My Life With Epilepsy

I woke up on the floor with the concerned faces of my roommates and strange men in uniforms hovering over me. My heart was racing, my skin was damp with sweat, and my eyes were struggling to focus on anything. I already felt an unnatural soreness cramping my muscles; it seemed unlikely I would be able to stand up without help. I stuttered out, “What happened?” when I regained control of my mouth, and tears spilled out of my eyes as one of my friends said the phrase I dread: “You had a seizure.”

I was diagnosed with Juvenile Myoclonic Epilepsy (JME) in 2014. JME is a type of epilepsy characterized by jerks that cause people to lose control over their muscles for a short period of time; absence seizures during that make people stare off into space for about ten seconds uncontrollably; and general clonic tonic seizures (often called grand mal seizures), which are probably what you think of when you hear the word seizure—full body trembling, drooling, etc. I was diagnosed with epilepsy relatively late in my life because I only had jerks until I was 19, when my sister woke up to me having a seizure in the middle of the night two days after Christmas. 

I’m lucky. Medicine controls my epilepsy really well. I’ve only had seven grand mal seizures in my life, and they were all caused by a lack of medicine (the incident described above happened because I missed a couple pills). But I have also had so few seizures because I follow the directions from my neurologist to a T. Flashing lights, alcohol, and sleep deprivation are triggers for seizures. Even when you’re medicated for epilepsy, you still have to avoid these influences. As it turns out, these things are hard to avoid in college life. Parties usually include drinking and a strobe light of some sort, and usually, a good night out doesn’t even start until 11. So traditional fun nights in college = health risk for me. Parties aren’t the only social outing I have to avoid. Since I have to be really diligent about doing my homework ahead of time to avoid sleep deprivation, I miss a lot of fun outings for late night snacks. Epilepsy is wildly inconvenient at this stage of my life. 

I’m guessing I’m not the only person that has personal issues that keep them from having the kind of rowdy college experience advertised in movies. I’m here with you, whoever you are, and I want you to know that you can still have fun. Sometimes, I’m so mad that I have this disorder keeping me from taking shots with my friends, and I’m allowed to feel that anger. But once I was able to move past my disappointment that my life is different than I anticipated, I discovered some unique opportunities that I have because of my disorder. Many of my college experiences have been better because I have to treat college a little differently than my peers. For instance, parties are a totally different kind of fun if you’re sober. I meet so many interesting people, I dance, and I always remember the experiences I have. I’ve taken to wearing really cool costumes to parties because then people are focused on my wicked outfit instead of the lack of a cup in my hand, and I’ve become very popular at events because of this tactic.

Also, it feels so good to be well rested. I know that staying up all night is fetishized in college, but it’s so bad for you. In the wise words of Ted Mosby, “Nothing good happens after 2 a.m.” You can enjoy a party and leave when you can still get eight hours of sleep, and I promise nothing life-changing will happen. I’m more alert in classes now that I am conscious of my sleep patterns, and the routine I set for myself makes my whole life feel healthier. There are times when I wish I could stay out later and not worry about sleep, but I can’t think of a time I missed something truly incredible because I left a party an hour or two earlier than my friends. 

The changes to my lifestyle have challenged me to suggest alternative plans to drinking. I’ve had board games nights, movie marathons, and fun dinner dates instead of attending parties, and the moments I shared with friends in these scenarios were such a gift. I’m not condemning parties; I’ve just discovered because of my disorder that parties aren’t the only way to have a social life in college.

Being the kid who has to sit out can be really shitty, but it isn’t the end of the world. I’ve found ways to enjoy college despite my epilepsy, and I think others can too, whatever it is that prevents them from doing college the way most people seem to. There is a pressure to fulfill the college social lives advertised in Animal House and Legally Blonde, but there are millions of ways to have fun while you’re getting your degree. If drinking every night is the way you do that, more power to you. But if you aren’t interested in the party scene or can’t be part of it like others for some reason, you can still have a good time in college. The most important thing is to do what’s right for you—physically and mentally—whatever that may be. So in 2017, remember to take care of yourself 100% of the time. I promise you’ll thank yourself later.

Feature painting by Kirsten Samanich, @kiri_onmywaywardson