7-26-11: A Professional Athlete with ALS
For the past few months, we’ve been speaking regularly with the writer Dudley Clendinen, who was diagnosed with ALS, also known as Lou Gehrig’s disease, last November at the age of 66. Dudley has bulbar onset ALS, which is affecting his voice and his ability to speak. All our conversations are part of the series “Living with Lou: Dudley Clendinen on a Good, Short Life.”
A few weeks ago, Dudley told us that he’s not interested in using the different technologies available to people with ALS.
“When I can’t speak anymore, I’m not sure that it’s going to be a life I enjoy or feel that I am contributing to,” Dudley told us. “If I can still write, I might. But if my hands don’t work, I’m not sure I’ll be easily able to write. Some people have become famous for being stoic enough to continue to rely on machines that can read the will of their eyebrows or the movement of their eyes. I’m not that stoic. I don’t want a life that limits me in that way. I still don’t think I’m afraid of dying — but the idea of being terribly compromised is abhorrent to me. I am afraid of that.”
We wanted to hear from a person who HAS decided to use these technologies. O. J. Brigance worked as a professional football player for over a decade, and was a member of the Ravens team that won the Superbowl in 2001. Mr. Brigance was diagnosed with ALS in 2007, and now works for the Ravens as a Senior Advisor to Player Development. He also started a foundation called the Brigance Brigade, which works to better the quality of life for ALS patients — and to fund research for a cure.
Mr. Brigance uses a kind of technology called a DynaVox to communicate. He uses his eyes to move to different letters on the screen. We sent him the questions ahead of time, and he wrote answers to the questions out. Tom met with him at the Ravens office yesterday morning. Lora Clawson, a nurse-practitioner who works with Mr. Brigance, at Johns Hopkins’s ALS Clinic, was also there.
Mr. Brigance speaks about his transition from being a professional athlete to being in a wheelchair, and about how, despite the terminal nature of ALS, he continues to remain hopeful.