My life with epilepsy

Yesterday was International Epilepsy Awareness Day. As an epileptic, I'm often asked, "What's it like to have a seizure?" I honestly can't answer that question. I can tell you how confusing it is to come out of one and about the time gaps I experience before having a seizure. I can explain how a seizure is the equivalent of my body running a marathon without my brain being present, and how I'm physically exhausted for solidly twenty-four hours afterward. But I think a more interesting question than, "What's it like to have a seizure?" is perhaps, "How has epilepsy affected your life?" Because the answer is: in some ways hugely... and in others not at all.

Every epileptic's story is different, but mine is a little more unusual than most. It's fairly common for epileptics with severe seizure activity to have brain surgery. It's pretty rare for people to need lung surgery as a result of a seizure. The number I was quoted was one in a million - though I'm guessing that's an estimate.

I was first diagnosed with epilepsy when I was 13, but I've had it all my life. I have what is known as juveline myoclonic epilepsy, or JME. It's a type of epilepsy that becomes more evident in adolescence as symptoms become more prominent. In my case, I went from being an absurdly daydreamy child to an awkward and clumsy adolescnet. You might think lots of kids are like that, but in my case, the daydreaminess was me having absence seizures, and the clumsiness was me having myoclonic seizures. Someone finally realized I wasn't just daydreaming when I was cast as the lead in a school play. I was taken out of the role during rehearsals when I would stop short in the middle of lines, pause briefly, and then claim to have lost my place. In fact, I'd was having absence seizures.

JME isn't just the daydreaming seizures or the myoclonic jerks. For me, it's also grand mal seizures. I had my first grand mal seizure in ninth grade, on Halloween Day. I can remember the moments before quite vividly and nothing for hours after. Sometimes that's how seizures are. They are breaks in your personal space-time continuum.

The lung surgery came my senior year in college. I had a seizure in late January and aspirated - brought saliva into my lungs. When you're conscious, you cough in order to prevent yourself from doing this, because saliva - while it's fine in your mouth and fine in your stomach is actually really terrible in your lungs. And in my case it ate a hole in my right lung, causing me to have part of my lung removed. I spent about six weeks in the hospital, didn't graduate from college at that time, and my life got derailed.

That's the thing about a seizure. It can come at any time and derail your day, and its effects can derail your life. So it's always been up to me to handle my disease as best I can. When I was first diagnosed, my theatre teacher told me that epileptics didn't belong in the theatre except in the audience. And I had to live with that in high school, because she was the only person who taught theatre or music at my high school. But being on stage has been a passion for me for as long as I can remember, and as soon as I got to college, I started doing as much theatre of as many different sorts as I could. Eventually I found my niche in improv. With some epilepsy meds, I've had difficulty "finding" words. That makes it tough to do scripted theatre at times. But with improv, you're making it up as you go along, and if you lose a word, you have a scene partner to support you and find the next word for you. They're making it up too, and it's their job to make the scene work and help you look good. It's all about supporting each other. So it's perfect.

There have been times in my life when my epilepsy has been very bad - my college years in particular - but the reality is that I've been lucky. Through combination drug therapy, I've gotten down to about one grand mal seizure a year. And my other seizures are generally not noticed by anyone but me unless they come in clusters. The worst part of the epilepsy has, in some ways, been side effects from medications. When I first went on meds for grand mal seizures at age 14, I gained 60 pounds. I didn't lose that weight until last year - at age 36.

The other difficulty has been how people treat me and is, in many ways, what a day like Epilepsy Awareness Day is striving to correct. Revealing that I have epilepsy can be a difficult thing to do, because I don't know how people will react. The best thing I can hope for is that people will be supportive and calm. Oddly, the most common reaction I get is, "Oh, my dog has epilepsy!" and even after hearing it so many times, I'm not sure how to respond. Lots of dogs twitch, especially while they sleep - and that's a great way to reference what a myoclonic jerk looks like - but I would still rather have people ask me questions about what to do if I should have a seizure or how they could be supportive. The theme of epilepsy awareness is "talk about it" and that's always been my credo as well - that I was better off if people had more knowledge than less, and so I'm happy to share.

Talking about it really does help. Three million Americans have epilepsy, but I didn't know anybody else when I was diagnosed. I had nobody to relate to about my illness. To this day, I've never met anyone with JME, despite the fact that it's one of the most common forms of epilepsy. There used to be more of a stigma about epilepsy; it simply wasn't talked about. So the whole idea behind epilepsy awareness - as a movement, as a day - is to make people feel more free about talking about it. To get rid of that stigma. Because it makes things much easier.