Rebecca Alexander not only has severe hearing loss but she’s going blind as well. The double whammy is the result of Usher syndrome type 3, a variation on Usher 1 and 2 that appears later in life than the other two. In Alexander’s case the diagnosis was confirmed when she was 19, as she writes in her memoir “Not Fade Away.”
The doctor predicted she would be blind by age 30. He was wrong. She is now 35, with vision that is fading but not gone. Her hearing has been restored with a cochlear implant, which as of the writing of the book she was still adjusting to. Blind and Deaf. Deafblind as they used to call it.
But Alexander isn’t letting it stop her. It seems in fact to have infused her with boundless energy and ambition, which she needs simply to overcome the obstacles thrown in her path. She not only overcomes, however, but also triumphs. Her book “Not Fade Away” is a roller coaster ride of achievements and mishaps, physical feats and catastrophic accidents, tragedies that can’t be averted and ambitions realized. It’s also a love story — not in the conventional sense but in the outpouring of support she gets from friends and family, year after year.
I reviewed it in today’s New York Times: Young, Stricken and Determined to Fight.
The essay also mentions Nicole Kear’s memoir of retinitis pigmentosa, “Now I See You,” diagnosed when she too was 19. These are two remarkable stories of bad luck — and of the perseverance, will and grit to make a life in spite of it.