Please Don’t Call Me Possessed

Illustration by Maddy Baird

How do you move forward after your own brain betrays you? And how is it that something can simultaneously build you up and break you down? Because there is nothing in this world that has made me more passionate, while also absolutely wrecking me, than epilepsy.

After having two seizures in fifth grade, I was diagnosed with juvenile myoclonic epilepsy. And at first, it didn’t really bother me. I was ten and unfortunately very naive, and had yet to understand just how much it would change me.

Fast forward a few years, and the feelings about being epileptic had caught up with me. But I couldn’t figure out how to talk about it, so I didn’t tell my new middle school friends I was epileptic, and I definitely didn’t share how I felt with my family.

It was at this time that the little things began to remind me that I was different from everyone else. When I was in middle school, I was forced to wear a MedicAlert bracelet. It was like being branded; one glance at my wrist and you would know there was something wrong with me. I distinctly remember a girl in my class, after seeing my bracelet, asking me what I was allergic to. I simply told her, “I’m not allergic to anything,” and then turned away. I was relieved that I didn’t have to say the dreaded words out loud, but indignance boiled within me from her assumption that only people with allergies wear MedicAlert tags.

That same year, I felt a similar indignance when a classmate – probably unknowingly – made an insensitive joke during a school dance. Music was blaring and lights were flashing and he yelled, “I’m gonna have a seizure!” He laughed. I, on the other hand, did not find it funny. In fact, I was ready to punch him in the face. I wanted to scream at him, “If you knew what having a seizure feels like, how the memories can undo a person, you would not be laughing.”

Despite all this, I didn’t cry over my diagnosis for seven years. I was still in denial about the emotional impacts epilepsy had on my life, and I didn’t deem it worthy of my tears. I also didn’t think that my situation was bad enough to cry over – in many ways, I was incredibly lucky. I had a great team of doctors and nurses, and my seizures were controlled quickly. But just because I was an ideal case, doesn’t mean that the experience hasn’t left me scarred.

Slowly, to the point where I cannot identify when it began, epilepsy creeped its way into my thoughts. Every time I get lightheaded, every time my muscles twitch, every time I haven’t slept enough, I am possessed by fear. Epilepsy infiltrates my everyday actions, making me crave the control that I lost for a few minutes many years ago. I have been forced to accept that I can’t do certain “normal” things – get drunk or high, jump into the pier when it’s dark, or even function without medication.

Sometimes, the memories play on a loop inside my head, the phantom feelings plaguing me every time my mind drifts. And on the days I feel particularly masochistic, I’ll play a game: which seizure was worse? The first one, where I’m conscious one moment, playing with my friends, and the next, I’m on the ground, lost and confused. Or the second one, where I’m all too aware of my mind detaching from the world, but utterly powerless to stop it? I have never been able to decide.

It wasn’t until I turned seventeen that I realized I was allowed to grieve for the girl I once was, and the one I would no longer get to be. I often wonder who I would have been if I hadn’t been epileptic, if I would be a different, better person. However unfair it might be, I like to blame being epileptic for all my problems. Tiring easily, my slow processing speed, my inability to be spontaneous, my pessimism. But then I question whether it is really the source of my issues, or rather “the easy way” to justify my flaws.

Recently, I have been reflecting on why I have such a hard time talking about my epilepsy. In fact, it doesn’t even need to be in relation to my own experience; just hearing the words “epilepsy” and “seizure” causes my body to tense. It’s possible that my discomfort stems from the stigma surrounding this disorder; a long time ago, before the physiological causes of epilepsy were understood, many people believed that individuals with epilepsy were possessed by demons or deserved divine punishment. They were deemed insane and forced into asylums. This, combined with the misconceptions about epilepsy still present today, has made many epileptics feel like they need to remain silent about their condition – myself included.

I can’t entirely blame the stigma, though. My avoidance of the topic has a lot to do with my own shame and fears. What will people think of me when they learn that I have epilepsy? Will this be what people remember me by? Will I become something fragile in their minds? Someone to pity? Or even worse, someone to be scared of? I don’t want any of that.

Nowadays, when I think about being epileptic, I’m not sure what to feel. As much as I dislike epilepsy and everything that comes with it, I often rely on it to feel special. Who would I be without epilepsy? What would make me interesting? What would make me different? Epilepsy has woven its way into my self-worth, both making me feel lesser and greater in equal measure.

Has it made me a better person? I couldn’t say. My experience with having this medical condition has pushed me to pursue extracurriculars and consider career paths in health education and accessibility because I realize that the treatment I have access to is an incredible privilege.

But on the other hand, epilepsy can make me incredibly irrational and illogical, and sometimes I let my fears dictate my life.

In less than a year from now, I will have lived with this disorder for half of my life. And the year after that, I will have known life with this disorder longer than I have known life without it. And the thought of that destroys me a little. I pretend that being epileptic is not relevant to who I am now, that it has not shaped me. But that’s not true. I carry epilepsy with me wherever I go. It’s in my interests, reactions, and interactions and how I view the world. I had accepted long ago that I was epileptic, but only now have I begun to become okay with it.

I think writing and publishing this story is another step in the right direction towards learning to be okay. I have faith that sometime in the future, the bad days – the ones where I’m consumed by the memories and filled with resentment – will become fewer and farther between. I have faith that someday I will truly believe that having epilepsy is not an imperfection that I need to compensate for, nor a defining point for my character. And I have faith that you, reader, will do one thing for me: please, don’t call me possessed.