Widowed at 25, town manager's daughter works to honor husband's memory,
Wethersfield Life, February, 2001. by Joyce Rossignol
When Heidi Erdmann and Curtis Vance fell in love, they had
no idea how brief or how hard their future together would be. She didn't
know what she wanted to do with her life. He was a happy go lucky guy.
They met at a party in the summer of 1990 and continued as
friends until the fall of 1995 when he invited her to be his date at a wedding,
and she says, "things just clicked."
A native Vermonter, Curt Vance was working in the computer
department at IBM in Burlington, Vt.
She was a student at Middlebury College in Vermont, where her
parents, Wethersfield Town Manager Lee Erdmann and Ginger Erdmann, who is a
physical education teacher in Hartford, have a summer place at Joe's Pond in
Heidi Erdmann graduated from Middlebury in 1997 and was
working in the development office and coaching the men's tennis team when she
and Curt Vance moved in together in an apartment in New Haven, Vt.
In 1998, she quit her job with the college and was, she said,
"trying to figure out who I was and what I wanted to do. I graduated
with a degree in English and knew I loved to write, but didn't know how to make
that a career. So I ended up as a tennis pro at the country club right
there in town."
Then Curt Vance got sick. The young couple did not know
then about his family "curse." They found out later that his
great-great-great-great grandfather Samuel Farr died in 1865 of ALS, which is
now also known as Lou Gehrig's disease. Through every generation, other
Farr family members suffered and died, but that was not talked about. One
great-grandmother went so far as to burn the records.
Meanwhile, in 1998, Heidi Erdmann was still searching for her
own future: "While Curt was in and out of hospitals trying to figure out
what was wrong," she said, "I was applying for different jobs. I
flew down to South Carolina for an interview. But Curt was a Vermonter and
he was never going to leave Vermont. I had to decide, 'do I stay here with
him or do I go?'"
On Dec. 15, 1998, diagnosed as having the A4V ALS mutation
gene which is the most progressive, he was given six months to live.
She said, "People say 'how incredible you stayed!'
I loved him. That was what it was all about. I loved being with
him. We had always been friends. We made one another laugh. We
fought like hell. A typical great relationship."
As long as he could, he kept working at IBM. The
company even gave him a laptop so he could work at home, which was a very good
thing. They desperately needed the insurance benefits. An aunt
loaned them her house.
By March of 1999, he was in a wheelchair. By June he
couldn't breathe on his own. He would have died had they not put him at
night on an external respiratory aid, a bi-pap, which is a machine that forces
air, as the diaphragm loses muscle to move up and down.
'Throughout the spring and summer, because he could no longer
move his right arm, he learned to become left-handed. By August he could
move nothing but his head. So I had to feed him.
"By September, he started to lose the ability to control
the muscles in his neck, so he had trouble swallowing and choked
frequently. In October we got a feeding tube. By the end of his life
he could only move his eyes."
Barring complications, she said, "you can live
indefinitely with a feeding tube and a respirator. There are people who
live like that. They have 24-hour care and some of them 'speak' through a
computer with their eyes. Curt and I made the decision together, that he
wouldn't do that."
On December 19, 1999, Curtis Vance died of respiratory
failure exactly a year after his diagnosis. He and Heidi Erdmann had been
married for 22 days.
They had started talking about marriage in the summer of
1998, in terms of maybe the next summer. She said, "Once I knew Curt,
my main focus in life was to get married and have children. But neither of
us were really ready. We knew we wanted to be together but we weren't
positive it would work out."
That uncertainty changed when Curtis Vance got sick.
She became his 24-hour caregiver totally committed to him, though they did not
actually get married until Thanksgiving weekend, when his life was almost at its
She said, "I pushed to get married. We were going
to sometime anyway and why let this stop us. His comment was 'I'm not
going to marry you and then die on you.' He was a stubborn man.
"So we lived for the whole year almost on that
thought. Then in October when we were at the hospital, we talked with one
of our ministers. She basically said you have made the decision not to get
a respirator so you probably have less than six months to be together.
Maybe you get married. Curt and I were both still a little skeptical, not
sure what would be the point. We kept saying, 'but we are married in our
hearts.' Then she said, 'don't you think you should stand before your
family and friends and before God and ask that you be united eternally?'
Curt and I looked at each other and said, of course."
So they had "this huge, totally normal wedding.
Curt could only move his head and his eyes, but he wore a tux. He sat in a
big recliner up at the altar. I sat next to him and with my two sisters
and his four brothers, we faced the congregation. About 550 people were
there in my mom's family's church in St. Johnsbury.
They planned to have a big wedding dinner in the
spring. Even though he had died, that celebration still took place in the
spring of 2000 and became the first fund raiser for the non-profit foundation
for ALS that they had started together during the last months of his life.
At first they coped with their own financial problems.
She said, "As long as Curt could work, IBM gave us a paycheck, and though I
had never waitressed before I had a job two nights a week at an Italian
restaurant owned by a good friend. At first I did it more just to get out
of the house. Later on it was for the money. Neighbors and friends
would come in and watch Curt while I was away."
Eventually they had a home health aide come in for an hour
and, near the end, three hours three days a week.
She said, "The reason I couldn't have any other official
help was that Curt's insurance didn't cover respite care. And because I
was living there full-time, they wouldn't pay for help. We struggled with
that because you need to rest sometime. But what can you do?
Insurance is insurance."
What they did have was a generous community of friends and
family who cared about them. "The town had a fund-raiser for us in
March of 1999, in Danville. We raised a little over $10,000 in one night
and from there throughout the summer there were smaller fundraisers. We
would get checks in the mail. It was unbelievable.
"Curt's ALS cost $200,000 a year. Our house was
full of machinery" to meet his needs. Those bills have all been paid
now, through life insurance and other sources. The foundation they created
was not for themselves but to help" others.
She said, "Two months before Curt died we started
creating our own non-profit foundation. The community had supported us
financially. That was absolutely wonderful for us." It made
them think of other victims of ALS who might not be lucky enough to live in such
a warm-hearted town, so they started a foundation to help them. Their
friend Beth Chamberlin, an actress who stars in "The Guiding Light,"
was involved from the beginning, and still is.
Through memorial contributions, the fundraiser that was going
to be their spring wedding reception and golf tournaments, by the end of the
year 2000 they had raised almost $30,000 and were giving their first donation of
$5,000 to Massachusetts General Hospital. Their goal now is to split the
money every year, half to individuals and half to research.
Heidi Erdmann Vance runs the foundation without a salary
right now, which she is able to do because she is living with her parents.
Eventually she would like it to be a full-time job that "I can give
everything to." Serving on the board with her are her father Lee
Erdmann, who is treasurer, her sister Tricia, secretary; Beth Chamberlin, and
Jen Hefner, who was originally from West Hartford but now lives in Chicago.
They were tentatively planning a fundraiser in Florida in
February. They are definitely holding another golf tournament in Vermont
in June. They hope to make that an annual event, with a lot of people
coming up for the golf in the morning and a dinner later on in a beautiful field
where an apple orchard is, "just a huge day," she said.
She is working on a non-fiction book, based on her journal
about her life with Curt Vance. "Last spring I got in touch with a
book packager, but I really wasn't ready. I would like to make it my story
but weaving in history of ALS in Curt's family and how different generations
reacted to it. I would like to include the perspective of the doctors who
treated Curt. How did it feel when they sat us down and told a 25-year-old
he had six months to live?
"And I want to promote the research. We are on the
brink for Alzheimer's, Parkinson's, and ALS, anything having to do with the
spinal cord and the brain.
"I feel like I am getting a grasp of what this book will
be about. I knew it would be about Curt and me, but there's only so much
of 'us.' I am more focused now. And there may be another book about
other victims of ALS, their stories, what they learned from it.
Everybody's story is different."
Curt Vance's story has been told nationwide. In the
spring of 1999, she wrote an article for the North Star, which is a small
newspaper in Vermont. An Associated Press writer from Montpelier read it
and picked it up for national distribution.
Near the end of his life, their friends gathered in healing
circles, sending positive energy to Curt Vance, visualizing him walking for
example, or playing tennis, and, as time went by, finding some comfort for their
own sorrows as well. When the AP reporter came to one of those meetings
she asked the dying man "what do you see as the purpose of this
gathering?" His answer: "to heal the community."
She says now, "As Curt got sicker, he came up with these
thoughtful things. He was so not like that before. He was a big
hard-working go-go guy who would never talk about his feelings.
Everybody's friend. He was voted Class Clown in high school. The
greatest smile. The greatest guy. Everybody saw that, but he had a
serious side he didn't let others see, except me."
"When Curt died, everyone was saying what a wonderful
life he had and I totally agreed. He had the love. That's what I
think life is about, learning to love people and allowing people to love you.
Right after Curt died, I felt so out of place. We
prepared together for him to die, but now he is gone. I know there is
something in store for me. There has to be. But I'm not sure what
that is. I am assuming it has to do with the foundation. I have
faith things will work out."
She is still grieving. She said she understands the
stages of grief, but "you never know what to expect. For a day you'll
be angry. For a day you'll be sad. In random order. The first
month I was fine. Then out of the blue, one minute you think 'I can deal
with this' and then without warning the whole world comes down upon you."
Until the very end, she believed that somehow her husband
would live and she said, maybe too much she wanted him to believe that,
too. "One of the last things he said to me on the Sunday morning when
he died was: 'I'm sorry.' That sticks in my mind and always will. I
yelled at him: 'Don't you ever apologize.'" WL
Donations can be made to the Curtis R. Vance Foundation, in care of Heidi
Erdmann Vance, 46 Blueberry Hill, Wethersfield, CT 06109. For more
information e-mail Heidi at email@example.com
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