From Donuts to "Epilectra"
Every 20 years or so, I’m diagnosed with a different autoimmune disorder. At 8, it was Hashimoto’s Disease (hypothyroidism). At 30, type 1 diabetes. At 50, I had my first tonic-clonic seizure. Seven months and two more seizures later, a neurologist officially diagnosed me with epilepsy. It started me on a roller coaster ride of medication trial and error. Over time, I had complex partial absence seizures every four to six weeks.
It was a long time before I could even say get myself to say “seizure.” I substituted “donut” since, as a type 1 diabetic, donuts were among my most taboo foods. I even found a donut icon to use in my calendar that noted when my seizures took place.
I began volunteering in the seizure monitoring unit at a local hospital, where my life and my attitude about epilepsy began to change. I found that most people I helped had two things in common. They had given up on their life’s dreams because of epilepsy, and they considered me “brave” and “heroic” for coming in to volunteer with them with epilepsy. I didn’t think I was either of these things. I was doing something I loved — volunteering.
I took the necessary precautions like utilizing public transportation, wearing a medic alert bracelet, and letting people I worked with know about my epilepsy and what to do if I ever had a seizure. While there, I created a pamphlet for patients called "SEIZE," which stood for Supporting & Empowering Inpatients Zealously Everyday. In it, I listed all sorts of resources to help people live more independent lives. There was information on public transportation, service animals, online education, and more.
My husband’s job took us to New York City, and then the pandemic hit. My experiences volunteering at the hospital got me thinking that maybe people needed a real hero, living their life to its fullest while managing epilepsy. This led me to write “Epilectra,” the graphic novel series about a superhero with epilepsy who transforms her disability into a super ability. Epilectra can channel the errant electrical activity in her brain that causes her seizures through her fingertips as lightning. She also forms and leads Team SEEZ (Support & Empower Everyone Zealously), derived from the original pamphlet I created. In the novel, Team SEEZ is for superheroes with different disabilities who turn their disabilities into superpowers. The characters introduced have type 1 diabetes, autism, cerebral palsy, and endometriosis.
Being diagnosed with epilepsy was probably one of the best things that have ever happened to me because it led me to write “Epilectra,” which is my life’s calling, passion, and superpower!
Reviewed By: Sara Wyen