Finding My Strength Through Uncertainty

I was twelve years old, and the room felt dark, cold, and lonely. It felt like I had left my body; everyone else was moving in slow motion. Then I heard this fuzzy static noise, like a TV on a lost channel. Suddenly, everything started to speed back up. I felt a jolt of energy surge through me, pushing me back into my body. It was like I had time-traveled. I was on the floor. Everyone was staring at me. My mom was calling my name. That’s when I knew something was wrong.

No doctor could tell us what was happening despite the vomiting, dehydration, confusion, and anxiety I was experiencing. I had gaps in my memory and the worst headaches and fatigue I had ever felt. My heart rate spiked to 200 in seconds, and I was passing out. It was relentless. For over a year, I had seizures and no answers.

Then, three days after Christmas 2019, a pediatric neurologist called. Two EEGs later, he said the words I’ll never forget: She has generalized epilepsy. For a second, the world stopped. I first felt relief because finally someone knew what was going on, but then I felt panic. What does this mean for my future? Will I still dance? Will people see me differently?

It’s impossible to explain epilepsy in a few words. It takes more from you than people realize, but it also gave me something. Dance became my sanctuary. It was the one place I felt like myself, where my body and mind worked together. It was where I felt normal, even if just for a little while. Even when seizures made me scared, even when my body didn’t cooperate, dance reminded me I still had control. I started to see that maybe epilepsy wasn’t just something to survive. Maybe it could be my superpower if I used it the right way.

That’s how EpiArts Alliance started. I came up with the idea, but I didn’t do it alone. My mom and two other founding members helped make it real: a place where people are included, loved, and celebrated. The FlashCue Project, which provides detailed lighting cue information for Broadway productions, came next. It was also a team effort, developed with our four founding members and roundtables of researchers. I can’t take all the credit, but part of the story epilepsy taught me is that something hard can lead to something powerful.

My family has always been my backbone. They lifted me when I couldn’t stand, reminded me that strength isn’t perfection, and encouraged me to dream bigger than my diagnosis. I wouldn’t be the dancer, the advocate, the person I am today without them.

I’ve participated in a few of the virtual Epilepsy Foundation walks. I was a proud Kids Crew member and earned my World Changer medal. Now, I am part of the Teen and Young Adults Board for Missouri, and with my recent move to Texas, I’m hoping to get connected here as well.

The Epilepsy Foundation has helped me in so many ways. It was the first place I felt less alone. Joining Kids Crew was a true game-changer. I realized there were other kids out there facing exactly what I was facing, and even better, kids who wanted to make a difference, just like me. So, thank you, Epilepsy Foundation, for creating a place where we can all go to take care of ourselves and support each other.

Keep going, no matter what. That’s something I forget sometimes or doubt I can do. Get out of bed. Brush your teeth. Take your medicine. Move your body. Do what you need to do to feel good. Don’t let yourself feel sorry for more than an hour. There’s always someone looking up to you. Keep fighting. The world is full of beauty—don’t miss it.

I remember 13-year-old me, who had never really heard of epilepsy. The unknown was the scariest part - the fog of it all, darkening the path. Once I met even just one person who shared their story, especially if it was close to mine, I felt seen, strong, and like I could do anything.

I hope this helps someone else feel the way I did. Epilepsy has taken things from me, yes, but it’s also given me resilience, creativity, and purpose. It gave me dancing. It gave me EpiArts. It gave me a voice. And for that, I am grateful.