by Miles Blumhardt
Caryl Schonbrun lives in a strange little world with a hypo-allergenic dog named Bosco, an infrared sauna and outings nearly restricted to Whole Foods stores.
It's the bubble life of one who suffers from multiple chemical sensitivity, a mysterious syndrome not totally recognized by the medical world but felt by millions of Americans, many of whom might not know they have it.
"I'm aware that there are some people who laugh at it, but unless you go through it, you don't understand how debilitating it can be,'' Schonbrun said from the safety of her southeast Fort Collins home built especially for her condition.
"I went from being a very social person to living a life of isolation because it's hard to accommodate me."
Multiple chemical sensitivity was first labeled an illness in 1952. It is a condition where people (women ages 30 to 50 make up 90 percent of sufferers) become overly sensitive to common everyday chemicals, including perfumes, laundry detergent, household cleaners, gas exhaust, plastics and pesticides.
The sensitivity causes a barrage of ailments, including difficulty breathing, sleeping and concentrating, migraines, hives, nausea and fatigue.
Some studies indicate sufferers experienced a significant exposure to chemicals during childhood. The illness is closely related to chronic fatigue syndrome and fibromyalgia syndrome. It is difficult to detect via tests, and there is no known cure, with avoidance being the best option for sufferers.
Schonbrun, who worked as an operating room nurse until going on disability because of the illness, was diagnosed with the syndrome five years ago while living in San Diego. She and her husband, Bob, moved from San Diego to Tucson, where they thought the desert air would help. It didn’t. They moved to Fort Collins, but still the condition plagued Schonbrun. The couple recently moved into a custom home built specifically to alleviate her condition.
The home built by Rick Newman of Fort Collins-based Natural Build includes extraordinary features to alleviate chemicals in the house. Those features range from a metal roof with no tar paper to a basement infrared sauna that detoxifies Schonbrun.
The house includes no-chemical concrete, zero-VOC paint, water-based stain, hypo-allergenic drywall mud, metal framing, all hardwood floors, a whole-house water filter and all electric appliances.
“There really is no perfect place to live with this; I really should be living in the mountains,’’ Schonbrun said. “But my daughter lives here and my parents live here, and I want to be close to them.’’
Newman estimated the house was 98 percent chemical-free, but for the most part, the painstaking effort to build what Schonbrun calls a “safehouse’’ looks little different than any other house inside or out.
It was the first such house Newman built and cost about 15 percent more to build than traditional custom homes.
“We wanted to build a house that when you walked inside it doesn’t look like a sterile house,’’ said Newman, who added that it took many hours of research on how to build the house.
Outside the bubble
While Schonbrun feels well inside the house, she still has trouble dealing with life outside the 4,000-square-foot home.
She can have few visitors, unless they come wearing no perfume, although even cologne-free visitors can carry contaminants on their clothes. She says the only stores she can visit are Whole Foods stores. Occasionally, she and Bob dine out and ride bikes on the trail, but she wears a mask to keep irritants at bay.
“I get some funny looks when I go into a bank,’’ Schonbrun said. “When I see other people wearing a mask, I feel a kinship to them. I know about five or six other people in Fort Collins with MCS.’’
Bob, 50, and Jill, 20, who lives in a condo near her parents, admitted life has not been easy for them, either.
“It’s difficult, it’s restrictive, it’s frustrating and there is a degree of resentment,’’ said Bob, who has been married to Caryl for 24 years. “It’s like having an infirm spouse or one with a chronic illness, like cancer, but thankfully, it’s not cancer. But you learn to accept it and make the best of the situation.’’
Jill said as a teen she couldn’t wear perfume to school like most of the girls trying to attract boys.
After she left the house in the morning, she would put perfume on, but then would get busted by her mother when she got home.
“I used to get really mad because I thought it was psychological,’’ said Jill, whose boyfriend is especially respectful of Schonbrun’s illness. “My friends couldn’t come over, so it was really hard until later when I realized what she was going through.’’
According to some studies, about half of multiple chemical sensitivity patients meet the criteria of having depressive and anxiety disorders, but Schonbrun said she has neither. She has pursued homeopathic treatments, vitamin IVs, avoidance and her safehouse.
Though those actions have helped her cope with the disease, she is resigned to the fact that she will grow old with the illness.
“I’m somewhat stuck but feel safe in this safe haven,’’ said Schonbrun, 52. “I don’t think I’ll have a normal life again. There’s no cure out there, just trying to live with a positive outlook.’’