A healing circle, Vermont family turns to community in battle against Lou
Gehrig's disease, Burlington Free Press, May 31, 1999. by Anne
The family and friends of Curtis Vance of Danville first
felt a hint of the trouble to come last summer, when his legs started to lose
their strength. For Homer Fitts, 72, it was the September day he and
Vance, 25, helped a neighbor harvest his corn. Vance was driving the
"His legs were getting weak," said Fitts, a
longtime friend of the family. "Someone else had to get out to open
the gate because he couldn't get up."
Fitts knew there must be something seriously wrong, but he
had no idea what it was.
Vance himself had noticed the weakness a month before, in
August, when he found he was struggling to carry some building materials up a
step. He and his girlfriend, Heidi Erdmann, assumed he'd been getting too
much sun, or too much exercise. They both had. He was working
12-hour days at his job at IBM, and on his days off was doing construction with
his friend Jon Webster. She was working as an assistant tennis pro at the
Basin Harbor Club in Ferrisburgh. They thought if it wasn't just plain
fatigue, it might be a reaction to some pork he'd eaten at a barbecue.
But as the summer passed into the fall, Vance kept getting
weaker. He started visiting doctors for the first time in his life.
The doctors thought it might be trichinosis, too, from the pork. But they
weren't sure, and they sent him to other doctors.
"Every day was a little bit worse," Vance
said. "The next thing you know, you're walking funny, you're walking
with a cane. It's scary."
Vance started using a walker. By November, he was going
to bed at 7 p.m. and sleeping right through the night.
Erdmann was sure there was an answer to their questions about
his weakness. A Middlebury College graduate who coached the men's tennis
team there, she was determined to find a solution.
"I would get up and search the Internet, and search, and
search," said Erdmann, 24. "I'm a very inquisitive person and I
like to know what's going on."
'Like a death sentence'
What she found out was information about amyotrophic
lateral sclerosis or ALS, also known as Lou Gehrig's disease, a paralyzing and
fatal motor neuron disorder. ALS is very difficult to diagnose, and
doctors probably don't want to make the diagnosis, said Erdmann.
"It's like a death sentence," she said.
But not to Erdmann and Vance. Knowing there is nothing
medical science can do, they are now seeking to harness the healing powers of
their community. This spring, the couple started holding weekly healing
circles at their house in Danville. Neighbors and friends come to offer
whatever help they can.
ALS is a neurological disorder that starts as muscle weakness
and leads to paralysis. While ALS sufferers cannot move the affected areas
of their bodies, but their intellectual functioning remains intact. In
Vance' case, the paralysis started in his legs, has partly affected his arms,
and is now hindering his breathing. At night, a machine helps him
breathe. He gets around in an electric scooter that he refers to as his
Half of all ALS sufferers live at least three or more years
after diagnosis. Twenty percent live five years or more; up to 10 percent
will live more than 10 years.
Although nobody knows what triggers ALS in people who are
carrying the gene, anyone with the gene can expect to get it sometime in their
lifetime, said Diane McKenna-Yasek, an ALS research coordinator at Massachusetts
General Hospital in Boston. Ninety percent of ALS is completely random,
with no genetic basis.
A family history of ALS
In Vance's case, the genetic basis was strong. It
goes back 200 years, although that long link was not evident at first.
The tragic history tumbled out over time from various
Vance's grandmother died in the 1960's, at the age of 39, of
a fast-moving disease then called progressive bulbar palsy. Another aunt
died of something then called spinal muscular atrophy.
Vance's mother, Linda, had heard there was a family disease,
but she didn't know what it was or what the likelihood was that she carried
it. Her own mother didn't tell her. Her aunt died of it at 49.
"My whole life has been under this black cloud over my
head because of this," said Linda.
The family called Massachusetts General Hospital, and spoke
to McKenna-Yasek. Linda Vance knew her great-great-great grandfather,
Samuel Farr, had died of ALS at the age of 42 in 1865 in Newark, Vt. He
was ill with it for two years.
They learned that McKenna-Yasek already knew about Farr and
Linda's family; the hospital had a thick sheaf of documentation on the
generations that had left the Danville area. They learned Farr's brother
and sister had also died of ALS, at ages 50 and 54.
Of Farr's eight children, four died of ALS - one daughter at
age 27, said Erdmann.
"It's a fairly incredible family as far as the history
goes," said McKenna-Yasek. "This family Farr was actually
recorded in the medical journals in the 1800's."
After the diagnosis, Vance and Erdmann had a hard
winter. As Curtis' 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 gave him blinding headaches.
Erdmann left her job and the couple moved out of the
apartment they shared in New Haven to Vance's home town of Danville, where his
uncle Hollis had recently built a house for his retirement. Vance and
Erdmann moved into the house, and his uncle and aunt stayed where they were.
"Yes, it's incurable. But we can go past
that," said Erdmann, who first met Vance when she visited her grandparents
each summer in Danville as a teen-ager. The two started dating when she
was in college. "We've really learned how to surround ourselves with
And they asked for the community to join them for healing
The healing circles are cheerful occasions. The
neighbors crowd the side table with banana bread and brownies and stand around
in the living room swapping greetings and anecdotes. Many are the age of
Vance' parents, and remember Vance as a newborn baby. They often speak of
his mother's pride in him. Some have been in Danville for so long they
remember Vance's parents as children. Old friends joke with his father,
who served in the Legislature for 10 years.
The healing circle is an organized event that lasts an
hour. A facilitator, Diana Webster, leads the 25 or so participants
through breathing exercises, directing them to send positive energy toward
Vance. In one part of the evening, the group touches Vance to send the
energy through their hands. She asks people to think of Vance and Erdmann
in positive, happy, healthy times.
Some of the people at the circle wholeheartedly believe in
energy healing and have done it before. Others are deeply skeptical but
they want to help in any way they can.
And all of them say it helps them to visit Vance and Erdmann
and to show their love and support.
"This disease just makes me feel powerless, absolutely
powerless. This is one way of getting some kind of power," said
Jenness Ide, who remembers Vance as an infant.
Erdmann, who has invited everyone in town to the healing
circles, whether they know Vance or not, didn't ask everyone to be positive, but
they are. She is too.
After all, doctors have no idea what triggers ALS, either in
people who carry the gene, or in people who don't (about 90 percent of all ALS
sufferers). It seems completely random. With that much mystery
around it, there's no reason to believe it can't be beaten, Erdmann said.
Seeing the bright side
As for Vance, he says he has a peace of mind that he
didn't have before. Now that he's not working as many hours as he can to
earn as much money as possible, he finally has time to spend with Erdmann,
reading, talking, or just hanging out. Both of them say their relationship
has blossomed in a way that would have been impossible within the limits of
their old schedule.
Vance still wishes they could go back to the initial
diagnosis, of trichinosis.
But Fitts has adapted his dock and his boat so Vance can get
out on Joe's Pond with him to go fishing this summer, and he's looking forward
And he's noticing the beauty of the rural Northeast Kingdom
town where he grew up for the first time.
"We've get these beautiful mountains," he
said. "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."
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