Epilepsy: the disease that ruins raves. We all think we have a pretty good idea of what it entails. Flashing lights cause you to flail about like a puppet in an earthquake, and that’s about it, right? Actually, there are three categories of epilepsy, the symptoms of which are all over the place, and only one of them even has a known cause. The pop culture definition of epilepsy (which is, tragically, where we get like 99 percent of our definitions), is almost entirely wrong. Eleanor Levinson has been living with epilepsy for ten years, so we figured we’d ask her what it’s really like:
#5. You May Have a Seizure and Not Even Realize It
A seizure is basically a tiny Thor throwing a tantrum inside your brain. The electrical patterns go all sorts of crazy, and that leaves your memory screwed when it’s all over. Once, I was walking around in my apartment and saw a trail of blood on the floor. Operating on ditzy horror movie starlet logic, I followed it, and it ended halfway up my bookcase. I rushed to the bathroom mirror and saw that my head was bleeding. Turns out I’d had a seizure, hit my head on the bookcase, and forgot the time between waking up and finding the blood. It’s a common occurrence to forget the first few minutes after you wake up. There’s no practical difference in the feeling between “oof, Mondays, right?” and “I just had a seizure.”
After a seizure, you’re slow cognitively, but you don’t look outwardly different. So your boss might wander in while you’re in a post-seizure fugue and give you a list of things to do. By the time he leaves, you’ll not only have forgotten the tasks, but that he ever talked to you in the first place. One time, I went to a dinner party shortly after having a seizure. I don’t remember a lot of it, but my boyfriend told me that I sat there for two hours and didn’t say anything. At one point, I apparently started punching him. I only realized what happened when he told me that his friends thought it was a bit weird that I stared silently for several hours and then started beating him in public. Generally not the best signs of a healthy relationship.
#4. Epilepsy Complicates Your Love Life in the Strangest Ways
With my type of seizures, I fall down and get injured a lot (see The Case of the Crimson Bookshelf, above). When I was working as a babysitter, I had black eyes all the time. I didn’t want to tell them that I had seizures, because I didn’t want them to mistakenly assume that I couldn’t watch their kids. I ended up using the old domestic violence excuses, like “I walked into a door” or “I just fell over.” I was dating a buff guy at the time, and people would always give him looks on the street because of it. They assumed he was beating me. It can actually be a strain on a relationship.
Plus, you wouldn’t believe how many people have hit on me specifically because I have epilepsy. And they cut to the chase. The first thing they ask is if I’ve ever had a seizure during sex. I don’t get it — a seizure is by no means an attractive thing, and if one happened while you were having sex with me, you almost certainly wouldn’t enjoy it. Unless you also enjoy things like necrophilia, in which case, you’re a real catch, huh?
The pickup lines mostly happened when I was in college, but it wasn’t the typical jockish douchebag frat guys that you’re all picturing. Almost every guy who found my epilepsy hot was the artsy, guitar-playing, skinny hipster variant of douchebag. I’m guessing it’s because a lot of them thought of themselves as sensitive and quirky, but weren’t quite sure where to draw the line. I promise you that line is long before “I want to bang your disease.”
#3. Seizures Aren’t Always Triggered by Flashing Lights, But “Flashing Lights” Are Everywhere
Flashing lights can and do cause seizures, but they aren’t the only trigger. And even “flashing lights” is a far broader thing than you realize. Have you ever been on the highway and seen how the Sun flickering through the trees creates a sort of strobe effect? I was riding in the passenger seat of my mom’s car when I was 17, and light shining through the slats of a bridge we drove across caused my first seizure. We might as well have held an impromptu car disco.
Most of my seizures are caused by sleep deprivation and stress these days, but I haven’t exactly made the rave scene lately, so who’s to say it isn’t still an issue?
It’s hard for me to travel (jet lag is a unique combination of stress and sleep deprivation, like the peanut butter and jelly of seizure inducement). I can’t go out and party with my friends because, again, if I don’t get enough sleep, I’ll have a seizure. I’m in my 20’s now, and I recently got back from the first trip I’ve ever taken on my own. It was sort of hard to enjoy, because I was constantly worried about what would happen if I had a seizure while traveling alone — not an unrealistic scenario, what with all these dudes who apparently start jerking when they see a girl jerking.
#2. Epilepsy Turns Everything Into a Death Trap
Driving laws vary from state to state, but they all basically say “stop having seizures if you want to pilot these careening metal death machines.” Like you’re doing it by choice, because epilepsy is such good exercise. Most states require that you’ve been seizure-free for six months to a year before you can drive. Have your first seizure in years while living in one of the 41 states that have “fixed period of time” laws? Say goodbye to your license for a minimum of three months. I have to be totally seizure-free for an entire year before I’m allowed behind the wheel.
Everyday tasks that no one else thinks about suddenly become daunting and horrifying. I sometimes worry that my dog might run into traffic if I have a seizure while walking her. I get nervous while cooking over the stove. My dentist tells me that I’ll probably have to have a root canal someday because of the nerve damage that falling on my face so many times has caused. Falling in the shower can cause serious injury to anyone. How fast can you get safely to your ass in a slippery bathtub? Because I only know about three seconds before a seizure hits me, and then I’m gone. Walking up a flight of stairs suddenly becomes a huge risk. What happens if you have a seizure halfway up? The short answer is “gravity.” If you go swimming alone and have a seizure, say “yo” to the cast of The Abyss and Aquaman, because you’re all breathing water. Some more successfully than others.
#1. Seizures Don’t Look Anything Like They Do On TV
If you see a seizure on TV, the victim will be violently shaking while a team of doctors holds them down and shoves something in their mouth so they don’t swallow their own tongue. In reality, it’s impossible to swallow your own tongue, and if you try force-feeding your wallet to a seizure victim, you might seriously injure them – you’re forcing their mouth open while they’re clenching it shut, which can break the jaw. The best thing you can do for them is roll them on their side, make sure something soft is under their head, then let them ride it out like a bad acid trip. In fact, it’s not even that bad. The person having the seizure isn’t conscious — it’s not a painful or uncomfortable experience. You simply black out. Acid Trip Guy has to deal with those bird-things from The Dark Crystal pecking him from the inside out; seizure girl just falls over, then wakes up with people staring at her uncomfortably.
There are a ton of different types of seizures. Tonic/clonic seizures are the dramatic TV fodder. Those are the types of seizures I have, but they don’t look nearly as cinematic in real life: you turn so pale you’re almost blue, there’s a contorted look on your face, and you start shaking. More like a Smurf getting the electric chair than a damsel in distress being possessed by demons. There are also absence seizures (fainting for a couple of seconds), atonic seizures (you ragdoll when your muscles all give out at once), and myoclonic seizures (everyone gets these, like when your limbs jerk as you fall asleep), to name a few.
So hey, there you go — if you’ve ever had a dream that you were falling and jerked awake, you are technically a seizure victim. Go nab yourself some of that sweet possibly-necrophiliac-guy-that-brings-an-acoustic-guitar-to-a-party ass.