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08/25/2004: "Epilepsy"

This is going to be really boring, its just a narritive thing about my experience with Epilespy.

I have epilespy, Ive lived with it for 5 years that I know of. My first recognized seizure was at the kitchen table, while I was playing a game of sorry with my family. I hit my knee on the underside of the table. For most people, this would just make them emit an 'owww', for me, it knocked me unconscious and made me shake. My mother called 911. My step father knew what it was, but at the time, didnt tell my mother what it was. (why? he didnt want to be wrong and scare her) When I woke up, I heard my mother talking to the person on the telephone. I begged her not to make me go to the hospital, I was so scared of doctors. I told her I simply fell asleep, and she didnt make me go.

Later that year, I was in gym class playing frisbee when I was hit from behind. The person that hit me got up and walked away. I was unconscious on the ground for about a minute. The students ran to get the gym teacher, but I got up by the time he got back. No one knew what had happened, myself included. Everyone except a girl named Christain Peele. She was the smartest girl in our class. She asked me while I went to get some water, 'did you have a seizure?'. I told her no. I thought only freaks and people who had messed up their minds had seizures.

I was fine, until one day I was riding a bike. My heel scraped on the pedal of the bike. I dont remember falling. I just remember waking up with my stepfather (whom I now call my father) above me. I was taken to the hospital later that evening. I had experienced a grand mal seizure. The doctors figured it had been caused by my reaction to pain. Possibly a lesion on the brain in the area that pain/touch is associated with. A CT scan ruled out the possibility of a lesion. The doctors couldnt exactly pinpoint what caused this.

I was sent to a neurologist for an offical diagnosis. He preformed an EEG (the oddest experience ive ever had with a medical procedure) and he agreed I had a seizure. However, he believed I would grow out of it, so he prescribed no medication. That was until I had another seizure, which convinced him I needed anticonvulsants.

I started on a medicine called phenytoin. I have never had side effects so bad (until recently) in my life. I continued to have seizures. All the while, I was fearing I would have one at school, and have people know what it is. By this point, I am in a new school, in a whole new place because we have moved. I dont want to be treated like a freak. I was fortunate, I never had to face it in school until...

My teacher posted a notice that had been given to him on the bulliten board. It had my name on it. It had that I had a seizure disorder. Talk about being mortified. I got looks from people at lunch. They stayed away from me. I even got told I was a freak, which made me cry. Also, I couldnt take PE anymore, because of the pain induced seizures as I came to refer to it. Not only that, I had the PE teacher ask me in front of everyone 'do you have the grand mal seizures?' and of course I had to respond. I was very embarrased, and I was determinded to hide my medical condition from then on.

I moved again, and this time I didnt tell anyone I had seizures. No one at school, not even the teachers. I did not want anyone to know. I didnt have a seizure until the following year, but it wasnt at school. More medicines, more bad side effects. This time, no pain was involved to trigger the seizure. It was pure emotional stress. My nana had died. I had just met my biological father for the first time. Too much stress.

More seizures in between. But...after a year and a half (or was it two?), the doctor said I had grew out of them, and I could stop my medicines. So I did. I was very happy. No more rotton side effects. No more worry.

However, on June 16th, 2004....that changed. I was on my way to work when my foot once again slipped and hit the pedal of my bike. However, unlike my previous experience, I wasnt wearing a helmet and I was going fast. I dont remember falling, I dont remember the ambulance. I do remember kicking some man. I was in the ICU for 3 days with a brain bleed, and in the hospital for 3 more days for observation. My meds were restarted, side effects included. Has to be my worst seizure experience.

Then the dealing started over, yet another move. More side effects, (worse, because I was also on birth control and had to take a high dose for it to even work), and just bad. I also had side effects from the brain bleed. Dizzyness, nausea...the works. But the real reason I wrote this was to remind myself what I have been though, I have had yet another experience today.

Ive admitted to people freely that I have epilepsy. That is a big step. Ive realized I will never 'grow out of it', its here to stay for a long time. It is apart of me, and I freely admit that. Not afraid to let people know. I want them to know about seizures, not be afraid or ignorant of them. Or have any person with epilespy hear the words 'you are a freak' if I can help one person to understand.