West palm beach Booksellers around the world are preparing to stock the story of a Florida woman who is dying of a neurological disease that has left her immobile.
Former court reporter Susan Spencer-Wendel — who was diagnosed with Lou Gehrig’s disease in 2009 — wrote the 89,000-word book on her iPhone using the only part of her body neck down that she can still move: her right thumb. Until I Say Goodbye, which hits bookshelves on Tuesday, is an account of her diagnosis and the year that followed, in which she took holiday trips and prepared to say goodbye to loved ones.
Spencer-Wendel, 46, says she hopes her book will inspire readers to make a conscious effort to live joyously. “Life is full of chapters,” she says, knowing well this is her last. Her greatest story, her toughest assignment, her final deadline.
Harper Collins has inked a $2.3 million deal for the book, and Universal Pictures followed it with a seven-figure deal for film rights. Spencer-Wendel’s job as a court reporter at The Palm Beach Post made her a local fixture, reporting on everything from the 2000 US presidential election recount in Florida to conservative commentator Rush Limbaugh’s legal woes.
She was on auto-pilot, locked in a routine of breaking news and “navigating the daily dance of sibling warfare” at home with her three children. It all changed one night in 2009, when, while undressing for bed, she noticed that her left hand was scrawny and pale, and starkly different from her right one. She went through a year of medical tests and a subsequent year of denial before doctors confirmed in 2011 that she had amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease.
ALS disease is a condition of the nerve cells in the brain and spinal cord. It causes nerve cells to die, meaning that messages from the brain are no longer carried to muscles. Most patients die within three to five years of diagnosis. After her diagnosis, Spencer-Wendel went to California to find her birth mother; to NY, where her teen daughter tried on wedding dresses for a day they’ll never share; to the Yukon to see Northern Lights; to the Caribbean, and on and on. Along the way, she wrote stories about her trips that caught the attention of Harper Collins. She believes Until I Say Goodbye is the best thing she has written. “I didn’t want to write a maudlin book. I wanted people to laugh,” she said.
What was once a constant rush to be first with her courthouse scoops has become a dash to live her remaining days. But she constantly looks on the bright side. “I listen often to one of my favourite rock songs, guitarist Eric Johnson’s ‘Cliffs of Dover’,” she said.
