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Until I Say Goodbye: A Book about Living
In June 2011, Susan Spencer-Wendel learned she had amyotrophic lateral sclerosis (ALS)--Lou Gehrig's disease--an irreversible condition that systematically destroys the nerves that power the muscles. She was forty-four years old, with a devoted husband and three young children, and she had only one year of health remaining.
Susan decided to live that year with joy.
She quit her job as a journalist and spent time with her family. She built an outdoor meeting space for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She took her sons to swim with dolphins, and her teenage daughter, Marina, to Kleinfeld's bridal shop in New York City to see her for the first and last time in a wedding dress.
She also wrote this book. No longer able to walk or even to lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working.
However, Until I Say Good-Bye is not angry or bitter. It is sad in parts--how could it not be?--but it is filled with Susan's optimism, joie de vivre, and sense of humor. It is a book about life, not death. One that, like Susan, will make everyone smile.
From the Burger King parking lot where she cried after her diagnosis to a snowy hot spring near the Arctic Circle, from a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is not only Susan Spencer-Wendel's unforgettable gift to her loved ones--a heartfelt record of their final experiences together--but an offering to all of us: a reminder that "every day is better when it is lived with joy."
Susan decided to live that year with joy.
She quit her job as a journalist and spent time with her family. She built an outdoor meeting space for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She took her sons to swim with dolphins, and her teenage daughter, Marina, to Kleinfeld's bridal shop in New York City to see her for the first and last time in a wedding dress.
She also wrote this book. No longer able to walk or even to lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working.
However, Until I Say Good-Bye is not angry or bitter. It is sad in parts--how could it not be?--but it is filled with Susan's optimism, joie de vivre, and sense of humor. It is a book about life, not death. One that, like Susan, will make everyone smile.
From the Burger King parking lot where she cried after her diagnosis to a snowy hot spring near the Arctic Circle, from a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is not only Susan Spencer-Wendel's unforgettable gift to her loved ones--a heartfelt record of their final experiences together--but an offering to all of us: a reminder that "every day is better when it is lived with joy."
384 pages, Hardcover
First published January 1, 2012
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11814 people want to read
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Displaying 1 - 30 of 944 reviews
December 4, 2013
I am the author. Hope you all laugh more than you cry. -- Susan
December 4, 2013
I have been putting off writing this review because how does one criticize a book written using one finger on an iphone? Written by someone terminally ill with ALS? Someone whose positive attitude should be an inspiration to all of us. A writer - an award winning journalist? Not to worry, I'm not going to totally tear it apart. I enjoyed reading it and Spencer's honesty about and determination to cope with with its impact on her, her family, and her friends is laudable.
But here's my rub - this woman has money. Money to do whatever she wants for one year. Travel. Shop in NYC. Build a little hut near her pool in Florida. How many Americans in her position have been bankrupted by illness? And I'm not just talking about "poor" people. I'm talking about hard-working people who have worked full-time and scripmed and saved their entire lives just to see their savings vanish over unexpected and uncovered medical costs?
Plus, she has connections to get her book published by a major publisher (an imprint of Hodder & Stoughton/Hachette group). What sort of an advance did she get for that? They could at least have edited it so that there was less repetition and dropped prepositions. And there, folks, is where this book loses a star. It should be a three star book by GR standards because I recommend it the proper audience and that is a large audience. However, the editing is shoddy and her style didn't wow me, she is a journalist, not a memoirist. Sorry. I'm just being honest.
But here's my rub - this woman has money. Money to do whatever she wants for one year. Travel. Shop in NYC. Build a little hut near her pool in Florida. How many Americans in her position have been bankrupted by illness? And I'm not just talking about "poor" people. I'm talking about hard-working people who have worked full-time and scripmed and saved their entire lives just to see their savings vanish over unexpected and uncovered medical costs?
Plus, she has connections to get her book published by a major publisher (an imprint of Hodder & Stoughton/Hachette group). What sort of an advance did she get for that? They could at least have edited it so that there was less repetition and dropped prepositions. And there, folks, is where this book loses a star. It should be a three star book by GR standards because I recommend it the proper audience and that is a large audience. However, the editing is shoddy and her style didn't wow me, she is a journalist, not a memoirist. Sorry. I'm just being honest.
April 2, 2018
When the author was diagnosed with ALS she decided she wouldn’t spend her remaining time going to endless doctor’s appointments in an attempt to delay the inevitable. She made a conscious choice to spend a year crossing off items on her bucket list and making memories with the special people in her life.
Susan’s book is part travel journal but along the way we get a glimpse into her family, which includes meeting her birth mother for the first time, parenting a child with Asperger's Syndrome, and getting a puppy. Most of it was typed on her iphone using only her thumb, the last digit she can still control.
Susan writes about living with joy and accepting what is, not what we would wish. “Our decision to just be. Accept. Live with joy anyhow. And die with joy, too”. Susan doesn’t shy away from the physical realities of living with ALS, and while I’m heartbroken for her and her family, mostly I am moved by Susan’s courage, strength, positive attitude and sense of humor. She has left a legacy to her children, not of how to die, but how to live with joy and gratitude.
Susan’s book is part travel journal but along the way we get a glimpse into her family, which includes meeting her birth mother for the first time, parenting a child with Asperger's Syndrome, and getting a puppy. Most of it was typed on her iphone using only her thumb, the last digit she can still control.
Susan writes about living with joy and accepting what is, not what we would wish. “Our decision to just be. Accept. Live with joy anyhow. And die with joy, too”. Susan doesn’t shy away from the physical realities of living with ALS, and while I’m heartbroken for her and her family, mostly I am moved by Susan’s courage, strength, positive attitude and sense of humor. She has left a legacy to her children, not of how to die, but how to live with joy and gratitude.
June 11, 2020
I found this truly inspiring. It's a book about how Susan Spencer-Wendel celebrated the last year of her active life. She had been diagnosed with amyotrophic lateral sclerosis when she was forty-four. It's a muscle wasting disease which finally renders its victims completely helpless, literally unable to lift a finger.
Far from caving in under this diagnosis, Susan decided to celebrate her final year of active life by having various adventures with her closest friends and family.
To start with she handed in her notice as a journalist with the Palm Beach Post in Florida. It was a big wrench to give up on her years of work as a court reporter, but as is obviously throughout the book, she was determined to try and be positive, rather than dwell on her losses. Quite a lot of us may try and follow this sort of philosophy in our lives, but when you see it being played out in circumstances that most of us would find so overwhelming, it has a big impact.
She took herself and her children to swim with dolphins. She went to Budapest with her husband for their wedding anniversary. She took Wesley, her son with autism, to Cape Canaveral to see the Atlantis space shuttle launch. She went to the Yukon Territory with her best friend Nancy, to see the aurora. (It didn't happen, but they had a fabulous time.) She even took her 14 year old daughter to Kleinfeld's bride wear shop in New York, to get an insight as to how her daughter would look like in the future, on her wedding day. Having been adopted as a child, she also went on an adventure to find her natural birth mother, and then afterwards she travelled to the Mediterranean, to meet the Cypriot family of her now deceased natural father. They welcomed and embraced her.... It truly was a year of adventure.
Most of all, throughout the book, I picked up on the wonderful relationship she had with her friends, her husband John and the rest of her family.
Susan ended up writing the final parts of the book on her iPhone, as she could now only cope by holding the phone in her left hand, and using her right hand thumb to type the letters.
This book is an amazing tribute to life lived with passion, and what a wonderful heirloom for her family. It was a real joy to read the book and get to know something of this courageous woman.
Far from caving in under this diagnosis, Susan decided to celebrate her final year of active life by having various adventures with her closest friends and family.
To start with she handed in her notice as a journalist with the Palm Beach Post in Florida. It was a big wrench to give up on her years of work as a court reporter, but as is obviously throughout the book, she was determined to try and be positive, rather than dwell on her losses. Quite a lot of us may try and follow this sort of philosophy in our lives, but when you see it being played out in circumstances that most of us would find so overwhelming, it has a big impact.
She took herself and her children to swim with dolphins. She went to Budapest with her husband for their wedding anniversary. She took Wesley, her son with autism, to Cape Canaveral to see the Atlantis space shuttle launch. She went to the Yukon Territory with her best friend Nancy, to see the aurora. (It didn't happen, but they had a fabulous time.) She even took her 14 year old daughter to Kleinfeld's bride wear shop in New York, to get an insight as to how her daughter would look like in the future, on her wedding day. Having been adopted as a child, she also went on an adventure to find her natural birth mother, and then afterwards she travelled to the Mediterranean, to meet the Cypriot family of her now deceased natural father. They welcomed and embraced her.... It truly was a year of adventure.
Most of all, throughout the book, I picked up on the wonderful relationship she had with her friends, her husband John and the rest of her family.
Susan ended up writing the final parts of the book on her iPhone, as she could now only cope by holding the phone in her left hand, and using her right hand thumb to type the letters.
This book is an amazing tribute to life lived with passion, and what a wonderful heirloom for her family. It was a real joy to read the book and get to know something of this courageous woman.
April 2, 2013
"Imagine your body slowly becoming paralyzed; trapping you inside of a you that once ran, danced, and made love. Now, imagine coming to terms with your life and its ending. Susan's journey calls upon you to love with all your soul."
~ Luis Carlos Montalván, Author of the New York Times Bestseller, Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him
~ Luis Carlos Montalván, Author of the New York Times Bestseller, Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him
March 24, 2013
When I picked this up, I, for some reason, anticipated a cross between Tuesdays with Morrie and Eat, Pray, Love. It's not either of those books, and perhaps that's why I found it disappointing. I expected something different--a moving tale full of deep insights about what it's like to face a premature death. While there are definitely some beautiful insights, I came away feeling as if the book was rushed, perhaps for good reason. It reads like a first draft, one that could have been smoothed and polished into a gripping, moving tale...but wasn't. The raw material is there, but it never got the editing it needs to make it shine. Due to the progression of the author's disease and possibly to the fact that she typed a lot of the book using just her thumb, much of the needed editing and rewriting never seems to have happened. So the book goes back and forth in time, which gets confusing in places. There are sections that could have had much more impact. For instance there's a scene when the author's son is caught in an elevator and she can't get out of bed to help. She's stuck in bed listening to his cries for help and must rely on others in the house to help him. It ends with her learning that he's okay, but there's no realization. She doesn't explore what that moment means--how she'll have to trust the others around her more and more to do her job as mother--and how she will come to terms with that. I came away liking the author and wanting only happiness and peace for her and her family, but I can't say I came away feeling as if my time with the book was well spent.
July 19, 2013
The author, a journalist in Florida and mother of three, was diagnosed with ALS at 44 years old. Deciding that she had about a year of health, more or less, left, she decided to live it with joy and pack it with as much travel, family time, friends, and fun as possible. She takes her Asperger’s son to swim with dolphins, has her 14-year-old daughter try on wedding dresses at Kleinfeld’s (on the premise that she will not live to see the real thing), finds her roots in Cyprus, tries to see the northern lights in the Yukon, and vacations in the Bahamas. She also writes a book, of course, tapping it out with her thumb on an iPhone.
This is an extraordinary journal of positivity, adventure, hope, and love. It’s absolutely tear-jerking in some places, and only a bitter curmudgeon would criticize it. So here I go. First and foremost, this is a family diary; it is a tribute to herself, for her children. I don’t question in the least the need for this tribute for her family, but I’m not sure that there’s a wider purpose here beyond family closure, as there was with the similar The Last Lecture. And I certainly could have been content for her family euphemism for defecation, “stink pickle,” to stay in the family. There’s also a disjointed chronology which means some parts get told twice; surely her co-writer could have tightened this up? Finally, this may be needlessly picky, but Spencer-Wendel seems incredibly naïve about a lot of things, which distracts from the book’s main point. How can an award-winning journalist in her forties, a mother of three with a master’s degree, not have ever even heard of ALS or Asperger’s, much less Cyprus’ Green Line? I found that very odd. Okay, heartless criticism over. Spencer-Wendel’s an undeniably brave woman, and her Buddhist-like wisdom (remove needless want, and you remove pain; don’t fear merely possible negative repercussions, but embrace adventure) is inspiring; I’m glad for her that she got a movie and book deal for her family’s security, even if I find the book a bit too personal to be truly affecting.
This is an extraordinary journal of positivity, adventure, hope, and love. It’s absolutely tear-jerking in some places, and only a bitter curmudgeon would criticize it. So here I go. First and foremost, this is a family diary; it is a tribute to herself, for her children. I don’t question in the least the need for this tribute for her family, but I’m not sure that there’s a wider purpose here beyond family closure, as there was with the similar The Last Lecture. And I certainly could have been content for her family euphemism for defecation, “stink pickle,” to stay in the family. There’s also a disjointed chronology which means some parts get told twice; surely her co-writer could have tightened this up? Finally, this may be needlessly picky, but Spencer-Wendel seems incredibly naïve about a lot of things, which distracts from the book’s main point. How can an award-winning journalist in her forties, a mother of three with a master’s degree, not have ever even heard of ALS or Asperger’s, much less Cyprus’ Green Line? I found that very odd. Okay, heartless criticism over. Spencer-Wendel’s an undeniably brave woman, and her Buddhist-like wisdom (remove needless want, and you remove pain; don’t fear merely possible negative repercussions, but embrace adventure) is inspiring; I’m glad for her that she got a movie and book deal for her family’s security, even if I find the book a bit too personal to be truly affecting.
April 28, 2013
Let me be clear about this: Susan, as a person, deserves 5+ stars for being fearless (to borrow her description in the book), courageous, inspiring. Her story is incredibly sad and despite a horrific prognosis, she chose life. The book, however, is disjointed--overall, and within each chapter--and I expected a lot more from an award winning journalist. I really felt this only deserved two stars for the writing quality but gave it three since she wrote it on her phone. I feel like the wicked witch, leaving this review, for again, Susan is simply amazing! But this is a book, and phrasing, tone, and quality do matter.
September 14, 2014
I really wanted to like this book. After all it is a true story, written by someone who is really dying. It would be cruel, and heartless, to not like this book, far more to criticise it, not so? But I didn't like it.
I was looking for a book that I could have empathised with the author. It started out great. I felt her pain. I felt her uncertainty. I felt her sorrow... then it went downhill soon after.
It started with all the jet setting, then all the demands on her family, and friends, and on her husband. No matter what, she had to get her way. She needs the ceiling painted, does she hire a painter (it's not like she doesn't have the money), no, she asks her seventy-something dad to do it for her. Constantly I didn't feel acceptance or enlightenment, instead I felt the author's utter selfishness and conceit.
I can't fathom what it would be like to be in her position, and I do admire that it did not stop her from doing anything, even writing this book. But this book is not inspirational, and I am sure many people in her position would not be able to fly all around the world, or visit the Yukon, or even get a book published.
I have no idea as to who I can recommend this book for, but if you're looking for inspiration, this is not the book to find it.
I was looking for a book that I could have empathised with the author. It started out great. I felt her pain. I felt her uncertainty. I felt her sorrow... then it went downhill soon after.
It started with all the jet setting, then all the demands on her family, and friends, and on her husband. No matter what, she had to get her way. She needs the ceiling painted, does she hire a painter (it's not like she doesn't have the money), no, she asks her seventy-something dad to do it for her. Constantly I didn't feel acceptance or enlightenment, instead I felt the author's utter selfishness and conceit.
I can't fathom what it would be like to be in her position, and I do admire that it did not stop her from doing anything, even writing this book. But this book is not inspirational, and I am sure many people in her position would not be able to fly all around the world, or visit the Yukon, or even get a book published.
I have no idea as to who I can recommend this book for, but if you're looking for inspiration, this is not the book to find it.
March 18, 2013
Beautifully told and such an inspiration. I would read it again to remind myself to live in the moment and cherish all that comes my way.
April 7, 2024
Until I Say Goodbye by Susan Spencer-Wendel is an incredibly moving and inspiring memoir that touched my heart in ways I never expected. Susan's courageous journey through her battle with ALS is a testament to the strength of the human spirit and the power of love.
From the very first page, I was captivated by Susan's raw and honest storytelling. Her humor, resilience, and unwavering positivity in the face of such a devastating disease is truly awe-inspiring. I found myself laughing, crying, and feeling a deep sense of gratitude for the preciousness of life.
Susan's deep love for her family and friends shines through every page, and her determination to make the most of the time she has left is truly inspiring. Her ability to find beauty and joy in the simplest moments is a powerful reminder to cherish every day and live life to the fullest.
Susan's story is a reminder to never take anything for granted and to always choose love and gratitude in the face of adversity. I highly recommend this book to anyone looking for a powerful and uplifting read.
From the very first page, I was captivated by Susan's raw and honest storytelling. Her humor, resilience, and unwavering positivity in the face of such a devastating disease is truly awe-inspiring. I found myself laughing, crying, and feeling a deep sense of gratitude for the preciousness of life.
Susan's deep love for her family and friends shines through every page, and her determination to make the most of the time she has left is truly inspiring. Her ability to find beauty and joy in the simplest moments is a powerful reminder to cherish every day and live life to the fullest.
Susan's story is a reminder to never take anything for granted and to always choose love and gratitude in the face of adversity. I highly recommend this book to anyone looking for a powerful and uplifting read.
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June 11, 2020Let me start by saying that I am neither capable nor even allowed to pass judgement on such a personal memoir, thus Until I Say Good-Bye presents quite a paradox for me. I'm going to give my perspective without a rating. I admire Susan Spencer-Wendel for many characteristics - her ability to live with ALS unflinchingly, her humor, grace, acceptance, desire, and perseverance in writing the book. The author states, "First and foremost, I wrote the book for my family and friends to have, to jog their memories after I'm gone." In this capacity, she succeeds immensely. In the face of her rapid neuromuscular decline until she is left with only the ability to type with her right thumb on her iphone, she manages to write this book with the help of Bret Witter.
The paradox for me is that I think this book is most successful as a very personal memoir, for the author's children, family, and friends, but the publication of this book, along with a movie deal, will allow Spencer-Wendel and her family the ability to "Live with joy. And die with joy, too.” This is such an intensely personal story that while I can admire the author, I don't think I can ever really understand her circumstances along with those of her family. It does serve as a reminder of how lucky most of us are, something which we will most likely not be able to acknowledge so personally until we experience our own unlucky circumstances.
The paradox for me is that I think this book is most successful as a very personal memoir, for the author's children, family, and friends, but the publication of this book, along with a movie deal, will allow Spencer-Wendel and her family the ability to "Live with joy. And die with joy, too.” This is such an intensely personal story that while I can admire the author, I don't think I can ever really understand her circumstances along with those of her family. It does serve as a reminder of how lucky most of us are, something which we will most likely not be able to acknowledge so personally until we experience our own unlucky circumstances.
August 19, 2013
I read this book in several days. I did not want to put it down. It was so well written. We will all die and we have a choice as to how we spend our final days. Susan chose to spend it in joy, but she also acknowledges her deep sadness in leaving her children and her husband too soon.
I remember when they did a fundraiser for ALS at the SF Giants AT and T Park baseball stadium and I saw several young children around 15-20 years old who had the disease but were still healthy. I could feel their pain and anguish and their parents as well. ALS is an awful progressive disease where your body dies slowly, one muscle and nerve at a time.
Susan puts a spin on it that I did not expect. She shares her anguish and that of her husband and children, but the main focus of the book is on how to live well with the time she has left.
She makes a clear decision not to spend her time in therapy and hospitals, but living life as fully as she can. I love how she explores her roots with her birth father in Cyprus and takes time to go through her photographs for her children. She creates a special Chickee hut in her backyard where she can lounge and enjoy the beauty of nature. She also takes a trip with each person she is close to--her son, daughter, husband, sister and dear friend.
Those are all things I would want to do if I knew death was near. And, of course, they are things I should do now--as soon as I can--because none of us know how long we have.
The book is a wonderful reminder to live in the moment, to have the strength to live with uncertainty and to let go of what you can no longer do. She talks, for example, of no longer being able to swim and letting it go..focusing instead on what she can do and can enjoy.
The book helps me to remember that when I get frustrated because my knee does not work as well as I would like, or I don't have as much energy as I want--to let that go and appreciate the general health that I do have--life is such a gift.
Thank you Susan for writing this book. It is a true gift to me and to the world. I feel like I really got to know you through this book and to care about you and your family. Blessings to all of you.
I remember when they did a fundraiser for ALS at the SF Giants AT and T Park baseball stadium and I saw several young children around 15-20 years old who had the disease but were still healthy. I could feel their pain and anguish and their parents as well. ALS is an awful progressive disease where your body dies slowly, one muscle and nerve at a time.
Susan puts a spin on it that I did not expect. She shares her anguish and that of her husband and children, but the main focus of the book is on how to live well with the time she has left.
She makes a clear decision not to spend her time in therapy and hospitals, but living life as fully as she can. I love how she explores her roots with her birth father in Cyprus and takes time to go through her photographs for her children. She creates a special Chickee hut in her backyard where she can lounge and enjoy the beauty of nature. She also takes a trip with each person she is close to--her son, daughter, husband, sister and dear friend.
Those are all things I would want to do if I knew death was near. And, of course, they are things I should do now--as soon as I can--because none of us know how long we have.
The book is a wonderful reminder to live in the moment, to have the strength to live with uncertainty and to let go of what you can no longer do. She talks, for example, of no longer being able to swim and letting it go..focusing instead on what she can do and can enjoy.
The book helps me to remember that when I get frustrated because my knee does not work as well as I would like, or I don't have as much energy as I want--to let that go and appreciate the general health that I do have--life is such a gift.
Thank you Susan for writing this book. It is a true gift to me and to the world. I feel like I really got to know you through this book and to care about you and your family. Blessings to all of you.
November 10, 2013
An easily readable book on a tough topic.
This memoir recounts the experience of a 44-year-old woman diagnosed with ALS. Instead of giving into self-pity, Susan Spencer-Wendel makes a conscious choice to live out her remaining time with joy -- taking trips she's always wanted to take with the people she loves and forming happy memories, even as her functioning declines. Naturally, reading about Susan's deteriorating health and bleak prognosis was painful. But I feel this is an important book to read for people who, like me, need to be reminded to appreciate what they have.
The book wasn't perfect, and I considered a three-star rating at times. The narrative sagged occasionally, weighted down by details which were probably more interesting to live through than to read about -- an occupational hazard of writing and reading memoirs in general. Also, while I recognize that this surely says a lot more about me than it does about Susan, while I fully admired Susan's bravery and positive attitude, I also felt that I couldn't completely relate. Boy, would I be a wreck if this happened to me. There was some acknowledgement of Susan's considering suicide and feeling discouraged, but a lot more emphasis was placed on her positive attitude and successful insistence on restraining her urge to complain and always seeing the glass as half-full. When I read about someone who displays so much more courage than I would have, part of me is in awe and part of me feels a bit distanced, like I can't relate to someone who would have done so little griping and complaining. But again, that's me, not the book, and Susan has set a powerful example for those of us not suffering terminal illness but rather, the myriad little hassles of life.
Four stars. A quick read. An important lesson.
This memoir recounts the experience of a 44-year-old woman diagnosed with ALS. Instead of giving into self-pity, Susan Spencer-Wendel makes a conscious choice to live out her remaining time with joy -- taking trips she's always wanted to take with the people she loves and forming happy memories, even as her functioning declines. Naturally, reading about Susan's deteriorating health and bleak prognosis was painful. But I feel this is an important book to read for people who, like me, need to be reminded to appreciate what they have.
The book wasn't perfect, and I considered a three-star rating at times. The narrative sagged occasionally, weighted down by details which were probably more interesting to live through than to read about -- an occupational hazard of writing and reading memoirs in general. Also, while I recognize that this surely says a lot more about me than it does about Susan, while I fully admired Susan's bravery and positive attitude, I also felt that I couldn't completely relate. Boy, would I be a wreck if this happened to me. There was some acknowledgement of Susan's considering suicide and feeling discouraged, but a lot more emphasis was placed on her positive attitude and successful insistence on restraining her urge to complain and always seeing the glass as half-full. When I read about someone who displays so much more courage than I would have, part of me is in awe and part of me feels a bit distanced, like I can't relate to someone who would have done so little griping and complaining. But again, that's me, not the book, and Susan has set a powerful example for those of us not suffering terminal illness but rather, the myriad little hassles of life.
Four stars. A quick read. An important lesson.
September 5, 2013
Yes, I know that the number of stars I gave this book is lower than the average given by other readers, but hear me out. I think Spencer-Wendel is a very brave woman for being able to still get out there and live her life despite slowly being robbed of every single thing the human body can do (except for thinking). Gradually she is being locked into an infantile, dependent body, riddled with ALS (Lou Gehrig's disease). She sets out to spend her last relatively healthy year accomplishing some things: finding out about her birth parents and taking trips to various spots around the world with family and friends.
What I wish she had done more of in this book is talk about her experience of the disease, rather than just bucking up and being brave. I think the losses she was encountering were every bit as important to the story as were the discoveries outside the disease. She was so careful to not slip into self-pity that she left out something I think is crucial to a memoir of this kind.
Still, it's a good read, filled with one woman's idea of what to do in the face of death. Not everyone approaches death the same way. Some might decide to end it all with a diagnosis like this. She chose to live through it and be there, especially for her children.
I do have to say, though, the episode of taking her 14-year-old daughter to Kleinfeld's was painful to read. Big mistake.
What I wish she had done more of in this book is talk about her experience of the disease, rather than just bucking up and being brave. I think the losses she was encountering were every bit as important to the story as were the discoveries outside the disease. She was so careful to not slip into self-pity that she left out something I think is crucial to a memoir of this kind.
Still, it's a good read, filled with one woman's idea of what to do in the face of death. Not everyone approaches death the same way. Some might decide to end it all with a diagnosis like this. She chose to live through it and be there, especially for her children.
I do have to say, though, the episode of taking her 14-year-old daughter to Kleinfeld's was painful to read. Big mistake.
November 4, 2018
I feel really guilty about giving this book a two-star review, since it is literally a dying woman's memoirs, and obviously the writing process provided her with much needed comfort.
Susan Spencer-Wendel was diagnosed with ALS in 2011, and died in 2014, a year after this book was published. She begins the book by informing her readers that she has chosen to live fiercely, accepting her imminent death and embracing with open arms the life she has left to live. She travels extensively, visiting Canada, New York, Hungary, and Greece. She builds a Chickee hut in her backyard, where she plans to spend her remaining days in the Florida sun, writing her book on her iPhone and spending time with her family. She gracefully decides to enter hospice, where she eventually dies. Not all Susan's experiences in her final years require money, but I did get a bad taste in my mouth as Susan extols how she is able to live her short life to the fullest, as made possible by her financial resources.
Susan was a journalist, and while I did not read any of her professional work, I am shocked by the writing style of her memoirs. Perhaps this book would have been better as a blog or similar format, as it is written in short chapters/posts and conversational in tone. The casual, chatty voice of Susan's memoirs cheapens her message and adds an undertone of insincerity.
The call to living life to the fullest and being grateful every day, even while facing death at a tragically young age, is incredibly important. Susan was indeed very brave to face ALS with such an attitude, and I applaud her for this strength. She wrote this book in a rush, and in the end was writing on her iPhone Notes app. However, I do wish an editor had scrubbed her manuscript a bit more thoroughly.
Susan Spencer-Wendel was diagnosed with ALS in 2011, and died in 2014, a year after this book was published. She begins the book by informing her readers that she has chosen to live fiercely, accepting her imminent death and embracing with open arms the life she has left to live. She travels extensively, visiting Canada, New York, Hungary, and Greece. She builds a Chickee hut in her backyard, where she plans to spend her remaining days in the Florida sun, writing her book on her iPhone and spending time with her family. She gracefully decides to enter hospice, where she eventually dies. Not all Susan's experiences in her final years require money, but I did get a bad taste in my mouth as Susan extols how she is able to live her short life to the fullest, as made possible by her financial resources.
Susan was a journalist, and while I did not read any of her professional work, I am shocked by the writing style of her memoirs. Perhaps this book would have been better as a blog or similar format, as it is written in short chapters/posts and conversational in tone. The casual, chatty voice of Susan's memoirs cheapens her message and adds an undertone of insincerity.
The call to living life to the fullest and being grateful every day, even while facing death at a tragically young age, is incredibly important. Susan was indeed very brave to face ALS with such an attitude, and I applaud her for this strength. She wrote this book in a rush, and in the end was writing on her iPhone Notes app. However, I do wish an editor had scrubbed her manuscript a bit more thoroughly.
January 19, 2013
A very moving and touching story. Susan (the author) has ALS. Even as she is writing this book, her muscles and nerves are deteriorating. Eventually she will die. But even with her right thumb the only functioning digit, she taps this story away on her iPhone. It's the story of her life, molded into the perspective of someone seeing the end come too soon. And as she accepts her diagnosis, she decides to live joyfully in spite of it all.
Have you complained about something today? Or have you rejoiced in the opportunities you've had? Sure life isn't easy, but it could be much harder. And if you read this book, it will change your whole perspective on "harder." And you will realize that you have the power to determine how you feel about anything that comes your way. YOU can make a difference.
This was a beautiful book. Susan perfectly blended the last years of her life - dealing with symptoms and finally the death sentence, with the things that had shaped her and prepared her for this time. And then she grabbed the proverbial brass ring to ride with joy to the end - painting memories for her family into the sunset of her life.
I fell in love with Susan's spirit, her sense of adventure and the love she has for everyone around her. I will recommend this book to everyone!!!!
Look for it's release in March of 2013.
Note: I received a copy of this book from the publisher. All opinions expressed are my own.
Have you complained about something today? Or have you rejoiced in the opportunities you've had? Sure life isn't easy, but it could be much harder. And if you read this book, it will change your whole perspective on "harder." And you will realize that you have the power to determine how you feel about anything that comes your way. YOU can make a difference.
This was a beautiful book. Susan perfectly blended the last years of her life - dealing with symptoms and finally the death sentence, with the things that had shaped her and prepared her for this time. And then she grabbed the proverbial brass ring to ride with joy to the end - painting memories for her family into the sunset of her life.
I fell in love with Susan's spirit, her sense of adventure and the love she has for everyone around her. I will recommend this book to everyone!!!!
Look for it's release in March of 2013.
Note: I received a copy of this book from the publisher. All opinions expressed are my own.
February 21, 2013
I cannot recommend this book highly enough. Reading the description may make you think: Oh, no, too depressing. But this is truly one of the most inspiring books I have read in a good while. Susan Spencer-Wendel lets us in on a year of her life, that is sadly likely to be close to the end of her time here, where she chooses time and time again to live in and with joy, despite the challenges thrown in her path. And on top of all that, she keeps a sense of humor.
I was so so so honored to have narrated this book.
I was so so so honored to have narrated this book.
November 14, 2024
I count put this book down and sobbed out loud a few times towards the end. What an amazing person to have been so strong to live her remaining years with such passion. It reminded me to never take anything for granted and to keep my own difficulties in perspective.
July 20, 2013
Our book group is reading this and I have been unable to put it down. How do we face any challenge? Where does our strength of will, character and the ability to face another set back emanate from? What would I do with a year or with two? How do I dare feel hopeless at times? I love the fact she remains concerned about beauty, appearances, and works to feel like she hasn't lost everything she "is". How do you fit into the universe? What is the purpose of living well? Thank you, Susan, for giving me a perspective to consider. We ,too, have a friend with an ALS-type affliction. You have given her and us a gift.
May 24, 2018
Truly inspirational and thought inspiring. Highly recommended.
April 2, 2013
I almost never give a book 5 stars, but "amazing" describes this book exactly.
I heard of Susan via one of my favorite features in The Week Magazine---a spotlight on a specific author and their favorite books. I liked her choices, and her own memoir was described as being about "making the most of her remaining time" after her diagnosis of ALS at age 44.
She was an investigative reporter, and when she describes some of the horror she witnessed and reported on during her 20 years on that beat in Florida, the unsentimental tone she writes with makes much more sense. She is a 'get-it-done' woman,a no-nonsense realist who decides to do what needs to be done (finish her children's photo albums!) while she still can.
Here's what I appreciated most: that she was frank about the time spent in denial. From my own experience with my mom facing her death, I know how tempting it can be to stay at that stage, how much energy is drained by facing the inevitable---planning one's funeral, leaving the notes or recording a message---they all sound doable but are 100x harder to do when the context changes.
I love her frankness about her own weaknesses, whether about vanity---high heels and tatoo'd eyebrows or in her personal relationships, and her strengths---her tenacity as a reporter and her determination to stay in control of her attitude while everything else in her life moves beyond her control.
As an Irish-Catholic from the Midwest, I had little in common with Susan, who was adopted into a Greek Baptist family in Florida. And yet, I loved learning about her different experiences as she set off to fulfill her bucket list and learn more about her origins.
The most moving parts of the book are also the ones I imagine were most difficult for her to write, the ones describing her children.
I love that, true to life, so many of her planned "memories" didn't turn out the way she had hoped/planned, but by the end she has learned to expect that, to not have expectations, and she treats us the reader to her intense awareness of what she does have access to---being alive, and her senses---such beautiful and sensual descriptions of Greek dishes, and the ocean and the sky. I can still picture her, poolside under the tiki hut with her Goldie nearby.
I only cried twice---when she got the book deal, because if I were sick, that relief would be the greatest gift to me, and again, at the very end, as she typed her children's names. I can't fathom all that she has surrendered, but, read this book or not, you and I will one day have to give up all of it too, and it was a generous gift for Susan to share with all of us her journey of letting go.
I heard of Susan via one of my favorite features in The Week Magazine---a spotlight on a specific author and their favorite books. I liked her choices, and her own memoir was described as being about "making the most of her remaining time" after her diagnosis of ALS at age 44.
She was an investigative reporter, and when she describes some of the horror she witnessed and reported on during her 20 years on that beat in Florida, the unsentimental tone she writes with makes much more sense. She is a 'get-it-done' woman,a no-nonsense realist who decides to do what needs to be done (finish her children's photo albums!) while she still can.
Here's what I appreciated most: that she was frank about the time spent in denial. From my own experience with my mom facing her death, I know how tempting it can be to stay at that stage, how much energy is drained by facing the inevitable---planning one's funeral, leaving the notes or recording a message---they all sound doable but are 100x harder to do when the context changes.
I love her frankness about her own weaknesses, whether about vanity---high heels and tatoo'd eyebrows or in her personal relationships, and her strengths---her tenacity as a reporter and her determination to stay in control of her attitude while everything else in her life moves beyond her control.
As an Irish-Catholic from the Midwest, I had little in common with Susan, who was adopted into a Greek Baptist family in Florida. And yet, I loved learning about her different experiences as she set off to fulfill her bucket list and learn more about her origins.
The most moving parts of the book are also the ones I imagine were most difficult for her to write, the ones describing her children.
I love that, true to life, so many of her planned "memories" didn't turn out the way she had hoped/planned, but by the end she has learned to expect that, to not have expectations, and she treats us the reader to her intense awareness of what she does have access to---being alive, and her senses---such beautiful and sensual descriptions of Greek dishes, and the ocean and the sky. I can still picture her, poolside under the tiki hut with her Goldie nearby.
I only cried twice---when she got the book deal, because if I were sick, that relief would be the greatest gift to me, and again, at the very end, as she typed her children's names. I can't fathom all that she has surrendered, but, read this book or not, you and I will one day have to give up all of it too, and it was a generous gift for Susan to share with all of us her journey of letting go.
August 29, 2013
First of all, it's not a tear-jerker, people! Yes, it's sad that Susan and her family have to go through this; it's sure as hell not fun. But, you can't feel sorry for someone who refuses to feel sorry for herself -- just does not work. I'm not into re-hashing plots, but like to give readers an idea of what to expect, so here goes ...
We start at the time her symptoms appeared, up to the formal diagnosis. Then, the story of Susan's life is told in a rather non-linear manner going forward with her various trips to sites that have meaning in her life (Budapest, etc.), as well as "bucket list" trip to the Yukon to see the northern lights; however, within those episodes are flashbacks to earlier events, so that there is some merit to some reviewer's claims that they were thrown by such things as a scene where she's fairly disabled morphing (for lack of a better term) into a time when she was still working as a journalist. There's also the theme of being adopted and connecting with birth parents that runs along with the ALS issues.
I can't think of a lot more to say without going into "spoiler" territory, better you should read the book itself (prepared for the timeline thing). Frankly, her story would be interesting enough, even without the health issues. Karen White's narration was so well done that I had to consciously recall it wasn't Susan reading it herself (beaming her thoughts into voice files, if you will).
Highly recommended
We start at the time her symptoms appeared, up to the formal diagnosis. Then, the story of Susan's life is told in a rather non-linear manner going forward with her various trips to sites that have meaning in her life (Budapest, etc.), as well as "bucket list" trip to the Yukon to see the northern lights; however, within those episodes are flashbacks to earlier events, so that there is some merit to some reviewer's claims that they were thrown by such things as a scene where she's fairly disabled morphing (for lack of a better term) into a time when she was still working as a journalist. There's also the theme of being adopted and connecting with birth parents that runs along with the ALS issues.
I can't think of a lot more to say without going into "spoiler" territory, better you should read the book itself (prepared for the timeline thing). Frankly, her story would be interesting enough, even without the health issues. Karen White's narration was so well done that I had to consciously recall it wasn't Susan reading it herself (beaming her thoughts into voice files, if you will).
Highly recommended
March 28, 2013
Fabulous. Amazing. Beautiful. One of the most spiritual books I have ever read. Susan is my type of girl. She suggested they drop a few "F" bombs while discussing her book deal, so they knew she wasn't worthy of Disney. She loves to drink. She loves her family. She is a journalist. A CRIME journalist. What I do not know for sure is if I would have the grace and dignity she has had within her last years of life. She did amazing things, inspired many, and continues to inspire the world with the beautifully written book. A true gem. One I will take with me for the rest of my life, and realize what a gift it is to live each day to its fullest.
November 2, 2017
Doesn't live up to it's high goodreads rating.
Susan is given one year to live and she decides to go on a trip with each of the people who are important to her. Great premise but then the travels and stories and the relationships she has with these loved ones is just boring. Susan is a journalist so her writing should be better than it is. It was more like, "we did this, then we did that" her optimism is encouraging but not believable. Her husband and sister were the most impressive people in the story. It's hard to read someone's end of life story and know they put everything into writing it, but it just doesn't hold up.
Susan is given one year to live and she decides to go on a trip with each of the people who are important to her. Great premise but then the travels and stories and the relationships she has with these loved ones is just boring. Susan is a journalist so her writing should be better than it is. It was more like, "we did this, then we did that" her optimism is encouraging but not believable. Her husband and sister were the most impressive people in the story. It's hard to read someone's end of life story and know they put everything into writing it, but it just doesn't hold up.
February 6, 2017
Um livro triste, mas com uma mensagem muito bonita!
May 19, 2020
Nachdem Susan Spencer-Wendel die Diagnose ALS bekommt und von dem normalen Leben, wie sie es kannte, ausgeschlossen wird, beginnt sie ein Buch zu schreiben. Sie schreibt über und für die Menschen, die sie liebt. Ihre beste Freundin, ihre Schwester und Eltern, ihren Mann und ihre drei Kinder. Allen möchte sie schöne letzte Erinnerungen hinterlassen, an die sie gerne zurückdenken sollen. Und so verbringt sie ihre letzten Jahre.
Das Buch ist nach den Personen und Ereignissen angeordnet und springt dabei viel in der Zeit, sodass man oft nicht weiß in welchem Stadium der Krankheit sie sich zu dem Zeitpunkt gerade befindet. Generell geht Susan auch nicht viel auf die Krankheit ein, sie erwähnt natürlich, was sie alles nicht mehr selbstständig tun kann und wie viel Hilfe sie von anderen braucht, aber sie redet kaum über die Schmerzen oder den konkreten Verlauf. Dies ist also kein Buch über eine ALS-Erkrankung, dies ist eine Erinnerungsreise einer sterbenden Frau.
Das Buch ist nach den Personen und Ereignissen angeordnet und springt dabei viel in der Zeit, sodass man oft nicht weiß in welchem Stadium der Krankheit sie sich zu dem Zeitpunkt gerade befindet. Generell geht Susan auch nicht viel auf die Krankheit ein, sie erwähnt natürlich, was sie alles nicht mehr selbstständig tun kann und wie viel Hilfe sie von anderen braucht, aber sie redet kaum über die Schmerzen oder den konkreten Verlauf. Dies ist also kein Buch über eine ALS-Erkrankung, dies ist eine Erinnerungsreise einer sterbenden Frau.
August 14, 2019
I love a lot of different book genres - nonfiction, literary fiction, and memoir are my top three, but I'm also into mysteries and romance. I eat up women's fiction, especially if the gal's got a full-time job. But if I could only read one type of book for the rest of my life, I think I'd define my absolute favorite as: Books that make me a better human.
Which brings us to this beautiful, heartbreaking book that made tears simply stream down my face. Susan, the author, was diagnosed with ALS (Lou Gehrig's disease) at 44. In addition to deciding to live her last healthy year with joy, she wrote this book. With her thumb, on a smartphone.
I think this book was even easier for me to love because she largely stays away from dispensing advice. She just tells of her year, and her relationships, and what brings her joy. What a treasure Susan must have been to those around her - as well as those who benefited from her journalistic efforts.
I loved this book for being part travel memoir, part a life well lived, and part reminder how freaking short life is - and how we don't know what's to come. All the more reason to love it all today.
Which brings us to this beautiful, heartbreaking book that made tears simply stream down my face. Susan, the author, was diagnosed with ALS (Lou Gehrig's disease) at 44. In addition to deciding to live her last healthy year with joy, she wrote this book. With her thumb, on a smartphone.
I think this book was even easier for me to love because she largely stays away from dispensing advice. She just tells of her year, and her relationships, and what brings her joy. What a treasure Susan must have been to those around her - as well as those who benefited from her journalistic efforts.
I loved this book for being part travel memoir, part a life well lived, and part reminder how freaking short life is - and how we don't know what's to come. All the more reason to love it all today.
April 15, 2013
You know, I pick books up off of the shelf @ the biblio for lots of different reasons and that can be fun - I really never know what will catch my fancy and I like it. This book I actually picked based on the cover (even though I know you should never judge a book by it's cover, Mom) and it was the little cut out of the dog that caught my eye.
There IS a dog in this story but the dog chapter, like almost every other chapter in this book, is interesting not for the story about the dog but because of the way the author approaches getting her dog. The dog comes to them as a part of the list of things she wants to do in her last year of relative 'wellness'. I know, from experiencing it with my Dad, that ALS can take quick sharp turns when you least expect them and Susan Spencer-Wendel is aware of this and attacks all of the things she wants to do in this year with that in mind. She chooses to get her children a dog because they want one so much and will-take-care-of-it-and-walk-it-and-feed-it-and-clean-up-after-it but she knows that they don't have the time or the energy to cope with a beautiful new puppy so she finds a wonderful lab through a program at a local prison. Not the path that you could guess anyone would take but by the end of this book you won't find yourself surprised by anything this woman does. You also won't find yourself questioning or judging her (no matter how grumpy you are that day) and find yourself wishing she would be your friend. I know I really did - I have fantastic friends, award-winning friends - but I thought I'd add this author to any evening or dinner out I go on.
It's beautiful and sad but it is worth the read. I'd rate it a 5-star book for the quality of the writing (not a surprise from a 20-year newspaper columnist) and give it a higher number of stars for pure inspiration. I'm going to suggest this to any adult and really think it would make a great book club choice because there would be so much to talk about - parenting, being a good friend, sister, daughter or partner and even planning for how you want to die, how you want to be celebrated, what you value as a person. She is funny and kind and it is a book I'll remember for a long time.
There IS a dog in this story but the dog chapter, like almost every other chapter in this book, is interesting not for the story about the dog but because of the way the author approaches getting her dog. The dog comes to them as a part of the list of things she wants to do in her last year of relative 'wellness'. I know, from experiencing it with my Dad, that ALS can take quick sharp turns when you least expect them and Susan Spencer-Wendel is aware of this and attacks all of the things she wants to do in this year with that in mind. She chooses to get her children a dog because they want one so much and will-take-care-of-it-and-walk-it-and-feed-it-and-clean-up-after-it but she knows that they don't have the time or the energy to cope with a beautiful new puppy so she finds a wonderful lab through a program at a local prison. Not the path that you could guess anyone would take but by the end of this book you won't find yourself surprised by anything this woman does. You also won't find yourself questioning or judging her (no matter how grumpy you are that day) and find yourself wishing she would be your friend. I know I really did - I have fantastic friends, award-winning friends - but I thought I'd add this author to any evening or dinner out I go on.
It's beautiful and sad but it is worth the read. I'd rate it a 5-star book for the quality of the writing (not a surprise from a 20-year newspaper columnist) and give it a higher number of stars for pure inspiration. I'm going to suggest this to any adult and really think it would make a great book club choice because there would be so much to talk about - parenting, being a good friend, sister, daughter or partner and even planning for how you want to die, how you want to be celebrated, what you value as a person. She is funny and kind and it is a book I'll remember for a long time.
March 20, 2013
Susan was an accomplished journalist, active, athletic in the prime of life...her early forties. She couldn't figure out the sudden withered looking hand, but decided it was just one of those weird things that her doctor would figure out and fix.
Many months later and after more denial she was diagnosed with ALS, Lou Gehrig's disease. Untreatable, no cure, only a rather quick (3-5 yrs from the diagnosis) and painful exit. Your mind fully functional as your muscles and body leave you ... unable to walk, speak, eat, and eventually breathe. Heartbreaking because you know it's coming, the end is near, and yet so much to do. So much to put down on paper for her children and other loved ones. Thus, the book. And at this point she was only able to use her thumb and painfully write a book on her iphone with just one finger. Daunting. Yet, with a silent partner she did it.
Susan, married with great husband, John and three children. All cherished, loved, but her youngest, Wesley, with Asperger syndrome and she worries about him. She wants/needs a way to find a thread for him that will help him physically connect with others. Enter Gracie, the dog. ha...isn't it always the way. That was great, many a tear with those descriptions of how Wesley and the dog bonded.
The journey is well written and quite frank. Good especially for those dealing with loved ones who are facing a known ending. Probably also good for anyone else as a contemplative process but beware there is a lot of heavy sadness,without the saccharine.
The Today Show has had the video of Susan Spencer (dated March 15th, 2013) on their website which I am sure you can still see. That is the most powerful of all.
Recommended.
Many months later and after more denial she was diagnosed with ALS, Lou Gehrig's disease. Untreatable, no cure, only a rather quick (3-5 yrs from the diagnosis) and painful exit. Your mind fully functional as your muscles and body leave you ... unable to walk, speak, eat, and eventually breathe. Heartbreaking because you know it's coming, the end is near, and yet so much to do. So much to put down on paper for her children and other loved ones. Thus, the book. And at this point she was only able to use her thumb and painfully write a book on her iphone with just one finger. Daunting. Yet, with a silent partner she did it.
Susan, married with great husband, John and three children. All cherished, loved, but her youngest, Wesley, with Asperger syndrome and she worries about him. She wants/needs a way to find a thread for him that will help him physically connect with others. Enter Gracie, the dog. ha...isn't it always the way. That was great, many a tear with those descriptions of how Wesley and the dog bonded.
The journey is well written and quite frank. Good especially for those dealing with loved ones who are facing a known ending. Probably also good for anyone else as a contemplative process but beware there is a lot of heavy sadness,without the saccharine.
The Today Show has had the video of Susan Spencer (dated March 15th, 2013) on their website which I am sure you can still see. That is the most powerful of all.
Recommended.
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