Calling himself Mr. Long-Term Care and citing "promises to keep," he mans his Web site as Parkinson's whittles on.
By Michael Vitez
INQUIRER STAFF WRITER
CLIFTON PARK, N.Y. - Martin Bayne's fingers are so
stiff and swollen that every movement brings intense pain. Yet he's trying to
shake America awake. (
He is
barely able to rise from bed. Yet he has spent years standing up for the old and
frail.
He rarely has guests. Yet he is visited by thousands of
followers.
Bayne was once an insurance salesman specializing in long-term
care policies. But after a decade, he concluded that the abiding needs of the
public, whose savings could be swallowed up by illness or the mere ravages of
age, were not being served. Millions of baby boomers soon would require help
with the most basic tasks of daily life. And America wasn't prepared.
So
he anointed himself Mr. Long-Term Care and, in 1995, established a Web site - www.mrltc.com - where he began agitating for
change. It has developed into one of the Internet's best resources on long-term
care and aging, with an annual readership that he estimates at
750,000.
But along the way, in irony's merciless twist, he became an
emblem of his own cause.
At 45, Bayne was diagnosed with Parkinson's
disease, a deterioration of nerve cells in the brain that control muscle
function. For three years, he lived quite normally, even biking 26 miles a
day.
No more.
Bayne is only 50, but the Parkinson's, with its
ancillary illnesses, has advanced so rapidly that standing, making a fist, or
simply trying to calm his palsied fingers is excruciating. He cannot put on his
pants by himself.
"It hurts just to be alive," he said.
"But you get over it. It's interesting what you can live
with."
As his disease progresses, his world shrinks. Yet Bayne has
used technology to extend his reach.
He has six computers in his
two-bedroom apartment in this Albany suburb, but he works primarily from his
$6,000 hydraulic bed, "the command post." On a table at the side are a
desktop computer, a laptop and a three-line speaker phone.
Though almost
constantly in bed, Mr. Long-Term Care rarely sleeps - not only because his pain
won't let him, but because he doesn't want to miss one moment of life. He
borrows from Robert Frost: "I have promises to keep, and miles to go before
I sleep."
Bayne routinely works 22 hours a day scanning news sources
and 600 to 700 e-mail messages. He has recording equipment in a spare bedroom
for telephone interviews with the likes of Clint Eastwood and Jimmy Carter, '60s
guru Ram Dass and AARP president Tess Canja.
At night, he updates his
site with the audio, with items he has gleaned, and the blistering editorials he
writes.
"His Web site is a testament to what is possible even in the
face of chronic illness," said Bill Thomas, founder of an international
movement called the Eden Alternative, which seeks to revolutionize nursing homes
by eliminating their institutional character. "It is one thing for me to be
doing what I'm doing. He's doing it with a 200-pound weight on his
back."
As Bayne deals with isolation and physical limitation, his
view has broadened. What the country needs, he contends now, is not just a
comprehensive long-term care system, but something that must come first: a new
attitude toward our aging society.
"The culture doesn't know what to
do with people who are old and frail," he said. "We hide them away. We
have such a pathological view of aging. . . . They want us kept young forever,
having face-lifts. Until we deal with how we turn away from aging, long-term
care will always take a second seat."
The strain – emotional,
physical and financial – of his crusade has overwhelmed him. Two weeks
ago, he announced his intention to sell his site to another publisher after Jan.
1, although he would prefer to remain on as editor. The news set off an
avalanche of e-mail.
"The nation needs you!" Audry Kubota wrote
from Hawaii. "I just hope your successor has the zeal and stamina that you
do. Your voice must be heard."
Such sentiments make it difficult for
him to consider stepping back.
"I do everything," he said.
"I love it. But it's killing me. I've spent my entire $500,000 retirement
savings keeping this site going. I felt it was necessary to keep that torch
alive.
"But I need some
help."