When I was originally diagnosed with epilepsy, I was not yet doing many of the things I would later discover to be effected by it. I wasn’t driving, dating, working, living on my own, or traveling. I was a kid and the older I get, the more things seemed to be touched by it.
About a week after my first seizure, I had the realization that I couldn’t be alone anymore. I didn’t know at the time if I would continue to have uncontrolled seizures so I developed a fear of walking alone, being by myself in a room, the bus ride to school. What if it happened in front of a class or while walking in the hallways. If it happened while I was in the car with my family. Most nights, I stayed up late with worry, wondering if it would happen in my sleep (something that in fact did but was hurt by my staying up late worrying about it).
In retrospect, the worst part was not knowing much about epilepsy at all. Before that, I had never even really heard of it. Never seeing it except for on medical shows and in horror movies. The film “The Exorcism of Emily Rose” came out a while after my diagnosis and that did not help to soothe my worries. I didn’t have any family members with it, let alone classmates, friends, or acquaintances.
Over time, my knowledge expanded. I guess when something doesn’t directly effect you, you’re not as likely to go researching it. But I did and as I began to know more about my own condition and epilepsy in general, some fears began to fade. I began walking alone again, taking long walks with my dog like I had before my seizures began. The fears of having a seizure at school dissipated as I started talking with teachers about it. I was met with understanding and support from most people in my life. Family and friends I felt comfortable sharing it with offered advice and reassurance that I could lean on them. But those I wasn’t as close with didn’t understand or really take interest. For young teenagers, those things aren’t a big deal if it isn’t cancer or life-threatening.
So I moved forward with my life, I began high school. My epilepsy at that time went dormant, not really encroaching on the big “firsts” of my life for a while. First school dance, play auditions, finals, first kisses, it all felt normal and the idea that I had a neurological condition took a backseat to the excitement of being a high schooler.
But then it came back. It was devastating to realize that it wasn’t just a one time thing. So the driver’s ed classes I had bookmarked went to the wayside. I was told “another six months” more than once (In my state, you must be six months seizure free to drive, which to a sixteen year old, is forever). To a teenage me, getting my license was the epitome of real “growing up”. Each time I approached that six month mark, another seizure would happen. Pushing back driver’s ed over and over while high school passed me by. I ended up having to wait until I was 20 to begin driving, to my dismay and total embarrassment. I often just told people I didn’t want to drive or that I was working on it, but I was mortified to always have to ask for a ride or have my parents drive me.
After graduation, I began to see more issues. My epilepsy changed after I left puberty. I left university because I felt uncomfortable living far away from home, fearful of having a seizure and ending up in a hospital three hours from my family. I moved home, enrolled in community college, and took a job at a restaurant. I enjoyed it and worked hard, but found that my seizures would come at the worst times. I missed work and school because I would stretch myself too thin. Finals week, lunch rushes, while out with friends, I would hide and have a seizure, all the while trying to appear like any young, healthy, college aged girl.
I had avoided medication for a long time, mostly because doctors had discouraged it and I was afraid of the potential side-effects. But around the time I turned twenty, I had realized that I couldn’t keep ignoring my increasing seizures, confusion, migraines, and exhaustion.
So I started taking the meds, which helped but created more complications. I had been on birth control since I was sixteen, but I had to stop because my anti-epilepsy drugs rendered them useless. I also had to cut out alcohol and carbonated beverages out of my life. Suddenly, my social life began to change. I was tired all the time, confused, dropped 15 pounds, had no appetite, couldn’t go out with my friends because I couldn’t drink or have an energy drink to keep up. I was miserable. So, without consulting my doctor, I quit taking them.
It wasn’t a smart decision. At first, it was fine. I gained my energy back, started drinking again (now 21 and legally, I thoroughly enjoyed the bar scene in those first few months) and felt like myself again. But the seizures got progressively worse. What used to be a seizure every month or two, began happening every day. More than once a day. I had to take responsibility for my health, but was in denial.
It took me another year to get my act together. I bit the bullet, scheduled an appointment with a new neurologist, and he chewed me out (not really, but he did tell me I was not doing what I needed to do, and that was enough to make me feel like total shit). So I pulled it together, I got back on medication, minimally at first, but now I’m up to a high dose. I cut out alcohol, stopped going out, and now have a bed time. I’m not perfect at keeping my regimen, but I’m better than I was at fourteen, sixteen, nineteen, even twenty-one.
It’s also made me grow up a lot, that last (my current) neurologist I went to gave me a wake up call: you are not prepared for the big one. The big one being an uncontrolled Grand Mal seizure, one where I stop breathing, and don’t wake up. In the years after I was diagnosed with epilepsy, no one had ever told me about SUDEP. Sudden Unexplained Death in Epileptics. I was not prepared for having a grand mal, in my sleep, that could kill me. I was a prime candidate and never even knew. It was easier to write off epilepsy as just a part of my life when I was younger and naive. But I realized after that appointment that my epilepsy is not just an inconvenience, it could kill me if I didn’t take care of myself.
This lesson isn’t just about epilepsy, it has reminded me that life is fragile. We go about our lives thinking that nothing bad can happen to us, we get used to the risks of our lives and become numb to them. We don’t think death can touch us when we’re young, but the more I grow, the more I realize that we don’t control the universe. But we aren’t untouchable and we have to remember that. I don’t say that to be dark or morbid, but to remind myself that we have to appreciate life’s experiences while keeping smart.