Please Meet Bryan Black Or Better Known As Basketball Jersey Epilepsy Guy (Jerseys4Hope)
I originally met Bryan a few years back when I was working at EKU and came across his great idea of collecting collegiate jerseys to raise epilepsy awareness, but also lifting his own spirits during his RNS implantation brain surgeries. I truly connected to this because I had a RNS implantation in 2017 myself and the battery replaced in December 2019. I also thought wow this is awesome and at that time I was still working and wanted to make sure he got an EKU Basketball jersey to represent. I also reached out to other coaches which I knew from other colleges from where Brent and I had been to spread the word.
But it wasn't until recently via Twitter I have truly connected with Bryan via my blog postings and also just DMs discussing life with uncontrolled epilepsy and we both are not able to work. Learn more about Bryan's Continued epilepsy journey.
How and when did you develop seizures and what type do you have? Did they change as you got older?
I developed symptoms that were debilitating by 2008 but fell out of a window when I was 2 and had neurological issues that were undiagnosed. I have medial temporal lobe epilepsy. They have mostly gotten worse as I’ve gotten older.
In 2012 I began to have full, generalized seizures that would cause me to lose consciousness and have convulsions regularly. This persisted and only got worse and worse to the point where I had to have two brain surgeries in 2018. The doctors put an RNS on my brain which has helped reduce the seizures a little bit, but what helps more than anything else, is watching college sports, especially college basketball.
Are you able to work if yes what do you do?
I am disabled and work 5-6 hours a week doing repetitive cleaning jobs.
Besides the RNS surgeries have you gone through to become controlled? If not controlled how often do you have seizures?
I take lamotrigene, clobazam and gabapentin, along with the RNS adjustments made. It varies all the time on the amount of seizures I have.
How does this effect your family in a daily basis?
It’s difficult for my family because of the unpredictable nature of the episodes. Some days are worse than others which then I can't do anything. It makes it tough to type or keep a train of thought.
What did or do you do to stay positive about having epilepsy? Also, what would you recommend to other epilepsy warriors?
When I had feelings of true despair in March 2017, I emailed, and reached out to every single college basketball program in the nation, and began to receive jerseys, which was completely unexpected. I never imagined that this could become as big as it did. I feel like the thing that’s the most important for folks that struggle with epilepsy is to find something that they can stay positive with and that can help them , stay focused in any way possible.
I feel that it’s most important for people to surround themselves with people who are understanding and will love you no matter what you’re going through. It’s also important to know that it’s really hard for them to see us go through what we go through and to try to encourage them as much as possible as we fight through epilepsy. Knowing that some of the days will be better than others is really important and to take it one day at a time.
If you want to reach Bryan yourself, you can try the various options below.
Twitter: @CBBjerseys4hope
Instagram: @jerseys4hope
gofundme to try and reach college basketball games is: http://gofundme.com/college-basketball-vs-epilepsy
Bryan's venmo for financial support for my family is: http://Venmo.com/Jerseys4Hope
Thank you Bryan for sharing your personal journey with epilepsy and also being a connection of support for me as well. I encourage any epilepsy warrior to reach out to Bryan to have the community of support.
I am also asking ALL Levels of college basketball coaches if you haven't given a jersey yet, please do so!
Bryan has 277 of 362 colleges. He still needs all the HBCU's and 85 others.
Here is THE LIST Bryan provided, of who he needs. Thank you!
Binghamton, UMass-Lowell, New Hampshire, Vermont, East Carolina, Memphis, SMU, Temple, Wichita State, Florida State, North Carolina, Notre Dame, North Alabama, Queens (NC), Villanova, Idaho State, Montana, Northern Arizona, Northern Colorado, Gardner-Webb, Illinois, Indiana, Iowa, Minnesota, Cincinnati, Oklahoma, Hawai’i, Long Beach State, UC-Irvine, UC-Riverside, UC-San Diego, Ball State, Bowling Green, Coppin State, Delaware State, Howard, Morgan State, Norfolk State, North Carolina Central, South Carolina State, Evansville, Indiana State, San Jose State, Central Connecticut, Le Moyne, Long Island, Merrimack, Sacred Heart, Stonehill, Wagner, Lindenwood, Southern Indiana, Arizona State, Colorado, Colgate, Holy Cross, LSU, Mizzou, Tennessee, Lamar, McNeese, New Orleans, Nicholls State, Alabama A&M, Alabama State, Alcorn State, Arkansas-Pine Bluff, Bethune-Cookman, Grambling, Mississippi Valley State, Prairie View A&M, Southern, Texas Southern, North Dakota State, Omaha, St. Thomas, South Dakota, Georgia State, James Madison, Gonzaga, Pacific, St. Mary’s, Cal Baptist, Utah Tech
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I’m so grateful you connected with Bryan as someone who truly understands aspects of your journey. Love his devotion to college basketball and finding joy in his pursuit of all the jerseys. So fun and inspiring!