How does your disability affect you?
This is a question that I'm asked often whenever I need to fill out a form for something, after I've 'not-wanted-to-but-had-to' admit on the form that "yes I do have a disability". I wish I could fit the following answer into the box on each occasion.
In simple terms my right arm and hand doesn't act like it should. My right hand is almost permanently fixed in a closed ball like manner, because I don't have the necessary brain signals for me to tell my fingers to open up fully and relax. I can't wiggle my fingers or my toes on my right foot. I'm really limited to my use of my right hand. I do everything with my left. I dare say, you probably wouldn't even notice I had an issue with my arm if you met me, but I tend to spend a lot of my time trying to make it not noticeable. The name for this is right sided hemiplegia, a mild form of cerebral palsy.
OK, it is a bit of a shame that I'll never be an excellent pianist. I may have been, certainly, as musicality runs in the family. I'd love to be able to learn to play an instrument but it looks like I'm only restricted to the Harmonica or maybe the Kazoo.
I've never had the dexterity to complete two handed tasks. I did have weekly physiotherapy sessions when I was little, and as much as they may have helped, I can't help thinking back that I hated them. Giving a list of repetitive exercises to a boy of six, seven, eight is not good. Football was definitely my only enjoyable outlet, but that's another story.
Another thing is that I can't tie my shoelaces. At school I had elastic laces in my shoes, but they were curly and I didn't want to be the boy with the weird laces. There's always a stigma attached to not tying laces. When you were at school, you were considered stupid if you couldn't tie your shoes. I physically couldn't do them. Yet, I always felt embarrassed. Even to this day, I still feel silly having to ask someone to tie my laces. I suppose, even at the age I am now, that I've just got to accept that I'll never have the functionality to do them.
Yet, here's the thing that I cannot understand, even though I am the person most directly affected. If I think about relaxing my arm, quite the opposite happens. I tense up. The muscles in my arm tighten when I least want them to.
Think about a boxer fighting in the ring. Just before he goes to throw a punch he tenses and contracts the muscles in his whole arm. Now imagine that spasm, as an involuntary movement around a hundred times a day, including at bed time.
I don't have any control over this; the length of the spasm or when it will occur; all I know is that my next spell of arm-tightening is just around the corner. And I'm really not a fan of having my arm tense up randomly like this. I am used to the effect, but at times, it drives me completely crazy. This reaction kind of cramps my style a bit!
I tense more when I'm stressed or nervous. At my last interview for my current employer, I was so aware of my arm being tight. To myself I was saying to my right arm, "relax, relax", whilst answering the questions of the man opposite at the same time. It was multi-tasking at it's finest and I was so suprised I got the job! I wish I didn't have to do that though.
I do try and hide my disability, and unless you asked me to tie your own shoelaces(!) or you went to shake my hand, you wouldn't notice. Once, I sat on a train opposite a woman, who did happen to notice my arm and constantly kept staring at my hand. I could feel her eyes on me, and the more she looked, the more my hand went into a ball and tightened up. The whole experience of being scrutinised was horrid, and I nearly had a panic attack on the train. It happens in really busy places too. I hardly ever have my hands resting in my lap, because I'm just so self-aware.
I just thought I'd write this to see if there are others in a similar situation. How a function of the brain that is hidden and unseen can affect someone. Certainly, my disability has shaped who I am. Because of the reasons above I'm not one to draw attention to myself, and I suppose my quiet, happy nature is from not wishing to be the centre of attention.
I have been to various doctors and physiotherapists across the land throughout the years to see if there is a cure, or to see if I can get my hand and arm to be relaxed at all times. I have had botox injections to try and stop the spasm contractions, but they are only short term and they didn't really work. I am not going to try drugs like Baclofen, because I don't want to slow down the rest of my body. Is there anything else that I can do to stop unwanted and random contractions in arm muscles? Or, is there anything I can do to change the thought processes in my brain?
I know I shouldn't feel so embarrassed at not being able to tie my own shoelaces or self-conscious on packed trains, but I do. And that's my final point. Even though I'd publicly admit how my disability affects me physically; privately I'd admit that it probably affects me more mentally.
