Most adults have heard of amyotrophic lateral sclerosis, often referred to as Lou Gehrig’s disease. Approximately 5,600 people in the U.S. are diagnosed with ALS each year, according to the ALS Association. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
    With no racial, ethnic or socioeconomic boundaries, ALS can strike anyone. So, it’s not unlikely that many of us know or have known someone debilitated by this progressive neurodegenerative disease. Sadly, the end result is death — usually at a premature age, and usually within two to five years.
    If you were diagnosed with this disease, how would you choose to live the remainder of your life? That is the theme of the new book Until I Say Goodbye, My Year of Living with Joy, by local journalist and writer Susan Spencer-Wendel. It is a heartfelt look at accepting the inevitable through the unwavering (and often humorous) gaze of a consummate journalist.
    The book is beautifully written — with her last functioning digit, her thumb. Buy it. This is not a sad and depressing book. It is the archetypal hero’s journey intertwined with a passionate love song for her children. This is what explains its rise to No. 3 (at press time) on the New York Times bestseller list and has sold Hollywood on its film potential. It is a testament to Susan’s talent and her capacity for love.
    I worked with Susan for many years at The Palm Beach Post, but it wasn’t until last year when I joined a fledgling writing group that I began to really appreciate her sharp wit and intellect and to see firsthand the depth of her love for her three beautiful children.
    I don’t know that I will ever finish my novel, but her advice and suggestions will follow my writing wherever it does go. I am grateful to have been a part of this small group nestled beneath her chickee hut, reading and laughing — and sometimes crying — all of us struggling to put our passions and experiences into words.
    On March 23, Susan — with family, friends and colleagues — participated in the Walk to Defeat ALS in Jupiter. More than 700 people came out on a bright, warm morning. ALS had touched each team of walkers, so they came in support and memory of dancers and insurance agents, carpenters and business owners, financial planners and surgeons. But even with this support, the ALS Association Florida Chapter fell short of its $200,000 goal.
    That seems like such an insignificant amount, somehow. It is with this knowledge that I ask you to consider making a contribution toward finding a cure for ALS. If not for our generation, then for the next — and for their much-loved children.
    Send checks to: Walk to Defeat ALS, 3242 Parkside Center Circle, Tampa, FL 33019.
    Questions? Call 888-257-1717 or email Tiffany Geiger at tgeiger@alsafl.org.
—Mary Kate Leming, Executive Editor

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