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.
“A remarkable story of resilience and heart, Not Fade Away follows Rebecca Alexander as she must navigate the world cursed with a rare genetic disorder that will one day rob her of both sight and hearing. Bereft of self-pity, funny, and bursting with honesty, Not Fade Away will get its hooks in you. I promise that by the end of her story, you will fall just as in love with Rebecca as I have.”
—Susannah Cahalan, New York Times bestselling author of Brain on Fire
“Her eyes and ears may be declining, but Rebecca’s sense of self is sharply focused and profoundly tuned. By sharing her life, she has enriched mine and will yours, too. I love this woman.”
“There is a saying that goes—you never know how strong you are until being strong is the only choice you have. Rebecca Alexander’s indomitable spirit spills out on to the pages of this incredible memoir. She will lift you up…the way she did for me.”
—Hoda Kotb, New York Times bestselling author of Ten Years Later and Hoda, and Emmy-award-winning anchor of the Today show
“An honest and eloquent look at life … Alexander emphasized the importance of embracing the here and now, of being present and grateful for the gift of life, in whatever shape it might take.”
“profoundly inspiring … [Rebecca’s] 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.”
“wise and realistic instruction in intentional living, grace, and overcoming obstacles great and small.”
When Rebecca Alexander was 12 she received her first diagnosis and was told that she was slowing losing her sight and would eventually be blind. In college she learned that she suffered from Usher Syndrome III, a rare disorder, which meant she was not only losing her sight but her hearing as well. She would be completely blind and deaf by the time she was 30. Not Fade Away interweaves the story of her early and present life, and takes us through her diagnosis and the physical and emotional process of losing both her sight and hearing. Despite the frightening diagnosis and the constant adjusting to her ever changing needs this is an optimistic and inspiring story. She is soaking up as much as she can before its gone, spending time looking at the faces of her friends and family, listening to their voices and laughter, listening to music or the sound of the rain or the sight of the stars.
Now 34 years old she still has some sight and minimal hearing and has to constantly adjust to her changing world. She has learned sign language and is now learning tactile sign and will eventually learn Braille. She finally got over her discomfort in using a cane after falling down a hole on the Manhattan sidewalk. She had to give up one of her favorite things –driving. She was recently the recipient of a new type of Cochlear implant or “bionic ear” and while it means she can hear what is being said the sounds have taken away the personality of those around her, making them all sound robotic.
She is like a modern day Helen Keller with the difference being that Helen never knew what it was like to see and hear and Rebecca has watched these things gradually disappear. But she is a powerhouse who doesn’t let her disabilities define her; hugely accomplished she is a practicing psychotherapist in New York, received a double masters from Columbia, teaches spin classes, has completed marathons and hiked the Incan Trail.
This is the ultimate inspirational memoir about overcoming adversity. While her story is a singular one, it contains universal truths and experiences that will resonate deeply with a variety of people. She wants to inspire others to treasure what they have and to stop making excuses and embrace life for what it is now. When you see all of the things that Rebecca has gone through in her 34 years (going deaf and blind but also her parent’s divorce, her twin brother suffering from debilitating bi-polar disorder, an eating disorder, and a horrible accident that shattered most of her body, as well as dealing with dating with her disabilities, and navigating the streets of New York every day) readers will recognize what they DO have, be grateful and use it to the best of their abilities.
VP, Editorial Director