Here are a few chapters from Dissecting Wobbles, to give you a taste of what lies inside. Yes, disability is weird and challenging, but so is life. And within the weirdness – whether you’re disabled or not – lies all sorts of interesting stuff. So check it out…
A few years before I was diagnosed, Tim and I went to a public swimming pool, as we used to do once in a while. We were hanging out, catching some sun and generally talking rubbish when a lady arrived pushing a child in a wheelchair. The wheelchair had smiley face spoke covers on the wheels. The child looked about ten or eleven, and had a radiant smile to match his ride. We watched his mom help him onto the ground, then into the water. She left him to swim and came to sit down next to us. We asked the big question. She said he had a rare neuro-muscular disease. She also said he loved swimming, and now I understand why. I’m no Olympic gold medallist, but there’s a fluid sensation of relatively uninhibited movement in water that is impossible to achieve outside of it – a kind of physical freedom that can’t be matched.
I remember saying, ‘I don’t know what I would do if anything like that were to happen to me.’ The standard words, I guess. The basic human reaction to struggle. I never dreamed one day I’d be sitting in the same boat. Mom (and, to a certain extent, I) knew something wasn’t 100% right with me. Still, this kind of disability had never entered my mind. I’m sure it hadn’t entered hers either.
I was a bit upset by the encounter, but I couldn’t quite put my finger on why, as I’d been exposed to disabled people all my life. Maybe I was upset because this was a child. My Mom hadn’t looked after disabled children while I’d been alive but had before I was born.
When we left the kid was out of the pool, sitting in his wheelchair in the sun. We said cheers to his mom, and then I whispered in his ear, ‘Keep strong buddy, I’ll pray for you.’
I had an uneasy feeling for the rest of the day.
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 neck tie 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.
A few months after I’d been diagnosed I met a girl through a friend’s youth group. I was quite taken with her. I didn’t want to tell her about my body because my mind was still in turmoil. I had a fair bit of denial going on. I was also enormously confused. I needed time to make sense of my tattered thoughts and emotions, so I thought I could separate the Fred mess and an attempt to win her affections. Or, put another way, I didn’t think explaining my future would improve my chances.
She asked me to come and see her while she was babysitting for some friends of her parents. I was over the moon. She wanted little old wobbly me to spend time with her. I’m sure she noticed I was a little different, but I hoped she’d see my clumsiness as cute, while I blinded her with my sparkling flirtations. I will never forget the feeling of trying to impress her. I’d just got my hair cut and thought it looked pretty awesome. I had a new pair of fake Levi jeans, plus I’d borrowed my Dad’s old Motorola with one of those flip out mouth pieces. It weighed about seven tonnes, but I thought it was super fly. So, all in all, I felt pretty damn good. She seemed to like me too, and the evening went well. I remember her parents dropping me off outside and feeling on top of the world. It was as though I’d put ugly Fred’s in a box at the top of my cupboard, to be dealt with later.
No such luck.
Earlier that evening, when the child’s parents came home they must have said something to her parents about my clumsiness. Maybe they suspected I’d been doping (drinking) on the sly. The next day she called me up and asked me what was potting (pun intended).
I pulled my head from the sand and decided to be straight-forward. I told her about this rare disease. I told her I would soon start using a wheelchair. I told her it was a genetic thing, and there was no way she or anyone could catch it (just in case she thought it was contagious). There was a stunned silence, and then she said she thought I should speak to some leader at her church about it.
I never saw or heard from her again. She didn’t answer my texts. I don’t blame her. Looking back at it now, that’s some pretty heavy stuff to dump on a teenage girl. Still, dealing with that rejection made everything else a whole bunch tougher. From that point the idea of girls was exceptionally difficult to deal with.
Ok, heavy, heavy. Let me share an interesting story with you.
Down at the coast I went with Linds, her sister, and some other young guys from the caravan park to a night club in Margate. I was still concerned about how people saw me when I was using the chair, even though I was using it mostly full time. There was no magic wand or abracadabra. I didn’t fall overnight into acceptance of the rest of my life. As with Paddy’s and the beer fest, these guys and girls were all younger, so I was beyond intimidated. I was waiting for someone buying drinks at the bar when a guy came over to talk to me. Today, after many years sitting in this chair, I can confirm I get some proper weirdos coming over. Add some booze and often it all reaches unprecedented levels of strangeness – you wouldn’t believe. Anyway, I didn’t know any of this then, as this young guy said he thought it was cool that I was getting myself out there and not hiding behind my disability. I was chuffed. I thanked him and told him it was quite a big deal for him to come over and talk to me because some people are just so peculiar when it comes to a wheelchair. They don’t see there is a real person sitting in them. All they see is the chair. I said I needed to go and find my friends. He said something that frightened the living daylights out of me. ‘Before you go, just have a feel of my leg.’
I gawked at him, thinking, ‘No way, man.’ Before I could say anything he took my hand and placed it on his shin, which, it turned out, was wooden. Then he said, ‘Feel my other leg.’ I was convinced he had some sort of disability fetish going on – surely next he was going to ask me to feel his middle leg! (I was telling this story the other night to friends, one girl said that the third leg was probably also wooden.) After my refusal, he pulled his pants leg up and showed me another prosthetic. He told me he was an athlete, and that later on in the year he was going to run at the Paralympics. I should look out for him, he said, and remember his name. Oscar Pistorius!
This, of course, was before Oscar became the blade gunner. For years, because of this episode, and because of the values he seemed to represent, Oscar was an inspiration to me. Now I can’t help think about how slippery the idea of acceptance is. The public Oscar was such a powerful figure, and so obvious in his pride in who he was. Then, during the horror murder trial of his girlfriend, we see there is, and always, was, another person in there. Someone still suffering from shame, and paranoia, and much other emotional damage. No matter what someone says, or how they act in front of you or the world, it’s pretty much guaranteed there is something else going on inside.
I told you earlier about swimming with the dolphins. Well, I have had another similarly remarkable experience since then I must share it with you. This time it played out in the tree tops growing out of a perilous gorge.
Sandy P and Dave gave me a birthday gift of a canopy tour in the Magaliesberg. They organised for me to be helped from zip line to zip line, and then back up from the bottom of the ravine. This was, let me tell you, no easy feat. The folk running the place welded poles onto the bottom of an old office chair. This allowed Dave and four other guys to lift and carry me to the menacing, stomach churning cliff face. They had poured me into a harness beforehand, then tied it and me up using a trillion knots and safety straps. It was impossible to fall out. I felt like a Pharaoh being taken to view his pyramids as they dragged my posterior to the gorge. When they clipped me to the slide I felt like my heart might explode out of my throat.
The first slide was incredible. Excitement mixed with genuine fear for my life and amazement that somebody in my position could experience this. The sound of the runner moving along the steel cable will zing through the back of my mind for the rest of my life. Nine more cables varying in length zig- zagged me down to the bottom and the feeling of freedom and liberation, not only from flying through the air like Tarzan but also from knowing you’re in the bush – all your senses are being bombarded by it, the bush, climbing up rocks and pushing away branches as you move… it was intense. It was familiar, this feeling, but I had thought I would never feel it again. The last time these sensations were around was during my scouting days. More than that, and even though I was being dragged over some pretty rough terrain and I wasn’t doing this thing independently, I felt normality touch me again – this simple thing that had eluded me for so long. Listening to all the joking with Dave, Sand, her mom, another friend and the guys that worked there set my heart at ease. It’s hard to explain, but here again getting that feeling back, even if only for a few hours, made accepting my real life a little easier.