Health

What It's Like to Live with Epilepsy

Once, I sat down on the floor of an art gallery, took off my shoes, and emptied out the entire contents of my bag. I had no recollection of it happening.
November 7, 2016, 8:15pm

I have epilepsy. That's something I wouldn't have felt comfortable admitting ten years ago. I guess I thought I could grow out of it—like some children do. But now I just see it as a conversation topic; I'll say something casually like, "I can't drive." "Why?" the other person will say, "Just can't be bothered?" "No," I'll say. "I have epilepsy." Suddenly I'm really interesting. "How often does… it happen?" It means a fit. And that's what people think epilepsy is all about. I prefer to say seizure rather than fit—it sounds less medieval. I tell them that I don't have seizures very often and that they are well controlled with meds. Knowing that the girl they've just met at a party isn't going to make things weird by having it on the floor usually reassures them.

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Epilepsy doesn't just manifest itself in seizures. There's also what is known as a complex partial seizure, which is when you appear conscious but are actually completely unconscious of what you're doing. Once, I sat down on the floor of the Museum of Modern Art in Dublin, took off my shoes, and emptied out the entire contents of my bag. My then boyfriend was filming the exhibition at the time so caught the whole thing on camera.

I had no recollection of it happening.

There are times when it is really awkward. Earlier this year, I was working as an ESL teacher. I'd previously been teaching in Spain and Vietnam, and this was my first job back in the UK. One day in class, teaching a group of students in their 20s, I took off my shoes and unbuttoned the top two buttons of my shirt. Luckily I was wearing a vest underneath. After the lesson, I went into the staff room and announced that I couldn't find my shoes. A colleague took me back up to the room I was teaching in, and we found them.

My pen hovers over the box marked 'yes' on a questionnaire in which I'm asked: Are you disabled?

We all empty our bags, take off our shoes, or unbutton our shirts most days without thinking about it—but most people do this in places that are appropriate and when it's necessary. This ability to perform simple tasks without being fully conscious is, on one level, fascinating. But when it's happening to you, it's scary.

My partial complex seizures—or "absences," as I call them—have increased recently, which is in direct correlation with a difficult period in my life. I lost my job—I wasn't enjoying teaching, and it showed. It's a relief not to be teaching any longer. But now I have no money and spend way too much time alone in my apartment.

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My sister came around recently. Apparently I suddenly panicked and started asking where everyone had gone. She tried to reassure me—she told me it had always been just the two of us in the apartment. But I was unperturbed and started counting the coats hung up in my hall, "This is mine, and this is mine," I said, to no one.

She tried to calm me down by pointing to a picture that I'd drawn in an art class I'd been in that evening. "Is that yours?" she asked. "I've never seen it before in my life," I told her. When my sister retells me this story, she can't understand how I don't worry that I'm going mad. Counting coats and imagining people in my apartment could be seen as madness, but it could also be a quite rational symptom of a brain that is too clogged up by other thoughts to simply say, "I feel lonely today."

Most people like to feel as though they're in control of their actions. Knowing that I have the capacity to not be in control has had a negative impact on relationships and careers, stopping me from trusting myself and others.

I have juvenile myoclonic epilepsy, which means I didn't have a generalized seizure—when electrical energy sweeps through your brain and causes convulsions—until I was 16. Before that, I'd had one absence. I went to college and assumed I was safe—it hadn't affected me for ages. Then just before my second year, during a stressful last-minute house hunt, I had two generalized seizures in one weekend. It all happened in front of my new college friends, who I barely knew at the time. It really affected my confidence; I was so embarrassed—I was convinced everyone thought I was mad.

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I started smoking weed a lot, which didn't help with my paranoia. I also went on an anti-epileptic called Tegretol Retard, which was designed for people who are prone to seizures every day. It made me sedated. Now I'm on Levetiracetam, which is specifically designed for my type of epilepsy. I have been seizure free for a year now. I shouldn't drink or take drugs, but sometimes I cave, even though I know it's irresponsible.

I struggle with the identity of being epileptic. My pen still hovers over the box marked "yes" on a questionnaire in which I'm asked: Are you disabled? Partly because it's a hidden disability, but also what kind of disability is it? It seems to occupy this weird middle ground between mental and physical impairment.

Mental health and epilepsy are interlinked—I can get intense feelings of fear or panic. Once I was sitting on the bus on the way to a job I'd been doing for a month when I was suddenly struck with an intense fear. I rang my sister and asked, "Do you know why I am on this bus to Northenden?" I couldn't remember. A little nugget of panic spread to my whole brain. "You work there," she said. "Maybe you should get off the bus and have a sit down."

Having a condition that makes me do odd, inappropriate things creates a distance between me and so-called normal people. But the older I get, the less I care what people think. My epilepsy is not going to go away. Accepting that and seeing it as part of who I am makes me feel less ashamed. It's taken me a long time to view it in sober, practical terms as a condition that affects me but doesn't define me.

Illustration by Marta Parszeniew