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 … 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.”
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Susan’s openness about her last days dealing with ALS was such an education on ALS. Susan’s sense of humor remained as she lost the ability to do just about anything. I loved this book. Thank you Susan and her family for sharing their journey with this illness with the rest of us.
I feel very bad for the author to be stricken with such a debilitating disease. It seems like she tried to pack a lifetime of special moments in a short time. I was surprised they all didn’t include her family.
I would recommend this book to everyone. What incredible courage to make the choice to live in joy the time you have left after receiving a terminal diagnosis.
It was like you were part of the story. Very inspirational and sad. Let’s you see ALS in a way that many don’t experience.
This book is surprisingly upbeat for such a serious subject. The author was determined to find joy at the end of her life and to leave her loved ones with a lasting memory of her. Although it was sad, it was it was very upbeat. Much credit goes to her very loving family.
This lady was a wonderful inspiration. We should all live like we had one year to live. Her children will have great memories.
This book was inspiring to me because I suffer from a lot of health issues and wonder what the future holds. This author, suffering from ALS, let nothing stop her from enjoying what was left of her life. Her writing was amazing as well.
I knew a woman who died from ALS. I feel this was a real, honest representation of a sufferer of ALS. It was brutally honest about some of the indignities of ALS and broke my heart, because I know there is no other way out besides death, but she found joy every place that she could.
You would think that reading about a 44 year old with a diagnosis of ALS would be depressing. But you would be wrong. Susan Spencer-Wendel doesn’t let her ALS define her. It may slow her down and cause her to modify her daily activities, but this amazing story is worth reading for what she chooses to do, not what her limitations don’t allow her to do. Susan chooses to live the time she has left with JOY. With the help of a fantastic husband and some pretty incredible friends she fulfills her bucket list items. Her work ethic and creativity gave me pause. You think you have setbacks? frustrations? Read Susan’s story and see how she makes the most of every day.
I was not impressed with this writer’s handling of the subject matter. Instead I found the her approach shallow. There was nothing spiritual in the book only a detailing of her efforts to make an impression on the world she was to leave behind. Her fight was courageous, but no more so than what others with far few financial resources have done. If you’re looking for a sob story this may be the book for you, but if you want real answers to the questions of dealing with approaching death, you should look elsewhere.
As someone who has lost several family members to ALS, I found this book to be very real, familiar, and emotional.
An exceptional read from a courageous author.
Too sad and almost isn’t believable. Not saying she lied but maybe used a little journalist flair to keep the reader interested. I cried and cried.
This is a wonderfully written biography about a young Mother who learns she has ALS – Lou Gehrig’s disease and how she spends her last year celebrating the life she has left. It avoids tear jerking sentimentality and makes you appreciate all you have in life! I couldn’t put it down.
Uplifting to read how a young mother faced a tragic outcome with courage and even joy for the sake of her children.
I have a dear friend who has ALS. It was so informative to me how she was able to move on and do all she could, while she could. I looked up online and saw that she has since died. It does not take her to that point in the book. It really was excellent!
riveting and inspirational true story from an accomplished and admirble contemporary .journalist
Hard issue to face, but necessary.
A wonderful albeit at times sad book about a woman’s journey through the last best year of her life after an ALS diagnosis. I won’t tell more except to say, it’s uplifting and inspiring.
Great book! Very well written and amazing to think about what a positive take the author took on such a tough diagnosis. Made me laugh and cry at times.