With 5 days left to go until I hear the answer, I've been reviewing some of the things I've done to apply, including my autobiography I wrote. In place of another post, I thought I'd add page three of that autobiography: my life with epilepsy.
Epilepsy is something I rarely talk about here, partially because I feel my condition is controlled enough that it doesn't affect my life. The other reason is because I consciously ignore it. It is my one weakness, my Achilles Heel, and it's the one thing about my life I wish I could change. As I continue to find my place, I continue to find a place for my seizure condition in my life.
There are times in my life where I feel I’m looking at the world through a plastic bag. The view is distorted, hazy, and I am not quite sure where I am or even who I am. My body is sore as if I’d run a marathon. I see faces surrounding me; I feel like I’m inside a huddle and everyone is discussing the next play. I’m asked such questions as “Do you know where you are?” and “Tell me your home address.” It takes a while before I can answer. I have to re-learn how to talk. I want to answer, but that veneer fogs up my memory, and I can’t answer with any certainty.
It’s not a dream, nor is it a drug-induced experience. It’s me after I wake up from having a seizure.
When I was 15 years old, I experienced my first seizure. As my doctor tried to explain it to me, I was still in a form of shock. What did it all mean? I was now some sort of handicapped person? Was there a cure? Mom and I were clueless about the condition. To this day, she feels bad for going out and buying a tongue depressor, believing the old myth that a person having a seizure can swallow their tongue.
While my mother handled it in her own way (starting the Epilepsy Support Group of West Michigan, becoming Volunteer of the Year from the Epilepsy Center of Michigan, and receiving an award from President Bill Clinton), I realized I had to handle this in my own way. I was no good at talking about my feelings; I had no desire to “share” how Epilepsy had changed my life. I was a teenage boy with rebellion and testosterone raging through his body, now living with a condition that would restrict what I could do. I decided to put myself to the test.
I was told not to drink, not to stay up late, not to do all the things teenage boys like to do…yet I did them all and with much gusto. I was on a path to prove to the world I didn’t need to conform to any doctor’s recommendations. This condition wouldn’t keep me down. Every bad situation for a person with Epilepsy, whether it was high at 6AM in the middle of a cornfield or driving 90mph down the freeway, I’ve done it. I wanted to prove something to myself. In the end, I think I proved myself wrong.
While I did succeed in breaking many of those risks, I began to have breakthrough seizures in the most embarrassing places. At work, in school, in front of friends and family…the people I was trying to show I could not be beaten experienced the first hand witnessing of an epileptic seizure. It scared a lot of them. It scared them so much; I could see how they felt bad for me. I didn’t want to be pitied, so I rebelled even more.
As I grew, I realized life wasn’t about how others perceived me. Whether I was the popular guy or just the quiet guy, I’m just another guy that has Epilepsy. Perhaps that’s why I don’t worry about any “stigma” of pursuing a vocation. I’ve already learned that the best way to handle a huge change in life is not to lash out and let your ego vindicate you in the eyes of others, but to look inside of yourself and deal with what you fear. For me, it was the loss of control. Because of the seizures, I can lose control when my meds aren’t taken. This is a part of my life, and something I have come to terms with. Most people don’t even know I have the condition because of my rarity of seizures.
I continue to take Dilantin for my condition, and will do so for the rest of my life. As a kid, I dreaded the idea of having to do something to prevent severe bodily harm or even death. Today I’m happy that science has a remedy for Epilepsy, otherwise I wouldn’t have been able to experience as much of life as I did.