Written by Katelyn Brunner.
Epilepsy can mean a lot of things, but mostly it means that you have seizures. Unprovoked seizures, due to abnormal electric activity in the brain. It means that you probably have a stockpile of pills and band-aids in the bathroom. Epileptic, too, means a lot of things. Epileptics are comatose, they’re celebrities, they’re office workers, they’re teachers, they’re students, they’re dead. They’re people, with a dangerous variation. I am one of them.
I used to go to a support group where most of us had “generalized epilepsy.” Like epilepsy or epileptic, it can have various definitions so it meant almost nothing–all our seizures were very different. Though, when I started going to meetings, I was expecting a little more. More what, I wasn’t sure. Understanding? Information? Comfort? But the truth of it was that comfort was reserved for the kids who were “seizure-free” or who had “grown out of it.”
Mine are big. Dramatic. Capital-S Seizures.
The people who went to these meetings were adults. Some of us had adult-onset epilepsy, and there were others who’d had the disorder all their lives. They were much worse for wear. Chris had seizures, but they just made him get up and walk around his house. Pretty benign, until you consider the stairs that led down to his basement. He had a kiddie-fence and no kids. The golden highlights in Fantasia’s hair matched her ID bracelet. She saw auras and hated the hippie types that blather on about them. She said they were terrifying. Imagine your world suddenly discolored. Peggy didn’t have autism, but it seemed that way. Her seizures weren’t all that big, but there were a lot of them, and she’d been having them forever. She was twenty when I met her, and I was twenty, too. She loved me because I went to the college up the road, and because I have red hair. I loved her because she’s what I could’ve been: broken.
Mine are big. Dramatic. Capital-S Seizures. If you’ve watched House or Grey’s Anatomy, you can get a sense of what I’m talking about. When the subject is lying in bed, and things start to go wrong—equipment beeping and flashing, and then the spasms. Of course, on those shows there’s no spit or bitten cheeks or blood from where their bodies hit the table, so you’re not really getting the full effect.
There’s no way to describe the actual seizure, not really. But I usually go with this: they are the worst form of time travel. For the epileptic, it’s like nothing has interrupted the timeline. “Waking up” does not feel like waking up. There’s no ease, like there is after sleep. It’s one moment and then the next moment. It’s like someone has the tape to my life, sliced out a bit, and glued the ends back together. Reading in a chair to bruised on the floor, without mercy or warning. I always envied the epileptics who are able to prepare for them. Mercifully, I don’t seize often. If I did, I wouldn’t be able to do most of what I do, and what I do is already limited. My mom and my neurologist both say things like, “It’s not worth it if you’re not safe, honey,” but sometimes I don’t know if that’s entirely true.
I missed myself, and I missed how I used to feel. Passionate, I remembered. A “firecracker.”
When I was nineteen, I got the epileptic’s version of “the talk.” “So, are you sexually active? Because if you are, you’re going to need to start taking folic acid. You know, just in case you get pregnant. Just as a precaution. The pills you’re on right now, well, they’re not great for mothers. There are fetal abnormalities, miscarriages, and other deformities all associated with Depakote. You don’t want to hurt the baby. Just be careful. Oh, and did you know you can pass on your epilepsy, genetically?” That choice was easy. No kids. I would never put anyone in a position where there’s even the potential of contracting epilepsy, and at that point, I didn’t think I’d ever have any children. Despite all that, my inability to have a family hurts, a lot.
Those same pills also contributed to substantial weight gain and an emotional plateau. I was already insecure before the medication came into my life, but it destroyed more of my personhood. It’s a mood-stabilizer in addition to an anti-convulsant, but I didn’t need the stabilization. Most of my emotions were inaccessible, my confidence went, and so did my creativity. I gained nothing of value except safety. I missed myself, and I missed how I used to feel. Passionate, I remembered. A “firecracker.”
I shouldn’t feel like this disorder is my fault; I know that, but I hear myself apologizing for it. “I’m really sorry if this is inconvenient,” I said to a professor, once. “I’m sorry you have to deal with this,” to my friends. “I’m so sorry.” I say that, after every seizure, to my parents. I want to own it, but I’ve never been good at “owning” anything. Maybe one day I’ll feel like I’ve conquered epilepsy, but right now, I just want out.