A Reluctant Role Model for a Taboo Disorder

Hippocrates wrote about it. Julius Caesar, Dostoevsky and Van Gogh had it. And yet no one seems to know how to deal with epilepsy, a condition that affects an estimated 2 million Americans.

I have epilepsy. I have the form of seizures most people associate with epilepsy--the convulsive jerking and shaking commonly called grand mal seizures.

My seizures are rare and each lasts less than five minutes. Five minutes of lost consciousness every two years or so--that’s not so bad. Yet because so few epileptics are vocal activists, I worry about the impressions I create. I worry that my human foibles and flaws do a disservice to other epileptics.

A seizure is ugly to watch. While employed at a health food store a few years ago, I had a seizure at work. I was mortified. It was humiliating to see the looks in my co-workers eyes: They were scared of me, scared of my lack of control.

Seizures result from misfiring electrical signals in the brain. They are not a sign of insanity or a lack of self-control. Brain injury and childhood fevers or disease can cause epilepsy, but I don’t know the reason for mine. Many outgrow it in their teens. Epilepsy exhibits itself in different ways. Some people’s seizures take the form of brief staring spells or repetitive gestures like lip-smacking. There is no single way of identifying a person with epilepsy.

I reapplied at the health food store recently--more qualified than I was the first time around. During the interview, I was honest about my epilepsy. I didn’t say I was cured. There is no “cure” for epilepsy, short of brain surgery. I only said that it was under control. I told the manager, who had witnessed my seizure two years ago, that I could make no guarantees.

“Don’t hold your breath” waiting for a call back, he said. I didn’t. There was none. I didn’t sue, I didn’t say a word. Like it or not, I’m a role model. My seizure scared that manager. I felt smothered in guilt, wondering how he would treat a future applicant with epilepsy.

I can avert having a seizure, but the price I pay is heavy. An “aura” is the clinical term for the sensations that warn me of an impending seizure. My mouth tastes as if I had eaten a penny. My hands tingle. Often, I get a headache. I can avert a seizure if I sleep through an aura. That makes it difficult for me to build up a life ruled by appointment books and minute-by-minute schedules. The auras don’t always result in seizures. I have to make some hard choices: Should I miss a final because of this feeling? Should I skip Thanksgiving, a camping trip, a deadline?

For a long time, I’ve been afraid to build a complex life for myself. I thought that if I stacked up the cards of a job, family, college and heavy social obligations, one seizure would topple it all. I realize now, at age 25, that honesty about my limitations is the key. A mother is limited by a child. A student is limited by finances. I’m not the only one with curbs on my life.

I cannot speak for anyone else with epilepsy. The forms are myriad, the levels of control all different. My experience is all I know, because so few have spoken up. Yet because it is so misunderstood, I feel pressured to excel in all I do. If I’m the first person with epilepsy an employer or professor meets, I don’t want to create a bad impression. At times, it’s easier not to try, rather than to try and fail, because I fear others might assign my human faults to this medical condition. I am not a saint. To those who have spoken out, speak louder. And among the 2 million who haven’t, there must be someone more high profile than I am.

Epilepsy has added two dimensions to my life: seizure control and the role of reluctant paradigm. I don’t mind having the disease. I only mind the deafening silence of 2 million Americans.