Who is Tish? Part 1

I’m a sassy woman who has had Epilepsy her whole life. For the longest time, I thought that was all I was…Epilepsy Girl. Writing it like that makes me sound like a superhero. (or maybe I’ve watched too many episodes of The Big Bang Theory) Either way, I let it define me

Looking back, the constant chaos we call high school was where I feel I let my Epilepsy start to define me. When I think about those times, I think about how the school let me down. It would have been a great teaching moment for my fellow students; instead, it was a lot of misunderstanding and confusion for us all. I couldn’t explain epilepsy to anyone because I, myself, didn’t understand it. It made no sense to me and, quite frankly, scared the hell out of me. Think about it this way: one minute you’re standing in the hallway talking to your best friend, then you wake up to a blur of people and noises. Teachers/ nurses talking, students staring, followed by ambulance sirens, your mother crying, and a cold hospital room. End Scene. (This is legit what happened in 9th grade)

The crazy thing was that no one explained it to me, and no one saw the pain I felt, not just from the actual shaking but also from the humiliation of it all. I went from being a fun person to a girl who no longer trusted herself or others. From the girl who dressed nicely to the girl who peed her pants, all in one event.

The things no one saw or paid attention to

I started to shop and dress with one basic thing in mind. What would happen when I had a seizure? What would it show? What could I wear that would make me feel pretty without making others pay attention to me? That meant no dresses or skirts, or dressing up or heels. Just my hair, makeup, jewelry, and purses.

I went from singing in the chorus and all-county to hiding from the stage. I no longer wanted to be in the school musical, afraid that I would fall off the stage or risers. What I really wanted was the floor to open up and swallow me (dramatic, I know, but I was a kid). At least then I would stop worrying about every minute of every day. (FUN FACT: one of my seizure triggers is stress! And here I was constantly stressing myself out!)

People changed. My circle of friends changed and became smaller, down to 3. Although I may have caused some of that myself, as I kept pulling away out of the fear of the unknown seizures. Dating was nonexistent. Parties out of the question, and even school dances were questionable, as the DJs always had strobe lights, and sometimes I couldn’t get them to turn them off. (There was only 1 teacher who would help me get them unplugged; the rest told me to hang out in the cafeteria.) I was given new nicknames that I laughed about in public and cried about in my room.

My family didn’t see it either. Not because they were bad parents or siblings, but because I hid it so well. I became a pro at lying to them. It went something like this: “Mom, can you have Dad pick me up on his way home? I went to Lisa’s to work on homework.” The reality was I hated riding the bus as there was no way to escape “my new norm” of being picked on and laughed at. “Mom, I don’t want to sing in the chorus anymore, it’s dumb.” When really it was mom, I’m so scared that I will have a seizure on or off the stage. I’m not really sure why I never told anyone what I was feeling.

These were my daily battles that no one saw except for one person: my best friend, Lisa. She was the ONLY person who didn’t change and was always the one who would find me wherever I was hiding, crying. In many ways, we were both in the same boat. Both of us were fighting battles that we had no idea how to overcome.

Part 2 next week