Finding Community in Camp

I am 19 and I have focal onset awareness seizures. I was diagnosed with epilepsy when I was 6 months old. Throughout childhood, I would have one a couple of times a month. I had one on my 10th birthday, and I had a couple when I was in elementary school. As a child, my seizures weren’t as controlled as they are now. Once I matured, my seizures started becoming very controlled. 

I was seizure-free for five years when I had my first EEG in 2021 to see if my seizures were controlled enough to stop taking medication. Sadly, the doctors said no. I continued not having any seizures until October 2023. I was at a coffee shop in my neighborhood when I had one and stayed at home alone. I sat in my chair waiting until it was over and then walked home. Since it was my first seizure in 7 years, I felt very disappointed! I had gone for so long without having seizures. 

However, ever since then, I have been seizure-free! I was taking the highest dose of my medication when I had my most recent seizure, so I’m currently going through a medication change. I have lowered my original medicine dose and am taking a new one with it. So far, I haven’t had a seizure, which was my biggest fear about doing a medication change. I wondered how many seizures I could have in any given day, week, or month, but thankfully it has gone smoothly. 

I have never been extremely open about having epilepsy, except with the people that I’m close to, or I know well. I have always had the fear in the back of my mind that if I tell someone I don’t know very well that I have epilepsy, then they’ll define me as “the girl with epilepsy.” I wanted to share my story because I know there are people out there who have epilepsy and feel extremely lonely living with this condition. I want people to know that they aren’t alone and what it is like living with this condition.

I was a camper at Camp Never Give Up when I was 14 through 17. When I got to camp my first year, I looked around the room, and I never knew so many people had epilepsy. I felt so alone living with epilepsy until then. I was 18 when I became a camp counselor for the same camp, and I have loved every second of working there.

I may have epilepsy, but epilepsy doesn’t have me. Never let epilepsy win. You’ve got this!