Until I Say Good-bye: My Year of Living with Joy (with Susan Spencer-Wendel)

Until I Say Good-bye: My Year of Living with Joy
(with Susan Spencer-Wendel)
New York Times Bestseller, #3 (2013)

Susan Spencer-Wendel was an award-winning crime reporter and mother of three children under the age of fourteen when she noticed withering in her right hand. Soon, the weakness moved up her arm, then into her legs. After a year of doctor’s visits and denial, she acknowledged the worse…she had ALS, a fatal, non-treatable disease that destroys the muscles while leaving the mind intact. She was forty-three years old, and she had only one year of health left.

Susan decided to plan a special trip with each of the seven most important people in her life: her husband, children, life-long best friend, sister and biological mother (she was adopted). She wrote articles about her first two trips, to see the Northern Lights with her best friend and to Budapest with her husband for their twenty-fifth anniversary, for her former employer, The Palm Beach Post. They were beautiful.

Within weeks, she had a book deal, and I was on my way to south Florida to help her. I didn’t realize until I arrived how sick she was. Susan couldn’t walk. She couldn’t talk for more than a few minutes without tiring. Her hands were curled and her legs “like lollipops,” as she described them. She was down to less than ninety pounds. But she was determined to write the book—all 80,000 words—before ALS made that impossible.

I thought: it’s already impossible. She just doesn’t realize it yet.

If I had known Susan then like I know her now, I would have realized there’s only one thing that’s impossible: stopping her. We spent that weekend creating a seventy chapter outline about her “year of living with joy.” I flew home, and the next day Susan sent me a chapter. The next day, she sent another. They weren’t in order; they whatever chapter interested her most that day, but they came without fail.

Susan wrote 80,000 words in seventy days, even though she was traveling on her final trips (to Kleinfeld’s in New York City to see her fourteen year old daughter in a wedding dress; to the dilapidated monastery in eastern Cyprus her deceased father loved as a child). She completed the book even though she had to painstakingly type one letter at a time.

In the “notes” function of her iPhone.

Using only her right thumb, because the rest of her fingers had decided to curl up and die.

The book Susan produced is a wonder: kind, giving, funny, honest about the heartbreak of dying young, but alive with the simple pleasures of life. I mean it: Susan totally kicks butt, in this book and in life. I was never sad when I was with her. I was laughing and happy, like everyone who visited her. Susan had that effect on people. I was only sad afterward, when I thought how soon we would lose her.

Even now, I often say to myself, “If Susan can do that, then why am I complaining?” But what I really mean is, “Thank God I got to spend time with Susan Spencer-Wendel.” I hope you decide to spend time with her, too. You will not forget her or her wonderful family.

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Profound, tender, and often funny…Will remind readers of what really matters most: love.

Gretchen Rubin, author of The Happiness Project

An endearing and all-too-human story

The New York Times

Her honesty and frustration is underscored with a wicked sense of humor.” 

ABC News
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