Living With Epilepsy: What It’s Like To Be Scared Of Myself
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Health and Wellness

Living With Epilepsy: What It’s Like To Be Scared Of Myself

The fear of not being in control, of having no say.

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Living With Epilepsy: What It’s Like To Be Scared Of Myself
webmd.com

Imagine going to bed one night, perfectly fine, only to wake up on the floor of your room in pain, confused, maybe even with a gash on your forehead. Every night when I go to sleep, there’s a chance that that can happen to me. That I will not remember a thing about how I got there or why there’s blood coming from my head, why my tongue feels like I bit down on it with all the force I have, or why my back feels like it was twisted every which way. I have a fear of going to sleep. I have a fear of myself.

In May of 2015 I was diagnosed with epilepsy, a seizure disorder. The morning it happened, I had gotten out of bed like any other day. I talked to my mom about how excited I was for work that day and grabbed myself a bowl of Cap’n Crunch. I ventured back to my room only to be overcome by this weird feeling. Everything felt out of place, I felt out of place. Next thing I know I’m being taken by ambulance to a hospital. I still don’t remember that ride.

I spent several hours in the ER, and frankly most of that time is still a blur to me. Lots of people kept coming in and out; I was hooked up to machines, all of this stuff was happening around me. I had absolutely no idea why I was there. Although the Snapchat I sent out of me with a nice gash going from my lip to my chin implied that something bad happened. Yes, I was on Snapchat in the ER — judge away.

That weekend I spent in the hospital, I was angry. Not because I was in the hospital per se, but because my confused self really wanted to go to work. Apparently confused me was perfectly fine going to work that morning — my boss had to text me to make confused me understand that it was OK. It was that day that I learned a lot of things. I had epilepsy, I would be losing my license for at least six months, I’d be on medication, and I could guilt trip nurses into getting my friends off their shifts at the hospital to come visit me. I also learned that my seizures happen at night, when I’m sleeping (or within an hour of waking up, hence my wonderful day in May).

Needless to say, since then things haven’t exactly been ideal. I’ve been on medication that has been increased each time I’ve had a seizure since that day. As of the latest, my friends affectionately refer to my medicine as “horse pills.” I’ve had to be driven around, anywhere I want to go. The last month of my senior year I was chauffeured to and from school each day. All summer I had to find rides to work, which conveniently about 95 percent of my family works at so it’s not hard to find a ride. The worst part though, is not knowing when another seizure will occur.

My seizures have all happened while I was asleep except for the one. It’s been believed that my trigger is stress, but no one knows for sure. That means that anytime I get stressed out, I have to fear waking up in the morning on the floor or just in pain. That’s why I say that I have a fear of myself, because my brain does this to me. In theory, if it gets overstimulated to a certain point, a seizure gets triggered. That’s what you typically think of for someone that has epilepsy: flashing lights and then suddenly, a seizure.

I’m scared of myself because there are days where I have no control. The medicine I’m on can cause bursts of anger or anxiety which I can do nothing about except ride it out. I’ve even been told at some points that it’s like I have a split personality. It’s a side effect to something that helps control my seizures, which I’ll accept somewhat. But I also have no control over my seizures; when they’ll happen, why they will; nothing. Since they happen while I’m sleeping, I have no warning. In theory, they are also caused by stress, but no one knows 100 percent for sure. Stress is unavoidable, every college student ever knows that. How am I supposed to go to bed at night and be stress-free when I have exams and papers and presentations and who knows what else?

I’ve lived and I’ve survived. I had my license returned to me a week after my birthday in December and was able to drive for two weeks before another seizure occurred. As of writing this article, whether or not I can keep my license is still up for debate. I have no say in the matter, and that is something I will have to live with. I have a fear of myself and hopefully my brain can stop acting up so that my fear can go away. Got that, brain?

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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