When being diagnosed with an illness or disease, the biggest desires you have are simple: answers and solutions. What I’ve realized in the years since being diagnosed is that epilepsy often doesn’t come with either of those things.
Since my initial diagnosis, I was told that there is no reason why I have epilepsy. It may have been while my mother was pregnant, a fall, an illness, a fluke. They didn’t know and there was no way to find out. It was a tough pill to swallow after being told I had a neurological condition with no cure. They told me that most people were like me: they didn’t know why they had epilepsy, they just do. That soothed me, if only to know I wasn’t a medical mystery. But it also lead to a period of time where I was constantly questioning what may have caused me to have this disorder. Why me? What happened to my brain that caused me to have this? What will my life be like now?
For the first weeks after my first Grand Mal seizure, I was terrified to go to sleep. I was afraid to be alone for any period of time. What if I had a seizure at school? What if I had a seizure walking home? Making myself food? Doing laundry? Watching TV? While going to bed? I didn’t know if my head was a ticking time bomb. At that time, we had yet to do additional testing to figure out the nature of my seizures. I had an MRI done the first day, which was normal. But there was still infections to test for, additional MRI’s, EEG scans. So at that point in time, I had no idea if the seizure was a one time event or if this was going to be how it was for the rest of my life. The big milestones I had imagined now seemed impossible: getting my license, going out with friends, school dances, parties, graduating high school, going away to college. I was in eighth grade at the time and didn’t know if the things I had been looking forward to for so long were now going to be vastly different from everyone else’s experiences.
I was scared. But I was also angry. Really, really angry. Why me? Why did this have to happen now? What did I do to deserve this? I was going through a large period of change in my life and now this was thrown into this mix. The stress of an unknown possible disease. It all seemed like too much.
It’s been eight years since my first seizure and yesterday I was in the hospital again. I woke up to a terrible migraine on the right side of my head, all the way down to my neck. I knew that it was going to be “one of those days”. I called out of work, took some ibuprofen, and went back to sleep. Eight years ago, on a morning in March, I woke up with a headache, was delighted to find out we had a late start, took some ibuprofen, and went back to sleep. It was eerily similar and I felt it.
And it took me back. All the emotions of me, as a fourteen year old girl, seemed to flood back. The fear and anger and frustration. I sat in the Urgent Care, a twenty-two year old woman now, thinking of how even after all this time, there’s still so many unanswered questions. I don’t know why I have this and most of the time, no one can see it. I wish I could go back and tell myself that it’s going to be easier down the line, that someday you won’t have to worry about having a seizure somewhere, about medications, about people worrying about you. But I can’t do that. Not just because I can’t go back in time, but because it just isn’t true. Maybe in another eight years, I’ll be able to know the answers to the questions I can’t answer yet. But for now, this week, I feel a little bit like how I did eight years ago; frustrated, searching for answers, and wanting life to be a little simpler.