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| ISBN-13: | 9781741761771 |
|---|---|
| Publisher: | Allen & Unwin Pty., Limited |
| Publication date: | 06/01/2009 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 304 |
| File size: | 2 MB |
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Always Liza to Me
A Memoir for My Silent Sister
By Cecilia Rice
Allen & Unwin
Copyright © 2009 Cecilia RiceAll rights reserved.
ISBN: 978-1-74176-177-1
CHAPTER 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.
CHAPTER 2if
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 was supposed to have been a boy and the names Margaret and Thomas had been chosen. They had to settle on a name for me at the last minute; Cecilia Jane was found so hastily that it was misspelt in our birth announcement.
We were brought home to Wonga Street. When Margaret and I were eighteen months old the family moved to the dilapidated corner house in Abbotsford Road, Homebush that Mum and Dad still have not finished renovating. Our sunny bedroom, which we shared with Elizabeth, had leadlight windows and a giraffe print on the lino floor. At one end there was a false fireplace. On the mantel shelf was our music box; it would light up and a silhouette of three fairies would glide by to the tune of a lullaby. A few years later, on cracker nights, Margaret and I would sit on the window ledge in our pyjamas, watching. Outside, the house was very bare and surrounded by a white picket fence. One day I climbed the front gate which was too high for me and got stuck. Because no-one was around to help me I imagined that I would have to grow up on that gate.
As babies, our cots were arranged dormitory style. Elizabeth's was white and placed against the window; Margaret's was wood-finished and set against the fireplace on the opposite pink and plaster-patched wall. My cream cot was in the middle. I was in a good position, between my two sisters. The sense of companionship of that time endures. I knew my bed, and my first memory is of waking in the wrong cot. It smelled of someone else's wee, Elizabeth's. The person who answered my cries was not my mother but a cousin with a light brown ponytail, and I could not make her understand the problem.
Our parents, Jeanette and Ken, met at a ball. They can hardly remember that they love each other. Mum has become forgetful and frail, turned into someone else. She drifts back to her childhood with the same optimism as when she left it. Dad, now drained, does not see her as the capable and hardy woman she once was. Then she was well mannered but she could be feisty, an obstetric nurse with dark curls, beautiful skin, red lips and an outstandingly broad smile. She was good with words and loved playing Scrabble. Dad was an electrical engineer, a recreational pilot and a motorcyclist. Always thin, he was a bit taller than Mum with blue eyes, dimples and dark straight hair that did not start to grey until he was in his seventies. Although energetic, Dad was patient with a ready laugh, and would make jokes and play with us. It would take longer for him to give you a clip over the earhole than it would our volatile, always busy mother. To me as a child Dad was clever, and great fun. We each wanted to be his favourite.
They were married in January 1955. Mum was about to turn twenty-nine, an 'older bride'. On their honeymoon Dad had his first asthma attack. Whenever Dad was angry, he didn't go red or launch into a tirade like other fathers, he would wheeze. Together, our parents were strong, upstanding, happy to be individuals, proud of their values and always able to serve others. And sometimes flawed. I remember them embracing in the deep dark past, and then it stopped. In our house we were not corny. Our parents didn't say 'I love you' out loud to each other and they didn't get around to saying it to us. But somehow we gleaned it, or we didn't. So there are as many different versions of their love for each other and for us as there are brothers and sisters.
(Continues...)
Excerpted from Always Liza to Me by Cecilia Rice. Copyright © 2009 Cecilia Rice. Excerpted by permission of Allen & Unwin.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
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,