A while ago, my mum asked me idly if I could get rid of any part of my disability what part would I pick. She was referring to my Cerebral Palsy which pretty much affects my entire body. At the time, I told her I probably wished I had better speech as I find it quite hard to join in with conversations with people and the way I talk gives the impression that I have learning disabilities. But as I’ve gotten older, I think I would like to change my answer. If I found a genie living in a magic lamp who was able to spirit away part of my medical condition I would tell him I was quite happy to live with all the obvious impairments I struggle with but would be eternally gratefully if he could zap to oblivion all the stuff that people don’t see right away; the problems and difficulties that from the outside seem like nothing but as I get older are becoming more of an issue for me.
I think that is one of the reasons people who aren’t disabled have such a difficult time relating to people who are. Because unless you actually have a specific condition, you have no idea of all the little hidden extras that go along with it that the person has to deal with just to keep going every day. I’ve been thinking about this a lot over the past couple of weeks because in that time I’ve found myself having to deal with a lot of the extra stuff that comes along with having my disability and quite frankly it’s been getting me down. It can feel like you signed on for having trouble with movement or speech and get geared up to cope with that and then another part of you starts to think ‘I’m bored with being left out of this whole disability thing, I want to have a go.’ I try not to let it get to me but there are times, like this week, when I think, do I really need something else? I thought I had everything sorted.
For example, I’m epileptic and, as Michael Caine says, not a lot of people know that. Not a lot of people know it because after spending most of my childhood trying out different meds, I finally found the one that works and, touch wood, haven’t had a fit for about 20 years. The problem is that these drugs also cause tunnel vision so this week, as I do every year, I had a three hour drive from my home to King’s College Hospital to check that I’m not going blind. What gets to me is that I know my eyesight isn’t effected by my CP because all through my childhood I had 20/20 vision. But to live my life semi-normally I have had to literally give up part of my sight so I don’t have a fit every couple of days. Don’t get me wrong, I’m not wandering round like Mr Magoo, I can still do everything I want to, it just makes me question the fairness of the universe when I am told I’ve lost 10% vision in one eye because of something that’s meant to help me.
Then there’s the side effects of the side effects, the fact that I have to deal with the whole test in the first place. The getting up at 6am to be on time for my appointment, the long journey that leaves me tired before I even have to concentrate on the test. The ability King’s have to lose my notes so the specialist doesn’t know whether he’s testing my eyes together or individually, not to mention that once I’ve had the main test the staff manage to forget both me and the poor guy next to me in the waiting room so we’re still sitting there when the afternoon paediatric clinic starts. This time I got an extra treat, something new that I wasn’t expecting, a glaucoma test, he didn’t even warn me. Just when I am thinking we’re on the home stretch, I hear the phrase, ‘Right, I’m just going to numb your eyeballs.’ Excuse me, I’m not at doctor but I do know that when you numb something it is to stop pain. I wondered what he was going to do. I did really want to be a helpful patient and I can only apologise to the poor Asian male nurse for the stink my body kicked up. I knew he was only doing his job, unfortunately my muscles didn’t.
Anyway, I’m sorted for the next 12 months but it just gets to me that I don’t feel like I signed up for this when it’s not directly related to my CP. I am getting better though. Slowly, as I grow older I am realising that like my walking and speech CP is going to give me these unexpected gifts and it does no good to get angry about them. Just have to hope next week will be better.