|
Copyright © 1999 Nando Media Copyright © 1999 Associated Press By ANNE WALLACE ALLEN
DANVILLE, Vt. (June 27, 1999 12:41 a.m. EDT
http://www.nandotimes.com) - Curtis Vance noticed the first hint of trouble last summer, when he started losing strength in his legs.
Homer Fitts recalls the September day when he and Vance helped a neighbor harvest his corn. Vance was driving
the truck. "His legs were getting weak," says Fitts, 72. "Someone else had to get out to open the gate because he couldn't get up."
A month before, Vance, 25, struggled to carry building materials up a step.
Maybe it was too much sun, or
too much work. He was putting in 12-hour days at his job at IBM and working construction with his friend Jon Webster on weekends. Or maybe it was the pork he'd eaten at a barbecue.
As summer passed into fall, Vance grew weaker. He visited doctors
and they, too, thought it might be trichinosis from the pork. But they weren't sure, so they sent him to other doctors.
"Every day was a little bit worse," Vance says. "The next thing you know, you're walking funny, you're walking with a cane.
It's scary."
Soon, Vance started using a walker. By November, he was going to bed at 7 p.m. and sleeping right through the night. In December, he learned what was wrong. It wasn't fatigue or bad pork.
It was amyotrophic lateral sclerosis -
ALS, commonly known as Lou Gehrig's disease.
"It's like a death sentence," says Heidi Erdmann, Vance's 24-year-old girlfriend. ALS kills, and before it kills it weakens and paralyzes.
For some couples, this would be the end of the story.
But for Vance and Erdmann, this diagnosis was the start of an odyssey of the heart.
It has taken them into spiritual realms: Each week friends and family gather for healing circles, trying to achieve with faith what science cannot do. Strangely,
unexpectedly, it has enriched their lives. And it has helped them understand how this disease has cursed his family for generations.
For 10 percent of those who contract the disease, the cause is genetic. For reasons unknown, anyone with the gene
can expect to get it sometime in his life, says Diane McKenna-Yasek, an ALS research coordinator at Massachusetts General Hospital in Boston.
Vance' mother Linda had heard of a family disease, but she didn't know what it was or the likelihood that
she carried it. Her mother died in the 1960s, at 39, of a fast-moving disease then called progressive bulbar palsy. His aunt - Linda's sister - died of something then called spinal muscular atrophy.
All of these diseases are in fact one and the
same: ALS.
It was ALS, Linda Vance knew, that killed Samuel Farr, her great-great-great-grandfather, in 1865, two years after he fell ill. He was 42.
"My whole life has been under this black cloud ... because of this," she
says.
After Curtis Vance was diagnosed, the family contacted McKenna-Yasek and discovered that their new doctor was already well acquainted with their family curse.
The hospital had a thick sheaf of documentation on Vance ancestors who had
left the Danville area. They learned Farr's brother and sister had also died of ALS, at ages 40 and 54. Of Farr's eight children, four died of ALS - one daughter at age 27, says Erdmann.
"It's a fairly incredible family as far as the history
goes," says McKenna-Yasek. "This family Farr was actually recorded in the medical journals in the 1800s."
The roll of the dead gave Vance no reason to hope. The winter was hard. As Vance's condition deteriorated, doctors put a pump into his spine
to administer an experimental medication. He was flat on his back for weeks, and the surgery left him with blinding headaches.
Erdmann cried a lot. "At the beginning, it was all doom and gloom," she says. "First we were faced with the unknown.
Then we found out it was this incurable disease. That was total helplessness."
But Vance wouldn't let her sit around feeling sad. "He always says, `Whatever it is, we're going to deal with it. I'm going to be better.' He needed me to stay
strong."
She and Vance met as teenagers when she visited her grandparents each summer in Danville. He was a standout high school athlete; she, a competitive tennis player. As athletes, they learned the power of a crowd's energy when it's focused
on one point, or one person.
And that is how the healing circles began.
Each week, neighbors stand beside a table covered with banana bread and brownies, and swap greetings and anecdotes. Many remember Vance as a newborn; they often speak
of his mother's pride. Some have been in Danville so long they remember Vance's parents as children. Old friends joke with his father, who served in the Vermont legislature for 10 years.
Vance sits in a recliner, chatting.
Each session
lasts an hour. A facilitator, Diane Webster, leads two dozen participants through breathing exercises. She tells them to send positive energy toward Vance, to touch him to direct the energy through their hands. She asks them to think of Vance and Erdmann
in positive, happy, healthy times.
Some people at the circle wholeheartedly believe in energy healing and have done it before. Others are deeply skeptical but want to help any way they can. All say it helps them to visit Vance and Erdmann and to
show their love and support.
Jenness Ide, one member of the circle, says, "This disease just makes me feel powerless, absolutely powerless. This is one way of getting some kind of power."
Vance' mother cries a lot at the sessions. She
believes in miracles.
"I don't think we have any other choice," she says. "There is no hope otherwise. If this doesn't turn around, it gives no hope for anybody else in the family, and we have a very extended family."
Erdmann believes,
too. She thinks "any disease originates from both outside forces and from within. Yes, you can have a genetic mutation so you're more inclined to get ALS, but there's a reason for getting it; there's a reason that Curt at age 25 got it, and not his four
brothers, and his mother.
"Curt and I believe it's a reason that's above us, it's unexplainable, it's a spiritual reason. There's a point: Curt was meant to do something."
The disease has progressed. At night, Vance breathes with the help
of a machine. He gets around in an electric wheelchair he calls his "big rig."
Still, in some ways, ALS has liberated Vance.
Now that he's not working as many hours as he can to earn as much money as possible, he has time to spend with
Erdmann - reading, talking or just hanging out. Their relationship has blossomed in a way that would have been impossible before he was forced to slow down.
"We've become so spiritually in tune that I feel very often that we're one," Erdmann says.
Vance has been working with a Brattleboro doctor who is helping him think about, and talk about, what the disease means to his life. He's meditating a lot, something he never did before.
"There are a lot of different ways of approaching
this," he says. "It's not that bad. I could have gotten hit by a car, but here I've got all this time. And like I always say, who knows?"
Vance still wishes they could go back to the initial diagnosis of trichinosis. "Wouldn't that be great?"
he says.
But mostly, he dwells in the present.
Homer Fitts has adapted his dock and his boat so Vance can get out on Joe's Pond with him to fish this summer, and he's looking forward to that. Vance jokes with his parents, complains about
the way the local news covers high school basketball. And for the first time, he notices the beauty of the rural town where he grew up.
"We've got these beautiful mountains," he says. "I've lived here my whole life, and I saw them, but I really
never noticed them and their beauty. Now I do all the time."
He and Erdmann couldn't have done it without the healing circle.
"Yes, it's incurable. But we can go past that," says Erdmann. "We've really learned how to surround ourselves
with positive people." |
|