Friday, August 5, 2016

Catching epilepsy.

Back in 2002, I was riding home from an Eddie Izzard show in D.C. with two friends. (The Sexie tour -- got to meet Eddie afterwards and everything. He signed my Circle DVD.) I'd not slept much the night before and it was late, so I decided to take a nap on the 3-hour drive home. Rather than sitting up with my seat belt on and sleeping sitting up, I lay down across the back seat. It was raining.

I was woken up by the sound of an explosion and my friends shouting. One of the tires had blown, and on the wet roads we inevitably spun out. Since I was lying down in the back seat, I ended up smacking my head against the inside of the back door five times -- well, three times, and then I threw my arms up over my head and ended up hitting my arms and my head against the door the last two times. The driver did all she could (and likely more than I could have) under the circumstances.

The rest is a bit of a blur 'til the next morning. I know I got out of the car and said I was okay before falling over into a ditch. I know one of my friends sat with me in a stranger's car while we waited for an ambulance. I know my friends came to the hospital with me while I was observed overnight. I vaguely remember hearing that I got a concussion but there would be no long-term side effects. I can't remember how I got back to campus, but I didn't go to class that day (unsurprisingly).

The nurses weren't exactly right about no long-term effects. Several months later, I blanked out at a convention and came to under a table with a friend hugging me. This happened several more times in several more situations. Finally I went to a neurologist, who informed me that the concussion had left me with epilepsy and I was having complex partial seizures. I was put on medication and encouraged to switch jobs.

In the years since then, I've been able to get my seizures under control, largely because the other conditions affection me -- endometriosis and severe anxiety -- were lowering my seizure threshold. Sadly, I'm still prevented from some activities. Flashing lights are a danger, as are 3D movies in anything more immersive than a friend's house. Haunted houses and concerts that employ strobes and fancy lighting effects are potentially a danger, so unless I have a friend who can keep an eye on me during those times while I close my eyes, my best bet is to stay away. I have been told there is a chance that the damage to my brain will heal as I get older, but there's no guarantee.

What I never accounted for was the damage done to my life independent of the actual seizures.

Two former friends of mine decided early on that my seizures were tantrums -- that me wandering off in silence at random was me being rude. When I explained that I was diagnosed with epilepsy and that what I was experiencing was a type of seizure, one of said former friends looked at me skeptically and scoffed, 'They don't look like any kind of seizure I've ever seen.'

And it's true, I suppose. Very few shows on television show anything other than grand mal seizures: the fall-down-shaking ones. To that end, people are convinced that that is the only kind of seizure that exists. In actuality, seizures can manifest in more than a dozen ways, from 'zoning out' to isolated muscle spasms to sudden loss of strength. To that end, many people (like myself) can have seizures without even realising that's what's happened to them. I went undiagnosed for a long time because my seizures weren't seizure-y enough, even for me.

Also unhelpful is the fact that 'epilepsy' and 'seizure' are quick go-to words to describe things unrelated to the condition. I recall my days working in an office when my manager was apparently walking down the hall with a bouncy ball that flashed in a few different colours on impact. My office-mate at the time shouted, 'Don't bring that in here! I'll catch epilepsy!'

Said like that, it sounds ridiculous. But think back to the last few reviews you read for special-effects-heavy movies or colourful children's shows. How many times have you seen 'seizure-inducing' used casually as a criticism of visuals? How many times have you seen 'epilepsy' invoked in these situations? I come across these in my reading and it's disheartening, largely because whether or not something is seizure-inducing is a genuine health concern for me and thousands of other people.

I tried to think of a comparison earlier but realised I couldn't. I've seen people occasionally say something was so bad it gave them cancer. While that strikes me as a little much, I also recognise that people understand that they will not go into a movie theatre and contract a deadly disease from a bad movie. Not so much with the seizure claims.

The sad part is, I've heard the 'epilepsy' and 'seizure' comparisons in my own circles of friends. I don't much speak up because I don't want to be accused of being oversensitive -- especially considering I've made epilepsy jokes myself as a coping mechanism. (I once used a picture of a Porygon as my forum icon just to confuse people, and that's the lightest of them.) But I realised it's less a matter of 'How dare you mock something I deal with daily' and more a matter of 'The more you use these as throwaway terms, the harder it will stay for me to get help and treatment.'

Because there are days when it feels like the disease that has occasionally literally left me helpless on the floor is just a handy derogatory joke people can throw at, like, Speed Racer or pop concerts. It's disheartening. Not 'offensive' (at least not to me) so much as just shaming. The thing I endure, the thing that has on many occasions landed me in the hospital, has been relegated to an insulting descriptor for a flashy movie.

I think about this now because last weekend I had to leave Star Trek Beyond half an hour in, since I ended up at an IMAX 3D showing and sort of willfully (stupidly) decided to see if I could make it through because I wanted very much to be like the Normal People who had invited me. I learned my lesson very quickly.

Really, I wish it was a joke. I wish it was something I could laugh at and shame into a corner. Not something that's caused me to knock my head against a bathroom sink as I fell. Not something that turned going to see my favourite band perform into a production number and potential medical emergency. Not something that puts a hard time-limit (or occasionally even full stop) on something as basic as playing video games or seeing sci-fi movies.

I wish I could see it as casually and as harmlessly as the rest of the world does. But I live it. And the more it's thrown around as a laugh, the more ridiculous I feel at the same time.