In this extract from his memoir, ANDREW MARSHALL recalls the aftermath of his diagnosis with the degenerative neurological muscle disease, Friedreich’s Ataxia.
In the months following my diagnosis, we didn’t know which way to turn. We’d met the brothers in Boksburg, which may have put my parents’ minds at some kind of ease, but mine was still being beaten to a bloody pulp. Life had tossed a brick in front of my bike. Now I was flying over the handlebars towards an impossible, uncharted future.
We’d heard about a school that taught a wide spectrum of disabled children. We went to check it out because we didn’t know how much longer I’d be able to walk around the other one. When we arrived, the end-of-break bell had just rung and all the kids were filing back into their classes. Some were walking normally, but others had crutches and walkers and were brandishing very distinctive gimp gates. Some of them were pushing other children’s wheelchairs. One guy was laughing and battling to catch his breath. He reminded me of the monster from The Gooneys. I burst into tears and sobbed. I was slowly coming to terms with the future me. I was one of these guys. Me.
That evening, while pretending to study for a history test, I had a long conversation with myself. I had to face this thing head on. I was going to become increasingly similar to them. I should leave my normal school and grab the disabled bull by the horns. In my mind it was a done deal. I was going to leave Ferndale as soon as possible. I would go and be disabled. Meanwhile, Mom had it in her head that we should keep living as normal a life as possible, for as long as possible. In her professional position, she had witnessed other parents of disabled children molly-coddling them to the point of suffocation. Unbeknownst to me, she had another meeting with the headmaster and some of heads of department. They decided I would do better in a normal school environment. When I was told about it all I protested, angry. I had it mapped out in my head already. I was ready.
Still, a part of me didn’t want to let my old wheelchair-free life go. In the end, I decided to keep trucking. The school was fantastic. The staff did everything in their power to make my life easier. But they had to let the other children know why I was allowed to use the staff staircase instead of walking an extra hundred metres like everyone else, and why I didn’t have to participate in any of the sports. (I also had a few parents report me for being intoxicated. I will never forget the look in one teacher’s eye as she pulled me out of line and tried to see if this was the case.) They decided to make an announcement to the school at Friday assembly. I knew this was going to happen and as assembly drew nearer, my necktie got tighter. I felt as though the old, un-sick me was being led to the gallows. I stood by the doors at the back of the matric gallery while she explained about my condition. No one could see the humiliation and terror swirling inside. I was always a little different, but now my distinction had a label. I was petrified people were going to view me as a freak. I felt like one of the ants I used to torment and then finally incinerate with my gran’s magnifying glass. I slipped out back and ran down the corridor into the toilets. My head was a giant pressure cooker. I really didn’t think I could handle it. After twenty minutes of staring at the wall – twenty minutes of trying to work out how I was going to face my peers, I heard a stampede of kids leaving the hall. I had no choice.
I stood up, stuck my game face on and went out to greet it.