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A little help from my friends

Paul Conrad/The Aspen Times
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Su Simmons was living the Aspen lifestyle until one day in the early 1990s when her life suddenly took a hard turn.Simmons, 53, was a single, working-class woman who was active in the local social scene, as well as an avid runner and hiker. Now she deals with scleroderma, a life-threatening illness that has robbed her of the ability to work or do many simple daily tasks.Nevertheless, she carries immense gratitude for the help and support of a broad circle of friends and family, who, in addition to their constant affection and friendship, have helped financially. An “anonymous” group of friends pays for her increasingly costly regimen of medications and the recent purchase of an expensive hyperbaric chamber.”She is just the light of our life,” said Lisa Amador Dimento, a teacher who manages the Alpine Bank account that is used to pay Simmons’ expenses. Dimento added that Simmons has always been “fiercely independent. She wouldn’t let us do a benefit for her.”Dimento said the benefactors, who call themselves the Donor Anonymous Group and now number about 65, bought the $18,000 hyperbaric chamber last year.”It’s just been an incredible outpouring of love and support,” she said, and there is now probably several thousand dollars in the bank account.Simmons doesn’t know the names of her other benefactors, although she said slyly, “I have some ideas.” But she knows that the hyperbaric chamber, which raises atmospheric air pressure within the chamber and “takes me down to sea level,” has increased her oxygen intake, improved blood flow to her capillaries and relieved her symptoms. It may prolong her life, as well.

She first discovered the benefits of the hyperbaric chamber when she met two local doctors, Dennis and Gianna Schannel, who gave her free treatments in their chamber in 2002 to fight off a staph infection. But the Schannels moved away, and until Simmons’ family and the group purchased a machine last year, the closest one was in Denver.”My friends have been so supportive,” she said softly.Since moving to Aspen in the mid-1970s, Simmons has worked a variety of jobs, including a number of years at The Aspen Times when it was published once a week. Many know her as one of the most unquenchably cheerful and sweet-tempered people. Those traits earned her the nickname “Sweet Sue.”Suddenly overcomeIn 1993 she began feeling tired and out of sorts, despite carrying on an active lifestyle.”I’d never been sick a day in my life,” she said. One year earlier she ran a marathon in St. George, Utah. She was training to run the race again when an immense fatigue overcame her and she had to stop running.”I just couldn’t get going,” she said. “I was very tired … I was really, really sick,” and making it to the couch after doing a little housework was a difficult chore.Her extremities became painful and started to swell, and doctors diagnosed carpal tunnel syndrome.

In 1994 she underwent surgery, which was so stressful it “just sent me into outer space with the scleroderma,” she said. “Within six months, I couldn’t walk.”When doctors diagnosed scleroderma, they said it could kill her within three to five years. But the swelling subsided. These days, the severity of the disease seems to ebb and flow. She lives with the threat of a severe recurrence.The name of the disease comes from two Greek root words – sclero, meaning hard, and derma, meaning skin – according to the Scleroderma Foundation.Over the years, she spent her entire savings after her insurance company, Travelers, canceled her policy in 1995. Her parents now help with living expenses, and the group account provides money for medicine and other expenses every month.Ravaged by diseaseSimmons’ appearance has changed dramatically in a decade and a half.The most noticeable effect is how her skin seems tightly drawn over emaciated muscles and bones on her face and arms and is tougher and more brittle than it would normally be. And sometimes she will develop open sores on her arms from infections.”It feels like my arms are burning, the bones are burning, from the inside out,” she said, although lately the pain has “lightened up” thanks to her medicine, the chamber and time.



Her hands are gnarled and shrunken, although until recently only one hand was severely affected and she was able to accomplish her daily tasks, from gardening to making clay platters and other pieces. She was selling her pieces in art shows around the U.S. and even in Japan.A recent flare-up of her illness has put at least a temporary hold to her budding career in commercial pottery. She cannot work in her garden either because small “holes” in her skin allow bacteria to invade her system. Friends now show up to weed, do a little landscaping or whatever else is needed.”I’ve thought of taking up painting,” she said brightly during an interview at her home, which was built as part of the local affordable housing program and later modified to meet her disability requirements.Although scleroderma is becoming better known, it has yet to receive the kind of attention as such diseases as multiple sclerosis. Simmons said there is at least one other local who has the disease, and perhaps two, but they tend to be reclusive because of the physical deformities they suffer and the fatigue that saps their strength.Simmons said recently that, while it is frightening to be speaking publicly about her illness, it is important to reach out to others with the same malady and encourage them to be more open and involved.”Awareness, that’s the key,” she said.Anyone interested in joining the Donor Anonymous Group can send a check to Alpine Bank account DAG No. 20213022175, or mail a check made out to DAG-FBO Su Simmons, in care of Lisa Amador Dimento, P.O. Box 969, Basalt, CO 81612.


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