The Atlanta Journal-Constitution
After 30 years, the Tin Man meets the ‘Spirit in the Sky’
I spent a couple of decades around boxing gyms, but David Jayne is probably the toughest guy I ever met.
But after 30 years of fighting ALS, David decided last week to pull the plug.
I read on Facebook it was happening, contacted him, and then raced an hour south to his home in Senoia.
He held off on the procedure until I arrived, despite a medical team and a room full of people. That was one of the greatest honors I have received.
“I got no fight left,” he told me through his computer, twitching the contraption on his cheek to find the right letters on his screen to convey a message. “I’m tired.”
Then he played the Guess Who song, “No Time Left for You,” followed by “Spirit in the Sky.”
It was his humor and stubborn determination that drew people to him. Also his resourcefulness, brutal honesty and enduring optimism. For decades, he clung to the hope that he’d somehow be the guy to beat this monster. He knew it was Powerball odds. At least. But a guy must dream.
We met in 2000 and I soon got David in trouble. We hung for several weeks and I witnessed an incredible will to live. He ran an internet chatroom for ALS patients and their families, which was new at the time. Technology and internet access have been a godsend to the locked-in population. He became a central figure in that community.
I followed him to an inspirational speech he gave to physical therapy
students. I also noted that the University of Georgia grad and Bull Dawg football fanatic, attended — with great help — the annual GeorgiaFlorida game in Jacksonville, Fla.
His home health care was funded by Medicare, which carried a stipulation that to be declared “homebound” you could not leave except to go to the doctor or church. I asked him about this. He said he wouldn’t let some bureaucrat turn him into a prisoner.
We ran a long Sunday feature called “The Tin Man’s Heart” (he called himself the Tin Man, like the immobile character in the “Wizard of Oz.”) Sure enough, his home health care was cut off. It turns out, that was his intention. I unwittingly helped him commit civil disobedience.
The move caused a firestorm. He formed a group to fight the rule. U.S. Sen. Bob Dole befriended him and joined the cause. He made trips to D.C. It was like the movie, “Mr. Smith Goes to Washington.” Just more improbable.
In the end he won, barely lifting a finger. President George W. Bush signed an executive order relaxing the law.
“It’s difficult to have your voice heard when you cannot speak,” said Julie Scurich, an occupational therapist who helped with David’s online chatroom. “He was unwaveringly determined and incredibly resourceful in overcoming obstacles. He made friends with everyone in his path. And they stayed with him.”
David endured one of the worst nightmares imaginable. In 1988, the former Forest Park High School class president was 27, married and embarking on a finance career when he was diagnosed with a disease that would lay waste to his muscles and lungs, leaving him with a lucid mind in a useless body. He was given three years to live.
His wife then learned she was pregnant, so he had a reason to live. They had another child. More reason.
In 1997, he decided to go on a ventilator. By then, his
wife was worn down and unhappy with the decision. The marriage ended. The outcome is not uncommon. Perhaps 10 percent of the nation’s ALS patients choose the vent. The number is so low because you can live indefinitely, burdening all around you. You speak through a computer, breathe through a machine, get hoisted out of bed with a ceiling pulley and eat through a tube.
Is that living? Most people think not.
In 2004, he married a caregiver. Several years later, he
married another woman he befriended over the internet. Neither marriage lasted.
The past decades were spent giving advice and support to other patients — especially new ones reeling from their recent death sentences. He became a guinea pig, having a device with a small antenna implanted into his brain to help him communicate as his fingers died. It didn’t go well. Neither did his endless quest to find good care.
His support system was a patchwork of his retired parents, friends, volunteers from church and paid live-in caregivers. Neither insurance nor Medicare pays for the round-the-clock support — care that must be diligent and patient. Sometimes he found a good person. Often he did not. He told me he had at least a couple of drunks and a lady he suspected of pulling prostitution as a side job.
“The incompetence, disrespect, laziness and theft I endured is beyond belief,” he once told me.
Still, he put up a good front.
Here are some things he wrote last year:
■ “What was the most devastating news I had received at that point in my life has morphed into a gift by keenly sharpening my appreciation of time.”
■ “Fearless living is the only way to experience the brief layover we have on this big blue marble. Yes, life still happens, but it is dealt with in the present moment rather than wasting precious time and energy worrying.”
■ “I am awestruck by the metamorphosis my life is undergoing. All of the decades of negative has been purged from my being. I am on the grandest high I’ve ever known.”
In March, he emailed to say it was 30 years since his diagnosis. “It took 30 years, but I have the healthiest care situation I’ve ever had. I have two live-in caregivers that split the week. The best part is I have become financially independent, what a relief!”
Last month, he wrote to say the “wheels fell off ” and he did not think he could go on, adding, “It’s alright, Bill. I gave it my all for thirty years.”
This led us to last week and a room full of friends and family and David’s morbidly whimsical playlist in the background.
I called Meraida Polak, manager of ALS research at Emory University, who has known him since his diagnosis.
“We call that being released,” she said. “We have this pro-life environment, but it doesn’t cover people with ALS.”
After a kiss from his mother, Georgia, the medical team sedated David Jayne and removed him from the vent. After a little more than an hour, nature, 30 years later, finally took its course.