Epilepsy Is Not the Whole Story

When I was two years old, I was told I had tonic-clonic seizures. Being so young, I didn’t really understand what was going on, but my family did. My parents carried all the fear and worry, always watching me. Growing up, epilepsy was something that followed me everywhere, and having it my whole life hasn’t been easy. From countless EEG tests to trying new medicines, it often felt like my whole childhood was filled with routines that none of my friends had to deal with.

There were so many times when I just wanted to be like everyone else, free to run around without someone standing close, ready to help me if I had a seizure. When other kids were laughing and playing on the playground, I sometimes noticed adults keeping one watchful eye on me. Now I know they were just worried about me, but as a kid, it felt heavy. It made me feel different in a way I couldn’t shake.

Taking seizure medications was a struggle. The doses kept changing, the side effects were tough, and I had to keep trying new ones to see what might work. I’ve tried all forms of medications, including liquid and capsules. Growing up with epilepsy made me feel out of place a lot of the time. I wished I could live like other kids who didn’t have to think about these things. I wondered if I would ever feel “normal.” Sometimes I felt like epilepsy stole my chance to feel like a regular kid. That thought made me angry sometimes, and other times it just made me sad.

But as I got older, I started to see things differently. I realized that while epilepsy is part of me, it doesn’t define me completely. Yes, it shaped my life and sometimes stopped me from doing certain things, but it also gave me strength I didn’t know I was building. I learned how to keep going when things were hard. I learned patience from sitting through all those appointments and waiting for new medicines to hopefully work. I also learned empathy, because I know what it feels like to struggle quietly and feel misunderstood.

Thinking back on everything I went through to get to that point, I felt overwhelmed. I thought about all the times I wanted to give up, all the times I cried, and all the moments I felt alone. And then I thought about the people who stood by me through it all. My sisters, Emma and Sofia, were two of the biggest reasons I made it through the hardest times. They were always there to cheer me up, to make me laugh, and to remind me that I wasn’t weird or broken. They saw me for me, not just my epilepsy.

So, to Emma and Sofia, I want to say thank you. Thank you for watching movies with me when I had to rest instead of going out. Thank you for reminding me that even when I felt different, I was still loved. I don’t think I could have made it this far without you both.

You’re not weird, you’re human. Having epilepsy is just one part of you, not the whole story.