I can remember the exact day I discovered I had epilepsy. I can’t even remember which year it was (2006? 2007?), but the day, oh, I remember that.
April 1st. Hell of a prank.
The rest of the day itself left me pretty woozy. I spent most of it on a hospital bed, feeling very, very tired and wondering if I was allowed to sleep. I’d discovered it by virtue of getting up at 5 AM, you see, after having gone to bed at midnight; I had a plane to catch that morning, and I’d thought I could sleep on the flight. In retrospect, I’ve made better decisions. Had a seizure right by the door. Or so I’m told, anyway; all I remember is suddenly being in an ambulance.
I didn’t make the flight, obviously, so I didn’t get to do the school visit I’d been planning for–I was still in high school, you see, just starting to look into college, and I had planned to use spring break to visit one on the other side of the country. Thankfully, I got to visit later, and ended up being enrolled there, but at the time I wasn’t really happy about missing it.
The biggest inconvenience my lovely new disease caused, though, was with my driving.
Did you know in the US it’s illegal to drive within six months after having a seizure? I didn’t. I didn’t even have my license at the time; I was still on a permit. And suddenly I wasn’t allowed to make any progress for six months. Even under supervision, even just around the block, I wasn’t trusted behind a wheel. Which makes sense, but–over less time than I’d like, we discovered my seizures only happened in the morning, and only after I hadn’t gotten enough sleep. I never had to worry about afternoons or evenings. But the law’s the law.
So I couldn’t drive for six months, but I could deal with that, right? But even with medication, it took less than six months for me to have my next seizure. And less than six months for the one after that. It took nearly two years for the law to say I wasn’t a danger during the times I had never been a danger anyway. I was eighteen, and I hadn’t been allowed to drive for two years. And I was only a couple months away from going to college, where I wouldn’t have any driving practice at all.
My driving instructor finagled the system into getting me a test before I left, so I could possibly earn my license. The test was a long ways away, but it was there.
I failed within the first ten minutes. I spent most of the long ride back sobbing.
I did get my license, months later, but in my first three years of college I had five more seizures, so driving was still out of my reach. My junior year, I had a seizure in the small bathroom of my dorm room, which resulted in a faceplant straight into an irritatingly-textured wall, leaving me with some sweet facial scars for a few months. I’d just made it past the latest six-month period. When I got back home, scars still visible, I told my mom I’d got them when I tripped.
Since I was still so out of practice with driving, she insisted on doing a trial run with her as an observer. Since I was still so out of practice with driving, I failed miserably, had another little breakdown, and told her the truth. I also admitted I wasn’t sure I’d ever be able to drive. The past five years of my life hadn’t given me any indication that things were going to change. I’d keep having seizures, and the six months would reset, over and over and over. I told her even once I lived by myself, it would be pointless to own a car, because it was pointless to pay insurance on something I would probably never be able to use.
That last seizure was two years ago. My medication’s been stabilized, and I always get enough sleep. I graduated last year, and I’ve been driving safely ever since. As sob stories go, it ended up working out okay. Now my biggest worry with driving is my proficiency in getting lost.
It would be great to say I triumphantly overcame my disability. But chronic conditions don’t work like that. I still have that tiny niggling feeling in the back of my head telling me not to get too cocky, because epilepsy isn’t curable, and being 99% sure that my meds are on the right track this time still leaves one percent that could set me back all over again. Unless medical science pulls a miracle, that little feeling is never going to go away. I just have to live with it. And I do.
I still have one of the scars on my nose, incidentally. I kinda like it.