Canaries in a coal mine
For people with Multiple Chemical Sensitivity,
'harmless' chemicals can be lethal
By Lisa Marshall, Camera Staff Writer
August 16, 2004
Gunda Starkey can tell you precisely when it all started.
She remembers standing in the driveway of her suburban Chicago home on April 12, 1989, when the mist from a lawn care truck working next door blew in her direction. Soon, her left side went numb, her vision grew distorted. After that, she just kept getting sicker.
For Alison Johnson, the beginning was less clear-cut. Perhaps it was after she refinished those 19 pieces of furniture or cooked the dye on the stove to make that braided rug.
"I opened up a couple of windows and figured I was covered," Johnson says. Then the migraines came, and wouldn't let up.
Scott Spiegel, a longtime environmental activist in Boulder, traces his illness back to a Florida golf course he visited when he was 15. It had recently been sprayed with pesticides and when he and his parents arrived for a post-Christmas respite, he grew violently ill.
Decades later, all three local residents say their lives have been forever changed. As sufferers of Multiple Chemical Sensitivity — a puzzling, highly controversial illness believed to be genetic in some people, triggered by acute toxic exposures in others — they say they are now ultra-sensitive to even mild, everyday chemicals like perfumes, household cleaners or lawn fertilizer.
For Starkey, that has meant moving to Nederland, buying a house free of carpet, fiberglass or gas heat, and limiting outings to places she knows are pesticide-free. For Estes Park resident Johnson, it's meant cooking from scratch and buying only organic foods.
For Spiegel, whose condition has deteriorated over the years, it means rarely leaving his small Boulder apartment. When he does, he wears a surgical mask and drives a car duct-taped at every crease to keep out potentially tainted air.
"My world has become smaller and smaller," says Spiegel, now 49. "It's kind of like being in solitary confinement in a prison where you are the only one who can see the bars."
All three have spent the years since getting sick urging homeowners and government officials to use a light hand when considering the use of chemicals, especially pesticides and herbicides. And as the threat of West Nile virus has put pesticide spraying on the table in many municipalities around the country, they've been speaking up again.
"What happened to me was so needless," says Starkey, a 48-year-old mother of two. "People need to know this kind of thing can happen."
But many in the medical community aren't so sure.
"There is controversy over whether or not this condition (MCS) exists," says Dr. Karin Pacheco, an occupational allergist with National Jewish Medical and Research Center in Denver. "There is no blood test or definitive test to diagnose it, and no good science to explain it or treat it."
Looking for answers
According to one study, published in the May issue of the American Journal of Public Health, as many as 13 percent of Americans report being hypersensitive to common chemical substances. Roughly 3 percent say they have been diagnosed with MCS. As the number of toxic chemicals in use — roughly 70,000 today according to the Environmental Working Group — increases, so do the number of people complaining of adverse reactions.
"It is just snowballing. You see so many people reacting to perfume, air fresheners, diesel smoke, etc.," says Johnson, a 65-year-old author and filmmaker who founded the Multiple Chemical Sensitivity Foundation, a support and research group.
Just what causes some people to react violently to a perfume insert in a magazine or that pungent "new car smell" is far from clear.
Pacheco says there is no doubt that a person can develop asthma after a single, high-dose exposure to a chemical. And some people have allergies to certain chemicals. But Multiple Chemical Sensitivity — a vulnerability to a broad category of chemicals resulting in an array of various symptoms — is different.
Some MCS sufferers report getting migraines when they smell perfume; others feel short of breath when they pass by a newly fertilized lawn; others feel numbness in their limbs when exposed to diesel fuel.
"It is mostly a constellation of symptoms," Pacheco says, adding that some people who believe they have MCS may have psychological problems. "In general, we don't see patients with MCS because we don't really know how to help them."
Dr. Kendall Gerdes, a medical doctor who founded Environmental Medicine Associates in Denver in 1979, thinks he can.
"Most of the symptoms that we have in terms of illness are not provable. If you say you have a stomach ache, how can I prove that? It becomes a question of whether the physician is willing to believe the patient."
At Gerdes' office, signs urge visitors to skip the after-shave or perfume the morning of their appointment and avoid wearing freshly dry-cleaned clothes. New patients are given 20 pages of paperwork to fill out and sit through a two-hour interview to try to trace what could be causing their health problems.
Many come to Gerdes as a last resort, after being turned away from other doctors who say they can't help. "The tendency is to blow it off as a figment of their imagination," he says.
He concedes there is little scientific data to suggest that one acute chemical exposure can lead to a lifetime of hypersensitivity, or to explain what causes MCS. Some believe certain people are genetically pre-disposed to produce less glutathione, a naturally occurring substance the body uses to cleanse itself of toxins. Others believe one blast of strong chemicals can somehow sensitize the pathway between the nasal cavity and the brain.
"It is still very much up for grabs as to what is going on physiologically," Gerdes says.
He uses a trial-and-error approach with patients, using glutathione injections for some, medical oxygen for others. But, he says, the most effective strategy for many is simply pinpointing what makes them sick and avoiding it.
What the patients say
For some, that is easier said than done.
In 1997, outraged by what she calls a "hatchet job," about MCS by ABC News television reporter John Stossel, Johnson began traveling the country interviewing people with MCS, making videos of them, and delivering them to congressional leaders.
The videos show ex-Marines, doctors, lawyers, and other professionals living in virtual isolation to avoid the plethora of chemicals that make them sick. Some live in tents. Others move to communities — one in California, another in Snowflake, Ariz. — designed to be as chemical-free as possible.
"This is the kind of desperation people are resorting to," Johnson says.
Last month, MCS made headlines when the family of Holy Cross football coach Dan Allen sued two contractors who had refinished the Massachusetts college's gymnasium floor. The suit alleges the work triggered the illness that ultimately killed Allen. He died May 16, 10 months after he announced he had MCS. Also this summer, 18 construction workers in Oregon sued the Army for negligence after, they say, they were exposed to sarin gas while working at a chemical plant and subsequently developed Multiple Chemical Sensitivity. One expert medical witness called their claims "hysteria."
Starkey was 33, with children ages 2 and 5, and preparing to return to graduate school to get her doctorate in psychology when her illness began. She says she learned later that she had been exposed to concentrated 2-4D, a toxic herbicide found in many commercially available lawn care products. (She says she never took legal action because she couldn't afford it).
After four years, the migraines, vision problems and fatigue subsided, and she began to rebuild her life in Colorado.
But she still insists that visitors leave off any fragrance before entering her home. She calls ahead before going out to shop or dine to be sure the store hasn't been recently cleaned or exterminated. "I try to live as normally as possible and I still find joy in life," she says.
Spiegel's illness has been more severe.
He says he has been unable to attend college, pursue a career or develop a social life, because even brief exposures — such as passing through a recently cleaned room, or sprayed field — can lay him up for days. Like a "canary in a coal mine," he says, he is the first one to notice their presence.
He was politically active in the'90s, hosting University of Colorado conferences on pesticide and herbicide alternatives, and pestering reporters and politicians to address the issue and use a light hand when using any chemicals.
But today, as his condition has worsened, he rarely leaves the confines of his sparsely decorated, concrete-floor Boulder apartment. He doesn't go to restaurants or parks. He doesn't have visitors. When he needs groceries, he often calls ahead and has the store clerk shop for him and bring his bags out to the window of his car.
"When I was in high school, I always wanted to be a psychologist. I always wanted to have a family, be married, have children. That isn't an option for me anymore."
Rocky Mountain Environmental Health Association
Chemical Sensitivity Foundation
Johnson says despite such tragic stories, she's optimistic.
The U.S. Department of Housing and Urban Development now considers MCS to be a disability under the law. The Social Security Administration will consider it on a case by case basis, and the increasing publicity about Gulf War Syndrome has led many politicians to look closer into the long-term damage chemical exposure can cause.
Chuck Stout, executive director of Boulder County Public Health, says he believes many of the MCS activists are misdirecting their energy when they criticize government agencies for considering pesticide use (in limited areas, with prior warning) to address the threat of West Nile virus. He says homeowners use commercially available chemicals indiscriminately and without warning neighbors all the time.
However, he says he has no doubt that chemical sensitivity exists.
"Thirty years ago, if you said to someone you were really sensitive to perfume, they would have looked at you like you were crazy," Johnson says. "Now you say that, and they almost immediately say 'Oh, I have a brother who has that, or I have a friend who has that.'"
When she went to her own family doctor 30 years ago with complaints of migraines and joint pain, he told her it was "just age." But when she was diagnosed with MCS, she began to change her life, giving up caffeine, switching out her oil furnace for electric heat and spending her summers in a carpet-free, remote cabin in Estes Park.
Today, she looks younger than her age and still goes on regular hikes.
"If I had believed the mindset of the doctors who said 'oh this is just life,' I would have been in real trouble," she says. "I'm healthier than almost anyone around, because I can trace most of my problem to cause and effect and do something about it."
Contact Lisa Marshall at (303) 473-1357 or firstname.lastname@example.org.
Note: This article was featured in the Grist Magazine on 8/17/04, The Chem Reaper - Multiple Chemical Sensitivities Slowly Gaining Recognition
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