Finding Strength in Seizures: A.J. Taylor’s Fight for Epilepsy Awareness

A.J. Taylor

Living with epilepsy presents unique challenges, from managing daily triggers to navigating misconceptions about the condition. A.J. Taylor knows this firsthand. Diagnosed as a teenager, he faced years of uncertainty, loneliness and life-threatening seizures — including a near-fatal car accident that reshaped his outlook. Now a passionate advocate, Taylor is dedicated to raising awareness, promoting seizure-safe school legislation and empowering others in the epilepsy community. In an interview with The Educated Patient, he shares his journey, the lessons he’s learned, and the importance of preparation, self-advocacy and finding joy in life despite the challenges.

Can you tell us a bit about your journey with epilepsy and how it has shaped your life?

A.J. Taylor: Diagnosed with epilepsy as a teenager in high school, I faced frequent seizure episodes that left me feeling isolated and excluded from many activities. I remember the rituals I had to adopt, like using a timer in the shower — anything longer than eight to 10 minutes could trigger seizures.

At school, my parents would meet with my teachers each year to discuss my condition, but there was no guidebook to ensure my safety. I felt like I was on my own, uncertain of who had my back when I needed support the most. A significant turning point in my life was a near-fatal car accident, which inspired me to become an advocate for others living with epilepsy. This journey has taught me the value of self-worth, bravery and the importance of community support.

Can you share the story of your near-fatal automobile accident and how it changed your approach to managing epilepsy?

AJT: In my 20s, after being seizure-free for a while, I missed a dose of my medication, which led to a seizure and a near-fatal car accident. I was airlifted to the hospital and fell into a coma. Thankfully, I did wake up, and that experience fueled my determination to advocate for others living with epilepsy. It was a wake-up call that inspired me to help others.

What strategies have you found helpful to manage epilepsy triggers during more stressful times of year?

AJT: Through my advocacy efforts, I learned about the importance of having a seizure action plan and a rescue medication such as Nayzilam (midazolam), a nasal spray that anyone can administer to me during an emergency whether I’m at work, the gym, out with friends or when traveling. My friends, family and co-workers know that I always have something with me, and they have my back if seizures come on.

As someone who has lived with epilepsy for 16 years, I’ve also learned finding the fun in life and taking some time for self-reflection is just as important as understanding how to be prepared and navigate hectic and sometimes anxiety-ridden times of the year, like the holidays.

What advice would you give to others in the epilepsy community who want to get involved in advocacy?

AJT: I decided to focus my efforts on advocating for seizure-safe school legislation in Georgia to support the next generation. I saw a need from my personal experience and met an advocacy representative who had spearheaded similar legislation, so the work began from there. It was no small feat, but in 2023 Georgia became the 22nd state to enact legislation that helps to ensure proper seizure training and safety in schools.

What are your goals as a patient advocate moving forward?

AJT: I hope that people take a minute to understand and support individuals living with epilepsy. Whether it’s learning about what’s needed for their safety, challenging stigma or being prepared to assist in an emergency, these actions can make a meaningful difference.

Is there anything else you would like to add?

AJT: As I reflect on the challenges of living with epilepsy, I also am reminded of the triumphs of learning along the way and embracing the fun. Over the years, I warped ignorance and bullying into a great appreciation for self-worth. I learned how to be brave and live in strength when others thought I was weak. I also learned the importance of community through the love shared by my friends and family. I hope everyone living with epilepsy or any chronic condition can embrace their journey as well.