I was once a child with epilepsy, and it’s something a lot of people don’t know about me.
My epilepsy story is weird because it truly came out of nowhere with no explanation to this day. To be honest, because of it being a brain disorder, I don’t remember much about this time because this disorder had me feeling disorientated and forgetful most of the time. What I remember, though, is that it started around May 2003 and I was just about to finish the third grade. I don’t remember having seizures at this time, but my mother started to notice me doing this weird head moving, arms moving motion every once in awhile until it became more frequent. Every time she would ask me what was wrong, I told her I was fine because I truly thought that I was fine. The truth, though, is that I had no idea what I was doing. My mother took me to my doctor and recommended for me to see a neuro doctor. This was the start of my frequent visits to the hospital.
One thing I remember doing my time being an epileptic was that I went to this research center place with either my mother or father every single week, mainly for a check-up and blood test. When I mean I had a blood test every week, I had a damn blood test every week I visited that place. I never understood why they needed to take out so much blood from a 9-year-old, but they did, and I hated every single one of them. I used to bring doctor’s notes with me to school because these appointments would sometimes happen at 7, 8 o’clock in the morning. Shortly after they confirmed that I was having seizures through these check-ups and taking an EEG test, they put me on medication that I had to take three times a day, seven days a week. As I was trying my hardest to cope with the distraught and confusion I had as a 9-year-old epileptic, I was also trying to cope with the fact that kids my age weren’t very nice to people that “acted differently”.
Epilepsy didn’t affect the way that I socialized; I was still very outgoing and had tons of friends in my class. What made school hard was that I wouldn’t remember anything my teachers were saying to me once I was having a seizure and when it ended. It made it hard to have conversations with people without spacing out in between sentences and then asking what was I doing. Eventually, as time progressed and the seizures got worse, my friends began to mimic my seizures and poke fun at them, calling me stupid and dumb. I vaguely remember performing at a dance festival my school put on and I had a seizure in the middle of it, which was the one thing I was worried about doing during my class performance.
As the year passed on, my seizures were now lasting longer and happening more frequently, which then started to cause me to be anxious and worried all the time. I still remember my father telling me that I better hope my seizures go away before middle school because I was going to have people tease me if I did that there. I was scared that I was forever going to be “Liz, the epileptic” and not “Liz, the normal little girl.” We kept going back to the doctor and my mother kept complaining that the medicine was making my seizures worse, which made the doctor disagree and say that it has to take some time to work. To prove that they weren’t getting worse, he made me take an MRI, which the test concluded that nothing about my brain was physically wrong. At this point, nobody could tell what type of seizures I was experiencing, and where they came from (I’m the first person ever in both my family trees to experience epilepsy.)
My mother requested for me to take another EEG test, which in case you don’t know, is a test that they put all these little wires on your skull to track the activity of your brain, and then ask you a few questions and do a few activities to enhance a seizure to happen. After what felt like forever, I finally had a seizure stating my multiplication tables. They found out the type of seizures I had, gave me a new medication, and in less than 6 months, I stopped having frequent seizures. Eventually, they went away completely. They think because I was hitting puberty and the brain was growing, the disorder just vanished. I honestly still don’t know how they just went away, but they did.
Living with epilepsy was hard. After having them for a long period of time, I was afraid of doing the things I enjoyed doing most. I remember walking to school with my father when I all of a sudden I had a seizure and walked into a pole. I also remember swimming in my aunt’s pool when I had a seizure underwater and almost drowned. Because these seizures kept having in unexpecting times, I had to be watched almost all the time. My teachers had to be informed that I had epilepsy, which made me feel like more of a sore thumb when they would pull me outside to ask me if I was feeling alright. There have been so many times I visited my school’s nurse that we could’ve been on a first name base. Long story short, my life as a 4th-grader was hard because of it, but I know it’s a part of me I never want to forget.
It’s weird; I’m always asking myself why do the weird things happen to me. My two front baby teeth were rotten, I had a chipped tooth that turned into a snaggle tooth, and I got my gallbladder removed when I was 19. But hey, maybe I’m supposed to be learning something about all of this stuff. Maybe it’s helped me get thicker skin. Maybe it’s made me stronger.
Maybe it’s made me realize that even bad things shape you to be the person you need to be. I know this has, and many other things I’ve dealt with.
-Liz (:
Letters From Liz. 