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Not Fade Away: A Memoir of Senses Lost and Found
The inspiring and moving memoir of a young woman who is slowly losing her sight and hearing yet continues to live life to its fullest potential.
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 she was told that she would likely be completely blind and deaf by thirty. Then, at eighteen, 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, or—maybe most important—her sense of humor. Now, at thirty-five, 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.
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 she was told that she would likely be completely blind and deaf by thirty. Then, at eighteen, 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, or—maybe most important—her sense of humor. Now, at thirty-five, 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.
320 pages, Paperback
First published September 11, 2014
80 people are currently reading
1801 people want to read
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Displaying 1 - 30 of 151 reviews
June 12, 2015
Not Fade Away: A Memoir of Senses Lost and Found was well-written--once I got started I hardly put it down. I'd never heard of Rebecca Alexander or her story, so I wasn't sure what I was getting into with this memoir. Alexander leads the reader at a good pace, and is relatable. She is surprisingly upbeat when describing the effects of Usher Syndrome type III on her life with the sense of humor and sarcasm you might expect from a young woman living in New York with two completed Masters degrees. If not for that, I don't know if I'd have been able to get through a book that describes the devastating process of losing sight and vision simultaneously. Don't worry--this memoir is no pity party. After you check out her author's photo on the back cover and watch an interview with her (as I was compelled to do, about 3/4 of the way through the book) you'll realize Alexander is, for lack of a better word, a badass. She lets the world know that she might not have full use of two senses, but if anyone can handle it--she can.
September 23, 2014
What ages would I recommend it too? Eighteen and up. (Too many sexual references in the novel for a younger audience.)
Length? A couple of days.
Characters? Memorable, several characters.
Setting? Real world. California and New York.
Written approximately? 2014.
Does the story leave questions in the readers mind? Ready to read more. I want to learn more about the science behind the disorder.
Any issues the author (or a more recent publisher) should cover? I'd really like some information or links that would help readers find a helpful specialist. So many are not.
Short storyline: A look at the life of a woman with Usher 3. She covers what she feels she did right, and even her glaring mistakes.
Notes for the reader: She clearly conveys the differences among people with eye disorders. She was able to learn sign language, and prefers it to speech or braille. My attempt at sign language a few decades ago was a failure. My vision was too poor to follow the motion. I am now learning braille. Following different paths we'll still reach the same place.
Length? A couple of days.
Characters? Memorable, several characters.
Setting? Real world. California and New York.
Written approximately? 2014.
Does the story leave questions in the readers mind? Ready to read more. I want to learn more about the science behind the disorder.
Any issues the author (or a more recent publisher) should cover? I'd really like some information or links that would help readers find a helpful specialist. So many are not.
Short storyline: A look at the life of a woman with Usher 3. She covers what she feels she did right, and even her glaring mistakes.
Notes for the reader: She clearly conveys the differences among people with eye disorders. She was able to learn sign language, and prefers it to speech or braille. My attempt at sign language a few decades ago was a failure. My vision was too poor to follow the motion. I am now learning braille. Following different paths we'll still reach the same place.
August 18, 2014
This book is many things, all of them quite wonderful: A love letter to the sensory world written from deep in the space between where cognition occurs and reflection resounds. A truly inspiring testament to the human spirit’s power to overcome the circumstances of that game of genetic roulette which we call heredity while also a moving meditation on what it means to be a friend—both to one’s own self and another. An aware-yet-playfully-aloof ode of gratitude that asks only that the reader consider how they may make the world a nicer place to be.
I wish the author nothing but bliss and the continual realization that she is never alone, that her voice is heard loud and clear.
I wish the author nothing but bliss and the continual realization that she is never alone, that her voice is heard loud and clear.
November 6, 2014
I really want to give this book four stars, but I just can't. Alexander's writing quality is very high, but the many details of her personal life just didn't resonate with me. I urge others to give the story a try if it sounds interesting to them.
For those who've read this one, there was an incident that struck me as a bit ... off ... which was treated as perfectly routine: one day in high school, the author is called out of class for a phone call - it's her father calling to tell her the (ultrasound) gender of her step-mother's fetus. I found that incredibly immature on his part.
Solid audio narration is a perfect fit for the material.
For those who've read this one, there was an incident that struck me as a bit ... off ... which was treated as perfectly routine: one day in high school, the author is called out of class for a phone call - it's her father calling to tell her the (ultrasound) gender of her step-mother's fetus. I found that incredibly immature on his part.
Solid audio narration is a perfect fit for the material.
September 29, 2015
In an attempt to broaden my horizons I wasted a few hours of my life listening to this audiobook. I"m not sure how I managed to find it, it must have been either an audible daily deal or I might have accidentally bought it thinking it was something else. Anyway, Rebecca Alexander has a disease that it making her go deaf and blind at the same time. The book uses that as a back drop as she talks and talks about her personal life, which is not interesting at all. I guess some people might find this book inspiring, but I didn't really catch any insights about coping or suffering or anything at all.
May 28, 2017
2.5 stars I started out really liking the book. She was an interesting story to tell and a unique point of view. However, the writing style really slowed me down. I found myself not being able to read it for more than 20 minutes at a time.
July 16, 2014
Rebecca Alexander’s memoir, Not Fade Away: A Memoir of Senses Lost and Found is profound and illuminating. The memoir was short (less than 300 pages), the story moved quickly (birth to mid-30’s) and it was written clearly and authentically. Ms. Alexander suffers from a rare genetic disease Usher III causing her to lose both her hearing and sight by her thirties.
Ms. Alexander’s has a desire to live life to the fullest and push herself in her experiences; whether she fails or succeeds this extraordinary woman goes through life with grace and humor.
I received a copy of this book through Goodreads program in exchange for a review.
This book imparted several important lessons; here are a few that I have gleaned:
1. Individuals with disabilities (physical and/or mental) that are not readily apparent to the naked eye are no less deserving of our assistance and compassion;
2. It is never too late to break free of your routine, mindset or wherever it may be and take the challenge, confront your fear and move forward in your pursuit;
3. Be of service in whatever way you can be to yourself and others;
4. Develop a mantra that can help you in times of crisis or fear; learn to still the body and the mind, try meditating.
For anyone who interested in reading a thoughtfully written memoir that will move you, this is one book you’ll want to add to reading list. I look forward to reading more from this inspirational author who tells it like with is.
Ms. Alexander’s has a desire to live life to the fullest and push herself in her experiences; whether she fails or succeeds this extraordinary woman goes through life with grace and humor.
I received a copy of this book through Goodreads program in exchange for a review.
This book imparted several important lessons; here are a few that I have gleaned:
1. Individuals with disabilities (physical and/or mental) that are not readily apparent to the naked eye are no less deserving of our assistance and compassion;
2. It is never too late to break free of your routine, mindset or wherever it may be and take the challenge, confront your fear and move forward in your pursuit;
3. Be of service in whatever way you can be to yourself and others;
4. Develop a mantra that can help you in times of crisis or fear; learn to still the body and the mind, try meditating.
For anyone who interested in reading a thoughtfully written memoir that will move you, this is one book you’ll want to add to reading list. I look forward to reading more from this inspirational author who tells it like with is.
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April 27, 2014Due to a roll of the genetic dice, Rebecca Alexander has Usher Syndrome III. From Wikipedia - "Usher syndrome is a relatively rare genetic disorder caused by a mutation in any one of 10 genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of deafblindness. Usher syndrome is incurable at present." "People with Usher syndrome III are not born deaf, but experience a gradual loss of their hearing and vision; they may or may not have balance difficulties." Alexander tells her story in a matter-of-fact and upbeat way while acknowledging that it isn't easy. She's an inspiration. In spite of many challenges, she is an accomplished psychotherapist,spin instructor, and athlete. For those of us inclined to whine about our 'first world problems,' this memoir will help broaden our point of view.
September 28, 2014
I would love to read more about Daniel's struggles. I quit at chapter 45 but think I should have quit sooner.
April 6, 2015
Rebecca Alexander is a powerful force to be reckoned with. At the writing of this memoir, she is in her early thirties. She is accomplished, vivacious, active, energetic, and derives a great deal of satisfaction from helping others. She has taught in a prison, she has volunteered for Project Open Hand, a nonprofit organization which delivers meals to people living with HIV/AIDS. Ms. Alexander earned a Master’s degree in Public Health, and a second Master’s in Social Work, both from Columbia University. In addition to her MSW, she has trained at a psychoanalytic institute, received a certification in psychodynamic psychotherapy, and works full time as a psychotherapist. She also works as a spin instructor. She is an extreme athlete, has run with the Olympic torch as a Community Hero, successfully completed a five mile lake swim, and a six hundred mile AIDS/LifeCycle bike ride from San Francisco to L.A.
As if all of this were not enough, (and there is more, much much more, far too much to mention in a book review limited to a mere 1200 words) she has accomplished all of this while becoming steadily deaf and blind. Due to a rare genetic disorder called Usher Syndrome, Ms. Alexander is eventually heading toward a condition called deafblindness. Yeah, that’s what Helen Keller had. At the moment, Usher’s is irreversible, untreatable, and there is little, medically, to be done about it, other than await the inevitable decline. This, however, does not stop Rebecca for one instant. She is doing anything but go gentle into that good night.
Her book, Not Fade Away, A memoir of Senses Lost and Found, is nicely and movingly written (co-written with Sascha Alper), and surprisingly, possesses tremendous real cheerful humor. Despite her inevitable downward spiral of lost senses, the memoir contains not a shred of self-pity. Not an iota. None. Really. Rebecca maintains a positive attitude, throughout, without sounding in the slightest Pollyanna, saccharine, or unrealistic about what she is experiencing. She allows herself deep sadness at her losses—and at her impending even greater and more final losses—but throughout this impressive memoir, she manages to maintain a tone that demonstrates her bravery, defiance, determination, and yes, even humor.
Ms. Alexander had a pretty normal childhood, though she admits to being unusually klutzy, which may have been an early herald of her syndrome, as her hearing may have already been slightly compromised, and one of the hallmarks of Usher Syndrome is vestibular dysfunction which may cause imbalance and spatial disorientation. Then, at eighteen, already feeling the beginnings of the decline of her senses, she comes home drunk one night, and on her way to the bathroom, accidently tumbles out of the window of her second floor bedroom. She falls “backward more than twenty-seven feet onto the flagstone patio behind our house, landing, miraculously, on my left side, breaking almost everything but my head and neck.” The fall leaves her needing several surgeries. “Ultimately, the only thing left without a cast would be my right leg and foot.” There follows a two page description of the difficulties involved in being able to pick up a pen with her foot. Already going blind and deaf, and now this. Can we say the trials of Job?
Ms. Alexander describes where she acquired her positive attitude. “When we spend time together now, both with our hearing aids, me with my cane and her with her walking stick, Grandma Faye is a living example of what she taught me then. Nobody wants to hear you complain, so keep the bitching and moaning to yourself. Embrace the world with a positive outlook, and you will get so much more out of life.”
She writes,
I wouldn’t wish what I have on anyone, and would never have chosen it, but it has given me an extraordinary ability to understand profoundly what living in the moment really means and to always try my best to do just that.
I don’t mean living each day as if it were my last. I have been there, done that. I’ve gone bungee jumping and skydiving. There have been times where there were too many guys, too much drinking, a never-ending whirlwind of ‘let’s grab life by the balls.’ …but never pausing to catch my breath is not the way to appreciate a world that is slowly—and sometimes not so slowly—going silent and dark for me. And while mine is an accelerated decline, one that will leave me with decades of blindness and deafness—many more than I’ll spend with hearing and vision, if I live a long and healthy life—the end is inevitable for all of us. In some ways, I feel lucky to never be able to forget that.
I found myself quite moved when she wrote
Sometimes I can’t help but wonder how it will be at the very end, though I try not to. Will I have a last clear image that I see, before my pinprick of a hole [her vision is blackening inward, contracting toward the center which is still mostly clear] finally closes up forever? Or will things just blur more and more, an impressionist painting that gets increasingly less recognizable until finally it’s just a swirl of fading color, and then nothing? Will the last authentic sound I hear be a laugh, a cry, a subway rumbling into the station?
In order to maintain a semblance of normal life, Ms. Alexander has had to learn sign language and Braille. She must use a cane, has three different hearing aids for different environments, and a cochlear implant in one ear. Mind you, this does not stop her from being quite active in the New York City dating/singles scene. Talk about valor! Dating is tough enough when you can see and hear most of what is going on. But as her vision and hearing continue to fade away, she will be unable to see others sign, and will at some point be reduced to tactile signing, “the language used by people who are both deaf and blind.” Her description of learning this, and doing it with her best friend Caroline, is at once lovely, poignant, intimate, and deeply frightening to me, who is merely facing the normal declines of age.
We’ll lie facing one another, and she’ll take both of my hands and place hers inside them. As her hand begins to take form, I’ll start to sound out the word she is spelling in my hand, listening intently with my palm and fingers, closing my eyes to help me focus. While I hold and follow the movement of her hands, Caroline will bring her pointer finger to her chest, and I’ll speak aloud what she is signing….
At first we were terrible at it, and I would start to giggle at every mistake…and though I couldn’t hear Caroline, I knew she was giggling, too because I could feel the quick little bounces her upper body would make against the bed…Caroline could hear the sound of my laughter loud and clear, but she knew that I couldn’t hear hers, so she would take my hand and place it against her neck right at her vocal cords, so that I could feel her laughing, which made me laugh even harder.
Watching people tactile sign is like watching two people embrace, an elaborate dance of hands and fingers.
This book, a brave and affecting and funny account of a horrible and frightening illness, made me laugh and cry and feel truly and deeply moved. It does not seem like the kind of book one would enjoy, but I did enjoy it. I also think that I am also going to buy several copies and give them to people I know who are facing some tough illness or period in their lives. Not Fade Away is a blueprint for handling the ugliest kind of shit life can throw at you, with grace and guts and courage. Bravo Ms. Alexander!
As if all of this were not enough, (and there is more, much much more, far too much to mention in a book review limited to a mere 1200 words) she has accomplished all of this while becoming steadily deaf and blind. Due to a rare genetic disorder called Usher Syndrome, Ms. Alexander is eventually heading toward a condition called deafblindness. Yeah, that’s what Helen Keller had. At the moment, Usher’s is irreversible, untreatable, and there is little, medically, to be done about it, other than await the inevitable decline. This, however, does not stop Rebecca for one instant. She is doing anything but go gentle into that good night.
Her book, Not Fade Away, A memoir of Senses Lost and Found, is nicely and movingly written (co-written with Sascha Alper), and surprisingly, possesses tremendous real cheerful humor. Despite her inevitable downward spiral of lost senses, the memoir contains not a shred of self-pity. Not an iota. None. Really. Rebecca maintains a positive attitude, throughout, without sounding in the slightest Pollyanna, saccharine, or unrealistic about what she is experiencing. She allows herself deep sadness at her losses—and at her impending even greater and more final losses—but throughout this impressive memoir, she manages to maintain a tone that demonstrates her bravery, defiance, determination, and yes, even humor.
Ms. Alexander had a pretty normal childhood, though she admits to being unusually klutzy, which may have been an early herald of her syndrome, as her hearing may have already been slightly compromised, and one of the hallmarks of Usher Syndrome is vestibular dysfunction which may cause imbalance and spatial disorientation. Then, at eighteen, already feeling the beginnings of the decline of her senses, she comes home drunk one night, and on her way to the bathroom, accidently tumbles out of the window of her second floor bedroom. She falls “backward more than twenty-seven feet onto the flagstone patio behind our house, landing, miraculously, on my left side, breaking almost everything but my head and neck.” The fall leaves her needing several surgeries. “Ultimately, the only thing left without a cast would be my right leg and foot.” There follows a two page description of the difficulties involved in being able to pick up a pen with her foot. Already going blind and deaf, and now this. Can we say the trials of Job?
Ms. Alexander describes where she acquired her positive attitude. “When we spend time together now, both with our hearing aids, me with my cane and her with her walking stick, Grandma Faye is a living example of what she taught me then. Nobody wants to hear you complain, so keep the bitching and moaning to yourself. Embrace the world with a positive outlook, and you will get so much more out of life.”
She writes,
I wouldn’t wish what I have on anyone, and would never have chosen it, but it has given me an extraordinary ability to understand profoundly what living in the moment really means and to always try my best to do just that.
I don’t mean living each day as if it were my last. I have been there, done that. I’ve gone bungee jumping and skydiving. There have been times where there were too many guys, too much drinking, a never-ending whirlwind of ‘let’s grab life by the balls.’ …but never pausing to catch my breath is not the way to appreciate a world that is slowly—and sometimes not so slowly—going silent and dark for me. And while mine is an accelerated decline, one that will leave me with decades of blindness and deafness—many more than I’ll spend with hearing and vision, if I live a long and healthy life—the end is inevitable for all of us. In some ways, I feel lucky to never be able to forget that.
I found myself quite moved when she wrote
Sometimes I can’t help but wonder how it will be at the very end, though I try not to. Will I have a last clear image that I see, before my pinprick of a hole [her vision is blackening inward, contracting toward the center which is still mostly clear] finally closes up forever? Or will things just blur more and more, an impressionist painting that gets increasingly less recognizable until finally it’s just a swirl of fading color, and then nothing? Will the last authentic sound I hear be a laugh, a cry, a subway rumbling into the station?
In order to maintain a semblance of normal life, Ms. Alexander has had to learn sign language and Braille. She must use a cane, has three different hearing aids for different environments, and a cochlear implant in one ear. Mind you, this does not stop her from being quite active in the New York City dating/singles scene. Talk about valor! Dating is tough enough when you can see and hear most of what is going on. But as her vision and hearing continue to fade away, she will be unable to see others sign, and will at some point be reduced to tactile signing, “the language used by people who are both deaf and blind.” Her description of learning this, and doing it with her best friend Caroline, is at once lovely, poignant, intimate, and deeply frightening to me, who is merely facing the normal declines of age.
We’ll lie facing one another, and she’ll take both of my hands and place hers inside them. As her hand begins to take form, I’ll start to sound out the word she is spelling in my hand, listening intently with my palm and fingers, closing my eyes to help me focus. While I hold and follow the movement of her hands, Caroline will bring her pointer finger to her chest, and I’ll speak aloud what she is signing….
At first we were terrible at it, and I would start to giggle at every mistake…and though I couldn’t hear Caroline, I knew she was giggling, too because I could feel the quick little bounces her upper body would make against the bed…Caroline could hear the sound of my laughter loud and clear, but she knew that I couldn’t hear hers, so she would take my hand and place it against her neck right at her vocal cords, so that I could feel her laughing, which made me laugh even harder.
Watching people tactile sign is like watching two people embrace, an elaborate dance of hands and fingers.
This book, a brave and affecting and funny account of a horrible and frightening illness, made me laugh and cry and feel truly and deeply moved. It does not seem like the kind of book one would enjoy, but I did enjoy it. I also think that I am also going to buy several copies and give them to people I know who are facing some tough illness or period in their lives. Not Fade Away is a blueprint for handling the ugliest kind of shit life can throw at you, with grace and guts and courage. Bravo Ms. Alexander!
March 2, 2020
This book is about the author's experience being diagnosed and living with Usher syndrome, a genetic condition that eventually results in permanent hearing & vision loss. The author is a psychotherapist, so her insights into the emotional impact of the disease on her life were particularly noteworthy. What stood out to me was 1) how much support she had from her family & friends, which was very helpful because she had no time nor energy to research Usher syndrome, clinical trials, etc. but they did it for her 2) her mixed feelings re: getting cochlear implants (she was not "all in" like you'd expect someone to be who is going deaf but has the opportunity to hear; sound with cochlear implants is very robotic/not natural, so "hearing" is not truly hearing, and she was worried about the impact of the implants on her physical appearance since you can see them from the outside) and 3) how she was first diagnosed at age 12 but it didn't really "sink in" until she was 19 and saw a doctor again because of tinnitus. It is very true that we humans can hear what we only want to hear.
December 24, 2019
Dear Not Fade Away,
There are time when a book comes along that just resonates perfectly with here I am in my life. You were that book for me. I am not someone who quotes or marks up books for powerful things, bit you had me wanting to do that, and often. Rebecca's life, while difficult, has shaped her to be such an inspiration (without her trying to be). I honestly think that every woman should read you. She will find a piece of herself within Rebecca; her dedication, her perseverance, her friendships, her sense of humor. She truly is everywoman.
There are time when a book comes along that just resonates perfectly with here I am in my life. You were that book for me. I am not someone who quotes or marks up books for powerful things, bit you had me wanting to do that, and often. Rebecca's life, while difficult, has shaped her to be such an inspiration (without her trying to be). I honestly think that every woman should read you. She will find a piece of herself within Rebecca; her dedication, her perseverance, her friendships, her sense of humor. She truly is everywoman.
May 1, 2019
audiobook
Just horrible: Just an immature story that was soooooooooooo bad that it overshadowed the compassion that we should have for others.
- Way too much fluff to make it a longer story
- Because this was intended for all of society, why profanity from an educated person?
- Constant use of "uptalk" Google it
- Reinforces opinion that people with mental health issues disproportionately become mental therapists
Just horrible: Just an immature story that was soooooooooooo bad that it overshadowed the compassion that we should have for others.
- Way too much fluff to make it a longer story
- Because this was intended for all of society, why profanity from an educated person?
- Constant use of "uptalk" Google it
- Reinforces opinion that people with mental health issues disproportionately become mental therapists
July 16, 2022
This definitely had great moments, but mostly was just a perfectly fine memoir about an exceptional person, rather than an exceptional memoir. I was expecting a lot more the to medical side of things, uncovering Alexander's diagnoses, but each time something new came up it was mostly a very quick sequence of: unexpected problem, doctors are concerned, lots of tests, diagnosis, sent on her way. Not much depth and detail. Instead the focus is on day to day life, relationships, jobs; which is all fine, but doesn't make it stand out from other memoirs very much.
February 3, 2021
Although Rebecca Alexander was diagnosed with a vision problem at age ten, and a hearing impairment at age thirteen, it took another six years until, during her first year at the University of Michigan, she learned that she had Usher syndrome, a rare genetic disorder that would eventually lead to total blindness and deafness. As was predicted, her sight and hearing continued to deteriorate, and by the time that her book concludes, she is using a cane and has opted for a cochlear implant.
Those would be challenges enough, but the summer before she was scheduled to enter college, Alexander -- disoriented after a drunken party evening -- fell backwards through her open bedroom window, landing on a patio some 27 feet below. She spent a month in the hospital, and she underwent numerous reconstructive surgeries plus a lot of physical therapy. By the next summer, however, she was working as a camp counselor, and at the end of that season she completed a five-mile competitive swim.
Alexander describes herself as "resilient", which is surely the case, although other adjectives spring readily to mind as well. Understandably, she strives to have as normal a life as possible (although hers has included bungee jumping and skydiving). Not only did she complete her college studies; she went on to receive two master's degrees from Columbia, and she now works as a therapist in New York City -- not the easiest environment for someone with her disabilities.
Alexander is completely forthright about the struggles she has faced. She's in demand as a professional, but her clients have to adjust to the fact that their therapist can barely see them. She has dated various men, but she is acutely aware of how her assistive hearing devices and increasingly narrow band of vision are likely to be viewed by prospective suitors. She allows herself periods of sadness, but
Those would be challenges enough, but the summer before she was scheduled to enter college, Alexander -- disoriented after a drunken party evening -- fell backwards through her open bedroom window, landing on a patio some 27 feet below. She spent a month in the hospital, and she underwent numerous reconstructive surgeries plus a lot of physical therapy. By the next summer, however, she was working as a camp counselor, and at the end of that season she completed a five-mile competitive swim.
Alexander describes herself as "resilient", which is surely the case, although other adjectives spring readily to mind as well. Understandably, she strives to have as normal a life as possible (although hers has included bungee jumping and skydiving). Not only did she complete her college studies; she went on to receive two master's degrees from Columbia, and she now works as a therapist in New York City -- not the easiest environment for someone with her disabilities.
Alexander is completely forthright about the struggles she has faced. She's in demand as a professional, but her clients have to adjust to the fact that their therapist can barely see them. She has dated various men, but she is acutely aware of how her assistive hearing devices and increasingly narrow band of vision are likely to be viewed by prospective suitors. She allows herself periods of sadness, but
. . . then I move on. I don't feel like the cards I've been dealt are unfair. I don't think that life is that complicated, and I know that pity is a trap that will deplete my self-esteem and take away time that I don't have to waste. I choose instead to be grateful: to be happy with what I have today, and to be optimistic about tomorrow. It's a conscious choice, and one that takes effort, but what's the alternative? What other choice do any of us have if we want to live our lives to the fullest? [p. 98]Chapters 49-53 are devoted to Alexander's investigation, and eventual acceptance, of a cochlear implant. Anyone who is in the market for such a device could read these pages profitably as a tutorial. Although the technology did significantly improve Alexander's speech comprehension, it took time and effort for her to adapt to it, and the natural voices that she once heard and treasured have forever been replaced by robotic-sounding digital inputs. In the final analysis, however, she is thankful for the advantages that medicine has provided to her, and although there is currently no cure in sight for her deteriorating vision (diagnosed as retinitis pigmentosa), she mentions some research that might eventually address it:
Waiting for advancements that will come eventually, soon enough, I hope, to help me, but I refuse to hold my breath. I have to live where I am and to be grateful for the sight that I have. [p. 298]Written in a highly informal style, Not Fade Away is honest and inspiring. And with America's just having exited a disastrous presidency, crowned by an annus horribilis, this book can serve as a pleasant and completely apolitical accompaniment to a positive and forward-looking new era.
October 16, 2022
Very good. She speaks well too!
February 17, 2019
She is beautiful, intelligent, young and active. She is also gradually losing her visual and auditory connections to the world. What must this be like? Rebecca Alexander tells her story in Not Fade Away, an inspirational walk through her challenging days, months and years of diminishing sight and hearing.
Her childhood and adolescence, while not exactly typical, will still ring familiar to many. There is her parent’s divorce, her inability to perform as well as her twin brother, and other details of petty blunders common to teens. But the stage is set differently for Ms. Alexander. The leitmotif of Usher Syndrome Type III, rare and without a cure, is like an intensity filter on the whole scene.
My heart went out to her most when she finally internalized the truth of her diagnosis, which wasn’t until she was at University of Michigan as an undergraduate student. She knew but she did not really know.. So many can connect to this slow-awakening to a very difficult truth, which, when acknowledged and accepted, does not feel gradual at all. It falls upon one like a thunderclap in that one moment of crystalline understanding. When you finally know. She impressed me throughout this book but so, so much in this section.
I love her mantra: Breath in peace, breath out fear. I have used it every day since I read the words in her book, and I’ve shared it with my own four kids.
This book is not just about Rebecca; it is also about the many lives which crossed hers and the ways that people have helped and cared along the way. It makes the reader feel hopeful for humanity.
Rebecca became a woman of depth, character and destiny because she had to silence the sound of her own ego in order to solve the practical problems of her rare genetic disorder. She has done some hard, hard work to defeat her own weaknesses and these weaknesses are not her loss of sight and hearing. She has to daily struggle against her own nature in order to maximize her effectiveness in life and her sense of agency. These things are the qualities which enable and ennoble her and others like her – people who have some glacier-like difference (disability) which cannot be minimized, erased or ignored.
You will fall in love with her page by page, as you witness her battle against frailty. She wins. She totally wins.
Her childhood and adolescence, while not exactly typical, will still ring familiar to many. There is her parent’s divorce, her inability to perform as well as her twin brother, and other details of petty blunders common to teens. But the stage is set differently for Ms. Alexander. The leitmotif of Usher Syndrome Type III, rare and without a cure, is like an intensity filter on the whole scene.
My heart went out to her most when she finally internalized the truth of her diagnosis, which wasn’t until she was at University of Michigan as an undergraduate student. She knew but she did not really know.. So many can connect to this slow-awakening to a very difficult truth, which, when acknowledged and accepted, does not feel gradual at all. It falls upon one like a thunderclap in that one moment of crystalline understanding. When you finally know. She impressed me throughout this book but so, so much in this section.
I love her mantra: Breath in peace, breath out fear. I have used it every day since I read the words in her book, and I’ve shared it with my own four kids.
This book is not just about Rebecca; it is also about the many lives which crossed hers and the ways that people have helped and cared along the way. It makes the reader feel hopeful for humanity.
Rebecca became a woman of depth, character and destiny because she had to silence the sound of her own ego in order to solve the practical problems of her rare genetic disorder. She has done some hard, hard work to defeat her own weaknesses and these weaknesses are not her loss of sight and hearing. She has to daily struggle against her own nature in order to maximize her effectiveness in life and her sense of agency. These things are the qualities which enable and ennoble her and others like her – people who have some glacier-like difference (disability) which cannot be minimized, erased or ignored.
You will fall in love with her page by page, as you witness her battle against frailty. She wins. She totally wins.
December 31, 2014
I got this book for the library, because I love Peter Alexander and had seen segments on the Today show about his sister Rebecca, who suffers from Usher syndrome which is robbing her sight and hearing. That being said, I wish I never would have read this book. I admired Rebecca a lot more before reading this book. It started off interesting, I even told a co-worker about this good book I am reading and then it was almost like she needed to fill pages. Seemed like we were stuck rehashing over and over again, same thoughts and feelings. Parents split, dad remarries, has baby, I was hoping to hear more about her twins struggles with depression. I just couldn't wait for this book to end.
May 17, 2016
Great memoir from a woman who has Usher syndrome, which causes her to go blind and deaf. She starts with her childhood and tracks the story all the way up until present day (she is 34). She is quite an inspiration and has done more with her life than most people without a disability. She explains in detail what it is like to live with reduced hearing or fading vision, which is obviously quite scary. I wish the book had spent a little more time on her family dynamics and relationships (she glosses over some things), but I otherwise very much enjoyed and would recommend.
November 9, 2016
Not Fade Away, A memoir of Senses Lost and Found, is nicely and movingly written, and surprisingly, possesses tremendous real cheerful humour. Despite her inevitable downward spiral of lost senses, the memoir contains not a shred of self-pity. Rebecca maintains a positive attitude throughout.
Read Full Review Here
Read Full Review Here
April 22, 2015
Good book, letting you inside the head of someone who is losing her sight and hearing due to a genetic disorder. Language issues, but still recommended.
January 22, 2015
Very inspiring memoir. When you think you've got it bad, read this book. Her ability to overcome her disabilities and to get the most out of what life has to offer is extraordinary.
July 18, 2020
Library Biography #59
“We all have the ability to appreciate and gather every bit of joy that we can from this world. We just forget to… I appreciate what I have, because I have less today than I had yesterday, and more than I will tomorrow.” ~ Rebecca Alexander
I enjoyed reading Alexander's memoir discussing her Usher Syndrome Type III describing her vision and hearing loss. The beginning of the book was a bit more interesting then the second half - Alexander is explaining her disease and her past and weaves in a lot about things she used to enjoy - from driving to waking up at camp by the sound of birds. Many of her memories of her early life are sad because the reader has to grapple with the fact the things she describes are things she can no longer experience (for the most part).
Once Alexander gets to the point where she moves to NYC, the book talks more of the present and to me there seemed to be less analysis on her senses lost and more about her coping with and allowing herself to rely on others for help as she progressively loses more. These chapters were harder for me to read, I think it was harder for me to understand how many of her memories of more present times had to do with her syndrome. However, I did watch a short Ted Talk that Alexander has on her website - she describes the necessity of relying on others. At that point I was able to understand the direction of the book.
This quote really brought out the tears:
“Sometimes I can’t help but wonder how it will be at the very end, though I try not to. Will I have a last clear image that I see, before my pinprick of a hole finally closes up forever? Or will things just blur more and more, an impressionist painting that gets increasingly less recognizable until finally it’s just a swirl of fading color, and then nothing? Will the last authentic sound I hear be a laugh, a cry, a subway rumbling into the station?” ~ Rebecca Alexander
“We all have the ability to appreciate and gather every bit of joy that we can from this world. We just forget to… I appreciate what I have, because I have less today than I had yesterday, and more than I will tomorrow.” ~ Rebecca Alexander
I enjoyed reading Alexander's memoir discussing her Usher Syndrome Type III describing her vision and hearing loss. The beginning of the book was a bit more interesting then the second half - Alexander is explaining her disease and her past and weaves in a lot about things she used to enjoy - from driving to waking up at camp by the sound of birds. Many of her memories of her early life are sad because the reader has to grapple with the fact the things she describes are things she can no longer experience (for the most part).
Once Alexander gets to the point where she moves to NYC, the book talks more of the present and to me there seemed to be less analysis on her senses lost and more about her coping with and allowing herself to rely on others for help as she progressively loses more. These chapters were harder for me to read, I think it was harder for me to understand how many of her memories of more present times had to do with her syndrome. However, I did watch a short Ted Talk that Alexander has on her website - she describes the necessity of relying on others. At that point I was able to understand the direction of the book.
This quote really brought out the tears:
“Sometimes I can’t help but wonder how it will be at the very end, though I try not to. Will I have a last clear image that I see, before my pinprick of a hole finally closes up forever? Or will things just blur more and more, an impressionist painting that gets increasingly less recognizable until finally it’s just a swirl of fading color, and then nothing? Will the last authentic sound I hear be a laugh, a cry, a subway rumbling into the station?” ~ Rebecca Alexander
February 21, 2018
Book Bingo Category: Through the Looking Glass
Pages: 300
This is a memoir about Rebecca Alexander, who has Usher syndrome type III. Usher syndrome type III is when you simultaneously lose your vision and hearing until you are completely blind and deaf. Rebecca was diagnosed with Usher syndrome type III when she was thirteen, and has been losing her vision and hearing ever since. She fell out of a window when she was eighteen and faced many challenges to recover. She refused to give up, and learned to appreciate what she has.
I gave this book 4 stars because it is inspiring and sends the message to not give up. Rebecca wakes up with less vision each day and is still able to be positive. She describes her story with humor, and makes you want to keep reading.
Pages: 300
This is a memoir about Rebecca Alexander, who has Usher syndrome type III. Usher syndrome type III is when you simultaneously lose your vision and hearing until you are completely blind and deaf. Rebecca was diagnosed with Usher syndrome type III when she was thirteen, and has been losing her vision and hearing ever since. She fell out of a window when she was eighteen and faced many challenges to recover. She refused to give up, and learned to appreciate what she has.
I gave this book 4 stars because it is inspiring and sends the message to not give up. Rebecca wakes up with less vision each day and is still able to be positive. She describes her story with humor, and makes you want to keep reading.
August 8, 2022
so so good everyone should read it
she's such an oversharer i relate to her sm in that aspect & now think i should write my own memoir purely bc of that 🫶🏻🫶🏻
i know these are real people but let's be honest here - she & adam need to get back together they are so in love. and if they don't, she needs to get a caroline bc they're basically in a relationship
there were so many good quotes i wished i had my highlighter for
i've heard the cochlear implants are very controversial?? want to read more about that
overall very educational & interesting & inspiring & honestly just revealing, you can tell it's very genuine bc if this is the stuff in her book, i have no idea what she actually kept private
she's such an oversharer i relate to her sm in that aspect & now think i should write my own memoir purely bc of that 🫶🏻🫶🏻
i know these are real people but let's be honest here - she & adam need to get back together they are so in love. and if they don't, she needs to get a caroline bc they're basically in a relationship
there were so many good quotes i wished i had my highlighter for
i've heard the cochlear implants are very controversial?? want to read more about that
overall very educational & interesting & inspiring & honestly just revealing, you can tell it's very genuine bc if this is the stuff in her book, i have no idea what she actually kept private
December 7, 2018
I stumbled upon this book, never having heard of it or the author. What a pleasant surprise!
This book reads like a friend sharing her story with you - a very powerful story that I am grateful for. This year I've put in active effort to practice gratitude and this book preaches gratitude with every page. I value a lot of the other messages in this book as well - the power and healing of human connection, the appreciation of silence, the importance of self-reflection, hard work, service to others, and growth.
I definitely recommend reading Not Fade Away and will be sharing it with my loved ones.
This book reads like a friend sharing her story with you - a very powerful story that I am grateful for. This year I've put in active effort to practice gratitude and this book preaches gratitude with every page. I value a lot of the other messages in this book as well - the power and healing of human connection, the appreciation of silence, the importance of self-reflection, hard work, service to others, and growth.
I definitely recommend reading Not Fade Away and will be sharing it with my loved ones.
July 26, 2023
I picked up this book for research regarding our daughter’s condition, which is the same as the authors. There was more discussion of sex and intimacy than I am typically comfortable with, even though it wasn’t explicit. And I don’t feel like the hardships of living life as a deafblind person were flushed out enough. I was hoping for more of the day by day struggles more so than the struggles being mostly social issues with friends and lovers. There were some gold nuggets that I hadn’t thought of, such as how food is huge with smell and taste being amplified, and how things like breaking glass and tripping over hazards on sidewalks are things to keep in mind for the future.
April 2, 2018
recommended by Robin. Actually would have given 3.5 stars. Rebecca Alexander has an engaging personality and has certainly experienced a life very different from my own, and so in that I did enjoy reading her book. The one down side to this book for me was its incessant optimism, that "it could be worse" feeling that rubs me raw. Certainly, that may be her authentic personality, her coping mechanism even, which might be perfectly understandable. It just felt relentless to me.... Personal opinion. A faster read than the dates indicate, it was set aside while preparing for a workshop.
October 30, 2019
I am blown away by the accomplishments of Rebecca Alexander. Diagnosed with the dreadful Usher syndrome as a teenager, she knew she would be blind and deaf by the time she was 30. In addition, she fell out of a 2nd story window and almost died.
Throughout all of this, she kept a positive attitude and fought to live a normal life. She lives independently and works as a psychotherapist and spin teacher. Her charm and sense of humor make her a great public speaker. Although she would hate to hear it, she is a real inspiration.
Throughout all of this, she kept a positive attitude and fought to live a normal life. She lives independently and works as a psychotherapist and spin teacher. Her charm and sense of humor make her a great public speaker. Although she would hate to hear it, she is a real inspiration.
July 27, 2024
rebecca’s shares her personal journey with a rare genetic condition as research for Usher Syndrome Type III was in its infancy. learned a lot from reading about her experiences as her eyesight and hearing deteriorates, and her life as she adjusts to her cochlear implant and her cane. the part about her brother’s mental health journey with bipolar was also really interesting, and i wish more was said more about that. some parts were slow, but her resilient attitude and warmth from all the love in her life is contagious, and i loved the overall message
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