WE Life, Feb. '01

 

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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 West Danville.
    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?'"
    She stayed.
    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 end.
    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 larrybrvance@aol.com

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