Living With Joy

Published: July 8th, 2013

Category: Summer 2013

Update: Susan Spencer-Wendel passed away on Wednesday, June 4, 2014.

Susan Spencer-Wendel’s book “Until I Say Good-Bye” is the fulfillment of her final wish: “To make people laugh and cry and hug their children and joke with their friends and dwell in how wonderful it is to be alive.” Here’s her story.

Susan, George and Nancy

Susan, George and Nancy pictured along the Mediterranean Sea at Fig Tree Bay where George’s parents have a vacation house.

When Susan, George and Nancy were studentsSusan Spencer-Wendel, MAMC 1991, covered the murderous grit and grime of Palm Beach County’s criminal courts for more than a decade, but her spirited account of her own face-off with death is what’s now making her known around the world.

“Until I Say Goodbye, My Year of Living with Joy” lays bare Susan’s life, travels and relationships after being diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. The disease gradually causes nerves throughout the body to die, leading to total paralysis and usually within a few years, death. Susan tapped out all 357 pages of the book on her iPhone using her right thumb, the only digit that remained functioning.

Determined to salvage as much happiness as possible from what she estimated to be her one remaining year of reasonably good health, Susan embarked on a series of trips with family and friends. Some of her UF College of Journalism and Communications classmates are central characters in the book. One of them, Nancy Maass Kinnally, MALAS 1991, MAMC 1995, Susan’s lifelong best friend, shares their story.

Nancy’s story

In the spring of 2009, Susan called me at work one day from South Carolina, where she had been vacationing with her family at the beach, to say she was returning home to West Palm Beach ahead of the rest of the family. She had to get back to see a neurologist because she’d noticed a strange weakness in her left hand.

She thought it might have something to do with a bad fall she’d taken while rollerblading. She’d seen the doctor once already, and he hadn’t seemed too concerned, but he wanted her to come back for some tests. She said her husband John had mentioned the possibility of ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, but the doctor thought it unlikely. When John first brought it up, Susan didn’t know what ALS was.

My mind quickly jumped to what I knew about ALS. I knew the story of Lou Gehrig, whose major league baseball career had been cut short by the disease that came to bear his name. I knew that ALS was fatal, often within just a few years. That it gradually destroyed the nerves that controlled one’s muscles, leaving a person trapped inside his or her body, yet fully aware. I had always thought of it as an awful way to die, little by little like that. I tried to push the possibility out of my mind.

Susan is awarded the Alumna of Distinction awardsusan_smile_left_cropsusan_smile_left_cropsusan_smile_left_crop

Clockwise, from top: In March, the College presented Susan with the Alumna of Distinction award while her family and friends watched; Susan laughing with friends under the chickee hut in her backyard, Susan and her husband, John, and Susan and her iPhone.

For Susan, then 42, one of the first concerns — as a mother of three — was whether she had a neurological disease she might pass on to her children.
Adopted as an infant, Susan had just the year before become acquainted with her birthmother Ellen Swenson after Ellen sought her out through the adoption agency. So Susan was quickly able to determine that there was no history of neurological disease on her mother’s side. That left her biological father, who had died several years earlier without ever knowing of Susan’s existence.

As it turned out, a connection Susan and I made in 1990 at the University of Florida College of Journalism and Communications would be key to her journey of discovery, not only of her father’s medical history, but also of some of the puzzle pieces of herself that had come from him. The infinitesimal traces of his DNA that showed up in her personality, tastes and gestures. Her fearlessness. Her sense of adventure. The way she squints and kisses good-bye.

The journey began with a simple act of kindness.

In 1990, Susan had volunteered to serve as a sort of ambassador to some arriving international students in her master of arts in mass communication program. She helped orient George Sycallides, MAMC 1991, and Jenny Rawlinson, MAMC 1992, to Gainesville, took them grocery shopping and made them feel welcome.

“We will laugh more than we cry,” she recalls me telling her after her diagnosis. But that would not have been possible if she had not shown us how.

And when a serial killer began his sudden rampage through local apartment complexes right at the start of the semester and students were fleeing Gainesville en masse, we found George and Jenny refuge in my parents’ house in Palm Beach for the Labor Day weekend.

Susan and I had been best friends since seventh grade, had gone to college together at the University of North Carolina at Chapel Hill and were then grad student roommates in Gainesville’s Duck Pond neighborhood. She knew my empty-nester parents had a big house where their kids’ friends were always welcome. So George, who was from the Mediterranean island nation of Cyprus, and Jenny, a Brit, came with us.

And so it was that Gainesville’s darkest hours, when Danny Rolling killed five students over the span of just a few days, gave rise to a bond among us that lasted through graduate school at UF and beyond.

When Susan learned that her biological father was from Cyprus, George was just a quick Google search away and eager to help, even though we had not seen him in nearly 20 years. Then director of Mediazone, a television production unit at the University of Nicosia, George ferreted out Susan’s Cypriot family in a jiffy and broke the news to them that they had an American cousin.

In “Until I Say Good-bye,” Susan describes our 2010 reunion with George in Cyprus and first meeting with her relatives there, our return to Cyprus in 2012 accompanied by Ellen and Susan’s husband John, and a series of other trips Susan took after learning in the summer of 2011 that she did, in fact, have ALS.

The Palm Beach Walk to Defeat ALS

Susan and her friends and family participated in the Palm Beach “Walk to Defeat ALS” on March 23. Her team, SpenWen, raised more than $16,000.

“We will laugh more than we cry,” she recalls me telling her after her diagnosis. But that would not have been possible if she had not shown us how.

Susan made the choice to go on living with joy. For her family’s sake as much as her own, she chose happiness over despair, just as consciously as she would always choose a pair of designer shoes over a cheap knock-off. And for the same reason: quality matters.

Another Susan trait is that she doesn’t complain. Not through brutal staffing cuts at The Palm Beach Post, where she still managed to turn out prize-winning work after losing the use of her left hand — work that culminated in a Lifetime Achievement Award from The Florida Bar for her coverage of Florida courts.

As the creeping paralysis spread from Susan’s left hand throughout her body, taking not only her mobility, but also gradually her speech, Susan did not retreat.

Instead, she took her personal ambitions off hold. She invited me to travel with her to Canada’s Yukon Territory in an effort to witness the celestial phenomenon of the Northern Lights, something she’d always wanted to do. She headed with John to Hungary, where they’d spent the first years of their marriage, to celebrate their 20th anniversary. She wrote about these trips for the Post. Sublimely.

It has been one of the greatest joys of my life to be at her side… and to learn a lifetime of lessons about grace and dignity and love just by being close to her through the process.

And when a friend at the Wall Street Journal offered to blog about her writing, she asked him to mention in his blog that she wanted to write a book. Posted on Facebook, that blog came to the attention of a friend of a friend who knew a literary agent in New York. And within a few weeks, Susan had a book deal and a movie deal totaling millions.

It has been one of the greatest joys of my life to be at her side through many of her travels, to watch her work diligently on the book, tapping away at her iPhone, to read passages on my iPhone as she sent them to me when I was back at home in Orlando, to see the book come together, and to learn a lifetime of lessons about grace and dignity and love just by being close to her through the process.

And it was a special thrill to be present — along with our dear friend George, who had come all the way from Cyprus — when the University of Florida College of Journalism and Communications presented Susan with a rare Alumna of Distinction Award right there in her now-famous backyard chickee hut.

“It’s all so odd,” Susan said to me one day between interviews for NBC’s “Today Show” and calls from her agent about the search going on in Hollywood for a screenwriter to adapt her book for Universal Pictures.

“Odd indeed,” I thought, that none of it would have happened had she not been diagnosed with a fatal disease. That our extraordinary friendship, once something we enjoyed in blissful anonymity, would perhaps soon be fodder for Hollywood, that this incredible literary success would soon come at the price of her life. And that Susan was at peace with it. Actually, not just at peace with it, but enjoying it.

Videos

Feature video

Interview with Susan Spencer-Wendel

Interview with Nancy Maass Kinnally

Interview with George Sycallides