james naleski | Epilepsy NYC - Epilepsy Foundation of Metropolitan New York

My Epilepsy Story

I recall the day I had my first seizure very well. I was walking into the room where a school-wide mass was taking place when suddenly, as the music began, I became very anxious. Everything seemed to be in slow motion – even the music slowed down and I started to shake. I did everything I could to continue standing but the pain was too great. I slowly dropped to the floor. At one point, I thought I was dying (I thought this was the end). I woke up to the comforting smiles of my middle school’s vice-principal and nurse. My body was physically drained. They told me I had a seizure.

What was a seizure? For someone who had no bad medical history, why me? The shock of the diagnosis of Epilepsy was a bit overwhelming in and of itself, but then I had to learn all about it. All of it seemed so surreal. Over the next two years I went through countless seizure-drug combinations, some of which drastically changed my mood. At one point, brain surgery was discussed.

I was already struggling with anxiety but the diagnosis only made things worse. I constantly would wonder “When would my next seizure happen?” I was terrified. Seizures didn’t just affect me physically, they affected me emotionally and socially. During Middle School, I was nervous when I wasn’t around an adult. Also, I felt other students didn’t really understand me, some were even scared to have me around. There was always a sense of guilt and that I just caused ‘extra work’ for everyone; often I just wanted to disappear.
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In the 9th grade I starting to become very socially withdrawn and didn’t feel accepted. I began to spend more time composing and engineering music, whether it be in the hospital, my room or a local studio. I caught a break and started working with major songwriters and recording artists, while continuing school. Throughout high school, I only had a few people I could confide in. There aren’t a lot of people who will understand those daily struggles. Most never saw the tears or the endless nights in the hospital.

When I graduated June 2014, my seizures were finally controlled by medication. I recently started college, focusing on graphic design, while continuing on music collaborations. I consider myself extremely blessed to have had great support from family, teachers, doctors and school nurses.

My dream is to create a career in the arts, one that will help inspire other struggling artists to persevere and push beyond the seemingly hopeless circumstances they sometimes face in life.