Page Utilities
Glenys Carl, Pan Books (page 7 of 13) Page 7 of 13
'Dr Rosen, you will never see me again. On that you have my promise.'
It turned out that Dr Rosen was right; he would see me again later, but in vastly different and far happier circumstances. Flushed with excitement, I gaze from my kitchen windows into the small and wildly overgrown garden behind our new flat. I'm not seeing the yellow and orange flowers choked with brownish midsummer weeds, or the purple flowers of the jacaranda tree that flag the garden boundary. I am thinking of our new-found freedom and of Scott lying on the couch in our small living room. I'm thinking of the immense effort it took to get him this far. And I'm thinking, now what? What's next? I have no idea. My mind is blank.
When I stormed out of Dr Rosen's office, I wasn't thinking of the next step. Only that I must take control of my son's future, that I could no longer place my faith in the warehouse mentality of state institutions. If Scott were to have a chance, I would need to create my own therapy programme. What would it be other than love, massage and lavender oil? I didn't know, but I would be open to anything – acupuncture, herbs, Feldenkrais, hypnosis, t'ai chi, physiotherapy, moxa, magnets, craniosacral, even crystals, and most of all, people. I would be open to anyone and everyone willing to help, for I knew I would need lots and lots of help.
The very night I announce my intention to leave Coorabel, as if guided by divine hands, I receive a phone call from nurse Jenny at St Vincent's. She has a friend who is moving from a small one bedroom apartment in the bohemian Five Corners area of Paddington. It will be vacant within days, she tells me, and it has basic furnishings – a double bed, a chest of drawers, a couch and a wood kitchen table with two chairs.
The next morning, with great anticipation, I take a bus and walk to Glenmore Street and stand in front of a narrow, four-storey red brick building holding eight flats, on the crest of a slight hill. Mine is on the bottom floor, with an outside stairway that leads directly from the pavement to a partially submerged front door.
My heart races with excitement. Finally we have a home, our first in Australia, and it is perfect. No hallways to navigate. No lifts to fight. Within blocks there is a large park to wheel Scott for fresh air. There's Paddington Market for shopping. And at the rear of the flat a small garden for sunning and tasting nature. It's all so perfect, I'm bursting with joy.
A few days later, in a daring daylight operation, I bring Scott home from Coorabel. As I struggle to manoeuvre him from his wheelchair into the back seat of a cab, an orderly comes running from the building. 'I'm sorry, but you can't take the wheelchair,' he says, huffing and with beads of perspiration on his brow. 'Your visa doesn't allow it.' My fear kicks in, and I am horrified not to have anticipated this. Pulling myself together so as not to sound hysterical, I ask, 'How will I manage without it? Depriving him of a wheelchair is like cutting off his legs.' The orderly shrugs, and rolls the chair away.
In the back seat, I struggle to support Scott's weight and keep him upright. His stiff body slides about on the slick seat as the cab weaves through traffic. I tell myself, 'Be brave, be calm, take deep breaths.' Several times Scott slithers onto the floor, and I exert great effort to pull him upright again. Once, as the cab turns sharp right, he tumbles on to me, burying me under his frame. As I struggle to extract myself from his crushing weight, our eyes lock. 'Mom, we've got to stop meeting like this,' he quips. We both burst into laughter at the absurdity of our situation. In his mirror, our cabby, a young man with a blond pony tail in a Hawaiian shirt, eyes our layered bodies with curious disbelief. Pulling up in front of our new flat, the cabby turns and, laying a tanned arm along the seatback, says, 'How will you get him into your flat?'
'I haven't thought of that yet,' I reply. My eyes sweep the busy street, but I am dumbfounded.
'Should I call the police?' he asks.
'No, no,' I say, 'I'll work something out. Wait here.'
I step from the cab to clear my brain. The front door seems so far. How will I do this? Coming down the pavement is a man in black racing tights on a red, thin-tyred bicycle. I step out, blocking his way.
'Do you have a strong back?' I ask.
He brakes to a stop within inches of me. 'Sure. Why?'
I explain about my invalid son and how I need help getting him into our flat. With a shrug he lays his bike in the grass.I snare two other men, both strong and burly, with the same question. Now I have three, and need one more. Catching the cabby's eyes, I motion for him to join us, and we negotiate Scott's inflexible body out of the cab, down the stairs and through the front door onto the couch. I thank them profusely, and they leave me to manage my new reality. Now we are really alone.
Moving into the kitchen, I look out the window at the yellow and white flowers and the purple jacaranda tree, numb with the seeming hopelessness of my task. It took all that exhausting work to move Scott a few feet with no wheelchair, and now there is just me, weighing in at seven stone. How can I possibly cope? How can I get him from the couch into the bedroom, or to the table, or to the bathroom, or anywhere without a wheelchair?
I do have Jonathan, but Ulla is with him and he must divide his attention. Plus, they are staying twenty miles away. Besides, they have their future to decide. In any event his visa will soon expire and once again I must cope alone. I will need lots and lots of help.
I call Jonathan the next morning realizing that I cannot get Scott in the shower by myself; I don't seem to have the strength to lift him. He says he'll be right over, and pedals his bicycle to where we live.
He tries to stay somewhat dry as Scott sits on a chair with the water running down him. Scott suddenly coughs water that has flowed into his mouth all over Jon and puts his arm up as if to say 'Ooops!' and at the same time does his characteristic slow look up: his eyes look first, and then his head slowly rolls, saying, 'Sorry about that, Jon.' Jon says, 'Hey buddy, don't think twice about it,' and then breaks down. He can only think of Scott, who despite hardly being able to move, only recently out of a coma after such a long time, still has it in him to worry about whether Jonathan gets a little wet. It is so hard to cope with Jonathan's sadness.
From Hold My Hand: A Mother's Journey by Glenys Carl. Pan Books, Pan Macmillan LTD, England, 2005. All rights reserved.
