Living in the Moment With Epilepsy

Campbell is sharing her story about living in the moment with epilepsy

By Campbell Macy , Nebraska

Person with Epilepsy

Thursday, October 19, 2023

My name is Campbell. I am 18, and I suffer from tonic-clonic seizures. My first seizure was a complete surprise, and so was the epilepsy diagnosis that soon followed. I was in my first year of middle school and had just turned 12 when it happened. My mom still tells me about when the school called and told her I had had a seizure. She said, "My kid doesn't have seizures." And it's true. With no family history or any accident-related injuries, there was no reason for it all.

At 12, most kids are having sleepovers and hanging out until late. I couldn't. I'm at a higher risk for seizures if I don't get enough sleep, and despite the name, very little sleeping usually happens at sleepovers. They aren't usually major life events, but it feels like it to a 12-year-old just trying to have friends. In the following years, I had many more seizures at home and school. I've been fortunate I haven't sustained any lasting injuries.

Perhaps even worse than missing sleepovers as a kid is being unable to drive. In Nebraska, the driving law states that you must be seizure-free for three months before driving. Driving is such a freeing experience. Going where you want without having your parents or someone else taking you is amazing. Seizures take that freedom from you. 
I just finished my first year at college, which wasn't easy. Not just because I completely switched majors but because I had three seizures at school and one at home over winter break. I'm so grateful for my roommate and everything she's done during my seizures to keep me safe. It's been a rough road so far, and I still have a long way to go, but I'm so lucky for all the people I have around to support me. After seven months of being unable to drive, I started driving again just a few weeks ago. The first day back, I drove around town for over an hour with the windows down, hair blowing, and music blasting. I missed it so much.
I live on the assumption that I will have another seizure again. It's a terrible thought but it also puts things in a new light for me. I can do nothing to stop my seizures, as I still have breakthrough ones. I've learned that I need to live in the moment. It's not about how long seizure-freedom freedom lasts but how well I utilize it when it does. 
I didn't accept the fact that my epilepsy was going to impact my whole life until the last month of my first year of college. For seven years before that,  I ignored the impact of my epilepsy diagnosis. Sometimes accepting my diagnosis looks like having a breakdown and calling my mom sobbing to talk about how much it all sucks. Life is hard, and having epilepsy or caring for someone with epilepsy makes it even more challenging. Despite all the difficult moments, thoughts, and experiences, I have made it this far, and I want other people to believe they can, too. You are strong, but you don't always need to be strong. It's okay to break down; sometimes, you feel better. 
I love my family and friends, and while most of them have watched me have a seizure, they don't understand what it means to be the person who suffers from it. I am sharing my story to get to know more people who understand how much it affects your life and those around you.

I also want people to know they are not alone in their trials. I want the elementary and middle school kids to know that just because they have seizures doesn't mean they are broken. I want kids with epilepsy and seizures to be confident despite their diagnosis, and I hope I can serve as the inspiration I needed when I was first diagnosed. 

Reviewed By: Sara Wyen

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