Me and Hemiplegia
You might not even notice it. You might ask me as many have, if I’ve “done something to my leg” when you notice that I walk with a limp. You might wonder why I’m doing something awkward like taking my phone out of my right pocket with my left hand. But I think it unlikely that you would look at me and see a disabled person — I have 3 decades’ experience of trying to look “normal” and I’m pretty damn good at it.
I was born with hemi- (half) -plegia (paralysis). Apparently so is every one thousandth person so I’m only a little special. In my case it is relatively mild and affects the right side of my body, causing it to be weaker and less dextrous than my left. I’m lucky that my disability is mild, and I don’t pretend to understand what living with a serious physical impairment is like. I imagine that for such a person, one of the major challenges in life is dealing with everyone else’s low expectations of you. Sadly people don’t expect a lot from someone in a wheelchair and so such a person has to continually prove themself. For a not-so-visibly disabled person like myself, the challenge can be the opposite — people have completely normal expectations of you which you can’t always meet.
The world is full of things designed for people with four well functioning limbs — sports, musical instruments, cars, bikes, games consoles etc… because most people have four well functioning limbs. A lot of these things are also designed for right-handed people because most people are right-handed. Whenever I try anything new, I know that there will be one of three outcomes — 1) I can do it, 2) I can do it once I find my own way of doing it, and 3) I can’t do it. The last outcome can be immensely frustrating, thus trying new things has always been a nerve wracking experience for me. I dread that moment of realisation that no matter how hard I try, I won’t be able to do something that it seems everyone else can do. It is in that moment that I feel disabled — and different.
Often it hasn’t been my choice to try something new — I’ve just found myself in situations where everyone around me is doing something and they’re assuming I can do it too. More often though, it has been my choice because I’ve learnt over the years that there is one thing worse than the disappointment of finding out that you can’t do something — not experiencing new things because you’re afraid to try. Discovering the hard way that I really couldn’t snowboard felt awful. Accepting that I’d never master the guitar was depressing. But, realising that I could ride a motorbike was amazing.
Over the years I’ve tried several different approaches to coping emotionally with my situation. I can remember as a child hitting my right arm on things as if it weren’t really a part of me. In those moments, I was my left side venting its frustration on my right side for not keeping up.
Teenage years are tough for most because that is when we begin to compare ourselves to everyone around us. In my teens I convinced myself that all the things I struggled to do (e.g. sport) were dumb. I took to drugs and drinking because those were things I could do well. Hanging around people who thought passing out on a floor was the best life could offer made me feel good about myself.
In my early twenties I became quite religious and very much bought into the belief that God was going to heal me. Not surprisingly to anyone familiar with reality, God didn’t heal me. Looking back now I despair when I think of all the things people said to me with the best of intentions about my disability. Lots of daft ideas about how God makes people disabled so he can be “glorified” when they are healed. I know they meant well but the idea that God was going to fix me it just made it harder for me to accept myself as I was.
Eventually I gave up on the prospect of divine intervention and moved on to the next strategy — pursuing acceptance from the opposite sex. I was convinced that I didn’t need to do the hard work of accepting myself and that someone else could do that for me. I thought that the attentions of someone (seemingly) physically perfect, would validate me as a human being. Needless to say, this was an emotionally disastrous pursuit. I was only interested in those girls who weren’t interested in me because I believed that only they saw the real me.
All of these failed strategies finally brought me to a conclusion about life which now seems obvious: we have to be able to look in the mirror and like the person looking back at us — even if they are a bit asymmetrical. I know it sounds like something from a cheesy self-help book, or a motivational poster, but it is true. There are no magic fixes and no-one can do this for us.
Easier said than done of course. When you’re young and trying to survive on the school playground, appearing absolutely normal seems like the only way to survive. Anyone too short, too tall, too heavy, too thin, too smart, too anything, finds themselves the subject of teasing and mockery from their peers. But something bizarre happens as we transition from children to adults — a person’s individuality and character start to matter more than how far they can kick a ball.
Which brings me to now. I like my life now. I even like me. I’m a software developer (and reasonably efficient 7 finger typist), I have a beautiful wife, I travel the world and I ride motorbikes. I choose to focus on the things I can do rather than those I can’t do. From time to time I think about how my life would have turned out if I didn’t have hemiplegia. I can’t know what direction it would have gone, but I do know it wouldn’t be the life I have now. My hemiplegia has made me who I am.
