Susan Banks couldn’t breathe. Her throat felt swollen, her forehead clammy, she had to sit down. The Spokane woman was having a reaction. Her daughter was cleaning the bathroom, spraying the tile with cleanser, mopping the floor with bleach.
“I started realizing it was the chlorine I was reacting to,” said Banks, 46.
It didn’t stop there. Hair spray, bug spray, even perfume on a fellow worshipper in church seemed to make her sick. A soak in a hot tub caused her skin to peel. Pumping gas made her nearly throw up.
For the last four years, since she was sprayed in the face with Freon in a workplace accident, Banks has been chemically sensitive.
Because she couldn’t tolerate the chemicals in everyday life, she quit work, ran through her savings and even, for a time, couldn’t make her house payments and had to move in with friends. “I just know I have to stay away from any more chemicals,” she says. “But it’s difficult to do that and function. Even going to the grocery store can set it off.”
Banks is one of 30 people who find support over the phone through the Inland Empire Chemical Sensitivity Network.
The group does not meet in person because everyone is sensitive to different things. Carpet, air conditioners, paneling and exhaust fumes can trigger symptoms from sinus pain to fever to chronic fatigue. Holding a job outside the home is nearly out of the question.
Even going to the doctor may not help because leading physician groups say multiple chemical sensitivity does not exist.
“MCS theory promotes an irrational fear of all chemicals around us,” states the American Council on Science and Health. “This kind of junk science makes it possible to convince people that carpets are potentially life-threatening products or that minute amounts of chemicals in water are destroying their health.”
For Banks and others, such statements add insult to injury. No one believed in sick building syndrome until 200 Legionnaires staying in a Philadelphia hotel became violently ill, they say. If low levels of chemicals are as dangerous as sufferers believe, industry and government regulators could be sued for millions.
“MCS is not politically or economically correct,” said Dawn Brozovsky, whose chemical sensitivity even forced her out of a job in a health food store. “There’s a lot of money behind proving we are crazy.”
Reasons for dispute
Scientists and doctors agree that many people are very sensitive to noxious chemicals and common foods and can become sick as a result. Anyone who’s ever gotten a headache from fresh paint or wheezed over a magazine’s fragrance samples can identify with that.
The casualties of Agent Orange and Gulf War syndrome were people overloaded by chemical pollutants. Eight states and 10 federal agencies recognize chemical sensitivity as a disability.
What is disputed about multiple chemical sensitivity is the claim that people can develop a general hypersensitivity to chemicals and that almost everything around them can be life threatening or allergy causing.
Michael Castleman, writing in Sierra Magazine in 1993, summarized why:
There is no consistent pattern of symptoms to MCS, which can range from congestion to clumsiness.
There is also no consistent way to test for it, no known mechanism of how the syndrome works.
And in some studies, sufferers had much higher rates of psychological problems than the general population.
Proponents counter that depression and anxiety may be side effects of having to live such isolated, limited lives.
They also argue that while symptoms may seem vague and varied, each person can usually identify specific exposures or chronic exposures that made them sick.
Banks knows exactly when she became ill.
The August 1991 night her supervisor at a Spokane hotel asked her to look at a freezer in which a Freon tube had been punctured during defrosting. Freon is a refrigerant composed of fluorine, carbon and chlorine.
When the supervisor opened the door, a whitish-blue mist sprayed Banks in the face. She flushed her face and eyes, but didn’t shower or change her clothes. By the end of her shift as an assistant banquet manager, she felt drunk, staggering and slurring her words. She developed skin rashes, a swollen throat and shortness of breath.
“I was always a very healthy person before all of this happened,” she said. “I rarely got sick.”
But now, she felt sick all the time, and in connection with products she’d always used.
“In many ways, I’m fortunate. I had such a large exposure that I could feel when it changed and how it changed and so many people don’t.”
Difficult to diagnose
Looking back 20 years, Dawn Brozovsky believes that bouts of mono-like illness that had her “always whining that I didn’t feel good” were actually caused by her mobile home and handling her former husband’s oil-stained clothing (he was a mechanic).
But it was not until 1992 that she believes years of low-level exposure to chemicals triggered a dramatic reaction. After seven Sundays of attending a newly carpeted Spokane church, she felt dizzy, with muscle aches so deep the massage therapist thought she had tendonitis. She suffered crying jags “as though I’d lost my best friend.”
Brozovsky asked the church for carpet samples and sent them to Anderson Laboratories Inc., a Massachusetts firm that studies indoor air pollution. The lab reported mice exposed to the carpet suffered effects ranging from mild sensory to severe neurologic damage.
Other churchgoers did not seem affected and the church did not remove the carpet. Brozovsky changed churches - and her lifestyle.
At 39, she lives in a house with bare floors and furniture covered with cotton cloths. A large oxygen tank and air filter sit in her living room. Fragrance-free soaps and shampoo, natural cleansers such as vinegar and baking soda, and organically grown produce sit on her shelves.
Living on Social Security Disability, she has gradually improved by seeing a naturopath, taking health food supplements and avoiding everything from the downtown Spokane library (new paint and carpet) to lacquered furniture.
Researchers Nicholas Ashford and Claudia Miller say such alternatives are understandable since about the only treatment available is avoiding chemical exposure and changing diets. But it contributes to the skepticism about MCS.
“These practices appear cultist and members of this supposed cult have been labeled in print as true believers and their physicians as gurus or social scientists,” they wrote in their book, “Chemical Exposures: Low Levels and High Stakes.”
Brozovsky said many sufferers are examined for mental illness. They have trouble finding medical care because most doctors aren’t highly trained in toxicity. And, identifying the syndrome is difficult.
“You have to rule out every other disease on the planet to declare MCS,” said Spokane physician Paula Lantsberger. “You have to have a huge mega work-up before you can arrive at that diagnosis. And (for the patient) it takes a lot of patience and tolerance being put through that kind of testing.”
Lantsberger is one of four physicians at Occupational Medicine Associates, which also researches and treats chemical illnesses for the state. Keeping abreast of research and breakthroughs nationwide has convinced her more research on chemical sensitivity is needed.
“It’s still the big ‘I don’t know,”’ she said, “We don’t know what caused it, we don’t know what to do for it, we don’t know how long it’s going to last.”
Are chemicals making more people sicker or are more people just reporting it? Are the chemically sensitive the “canaries in the mine” they claim to be?
Ashford and Miller say the rise in health complaints since the 1970s accompanies a rise in the number of synthetics and chemicals in use and energy-efficiency in homes and offices. Americans also spend more hours inside tightly constructed buildings than previous generations.
While research continues, people who believe they are ill say there is almost nowhere to go for relief:
Not outside. Wood smoke and car-exhaust fumes. Pesticide and herbicide companies must notify those who register with the Department of Agriculture when they are spraying next door, but there’s always the neighbor using weed killer. Grass-burning season can drive Susan Banks from town, and even a neighbor’s house paint forces her to don a heavy-duty gas mask a la the Human Fly.
“I used to be quite embarrassed,” she said. “When I met my new neighbors, it was all they could do to keep from laughing. But my health is more important than a few tee-hees.”
No relief inside, either. Susan Wall, 39, postpones heating her Spokane home because she believes her natural gas furnace produces fumes that make her ill.
“It’s hard to decide which is worse, freezing to death or feeling icky,” said Wall, who is being tested for sensitivities after exposure to a common pesticide. “So I go 50-50.”
No relief with friends. Isolation is practically a symptom as even family members take reactions personally, and gatherings without tobacco smoke, perfume, car fumes and carpet are rare.
“You pretty much need a relationship with a person who likes camping and social events in parks,” Wall says.
Even then, you have to know when the park was last sprayed.
“It’s like invisible arrows being shot at you from all over,” Brozovsky said. “They hurt, but you can’t do anything about them.”
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