Hello, my name is Lisa. I’m a wife and proud mother of three. My journey with epilepsy began at birth in March 1966, when I came into the world three months premature, weighing just 2 pounds 11 ounces. I was the first of four children, and my seizures began almost immediately after birth. By the time I was seven months old, I had experienced my first grand mal seizure. For years, my parents were told that my seizures were likely due to my premature birth. At one point, I was having up to seven seizures a day.

When I was around four or five years old, during a visit to the emergency room while being tested for meningitis, a second doctor was consulted. She took one look at me and said, “This child doesn’t have meningitis—she has epilepsy.” That was the first time my parents received an actual diagnosis.

Growing up, I was shy, quiet, and often afraid. I hated feeling different. In school, I was constantly falling asleep in class, and I lived in fear of having a seizure in front of my classmates. I didn’t want to be seen as the “epileptic kid,” and back then, there was little understanding and a lot of stigma around epilepsy. Other students noticed I would often leave class to go to the nurse, and the questions and judgments followed. At home, I often felt left out watching my siblings and friends play sports or swim, activities I wasn’t allowed to participate in.

Despite all this, I had a strong support system. My mom was my best friend and the rock of our family—every day after school we’d sit and talk about my day. She was always there for me. I was also very close to my dad, a hardworking man I adored and looked up to. I was definitely a daddy’s girl.

One of the hardest moments of my life happened in middle school. While standing in the cafeteria line, surrounded by students, I had a tonic-clonic seizure. When I came to, all eyes were on me. I was devastated. That same morning on the school bus, a group of students mocked me. One even called me a "freak." I’ll never forget the pain in that moment or the comfort I felt when my best friend simply held my hand. My sister, who always protected me, didn’t hesitate to defend me either—she ran after that girl when we got off the bus. The harassment didn’t stop there. The next day, another student came to my house to fight me because she had seen my seizure and also believed I was “a freak.” Again, my sister stood up for me.

Middle school was one of the most difficult times of my life. Even though I had medical notes excusing me from gym class, other students didn’t understand and often complained that I was getting “special treatment.” I kept quiet about my condition because I didn’t want to be bullied or ridiculed. Back then, there was little awareness about epilepsy—even teachers struggled to understand. I remember having to call my mom from the school office after a gym teacher tried to force me to participate in activities I wasn’t medically cleared to do. My mom always made sure my voice was heard.

Throughout the years, I’ve undergone extensive testing and treatment, including stays at the EMU units at the University of Pennsylvania, Jefferson Hospital, and Christiana Care. My final diagnosis includes generalized tonic-clonic epilepsy, absence seizures, photosensitive epilepsy, absence seizures during sleep, and generalized anxiety disorder. I also live with other chronic health conditions.

In 2004, I joined the Epilepsy Foundation of Delaware (EFDE) for support and education. I’ve participated in support groups and the Freedom From Seizures 5K Run/Walk with my family. I even served on the board of directors for a time. EFDE has given me community, knowledge, and strength.

Unfortunately, my journey hasn’t been without professional hardship. In 2006, I experienced discrimination at work despite being protected under FMLA and providing proper documentation. In 2007, my doctor declared me permanently unable to work due to my condition. Around that time, I also lost my ability to sense an oncoming seizure, something that used to help me prepare. I lost my driver’s license over 15 years ago. While I haven’t had a tonic-clonic seizure in almost seven years, I still experience other types of seizures regularly.

On difficult days, I find peace in listening to country music—especially Tim McGraw. But my greatest source of strength is my family. Their unconditional love, support, and protection have carried me through every stage of life. I’ve been truly blessed with extended family and friends who never let me face this journey alone.

Every person living with epilepsy is unique. Our experiences, our treatments, and our stories may differ, but one thing connects us all: resilience. I continue to take advantage of the resources and programs offered by EFDE, and I find purpose in sharing my story and hearing others share theirs. We learn from each other. We support each other.

Living with epilepsy is hard. There are daily challenges, and sadly, there is still judgment and misunderstanding in the world. But through it all, I’ve learned that we are warriors—not defined by our diagnosis, but by our determination to keep going.