Beginnings: Understanding my Epilepsy
I was nine years old when I suffered my first seizure. In the hallway of my childhood home, I was searching for some AA batteries so I could play Pokemon on my Gameboy Color. A normal day for a kid in the early 2000s.
Then, a jolt.
I forgot my name, I forgot who I was, I forgot everything about myself, my friends, and my family. It only lasted a moment–but in that timeframe–the premonition of danger, doom, and helplessness never quite left.
3000 years ago, the Babylonians believed that epileptic seizures were caused by demons attacking an individual. The Ancient Greeks believed that the cure for epilepsy could only be given by Asclepius, the god of medicine. The cure could be obtained by sleeping overnight in the temple, in the hopes that that he would appear in your dreams and cure you.
For six years, I never told my parents. In its partial forms, epilepsy is a quiet disease. Much like in mythology, my struggle with epilepsy had always felt like a spiritual one. My family went to church every Sunday, and I would stay attentive. I would listen to what the pastor had to say, and I would exercise discipline to keep my number of sins low. No matter how humble I was, no matter how many times I told the truth, no matter how many times I prayed, my demon would not go away.
By age 15, I had learned to deal with these encounters, for better or for worse. I failed a few tests in my first year of high school because I would forget my own name halfway through. I couldn’t proceed to think straight afterwards. It wasn’t fair. I finally told my doctor, bu he didn’t have an answer. We had hoped that over time it would solve itself.
Later that summer, I was sharing a hotel bed with my brother while we were on vacation in Tennessee. I woke up surrounded by EMTs. It was too bright to open my eyes. I was in the back of an ambulance when one of the EMTs says, “We’re taking you to the hospital—you just had a complete grand mal seizure in your sleep.” Oddly, I felt relieved. Everything clicked. I spent half my life questioning what my condition was, feeling guilty and ashamed for being haunted by a spirit, for being punished by some harsh god. I finally knew I had epilepsy. The tiny spells of forgetfulness and fear were just smaller seizures occurring in the left temporal lobe of my brain.
Future Struggles with Anxiety, Depression
To subdue the seizures, I was put on anti-epileptics immediately. I became angry and detached from my friends and family. A breakthrough seizure caused my doctors to put me on a maximum dosage of Keppra, which is notorious for causing “KeppRAGE.” Awesome. The seizures stopped, but I took steps to defy authority figures in my life. I was a teenager who didn’t like the cards I was dealt with. I began to detach myself from people, doing things for myself, and putting most of my efforts into self-reflection. I wrote journals in silence. I stayed in and read on weekends. I wrote music for myself and no one else. I kept a few good friends because that was all I needed.
I learned, lived, and bled with this mindset. It got me pretty far. It hardened my skin enough to get me into a good college. It was enough to make it halfway through my degree before the depression and anxiety took its toll. I was put on anti-depressants–and they helped and continue to help me–but everyday I felt like less and less like my true self. Was I Keno? Or was I Keppra, Lexapro, and Lamictal?
Last year, I graduated cum laude in English. I proved to myself that people with epilepsy and all of its inherent “side conditions” (depression, anxiety, etc.) are capable of just being…people.
I think of that nine year-old kid who just didn’t have a care in the world. All he wanted was those damn AA batteries so he could play some frickin’ Pokemon. He was beaten down in a spiritual warfare, tortured by feelings of doom, medicated into a pile of skin and bones, captured in twisters of self-isolation–but the kid came out the other side.
Some people spend their lifetimes focusing on careers, romance, money…
I only dream to rediscover who I was.
You guys ever watch Full Metal Alchemist? I’m basically Alphonse Elric, trapped in a giant suit of armor, trying to regain my old body (except instead of alchemy, I use CBD, hemp, random teas, and mad gainzz)