It doesn’t matter who it is, it’ll come up in one way or another.
“Why don’t you work the overnight with us? It’s always so much fun working with everyone with the added bonus of not having customers around!” “I would, but I have epilepsy and not getting sleep is one of my biggest triggers.”
“We’re all going on a bar crawl this weekend, do you want to come?” “Yeah, but I’m not able to drink because I have epilepsy and alcohol doesn’t mix well with my meds.”
“Everyone is going on a car trip later this month and we’re trying to get as many people as possible to split up driving, do you want to come?” “Yeah, but I’m not able to drive because of the whole epilepsy thing.” *Insert ten-minute explanation of epileptic driving regulations.
It doesn’t matter how the topic comes up or how I describe it, somehow the reactions are always the same. Confusion, wondering if I’m going to have a seizure in front of them, wondering if I’m going to start puking blood in front of them. But there are some rare occasions when people actually ask questions and want to know more about it.
This is my answer to them.
Even though epilepsy is a genetic disorder, I developed it in a different way. The only known occurrence of epilepsy in my family has been my uncle’s old dog and I’m like 99.99% sure I’m not related to her. I wasn’t even born with it, I developed it later when I was a freshman in high school.
My body had a bad reaction to the Gardasil HPV vaccine and developed epilepsy. I’ve been diagnosed by multiple neurologists and epileptologists, I know other girls that had this happen to them. I’m still pro-vaccine, I don’t regret getting the vaccine. I’d rather have epilepsy and know that I’m not going to get HPV than risk getting HPV. But this is all besides the point.
I see myself as one of the lucky ones. Not in the way that I was lucky to get it, but in the way that I was lucky enough to get such a mild case. I have maybe three a year, but there are some people out there who can have three an hour.
I have the generic kind of seizure that people think of when they hear the word ‘seizure’ where my whole body falls to the floor and I become the world’s worst breakdancer. They’re painful, I usually get bruised and spit blood, they don’t sound pretty.
In addition to those, I also have ones that are kind of the exact opposite. Where those ones, it’s everything going off at once and flailing all over, the other kind is my body completely stopping. I can be in the middle of a conversation and just stop for a couple of minutes, then continue as if nothing happened.
I personally think the second ones are scarier solely because, if I’m not with someone, then I wouldn’t know if it happens. With the first kind, the muscle strain tells me that I had it so it’s no mystery.
Even though I have the generic kind of seizure, I’m not triggered by strobe lights like people always seem to think so. I’m triggered by things like lack of sleep, anxiety, extreme temperatures, lack of food, alcohol.
So everything that happens at college triggers me technically.
It’s easy to say something like, “I would just take my meds and never have a seizure.” But that doesn’t always do the trick. I’ve been on at least 5 different medications since being diagnosed. (No, marijuana was never one of my medications.) They stop working, they have bad reactions to your body, they can cause you to become ill. It’s not always as easy as just taking your meds.
It’s not easy, it’s not fun, but I’m making the best of it at this point. If I can’t laugh and make a joke out of it, I lost.
Xx 5 months, 24 days
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