Sunday, July 21, 2024

On Her Own Terms

A growing number of people in South Florida already know Susan Spencer-Wendel’s story, but that number is about to explode when her book, Until I Say Good-Bye, is published this spring in 23 languages, followed by a movie in the works. Both are based on her decision to live purposefully—and with joy—following a 2011 diagnosis of amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease. I visited Susan and her husband, John, at her Lake Clarke Shores home in their backyard under the shade of a handsome chickee hut to see how she was progressing as her book was about to hit newsstands—and all the talk shows.

The question on my mind, like most people who will read her book, was this: How has she has been able to face the horror of ALS with no fear, and with a conscious choice to embrace every moment?

“It’s always been in my nature,” she says, speaking with difficulty. “That’s just the way I have always been. I have always made the right decisions.” She smiles, eyes twinkling. “This was the right decision.”

“She’s always done what she wants to do,” says John, by way of translation. “I don’t think it has changed her—it has revealed more of who she really is.”

She was super woman, after all. Spencer-Wendel was an award-winning (and great looking) courts reporter with a regular byline in the Palm Beach Post. She had three children (now ages 9, 11 and 15), a handsome husband, and the respect of her colleagues at the paper and throughout criminal justice circles. It was that woman who refused to believe anything was really wrong three years ago, when she noticed something freaky with her hand as she was getting ready for bed one night. She held it up to her husband, a hand that had gone sort of scrawny and pale, tendons and bones showing through.

That was in 2009.

“You have to see a doctor,” John said.

Next came the gradual weakening, a twitching of the tongue. Her husband, who had his own dark suspicions that it was ALS, had begun to cut up her food for her at dinnertime. There were visits to doctors, tests for obscure diseases and for a period, denial. Then thoughts of suicide as she began to piece together her symptoms. Finally, there was the official diagnosis that would bring her world crashing down: ALS.

Susan Spencer-Wendel was only 44.

Two years later, Spencer-Wendel reclines in an outdoor chair, tiny and light as a feather. Her body has wasted to stick-thin, but the blue eyes still sparkle, and the smile is dazzling. Despite the ravages of the disease, she is still very much the same woman who had an epiphany two years ago in a Burger King parking lot 20 minutes after getting the bad news.

“I had watched Lou Gehrig’s farewell speech of 1939 a number of times,” she writes early in the book. “The one where he declared himself the luckiest man on the face of the Earth, even after ‘catching a bad break.’ Even after being diagnosed with a disease that would rob him of his talent, and then his life … And then it came to me too, alone, seated on a parking barrier outside Burger King. No, not a muzzy moment, but my life in focus, tack sharp.

“Forty-four years of perfect health. I had rarely had a head cold or tooth cavity. Forty-four years, and the sickest I had ever been was after I ate a bad chicken sandwich in South America. I had three easy pregnancies, each producing a rosy pudgy babe…I had known abiding love; traveled the world; married a great partner; worked at a job I adore…I was alive. I had a year. Maybe more, but I knew I had one more year at least of good health. I determined, right there in the Burger King parking lot, to spend it wisely …to plant a garden of memories for my family to bloom in their futures…”

To continue reading, pick up a copy of our March/April issue.

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