Ride For Life: Singer battles ALS with humor, grace

ITHACA -- To grasp all that Carol J. Buckley has lost, you first need to understand what she had.

Look at the photo albums, watch the videos, listen to the CDs. There is Carol in costume at center stage, Carol making the crowd laugh with a well-timed wink, Carol singing in a trilling soprano.

Now Carol is growing paralyzed in increments, confined to a wheelchair, stripped of her voice and writing short strings of words in one corner of a white board. The changes have come rapidly, seven months after Buckley received an official diagnosis of amyotrophic lateral sclerosis, often called ALS or "Lou Gehrig's disease," an incurable illness that leaves the mind intact as the body's motor neurons degenerate.

Seeing the former version of herself that has slipped away so quickly leaves her with "mixed emotions," Buckley wrote this week in the living room of her Washington Street home.

"I'm glad I have them," Buckley wrote. "But my voice was such a part of who I am."

Friends and family say the disease has been especially cruel to Buckley, a natural-born performer who lost her prized singing voice first, an extrovert whose perfect comic timing is stilted by the clumsiness of the white board. She also suffers from a very fast-moving case of ALS, which leaves victims with an average life expectancy of two to five years but allows some to live with limited symptoms for longer, according to the national ALS Association.

Amid the family's anger, frustration and heartbreak, though, a bright spot has appeared: the support of a wide network of friends that 40-year-old Buckley has met living in Ithaca for three decades, working in Cornell University's library system and performing with the Hangar and Kitchen theaters and on campus.

"It's just restoring my faith in humanity," said Paul Heckathorn, 46, Buckley's husband of almost three years. "I tell Carol it's just her life coming back to her. It's coming back to her as it should."

On Saturday, around 50 people will perform at a benefit concert for Buckley. The event is open to the public and starts at 7 p.m. at the First Congregational Church, 309 Highland Road in Cayuga Heights.

Jennifer Lawrence Birnbaum, coordinator of the benefit, said she met Buckley about 15 years ago through the Cornell Savoyards, a music and theatre group. They remained friends, Birnbaum said, because of Buckley's "openness, her generosity. She smiles all the time. She's just really fun to sing with and she's really self-deprecating."

Almost 100 people have formed an informal group called "The Carolers" to help Heckathorn around the house, guide Buckley through a range of motion exercises and supplement the daily care that Buckley's parents and sister provide. Julia Bonney, a close friend, said the book they used as a "roadmap" suggested forming a network of about 20 people, but Buckley's group just kept growing.

Friends also sent Heckathorn and Buckley on a two-week trip to Italy around the holidays and gave them tickets to a couple Broadway shows for Buckley's 40th birthday in March. When the couple returned from Italy, members of the First Congregational Church had built a wheelchair ramp on the back of their house.

As kind as everyone has been, Heckathorn said, it's impossible to overlook the unfairness of it all: Carol was always so vibrant and healthy; why her? The couple didn't find each other until late in life; why them?

"The hardest part is knowing what this disease will do to you and you can't escape from your fears of losing who you are," Buckley wrote.

Those thoughts can get Heckathorn crying, Buckley's face scrunched up and other eyes in the room turning red -- but then a smile will often creep onto Buckley's lips and her trademark sense of humor saves the moment.

"We should buy stock in Kleenex," Buckley wrote on her board this week when the conversation turned teary after watching her old videos.

Approximately 5,600 people a year in the U.S. are diagnosed with the disease, according to the ALS Association. Only one drug, Rilutek, is marketed to help prolong the life of ALS patients, but Buckley and Heckathorn have decided against using it to avoid severe side-effects that could reduce quality of life in the time Buckley has left.

Spreading awareness about a disease that prevents its victims from advocating their own cause has become another big focus in Buckley's network. Buckley's brother, Eric, who lives in St. Louis, is also raising money through adventure racing in hopes of designing a better communication aide for ALS patients.

"One of the big reasons there isn't a big lobby effort is because people get ALS and then they die" before they can campaign for more research, Bonney said.

Although ALS is still poorly understood, even in the medical community, those closest to Buckley say watching her cope with a illness that continues to chip away at her has taught them a lot about the human spirit.

"We're all so proud of her," Heckathorn said.

Bonney added: "She's taught us a lot about grace."