CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story TitleI will never be able to describe that wave of agonizing, anger twisted sadness, that washes over you when you are diagnosed with epilepsy, that gut wrenching helplessness you feel knowing how limited you now are. The hopelessness you feel as your independence fades away. I experienced this for the first time in August of 2012 in a local office of a well-known neurologist. Clipboard in hand, solemn facial expression...I knew I was gonna get it. It all started back a few months earlier, June. My last day of 9th grade. My friends and I had a tradition, we always dressed as awesome, and as horrific as we could, with a common theme. This year: Suits. To be honest with you all, I think this was the contributing factor...the heat, that suit sucked it all in. I had started classes around 8 in the morning, I had been feeling a little shaky, nauseous. I am hypo-glycemic so I just figured I was hungry and brushed it off. I had progressively gotten worse throughout the day, I mean, I had no control of my limbs, I was hitting people, I couldn't keep my head up, or my eyes open. It was bad, but I was only 14, and I was very stubborn, I hated asking people for help, or feeling vulnerable, but I went till about 1 o'clock like this; that’s 6 hours of this muscle spasming nauseating pain. None of my teachers, or peers said anything, though I could feel their eyes burning holes through my skin, I could feel them wanting to ask me what was wrong, I could hear them whispering. No one said anything, or helped me until 1 o’clock. My teacher asked me if I was okay, he knew me all too well, for as soon as I said no, he already had two of my friends at my side, and were dragging me down the hallway. I'm not sure exactly what happened here, I blacked out, I remember being in my stepmom's car, she was crying, just looking at me, my head was hitting the window as she drove. She didn't know what to do. We didn't make it a block from the school before she pulled over and called an ambulance. Here, I faintly remember being asked questions, like what my name was, and when my birthday was etc. I could feel myself trying to process that information, and trying to find the right words to say. It felt like an eternity speaking each single word, pronouncing each syllable carefully, taking all the time in the world. I remember waking up in the hospital, a needle in my arm, it burned, and that's what I said, and when I opened my eyes, a doctor was looming over me, I had started freaking out, telling him to get back, and just repeatedly asking where I was, and who he was (once again, in this slow, process and pronounce everything tone). When I had calmed down enough, I found myself curled in the corner, and my family all around the room, horror filled faces, eyes filled with what could either be fear, or hope. Maybe both. The doctor started explaining what had happened to me, where I was, and who he was. I had undergone about 3 grand mal seizures in several hours. When the doctor had left the room, my family asked me a series of questions, y'know, the good ole how are you’ s, are you okay's, the how you feeling's? Some wished me good fortune, said that that day was just a stroke of bad luck, that I'd be okay. I could see the doubt in their eyes though. Other had given me gifts, from the overpriced gift shop we passed on the way out. It felt funny to walk, painful and wobbly, like a baby.

This brings us to the diagnosis. August 2012. Sitting in the doctor’s office, the well-known neurologist came in. He y'know gave me the news, of course, my stepmom had started asking a bunch of questions, which of course I barely listened to, until she asked if I could grow out of this, he looked at us with misfortune, and said "that is highly unlikely Mrs. maybe if she was a few years younger, it might be possible."  My seizures had only gotten worse, I've tried multiple medications, and it took 3 years for one to finally take. Now I'm almost 19, I'm almost a year seizure free, but I still struggle with this emotionally on a day to day basis. In 2 and a half weeks, I will achieve my drives license. This is the best I've felt in a long time.

CURE epilepsy

Mekenna Drabner