That’s what Susan Spencer-Wendel decided to write about when, at 44, the mother of three and a longtime court reporter for the Palm Beach Post, was diagnosed with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease).
Realizing that the degenerative nerve disease would leave her steadily weakened and with less than five years left to live, Wendel, after a period of denial, decided to come to terms with her fate by living the best year possible. She would do everything she wanted to do. And she would write about it.
The product of that year is “Until I Say Good-bye: My Year of Living with Joy” (with Bret Witter, HarperCollins, New York, 2013, 362 pages), a painfully, magically honest chronicle of Wendel’s experiences.
“If you were dying, what would you do? What would you see? Who would you spend your last year with?” she asks early in the book.
This is not an unflinching memoir. When initially diagnosed, Wendel is shaken to her core at the thought of all she would lose.
She cries a lot throughout “Good-bye,” sometimes at the most unexpected moments. But she keeps writing, keeps living, because she wants to remember all of it.
One of the book’s most heartbreaking moments is when Wendel realizes she has to leave the newspaper job she loves, simply because she could no longer do it. “That time, I did cry. Because I loved that job, and I just admitted to myself that it was gone.”
Some of what she does is simple. She adopts a dog named Gracie. Against the advice of medical professionals, she travels to the Yukon, Hungary, Hawaii, New York and Cyprus.
Here readers will find moments of happiness, such as when she shares drinks with good friends in Budapest. “I’m so glad to be here, I thought. I am so glad to be alive.”
In a fascinating turn, Wendel, who is adopted, reconnects with her birth mother Ellen and finds out all she can about Panos, the Greek Cypriot father who never knew about her. In the process, she reflects on her complicated relationship with her adoptive parents.
She talks about her devoted and sometimes overwhelmed husband John. We meet Wendel’s sister Stephanie and her stalwart friend Nancy. In many ways, “Good-bye” is their tale as well.
“Good-bye” is also reflexive in that Wendel remembers in the book how the book came to be, including the big publishing deal she got and how she had to give up using a regular computer keyboard and her iPad because her fingers were too weak. Luckily she still had her iPhone.
“Its tiny touchscreen keyboard was perfect, because I still had one helluva right thumb,” she recalls. “I wrote nearly this entire book that way.”
“Good-bye” has been compared favorably to the late Randy Pausch’s 2008 book, “The Last Lecture,” and Mitch Albom’s 1997 book, “Tuesdays with Morrie,” both of which contain life lessons and dealing with death.
The titular Morrie—Albom’s sociology professor Morrie Schwartz—died of ALS, the same disease Wendel has. This book is memorable in the same way.
What makes “Good-bye” so accessible is that Wendel does not try to impress the reader with gaudy prose. Ever earnest and never wallowing in self-pity, she writes simply about her “magical year,” be it about living it up or getting ready to die in the most dignified way.
Now 46, Wendel is a best-selling author and inspiration. It’s fortunate that she can see how her book and life have had such a positive effect on others. It’s the best way to be remembered, and “Until I Say Good-bye” is the best proof of that.
“But writing this book was not work. Like each journey I took during the year, it brought me joy. It kept me alive. Like every good thing in my life, I didn’t want it to end.”
Available in hardcover at National Book Store.