Finding My Strength in a Supportive Community

Read Colby's eJourney about how support helped him overcome the challenges of living with epilepsy

By Colby Aguayo , Arizona

Person with Epilepsy

Monday, January 22, 2024

Epilepsy caused a significant turning point in my life. It all started when I was 13 years old. I had my very first seizure at almost midnight on my little brother's 7th birthday. It was a tonic-clonic seizure, and while I didn't think I was going to make it,  it was my brother who saved me by alerting my parents when he woke up and heard that I was choking. It was the scariest thing I have ever experienced. I remember crying when I woke up and realized I was in the ER. I was diagnosed with juvenile myoclonic epilepsy (JME), and everything changed.

I have always felt different from everybody else, being misunderstood and judged since my diagnosis. A lot of kids were embarrassed to be seen with me and didn't want to have anything to do with me simply because I had epilepsy. I was alone. It didn't help when I was partially paralyzed due to my seizures. I couldn't walk properly, and it took me out of doing the sports I loved: football, track and field, and cross country.

My inability to walk made it even more challenging for me to live an everyday life, and I was already struggling to make friends. I was bullied a lot when I was younger, and as I got older, people would look at me as if I was crazy or weird because of my sunny disposition about my situation and life. My grades suffered because I couldn't focus on my classes, and I would get easily frustrated when I couldn't do as well as the other kids. I was afraid of failure.

I knew I wouldn't go down without a fight. I stayed true to myself and stuck close to the people I trusted with my feelings and lifestyle. In school, I always made sure that I communicated with my teachers about my situation, and whenever I needed help with anything. I could count on them for assistance if I needed more time to work on an assignment, tutoring, or open up about my feelings. I did physical therapy for two months, and after those two months passed, I could use my legs like before. I felt stronger than ever. I couldn't continue playing football in my condition, but that didn't stop me from doing track and field and cross country. I ran like the wind, winning two district championships, one in cross country and the other in track and field, during my sophomore and senior years of high school.

After my first year of being seizure-free, I connected with the Epilepsy Foundation of Arizona, and then my mom discovered a summer event called "Camp Candlelight." I was only 14 at the time and nervous about going. I wound up homesick the first day my parents dropped me off for the week, but that feeling didn't last long. I met some of my best friends at camp. Starting in 2018, I went to Camp Candlelight every year as a camper and counselor.

I am now a sophomore at Grand Canyon University studying digital filmography, hoping to pursue a career in acting, filmmaking, writing, and YouTube. Although I never lived a normal childhood and teenage life, I do not regret my life now. Everybody refers to me as the "Big Cheese" like I am a celebrity, but I am one of millions of people who are battling epilepsy. Epilepsy is not going to stop me as I am striving for greatness. I thank God for the strength to keep moving forward to live fully. 
I encourage those who are currently battling epilepsy to live life to its fullest and never take advantage of the time that you have to work hard and make your dreams come true. You are not alone, even if it feels like it. Find and stay close to the people there for you, even at your worst. Try not to let your trauma define you or destroy you, but let it strengthen you instead.  

December 4 marks seven years of seizure-freedom, and to celebrate it, I am writing a memoir about my experiences. What made me decide to tell my story was the amount of love and support I have received over the years from my circle: my closest family and friends, the Epilepsy Foundation, and Camp Candlelight. They have always supported me in pursuing my goals and dreams and made me feel comfortable being myself and moving forward.

Reviewed By: Sara Wyen

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