Writer Diagnosed with ALS Taps Out Book with Thumb
(NEW YORK) — Susan Spencer-Wendel only Googled ALS once. And then never again.
Instead of focusing on the debilitating disease with which she was diagnosed in the summer of 2011 at the age of 45, the former Palm Beach Post court reporter set out on a year-long journey of joyous living.
The year included a special trip with each of her three children, discovering her birth parents, trekking to the Yukon to see the auroras, tattooed permanent makeup and supervising the building of a tiki hut in her Florida backyard.
Spencer-Wendel’s story is chronicled in her book, Until I Say Good-Bye: My Year of Living With Joy, available on Tuesday. The book was, in large part, tapped out with Spencer-Wendel’s right thumb on her iPhone as she lost the ability to use her hands.
Spencer-Wendel, 46, wrote the book as a gift to her children, but singled out the most important message she wants readers to take away from it.
“Live with joy no matter what! It is possible,” Spencer-Wendel wrote to ABC News in an email.
Emails from her iPhone end with, “Sent from my iPhone. Thank God for technology.”
ALS, amyotrophic lateral sclerosis, is more commonly known as Lou Gehrig’s disease. It’s a disease that affects the nerve cells in the brain and spinal cord. As the nerve cells die, messages cannot be sent to the muscles, which slowly leads to weakening and the inability to move. Patients often die within three to five years of diagnosis.
“I can’t fight what is happening to me,” Spencer-Wendel wrote in the book. “There is no cure for ALS.”
When Spencer-Wendel suspected she had ALS, she considered hiring a hit man to murder her.
“I had sat in court with hit men many times,” she wrote. “I was uniquely qualified for a premeditated murder — of myself.”
But she ditched the idea: “Dumb idea. Messy. Awful.” She also bought two books on suicide, but never read them and knew she could not do that to her family.
Despite her honest telling of some of her darkest moments, her joyful stories far outnumber the sad ones.
After being formally diagnosed in June 2011, she said she knew she had at last one more year of good health. Sitting in a Burger King parking lot with her husband John who “can eat at any time,” she decided to make the most of her year.
“To take the trips I’d longed to take and experience each pleasure I’d longed for as well. To organize what I was leaving behind. To plant a garden of memories for my family to bloom in their futures,” she wrote. “Lou Gehrig was an athlete. ALS took his talent immediately. But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent.”
Copyright 2013 ABC News Radio