I haven’t posted for a while. I had an amazing holiday with pretty okish days. It’s rare that I only get a few bad hours in a week so must be paying for them now with one bad day after another (and lots of missed races).
I’ve spoken to a few people recently who also suffer day to day from illness. They think I’m brave (am not, just a drama queen) because they keep what they’re going through from the world. I didn’t feel very brave last night though when was glad it was dark so that people couldn’t see me running strange. My arms wouldn’t move and I had to push through every step (whilst making stupid noises that I can’t control). I had to have James and the dog with me to keep mustering back to just to make sure I was OK and it was probably one of my most difficult miles but I still felt ashamed that people would see me (I think subconsciously that might be part of the reason I usually lock myself away in the track).
It’s stupid though, if it was anyone else I’d tell them not to give a flying duck what other people think. It’s hard to remember that though when you see the looks of fear/confusion/sympathy from people who look at you (I’ve learnt that most people don’t even notice you but the ones that do stay in your head so it gets magnified out of portpotion). I hate those looks, they remind me I’m no longer ‘normal’ but normal is just a creation of social norms and stereotypes. We created normal so we can adapt that to whatever you want it to be. The only way to do it though is stop running in the dark. The more people see movement disorders the less ignorant the are and eventually they’ll become desensitised to people shaking or going “do do do”. There’s no longer invisible disabled if you get people to see.
Here’s my first effort to combat normal. I hate photos of me, especially when I’m not well, so baby steps. Today you get my right arm. It got stuck for about 50 minutes today. First behind my back (which is probably good for posture) and then in a position I’ve named the One Arm Robot. You can allow your other arm to join in for fun if you wish. When I feel braver I might share videos of what episodes look like. You don’t have to watch them but you’ll help redefine normal if you do.
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