by Take 5 magazine
Mum HID THE TRUTH about my ILLNESS
My grandmother, Stella Loutit, and I had been to a fete and we were standing
on a train station platform in adelaide.
"I want to go to the bathroom," I told her. "I'll be back in a moment."
I had no idea that I was swaying and stumbling as I walked to the ladies'
room.
"But what if something is wrong?" I thought that day, and made an appointment to see a doctor.
"There's nothing major wrong with you," the GP said, after checking me out. "Just learn to pace yourself and try not to get overtired."
Relieved that whatever was making me stumble wasn't serious, I headed for Perth. There I worked as a barmaid and a receptionist.
I was 172cm tall, but suddenly my weight dropped to 38kg. I was skin and bone.
Aware that I was ill and needed help, I returned to my native New Zealand.
I was constantly tired, couldn’t walk properly and had trouble with coordination. My mother, Joan, a nurse, took me to doctors she knew.
They'd talk to her, but never to me. By now, I was using a walking stick.
"I don't know what's the matter with me!" I cried one day. My mother said nothing.
Soon I was on crutches, and then in a wheelchair. That's when I hit my lowest point and almost gave up.
Then I took stock.
"Stop feeling sorry for yourself," I said. "Get on with
living."Determined to be at my brother Ken's wedding in Australia, I booked a ticket. Being in a wheelchair, I needed a medical certificate to fly on my own, so I got one from one of the doctors.
Opening it at home, I read: "Anne Patterson suffers from Friedreich's Ataxia."
I was angry that mum had kept it from me but I also felt incredible relief. At last, what was wrong with me had a name. I wasn't going crazy. I actually had a real disease.
In Sydney, I saw a doctor who sent me to rehab, to learn to manage life in a wheelchair. I learnt that Friedreich's Ataxia, or FA, was an inherited disease, linked to the degeneration of nerve cells in the brain and spinal cord. It affected movement and speech and, although incurable, symptoms could be managed. I also learnt there were only 400 cases in Australia. "Here I am at 26 and every book says I'll be dead by 30," I thought. "I'd better fit a lot of living into the next four years!" So, instead of worrying, I got on with my life and was thrilled when I not only passed my 30th birthday, but my 40th, too.
Then, in 1999, I began writing a book called Sweet FA. The book, published in November 2003, was my way of showing that most people in a wheelchair can live life to the full.
I believe that there's just too much negativity towards the disabled and also even by the disabled.
My attitude is to have a go at anything. And if you can't do it, well, that's okay. At least you tried.
Anne Patterson,
Maroubra, NSW.
Anne's book is available from Anne Patterson, PO Box 890, Maroubra, NSW 2035.