Finding Purpose in My Journey

I was diagnosed with juvenile myoclonic epilepsy (JME) at 15 years old after experiencing two tonic-clonic seizures in high school. What started as a typical morning quickly turned into a defining moment of my life that altered how I viewed my health, future, and myself. Before my diagnosis, I had experienced “twitches” or small myoclonic jerks, mostly in the mornings, but I shrugged them off as nothing serious. After my seizures, though, there was no ignoring the truth. I was thrust into a world of neurology appointments, EEGs, MRIs, and countless tests. I didn’t know it yet, but this diagnosis would change my life forever—not just because of the challenges but because of the resilience I discovered.

The path to treatment was anything but straightforward. The first step was trial and error with anti-seizure medications. Some medications left me so groggy I could barely focus on school; others gave me unbearable side effects. It felt like I was trapped in a cycle of hope and disappointment. My neurologist eventually recommended the ketogenic diet as a complementary therapy. While it works for some, it didn’t work for me. By the time I turned 17, I was labeled drug-resistant—a term that was difficult to hear. It felt like my condition was a puzzle that couldn’t be solved. But amidst the frustration, I decided I wouldn’t let this diagnosis define me.

Living with JME hasn’t been easy. Beyond the physical aspects of seizures, the cognitive challenges have been some of the most difficult to overcome. Memory lapses, difficulty concentrating, and the fear of seizures affecting my academic performance weighed heavily on me. Being in school with epilepsy was particularly challenging. I had to advocate for myself, requesting accommodations like extra time on tests and seizure action plans to ensure I felt safe in the classroom. At first, it was uncomfortable to ask for help—I didn’t want to be seen as “different.” But I quickly learned that seeking support isn’t a sign of weakness; it’s a form of strength.

I leaned heavily on the support of my family, friends, nurses, and neurologists. My mom, Teresa, was always by my side, attending appointments, researching treatments, and helping me find my footing. My friends reassured me when I felt isolated or overwhelmed, and my medical team worked tirelessly to help me live my best life. Epilepsy is not something you can face alone, and I’m grateful every day for the incredible people who have been part of my journey.

As I regained control of my life, I found a sense of purpose within my epilepsy community. I began volunteering at Walks to End Epilepsy® and counseling at camps like "Rock N’ Rally" and "Camp Never Give Up." These experiences gave me something that no medication or treatment could—connection. I met children and teens navigating the same struggles I faced, and I realized how powerful it is to find solidarity in a shared journey. Volunteering became my reason to wake up every morning, despite the challenges I faced.

The Epilepsy Foundation has played a vital role in my journey. Their programs, like "Rock N’ Rally" and "Camp Never Give Up," have allowed me to connect with others and give back to the community. As a camp counselor, I’ve had the privilege of mentoring children and teens, helping them realize that epilepsy doesn’t have to hold them back. Through the Foundation, I’ve gained invaluable resources and education that have empowered me to take control of my health and advocate for myself.

I’m sharing my story because I want to inspire others who are navigating their epilepsy journeys. I want them to know they’re not alone and that there’s a community of people who understand what they’re going through. Sharing our experiences creates understanding, support, and hope for a brighter future.

To anyone who is living with epilepsy or supporting someone with the condition, my message is this: epilepsy doesn’t define you, and it’s not a barrier to who you want to become. It’s simply a part of your story, or a chapter, not the whole book. Despite the seizures, medications, and challenges, I recently graduated with a Bachelor of Science in biology, and I couldn’t be prouder. If someone had told me at 15 that I’d be here now, I’m not sure I would have believed them. But I’ve learned that resilience is built not by avoiding challenges but by facing them head-on.