the surgery. I feared waking up from the operation to nothingness. I was terrified that I would be thrown into a huge depression straight after the surgery, which I would not be able to shrug off for weeks or even months. Once I’d had the operation, there was no turning back. And despite knowing that I would never be alone in a world of blankness, I still struggled with letting go of my faulty and distorted vision. It gave me some comfort to feel as though I was still seeing. I was juggling between the huge importance of comfort and freedom, and the tiny link I felt I had with the visual world. But there was another major deciding factor. My eye was dying. I had no doubt that it would continue to shrink, and I was frightened of it. It was so fragile now that I was too scared to touch it, to rub it when it felt itchy. It was no longer keeping its shape. I was terrified that if I rubbed it, it might collapse. There was now no doubt in my head that I should have my eye removed. It was like being pregnant and carrying a baby that had died. It was a matter of deciding when to give birth to the dead child. How long did I want to hold on to it, to keep it as part of me, to say my goodbyes? I made my decision and booked myself in for the earliest operation. Having about three weeks to prepare, I set

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myself goals to focus on before the dreaded day, to make it easier. Indulgence was the main thing. I treated myself to soothing baths with essential oils. A meditation candle burned daily, letting off beautiful fragrances that drifted throughout the house. I wrote a poem to say goodbye to my eye, and I bought a fragrant plant, a gardenia, to symbolise a new beginning. And I talked to God every night, asking him to give me the courage and strength I needed to survive each day before the operation, and afterwards. Support came freely from my friends. They visited, phoned, took me out for coffees and lunches. They let me talk about my feelings and fears, and they validated my decision. The overall message they gave me was that the road ahead was hard, but that afterwards, things would get better, that there would be new and exciting opportunities. One friend told me that the exhaustion that hung over me, that sent me to bed every afternoon for a few hours, would lift and I would regain my past energy. One very vital bit of support came from my natural father. On the day that my eye had ruptured, I had heard myself asking my mother without any hesitation to contact him and tell him what had happened. This was a major step forward for me and I knew I was taking a bit of a risk. How would he handle the news? Would he run from it? Would he find it too difficult to hear all the graphic details? Would this be where I would lose him? Up until then I had not spoken with my natural father much at all about my vision impairment and how it impacted on my life. I avoided it because I was frightened of losing him

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if I admitted the difficulties I faced every day. As he had not lived through the many ups and downs in my life — the many eye operations, the hopes and fears that these brought each time, and the recent frustrations as my vision deteriorated — I worried that revealing all this information might be too much for him and cause him to run. He was now an important part of my life, and I didn’t want that part to go missing. But two weeks before this medical crisis, I had decided to be honest. He had been planning a trip to Perth in the very near future, and that would be my time to open up. I had to make a quick decision, take the risk and learn to trust. And the risk paid off. From that day on, my natural father’s support became an important part of my recovery, helping me to deal with the changes in my life and to take the next steps. His support from a distance was as strong as my mother’s. He phoned regularly, sent flowers when I was in hospital, and prayed for me. Before the operation to remove my eye, he asked for my permission for a friend of his to hold a mass for me. He knew I wasn’t Catholic, but wanted to help in any way he could. I found I could seek my natural father’s advice on difficult decisions that I had to make. He was both practical and understanding about the emotional pain I was suffering. When I had been in extreme pain after the surgery to repair my eye and yet had been reluctant to alert my surgeon, he had told me that it was time to let go, that it was time to go into hospital where I could be cared for. Hearing that from him had been a revelation: he seemed to know me better than I knew myself, to know that I tried to be strong all the time, sometimes at a

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great cost to myself. When I faced the decision about having my eye removed, he assessed the situation quickly and accurately, standing right behind me in what I needed to do. The fact that he hung in there, stayed close throughout the traumatic weeks and months, helped to give me the acceptance and strength I needed to carry on. He had not run from me when I had needed him most, and I knew he never would. Our relationship had become stronger and the road ahead was looking smoother. Just a week before the operation, I had an incredible dream, a dream that gave me courage and hope. A little black bull calf stood frozen and forlorn in the middle of a city street, one long thin spear protruding from his shiny hide. A crowd stood nearby, spears at the ready. It could have been Spain, but it wasn’t. Seeing the miserable bull calf not more than twenty feet from me filled me with a sense of urgency. The words were out of my mouth before I knew what it was that I wanted to scream. ‘Get a vet, get a vet!’ I screamed repeatedly. Someone heard my pleas and threw another spear to try to end the misery for the little calf. But this only added to its suffering, and no more spears were thrown. Suddenly, the little bull calf began to trot towards me. Fear grabbed at my stomach and I began to run. I joined a group of people who were also running from the threat. The bull calf was right behind me. I dodged and weaved, turning back on my tracks, hoping to lose him. But he stuck with me, never letting me out of his sight. Finally, I slumped onto the pavement and faced the calf. He trotted up to me meekly. Grabbing at his dangerous horns,

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I noticed for the first time that something was wrong with them. The one on the right was broken off. The other one, the one my hand clamped down on, was thin and papery like straw, and crumpled in my hand. The little bull calf ’s eyes were soft and gentle. He stood looking at me, almost pleading with me. He made no move to attack me. He did not snort or stamp his feet in readiness for charging. He just stood there. I screamed and screamed for help, my voice hoarse and choking in my throat. It was only when someone finally came to my aid that I knew what it was that I was yelling about. I was calling for someone to get a vet to help this poor creature out of its pain and suffering. Somehow, I knew that this little bull calf couldn’t be saved. He was past being saved, and needed to be set free from his pain. I just wanted to help him. He had come to me, and I just wanted to help him, despite my fear of the horns that would not have harmed anyone. I held on to that dream very tightly all the way up to the operating theatre. The little black bull calf gave me some sort of peace, some sort of companionship and guidance that I needed so desperately. But what really made a difference for me was the power of prayer. I had never been very religious, although I had always believed in God. During my initial crisis with my eye, and the months of recovery afterwards, my Catholic friends all prayed for me. At my lowest moment, when I had been told that my eye was beginning to stop functioning, a friend took me to her church to pray with me and for me. During the service I could only cry and cry, and didn’t even get to pray. But the people around me accepted where I was at, didn’t intrude

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in my grief, and yet didn’t exclude me from the service, greeting me and taking my hand despite my lowered head and tears. It was after this service, and at the time when everyone was praying for me, that things changed. Inspirational things began to come my way, as well as meeting people who knew what to say, and how to say it. I saw a story on television about a man, Matt, who had also been born with retinoblastoma. Matt was in his early fifties and had been blind since about age two and a half. He had worked successfully in radio as a voice-over, among other things. The story focused on how his employer had doubted Matt’s ability to work like anyone else. Matt had simply pulled out his braille machine, typed up a script and shown him how he could do it. His employer never regretted hiring him. Matt’s attitude to life and his blindness had a great impact on me. He didn’t let his blindness get in the way of his life. He had no chip on his shoulder, nor any regrets about being blind. But it was the second part of the story that grabbed my attention the most. Matt was dying. He had cancer which was no longer treatable. He stated that retinoblastoma had a habit of revisiting you later on in your life. He had lost a leg to cancer, had had chemotherapy, but had chosen to stop treatment when the cancer spread. His voice was calm and steady when he said that he did not believe he had been dealt a bad stack of cards. He believed that it was just his time to move on. Matt’s words will never leave me. He was the inspiration I needed and need to continue. I realised when I saw the story that I had possibly much worse ahead of me, and that I needed to live my life before it was too late. The reality of what

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retinoblastoma does is not one I can ignore. And yet it is not one that will rule my life. It is a reminder to me that I have choices in my life. My choice is this: I can live well, I can die well, and I can be blind well.

* The bed is being manoeuvred down the hospital corridor to the lifts. I’m out of control. The old fear rises up and takes over. I can’t stop this. This is it. Panic makes my heart beat faster, tears prick my eyes. Outside the theatre, I lie in my prison waiting for that final journey where I will be transferred to the hard cold operating table. A nurse apologises for turning on a bright light just above my head. I tell her it’s okay because I can’t see anything. Everything is dark. Mum holds my hand, stroking it gently. The sedative hasn’t worked. I’m terrified that I won’t sleep, and I’m terrified of being put to sleep because then the awful thing will happen. My eye will be removed, and there will be no going back. ‘Am I doing the right thing?’ My voice is pleading, asking for reassurance. My mother’s voice is soothing. ‘Yes, Darling, you are. Your eye has really deteriorated in the last few days. You’ve got no iris and it points down. It doesn’t look like an eye.’ It’s what I need to hear. Now I know that I have to lose this eye, that there is no hope of recovery. Even though I knew this before, I have to hear it again. Disembodied voices reach me and then the anaesthetist has my hand. Panic! Frantically I try to tell him to keep talking

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to me, to tell me everything he is doing. I know the routine so well, and this fuels my fear. He doesn’t oblige. The needle slides into the back of my hand and the binding is applied. A brusque ‘This is a sedative’ is uttered just seconds before I suddenly feel light-headed. This should make me relax, but it only heightens my anxiety. Now I am really losing control. Now I can’t stop it. I can’t stop them rolling me onto my side, putting a board underneath me and sliding me onto the operating table. I groan in protest, not wanting to go through the steps I know so well. But I am spared. Oblivion greets me, as a peg that will monitor my pulse is placed on the index finger of my right hand. Then voices, familiar and soothing, filter through. My mother’s voice. I’m back in the ward. It’s all over. Now just pain and nausea to endure. My eye has gone.

* My anxiety didn’t fully subside until I saw my specialist the next day. At first, on waking up properly, I thought he hadn’t been able to get my eye out because I could still see. The black, white and blue blobs and streaks that I had been seeing for the past four weeks or so were still there. ‘It’s phantom vision . . . like phantom pain,’ he explained. ‘So it will go?’ I asked anxiously. ‘Yes, it will eventually go.’ I sighed with relief. I didn’t really want to be looking at these distorted shapes for the rest of my life. The white patches danced with little lights inside them, while the black and blue

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blobs changed shape and moved around what I thought was my visual field. There was something else I needed to know. ‘How did it go?’ I hadn’t been able to ask him how he would do the operation, but now wanted to be assured that everything had gone to plan, and that it was the right decision. ‘It was difficult. But it was absolutely the right decision you made. Your eye had wasted away to a tiny, tiny little thing. And the radiation had really ruined it.’ I listened as he explained how the radiation had continued to act on my eye, despite it being over thirty years since I had had the treatment. I heard the word ‘fried’ several times as he told me what he had seen. I felt both relief and sadness at hearing how there was nothing healthy left in my eye, that structures had been ripped apart and destroyed by surgery and radiation. ‘So why did it happen now, just like that? Why did my eye suddenly just pack it in?’ I hadn’t dared to ask that question before. I didn’t want to hear that maybe I had caused it by trying to put my contact lens in when the eye was still healing, or by even wearing a contact lens. ‘The question really is, why didn’t it happen earlier?’ he answered. And that was when the truth finally hit me. I realised that the doctors had been expecting my eye to collapse years ago, to fold under the damaging effects of the radiotherapy. I had been living on borrowed time. I had had thirty-three years of vision when I probably should have had only about onethird, or less, of that time. I suddenly realised how lucky I was.

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And from that day on, my attitude changed. No longer did I feel devastated about being blind, or angry or frustrated at the limitations that I would live within. I felt sadness, initially, at what my eye had endured, at how it had fought to give me sight for so long, and how it had died such a terrible and savage death. Then I felt the exhilaration that people feel when they’re given a second chance. I felt alive and full of hope. My energy was returning, the heavy fatigue was vanishing. I knew I could manage, that I would become a better person for having no sight. Why? Because my other senses told me about the world around me, and my third eye gave me the pictures. I had thirty-three years of visual memory and I knew I wouldn’t forget how to see. Colours would always be vivid and beautiful in my mind, even clearer than before. I felt so strongly that I had been blessed with the gift of sight for longer than I should have been, and I wasn’t going to let that go. I would use it to spring off into the future, and to learn to fly.

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MY SECOND LIFE

* The crowd cheered in the way only European crowds can, with a mixture of hoots, lyrical Spanish and Italian phrases, and the fervent clanging of Swiss cow bells. I took my place on the podium. An announcement was made in German, French and then English before the large and impressive bronze medal was hung around my neck. The trophy found its way into my right hand and the bunch of flowers into my left. In my mind’s eye, the flowers were soft pinks, yellows and mauves. The ribbon from which the medal dangled was in Germany’s colours — black, red and gold — as this was the country hosting the 2002 World Disabled Cycling Championships. The cheering escalated and feet began to stomp as we, the winners, raised our trophies and flowers above our heads in triumph. My head felt light and I smiled deliriously. This was my fourth medal of the Championships, the final tally being three bronze and one silver.

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Only two years had passed since I had lost my sight and I was now an elite athlete competing in my first international competition as a member of the Australian Paralympic Cycling team. If someone had produced a crystal ball one year earlier and told me that I’d enter the field of sport in a big way, when I hadn’t even begun to toy with the idea of competitive cycling and had been on a tandem only twice, I would have written him or her off as just another charlatan. Although sport figured in my life episodically, it had never been to this athletic intensity. I was never the type to contemplate working out in a gym regularly and training on a bike for hours on end. And yet, here I was, a tandem cyclist with developing expertise on the track and road. A strange thing happened when I lost my left eye and entered the world of total blindness. An image appeared in my mind, planting itself firmly but with no hint of threat, and staying with me night and day for some time. It was an image of a young woman running, and I knew instantly that it was me. I was dressed in shorts, a T-shirt and running shoes and looked very focused and purposeful. It wasn’t a jog or a sprint that I was doing, but something in between. My hair was about shoulder-length, which is longer than I have it now, and was flying out behind me as my elbows pumped. It wasn’t clear whether I was running away from something or running towards something. But the image gave me a strong sense of needing to keep going, to keep moving. I couldn’t tell if there was some urgency there or just determination. When I first saw the image, I believed it meant that time was running out, that I had to get on with ... what? ... before it was too late.

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I didn’t connect that image with the idea of taking up tandem cycling about a year into my new world. At that stage I hadn’t launched myself into any new leisure activities, being content with reading, writing and going on walks with the family beagle along the Nedlands foreshore. With the help of social work colleagues from a former employer, I had managed to scrounge six and a half hours of work a week. I thought that this was all I needed, but it obviously wasn’t. When people kept asking me what I did with my time, my answer always sounded so lame. Maybe it fed into the stereotypical image that I detested of the blind person who could only get paid work as a telephonist and spent his or her leisure time at home doing nothing except listening to the radio and tapes. Until I lost my sight completely, I had looked at totally blind people with some sort of sadness and pity. How could they possibly have a decent life when they could not see? There were obviously so many things that blind people couldn’t do. But now that I was in the same position, I knew that this assumption was flawed. There were things we could do, and I had to find out what they were. I fought with this stereotype, but my frustration levels grew as I tried to think what sport I could possibly take up. I thought hard about going back to horse riding, but decided against it. Horses are very sensitive creatures and pick up on the rider’s mood, confidence and abilities. I wouldn’t feel at all confident on a horse’s back when I could not see where we were going. It wouldn’t take a horse long to work this out and use it to its advantage. And what would happen if the horse bolted? I could just see my head smashing into an invisible low tree branch.

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The closest thing to riding a horse was riding a tandem with a sighted rider on the front as the pilot. And that’s where a chain of events began that could never have been predicted. When I first tried recreational riding at a clinic for beginners run through the Association for the Blind, I wasn’t sure I would even stick at it. Either bikes had changed since my childhood days or else age was getting to me. The seat seemed so hard and uncomfortable, and my back and neck ached from being so bent over the handlebars. But then I got the chance to try a timed sprint, racing against all the other tandems in the group. And that’s how I got hooked. My front rider was an experienced and strong cyclist who had been riding tandems for a while. As we flew around the kidney-bowl-shaped bike track that we’d been practising on, I felt no fear as the bike leaned over at a precarious angle through the bends and sped along the straights. I wanted to yell ‘whoopee’ as the wind rushed past us and the bike seemed to pick up even more speed. I heard one of the officials calling out a caution to my front rider as we flew past him on one bend: he was obviously worried about how I was coping with this initiation. But there was nothing to worry about. I was in heaven, and I wanted more. When I learned we had been the fastest of the group, I realised I had discovered something about my new self. I loved winning. My entry into competitive cycling was incongruous for another reason. I had always strongly objected to the belief held by some people with disabilities that they had to excel in something like sport, or conquer world records in pursuits like mountain climbing, just to be valued. Well, that’s how I saw it.

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And I suppose that’s because the only time people with disabilities appeared in the media in a positive light was when they had won a paralympic medal, or climbed Mt Everest. Back then I used to see these people as being pretty desperate to be normal if they felt they had to do something crazy to be noticed. And I decided that I would never do that, that it was going over the top, and I wasn’t going to join the circus. That wasn’t what life was about, and I wasn’t going to bust a gut just to conform. I quickly dispensed with this belief when I became an athlete. The stories in my local newspaper heralding my courage and determination weren’t in any way devaluing or patronising. I could acknowledge that what I was doing was pretty incredible and especially so without sight. Riding in a velodrome on a sloped track isn’t something for people with weak hearts. If the truth be known, I probably wouldn’t have taken to track riding if I’d been able to see. But with only a vague visual memory of the steeply sloping banks that are distinctive to a velodrome, I’d pedalled out on my first ride in the Perth Speed Dome without any fear. After all, the bike hadn’t felt as though it was on an angle of any sort. Some time later, I was taken for a walk on those wooden boards so that I could get a first-hand feel for the track that I had thought was so flat. This experience nearly made me give up track cycling. A rope attached to the top rail had been the only way I’d been able to haul myself up the bank. Hanging on to the rail for dear life, I’d inched my way along the boards until I was in the middle of the bend at one end of the oval-shaped track. Clinging desperately to the rail, I had gingerly edged my foot

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down the vertical drop in the middle of the bend, with disbelief and terror filling my whole body. How on earth did we manage to stay upright on the bike? My next few rides on the track after that had me gripping the handlebars tightly and saying a few prayers. The other thing about the newspaper stories was that they were helping to raise the public’s awareness of what people with disabilities could do. The public needed to know that we weren’t some lower class who needed to be pitied and fussed over, or to be ignored because we had nothing to contribute. We could work just as hard as other people and achieve the same results. I saw the stories as necessary because the media actually didn’t pay much attention to disabled sport. And this was something I wanted to change. The sport of disabled cycling was no mickey mouse sport and I wanted the public to know it. And training six days a week on the bike and three days in the gym was no holiday. Life was finally levelling out for me and it was good. I had found a new career for myself as an elite athlete; I had uncovered some natural talent that I didn’t know I had; and I had a beautiful guide-dog, Lucy, who had come into my life nine months after the surgery to remove my eye. Lucy is a stunning labrador with mocha-coffee colouring through her soft blonde coat. She attracts a lot of comments as we travel around the city and our neighbourhood. Lucy loves her work and does it brilliantly, never walking me into anything, taking care that I don’t trip over any unforeseen hazards that occasionally crop up on the footpaths. Before I gave up my part-time social work job in a

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rehabilitation centre to devote my time to my sport, Lucy would help me get to work and lie patiently at my feet, waiting for the signal to take up her duty again. Off the harness she is a cheeky, fun-loving labrador who thunders madly around the local park, making people’s eyebrows rise when they hear she is a guide-dog. New guide-dogs always take some time to find their feet and settle into their role when matched with their new owners. Lucy’s personality took a while to emerge, but emerge it has. She has been transformed from a shy, sensitive and passive little dog to an assertive one who is very sure of her likes and dislikes. She just loves coffee shops, lying next to my chair while I drink coffee, surveying the patrons and inhaling the smells. Sometimes she finds a rogue crumb on the floor which is quickly vacuumed up. I often find myself being directed into a coffee shop because Lucy wants to go there, not because I have asked her. We always leave quickly with me explaining to Lucy, as though she is my child, that we don’t have time for a coffee today, maybe tomorrow. Sometimes I think I know better than Lucy about where things are and try to override her decisions. I say something like, ‘The door’s back this way — you’ve missed it.’ As she digs her heels in, refusing to turn around, I can almost hear her grumbling under her breath about how stupid I am, and which one of us is the guide-dog anyway? Then she patiently moves forward and takes me through the door I am looking for. Early on I learned how protective Lucy was towards me. Such a special bond is built between guide-dog and owner that it is only natural the dog would come to the owner’s rescue

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when needed. One day at work in the rehabilitation centre, I was seeing a client who I didn’t realise was angry before he stepped into my office. Lucy reacted instantly. She was in her usual position beside my desk where she could see me. But when the client came in, she immediately jumped up from her mat and began stretching her front paws out towards me in agitation. I growled at her to behave, but she persisted, becoming more distressed. I thought her behaviour indicated that she needed to go to the toilet, so I asked my welfare assistant to take her out. But Lucy was back in a flash: she had dug her toes in just outside my door, wanting to return to my office. She barged in the door pulling the welfare assistant with her, and placed herself firmly between me and the client. There she stayed for the whole interview. It was only afterwards that the welfare assistant told me about the client’s body language and his obvious frame of mind. Although my life is taking a turn for the better now, things haven’t always been good since I entered the world of blindness. Adjusting to life without sight has taken some time. My new world was invisible and explosive. It was hard to believe that it had ever been anything else. Sounds from objects that were hidden from me and people’s voices would suddenly erupt near me, giving me a start. Hard objects would crash into me without warning, emerging from nowhere and disappearing into a thick haze. For some time I kept to the safety of my home, too fearful to go out into this new world. When I did eventually leave my retreat I would go out with only one friend at a time to somewhere familiar. I wasn’t sure how I would cope and I needed a lot of support.

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It was about four months before I bravely agreed to go to a seminar with a friend, my first experience of being in a crowded and unfamiliar room. As soon as I entered the room I felt confused and disoriented. The thick haze that accompanied me everywhere seemed worse, closing in around me, blinding me to the presence of objects and people. A jumble of voices floated around within the haze, with one occasionally puncturing the veil and reaching me. The haze muffled the speaker’s words so that I could not fully absorb the meaning. I was relieved when the day ended and I could take my tired brain home. Despite my fear of this invisible and strange world, I was determined not to sink into deep dark depression. I had actually made this decision before my surgery and put a plan into action. I’d started mobility lessons with my white stick only days before going into hospital, and took them up again about a week after my discharge. The intensity of the haze had been tempered by the presence of my mobility instructor, who was always confident and reassuring. We started work around my neighbourhood and local shops before progressing to the city, where the haze became thicker. My first experience at Perth train station was terrifying. I froze when we reached one of the platforms. A cacophony of sounds deafened me: trains pulling up, people talking, loudspeakers blaring announcements. I had no idea where the edges of the platform were and feared moving in any direction. I never thought I would learn how to negotiate my way through such a dangerous environment. My first Christmas without sight was miserable. That’s

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when the black hole first caught me, and I realised it would always be there waiting. All around me was colour: in Christmas decorations, cards, presents and Christmas lights. I yearned to see the colours of Christmas, to drive through the city and look at the lights, to see a Christmas tree with all its colourful ornaments and trimmings. My memory of Christmas wasn’t enough. I missed my vision, however faulty it had been. I didn’t send Christmas cards that year. There was nothing to celebrate. The black hole would come back again, triggered by what, I was never sure. Frustrations at being blind, having to depend on others for basic things like reading mail and choosing clothes? Yearnings for distant memories of sight, losing oneself in a beautiful view, studying intricate patterns on a cup or plate, revelling in the beauty of flowers? Or feeling tired of the constant struggle just to live in an invisible world? Any or all of these would have me tumbling down into the hole where I would stay for a while, oblivious to the joys of life I had been experiencing, aware only of the emotional pain. But the black hole was no stranger: I had found it many times before. I’m not sure what made the haze clear, but it dissipated quickly and I rejoined the world. My senses sharpened up, giving me detailed pictures of the environment around me. I soon found that I could ‘see’ much better than I ever had before. For me ‘seeing’ meant sensing objects around me, as well as visualising them in my mind’s eye. Walking along a street, I could see the trees, gardens and flowers, and feel the parked cars in driveways, and the trees alongside the footpath. I amazed people by being aware of what was going on around

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me, noticing someone walking their dog on the other side of the road or someone working in their front garden. In the city, I could sense doorways and find shops like coffee shops by listening for the frothing noise made by cappuccino machines and the clatter of cups and saucers. The world had rejoined me after being lost in a huge fog, and now it was much sharper than ever before. I found myself thinking that being blind was actually much easier than having limited sight. The way I see myself today has completely changed. It’s almost as though I have come full circle, returning to the innocence and purity of childhood where judgements, differences and discriminations did not exist. No longer does the shadow of doubt follow me, with the threat of sending me into hiding from society because of what people see when they look at me: the ‘retinoblastoma look’. Perhaps it is because I can no longer look into a mirror and see ‘retinoblastoma’ peering back. Or perhaps it is my sole focus on who I am, and not on my outward appearance, that has forced the shadow to flee. Being blind has caused me to lose my self-consciousness, and with it has gone the possibility of thoughtless comments and remarks from people I meet. Some people don’t even realise that I am blind, despite the fact that my artificial eyes don’t move as normal eyes do. When I think hard about it, someone’s outward appearance has never been important to me, has never been the quality I look for in a potential friendship or acquaintance. It is what lies within that matters. When I could see well enough, which was during my childhood and early adolescent years, nasty comments about a friend’s large nose or over-freckled

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skin always surprised me because I hadn’t noticed, hadn’t seen the ‘flaw’ as important. And even after such a remark, the socalled blemish vanished for me. It is sad that I could not hold this belief for myself during the painful years of adolescence and early adulthood. That’s not to say that I don’t encounter awkwardness in some people when they meet me. For instance, if I go shopping with a friend, some shop assistants speak to my friend and not to me, asking what size I am and what colour I would like. Then there’s the person who sees me with my guide dog and asks my companion, ‘is she blind?’, to which I quickly answer, ‘no, my dog can see, but I can’t’. These are the normal things that happen to blind people. It’s just a matter of coming up with quick and witty responses to ease the other’s discomfort. The way to deal with blind people is easy: just treat them as you would treat anyone else. The only difference is that they may not know you are speaking with them, so you need to make this clear by using their name or touching them on the arm. It doesn’t get much more complicated than that. If I could still look into a mirror, would I feel so selfassured? Who knows? But maybe we all need to close our eyes at times and experience the real human being inside ourselves and others. The new me is leaving behind some of the demons that plagued me in the past. Now, I am much more spontaneous, accepting social invitations eagerly, enjoying meeting new people. In the past when something good happened, I used to think that it couldn’t last, that something bad would happen very soon to counter it. But now these thoughts rarely enter my

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head. And more than one good thing is coming my way now. It is as though all the pain and suffering of the last thirty-odd years has come to an end and it is my turn for good luck and success. My determination and self-belief are growing stronger and stronger as the selfdoubt fades. Back in the days when I rode horses, I loved doing well and getting praised for my riding skills. But as much as I loved excelling, I would always do something to lower me from the top position I’d been placed in. For instance, if my riding teacher commented to the group on how well I was riding, I would instantly do something, like loosen my reins, to elicit a criticism. It was almost as though I didn’t want to be better than the rest of the group, or thought it wasn’t possible for me to be that good. But now, as a cyclist, I want to be the best. I love beating my opponents and being the winner. In track training sessions, when I hear a bike trying to pass from behind, I dig in hard, grit my teeth and concentrate on not letting it pass. With my new determination, confidence and love of life, there is no question to me where I am heading. Suddenly, I have a future where none had existed before. My sights are set firmly on the Paralympics in Athens in 2004. The race has begun. I have pushed through many red doors in my life in the way of challenges and barriers. And maybe there will be more. But I am ready for them.

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F R O M J A N E T ’ S N AT U R A L FAT H E R If this book and the life of its author impresses and inspires you, imagine the impact on me, to read this story and learn in detail for the first time, what has been the life of my daughter. Janet’s very existence was unknown to me for some twenty-two years. Her life has been full of challenges, and this intelligent, talented, and determined young woman has met them all. Janet’s efforts constantly inspire me, and those around her, to do better. Her performances on the cycling track have been recognised, but Janet’s whole life has truly been a gold medal winning performance. Whenever the bar is raised to another level, Janet seems to say ‘is that all you’ve got?’ If any of her strength was hereditary, I’d claim it with honour. But credit must go, where credit is due. They don’t give out medals for what Janet and her adoptive parents, Geoffrey and Jill, who raised and loved her, have achieved ... but they should. Her first book, just another chapter in an exceptional life. Bravo Janet! Terry Willesee

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ACKNOWLEDGEMENTS There is one person who gave me the special gift I needed to write this book. And that was the gift of self-belief. Without this, my dream of one day becoming a published author would have been just that, a dream. So to Fran Sbrocchi, a very modest and incredibly talented writer and writing teacher whom I met at the Tresillian Community Centre in Nedlands ten odd years ago, I say the biggest thank you. I don’t know how you did it, Fran, but you helped to unlock the door to my world of words and images. And to the others in Fran’s writing group, I am really grateful for your constant support. I’d also like to thank my close friends who read and commented on draft chapters and kept the self-belief fuelled. To Sylvia Heavens, Annette Cameron, Bernadette Lloyd and Auriel Downs, much appreciation for just being there. Thanks also to Jan Mayman, freelance journalist and friend, for her professional advice and help during the publication process. To Jo Jarrah, my copyeditor, a big thankyou for all your hard work, encouragement, comments and advice during the hardest phase of all — transforming the manuscript into a book. And I could not forget the staff at Allen and Unwin who accommodated all my needs, seeing potential obstacles as opportunities for doing things differently rather than as insurmountable barriers.

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And last, but certainly not the least important person to thank, is my mother, Jill Shaw. She has been my main editor, particularly in the area of grammar and tenses, the things which drive me mad at times. Thanks, Mum, for your tireless poring over hundreds of pages of text and staring at dazzling computer screens. I couldn’t have done it without you.

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Doubt takes hold of the pen, the nib shrivels, the ink clogs, no words will flow from it now. ‘You can’t write, you’re no good,’ the critic’s voice is loud and firm. The hand wilts, the fingers shake, the pen drops lifelessly to the blank page. ‘You ought to be an author,’ my Grandma’s words, soft and eager. But is it really possible? The critic begins to shrink. The hand reaches for the still pen its shape and texture bring excitement. The ink starts to flow, then gush as pictures colour the page and stories, sad and happy, are created to be shared with all who care to read, and those who want to know. And as the ink flows, tension is released. The dual purpose has been achieved: Memories have found their colours and goodbyes have finally been said.