Status
Available
Publication
New York, New York : Gotham, [2014]
Description
"The inspiring memoir of a young woman who is slowly losing her sight and hearing yet continues to live each day with grace and purpose. Thirty-four-year-old Rebecca Alexander is a psychotherapist, a spin instructor, a volunteer, and an athlete. She is also almost completely blind, with significantly deteriorated hearing. Not Fade Away is a deeply moving exploration of the obstacles we all face-physical, psychological, and philosophical. Like The Diving Bell and the Butterfly, Rebecca's story is an exquisite reminder to live each day to its fullest. When Rebecca was twelve, her parents were told that she would be completely blind before she turned thirty. At eighteen, she fell through a window, shattering her body. In college, she found out that due to a rare genetic disorder-Usher Syndrome Type III-she was losing her hearing as well. Since then, she has earned two Master's degrees from Columbia University, ridden a six-hundred-mile bike race, hiked the Inca Trail, and established a thriving career-all while maintaining a vibrant social life. In Not Fade Away, Rebecca charts her journey from a teenager who tried to hide her disabilities, to a woman who is able to face the world exactly as she is. She meditates on what she's lost-the sound of laughter and skies full of stars, which she can now only imagine (though, she quips, "It's not like anyone can see stars in New York anyway")-and what she's found in return: an exquisite sense of intimacy with family and friends who've stuck by her, and a profound appreciation for everything she still has. Even though Rebecca inhabits a gradually darkening world, she refuses to let that stop her from living life with joy and enthusiasm."--… (more)
User reviews
LibraryThing member akblanchard
Rebecca Alexander has Usher's Syndrome Type III. She is in her mid-thirties, and she has been coping with slowly-decreasing vision and hearing since her teens. This book chronicles her life so far and her thoughts about her encroaching blindness and deafness.
For convenience most libraries will
For example, when she was in her late teens, Ms. Alexander developed what she refers to as an eating disorder. She doesn't describe it beyond that broad phrase, and does not communicate what it was like or what caused it except for an ill-defined need for "control" (the go-to cause of all eating disorders). But this disorder must have been a significant part of her life, because she ultimately sought treatment for it in an intensive out-patient program (which she summarizes in a sentence or two). Now she says she has recovered. I really wanted to know more about this aspect of her life (for example, what does a body image problem feel like to someone with visual limitations? How, exactly, did she achieve recovery, which eludes many people with eating disorders?) but Ms. Alexander doesn't tell us.
Similarly, Ms. Alexander does not reveal what went wrong between her and the perfect man she thought she was going to marry (who still seems to be devoted to her, as she is to him), other than to say that they are "much better, and happier, as friends than [they] were as a couple" (p. 142). I can understand why she might want to keep some things vague to protect her privacy, but on the other hand, if you want privacy, don't write a book about yourself.
The book is at its best when Ms. Alexander does go into detail, such as when she describes her recovery from a disastrous fall when she was a teenager and her experience with getting a cochlear implant as an adult.
As I recently wrote about another, very different, book I reviewed (Savage Harvest by Carl Hoffman), how much you enjoy this book will depend on how much you enjoy spending time with its author.
For convenience most libraries will
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probably classify this book as an autobiography or memoir, but it really isn't either. Instead, I would say it is a book about Rebecca Alexander, and the experience of reading its 58 short chapters is closer to reading a blog than reading a linear narrative. At times the text is frustratingly vague, and does not contain the level of detail one would expect in a biography or memoir.For example, when she was in her late teens, Ms. Alexander developed what she refers to as an eating disorder. She doesn't describe it beyond that broad phrase, and does not communicate what it was like or what caused it except for an ill-defined need for "control" (the go-to cause of all eating disorders). But this disorder must have been a significant part of her life, because she ultimately sought treatment for it in an intensive out-patient program (which she summarizes in a sentence or two). Now she says she has recovered. I really wanted to know more about this aspect of her life (for example, what does a body image problem feel like to someone with visual limitations? How, exactly, did she achieve recovery, which eludes many people with eating disorders?) but Ms. Alexander doesn't tell us.
Similarly, Ms. Alexander does not reveal what went wrong between her and the perfect man she thought she was going to marry (who still seems to be devoted to her, as she is to him), other than to say that they are "much better, and happier, as friends than [they] were as a couple" (p. 142). I can understand why she might want to keep some things vague to protect her privacy, but on the other hand, if you want privacy, don't write a book about yourself.
The book is at its best when Ms. Alexander does go into detail, such as when she describes her recovery from a disastrous fall when she was a teenager and her experience with getting a cochlear implant as an adult.
As I recently wrote about another, very different, book I reviewed (Savage Harvest by Carl Hoffman), how much you enjoy this book will depend on how much you enjoy spending time with its author.
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LibraryThing member Pranamama5
Not Fade Away is memoir by Rebecca Alexander that tells the story of her triumphant spirit through trials and challenges of facing two medical conditions and their impact on her daily life. I recommend this especially to anyone facing overwhelming obstacles in their own life because where Not Fade
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Away shines is as an example of courage to keep striving for recovery and adaptation in the face of adversity. Show Less
LibraryThing member CarolynSchroeder
I absolutely loved this memoir by Rebecca Alexander. While it's easy to say it is about her Usher III disease (which is causing her to ebb into both blindness and deafness), it is about way more than that. She is a remarkable woman with a soothing and very real spirituality that honestly, made me
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forget entirely about her disabilities in many parts of the book! It is equally a life story about the value of friendships (canine and human), family and all kinds of different beauty in this world. It is also about being vulnerable, gracious enough to not only ask for help, but be help to others. I have actually been a little bit burnt out from memoirs, but this renewed my faith in the genre. Ms. Alexander does not try to be special, but in her way, she is exactly that. Highly recommended for everyone, but especially women who think they may be limited by societal "norms" or just feel the hardship of being a little bit different, whatever the reason. Show Less
LibraryThing member lgura
Not Fade Away tells the story of Rebecca Alexander's life from childhood to her mid-thirties. She has Usher Syndrome III, a condition that causes progressive loss of hearing and vision. Knowing that she will lose the full use of those senses over time, Rebecca reaches out for life with eagerness
In addition to the typical details of a girl-to-woman memoir, the reader learns about the types of Usher Syndrome, and approaches to living with two serious handicaps. Rebecca is able to maintain hearing with hearing aids, then later a cochlear implant, but what is most touching is how she must learn to use tactile signing as her sight recedes. This gives a special intimacy with those who share this language.
Some aspects of the memoir were mystifying. Rebecca was in a serious relationship with a man who is now one of her closest friends. She keeps pining for some kind of ideal man, and dreams of having a family some day. From what I could tell, this man was pretty darn great. We get very little explanation about why the relationship changed - - only some vague references to how he wanted to take care of her etc. Well he does as a very loving friend.
The most powerful part of the book is the period of time after Rebecca falls from the second story window, and wills herself to work extremely hard to recover and be able to join her brother at University of Michigan. This section really showcases what she is made of, sheer determination, positive spirit and grit.
Although a pleasant and informative read, I only gave this book three stars because the writing seemed somewhat amateurish to me. The chapters are very short, and at times read like a diary entry or brief update on a topic without depth. It is surprising a second writer was needed for this level of writing. I would recommend this for the experience of learning about a situation and condition that most of us do not encounter, but not as great literature.
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and gusto that is admirable and inspiring. She fully participates in academics, becoming a psychologist, loves athletics, and cherishes her family and friends. Her positive spirit helps her survive a fall from a second story window and months of recovery, a cross-country move to NYC, her longtime dream to be independent of automobiles, and drives her to advocate for herself and others. In addition to the typical details of a girl-to-woman memoir, the reader learns about the types of Usher Syndrome, and approaches to living with two serious handicaps. Rebecca is able to maintain hearing with hearing aids, then later a cochlear implant, but what is most touching is how she must learn to use tactile signing as her sight recedes. This gives a special intimacy with those who share this language.
Some aspects of the memoir were mystifying. Rebecca was in a serious relationship with a man who is now one of her closest friends. She keeps pining for some kind of ideal man, and dreams of having a family some day. From what I could tell, this man was pretty darn great. We get very little explanation about why the relationship changed - - only some vague references to how he wanted to take care of her etc. Well he does as a very loving friend.
The most powerful part of the book is the period of time after Rebecca falls from the second story window, and wills herself to work extremely hard to recover and be able to join her brother at University of Michigan. This section really showcases what she is made of, sheer determination, positive spirit and grit.
Although a pleasant and informative read, I only gave this book three stars because the writing seemed somewhat amateurish to me. The chapters are very short, and at times read like a diary entry or brief update on a topic without depth. It is surprising a second writer was needed for this level of writing. I would recommend this for the experience of learning about a situation and condition that most of us do not encounter, but not as great literature.
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LibraryThing member herzogm
I thoroughly enjoyed Not Fade Away because it has everything I look for in a good book; a believable story, a fascinating medical condition, the use of adaptive devices, and the development of coping skills. It even has a little genealogy when she discusses the part DNA plays in Usher Syndrome and
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her ultimate diagnosis. To top it all off, the author is able to analyze her situation and to own up to the times when she does and does not handle it well. I found it difficult to put down and found myself wanting to know more about Rebecca. Show Less
LibraryThing member dele2451
Rebecca Alexander's many significant accomplishments, her frankness about the difficulties of slowly going blind and deaf at a young age, and her hard work in the face of such a difficult diagnosis/prognosis--as well as the truly amazing contributions of her caregivers and advocates--are inspiring
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and worthy of a five. However, segments of the writing itself are not as strong as the young woman's personal achievements. I am very happy I had the opportunity to read Alexander's story, but I think it could have been an even more compelling read if presented by a more seasoned author. A definite recommend, especially for anyone prone to overindulging in self-pity. Show Less
LibraryThing member ValerieAndBooks
I requested this book through the Early Reviewers Program because the description immediately piqued my interest. The author of Not Fade Away is Rebecca Alexander, who has Usher Syndrome, which is a genetic disorder that causes the recipient to go through increasing degrees of blindness and
There's a lot I liked about this memoir. I learned the details about the different types of Usher Syndrome; Rebecca has type III. Type I is the one I'm more familiar with: those with it are profoundly deaf at birth (thus likely to be early sign-language users), then their sight begins to decline quickly. Type II is less severe: some hearing loss and keeping their vision until around the teen years. Type III, which is Rebecca's is the least severe and hearing and vision loss begins to happen slower and more subtly than the first two types. Still, Rebecca now uses a cane and a guide dog and hearing aids (along with a very recent cochlear implant). She also learned ASL; she uses it with many of her clients, as she is a psychotherapist. She is also extremely active -- she teaches several spin classes in NYC where she lives. She had moved to New York to attend Columbia University for grad school even when receiving a full-ride in her native California, realizing that California is for the most part much too car-reliant for someone who could no longer drive.
Alexander shares many recollections of her early life. These anecdotes often were engaging. Not all was rosy in addition to her vision and hearing declining -- her parents divorced, her twin brother developed mental issues, she had a fall from a high place that caused her to break nearly every bone in her body -- but the author shares this with no self-pity or melodrama. She also discusses her adult life -- she is still young (in her thirties), so it is clear that she is attempting to live her life to its fullest.
There's just a couple slight issues keeping Not Fade Away from getting a higher rating from me -- some typo errors (but this is an
advance uncorrected proof, so the typos may be gone by the time the book in print), and some chapters were so short as to seem like they were inserted randomly. I am also curious about the role of Alexander's co-author Sascha Alper. Was Alper merely the scribe -- did Alexander relate everything via voice -- how much writing did Alper actually take part in?
This book was a fairly quick read because I found it so interesting -- and one I'll definitely recommend to my friends who would also be interested in the topic.
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deafness. Being Deaf myself, I know a few people with Usher Syndrome, so I wanted to read this book.There's a lot I liked about this memoir. I learned the details about the different types of Usher Syndrome; Rebecca has type III. Type I is the one I'm more familiar with: those with it are profoundly deaf at birth (thus likely to be early sign-language users), then their sight begins to decline quickly. Type II is less severe: some hearing loss and keeping their vision until around the teen years. Type III, which is Rebecca's is the least severe and hearing and vision loss begins to happen slower and more subtly than the first two types. Still, Rebecca now uses a cane and a guide dog and hearing aids (along with a very recent cochlear implant). She also learned ASL; she uses it with many of her clients, as she is a psychotherapist. She is also extremely active -- she teaches several spin classes in NYC where she lives. She had moved to New York to attend Columbia University for grad school even when receiving a full-ride in her native California, realizing that California is for the most part much too car-reliant for someone who could no longer drive.
Alexander shares many recollections of her early life. These anecdotes often were engaging. Not all was rosy in addition to her vision and hearing declining -- her parents divorced, her twin brother developed mental issues, she had a fall from a high place that caused her to break nearly every bone in her body -- but the author shares this with no self-pity or melodrama. She also discusses her adult life -- she is still young (in her thirties), so it is clear that she is attempting to live her life to its fullest.
There's just a couple slight issues keeping Not Fade Away from getting a higher rating from me -- some typo errors (but this is an
advance uncorrected proof, so the typos may be gone by the time the book in print), and some chapters were so short as to seem like they were inserted randomly. I am also curious about the role of Alexander's co-author Sascha Alper. Was Alper merely the scribe -- did Alexander relate everything via voice -- how much writing did Alper actually take part in?
This book was a fairly quick read because I found it so interesting -- and one I'll definitely recommend to my friends who would also be interested in the topic.
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LibraryThing member egsanford
The story of Rebecca Alexander's life was incredible. She is truly an amazing person for keeping such a positive outlook on life and enjoying it in every way. This book was such a fast read for me, because it felt so much like Becky was just sitting there telling me stories for hours. Her voice is
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strong, familiar and funny. I was a bit bothered by the amount of typos in the book (I found about 20 or so) and the overuse of commas, but I understand that this is an advanced copy so hopefully those things will be fixed for the actual release. Overall, a great story that makes you appreciate what you have and want to work toward an outlook on life similar to Rebecca's! Show Less
LibraryThing member Amy_J
I found myself both crying and laughing (out loud) through much of the book, especially the second half as life begins to test just how strong a woman this is. I truly admire just how determined someone can be when she puts her mind and heart into it. I highly recommend this book to anyone who has
Through Rebecca's fading eyes and ears we learn to appreciate life's smallest miracles and gifts. A wonderful reminder to never take life for granted and to live in the now.
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had their own trials in life. This will remind you to just keep going. Through Rebecca's fading eyes and ears we learn to appreciate life's smallest miracles and gifts. A wonderful reminder to never take life for granted and to live in the now.
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LibraryThing member SuzReads
I received this book for free through LibraryThing Early Reviewers and really enjoyed it! I was hoping this book would motivate me to focus more on appreciating what I have because of this author's incredible journey and I was not disappointed! She doesn't dwell on what she has lost, just keeps a
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positive attitude and continues to do what it takes to achieve her goals without letting her obstacles limit her. I like the readable, matter-of-fact way the author shares her story and talks about how she tries to live each day to the fullest, without trying to convert you into her way of thinking. I would recommend this to anyone looking for a positive, engaging story! Show Less
LibraryThing member ponder
Adversity certainly can magnify our inherent personality. The author is truly an amazing, resilient woman. Although i felt I knew the author fairly well by the end of the story, I really wondered how well I knew myself and what my reaction to the same physical challenges would be.
Admittedly none
She is an amazing woman and an inspiration to always stay positive.
Admittedly none
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of my business, I wanted to know more about her patients, boyfriends, brother and best friend. All of the characters that are consistent in her world seem to have incredible meaning and value to her but you never feel that you get to know anyone in depth. Given that it is her first memoir, I thought it was good. Given her challenges, I thought it was wonderful. She is an amazing woman and an inspiration to always stay positive.
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LibraryThing member Daneece
What a moving book that evoked many emotions. Many times we think our problems are impossible to overcome but after reading this book you will find yourself humbled.
LibraryThing member jrquilter
This is a memoir of a young woman who has a genetic disorder that leads to blindness and hearing loss. She comes across as strong, independent and proud. She struggles with the fact that as the disease progresses, she will need more and more help. The writing is a little repetitious and amateurish,
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but overall a good read about an impressive woman. Show Less
LibraryThing member strandbooks
I couldn't put this book down. I really appreciated her attitude towards her situation and how she had little self-pity. At times it felt a little like an Oscar speech where she would spend paragraphs thanking someone for all that they did for her. I wonder how her family feels about the book
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especially the parts about her parents divorce. She was very open about that and her brother's mental illness but was really vague about the ending with her ex-boyfriend that left me wondering what had happened. I liked it enough to recommend to 2 other friends who I think will like it. Show Less
LibraryThing member RonStarcher
Rebecca Alexander shares her trials battling a progressive degenerative disease with which few are familiar, Usher Syndrome Type III. She is slowly losing her vision and hearing. I cannot imagine a more terrifying prospect than that. Ms. Alexander, however, faces the prospect with courage and
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humor. What we find in this account is the life of a normal woman, living life to the fullest, who just happens to be losing touch with a part of the world we all take for granted. I will never complain about my aches and pains again. Show Less
LibraryThing member 0315
This was any extremely well put together book. It has just the right mix of medical information, personal Spencerian, insight from friends and and family. I love that Rebecca is a realist with a splash of home and a dash of courage..........
LibraryThing member woodogmom
I received a free copy of Not Fade Away through the Library Thing Early Reviewers Program. All opinions expressed are my own.
I really liked this book. The author, Rebecca Alexander, is so genuine and open about the many things that she is losing (sight and hearing), all the while remaining positive
I really liked this book. The author, Rebecca Alexander, is so genuine and open about the many things that she is losing (sight and hearing), all the while remaining positive
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and upbeat and even witty. I can’t think of a more inspiring way to embrace the horrors of disease. Rebecca definitely sets a fine example of how to deal with adversity and not dwell on what’s lost by being full of gratitude for those things she still has. Excellent book! Show Less
LibraryThing member Lurar
This book focuses on the difficult journey of Mrs. Alexander. A story of what was lost and gained throughout many years of challenges. Diagnosed with a genetic disorder, where she will eventually lose her hearing and vision, Mrs. Alexander demonstrates what it truly is to not give up. Mrs.
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Alexander is a true role model to anyone out there that believes their world is falling apart. Show Less
LibraryThing member ginger72
The author is one heck of a lady ! I never once felt like she was playing the pity card. Where as if I was in her shoes I'm certain I would not handle things as well as she has. Overall I found things a little repetitive and on the slow side but give Ms. Alexander credit for putting it out
Note: Received in exchange for a review.
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there.Note: Received in exchange for a review.
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LibraryThing member em0451
Rebecca Alexander has Usher syndrome, which causes her to gradually lose her eyesight and hearing throughout her life until it is completely gone. This memoir tells her story from finding out the Usher diagnosis to describing what it is like to be in the middle of losing both her sight and hearing.
The idea of losing both sight and hearing, both at the same time, with no way to stop it from happening, is horrific. Reading Rebecca's story and learning more about her illness was interesting. However, the actual writing and telling of the story was less than stellar. The story was told somewhat chronologically but there were some chapters that felt very random. Overall, I found the pacing of the book to be very slow. I also felt like it was very repetitive, like she was explaining the same feelings over and over again.
I am glad that I read this book, as I had never heard of Usher syndrome before and I appreciate being made more aware of it and learning about Rebecca Alexander. However, I can't say that I really enjoyed the actual reading of the book much at all.
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The idea of losing both sight and hearing, both at the same time, with no way to stop it from happening, is horrific. Reading Rebecca's story and learning more about her illness was interesting. However, the actual writing and telling of the story was less than stellar. The story was told somewhat chronologically but there were some chapters that felt very random. Overall, I found the pacing of the book to be very slow. I also felt like it was very repetitive, like she was explaining the same feelings over and over again.
I am glad that I read this book, as I had never heard of Usher syndrome before and I appreciate being made more aware of it and learning about Rebecca Alexander. However, I can't say that I really enjoyed the actual reading of the book much at all.
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LibraryThing member grumpydan
Rebecca Alexander Usher S type III where she will gradually lose her sight and hearing. Yet, she doesn’t give up and accomplishes what she sets out to do and enjoy life every single minute of it. This is her story and although inspirational, it didn’t leave me all mushy inside. It is both
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serious and funny at times, but yet I felt I took nothing from her story. A quick read. Show Less
LibraryThing member ellasmeme
An inspiring account of a young woman facing life with the extreme challenge of knowing she would eventually live in a world of silence and darkness. Rebecca is a remarkable woman who faces her future with resilience and courage.
LibraryThing member AprilBrown
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
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
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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.
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LibraryThing member synecdouche
A smart, funny, sexy, and tender treatise on compassion and acceptance..
Everyone should read this book.
Everyone should read this book.
LibraryThing member Rob.Larson
It took me awhile to get into this book, but I did after about the first third of it. Fascinating and sad, this young lady is a very good example to everyone when it comes to endurance and resourcefulness. I admire her tenacity and how she continually looks for ways to make her life happy and
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productive. Good book for everyone, except perhaps very young persons. Show Less
ISBN
9781592408313
Local notes
autobiography