This is the story of how the diagnosis of epilepsy affected my life. For anyone going through denial and/or depression caused by this disorder, I hope that this story gives you a glimmer of hope...
I have it. There's no living in denial about it anymore. No more pretending to take my Depakote and then flushing the pills down the toilet - wasting the overly-expensive medication because my seizures aren't that bad. I can no longer tell myself "maybe I can control it" or "maybe it's just stress". There will be no more experimenting with energy drinks, watching flashing lights, and purposely sleep depriving myself to test my limits. I have come to the realization that I'm not just a twitchy person and that this is not just a phase. This is a serious medical disorder called epilepsy, I do have it, and I finally need to learn how to live with it.
I was 16 and had just received my learner's permit the day before - having received the highest grade in my driver's ed class. That's when the telephone rang. It was my primary care doctor who I had recently complained to about these "episodes" I'd been having. She had the results of my first EEG (the first of many more to come). "Abnormal" - that's the word she used. Tell me something I don't already know about my brain, doc. Yes, I am indeed abnormal and quite proud of it too. However, it was the next few words she used that started a panic within me that would last for years."Seizure activity....Epilepsy."
"Stay away from flashing lights" she said. "Avoid caffeine. Don't stay up too late. Don't go swimming by yourself. Don't drive." I hardly knew anything about epilepsy and seizures at the time. Seizures are when people fall to the ground and convulse, right? That couldn't be what was happening to me. Sure, my arm or leg jerks here and there. Yeah, I tend to stare off and become unresponsive for a minute or so. And maybe I feel "weird" every once in a while. But, that's normal isn't it? I mean, I've had most of those symptoms -if that's what you want to call them- for as long as I can remember. And the nerve of this doctor, telling me that what I thought was normal is actually a serious disorder and then giving me a list of things I can no longer do.
I've never been one to take kindly to limits. I've always hated the way our society tends to put labels on people - gay/straight, skinny/fat, black/white. So, the idea of being labeled "epileptic" and put into a box full of bubble wrap simply disgusted me. I'm a thrill-seeker. I'm the first in line to ride the scariest roller-coaster. If I were limber enough to be a tight-rope walker, I'd have joined the circus by now. No, this is just a temporary set-back, a phase, some weird side effect of puberty that I will surely outgrow. I'm perfectly healthy. I can do whatever I want.
My close friends and family didn't hesitate to show their support in this shocking new diagnosis. "You'll get through this" they said. Get through what? I'm fine. "She's taking it very well" I overheard my mom say on the phone. But I wasn't taking it well. In fact, I wasn't taking it at all. Behind the brave facade that I tend to put on during every crisis, I was building up a wall between me and my health. On one side, I was carefree and ready to take on anything. On the other, I was terrified of losing control. I decided to hide this disorder and my fear of it from everyone. I decided that it wasn’t a part of who I am.
Violently twitching in public, long and unexplained absences from school, attempting to walk and talk while high on anticonvulsants, and the constant bruises from blood-work or thrashing my limbs about - what must my peers think of me? “Heroin addict. That explains the bruises on her arms.” It was perfectly logical. “I always knew she was weird, but did you see her twitching? What a spaz.” Anyone who doesn’t know about neurological disorders would think that. “She gained a lot of weight and had to leave school. I bet she’s pregnant.” Another reason why I refused to take Depakote - the horrendous weight gain. But I stayed behind my wall of denial, pretending not to care.
Years of toying with my seizure threshold and continuous denial even when the seizures got worse finally took its toll. The lowered dopamine levels thanks to that wonderful drug, Depakote, combined with the pressure of everything began to manifest into a deep depression. That wall I had built up to shut my epilepsy out of my life began to shut other things out too. I couldn’t tell my family and friends. They think I’m strong. They wouldn’t understand. The side of the wall I was living on became dark because I had blocked out the light. It was so dark that I lost sight of myself. I looked to others to try and figure out who I was. I was willing to accept any adjective but epileptic. Quiet. Shy. Sad. These were the new words I used to describe me.
I took to heart everything that people said about me, even the negativity - especially the negativity. All I that I let in was negative and so when I tried to figure out who I was again, all I could find was negative too. I’m lazy. I’m a failure. I’m fat. I’m awkward. I’m stupid. But I’m not an epileptic! I refused to accept that I had epilepsy and that it was a part of me until I overheard my father speak the words that have since never stopped replaying in my mind. “If only I had a normal daughter. My daughter is defective. She has epilepsy.” That was it. The wall came crumbling down. My epilepsy swirled into the dark abyss that was my identity. It was another negative. I am defective. I have epilepsy.
I know now that the words of my father only prove his own defectiveness. At the time, I was conflicted between the feeling of being unloved and shamefully thinking that he must be right. I had felt that way towards myself and hearing him say it only confirmed it for me. I went from denying that anything was wrong with me to constantly saying it to myself. There is something wrong with me. I am not normal. I am defective. I have epilepsy. My father doesn’t love me because of it and neither do I.
This new identity I had been given took me even deeper into darkness. Still ever so much the thrill seeker, I flirted with death. Alcohol, pills, inhalants - becoming the drug addict that people once thought I was. Maybe I drank too much wine and took too many Xanax. I didn’t care. Maybe I inhaled way too much from those aerosol cans. For a brief moment, it stopped the negativity in my mind. It made me forget who I thought I was. I didn’t even care if it killed me. I had my just-in-case suicide note already written.
The dark cloud I had hovering over me became noticeable. My loving mother was probably the first to see it. Her maternal spidey-senses told her that something was wrong with her child. I wasn’t the quirky, happy, and passionate girl I once was. I used to be able to see a sunset and cry because it was so beautiful. Instead, I saw grey skies. I felt nothing. No color. No beauty. My true self was dead and so was everything else around me.
Medication, cognitive therapy, support from my mom - little by little, glimmers of light began to shine through the darkness. I learned how to remove the dreadful labels that I had given myself. Just because I don’t have energy, doesn’t mean I’m a lazy person. Just because I failed a class, doesn’t mean I am a failure. Just because I have epilepsy, doesn’t mean I am defective. It was time for me to start thinking rationally. It was time for me to start seeing in color again.
I began to remember who I once was and started to embrace it. I am a nerd, not because I’m a social outcast or anything, but because I have a lust for learning. I am artistic and have a passion for creating. I am empathetic and non-judgmental because I know that there is a reason for everything. I am stronger than I realize. I am epileptic and that is okay. I am weird, but in a good way. And of course, I am abnormal and quite proud of it too.