Resilience and Perseverance

Resilience and perseverance. Rebecca Alexander has both. She also has severe hearing loss and is going blind. She's 35.

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 narrowing to a pinpoint but not gone. Her hearing has been restored with a cochlear implant, which she's still adjusting to. Blind and Deaf. Deafblind as they used to call it.

Alexander isn’t letting it stop her. Her disability -- and a host of other setbacks -- seem 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. “Not Fade Away” is a roller coaster ride of achievements and mishaps, physical feats and catastrophic accidents, ambitions realized and tragedies that can’t be averted. 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.

For more about the book, see my New York Times review 10/22/14: 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.