How It Feels to Be 20-something Years Old and Living With Epilepsy

Three years ago, when I was 20, my puppy woke me from a dead sleep at 3:30 in the morning. Not a good time. I was supposed to start my new big-girl job as a talk radio producer later that day, so I wanted to be well-rested and on my game. I had a lot to prove.

But, the dog. In my aggravated state of drowsiness, I slipped on my flip-flops, went out onto the cool, wet lawn with Niles — and that’s all I can remember. The next thing I knew, I was in an ambulance, damp and confused. The paramedic was hovering over me, aggressively asking if I knew my name, the date, and city we were in. I tried to make my brain generate an answer, but I had absolutely no idea what was happening.

Could it be cancer? Did I have a stroke? Am I dying right now? I was told that I had collapsed and had experienced what appeared to be a seizure. Nobody knew why.

After countless hours of being poked, scanned, and pumped with Ativan, the hospital’s resident neurologist finally paid me a visit. Turned out I had been living with idiopathic generalized epilepsy since day one. I was stunned. I couldn’t fathom the fact that this had been lingering in my brain for the last 20 years.

Epilepsy, I learned, is a condition caused by abnormal electrical activity in the brain. Idiopathic generalized epilepsy tends to manifest sometime within the first two decades of life and there is no identifiable cause. Seizures can occur during childhood or adolescence, but can also make their grand arrival once you hit adulthood. People can outgrow this condition, but I found out that I’m among the vast majority of lifers who will have this annoying little tick lingering at the back of their minds forever.

The doctor told me that I could manage my epilepsy and that if I implemented certain lifestyle changes, I’d be able to maintain a stable life virtually free of recurrent seizures. In other words, I personally had the power to significantly reduce my risk of collapsing and developing another nasty case of the shakes. On the list of directives: Don’t skimp on sleep, don’t stress, consume very little alcohol (or, ideally, avoid it altogether), stay away from drugs, and take anticonvulsant medication.

Sure, I thought, I could handle this. It’s not like I was a 20-year-old woman concerned mostly with partying or anything.

As hard as it was going to be, I wanted to really take care of my health, because the fears are real. There are an inordinate amount of safety risks associated with having a seizure, like drowning, causing a major car or machinery accident, or falling from high point like a subway platform. On an emotional level, I worried about being singled out, judged, or pitied; missing out on great experiences; and fucking up job opportunities. My first (and most suppressed) fear was the possibility of having a seizure while getting intimate. My mind conjured up elaborate scenarios involving perfect, rough-and-tumble, steamy sex, abruptly interrupted by an Exorcist-style episode. I was petrified.

In an effort to take care of my health, I bailed on barhopping adventures and shenanigans with my girlfriends, and I was OK with that at first. I figured I didn’t need to get wasted, dance on tables, and act a sloppy fool until closing time in order to have fun. But my friends weren’t as cool with it. They eventually stopped asking me to hang out, and I sunk into a depression I hadn’t anticipated.

Although I was crushing it at work and loving college, I felt completely alone and misunderstood by my circle of friends. I so badly wanted to prove that I was still the fun, sassy, and irreverent person I had always been, so I started going out and drinking again. I was back in the game. I knocked back those sickening liquid cocaine and tequila shots and neglected to take my meds on a regular basis.

It wasn’t a matter of if I was going to collapse again, but when.

The emotional and physical self-destruction finally reached a breaking point on New Year’s Day last year. The night before, I had been feeling confident and invincible at a New Year’s Eve party I was co-hosting. I was having the most fun I’d had in a long time — I laughed, flirted, drank, and danced on repeat. But as the night carried on, I began to lose control. After several hours of heavy drinking and chain-smoking weed, I passed out on my friend’s old futon in nothing but stockings and a baggy sweater.

My eyes popped open at 8:30 a.m., and I was hit by an intense wave of hangover thirst. I grabbed the first thing I could chug: a bottle of 7 Up.

That’s all I can remember.

I woke up to a paramedic ripping off my tights and unhooking my bra to stick electrodes on my chest and legs. After that, I had two more seizures, which could’ve caused serious damage. Experiencing consecutive convulsions can lead to cardiac and respiratory disturbances, as well as brain injuries that bring about complications like short-term memory loss (luckily, I got out of it with just a few bruises). I had single-handedly triggered a major episode by not taking my medication, skipping sleep, and overindulging in drugs and alcohol — the “ultimate trifecta,” as my doctor put it.

The entire situation was humiliating and I put my family through hell. I had never been more disappointed in myself for not only neglecting my body, but for having no regard for how my actions could affect others. I vowed to make a change.

I realized that epilepsy is not who you are, it’s something you happen to have. You’re absolutely entitled to freak out about it. Yes, it can be a real shit disturber if you don’t take care of yourself — and that’s something I had to learn my own way — but it can also be freeing.

Almost two years later, I’ve come a long way. Through plenty of self-reflection and help from a cognitive behavioral therapist, I’ve learned to put my mental and physical health first. ​I no longer care about whether or not people understand my health limitations. I allow myself a couple cocktails every now and then, I go out until a reasonable hour, and do naughty things with my boyfriend without a single shred of shame or worry.

I sometimes get sidetracked by those nagging what-ifs. What if I have a seizure and veer off the expressway? What if I lose consciousness in the bathtub and someone finds me days later, floating without a pulse? I can’t anticipate how or when it may happen, I can only focus on what’s important at this very moment: being a successful woman who slays.

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