Gotham Girl Interrupted by Alisa Kennedy Jones

Author:Alisa Kennedy Jones
Language: eng
Format: epub
Publisher: Charlesbridge
Published: 2018-11-05T16:00:00+00:00

10

Dostoyevsky’s Addiction

THE GALA INVITE READ “Love life. Hate epilepsy.”

The cause was completely worthy—to fund advanced research to cure epilepsy, but the slogan didn’t sit right with me. It felt like an alt-right extremist rally against the condition. I couldn’t help thinking that I don’t want to hate epilepsy. Hate is too exhausting. If anything, I want to get along with it so that it stopped being such a bastard. That was the whole point, wasn’t it? Maybe I wasn’t being hopeful enough.

Dostoyevsky loved his seizures.

Leave it to the Russians to make seizures into something fabulous, to elevate them to an art form and a cathartic experience. This is a country where potatoes become vodka, beets become borscht, and Siberia becomes a vacation destination.

Dostoyevsky’s seizures always began with a bestial howl. There, in his drawing room, the writer would sit on the sofa talking with his sister-in-law. He might be in high, animated spirits chattering away when suddenly he’d go completely pale, lurch forward, and begin to fall. His wife would rush to his aid and notice a frightening change in his expression; suddenly there would be a fearful cry, a cry that had nothing human about it—and then he would fall into a grand mal seizure.

I’m probably not the first person to say this, but the epilepsy narrative can be very dark. There are way too many tales of woe. People need support for something so chronic, pervasive, and long term. Epilepsy is so much more than a seizure or fit. It steals moments, memories, whole childhoods, relationships, homes, job opportunities, and value from whole communities in that talented people find themselves housebound or unable to work or even stay out of the hospital. It’s a shadow that follows without ceasing. It’s the fear of being found out at work, of forgetting your medication, of becoming a shut-in. It’s waking up to judgmental strangers. It’s being written off as a drunk or a junkie. It’s worried phone calls after midnight because you didn’t check in, even though you are forty-three years old.

I thought of a woman I’d seen outside my office, wrapped in a foil blanket—the kind they give you in the ER when you’re in shock or being rescued from Mount Everest. It had just started to snow and her cardboard sign said, “Just out of hospital. I have severe seizures. Please help. Very cold.” She had shoes but no socks. She was in her early thirties and didn’t appear homeless or like she was on drugs. Was this how her story ended?

From demonic possession to witchery to sexual deviancy—epilepsy brings some daring and destructive mythology with it. From being viewed as a genetic defective, someone who should never marry or have children, to being bullied, to horrifying stories of Nazis euthanizing or experimenting on epileptics during World War II, to stories of insti-tutio-naliz-ation in epileptic colonies, and to a beyond terrible narrative of a young woman being filmed by her partner while having a seizure during an intimate

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