Motivated to Make A Difference

I was diagnosed with benign rolandic epilepsy (BRE) about ten years ago when I had two documented tonic-clonic seizures. Not only was I diagnosed with BRE, but when I was in the fifth grade, I was diagnosed with abdominal epilepsy as well as a learning and anxiety disorder due to my condition. This is my story about how I never let my diagnosis hold me back. 

Being diagnosed with BRE - a condition that I and many of my third-grade peers had never heard of - made me stand out for the first time in my life. Rather than be discouraged, I saw it as an opportunity to educate others about epilepsy and seizures. So, when I returned to school after being hospitalized, I told my whole class that I had been in the hospital and had two seizures. As the years went by, I told everyone I met about my epilepsy. Looking back on it, I am so vocal about it because epilepsy is a critical part of me. I am proud of all that I have overcome and done to give back to the epilepsy community. 

I will never forget one of the appointments my mother and I had with my neurologist. She relayed the news to me that I might grow out of my epilepsy one day. My mother was excited, but I was concerned that it would change what I viewed as a special part of me. My doctor then told me that even if I grew out of my epilepsy, it would always be a part of me. At that moment, my fear of losing a part of me dissipated, and I realized that I wanted to devote my life to giving back and supporting the epilepsy community that has been so supportive of me. 

In the tenth grade, I was fortunate enough to stumble across the Epilepsy Foundation’s website; that is when my life changed forever. Working hands-on with the Epilepsy Foundation gave me a sense of purpose and helped me view life with a positive outlook. Through the Epilepsy Foundation, I have met children with epilepsy far more challenging than my own, but they have not let it define who they are in a negative light. They have more strength and perseverance than anyone I have ever met, and they don’t let their epilepsy hold them back from achieving their goals. I have made a conscious effort to view life with the same vigor and optimism. In fact, when I was backpacking Maine’s stretch of the Appalachian Trail, I thought of their awe-inspiring strength, which enabled me to push past my fears to reach the campsite. I reminded myself that no matter the challenge, I have the courage to persevere and motivate others to achieve their goals too. 

Throughout my time working hands-on with the Epilepsy Foundation, I’ve hosted multiple Walk to End Epilepsy® fundraisers and local fundraisers in my community. I hosted a cycle bar ride, Ride to End Epilepsy, and all the funds raised went towards the Epilepsy Foundation. Most notably, I organized and hosted an End Epilepsy A Capella Benefit Concert with my high school’s A Capella group and our local high school A Capella groups to raise awareness and funds to support the mission of the Epilepsy Foundation. 

I am just getting started, too. I have also worked with my school’s high school and middle school campuses’ administration to present at school assemblies to educate students and faculty about my story, seizure awareness, and seizure first aid. Every time I share my story, raise funds for epilepsy research, or raise awareness about epilepsy, I know it has the potential to make a difference and change someone’s life. 

Through my experiences and advocacy work, I have learned that epilepsy is much more than managing seizures. It is about self-awareness, wellness, and advocacy. I encourage others never to let a diagnosis, disappointment, or rejection define who they are in a negative light. My epilepsy doesn't define me, but I am grateful it has shaped who I am today and my determination to make a difference.