The night of my first seizure, I was sixteen years old. I was taken to a hospital, scanned and poked. I trusted America’s healthcare system. I let a nursing student mangle the crease of my elbow and the top of my hand. Medical students from a nearby university came and peered into my room, whispering things like: “This is her first seizure, and she’s past puberty?” “Huh.” “It’s probably from brain damage.” Nods all-round.
Since my first, I have had several grand mal seizures– some on my own, one at a hockey game, one in a restaurant, one underwater. One time, I thought I was fictional for about an hour. During a seizure, the brain– your personhood– is scrambled, and it takes a while to piece things back together. The best way I can describe them, though I’ll never do the horror justice, is as overwhelmingly unpleasant time travel. I’ll be in one place and then will suddenly be in another; it’s not like falling asleep, because “coming-to” doesn’t feel like waking up. It’s like someone takes my life, slices out a bit, then tapes the ends back together– as if they were editing a movie reel.
Treatments for epilepsy aren’t nearly as harsh as they used to be. In the seventies, we were given tranquilizers, straightjackets, lobotomies. There are still invasive surgeries and a lot of helmets, but I just take drugs: lamotrigine and formerly, divalproex. Granted, they have appalling side-effects, but they’re nothing I can’t cope with. Tremors, double vision, hair loss, weight gain– these can all be overcome.
What I cannot stand is writing through them. There are quite a few epileptic writers– disabled writers. I don’t like saying that– using the d-word– but when it comes to writing, we are disabled. Even though writing is a marrow-deep love, for most of us, not dying takes precedence. So we swathe our brains in chemicals that slow down the process; we make our writing lives harder by keeping ourselves safe. Making that decision is heartbreaking, and the resulting separation from our creative selves is agonizing. The lucky ones are spurred into artificial mania by their drugs, and the unlucky ones suffer weight gain, depression, and dissociation.
For the last five years, I felt nothing. Well, that’s not quite true– I visited a library older than my country in 2011, and I was excited about that. I remember being so startled that I was feeling something other than just “ok,” that I started to cry. Otherwise, I haven’t even been content, just there. I’m sure I don’t need to stress how important access to the spectrum of human emotion is for creative expression. I could write nothing, not even music. My academic work suffered. For solid arguments, airtight theses, one needs to be able to follow logical thought processes and to stay awake. I could do neither.
I developed workarounds. I would sit, daily, at my computer. I would pack a bag, walk up to my favorite coffee shop, and stare at the smudged screen for hours. Often, I wasn’t writing anything in particular; most of my work from those years is word salad. However, the routine was helpful, because sometimes my brain made the connections, occasionally it spun out arguments, intermittently it behaved. I lived for those moments.
I also read, a lot. I thought that since I wasn’t creating anything of value, I’d take the years on divalproex and make them my “foundation-building” time. I studied the masters, like a fine art student. I wrote for little publications– interviews, reviews, anything that didn’t require too much original thought. I was determined not to waste the time. I joined clubs, went on trips, even went to church– I figured that since I wasn’t writing, I had to gather as much life experience as possible. You know, for when I could write.
I tried to have faith that the best part of me would return.
I still do all this, even though I’m not at Boston University anymore, nor am I on divalproex. I take lamotrigine now, which comes with a very nasty side effect: death by anaphylactic shock. But it also provides bursts of energy that rival anything caffeinated. Some patients report it inducing creative mania, and I am one of those patients. As I was weaned off of divalproex and my lamotrigine level climbed, I started to compulsively write. I obsessed over little things, facts: the discovery of the newest prime number, the evolutionary trajectory of albino, eyeless cave fish, the Presumpscot formation– a clay deposit in New England, Coleridge’s opium habit, the adorable babbling of newborn humpback whales…
I can’t stop, but at least the hope I had proved worthwhile.
My workarounds now include tricks to get myself to sleep at night: boxing training, a brown noise machine, rereading Nabokov’s memoir (though beautiful, one must admit it’s a slog), recounting, to myself, memorable conversations. I’m finding that these are also helping me create. The quieting of my brain allows it to work. There are studies that prove that the brain whittles away at problems while it’s relaxing, which is why sleep is so important. So, sleep.
Many epileptics’ triggers include sleep deprivation– mine certainly does. For us, getting only 2 hours of sleep can be fatal; we’re an extremely well-rested population. But it makes you wonder: if someone with weaker brain chemistry can expire simply because they didn’t get to bed on time, what does deprivation do to a completely healthy brain? I’d wager it contributes nothing beneficial.
Protect your health. You will miss it when it’s gone.
A disabled writer is a hard-working one. Not because we write more, or because we’re better at anything in particular– in fact, we’re bound to be worse. No, it’s just because we have to try harder to produce anything at all. There’s also a determination that comes with a diagnosis, too, an urge to prove the voice that whispers “you’ll never be more than sick,” wrong.
And maybe someday I will.