A celebration of life - and love, Danville woman throws reception for
husband claimed by ALS, Burlington Free Press, May 20, 2000. by
Danville- One Sunday morning last fall, Heidi and Curtis
Vance sat beside each other in their new home and picked a date for their
wedding. That same morning, they designed Curtis' gravestone.
He had a mask over his nose to help him breathe. A
feeding tube into his stomach delivered the nourishment he could no longer
swallow. He could move only his head.
For more than a year, Curtis' nerve cells had been
dying. At 26, the formerly vigorous man was in the final stages of ALS, a
fatal illness commonly known as Lou Gehrig's Disease.
"Here we are, two 20-something-year-olds planning a
wedding and a funeral at the same time," said Heidi, now 25, thinking back
to that day. "It was absolutely surreal."
Curtis died in December, three weeks after their wedding.
Their story, however sad, is also one of inspiration.
Heidi and others talk about how much joy the couple had in their lives while
Curtis was dying. They threw parties, from summer barbecues to a
pumpkin-carving and Christmas tree-lighting celebrations.
People around them were struck by how they became complete
partners. When Curtis lost his ability to speak clearly, Heidi talked for
him. Sometimes, she could sense what he needed by looking into his hazel
"They could have just huddled together and kept out the
world, and they opened up and let the world come in," said Curtis' mother,
Linda Vance. "Everybody was in love with them. It was like a
Now she has one more party to throw.
When they were planning their wedding, Curtis said he wanted
it to be in the spring, when everything was in bloom. Heidi insisted they
do it sooner, because otherwise, it might not happen at all.
Their compromise was to hold the wedding and a low-key
reception in November, and the full-blown reception, complete with dancing, in
the spring. Curtis was there in his tuxedo for the wedding, but he didn't
survive for his party.
Tonight, Heidi is having the spring wedding reception.
The party - and the planting of an apple orchard Sunday - kicks off the
fund-raising for a charitable foundation Heidi set up in Curtis' memory.
"I see it," Heidi said, "as a celebration of
Heidi and Curtis knew each other for eight years before he
The summer Heidi was 15, she taught swimming at Joe's Pond in
West Danville, where her family has a cottage. The two met, dated and
remained good friends after Heidi went home to Connecticut.
They stayed close the following summers, and began dating
seriously while Heidi was a student at Middlebury College. Curtis was
splitting his time between working construction in Danville and staying with an
uncle in South Burlington while working at IBM.
They knew they would eventually get married, but they took
their time, determined first to find their own place in the world.
Then, in the summer of 1998, strange things started happening
to Curtis. A workaholic who loved to be outside, he was used to being
constantly on the go. Suddenly, he couldn't keep up with Heidi on bike
rides. He wanted to go to sleep at 7 p.m. One day, he walked out of
the Danville General Store and fell flat on his face.
At the time, the couple didn't know what to make of it.
Heidi laughs when she remembers how she thought she'd solved everything by
sending Curtis off to work with a jug of water and a handful of vitamins.
In December 1998, Curtis was diagnosed with ALS. From
one day to the next, he lost fundamental abilities. He couldn't press the
clutch to drive a car with a manual transmission. Then he couldn't drive
at all. Stairs were impossible. Eventually, so was standing up.
Early in 1999, the couple moved from their apartment in New
Haven to a new house in Danville. The house had been built for Curtis'
aunt and uncle, who didn't need it yet and were willing to let them stay there
indefinitely. Curtis had been part of the construction crew that built the
As the spring and summer passed, the two learned to
adapt. The small house quickly acquired a hospital bed, a wheelchair, a
hydraulic lifting device, a special bathtub and the breathing machine.
Creative thinking with the new gadgets allowed Heidi to rig up ways to care for
Curtis virtually single-handedly.
Money was tight. Curtis' insurance from IBM helped, as
did money Heidi earned from waitressing a few days a week in town. They
also had substantial support from the community, which raised $10,000 for them
Their house became a gathering place for friends and
family. Curtis spent as much time as possible outside enjoying the
mountains and their garden, cracking jokes all the while and cheering up those
who came by to cheer him.
It was their natural instinct to make as much as they could
out of every day together, Heidi said. They never thought about
withdrawing or giving up. No matter how exhausted she became, Heidi said,
there was never a single moment when she thought she would crack. Curtis'
strength fed hers.
"I knew while he was alive I could do anything,"
Heidi's younger sister, Tricia Erdmann, lived with them last
summer. She said visitors were often surprised by how happy they
"It was really just the most amazing summer," she
said. "They grasped this disease and used it in such a positive
fashion. They took a lot of people with them on that positive
If they couldn't control what the disease was doing to
Curtis physically, they were determined not to lose control of themselves
emotionally. Creating joy in the face of such sadness was one of the few
ways they could take charge of their lives, Heidi said.
While upbeat in public, Curtis sometimes lashed out in anger
and frustration when alone with Heidi. One time, she remembers saying to
him: "I can stand to watch you die, and I can stand to watch the disease
eat you," but she would not "let the disease take who we are."
Nothing could stop the sickness, though. By August,
Curtis was immobile except for his head. With his nighttime breathing mask
on, he couldn't talk, so if he woke up and needed Heidi, all he could do was
nudge her with his head. She learned to sleep on top of him.
It wasn't until October that they decided to get
married. When diagnosed, Curtis had said he did not want to marry Heidi
and then die, but he changed his mind. His illness helped them both
establish a relationship with God, Heidi said - not so much through religion as
through spirituality. A wedding was a way to stand before God, family and
friends and be united.
It also legally ensured that Heidi could take charge of
In November, Heidi walked down the aisle at a St. Johnsbury
church in her aunt's wedding dress, as Curtis sat in a special chair at the
front, surrounded by his four brothers. He smiled as much as he was able
to, letting the rest of his happiness come through his eyes.
Although the day was beautiful, for many of the 500 guests
the wedding seemed like a formality. "They were married a long time
before that," Linda Vance said.
His last morning
Heidi's hand was on Curtis' heart when she felt it stop
No one expected him to die quite so quickly. He was
doing well, especially after starting morphine a few days earlier to help ease
the sensation that he was choking. The night before he died, a Saturday,
he went to a family Christmas party.
Sunday morning was awful. Curtis slept fitfully and
kept shaking his head in his sleep. Then he stopped opening his
eyes. At 10 a.m., Heidi noticed his ears were turning purple.
His whole family soon gathered at the house. They told
Curtis as each new person arrived. Heidi noticed that his chest was
With his family around him, as his mother read aloud a letter
about her love for him, Curtis died. Heidi, who knew first, crawled on top
of him. At first she was trying to stop him from leaving. Later, she
realized it was because she wanted to just crawl inside of him and leave, too.
'A real direction'
All the energy that went in to caring for and being with
Curtis now needs somewhere to go, Heidi said.
The two worked on establishing a foundation for ALS research,
but Curtis told her to wait until he died so she could give it her full
attention. That's what she's doing. She is also working on a novel
to tell their story. Though it will be fiction, it will include details of
the trials in day-to-day life that are missing in other books on ALS, she
said. She's still waitressing in town and has been teaching and coaching
tennis, something she did before Curtis became ill.
Two years ago, she said, her life lacked a focus. She
spent months applying for jobs at every large company in the area, thinking it
was more important to make a lot of money than find something she loved.
She was a young woman struggling to figure out who she was. Now she has
many of her answers.
"I feel fortunate to be so young and have a real passion
and a real direction," she said.
This weekend will be a happy occasion, but Heidi knows it
will also be hard. Curtis had been so intent on dancing with his wife at
Often, Heidi feels Curtis' presence, especially in
dreams. One stands out in particular. She is walking in the woods
and comes into an apple orchard, something Curtis always wanted. Standing
among the trees, she feels Curtis' spirit come embrace her. They dance.
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