There is no greater feeling of helplessness than the moment just before a seizure happens—the panic-drenched awareness that something is very, very wrong, that something got lodged in the cogs and shutdown is inevitable.
Adrenaline surges, but paralysis ensues.
I have no idea what happens after that.
I’ve heard the accounts from witnesses, but I have no memory of the events they describe: Taking off my pants at work. Wrapping myself in Christmas lights. Trying to climb a banister.
Several years ago, my husband started filming my seizures at the request of my doctor—the medications I’d been prescribed had changed my seizures, but they were not strong enough to entirely stop them. Instead of tonic-clonic convulsions on the floor, I was told that I remained semi-conscious during the episodes, stuck somewhere between lucidity and trance.
Since then, we’ve found a better combination of medication and lifestyle change, and the seizures are less debilitating. They still come, but I stay fully conscious. But when I found one of these videos on my computer when I was purging files to clear up disk space, I couldn’t help myself—I watched it.
SETTING: A kitchen.
[WOMAN is hollow-eyed, marching in place, twiddling her fingertips.]
WOMAN: Mermaids at the end of the driveway. Put the cake into Kevin’s mouth. Chicken head. Garlic cloves in pantyhose.
HUSBAND [patient, compassionate]: What are you doing?
[WOMAN is aware enough to answer him honestly, but not enough to stop marching, twiddling, mumbling.]
WOMAN [Indignant, as though the question is a stupid one]: I’m having a seizure.
When it was finished, I started to sob.
It was at once too real and surreal, watching someone who was both me and not me at all.
My tears were complicated, flowing from separate spigots of emotion:
Humiliation and grief and anger and sadness. I felt caught in the act, like I was watching incriminating surveillance footage of a crime I had no memory of committing.
Yet even as I watched this film noir, I felt such relief.
I know I’m lucky to be in a position to reflect on this.
It means that I’m not in that place anymore. I have a tenuous grasp on my consciousness, and I’m aware of how precious it is. The current cocktail of medications is doing its job. I still have seizures, but they are minor. I am not as far gone as I once was.
It’s such a small thing, consciousness.
Until it is absolutely everything.
Kirstyn Wegner lives in rural Minnesota with her husband, daughter, a bunch of cats, and a revolving cast of foster children. She taught high school English for seven years before an epilepsy diagnosis forced her out of it.
She works at an antique store, directs plays and musicals, and blogs at www.thefrustratedepileptic.com. Her work has appeared on Scary Mommy, Motherwell, The Mighty, and Her View from Home. Visit her on Facebook at https://www.facebook.com/thefrustratedepileptic.