Even a darkening world can be brilliantly lit from within.
Born with a rare genetic mutation called Usher Syndrome type III, Rebecca Alexander has been simultaneously losing both her sight and hearing since she was a child, and was told that she would likely be completely blind and deaf by age 30. Then, at 18, a fall from a window left her athletic body completely shattered.
None of us know what we would do in the face of such devastation. What Rebecca did was rise to every challenge she faced. She was losing her vision and hearing and her body was broken, but she refused to lose her drive, her zest for life and – maybe most importantly – her sense of humor. Now, at 35, with only a sliver of sight and significantly deteriorated hearing, she is a psychotherapist with two masters’ degrees from Columbia University, and an athlete who teaches spin classes and regularly competes in extreme endurance races. She greets every day as if it were a gift, with boundless energy, innate curiosity, and a strength of spirit that have led her to places we can't imagine.
In Not Fade Away, Rebecca tells her extraordinary story, by turns harrowing, funny and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.
Not Fade Away is both a memoir of the senses and a unique look at the obstacles we all face—physical, psychological, and philosophical—exploring the extraordinary powers of memory, love, and perseverance. It is a gripping story, an offering of hope and motivation, and an exquisite reminder to live each day to its fullest.
In her profoundly inspiring account of life with a disease that is steadily stealing her vision and hearing and has been since childhood, Alexander offers an optimist's take on how to live with meaning and not succumb to pity or fear. It isn't until Alexander, a soccer-loving girl who likes to run around with her brothers, reaches adolescence that her family discovers an explanation for her falls and lack of balance: an inherited rare genetic mutation called Usher syndrome type III. Her version of events, which is less severe, makes her feel "comparatively lucky... and grateful" because she was able to enjoy years of blissful normalcy and her eyes and ears had the chance to take in countless memories absent later worries and heartbreak. During the summer after high school, she has a catastrophic accident after falling out a window, breaking or fracturing nearly every bone save for her right leg and foot. Having to delay college while recovering, she learns lasting lessons about how much pain she can endure, the lack of control on which she can't waste time dwelling, and the appreciation of her body as something to cherish. Relocating to New York, she becomes an advocate for herself and others with disabilities, earning a double master's degree to work as a psychotherapist. Her ability to find so much to be grateful for after being dealt such an unfair hand challenges those of us with far fewer hardships to treat each day as a gift.