Today is Purple Day – a global day for epilepsy awareness.
Sat here in my tinpot little house, it’s hard to feel particularly connected to anything global, or that I can make much of a difference to help other people, but one of the things I decided on early after my diagnosis was that I wasn’t going to ever hide the fact that I have epilepsy, so it would be particularly negligent of me to not post today and at least add a few words on the subject to the global collective.
(Wow, that was a long sentence.)
Awareness of epilepsy in all its complicated, expansive and criss-crossing nature is not particularly great. I’m sure most people have heard of it, sure, but a lot fewer will have heard of much beyond the “flashing lights thing” that is a neat visual cue for television programmes which feature characters who have it. I’ve seen epilepsy on TV a number of times, and that part is usually what gets a mention. They fail to mention the many other types of seizure, or the fallout from having even one seizure, and (for the most part) focus instead on the shock factor of a character dropping to the ground and shaking a lot. I have seen some pretty good representations on the box (for example, a minor character on a medical drama who was in for observation, and great difficulty was had in triggering her seizures; it transpired they were stress-induced, which made for a change), but time and again, when I tell people I have epilepsy, I often end up having to explain that I am fine with flashing lights, television, and sitting in front of a computer screen. The epilepsy warnings that are (very wisely) shown before flash photography features on the news unfortunately don’t help here either, though they remain very important for the people who do have photosensitive epilepsy. It’s mostly when I consider the various types of epilepsy that I remember just how lucky I am, and how lightly my life is impacted by comparison. Here I am, moaning about not being able to drive, and about having to have someone in the room with me when O and M wash, and really, it could be so, so much worse.
I have never been incontinent due to a seizure, never fully lost consciousness due to one (well, possibly I have, but not suddenly), I have never been seriously injured, my memory is moderately okay (short-term not fantastic, but that could well be unrelated), I have no learning difficulties and medication controls most of my seizures as long as I don’t place myself in consistently stressful environments. I would go so far as to say that 90-95% of the time I am perfectly fine.
Maybe that’s why I am so frustrated. Epilepsy merely brushes my life, and it manages to have a huge knock-on effect, from employment to visiting family to my day to day life. When I then think about how other people have to manage, I get cross that for many people, the condition is completely off the radar. it was for me, too, until I got the diagnosis. Like most people, I’d heard of it, I knew that it involved seizures, and I’d read the epilepsy warnings in my computer game manuals, but other than that…so what? Now that I know more, I can’t believe how ignorant I used to be, and why more isn’t done to dispel the myths and misconceptions.
In this age of interconnectedness, when people are highly acclaimed for not very much, it seems a shame that all that awareness can’t somehow be shifted over to things which could change or save lives, or improve them at the least. When I was first diagnosed, a lot of my then colleagues were wary of me, and sceptical. One of the first aid-trained staff told me that a fellow co-worker had said they thought I was faking it. goodness only knows why they thought I would sabotage my job so effectively, but perhaps they wouldn’t have if the had known more about it. A lot of people I meet assume I’ve had it since birth, and are surprised when I say I was diagnosed at 19. That was a preconception I’d never even thought of, but it seems to be common, despite many types of epilepsy occurring later in life, either for reasons as yet medically unknown (as is the case with me) or due to head trauma or brain tumours.
After a lot of rambling, I realise that none of this little rant really does much to raise awareness. I wore purple today, and dressed M in a purple top too, but failed to really do much other than write a facebook status, tweet, and scrawl a post here. Is it enough? No. Is it better than nothing? I hope so. Will I do better next year? I certainly hope so. Watch this space. Or better yet, look here, and see what you can do to raise awareness too, this year and next. Because it is only when everyone gets involved that epilepsy will stop being that “flashing lights thing” which many people perceive it to be.