From Epilepsy Advocate to Author – How Advocacy Shaped a Life of Writing
Updated: Mar 20
Written by Joseannie Martinez Author and Advocate
Joseannie Martinez is an Afro-Dominican and self-publishing author from Paterson, New Jersey. In 2020, she launched her Instagram account @lightlyepilepsy to shift the narrative, destigmatize epilepsy, and provoke conversations.
I was fifteen years old when I had my first seizure. I woke up to paramedics standing in my bedroom, confused and dealing with a terrible migraine. At first, I thought they were there for someone else until one of them said the words that changed my life: 'You had a seizure.'
I had never experienced anything like that before. My family and I were left wondering how it happened and why. A few months later, after I had turned sixteen, I had another seizure and was officially diagnosed with Temporal Lobe Epilepsy. I was prescribed Levetiracetam (Keppra) and suddenly had to adjust to a new routine of daily medication and medical tests.
The diagnosis was difficult to process. Before epilepsy, I was focused on school and my future. I was in a medical arts program in high school because I had always dreamed of becoming a doctor. Even though I understood what seizures were, I didn’t fully understand what epilepsy meant for my life.
I tried to keep living like a normal teenager, but epilepsy made that challenging. I often had to leave school early because I wasn’t feeling well and was excused from gym during my junior and senior years. My medication also affected me physically, and being in the sun could sometimes trigger an aura, a type of focal seizure.
Even with these challenges, I kept pushing forward. After graduating from high school, I attended trade school and became a dental assistant. I started working just before my twentieth birthday and discovered that I loved the hands-on experience, especially taking dental X-rays and assisting with procedures.
Over time, living with epilepsy led me to something unexpected: advocacy.
After years of navigating the condition, I began sharing my experiences online. I spoke about seizures, the emotional side of living with a neurological condition, and what I was learning about the brain and nervous system. Connecting with others in the epilepsy community helped me better understand my own journey and showed me how many people were searching for support and understanding.
The more I advocated, the more inspired I became to help others—especially children who might be experiencing seizures for the first time.
That inspiration led me to fulfill a childhood dream: becoming an author.
My first children’s book, Lucky Feels Fuzzy, tells the story of a kitten with epilepsy who experiences an aura and receives comfort from his parents. The goal of the book is to help children understand seizures in a gentle and comforting way and remind them that they are not alone.
After publishing the book, I began hearing from parents and members of the epilepsy community who said the story helped their children better understand what seizures feel like. Many families shared how meaningful it was to finally have a children’s story that explained epilepsy in a relatable way.
Those conversations made me realize there were still other parts of the epilepsy journey that could feel confusing or scary for children, especially medical testing.
Living with epilepsy often means regular doctor visits and neurological tests. One of the most common tests is an Electroencephalogram, also known as an EEG, which records the brain’s electrical activity.
That realization inspired my second book, Lucky’s First EEG. In this story, Lucky returns to help children understand what an EEG is and what they can expect during the test. Just like my first book, the goal is to replace fear with understanding and help children feel more comfortable with the medical experiences that often come with epilepsy.
What began as one of the most frightening moments of my life eventually became a purpose. Today, I continue advocating for epilepsy awareness while using storytelling to help young readers and families better understand the condition.
My journey with epilepsy didn’t end with a diagnosis, it helped shape the path that led me to become both an advocate and an author. Both books are available for purchase on Amazon.
Read more from Joseannie Martinez
Joseannie Martinez, Advocate and Author
After being diagnosed with epilepsy at 16, she dreamed of writing children’s books inspired by her own experiences to help others. In 2022, Martinez published her first book, 'Lucky Feels Fuzzy'. The story features a character with epilepsy and serves as a self-help resource for young readers, teaching them how to express their symptoms and advocate for themselves. By including cats of various colors, she also promotes inclusivity and highlights that epilepsy can affect both humans and animals.
