I see an ad on Facebook occasionally from the Epilepsy Foundation of Minnesota and onein26.org. A few days ago, someone left a comment there lamenting the fact that if someone has cancer, heart problems or diabetes, people want to help out. When they hear “epilepsy” or “seizures”, it’s “RUN FOR THE HILLS!” (Okay, maybe not that bad, but it’s certainly not the same level of empathy.)
I can understand why, really. Epilepsy and seizures are kinda scary. You can be having a conversation with someone, then suddenly, they collapse onto the floor, flopping around like a fish and knocking lamps off the tables. And a lot of times, that’s the only thing they know when they hear “seizure”. Not many people realize that there are over forty kinds of seizures and they only know about one of ’em.
What’s more, there’s nothing concrete about it. You can’t just point your finger at something and say, “That’s epilepsy, here’s how to fix it.” If someone has cancer, “There’s the tumor, time for chemo and radiation.” Heart disease? “There’s the blockage, time for bypass surgery.” Diabetes? “Good God, man, start drinking coffee with your sugar!” And then there’s epilepsy.
About 60% of the time, doctors can’t find a cause. It just happens. Everything is fine, then you have a seizure. And more than half the time, you also have a lot of unanswerable questions. I’ve had a handful of MRIs done on my head and my brain looks quite healthy, thank you very much. We don’t know why my left temporal lobe sometimes acts like an 8-year-old after stealing his father’s coffee mug filled with sugar, but it does.
Look at it this way: with all of the gajillions of neurons in the brain, it’s like a network of all of the computers in the United States. Everything runs smoothly, all of the computers function as a single unit to perform all of the necessary functions and it doesn’t matter that 2/3 of them are constantly surfing for porn on the Internet.
And then one day, when everything is running smoothly, there’s one bad batch of code in New Jersey. Just a few ones and zeros in the wrong order and there’s an instant chain reaction that shoots through the entire network and all of those smoothly-running computers are now stuck on the blue screen of death for thirty seconds. And then it stops, the computers all reboot and everything is running smoothly again.
Obviously, this isn’t how all seizures happen or how much of the brain they affect. Sometimes it’s a nation-wide disaster scenario. Sometimes it makes the monitor screens in a small neighborhood flutter for a few seconds. Sometimes it’s a massive blackout across the entire state of New Jersey. All because of one bad batch of code that repeats itself from time to time… but no one knows when it’ll happen or how often.
How do you treat epilepsy? It might go away on its own, but a lot of people take medication. Types and quantities vary, side effects vary and success rates vary as well. I think I’ve been on… eight different meds at different times. There were two that kept me seizure-free for almost fifteen years, but since then? Time to get out the dartboard, throw a dart and see which medication I start next!
Or some people have brain surgery. If you think open heart surgery or removing tumors is scary, imagine extracting the entire state of New Jersey from your head. How does that affect someone’s personality? Aside from the existential question of “Am I still me if I have part of my mental capacity removed?”, you just lost a big chunk of the eastern coastline. (For the record, I know several people who’ve had brain surgery and they’re doing just fine. No mental or emotional scars, just the physical ones on their head from the incision.)
So there are a lot of unknowns about epilepsy. Who, what, where, when, how and why? We know the who and the what: one in 26 have epilepsy. There’s usually no where or when until after a seizure happens; how they happen or why? Not many answers there, either. And without answers, people think it’s scarier than things that kill a lot more people. Things like cancer, heart disease and diabetes.
But it doesn’t have to be scary. More research is constantly being done for different kinds of treatment: different medications, different surgeries, different implants (you may be able to keep New Jersey on your neural map). They can limit or prevent seizures altogether. They can help people function on a daily basis. They can allow those of us with epilepsy to live relatively normal lives. That’s the hope, anyway.
And I think that’s the point of Epilepsy Awareness Month. Talking about it, learning about it, realizing that it’s not as scary as you might think. Sure, sometimes people with epilepsy break lamps, but I was in a play when it happened. I was supposed to bump it with my arm when I ran past, then grab it before it fell… oops. (Thankfully, we had a backup lamp for the remainder of the shows.) So there can be lamp casualties, but that doesn’t change the fact that we’re not that scary.
We’re one in 26. We have epilepsy. And we’re pretty awesome people, too.
