We just learned this morning that Susan Spencer-Wendel died. Spencer-Wendel was the brave former Palm Beach Post reporter who battled Lou Gehrig’s disease, while writing a book with her thumb and a cell phone, and selling the movie rights to Hollywood—all while celebrating the sheer joyfulness of life itself. She became our hero, and the hero of so many. To call her an inspiration does not seem to be enough. We wanted to reprint our interview with her here, and to send our condolences to her family and legions of friends. Her legacy will outlive all of us.—Marie Speed
On Her Own Terms
Former Palm Beach Post reporter Susan Spencer-Wendel shares her year of living with joy—while battling Lou Gehrig’s disease.
By Marie Speed
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 xx to xx), 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.”
It was then that Spencer-Wendel committed to making a series of “bucket list” trips with her best friend, her sister, her husband and one for each of her children—while writing a book “not about illness and despair, but a record of my final wonderful year.” After her June diagnosis, Spencer-Wendel grew weaker; she was unable to lift her laptop and struggled with typing. She took a medical leave from the Palm Beach Post in August 2011; two weeks later, she won a statewide award from the Florida Bar for a body of work spanning 20 years.
She took the first trip around that time with her best friend, Nancy, to see the Northern Lights in Canada’s Yukon Territory; a moving account of the trip ran in the Post that Christmas Day. In February 2012, she traveled with John to Budapest, where the couple had lived early in their marriage. That was followed by a cruise with her sister, Stephanie. There were also trips to meet her birth mother (Spencer-Wendel is adopted) and the family of her late birth father in Greece, in part to determine if her ALS had a genetic origin (it did not.)
In May, the chickee hut was built—so Spencer-Wendel could have a cool and pleasant spot of her own to continue writing the book she had started. “By then, typing on my iPad was near impossible,” she writes. “My hands grew too tired for the large keyboard. My fingers and palm dragged over the touch screen. I would aim my curled, quivering figure like a sharpshooter over the letter and hope to hell I hit target.”
Next came the iphone. And one right thumb.
“I have written 100,000 words the same way you would write a text message,” she says. “I wrote near this entire book that way.”
It was also in May that a former colleague from the Post, Charles Passy, wrote a column about Spencer-Wendel’s “bucket list” year in the Wall Street Journal, a column that drew national attention and, even better, a seven-figure book and movie deal. It is what has allowed John Wendel to devote himself fully to his wife’s care—and what has given Spencer-Wendel the peace of mind to know that her children will be taken care of when she is gone. But it was more than that; it also was an outlet for her emotions and discoveries—and a way of sharing this “year of living with joy” with first, her family, and then, the world.
Spencer-Wendel covers all the bases in her book. She gives credit where credit is due—parents who believed in her, a devoted soul mate of a husband, a sister as close as having another heart, a best friend who would do anything for her. The most tender parts are the chapters about her children, the three people in the world to whom she aims her message of love and inspiration in everyday life, as well as the personal photo albums she helped make for each of them.
“I shall linger for the rest of my days over the finished [photo albums], the job done, no longer plowing through,” she writes. “I shall relive my children’s childhoods, as I hope they will one day. I hope they will see in front of them what beautiful people they are. And how much their mother loved them.”
Each of the children also got a special trip with their mother and the family, one they were able to choose. The youngest, Wesley, swam with dolphins; “old soul” middle son Aubrey went to Sanibel; and Marina, 14, went to New York City with her mother—with a special side trip to Kleinfeld Bridal, where one of their favorite television shows, “Say Yes to the Dress,” films.
“I didn’t tell her how much I wanted this,” Spencer-Wendel writes. “To visit Kleinfeld. To watch my daughter walk out of the dressing room in white silk and see her, suddenly, 10 years in the future, in the back room before her wedding, in a moment I will never share.”
At first it was awkward. The store was a conveyor belt of mammoth white dresses, and both mother and daughter were slightly overwhelmed—and they were not shopping. However, after a few false starts, Marina disappeared to try on a dress, just for fun. And then the dressing room door opened.
“I could clearly see the beautiful woman she will be one day,” Spencer-Wendel writes. “I simply stared. What do you do in brightline moments, when your loss womps you on the head? When you glimpse a moment you will not live to see? I dipped my head. ‘Breathe,’ I told myself. I looked up. I smiled, and Marina smiled back. I worked my tongue into position to speak. ‘I like it,’ I said.
“Marina usually stands with a teenage hunch, but in that dress she stood straight, radiant and tall. ‘You are beautiful,’ I whispered, my tongue barely cooperating. I don’t know if she heard me. I was slurring and fighting back tears. We took some shots. And moved on. A memory made.”
Preparing for the Inevitable
The book debuts March 12, and the movie is next. She says she was a little adrift when the book was completed and, now, she is “trying to figure out” where she is exactly. She admits that, as the disease has progressed, it has gotten harder to maintain that live-in-the-moment joy. She says it’s “tempting” to feel sorry for herself.
“But why choose to be miserable?” she says. “It is mind over matter. You have to master the mind. Do you know that TV show, ‘My 600-pound Life?’ I relate to those people. They are disconnected from their bodies. It is the same way for me.”
She cannot tell you why she is able to face ALS without flinching, or how she has a reservoir of joy in the face of it. She says simply that it is in her nature, that she has always been like this.
“Some of this is from my parents as well as the nature of my birth mother—our natures are very, very similar,” she says. “My parents taught me goodness and being kind to people, and it’s also the hard work they instilled in me. … I should have been a Buddhist. I believe desire is the root of all suffering. Wanting, wanting, wanting will drive you crazy.
“I decided that this is the way I want to be and I am unwavering. I have peace of mind. I have done everything possible to make things easier for my family, and they will all be well taken care of. That’s the only thing that matters. If I die this year, I die this year. There’s nothing I can do about it.”
When asked if she has thought about how she would like to make that exit, Spencer says she “thinks about it often.” And she is compiling a list of books she wants read to her by her friends when she can no longer talk. “I want visitors to read to me,” she says. “And lots of iTunes.”
In the meantime, there is a trip to the Keys planned in April to watch manatees, and a movie to be made, and more afternoons in the magical sway of a chickee hut, with friends, family, children—and making every minute count.
“I have my moments,” she says, the smile widening, blue eyes shining. “But I am not afraid of anything. I am not afraid to die. It is a chance to know the secret of the universe—what’s on the other side.”
What is ALS?
The basics: Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. ALS is also known as Lou Gehrig’s disease.
Causes: No one is sure, but 1 out of 10 cases are thought to be due to a genetic defect. The other times, the cause is unknown.
What happens: In ALS, nerve cells (neurons) waste away or die, and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. When the muscles in the chest area stop working, it becomes hard or impossible to breathe.
Incidence: ALS affects approximately 5 out of every 100,000 people worldwide.
Symptoms: Loss of muscle strength and coordination that eventually gets worse and makes it impossible to do routine tasks such as going up steps, getting out of a chair or swallowing. Muscles used for breathing or swallowing may be the first affected. As the disease gets worse, more muscle groups develop problems. Other symptoms include weakness, cramps, paralysis, slurring of words, twitching of tongue and weight loss.
Treatment: No known cure. A medicine called riluzole helps to slow down the symptoms
Prognosis: Over time, people with ALS progressively lose the ability to function and care for themselves. Death often occurs within five years of diagnosis. About 1 in 4 patients survive for more than five years after diagnosis.
Everyone should keep a list of the little things they love
(Found on Susan Spencer-Wendel’s iphone, dated March 2012)
Smokin’ hot 4-inch heels
The sexy feeling I get while wearing them
When Gracie licks my face
When no one is screaming at home
Starbucks chai tea latte skinny
Freesia: the smell, the colors
The grace of an orchid
A chilled fine white wine
A friend to share it with
The silly feeling it leaves
Sitting by the dryer vent emitting fresh soapy air
Chinese potstickers, steamed not fried, with that soy-based sauce with little green onions
A beautifully iced cake, which tastes as good as it looks
Italian ice cream cake, preferably
A handwritten letter from a friend
A steaming bath in a claw foot tub
When my dog lies so close to me I can feel her heart beating
When my children do the same
When anyone I love does that
A cup of coffee first thing the morning. Cream and sugar please
The song “Clair de Lune,” because it reminds me of my sister
A pedicure when the lady rubs my feet and calves
Shel Silverstein’s book, The Giving Tree
When you can see rainbows in the sprinkler mist
When someone scratches my head for me