My name is Rachel and I just wanted to share my epilepsy story for Brain Ablaze with the hopes that I could help others.

I suffer from epilepsy, specifically JME (juvenile myoclonic epilepsy), and was diagnosed at age thirteen. Which for me resulted in loss of consciousness when I’d seize and loss of bladder control. I can remember having my first drop tonic-clonic seizure in the bathroom on the morning of my middle school’s Halloween party. For years I struggled to attend school while trying different medications and therapies, and still suffering breakthrough seizures.

I think what they say is true, sometimes the cure is worse than the disease. This was unfortunately the case for me. While my Anti-Seizure Medications (ASMs) were helping reduce the number of seizures, at the same time they caused me to gain 15 lbs, I had GI issues, fatigue—and my hair was falling out. As a young woman that was my worst nightmare. Because then people could just look at me and see something was wrong. Before that I was able to hide my invisible disease and no one could tell I was sick by looking at me. Trying to have a normal teenage life was difficult and seemed impossible. I couldn’t drive, go to parties with my friends, or attend my high school graduation because I was afraid I’d have a seizure. I also had to stop playing soccer, which at the time was my escape from the reality of my life.

At one point my illness seemed to become my identity and I hated that. I lost friends, I was sick and I became so depressed that I didn’t see anything positive or hopeful. I wanted a way out, and my mental health was so damaged that at one point I contemplated suicide.

What made it even worse was being treated by everyone around me like I was breakable and incapable of achieving what everyone else could. So one day I decided to change that.

I’ve always been active and I missed it. So I started out walking by myself on trails around my home. Then little by little I was able to work up to being able to ride a bike alone without having any seizures.

By the time I turned 18, I traveled by myself to London, England for a tryout with Arsenal Women’s FC. Unfortunately, two days prior I suffered another breakthrough tonic-clonic seizure— but I didn’t let it stop me. I was determined to live my best life. At that time I was in the mindset that I had to keep pushing forward because I had no idea if I might be another person with epilepsy who passed away from a seizure.

When I got back to Chicago from London I enrolled in college and eventually was able to achieve my ultimate goal of a Masters Degree. Now I’m working with children with disabilities in the unique career field of environmental education and horticulture therapy. Even though I still continue to face new overwhelming medical hurdles I’ve never looked back. I use it as motivation to continue to grind and work harder.

This past summer I was able to run the Epilepsy Foundation of Greater Chicago 5K which was a major achievement for me. Athletics is my sense of normalcy and freedom, but in this situation it also allows me to give back and make a difference, and that helps keep me going.

© 2023 Rachel Wales All Rights Reserved

Rachel Wales

Rachel Wales currently serves as an environmental educator in Chicago, whose work is focused on incorporating horticulture therapy to students with special needs. She lives with her husband who is also a teacher, and their rescue dog Ziggy. In her free time she enjoys gardening, athletics, and volunteering with her local food bank and animal shelter.