I found out about this too late to include it in my World CP Day post yesterday, but I couldn’t let it go unmentioned.
Last month I scored this video for Hemi Help, the Hemiplegia charity I wrote “>the parenting article for. It’s a short awareness film featuring Al Murray and several people with Hemiplegia. It aims to educate on the issue of ‘hidden’ symptoms; an issue I feel is as important as it is misunderstood.
I have many ‘hidden’ symptoms. My short term memory is… creaky. I get horribly distracted. I randomly lose my balance, even if I’m sitting. I have very poor spacial awareness or sense of direction. I suffer with that terrible ‘brain fog’ that is discussed in the film. Probably worst of all, I have debilitating fatigue. There are many hidden symptoms of hemiplegia and hemiplegic CP, those are just some of mine.
One of the worst aspects of hidden symptoms is the resultant ableism that can come as a result. It’s usually unintentional, but even people close to me say and do things that are ridiculous and offensive to me. I have to do my best to keep a rational head in these circumstances. People aren’t meaning to be nasty, I know. When you can’t do something as supposedly simple as remember where a certain shop is or whatever, most people find that impossible to process. I dread being asked directions; people think I must be stupid if I can’t explain where something is. I really can’t. That bit of brain just isn’t there.
Of course, the problem is about the nature of visible symptoms. Everyone can see my hemiplegia; I guess people presume that’s all there is to, the visible signs. Nobody expects me to run anywhere, but if someone notices that I can’t read a map, they’re gobsmacked. The connection to my condition is never made; it’s just greeted with “D’uh!” type responses.
That’s just my version of events, and I’m not alone. That’s why I think this message is so important.
Oh, yeah; the music. I scored two themes for this, one piano, one full band. The sound quality isn’t the best, due to the video diary nature of the production, but the message is one I’m very passionate about. The second theme, the piano piece, will mostly likely be released in full very soon.
Here’s the video. You can also get involved via the Hemi-Help Thunderclap. And of course, hopefully you’ll learn something about what is often a strange and poorly understood condition… 🙂