I have epilepsy, and it’s not funny. About 3 million people have epilepsy in the United States, and I can bet you almost all of them would agree that the condition isn’t generally humorous — unless you’re the one managing an unpredictable life that comes with having seizures, in which case you learn to find humor wherever you can.
When I was 19, I started blacking out. I lost consciousness but didn’t pass out, and I would wake up confused, groggy, and very aware that I just hadn’t “been there” for the last minute or so. Then, my short-term memory started suffering. Conversations I’d had only days before fell right out of my head (no pun intended). I was in college, and the last thing I needed was my knowledge evaporating.
Begrudgingly, I visited the doctor, who plainly told me that the “funny spells” were complex partial seizures. Seizures? I didn’t even realize that seizures manifested in any other way than the grand mal variety most people know. But that’s what my blackout episodes were.
The diagnosis explained my suffering short-term memory and my recent struggle to learn new skills. And it explained why I felt intense déjà vu paired with irrational fear and a sense of impending doom right before my consciousness disappeared into oblivion. The seizures explained it all.
My seizures had not only been causing me to black out, they also caused me behave erratically and unpredictably, only to have me regain consciousness moments later with little to no knowledge of what I’d just done. Scary? Yes. Dangerous? Absolutely. Hilarious? Sometimes!
You see, if you knew me, you’d know I try very hard to be considerate and professional. I’m not the girl who gets into confrontations or who needs to have the last word. So, given that, I’ve been able to laugh (a lot) at some of the crazy things I’ve done while having a seizure. I don’t take for granted that I’ve never hurt myself or put myself in situations where harm was imminent. I’m eternally grateful that I’m alive and stable today because of my incredible support system and medical team.
So I laugh because there have been hilarious moments that get me through. They remind me it could have been so much worse, but it wasn’t. Here are a few of my favorite tales, and (just this once) you’re invited to laugh, too.
My college roommates meant well, but they always seemed a little nervous about my epilepsy. It didn’t help when, one day, I had a seizure and approached my roommate lounging on the couch. With a blank stare characteristic of complex partial seizure on my face, I said (in what I can only imagine was a horror movie voice), “It’s going to get you.”
Imagine. Her. Horror. I don’t remember doing any of that, of course, but I’ve always wondered: What was going to get her? Was Stephen King’s “It” going to get her? Was Gloria Estefan’s “the rhythm” going to get her? I’d like to think I meant that “true love and happiness” was going to get her. Given that she’s a successful doctor about to marry the love of her life, I’d like to think I was doing her a favor by prophesizing her good fortune. But she was still understandably unnerved. Needless to say, things were a little awkward for a few days.
Seizures can happen at any time, which is why crosswalks or subway platforms can be sites of real danger for people with epilepsy. My seizures often seemed to be timed to inflict maximum embarrassment. On one memorable occasion in college, I was about to receive an award. It was a pretty big deal for me at the time. Before the ceremony began, I nervously poured myself a glass of punch, hoping that I looked poised and polished and award-worthy, when suddenly I froze in the grip of a seizure. To be clear, I froze, but the punch kept right on coming — over the rim of the glass, onto the floor, and into a large puddle around my shoes. And it kept coming even as someone tried to clean it up. It was mortifying. (They still gave me the award, though.)
Coming back to my senses after a seizure is always disorienting, but never more so than the time when I started off crossing the street. When I came to, I realized I had ended up walking the wrong way through a Jack in the Box drive-through. The first thing I remember is facing off with a car trying to pick up its order, looking for all the world like a charging bull. It’s one of the more dangerous seizure experiences I ever had, and I’m grateful nothing worse happened to me than getting honked at by some very confused customers.
Now, maybe so far you’ve been thinking “Sure, these are embarrassing, but at least none of them happened when you were on television or anything.” Well, don’t worry, because one totally did. It was a broadcast journalism class, and I was just about to anchor the show. Everyone was tense, the scene was chaotic, and we were all a little annoyed with our high-strung TA. Just as we were about to go live, I had a seizure. Without having any idea what I was doing, I ripped off my headset and marched off the set, with the TA yelling at me the whole way — through the headpiece I had just removed — apparently convinced I was quitting in protest. I really do try to be a kind and professional person, but seizure me? Seizure me does not care. (Is it terrible to say that it was incredibly satisfying and hilarious riling her up like that?)
Another time when my epilepsy made me come off like a charm-school dropout, I was at a fancy dinner with a group of friends. We were chatting it up, waiting for appetizers, when I began banging my butter knife on the table as though demanding that our salads arrive RIGHT THAT SECOND. Repetitive bodily behaviors like that are just one of the ways complex partial seizures can manifest, but of course the wait staff didn’t know that. Yeah, they just thought I was just the world’s rudest customer. I left a very big tip, but still haven’t been able to bring myself to go back to that restaurant.
There’s no handy guidebook for dating with epilepsy. I know I scared a few potential suitors away by telling them all about my condition on the first date (their loss), and it got pretty disheartening. So a few years ago, while waiting for the brain surgery that would hopefully get my seizures under control, I decided that I deserved to have a little fun. I resolved to go on some dates without bringing a copy of my MRI.
The system was working well until I met a guy I actually liked, and I realized that I really didn’t want to scare this one off. After a few dates, he mentioned a conversation we’d had, and to my horror, I couldn’t remember a word of it. I was busted by my short-term memory problems, and had no choice but to blurt out, “So, crazy story, I actually have epilepsy and it makes it hard for me to remember things sometimes, nothing personal. Also I’m having brain surgery in two weeks. Anyway, what’s your middle name?”
It was a lot to hit him with, and I was sure my disease had just cost me yet another thing I really wanted. But the good news is this: The surgery worked, my epilepsy is under control, and my seizures are mostly a thing of the past. And the guy? He hung in there after all, and now we’re engaged.
So in spite of all the scary, embarrassing, and sometimes hilarious things my seizure disorder has put me through, I think I get the last laugh. Because, the truth is, epilepsy sucks. Seizures suck. But when you have stories like mine, how can you not find a tiny bit of amusement in them?
As told by Penny York to Elaine Atwell. Elaine Atwell is an author, critic, and founder of The Dart. Her work has been featured on Vice, The Toast, and numerous other outlets. She lives in Durham, North Carolina.