THE ROADS NOT TAKEN

Everything, on one day of my life when I was twenty-seven, changed forever. A black hole of terror sucked away my perceptions of my safe happy world and left me to reinvent myself in order to survive. On the evening of August 4th, 1970, I was not the same person who had woken up that morning and neither was my two-year old daughter.

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August 4th 1970.

I was tired and heavily pregnant. Nicky, our two-year old daughter, was even more energetic than usual. She raced around the lounge room flinging sea shells from her blue bucket at the wall. This was, through the retrospectroscope, the start of the nightmare...brain irritation.

I put her to bed early and fell into bed myself. My husband, a university student, studied late each night. He checked, as usual, before he went to bed and she seemed to be sleeping soundly.

Nicky didn't wake us up at 6am the next morning. This was unusual, as she would normally run in and jump all over us.

I found her in her cot wheezing and very cold. When I tried to wake her she didn't respond. I gently lifted her eyelids and her eyes rolled back in her head so that only the whites showed.

We rushed her, wrapped in a blanket, to Armidale Hospital. Meningitis was diagnosed. She didn't respond to treatment and became worse. The Air Ambulance was sent from Sydney, 700km away. It took four hours to arrive and Nicky's condition worsened. As she left she was cross-eyed, paralysed down one side and keening; a dreadful high pitched continuous scream which drifted back to me on the cold wind across the runway.

My husband went with Nicky on the tiny aircraft. I went back to the hospital where the birth of our second daughter was induced because the doctors feared we would have to arrange our dying daughter's funeral.

In a drugged sleep, I was comforted each night by a dream. I ran along a golden beach and into a warm green ocean with giant waves where I drowned. It was a peaceful place.

******

In the intensive care ward of Prince of Wales hospital more tests were done and finally a bacterial organism, Haemophilus influenzae type B, was identified.

Chloromycetin antibiotic was administered but the coma had caused massive brain damage and destroyed one quarter of her brain. When Nicky finally awoke she did not know her father. She had become a quadriplegic with no speech, no bladder or bowel control and with the right half of her face paralysed.

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When I saw Nicky again, three weeks after the birth of our second child, I could not understand how or where to begin the long journey of rehabilitation. I was determined to try and restore what was lost and I was very angry with the doctors who would give me no hope. Their reply to my questions was: "Go home and look after your baby. There is a good institution for the mentally retarded in Armidale and Nicky will be well cared for."

I discharged Nicky and took her to where I could get help and information. The Spastic Centre in Sydney was a starting point but I was in such a state of shock it was difficult to absorb all that had to be learnt. And somehow it did not relate to my everyday life. No one told me how I was going to cope; how I could try to make life as normal as possible given the grossly abnormal circumstances in which I found myself.

I had made certain assumptions about the way my family life would proceed. When these could not be realised a long grieving process followed: for the loss of my healthy child, for the limited attention I could give to my other child and for my lost independence and career. It took years to start to come to terms with it all. The mental and physical isolation was ongoing and permanent; I was now very different to other young mothers.

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One question which obsessed me was why? why? why? did this happen to a perfectly normal healthy child. I sought explanations but no one could or would answer. Years later I read Lewis Thomas's essays. He was Professor of Paediatrics at Minnesota University. His book "The Lives of a Cell" contained an explanation that was personally satisfying.

Lewis Thomas says:

"It is our response…that makes the disease. Our arsenals for fighting off bacteria are so powerful that we are in more danger from them than from the invaders. We live in the midst of explosive devices; we are mined… These bacteria display lipopolysaccaride endotoxins in their cell walls and this is read as the very worst of bad news. Every defence at our disposal is turned on. We bomb, defoliate, seal off, destroy all the tissue in the area. It is a shambles."

******

So bacteria browsed and replicated on the membrane the meninges covering Nicky's brain and in her cerebrospinal fluid. Her defence system reacted to contain the invaders and the result of this caused all the damage.

******

Today, Nicky is an independent young woman who can walk, speak, read, write after a long process of rehabilitation. She has part-time work. She is a delight to us. As I watch and listen to Nicky and her friend Sandy, playing their records at full volume; carrying on like a couple of teenagers as one friend put it I ask myself why not? Although they have between them a list of disabilities which reads like the carers' help page of the telephone directory; they have fun.

Sometimes, when we are out, people ask in front of them:

"Are they all right?"

Ladies and gentlemen¾I have news for you. They don't need your pity or your favours. They do need acceptance for themselves just as they are; the way they accept themselves. They live life to the full in a way you couldn't even begin to comprehend.

REFERENCE

Thomas, L. The Lives of a Cell. New York: Viking, 1974.

ã Margaret Robertson/Annis

Note: This article won first prize in the 1996 Victorian FAW 
(Writing about disability). 

Published in The Canberra Multicultural Writers Anthology:
The Universe We Are.

 

e-mails to:  annis_s@netspeed.com.au

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