My name is Adam and I am 26 years old. For me, epilepsy has played a big role in shaping out the perception I have on life. I still like to stay active in the Chicago area whether that’s hanging out with friends, performing music and improv, or collaborating with others on new projects. But, there are many times I fear my epilepsy has created a wall between my confidence and my pursuit to follow through with these things.
I was first diagnosed with epilepsy around the age of 3. My parents weren’t entirely sure what to make of that and neither was I. As I grew up it always seemed to be the strangest times I would black out and have a seizure. Almost all of my seizures have been tonic-clonic. It would happen during gym class at school. It would happen at home when I was watching TV. It would even happen occasionally when I went on camping trips as part of the Boy Scouts of America. Nobody really knew what was causing them and neither did I. What could be triggering my seizures?
That is a question I’ve thought about for as long as I can remember. I’ve visited multiple neurologists and tried many different medications. I was under the impression that if I just found the right medication my epilepsy would be like a great magic trick and disappear. Unfortunately, that hasn’t been the case. I will never forget the time I blacked out right in front of my apartment and fell onto the cement. Someone saw me while I was blacked out and I was taken to intensive care with multiple skull fractures, bleeding and swelling of the brain, and was given a breathing tube. This went on for 48 hours. When I woke up I answered questions in a post concussive state. The first thing I saw waking up was one of my closest friends, but I hardly knew the answer to any questions the doctors asked me. I couldn’t recall the names or relationships of anyone (including my parents) and the only answer I knew was my birthday. The doctors then told me that I would be going through a month of physical rehab in the hospital. As reluctant to do that as I was at the time it was clearly the right thing to go through. Having that seizure left me scared of how others were now thinking of me. My experiences when waking up from seizures have seemed to not only leave me with a dark memory of the situation, but a feeling of complete embarrassment and the idea that I will now only seem like a total health hazard to the people who witnessed it take place.
As I’ve gotten older I’ve learned this is not the case at all. It isn’t wrong to have a seizure, seek medical attention, or to be diagnosed with epilepsy. In fact every 1 out of 26 people in the world is diagnosed with epilepsy. It’s not as uncommon as many people believe it to be. For that I wish there was more time spent learning about it in school.
I’m glad now that my seizures seem to be less frequent than they were when I was younger. This is in part to my current medication and medical cannabis card which have both certainly helped. I’m also incredibly thankful for my family and all the people I know for being supportive during the times that I felt I really needed it. It is now my goal to meet others with similar conditions, and for them to understand through all of the pressure epilepsy may bring there will always be others in the world that care and want to help us out. I wish there was an instant fix for epilepsy. I truly do. But, to share our stories and lend each other a hand through all of this is the greatest fix we can really ask for right now.