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'If someone had told me that in 15 years I would be like this. . . "


READ The New Refugees


READ "Consumer Products, VOCs, Ozone and Smog" from The New Reactor



People with MCS who have few resources
end up as housing refugees

Safe Houses:
Only for the affluent?

By Barbara Eaton

"You should see my beautiful apartment," says Lynn Nelson. "I really wish I could live in it."

Nelson has what is called "multiple chemical sensitivity," frequently shortened to MCS. She sleeps in her car, even though she has a government-subsidized apartment. "When I went on disability for MCS, I feared I would be sleeping in the streets. I was thrilled to find out that I could get this kind of housing.

photo: Kelly S.

This and other photos from "The Dispossessed" by Rhonda Zwillinger.
View photos

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"Yet, here I am -- in the street or begging friends to let me sleep in their driveways, or sleeping behind my church."

Nelson discovered what thousands of others with severe MCS have learned: that their conjoined and rented living spaces are impossible to keep free of the plethora of volatile organic compounds emitted by neighbors' perfumes, cigarette smoke, pesticides, laundry products, or that sift in from renovations in the building and from routine lawn maintenance. When people with MCS move in, they almost always find that residues of perfume and pesticides have saturated the porous wood surfaces, carpets and carpet padding -- residues in amounts high enough to sicken them. And they are very difficult to remove.

"My doorway opens onto common a hallway with 70 other apartments," says Nelson. "All the air fresheners and cleaning products my neighbors use leak into this space -- and they waft into my apartment.

When people with MCS move in, they almost always find that residues of perfume and pesticides have saturated the porous wood surfaces, carpets and carpet padding

"Every time the management paints this hall or steam-cleans the carpet, I have to vacate my apartment." She can't return for days -- or weeks -- she says. When the perfume from the carpet shampoo and the paint fumes clear, she has to steam clean everything in her own apartment with plain hot water to remove the air-borne molecules from the paints and the cleaning chemicals that have accumulated in the meantime.

"Gail" thought she had prepared responsibly for her retirement. She owned her own condominium. Then she acquired severe MCS.

Her worst reactions struck when lawn chemicals were applied around the condo complex, or the complex sprayed pesticides for bees, putting her "flat on her back," she says, for almost two weeks with persistent sinus infections. Cognitive and memory functions would become significantly impaired as well, she says. And just about the time she would begin to return to a modest level of health, able to resume appointments and cook for herself, the lawn chemicals would be applied again.

Although Gail was successful in achieving an agreement from her condominium association that included notification of pesticide application 48 hours in advance, and that her specific unit would not be treated, this came only after a long battle, involving lawyers and formal hearings. Even at that, the accommodations worked out on paper were not implemented half of the time.

Gail eventually gave up and sold her condominium; at the age of 70 having to relocate to the other side of the large city where she lives, away from a longstanding support network of friends and family. She now rents a home previously inhabited by another woman with MCS.

"Brenda" sold her single-family home in the city when she applied for disability. She was afraid that she might be without income for a long time, since applying for disability benefits based on a diagnosis of MCS is usually denied the first time around (and often on appeal as well) She had already depleted most of her savings trying to find medical treatment that would improve her condition enough to let her keep her professional job. "I bought a duplex in a rural area," she said, "hoping the rental income would help with my mortgage payment, and thinking that I might benefit by getting into an area with cleaner air."

Little did she know how much her tenants' perfume and air fresheners would leak through the walls. "People think I'm crazy when I tell them I know all of these vaporous things come from under the baseboards and through the wall cavities and from the electrical outlets. But they do. I can smell them plain as day!"

Experts in air quality confirm what Brenda is saying. According to Department of Environmental Health at the University of Washington,  particulate matter such as pollen and wood-smoke travel into homes through the cracks around windows and door. Yet gas and vapor molecules are up to one-thousand times smaller than particulate pollutants. They can easily pass into the tiniest of cracks and fill entire wall cavities. Unlike pollen or most particulate allergens, perfume chemicals are designed to volatilize at high levels and to last for long periods of time. Manufacturers of many perfumed products admit that they have been increasing the fragrance strength in many products. A currently-running television spot for Gain Laundry Detergent brags that "the freshness now lasts for two weeks." The ability of these highly volatile organic compounds to push through cracks and saturate porous building materials is a real problem. Even if only small amounts of the substances leak through, when the infiltration goes on continuously, it begins to build up to significant levels.

"A lifesaver for me, " says Brenda, "was builder's foil and foil tape." Luckily for her, Brenda is handy with tools and had the financial means to rehab the building.

She removed baseboards and door trim, covering the open areas where drywall ended with an airtight seal of foil tape. She went into her attic and secured builder's foil with caulk and foil tape over the wall between the neighboring apartment and her own. She removed kitchen cabinets and bath cabinets on the walls that connect her unit with her tenants', and completely sealed the open places and gaps where wires and pipes go into the wall. She slept in her car and lived outdoors while she was doing the rehab, she says -- the perfumes and pesticides from the opened wall cavities made her so ill that it slowed the pace of her work.

Builder's foil and foil tape have been a lifesaver.

Major retrofitting and exhaustive cleaning are usually needed anytime a person with MCS relocates. Surfaces need to be steamed and scrubbed repeatedly with things like lemon juice, baking soda, and vinegar to help extract the molecules that are emitted from the volatile organic compounds, called VOCs, that cause the disabling symptoms. Even the insides of cabinets and closets are problematic. Ozone air purifiers are often highly effective at extracting problem contaminants that are embedded in porous concrete block, carpet, or wood surfaces. But ozone is a highly toxic gas and a respiratory irritant itself, so tenants must vacate the premises during and after an ozone treatment -- sometimes for days or weeks.

Most persons with MCS remove all carpets and carpet pads, then seal the bare wood, since it has absorbed years of latex molecules from carpet pads and other volatile substances from carpet cleaning chemicals. Then a hard surface floor will be installed. Some MCSers can tolerate older carpeting and carpet padding if it hasn't been cleaned with a great deal of perfumed products.

Soft vinyl floors often emit too much PVC (polyvinyl chloride) to be tolerated, no matter how old they are. Harder, more expensive vinyl has to be installed. The safest solution for those sensitive to plastic and vinyl is ceramic tile or other natural materials.

Cabinets made from pressed wood leach formaldehyde and other glue components. Sometimes these can be sealed with varnishes that cure quickly. Yet sometimes they also need to be replaced. Many MCSers who build install all-metal cabinetry.

Combustion fumes are also a trigger for almost everyone with MCS. All-electric houses with radiant heating provide the best option. Homes with propane and oil furnaces present completely impossible situations. Still others with MCS develop sensitivities to electromagnetic radiation, creating yet another list of accommodation problems.

Mycotoxins emitted as indoor molds break down mean that mold is another ongoing environmental concern for people with MCS. Luckily, mainstream medicine and housing authorities are beginning to recognize that everyone is at risk for mold-related illness, thus landlords and builders are managing mold problems more effectively.

Substances that trigger severe reactions in one person with MCS may not disable another MCSer. Some are more sensitive to pesticide, others more sensitive to the solvents in perfumes and paints. Some are felled by chlorine in the water, others can tolerate normal city water. This compounds the problem for MCSers who would like to help each other by sharing an apartment or house.

Brenda has witnessed a slow and steady improvement in her health since completing her airtight sealing of walls. She's also secured some accommodation from her tenants, who no longer use solvent-based air-fresheners and highly perfumed laundry products. Her chronic fatigue and infections have largely abated. She is now able to work nearly fulltime, although she must work from home.

"I don't see how a person with limited means who must rent can live any kind of decent life with MCS, she says. "When you rent, you can't take the house apart the way I did. Apartment dwellers are stuck breathing what their neighbors put into the air."

'Neurotic,' I would have said

If someone had explained the details of their multiple chemical sensitivities to me 15 years ago, I, would have simply considered them neurotic. If someone had told me they'd have to have a whole-house reverse-osmosis water purifier to avoid being felled by the minute amounts of chlorine volatilizing into the air and absorbed through the skin while showering, I'd have said: "no way!"

If someone had told me that they had to cover the insides of every closet in their home with aluminum foil and tape it airtight, lest the residual mothball fumes (imperceptible to me) from a previous occupant cause them chronic pain, I'd have said "yeah, right!"

If someone had told me that in 15 years I would find myself washing my bedding daily, rinsing each load with vinegar because the low level of air-borne chemicals that were deposited on them during the day were enough to prevent me from sleeping, I likely would have thought, "I'd rather be dead."

If they had warned me that I'd be washing my hair three times a day to remove perfume I picked up in heavily perfumed public spaces, I think I'd have laughed.

Yet those examples offer a small glimpse of the many bizarre hassles I deal with daily.

Much of the public simply ignores MCS -- just as the public seems to ignore a host of other more accepted disorders that also appear to be on the increase -- attention deficit disorder, Alzheimer's, autism, fibromyalgia, multiple sclerosis, Parkinson's. The general attitude of disbelief and puzzlement exhibited by the uninitiated public, agencies that award disability benefits and slow-to-read-the-recent-research medical practitioners is also largely a result of the extreme strangeness of our malady.

All the while, folks who so far remain healthy continue to use chemical perfumes, pesticides, herbicides, potpourri and scented candles ad nauseam.

-- B. Eaton

Barbara Eaton left her professional teaching position in 1996 due to MCS, and now works on MCS issues. She is the president of a regional chapter of The National Association of the Physically Handicapped.

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