Creating A Community of Support

Bryan is sharing his eJourney about creating a community of support around college basketball

By Bryan Black , Oregon

Person with Epilepsy

Friday, May 19, 2023

I have struggled with epilepsy for many years, which has become increasingly difficult. When I was 2, I fell from a second-story window and hit my head. I developed seizures, which caused me to convulse while fully conscious. I felt that I needed to constantly move and pace but not move my arms so much. I was made fun of in school for doing my best to control my seizures, and the teachers could tell that something was off. M first-grade teacher did not understand and frequently embarrassed me in front of the class while I was trying to control my movements and not distract my fellow students.  

I began to suffer from complex epilepsy in 2008, which caused memory issues, and I  lost my ability to use language and math for minutes. I developed severe epilepsy in 2012 with serious loss of consciousness and major generalized seizures. My condition worsened. Constant seizures became a way of life for me. They numbered in the thousands, and while most are minor, I am still aware that I am experiencing a seizure. Some seizures still cause me to lose consciousness entirely, and the seizures at night are the worst. I have to lay a certain way to ensure that I stay breathing.  

I had multiple extended observations at the hospital and, in 2018, had two brain surgeries to put a responsive neurostimulation (RNS) implant in a place that helps calm down and shorten the number of seizures I have.  

I became increasingly saddened by my struggles over the years, and providing for my family was difficult. I decided to reach out to people who could help me get through my day and relax. I learned to focus my thoughts on something constant that can ground me and help make my seizures less frequent. The sports world, mainly college basketball, keeps me calm when other things can’t.  

I created a Twitter handle and began writing about my experiences to college basketball teams. To my amazement, I started to get jerseys in the mail. It was a magical and overwhelming show of compassion that brought tears to my eyes just thinking about it. I aim to collect all 353 Division 1 basketball jerseys to demonstrate how much they support me and others with epilepsy. To date, I have received 272 of the 357 D1 jerseys. 

The outpouring of kindness and support has been nothing short of a miracle for me, so out of this experience came an idea. My dream is to raise awareness for epilepsy and share what these schools have done for me and others with epilepsy. My goal is to travel to schools and games and share my story. I want to meet other people impacted by epilepsy and encourage them. I want to help people not be afraid and educate others that aren’t impacted by epilepsy to help them understand how to support those who are.  

Every time I look at these jerseys, they remind me that I’m not alone, and am so grateful for all the support. I hope my story is an encouragement for someone else. 

Reviewed By: Sara Wyen

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