Over the weekend, I attended my first meeting of the local ataxia group. I’ve always avoided these groups like the plague until now because my own experience, and talking to other people, has taught me that ‘support’ groups are anything but – often just a handful of people sitting around feeling sorry for themselves and using their disabilities as an excuse not to actually do anything. I kept saying that if was like that, I’d figure out how to walk and do one as that is not something I have the slightest interest in. Truthfully, I spend enough time at home feeling guilty about things I can’t do that I wish I could.
The first thing I did was tell people the name of my condition and as much as I know (not much) about it. The usual wall of blank looks, confusion and ‘huh’s confronted me. No one had ever heard of it because it is so rare; in fact, it’s hilarious when you go see a doctor who claims to have seen it all and just the words ataxia oculomotor apraxia type 2 sends them crying into their unhelpful medical textbooks. Look, I’m just special, alright? Once that little story was over I found out that they actually do things and have plans. As I said, I’m not one for sitting around moaning about how crap life is – I want to be part of something.
The group facilitator told me about their plans for some summer activities which I’m looking forward to getting involved in. Apparently I inspired the team name for the summer fun run which was interesting since most of my conscious thoughts are wildly inappropriate. There was a kid there so I couldn’t go full-on Wendy…. but I don’t think I’ll be soon forgotten. Whether their plans turn out okay remains to be seen but, from what I hear, it is one of the most active groups in the West Midlands. The people seem friendly and nice so that’s a bonus.
Ataxia is more common than people think but few people know what it is. Until I was diagnosed with it, I didn’t know anything about it either. Like all conditions, everyone should at least know the name and how badly it can affect some people and that won’t happen without awareness. There can be all the information in the world on the interwebs or in medical journals but unless people know the word ataxa they won’t know to look it up. Equally, unless a person is affected by the condition, they won’t even click on a link to an ataxia site without believing it’s important.