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Until I Say Goodbye: A Book about Living

4.04  ·  Rating details ·  7,350 ratings  ·  889 reviews
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
Hardcover, 384 pages
Published March 1st 2013 by Two Roads (first published 2012)
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Average rating 4.04  · 
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 ·  7,350 ratings  ·  889 reviews

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Susan Spencer-wendel
I am the author. Hope you all laugh more than you cry. -- Susan
Aug 26, 2013 rated it it was ok
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
Mar 19, 2013 rated it it was amazing  ·  review of another edition
When the author was diagnosed with ALS she decided she wouldnt spend her remaining time going to endless doctors 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.

Susans 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
"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
Alisa Bowman
Mar 24, 2013 rated it liked it
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 ...more
Jul 19, 2013 rated it liked it  ·  review of another edition
Shelves: non-fiction
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 Aspergers son to swim with dolphins, has her 14-year-old daughter try on wedding dresses at Kleinfelds (on the premise that she will not live to see the real thing), finds her roots in Cyprus, tries to see the ...more
Sonia Gill
Apr 19, 2013 rated it liked it
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 ...more
Mar 15, 2013 rated it it was amazing  ·  review of another edition
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.
Let 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 ...more
Sachin Ganpat
Sep 14, 2014 rated it did not like it
Recommends it for: Nobody
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
Apr 28, 2013 rated it it was amazing
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
Nov 09, 2013 rated it really liked it
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
Doris Evans-McCarthy
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 ...more
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
Karen White
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
Susan Lilly
Apr 01, 2013 rated it it was amazing  ·  review of another edition
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 ...more
Deirdre Keating
Apr 02, 2013 rated it it was amazing
Shelves: memoir
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
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
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
Mar 28, 2013 rated it it was amazing
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 ...more
Shirley Revill
Truly inspirational and thought inspiring. Highly recommended.
Christine (Queen of Books)
Aug 14, 2019 rated it it was amazing
Shelves: own, memoir, disability
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
Penny McGill
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
Nancy Rossman
Mar 14, 2013 rated it really liked it
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
Bev Walkling
ALS has to be one of the most terrifying diseases out there. There is only one way that it will end - in death and typically one of suffocation as you lose the ability to breathe. Susan Spencer-Wendel suspected for two years before her official diagnosis that she was living with ALS. She wrote this book primarily so that her children would get to know her better and remember her after she would be gone, and some reviewers feel that while it works well in that regard, it does not work as well for ...more
Mar 16, 2013 rated it it was amazing  ·  review of another edition
A beautiful story, actually a collection of beautiful stories. Exceptionally well-written (especially when you understand HOW a majority of it was written), a story that you begin (from write-ups and reviews) thinking will be a lesson in how to die gracefully...but a story than instead provides an incredible, unforgettable lesson in how to live. Two favorite words emerge, "serendipity" (an accurate description of my experience with this book) and "fearless"...a word the author grows into as she ...more
Mar 19, 2014 rated it liked it
This is the account of the authors year of rapid decline due to ALS. Her hand, no longer capable of feeding herself, combing her own hair or scratching an itch, was crumpled into a claw the perfect shape for cradling a smart phone. Her speech too slurred to use voice recognition software, but with a thumb her only mobile digit, she used the smart phone to write this memoir. The book is personal while avoiding sentimentality, positive without denying the difficult elements of her deteriorating ...more
Nov 02, 2017 rated it it was ok  ·  review of another edition
Shelves: audio
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
Nov 11, 2013 rated it liked it
It feels wrong to give this book the same number of stars as Insurgent -- Insurgent was more like 2.5, and Until I Say Goodbye was more like 3.5 for me.

I liked it, and I greatly admire the author's strength and wisdom. And I feel tremendous compassion for her situation. But ultimately it felt more like a book she wrote for her loved ones than for a wider audience, and it also felt a tad self-congratulatory to me. Which is perfectly understandable under the circumstances, but doesn't make this a
Mar 29, 2013 rated it really liked it
Biography. True story. Susan is such a strong woman. Very sad though. She is 44, and dying of Lou Gehrig's disease.
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Play Book Tag: Until I Say Goodbye: My Year of Living With Joy / Susan Spencer-Wendel. 3.5 stars 2 9 Feb 21, 2017 03:30AM  
HOW MY WIFE GOT CURED OF ALS 1 6 Feb 03, 2017 04:09PM  
Audiobooks: Giveaway 4 61 Apr 05, 2013 03:07PM  
Audio-Bibliophiles: Giveaway 1 12 Mar 30, 2013 07:56PM  

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“I wanted to drop the emotional hammer on Steph and tell her my thought: that I would very much like for her to try to find her birth mother before I die, so that I might meet her and say, "Your brought to life an exceptional human being who God divined my sister. And it was indeed divine. Thank you.” 5 likes
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