This is a life or death effort. And one to set someone free.
David Jayne needs money to stay alive. He’s a hard-headed man who’s been trapped in a useless body going on three decades now, and he has decided to continue living under circumstances that would cause most folks to bail.
Jayne, who suffers from amyotrophic lateral sclerosis, or ALS, has conceded that his will to live can be considered selfish. The daily logistics of keeping him alive put an exhausting and grueling burden on others. Just getting him up and ready each day — rather than allowing him to lie motionless in bed — takes hours.
And there’s the rub: Jayne and his wife, Carey, are splitting up. He lives in a log cabin in the boonies down by Senoia, and no one will be there to care for him for most of the day once she leaves.
“My present living situation will soon end. I cannot afford 24/7 care,” he said.
But he doesn’t want anyone blaming Carey. “No judgments, please. No one else has walked in her shoes.”
So Jayne threw a desperation pass in the form of an online campaign on Kickstarter, a drive that required him to raise $30,000 by Wednesday night, or get nothing.
All-or-nothing is nothing new for Jayne. That’s how he’s lived for years.
I met him in 2000 after I saw a story in the Catholic newspaper describing how a church congregation banded together to help an immobile man. The article off-handedly mentioned that his wife had recently left him, albeit some 12 years after he was stricken and two years after he decided to go on a ventilator. Going on a vent can prolong the life of such a person indefinitely — see Stephen Hawking.
My profile of Jayne — called “the Tin Man,” after the rusted and immobile “Wizard of Oz” character — explored the indomitable spirit of a man who “speaks through a computer, breathes through a machine, eats through a tube and can only twitch three fingers.”
Credit: By Bill Torpy
Credit: By Bill Torpy
The use of those three fingers is now long gone, and he communicates through a Bluetooth device activated by twitches on his cheek, which, in turn, speaks to his computer.
In my 2000 story I mentioned that Jayne’s friends had managed to take him to Jacksonville to attend a Georgia-Florida football game. The trip cost him his home-care Medicare benefits, because he left his home to do something other than see a doctor. Before the article was published, I asked him if I should mention that he went to the game. He insisted I do. It was an act of civil disobedience.
Getting cut off caused an angry public and political outcry. He was featured on national news shows, in People magazine, testified in Washington and was befriended by Sen. Bob Dole, who called Jayne a “hero” in a op-ed the onetime presidential candidate wrote in the Washington Post.
Jayne was on hand when President George W. Bush signed a health care law that included a “home-bound” provision, although it was watered down from what he wanted.
In 2004, I wrote a Christmas story about Jayne getting married to a French Canadian woman who moved to Georgia to be his caretaker. Jayne’s mother called it a “miracle,” but ultimately, it was not to be: The marriage disintegrated.
In 2011, I wrote about Jayne again. He had turned 50 and survived 23 years with ALS, a rarity. And he had another woman in his life. Carey Geyer, a Michigan native, had fallen in love with Jayne after they met over the Internet talking about ALS, a disease that killed her father.
Jayne at the time called the union a “fairy-tale conclusion.”
Jayne and Carey and her children from another marriage moved from Jayne’s Clayton County home to the farmhouse near Senoia, about an hour south of Atlanta. The plan was to open an event center in a building on the ranch, an effort to provide a revenue stream that would take some of the endless pressure off Carey.
But the property was not zoned properly. Without the income they had envisioned, they couldn’t hire home health care. As for the rest of his family, Jayne’s father, who oversaw his care, died. Jayne’s mother is old, and his sister lives in Italy. Everything was on Carey.
Early this summer, Jayne took the ALS Ice Bucket Challenge. He added a commentary on the toll the disease takes not only on victims but on their families. The video went viral, getting shared more than 20,000 times on Facebook.
I’ve stayed in touch with Jayne and in October figured something had gone bad when he posted: “This extraordinary woman loved me with her entire heart. I know she still does, but I am responsible for the deterioration of our relationship. You do not know her history or how much pain she has experienced so please be kind.”
It turns out the “fairly-tale conclusion” was a fairy tale.
Carey knew the score when she married him. But the isolation, the endless grind and his bad temper during treatment of a kidney malfunction (anger he says has now subsided) have been overwhelming.
“We both brought too much baggage to the marriage,” Jayne told me. “We didn’t have help with my care. That burned her out.
“She is going home to work on herself. I’m already seeing a therapist. The love remains and we’re not closing doors to the future.”
She often sobs when thinking of leaving and, he said, is “completely devastated” when people criticize her online for wanting to leave.
“She deserves all of the compassion in the world,” he said.
Carey was there when I visited this week. “I want the best for him,” she said. “I want him to be happy and safe. I’m sure he wants the best for me.”
Carey decided to stay until her husband is able to put a care plan in place. Her current departure date is January 14, but it keeps getting pushed back.
The $30,000 from the Kickstarter effort will provide about a year of care and allow Jayne to complete his autobiography. The effort started slowly and had raised about $20,000 when I called Jayne early last week. But the pace picked up, and on New Years Day he topped $30,000.
“I have lived longer with ALS than without,” he told me. “This is my life. Hitting my fifties I fully appreciate that a lifeline is over as quick as a gnat fart dissipates. No time to fight what I can’t change.”
But still plenty to fight.
About the Author
