‘Epilepsy Diagnosis Hit Me Like a Ton of Bricks’

By Carter I.

Victor Senior High School Carter I. was diagnosed with absence seizures, a form of epilepsy, after 18 years of age.

Senior year at Victor Senior High School has been exciting so far. I’m Carter I., a 18-year-old who’s enjoying every moment of it. My mom always says I’ve got big dreams of becoming an entrepreneur. I guess she’s right. I can totally see myself owning a gym someday. Staying fit and healthy is a huge part of who I am.

Life hasn’t exactly been a smooth ride for me and my family, though. Things took a scary turn when I was diagnosed with epilepsy back in third grade.

I remember my mom noticing my eyes fluttering behind my glasses. We thought it was a vision problem until the eye doctor referred us to my pediatrician, who then sent me straight to a neurologist.

That’s when it hit us like a ton of bricks — I had absence seizures, a form of epilepsy.

The journey since then has been a rollercoaster. Medications, countless doctor visits, and even enduring 24 seizures in 24 hours at one point—it’s been tough. But I’m grateful that for the past two and a half years, I’ve been seizure-free.

Back when I was first diagnosed, I didn’t want to talk about it. Seizures were this scary, taboo thing. But I’ve come to realize they’re just a small part of who I am. Camp EAGR played a huge role in boosting my confidence and changing my perspective. It was a turning point for me.

Camp EAGR isn’t just any camp; it’s specifically designed for kids aged 8 to 17 with epilepsy and their siblings. It’s part of EPI (Empowering People’s Independence).

One of the best things about it was that I didn’t have to miss out on any activities. With trained staff and a neurologist on site 24/7, we could do things we’d normally have to sit out of due to our epilepsy diagnosis. It felt liberating to swim, go horseback riding, and even try zip-lining—just like any other kid. Having the neurologist there around the clock gave my parents peace of mind. They knew I was safe and well taken care of.

At camp, I discovered I’m not alone. There are others like me, facing their own battles. It’s where I made new friends. And I am proud to say that I even became a counselor-in-training last summer.

I owe a lot to Camp EAGR and the support they’ve given me. And now, I’m eager to pay it forward by helping other families dealing with epilepsy. Who knows, maybe someday I’ll run my own camp, helping kids just like me find their confidence and strength.

Submitted by EPI. For more information visit www.epiny.org.