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
