BENEFITING: Epilepsy Foundation
EVENT DATE: Nov 21, 2015
When I was 4 1/2, my mom noticed that something was wrong with me. Sometimes, it seemed as if I couldn't hear her. She decided to take me to the pediatrician, and after several tests showed that my hearing was fine, the doctor concluded that I was just ignoring everyone -- I was just "being a kid." Then one day, it happened while I was at the pediatrician's office, and that was how he was able to diagnose me with absence seizures (at the time, they were called petit mal seizures; A neurologist I spoke to recently told me that my probable diagnosis today would be Childhood Absence Epilepsy). I will admit that I don't remember much of these moments in my childhood. I remember staying up late with my dad watching I Love Lucy and Taxi re-runs, so that I would be sleepy enough for an EEG test. I remember when my meds caused a zinc deficiency and chunks of my hair starting falling out. I remember the subsequent haircut, and one child at school getting mad at me because she thought I was pretending to have cancer. I remember at that moment deciding that I could never let anyone know what was going on, because no one would understand. One of my teachers assigned a student to be my "buddy", which I'm sure she thought would help me (and would help her keep an eye on me if I had an episode), but it was just embarrassing. I was lucky that the girl assigned to me never made me feel badly about the arrangement. I was probably pretty clingy to the few friends I did make, which was why eventually, I stopped having very many friends. I was defensive, even when others were trying to be nice to me, because I didn't trust anyone anymore. I probably needed counseling, but I absolutely refused any help, even when it was suggested by my parents. I was a very lonely kid. Because I was unconscious during my episodes, and didn't experience any warning signs when one would occur, I felt like I was just missing chunks of time -- I felt like a perfectly "normal" kid, and I wanted to be treated like one. But I was taking 12 pills of Depakote per day at my peak -- to say that I had an uphill climb would be an understatement. When I look back on it, I had some pretty high standards for the adults in my life. I disliked my neurologist because he talked to me like I was a little kid. I started seeing him at age 5. I was a little kid. What was he supposed to say? I stopped having seizures at age 12, and stayed on meds until about 13, when it was determined that I had grown out of my seizures. Since then, I haven't had an episode. And while, as I mentioned previously, there's not a lot that I remember from this period of my life, I do remember knowing as an adolescent that I wanted to help others. So here's my message: My way of dealing with epilepsy was completely wrong. I wanted to hide that part of myself, because I was sure that revealing any part of my struggle would just lead to more embarrassment, bullying, and condescension. But what I've found as I've gotten older is that the world is filled with good, supportive people. While there may always be someone there to hurt, there are many more who are helpful, and no one deserves to fight any battles alone -- no matter how worthless they may feel. I'm running in November because, while I've told people about my epilepsy, I've never really been open about the struggles I had with depression as a result of the isolation from my peers. I often felt that, because my epilepsy was not severe or life-threatening, it was not worth talking about. I thought I "had it easy", and that I should just be grateful and stop feeling sorry for myself. Depression is not easy. Epilepsy, in whatever its presentation, is not easy. And if my children were to have epilepsy, I would want them to feel safe enough to talk about it, without worrying about stigma.