Epilepsy and school: something people will never understand
@Mary Perry / Adobe Stock
Epilepsy and school: something people will never understand
There is not a polite or gentle way to explain to a friend or family member that they will never have the capacity to understand, on my level, the extent of what it feels like to have combined epilepsy and school. Sometimes even people you barely know decide they can grasp your predicament. You can’t fathom the toll it takes on a person to all at once realize they aren’t the person they thought they were, especially, in my case, somewhat publicly.
The pity, unwavering condescension, whenever you talked about epilepsy and school, whenever you sought more understanding and support. And then ruminating thousand of times about epilepsy and school and how you were treated. Attempt to imagine this and also the obstacle of being a teenage girl. Welcome to what became my new normal in a matter of hours. This unfortunate new normal was a girl in the second half of her senior in high school diagnosed with epilepsy.
It will take a novel to unpack the entirety of my story about epilepsy and school, so instead, I will target one night that, most likely, will permanently be imprinted in my brain. First and foremost, the seizures were entirely on lockdown with medicine by this time. I loathe hospitals far too much to write a story around an experience in one. This was about a little more than a year post my diagnosis, and it was a couple of days after having a seizure. Full disclosure that’s primarily on me, not my brain waves; it was a rough patch, and I was making somewhat self-destructive decisions. There was a somewhat large house party going on, and my brother, my sister, and my sister’s boyfriend were about to leave. I was feeling sorry for myself, and they convinced me to come along, looking back probably because they too felt sorry for me.
We all get to the party, and I’m not claustrophobic by any means, but in specific areas of the house, not being accidentally grinded against was not a luxury you could afford. However, we are all in our early 20s, so lack of personal space and clean air is a given. We run into some girls my sister’s good friends with, and a girl, who shall remain nameless, was actually a longtime friend for both of us. She hung out with us as we tried to make our way to the kitchen. There were coolers of beer, and we each grabbed one. Okay, now if you know anything about epilepsy, it’s common knowledge that for most people, alcohol is a trigger. Look, you might be judging my choices right now, but I wasn’t going to drink the beer.
The thing is, every person at the party was holding a drink and its sole purpose was to act as a prop. Not everyone in that party needed to know I had dropped unconscious days before. However, if you don’t know exactly how it feels to be in my position, it is second nature to have a less than positive opinion of this being in my hand. At the time, I was naïve, and the thought hadn’t even crossed my mind that this was on anyone’s radar; I was under the impression that people considered me as an adult who can make her own choices. After picking up drinks, as we are walking into a less crowded space, I hear a very poor attempt at a whisper from my friend to my brother. “Should we let her have that?” she asked my brother. He responded with some version of I can’t make her choices for her.
Without even noticing, my body was somewhat frozen, and my beer bottle was shattered on the floor. They had disappeared, and I was stuck; in more ways than one. I had to get out; I need to not be here; maybe if I was somewhere else, I could be somebody else. As quickly as was possible, I squeezed through and ran around the swarms of people to get outside. I felt like I could vomit. I sat on the front steps with my head between my knees, my head spinning around with that one line, “should we let her have that?”
Right then and there, I, for the first time, grasped another people’s view of what I was going through. I am not an angry person, but at that moment, I wanted to scream because I knew no one was ever going to understand. You can think I was dramatic, but I wasn’t. I was finally accepting. It was something I had to come to terms with; this approach to my disability she had was not going to stop here. This was the new normal that I hadn’t faced for more than a year. Epilepsy and school were not good bedfellows.
This one experience forced me to reexamine situations with people I knew since they found out I had epilepsy. I remember when discussing epilepsy and school with my guidance counselor they would constantly refer to my epilepsy as “my condition,” like I had cancer or something. I remember my mom’s new way of talking to me like I’m now fragile or might break at any minute. My sister just having an approach of me needing to be babysat. For the longest time, I wasn’t viewed as an adult anymore. I wasn’t me anymore. My driver’s license was taken away for half a year, and I was 21 with no independence. Anywhere I went could have been a deathtrap. I never had conversations about this because thinking about how much they thought they knew how I felt provoked my anger almost immediately. The funniest thing of all is no one knew I was angry almost all the time, and it lasted for months.
Eventually, I went to therapy to discuss epilepsy and school and the trauma it caused me (after endlessly denying I should go). I re-enrolled in college and focused my, at first unrelenting, anger on studying, and it worked. If I’m being, honest other people’s opinions have put a dent in me being ready for a social life; thus far, that part of my life is nonexistent. It has been 5 years since I was diagnosed and three years since having a seizure, but I’d be lying if I said I didn’t occasionally get angry thinking about how no matter how much I achieve. I won’t shake people’s predictable opinions on what I should do. I had to learn to give up control of what other people are doing, and I stopped wanting to kill the girl who ruined that night. She still doesn’t know what she said, and I have no intention to tell her; not focusing on the past is what I can control.
Haley Hughes is an undergraduate special education major in Buffalo, NY. They drink a lot of iced coffee, are an avid serial killer documentary fan, who keep their sometimes prolific anxiety in check by baking. They also enjoy keeping all their personal feelings bottled up.