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Until I Say Good-Bye: My Year of Living with Joy

Until I Say Good-Bye: My Year of Living with Joy

4.5 92
by Susan Spencer-Wendel

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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


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."

Editorial Reviews

Publishers Weekly
Journalist Spencer-Wendel discovered she was ill when her left hand suddenly became withered. As she struggles to come to terms with knowing something is wrong—not wanting to find out, then not fully believing the doctor's ALS diagnosis—she writes with courage and strength. When she gets the news, the 40-something author is in her prime, blessed with a great reporter job at the Palm Beach Post and loving family. Using benefits from an insurance policy, she quits her job and decides to take trips with her family and friends, so that she can have all of the amazing experiences she's put off and create lasting memories. She goes to the final space shuttle launch with her youngest son, having never been to Cape Canaveral, even though her home is only hours away. A few months later, joined by her best friend, she sees the aurora borealis in the Yukon. It's there that Spencer-Wendel's philosophy plays out, as it does many times more, as she briefly caught the lights before tripping and missing the rest. She is appreciative and grateful for those few seconds and banishes regrets. There are certainly moments of heartbreak that she doesn't shy away from, such as when she goes shopping for bridal dresses with her teenaged daughter, knowing she'll miss any future wedding. Spencer-Wendel's life will sadly be cut short, but in writing her story, she shows her family and friends how to go on, choosing happiness and love over fear. (Mar.)
New York Times
“Her heart-ripping book chronicles what she did immediately after her diagnosis: she decided to embrace life while death chased her down..…endearing and all too human”
USA Today
“It’s a touching and brutally honest account of one mother’s inspiring attempt to get the most out of the time she has left.”
New York Daily News
“. . . almost unbearably moving chronicle of how Spencer-Wendel went about creating lasting moments in that year for the ones she loved . . .”
U.S. News & World Report
“The tales are painfully honest, and they’re heartbreaking because we know the inevitable outcome. But mostly, they’re inspiring. Spencer-Wendel, even in the darkest of moments, remains insistent on happiness-staggeringly so.”
ABC News
“Her honesty and frustration are underscored with a wicked sense of humor . . .”
Cokie Roberts
“This heartbreaking and heartwarming good-bye will make you laugh as much as it makes you cry. Susan Spencer-Wendel’s determination to find the joy in life after having been dealt the ALS card is both inspirational and enlightening.”
Huffington Post
“All you can do . . . is to turn the pages, slack-jawed, in awe at her insistence on having powerful, individual experiences . . .”
the Oprah Magazine O
“The inspirational account of a woman whose ALS diagnosis and subsequent physical decline don’t prevent her from enjoying life to the fullest, which she proves.”
Gretchen Rubin
“Susan Spencer-Wendel had to face the question, ‘What would you do if you had a year to live?’ This profound, tender, and often funny account of her experiences will remind readers of what really matters most: love.”
“The mother of three children ages 7 to 15 describes her poignant last efforts to travel the world and stay close to her family and community.”
Library Journal
Diagnosed at age 45 with amyotrophic lateral sclerosis (Lou Gehrig's disease), Spencer-Wendel plunged into a live-each-day-fully whirlwind that has already made news (she was spotlighted in the Wall Street Journal, and the film rights to her story have been acquired for $2.5 million). Here she recounts trips to the Yukon to see the Northern Lights, for instance, and to Northern California to meet her birth mother. Most telling, she shops in New York with her 14-year-old daughter for the wedding dress she won't live to see her daughter wear. Foreign rights have been sold to nearly 20 countries, and the first printing is 250,000 copies.
Kirkus Reviews
With the assistance of Witter (Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him, 2011, etc.), crime reporter Spencer-Wendel chronicles her life and the decisions she has made since being diagnosed with ALS (Lou Gehrig's disease). Amyotrophic lateral sclerosis is a wasting disease that progressively causes loss of control of voluntary muscle movement. In her mid-40s and a happily married mother of three with a thriving career, the author rejected the option of assisted suicide in favor of making her last years memorable despite the inevitability of increasing disability. Although not believing that her death would ruin the lives of her husband and children, she understood that it might "affect their ability to live with delight. To live with joy." Spencer-Wendel was determined to overcome her dread of losing mobility and to live her life to the fullest even as the disease progressed. As inspiration, the author found solace in Lou Gehrig's 1939 farewell speech, in which he described himself as "the luckiest man on the face of the Earth, even after 'catching a bad break.' " The author decided to spend her remaining time to travel to places she longed to see, taking friends and family with her. In this way, she left them a legacy of joyfully shared memories. One of the more difficult decisions she made was not to hoard her remaining good health. She determined that she would not search out experimental programs, nor even spare herself physical strain, even though traveling took a further toll on her mobility. Each of the trips more than met the author's expectations: a visit with her son to swim with dolphins, shopping in New York with her daughter and a journey with her husband to Romania, where they lived for the first two years of their marriage. A poignant, wise love story.
O: the Oprah Magazine
“The inspirational account of a woman whose ALS diagnosis and subsequent physical decline don’t prevent her from enjoying life to the fullest, which she proves.”

Product Details

HarperCollins Publishers
Publication date:
Product dimensions:
5.70(w) x 8.30(h) x 1.50(d)


Meet the Author

Susan Spencer-Wendel was an award-winning journalist at the Palm Beach Post for almost twenty years. A graduate of the University of North Carolina at Chapel Hill, she holds a master's degree in journalism from the University of Florida. She has been honored for her work by the Society of Professional Journalists and the Florida Society of News Editors, and she received a lifetime achievement award for her court reporting from the Florida Bar. She lives in West Palm Beach, Florida, with her family.

Bret Witter has collaborated on five New York Times bestsellers. He lives in Decatur, Georgia.

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Until I Say Good-Bye: My Year of Living with Joy 4.5 out of 5 based on 0 ratings. 92 reviews.
katefmVA More than 1 year ago
what an inspiration susan was to me. i am honored to have read her story and we never look at my own disability the same ay again. such a beautiful lady with a remarkable joy and zest for life. may her family be blessed.
Anonymous More than 1 year ago
This book is a love letter to her friends and family a garden of memories .it will show you how one amazing woman did what all us mothers only wished we could do it we  knew we'd be leaving our children sooner than planned .read the book I promise it will enrich your life .you will laugh you will cry but most of all you WILL NOT put it down til you are done  !! 
NMKinnally More than 1 year ago
Diagnosed with Lou Gehrig's disease in June 2011, Susan Spencer-Wendel had every excuse in the world to fold, but instead she reached for her ace in the hole and had the courage to play it. A veteran journalist from the Palm Beach Post, Spencer-Wendel believed in her own talent as a writer and storyteller, and with it she realized the extraordinary potential in the cards she had been dealt. The result is Until I Say Good-Bye, a memoir that entertains, provokes thought, and makes you thankful for each breath you draw. If you are expecting a tearjerker chick book, your expectations will be blown to smithereens. This is a book for everyone who thinks life is worth contemplating and enjoying, everyone who likes to laugh, and everyone who loves gorgeous writing. Make room on your shelf of favorites.
Anonymous More than 1 year ago
For anyone who has ALS or knows someone who has ALS this is a truly remarkable journey of a well known journalist who has ALS and the way she deals with this horrific disease. My husband has ALS and this book was very inspiring. I give it 5 stars.
Boppyof5 More than 1 year ago
Absolutely one of the BEST books I have ever read in my 60 years! It is sad, certainly, but moreso, uplifting & inspirational! Living with a chroinic disease, nothing like the author's, has made me depressed at times. No pill or therapist is better than this book; it should be required reading for doctors, therapists, all with chronic illness. I have a different outlook on my life and shall read this one again! I bought the hardcover for a friend who is not into e-books & sent it to her; I wish I could give a copy to every person I know so their lives would be viewed differently. Ms. Spencer-Wendel & her family are in my preayers now, for peace & comfort. I loved this book!!!
Anonymous More than 1 year ago
I was very interested in learning more about Susan's story as my Mother in law was recently diagnosed with ALS.  I found myself relating to many of her daily struggles and concerns.  This book is inspiring! Her attitude and outlook on life positive, even though her outcome certain.  This book will make you appreciate your good health- remind you that tomorrow is not promised and hopefully change your attitude on life.  Best wishes to Susan and her family!
Anonymous More than 1 year ago
This is a great book. Susan Spencer-Wendell writes in a way that does not make you feel sad as you read it. Excellent read on ALS.
Anonymous More than 1 year ago
Really enjoyed reading this book and could not put it down as I really got into it. What an inspiring story!
FluffyOH More than 1 year ago
I read about this book in Guidepost Magazine and watched the video. This is one of the bravest woman and her family as she experiences her Bucket list after the diagnosis of ALS (Lou Gehrig's disease) I plan to purchase copies for several friends. It isn't sad, but truly a heroic adventure.
Anonymous More than 1 year ago
One of the best books I have read in a long time. Thank you Susan for sharing your intimate story with the world. How blessed your family is to have this piece of you always. This book will help many in their own life struggles. My own Mother has Parkinson's and this book has helped me understand a little more her thoughts and fears.
Amanda_P More than 1 year ago
A heartbreaking yet heart warming story. A great read! Truly inspirational.
Anonymous More than 1 year ago
Spencer-Wendel, when faced with a difficult and terminal illness, took her life to new heights with great spirit. She shares her story with honesty, humor, and great generosity. I could not put it down and remained so touched by her and her stories ever since.
Anonymous More than 1 year ago
I can't wait to read this book. I watched my grandma who i was extremely close to suffer from this disease. It amazes me the strength the author had to write this story with just her thumb working all written on her iphone. She done more with her thumb than most people do with their whole body. Very inspiring
Anonymous More than 1 year ago
Wonderful story! A non-fictional acount of a womans fight with ALS . Her year of givng to her family and to herself. I did not want to put it down! Anyone who is going through, or, caring for someone with this disease should read this book. Ii
Anonymous More than 1 year ago
After reading this book, various words come to mind...educational, sadness, uplifting, humor, grace, love of family, friendship, insightful, courage, and many more. Having a classmate who is stricken with ALS, this book helped me learn a little bit more about this awful disease and what some of the physical things are that he is going through. This is a "must read."
Anonymous More than 1 year ago
I did not enjoy this book. I felt that Susan was bossy and rude to her friends and family. My whole book club was very excited to read this book and no one in my book club really enjoyed the book. The person that was most excited about reading the book could not even finish the book.
ireneTZ More than 1 year ago
I just read this book and I have to say that I enjoyed reading this book. Susan Spencer-Wendel the author of this book tells her story of a fatal diease and how she's copes with this day after day. She's a mother, wife, daughter, and sister. A 44 year old woman so very young but her days are numbered because of this terrible diease. I reccomend reading this book and it makes you realize you cannot take your life or your family for granted, because you never know what can happen.
Anonymous More than 1 year ago
I couldn't go on reading this...... I'm. Not as strong as I thought. The very idea of taking my 14 year old , Sami,wedding dress shopping because i KNEW I would not be there for her wedding broke my heart. This is the first book I have EVER started that I walked away from unfinished. I. Sure its about strength and the human condition. Probably very good..... maybe even life changing..... but I couldn't finish.
Anonymous More than 1 year ago
Such a lovely story.I would love to leave it at that in honor of Susan.On the other hand I feel like I need to come to her defence and to all (including my brother) that have suffered with this hidious disease.To watch step by step as their abilities are stripped away-it's not a pretty site-very gut wrenching is one of many ways to describe it.I know every is entilted to their opinion(April-26-2013-2stars) and I really don't believe that you read this book nor did your so called "book club and if I'm wrong did you all have tissue to catch the drowl that was dripping out of your mouths?Please don'tEVER call this woman names again, RUDE espescially.YOU are the low life piece of scum,RUDE person I believe I've ever encounterd!!!!! AND THAT MY DEAR IS"MY" OPINION.My condolences to Susan's family and please forgive me if I caused you any embarrasment.
Anonymous More than 1 year ago
So amazingly honest and heart warming. Half way through i Googled more information. Such a tough disease i cant even fathom and yet she keeps going.
Anonymous More than 1 year ago
A very brave women with debilitating ASL prepares herself, her husband, her children, and her friends for this severly incapacitating illnes through until her death. An excellent book.
Anonymous More than 1 year ago
Outstanding story ofiving with a termin diagnosis. Excellent storyteller but i had ai little problem following because the story was not told chronologically. Super story about living with joy You know she was a good and generous friend because so many gave to her. ?
Anonymous More than 1 year ago
I am a nurse who has the privilage of taking care of a patient with ALS. Her name is Joy. So you can see why i picked this book..or it picked me. This book is fullfilling to my heart and soul. From the first page to the last it captured my attention. A must read for anyone who faces challenges. We can all learn to live for the now.
Anonymous More than 1 year ago
We should all learn from Susan and live everyday of life to the fullest extent possible. We never know if it may be our last.
Anonymous More than 1 year ago
I enjoyed the book very much, as it was very positive. Although Ms. Wendell knew that her life was going to end soon, she still retained a sense of wonder about the world around her. She held no grudges about how she could have been "dealt this deck of cards," nor did she expect others to suffer for her. She decided to simply live each day "to the best of her ability" and to take each day as it comes. Very comendable.