What it was like to grow up with a rare form of epilepsy

It took seven years for a doctor to correctly diagnose me. Seven years of constant doctor’s appointments.

Myself at age 8, having an EEG brain scan done. Photo courtesy of Julie Schaffer

Seven years of questions with no definite answers. It was always known that I had epilepsy, just not what kind. Nothing seemed to ever add up. I was even metaphorically compared to a puzzle with many missing puzzle pieces at one point by my own doctor.

I was just 8 years old when I was first diagnosed with epilepsy. I did not show signs of your “typical” epilepsy case where you would seize uncontrollably on the floor, I had what were called “absence seizures.” These are the kind of seizures where if you are not a specialist, you most likely would not be able to detect. I had them pretty much constantly throughout the day, so other than zoning out randomly in class, they really did not have a great effect on me because that was just my “norm.”

It was not until I was 9 years old when I had my first “big” seizure. My older sister Alayna was babysitting me at the time while my parents went out to celebrate their anniversary. I was watching a YouTube video over my sister’s shoulder when I suddenly lost consciousness and collapsed on top of her. Thirty seconds later, I woke up terrified to find my sister standing in front of me in complete shock. This will continue to be one of the scariest moments of my life, because from this point on I realized just how serious having epilepsy really was.

Throughout my journey with epilepsy, in addition to my constant absence seizures, I had a total of five “big” seizures. By the second time one of them occurred, I automatically became a risk, which would change everything.

From this point on, I could no longer take a shower alone in the bathroom. With the fear of me possibly passing out in the shower and no one knowing, someone had to sit in the same room as me every time I showered. You could imagine a pre-teen going through a lot of changes would not enjoy this.

I had to wear a medical bracelet everyday that said I had epilepsy, in case I ever passed out where my friends or family were not nearby. I was often embarrassed to wear it and would hate whenever one of my classmates asked what my bracelet was for. However, my mom helped me out a lot by getting me ones that resembled a regular bracelet.

The medical bracelet I wore everyday until I was 15. Photo by Olivia Schaffer.

After passing out on a school trip to Dorney Park in 7th grade, I could no longer go on school trips without my mom chaperoning or tagging along. Although I did not necessarily mind her being there, it was never something I was used to and was never something she did for my older sisters.

One of the worst changes in my opinion was the fact that I could no longer sleep with a normal pillow. I had to say goodbye to my normal plush pillow and begin using a pillow that felt like a brick most nights. I had to use a pillow with tiny air holes in it in case I ever passed out while I was sleeping, I would still be able to breathe through my pillow. Although the idea of the pillow is genius, I did not enjoy it when I had to bring it to sleepovers or when I would wake up with a sore neck.

At the time, these little changes in my day to day life made me feel like I stood out from all the other kids around me and I hated not feeling “normal” but I have learned since then, I am one of the lucky ones. On October 7th, 2015, I went two years “seizure free” and was undiagnosed with epilepsy. Not only was I undiagnosed that day but I was finally, correctly diagnosed with an extremely rare form

Myself now (right) at age 19 living a happy and healthy life. Photo courtesy of Julie Schaffer.

of benign rolandic childhood epilepsy. I was diagnosed by a doctor I have never met before, which made me uneasy at first but I am grateful everyday that I did. If I never met Dr. Barabas that day I believe I would have been left a mystery. The only reason Barabas was able to confidently diagnose me with this rare from of epilepsy was because his own daughter was the second documented person in the U.S. with this epilepsy, and that day I became the third.

I will remember that day for the rest of my life, as that was the day I was no longer a puzzle with missing puzzle pieces.

Looking back I sometimes felt like epilepsy stole away parts of my childhood but now being a healthy 19 year old, living on my own at college, I am extremely grateful to be here. It got terrifying at times, but I would not be the person I am today without the experiences I had.