Forever Knowing

Believe it or not, I don’t actually remember being told I have Cerebral Palsy.

My parents were told when I was diagnosed at around the age of two, so I know that there was a time when they didn’t know that I had CP, but I don’t remember a time that I didn’t.

I’m sure there must have been an occasion when Mum and Dad sat me down and explained it all to me, but try as hard as I might, I can’t remember that conversation. Oddly enough, neither can they. It’s a strange feeling sometimes, knowing that you know something really important but not really understanding where that knowledge came from in the first place. I suppose it’s a bit like being aware that you know the answer to that crossword puzzle that you’ve been trying to do for days, but you just can’t bring the solution to the front of your mind so that you can fill in the little boxes.

The thing is, I never really remember feeling different either. At school, while all the other children sat on the carpet and story time, I was allowed to sit on a special chair, and for a long time at my primary school, I was the only person there with a walking frame. I knew that none of the other children needed these things, but I didn’t feel the odd one out at all. I needed them and everyone could see why so it didn’t matter. All these things felt normal to me in my head because I’d always used them, so when I sat in my wooden chair to listen to the teacher, it felt no different to me than sitting cross-legged on the floor did to anyone else. At home, I would run down the hill outside my house playing Tag with everyone else. If anyone never asked me what was wrong with my legs, the answer would just trip off my tongue the way that telling someone my name or age would.

Maybe that’s why none of my family remember having The Talk (The CP talk that is, not the other talk. I remember that one, believe me). Maybe we didn’t actually have one at all, maybe it was just talked about so naturally in our house that the information just sank in somewhere without me really having to be told. I don’t know if this is possible – I don’t understand psychology and the brain that way.

I guess in the end it doesn’t really matter how I bacame aware of my disability. In many ways, I personally think that I’m very lucky to have always known that I have Cerebral Palsy.

Lessons from my childhood

I only ever remember wishing that I didn’t have Cerebral Palsy once, and I was about five at the time.

It was summer and I was playing outside in the sunshine. At the time I was an only child because my sister hadn’t been born yet, so I’d become very good at using my imagination to make up my own games. That day I decided that I was going to practice running, not for any particular reason, I just felt like it.

I did a couple of laps going from the front garden to the one at the back of the house. I knew that I wasn’t technically doing it right, but I didn’t care. I was moving faster than I did when I walked and I wasn’t falling over. It felt good, and that was enough for me.

After a couple of laps I was starting to feel really proud of myself, it didn’t last long. As I came out of back garden round into the front again, there was another child who wasn’t from my street watching me over the fence. I didn’t know their name and I don’t think they knew mine.

“Ha, ha. You can’t run” the kid chanted, before galloping up and down the pavement to show me what I should have been doing it. I was heartbroken. She was right and I knew it. I’d known that I hadn’t been doing the same as the other child, but I’d been pretending that I was. I felt stupid and pathetic. My illusion had been shattered. I burst into tears and wondered back inside to find my mummy.

When I did I wailed to her about what had happened and declared that I wished I had normal legs like everyone else. My mum just stared at me and told to “never, ever say anything like that again,

“And anyway”, she carried on “you can run in your own little fashion, can’t you?”

For the second time that day I was left feeling deeply ashamed of myself, not because I couldn’t do something, but because I knew that I’d been ungrateful for everything that I could do that so many other people with Cerebral Palsy can’t. That day, I promised myself that I would never wish my disability away again, and I haven’t. Sure, there were other times in my childhood I got upset at not being able to dance like my friends could and stuff, but I think that’s probably quite normal for any kid sometimes, disabled or not. I spent the rest of my childhood telling people that I was proud to have a disability because it meant that someone else in the world didn’t have to. Now that I’m older I know that might not necessarily be the way things work, but it was how I liked to think of things at the time.

Despite my difficulties I still took part in all my primary school sports days on my walking frame alongside everyone else and managed to think about how I usually always came in last because it didn’t matter anymore. I decided not to take up running in the end, not because I couldn’t, but because I realised that I’d much rather bury my head in a book.

So far I’ve stayed true to my word. Yes, I have CP, that will never change, nor do I want it to. More on that later.