Katelyn B Studio E.jpg

Katelyn makes cookies with her grandparents while wearing an EEG cap. 

I had my first seizure when I was 16 years old. We’re still not sure why, but the root doesn’t really matter that much to me. I have tonic-clonic seizures. They are a part of me, and they have shaped me in a lot of ways. I used to pretend that they hadn’t, until I realized that, in many ways, the changes were for the better.

Those first few years with epilepsy didn’t feel real. I don’t remember much about them. High school was a blur. I remember chemistry class, EEGs (electroencephalograms), and a lot of medication changes.

It felt like reality was inaccessible – like it was behind a pane of glass.

After talking to others with this disorder, I know that a lot of people with epilepsy have felt this way.

Going Out East

Only a year into my epilepsy journey, I decided I wanted to go to a university across the country – Boston University (BU). My family was living in Wisconsin at the time. I knew that maybe BU wasn’t the safest option, because of my epilepsy, but I was stubborn. I still am. What was more amazing to me is that my parents supported my decision. Without protest, they let me go, and I moved to Boston by myself at 17.

College is always hard, regardless of your situation. When you have to fight through medications and seizures to perform well, it is doubly difficult, but I did it. There are some things I regret, like not dropping my statistics course when it was clear that there was no way I was going to pass it and staying out so late that I triggered a few seizures.

But if given the chance, I don’t think I’d take back or redo any experiences I had at Boston University. I met my best friend at BU. I had two internships, one job, and did a lot of freelance writing. I fell in love with learning and with the English language. I found my passion.

Finding Creativity & Friendship in Studio E

It wasn’t easy though. The medication I was taking made me fall asleep in class, my periodic seizures were made scarier by the fact that I was alone in Boston, and I found it extremely difficult to focus. With the help of a few kind professors, my family, my friends, and the Epilepsy Foundation, I was able to make it through intact.

I contacted the Epilepsy Foundation when I was a sophomore, and they allowed me to participate in their Studio E program. Even though my family and friends have been half of my strength in this journey, the other people with epilepsy who participated in Studio E helped me more than they could know.

There is something soothing about opening up to someone who knows exactly what you’re talking about.

It’s almost impossible to actually describe experiencing a seizure, and so that shorthand is necessary when you’re trying to deal with the emotional upheaval that comes with something so traumatic. I met so many wonderful people, learned a lot about epilepsy and its types, and became a better person. I got a little perspective.

Growing with Epilepsy

Regardless, it has been hard to watch my life change so dramatically. It is hard to watch epilepsy impact my friends, family, and partners. It’s hard to know that I might never have children.

I can’t say with certainty that I’m over it. I might never be and that’s okay.

Epilepsy has taken a lot from me, but it has also given me quite a bit. On top of all the emotional maturity I’ve gained, the disorder maneuvered my life in a direction I never expected: toward writing and learning. I’m currently in a Master of Arts degree program in St. Paul, Minnesota, another city I moved to by myself. I am a professional copy editor, and I love my job. I am meeting people and slowly learning that most people have something difficult they reckon with on a daily basis. Mine just happens to be particularly inconvenient.

I can say that I am honestly looking forward to the rest of my life. I am nowhere near done with epilepsy, and I still have seizures. But I am lucky enough to have a strong, loving support system, and I know they are proud of me. More importantly, I am proud of myself.

Authored By: 
Katelyn B.
Authored Date: