How the epilepsy story began
My first noted seizure was when I was 12, on a family vacation in Costa Rica. I was sharing a room with my sister, and she saw me have a seizure in my sleep. I have no recollection of that trip, I woke up in a Costa Rican hospital with no idea what had happened, just that I felt exhausted and drained.
We thought it might’ve been an issue with my eyes. Back in the US I went and had an EEG done, the doctor asked if I had been involved in a car wreck. I hadn’t, but it triggered a memory from a year and a half prior. I was playing on a makeshift zipwire in a friend’s back garden. I immediately remembered there was a knot in the line and when I hit it, it threw me back and I hit my head on the tree and was knocked unconscious. My friends were standing over me and the whole world was a shade of green. I couldn't move my arms or legs, and was only able to move after about 10 minutes.
A traumatic brain injury
I never went to the doctor, or got checked up on for a concussion. I just went home and went to bed, which is probably one of the biggest regrets of my life - not getting help for what I now know is a traumatic brain injury.
In the 8th grade, I would lose my vision and get constant migraines, especially playing video games. It was so draining that afterwards I would want to take a 6 hour nap. It all connected, the neurologist said I was probably having auras. Which I’d never heard of before! There was a very high chance I was having seizures when sleeping. It was fortunate that my sister saw me seize, I was unknowingly living with epilepsy for a year and half.
Learn more: What are nocturnal seizures?
Then I went through the hardship of finding the right medication. We started documenting my seizures, there were only about 5 between the first and last documented one.
Living with epilepsy at school and college
In school, you have the pressure to do things like go to parties, or to play contact sports. Personally I felt weird if I stayed up late, so I shied away from going out late as I knew it was a trigger. In terms of my social life it was limited to sports like baseball and school.
When I got to college, I felt like I had been playing the victim card. I realized that I am going to live with epilepsy for the rest of my life. Every year I get an EEG, and it never changes. The doctor offered to take me off medication, but I am ok with taking it and feel safer with it. I decided I was going to use epilepsy to my benefit and live a healthy life. I eat clean, I don't drink sodas, I drink a gallon of water daily and I work out every day.
More information: Can you exercise with epilepsy?
For five years of my life epilepsy was such a deterrent. and I was afraid to explore different areas of life because I was so concerned about having a seizure. I didn't want to play the victim card any longer. I have lived a very fruitful life ever since I embraced it. Epilepsy has been a blessing in disguise - it taught me to live healthy and be empathetic towards those with epilepsy and other disabilities, whether it be visible or not.
Now, I always look for the silver lining in everything. I always think, ‘would I be as healthy as I am today if it weren't for epilepsy?’. Now I live a very normal lifestyle, and have been seizure free for over 6 years.
Advice to others on their epilepsy journey
I wish that I had a mentor or someone in my life that personally understands epilepsy, and what it means to have it. Someone to help me take the time to accept it and learn to love myself. Growing up I saw myself as being different. In reality, there are a lot of people that are fighting battles that can't be seen. Once I fully embraced it, I understood there’s nothing ‘wrong’ with me.
You’ve been dealt the card, you can play it and get through. If something happens, I will get through it. Support is important. Find a loving support system that truly understands what you’re going through - especially when you’re struggling. It’s really neat to bond with someone else over a shared disability. You just feel instantly connected.
Find community: How to find epilepsy support groups?
Life on Twentysomethings Austin
I was born and raised in Greenville, South Carolina and lost my job with the Atlanta Braves during COVID. I was only 6 months in, so I moved back home to sell insurance with my dad. One night I was watching TV, and got an Instagram DM. It was from a casting producer for a new TV show. I would usually think this was some spam, but something in my head made me check it out.
I went to his profile and it was a real person. Had a phone call, then I was passed on to the casting producers. I grew up doing theatre and sports, I dreamed of being on Broadway. So it was cool because it felt like an opportunity to reignite the dreams I had as a kid. It was a blessing to be a part of it. It was a great production and an amazing cast, but still no word for Season 2!
Currently I am interviewing for jobs and should know more over the coming weeks. I am a hard worker and always have something to do. I really want to work in professional sports, I definitely feel I have unfinished business with the Atlanta Braves - it would be great to be back with them. I now have a lot of opportunities, even some possible acting down the road.
Friendship with Love is Blind’s Matt Barnett and Amber Pike
They are two of the best people, I love them so much. I knew Matt before Netflix, we lived in the same apartment building in Atlanta, and met at a cookout one evening. It was a complete coincidence that we both ended up on Netflix shows! People ask me if I’ve seen ‘Love is Blind’, but I haven’t because I don’t want my perception of them to change. They are both great people. They are my rocks, and have been so supportive.
