Diagnosed With Epilepsy at 16: How I Found My Voice and Purpose
Joseannie Martinez empowers kids with epilepsy to advocate for themselves through her children's books.
I had my first seizure when I was 15. I woke up to paramedics standing in my bedroom, and everything felt confusing and surreal. At the hospital, I learned it had been a nocturnal seizure—one that happens during sleep. Because it was my first, the doctors didn’t say much, and I was sent home without many answers. A few months later, after I turned 16, it happened again. That’s when I was diagnosed with epilepsy. I remember feeling shocked and confused. I didn’t think something like this could happen to me, and at the time, I knew very little about epilepsy. I was prescribed levetiracetam (Keppra) and referred to a neurologist, beginning a journey I hadn’t expected.
Living with epilepsy during high school changed a lot for me. I had to adjust how I participated in certain classes, and I was completely excused from gym, which was difficult to accept. I also struggled with low energy and often had to leave class throughout the week.
As I learned more about my condition, I began to notice gaps in how epilepsy is explained to young people. There isn’t always enough focus on helping children and teens understand triggers and medication side effects. It can be difficult for young people to understand what they are experiencing without clear, age-appropriate information. That’s why I was inspired to write my first children’s book, Lucky Feels Fuzzy. Lucky is a kitten who has epilepsy. In the story, he describes that the seizure makes him feel fuzzy.
I chose to use cats as my characters because animals can have epilepsy too. Seeing an animal go through a similar experience can help make something complex feel more approachable and less frightening for kids.
I also include my commitment to diversity, equity, and inclusion in my books. Lucky has a black dad and a white mom. He isn’t defined by a specific background—he is simply a character who wants comfort and care during his seizures. My goal is to create a character that feels relatable to children of all backgrounds.
Advocacy has become another important part of my life. I use my social media platforms to raise awareness about epilepsy and share information, and I attend events whenever I can to connect with other advocates. For teens and young adults who are interested in advocacy, my advice is simple: use your voice, whether you are speaking for yourself or for someone you care about. I believe this will lead to more research, better care, and less stigma. That sense of progress gives me hope that things will continue to improve for everyone living with epilepsy.
