My Epilepsy Makes Me Unique, Not 'Defective'


This is what I look like during an EEG.

woman with wires on her head during an EEG test

Epilepsy has been my primary diagnosis since I was 6 years old. I remember being in the pediatric units at hospitals getting EEGs. Ornate rooms with cartoons and Disney characters painted on the ceilings and walls to keep kids distracted during the long tests.

I was teased at school when I came back from the tests. I would have glue in my hair, gunk poking out in all directions, and it made me look like I had some strange skin condition. Dandruff, certainly. The boys, especially the one I liked, made fun of me, and I would go pull at my hair in the bathroom, waiting until it was time to go home so I could finally get it all out. On test days, to avoid this, I would often beg my mother to let me stay home afterwards.

I remember taking my pill boxes and bottles to sleepovers, and my parents calling to check and see if I had taken my meds. For me, gaining weight and having the side effects, in particular, memory issues, which affected my studying, and also my mood were all big struggles I faced due to the medications I took for seizures.

On one medication in particular, I gained a lot of weight and, entering puberty, when girls are at the height of cruelty, this was a total nightmare. I began to associate my weight with medication, as when the subtle change of a medication showed to be able to have such an impact on how I felt about my body and too how others felt about me: I learned that people were kinder to me when I was thinner, even though I was the same person inside all along. These are all chronic lessons: things you know when you have lived with illness.

I have other chronic conditions. And, particularly now, these other conditions feel more pressing and at the forefront of my life. However, epilepsy has, as my dad always says, been the real crux of things. When I was in middle school, the boy I liked found out I had seizures and created something called the Lillian Seizure Dance, where he would walk past me in the halls and drop, flailing like a fish. It caught on. At that time, I had never even had a grand mal seizure, but, people hear seizure and think big fish flailing seizure.

 

Perhaps un-ironically, most people with epilepsy do not have grand mal seizures. Over 30 percent have generalized seizures which is the category that grand mal falls under, but very small, barely noticeable seizures do too. You would presume, seeing a petit mal seizure for example, that someone just got annoyed and rolled their eyes. I found out I had epilepsy because I was rolling my eyes a lot in class, and the teacher thought I was being insolent. She called my parents in to meet with her and they told her it was very unlike me. They took me to see a doctor. After testing, it was realized that the eye rolling was a type of seizure. I would stare off into space and miss entire sentences without realizing.

I have since had other types of seizures, including grand mal seizures. They are embarrassing, and scary, to those watching. Like with my other chronic conditions, I feel badly when seizures happen, as if there was something I could have done to prevent it. I lost my driver’s license about seven or nine years ago now due to seizures. Even when I had it, I remember a friend asking me if I was scared to drive, because as she put it, at any moment I could have a seizure and kill whoever was in the car. It had never crossed my mind, but after that moment, I was terrified of driving, despite being seizure-free during that time. I have since had periods where I have been seizure-free, but none lasted long enough to regain my license.

I have had several ambulatory EEGs (the kind where you wear the cables for roughly a day or two and carry around a little machine in a fanny pack to measure your brain waves at home, all the time, no showering or anything). My now fiancé was super supportive of the testing, and told me I was still beautiful. I know what it feels like to feel ugly or defective because of some disease you can’t take out of your body: you are stuck with it. I didn’t ever think I’d find someone who showed me that beauty I have regardless. When I went for this particular test, I was texting him and remember thinking, catching a glimpse of my eyes on the screen, that even with all the wires in my hair, I still looked lovely. The EEG tech and I were talking about him, and my school and writing, and I told her I wanted to take a photo. She thought it was funny, but I got it.

In that moment, all the years I had spent hating that little part of me that has epilepsy sort of disappeared, and I stopped caring about it so much. I care about it differently now – I want to work with it, because I understand it is part of me – and it can be a good part if I let it.

It makes me unique.

Before this, I saw it as something I tried to push down and forget about, and then when I would have a seizure it was always a horrible reminder of something I wished I could make go away. Something that had in many ways haunted me and played a part in many horrible memories. But the more that I thought about it, I also realized how having epilepsy has made me more sensitive, caring, compassionate and insightful than I would have been without it. I have learned more about the world and about the people in it than I would have otherwise, and I am grateful for these lessons. My friends who fight similar illness say the same thing. Many of them have gone on to change other people’s lives with their unique and valuable experience gained through their fight with their health issues, and I think that makes it all worthwhile.

Getting an EEG? Another procedure? Take a photo! Be proud of what makes you you. Tag us in it. #MyMightyBattle

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