Always Liza to Me: A Memoir for My Silent Sister

By Cecilia Rice

This is the story of the Rice family, and of Liza, their severely mentally-retarded eldest daughter. It's a story about what it was like growing up in a large, rowdy household forever in the thrall of this unknowable, unreachable child. When she was small Cecilia always believed Liza would not survive to adulthood, that she would never be her “problem.” But she did survive. With warmth, wisdom and humor, Cecilia reveals how her family came to think of “the Liza problem” as their own and how, through the passing of time and a mysterious process of acceptance and forgiveness, their fears and resentment turned into fierce loyalty and abiding love. This is more than a memoir about the difficulties, challenges, and rare rewards that come with caring for a disabled child.

• Language: English
• Publisher: Allen Unwin
• Release date: Jun 1, 2009
• ISBN: 9781741761771

Book preview

always

liza to me

a memoir for my silent sister

always

liza to me

Cecilia Rice

On page 149, the ‘moment of clarity’ is discussed in Marjorie T. Goodban, Ph.D,

‘Communication Intervention in Cornelia de Lange Syndrome’ at www.cdlsnsa.org/publications/

communication-intervention-in-cdls.html, date accessed 5 February 2009.

Extracts on pages 172 and 173 are from a report entitled Western Sydney Developmental

Disability Service, Rydalmere Centre, Psychological Report—Ms Elizabeth Rice, dated 27 October

1998 © Department of Ageing, Disability and Home Care (DADHC) on behalf of the State of

New South Wales.

First published in 2009

Copyright © Cecilia Rice 2009

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 and 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 per cent of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to Copyright Agency Limited (CAL) under the Act.

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10 9 8 7 6 5 4 3 2 1

To Nettie and Ken

contents

1. veritas

2. if

3. baby doll

4. brotherly love

5. departures

6. school

7. the mountains

8. deb

9. the outdoors

10. leaving childhood

11. differences

12. freedom

13. margaret enquires

14. heartbreak

15. dreams

16. venturing

17. heartbeat

18. moving on

19. the inner corridor

20. the unforsaken

21. new millennium

22. mum's outing

23. happy returns

epilogue

postscript

acknowledgements

Once when I was a little girl I heard bleating from behind a fence.

‘Mummy! Listen, a sheep!’ I cried out in wonder.

A sheep! Here near our home, in a yard backing onto a strip of park beside the canal ...

My mother’s eyebrows collapsed, her mouth dropped and went soft. I could feel her love reach out to say something, but it didn’t have enough time to hold me and stroke my hair and whisper into my thoughts before her words reached me.

‘It’s not a sheep, darling. It’s a retarded man.’

Suddenly the grass was cold and wet, the fence was looming. My tummy turned sick, my smile hid in the dark place behind my eyes, the sunlight in my hair went slinking away to shadows.

I was sad.

So sad that in our secret world a sheep wasn’t always just a sheep.

I wished I hadn’t heard the bleating, but I couldn’t make my ears go backwards. And then they started playing the sounds from the ward where my sister was kept, where sick people banged their heads and made noises like animals and where my face and arms got scratched and Mummy bled from nail cuts and bite marks.

I was ashamed.

So ashamed that I had forgotten, when I heard the bleating. Ashamed that I had reminded my mummy of the awful thing that she pretended couldn’t hurt us.

We walked on in silence. I tried not to see through the cracks between the palings, but I saw anyway. My mummy saw too: there was a sheep there. And she had turned it into something ugly for her baby.

For years I carried that sadness, pushing it deep inside me, trying not to let it frighten me and take the sunshine from my hair again. But it surfaces whenever I’m too weak to keep it away.

From the pregnancy journal of Deborah Rice, March 2000

1. veritas

Veritas. The truth is a complex composite, ambiguous and sometimes elusive.

There were eight people in our family: two parents and six children. Eight individuals—each with an image of themselves and of the other seven, totalling sixty-four characters. One of us cannot tell her story. She cannot talk, read or write. Her version of who she is must be told through the eyes of others, one thread in a family life pulled and unravelled to see how she shaped us and our images of ourselves, and how we shaped her.

At my book club, a friend who is studying the human brain says, ‘A person cannot recall any events before the age of five. It’s impossible because the brain does not make the chemical changes necessary for recollection until five to seven years old.’ She will not allow me to dispute this.

But I recall myriad events from my early childhood. I can remember washed blue lattice, the figtree in the backyard burdened with ripe fruit, my sister’s smell, the pattern on our bedroom floor. Long outings in the double pram with a dark-haired girl the same size as me; Margaret, my twin, watching my daddy push another pram with the fair-haired one also the same size as me. The position and feel of my cot. Playing and being accused of making the new baby cry.

I remember going to the hospital to collect another baby boy, my mother’s red lipstick, the smell of her girdle hanging on the bathroom door. I remember identical dresses in different colours, mine usually blue or green. The skin of Grandma’s crinkly, wrinkly neck. The abscess on my thumb from sucking. At six years old, looking at my mother’s tummy when she explained where babies grow, saying there was another one in there. And how I got my wish for a girl.

Connecting me to many of these memories is one person who belonged to us but went away, too early. The person who has infiltrated dreams and nightmares and been the subject of fantasies of a life that might have been different and should have been better. Today, at fifty years old, she stands at just four and a half feet tall, her neck dusted with hair. Her skin is leathery but she is solid and healthy. Elizabeth—Liza to me—resides in the ward of an institution. She is what Oliver Sacks might describe most respectfully as a ‘defective’.

The special school bus that came to collect her on some days had a sign that shouted ‘SUBNORMAL CHILDREN’. After that, I remember spelling to my second-grade teacher the words ‘m-e-n-t-a-l-l-y r-e-t-a-r-d-e-d’, the description that had taken over from ‘subnormal’. Then it became ‘mentally handicapped’. By the time we left primary school it was correct to say ‘intellectually impaired’ and then ‘intellectually disabled’. Liza was once a ‘patient’ and now she is the ‘client’.

The descriptions changed slightly less often than the declensions of her name: Elizabeth, Liddybet, Eliza, Liza, Lisa, Lizzie and, most recently, Queen Elizabeth, each one given by her carers, linking her to her surroundings but, unlike our own nicknames, bestowed without any say by the bearer.

Mum used to stamp numbers on lottery tickets for the special school after dinner in front of This Day Tonight. Dad would work the chocolate wheel at her school fetes. One time Margaret won a beautiful doll early in the morning and I spent the rest of the day trying to win the matching one. It was one of my first lessons that although we looked identical, our lives would not always be the same.

When we were little and on outings we would feel people staring at Liza. One day, waiting outside the pharmacy for our mother, a neighbour asked us very gently what was wrong with our sister. We explained, as taught, ‘she doesn’t understand’. She started to walk on small twisted feet at four years old and once could say a few words that have now gone.

Liza probably has Cornelia de Lange syndrome, a rare condition resulting from an accident in the combination of her chromosomes that affects her appearance, intellectual development and behaviour. The precise diagnosis was not available when she was a baby and we first found out about it when she was twenty-seven years old. Our parents had been told she was ‘mentally retarded’ and that is the way I think of her. These days, if ‘retardation’ is used it is proper to regard a person as having mental retardation rather than being mentally retarded. But I will describe her as ‘mentally retarded’, the term I grew up with, without any intention to mock or demean. To me it offends only when misused, and it connects me to my special, silent sister.

Now we inherit the management of this lingering child. At ward meetings we hear the infinite story of limited resources, and the best options for Liza’s future care. We have dealt with recommendations for age-appropriate possessions and privacy, the need to complete individual plans and transition plans, and the faded possibility of group housing. The recommendations of the psychologist and the speech therapist, the rearrangement of the activities program and the timetabling of the bus for excursions were once fully the domain of our parents. Now they are being delegated to us, Liza’s siblings.

It would be too much to ask a person without blood ties, suddenly handed the care of an adult person with mental retardation, to feel fierce love. I know I would not. All the same, I have been shocked to hear that an immediate instinct for many encountering the ‘defective’ is to want to kill. If not love then maybe pity or detachment would surface, surely not violence. But we are all capable of contradictions. I was once convinced that if I gave birth to a retarded and deformed baby, I would smother it before it could take its first breath. This would be out of cold-blooded pessimism, not passion. But something has changed.

I suppose if we understood love fully, why and how we love the way we do, we would not make mistakes with it. We would never love the wrong person, love improperly, with too little or too much care, or with too much severity. We would not ache for love and then withdraw it. We would love perfectly and forever, we would never distance ourselves from the vulnerable.

How can I explain my feelings for a person who sits at the other side of a coffee table, features pinched in, teeth ground to small yellow pips with breath of stale saliva, arms crossed and unusually formed hands occasionally reaching for her groin? The dark eyes stare as if knowing all—everything that you have ever done without her. Or maybe that unkempt look of wisdom, low eyebrows, a rugged frown and downturned mouth reflect nothing but a mind empty of all expectation.

If you take Liza without reference to magazine beauty, take her handsome hairy, wizened face, her hunched stance, her stooped bearing, you are forced to focus on no-one else, not passers-by, not even yourself. This one individual has aroused terror, fear, indifference, guilt and wonder. As she shakes her head and runs her hands through her hair, dissolving into laughter, affection is stirred. Her terms are unconditional, her feelings, so spontaneous and magnificent, can only be returned.

Yet not everyone reads it as love. Some are not touched, some do not put themselves in a position to be, some are close but feel nothing. Liza does not reach them. Their thoughts do not stray to her in idle moments, when it rains they do not hope that she is comfortable and safe, and when they get out of bed they do not wonder what she might be doing at the beginning of each day. She does not create the same bonds. Love is unevenly beheld, unevenly bestowed.

When they were handed her fifty years ago, our parents did not reject their baby as others might. She was precious and alive— just. Small, underweight with white hair and translucent skin. They knew something was wrong but did not know what. With loving care she became round and beautiful. Years later when they talk of her, they return to that time before brain damage was diagnosed and they were told not to think too far ahead.

Maybe when we engage with Liza we go back there with them, to a time before she became possessed, before she turned into the claw that would trap and maul, the monster sibling that she was to our baby brothers and sisters. Before she had to be sent away.

We were promised by our parents that we would not have to be responsible for her, that arrangements had been made forever, that they had made their awful decision to send her away so as to spare us, and sparing us would somehow make their grief worthwhile. It was as if they had promised not to grow old. Not that we planned to shirk our responsibilities; it was just that our lives had been ordered on the assumption that Liza, our family’s burden, would not be passed on. Leaving us free to go out into the world unencumbered, unrestrained. To pretend, if we wanted to, that she did not exist.

Since then we have been on a journey. She was different and, because of that, so were we. She became wild, unnamable. Things happened because of her and they made a difference to all of us, even if for some the memories are contradictory. We adapted and regenerated. We took our adult paths, pursuing our careers, making friends, starting families of our own while our parents maintained a devoted vigil that she is likely to outlive. But from the background she began to haunt us. And then a door was opened and we started over, each of us at our own pace returning to Liza. And she was there waiting for us.

This is Liza’s story.

2. if

Today the family gathers for a birthday party. Our sister Liza, severely mentally retarded and not expected to live past twenty, has turned fifty! ‘Where have the years gone?’ asks our mother. Our father makes a short speech, toasting his eldest daughter. The guest of honour sits at the head of the table, smiling. A brother unveils the cake, yummy chocolate mud. We all clap and sing ‘Happy birthday dear Liza!’

It seems like a typical family gathering, but there is something not quite right about us. We are at a food court in a shopping centre and when people stop and stare it feels almost the same as it did when we were kids. Then, all we wanted was to go unnoticed. Whether or not Liza was screaming, pulling hair, waving her arms, whimpering, saying one word over and over or just sitting quietly, her low-splayed ears, turned eye, flat nose, downturned mouth and calipers would give us away. People would see she was different, take in every inch, look to the parents, to the brothers and sisters, back to Liza, back to the parents. Checking the details to measure the extent of the affliction, asking themselves silently, ‘Where does she fit in with that crowd of children? Was she born between this child and that? Why did the mother have more? How do they manage?’ Leading finally to, ‘How would I cope with this?’ We would feel their curiosity and then their pity. Sometimes we felt shame. Why couldn’t we just be like other people? But we are tougher now. We concentrate on Liza sitting in her wheelchair, enjoying her birthday party.

Margaret and I grew up with the notion of ‘if ’. While our parents never openly speculated, we used to secretly imagine having Elizabeth, as she was called then, as our big, blond, normal sister. She would be a year ahead of us at school, join in our games and take sides in our battles at home. There were other permutations for our rewritten beginnings but each gave the wrong result for me. Before Elizabeth we had a brother who died. If Gerard had lived, then Elizabeth would not have had time to be born, but then our egg might not have split and I would not have been born either: the children would have been Gerard and Margaret. If a different sperm and egg had created Elizabeth then she might not have been retarded, but then our sperm and egg might not have met and we would have been a different person, and the children would have been Elizabeth and Margaret. I wouldn’t exist at all. I would be just a star twinkling away in the universe, never having these thoughts.

‘Mummy, Mummy! What was it like to have two babies at once? Did it feel like a present for losing baby Gerard?’

‘No.’

‘Didn’t it make up for having Elizabeth?’

‘No.’

It was better to work on the Last Judgement scenario. I loved babies. I would look for ages at photos of babies in the newspaper and read about them over and over, drinking in their baby details. I hoped that one of the mothers of the large families down the street might abandon a baby so that I could keep it. I would think of my permanently newborn brother Gerard in Heaven, imagining that on Judgement Day I would get to nurse him, even though he should have been older than me. There he would be, dressed in a cream layette, kicking his little baby legs and holding my finger with his little baby hands waiting for me to pick him up and cuddle him. It was a perfect reason always to be good, to avoid Hell or a stint in Purgatory.

On Judgement Day, Elizabeth would be normal.

By the time we were born, Elizabeth, at just one year old, was small but plump and angelic with a bright face. She could not walk or talk but she could laugh and bounce. Dad called her ‘Liddybet’ and she would play jack-in-the-box, jumping up from inside a big cardboard crate when he came in from work. There are photos taken while Mum was in hospital having Margaret and me of Elizabeth, pale, with a ribbon in her curls, wearing little ballerina shoes, leaning against a white wooden chair and looking very pretty.

We were dark, hairy things. Hair even covered our ears. Two cranky-looking babies. ‘Ugly ducklings!’ said our grandmother. Our parents knew that they were having twins; Mum felt two different sets of kicks and then had an X-ray to confirm it. Margaret Mary was over five pounds and I was over six pounds. Margaret’s face was longer and mine was rounder. There was one placenta and we shared an ‘I’ve arrived’ photo. There hadn’t been a photo of Elizabeth as she was too sickly. Because there were so many male–female twins in our extended family, I