– MCS: The New Homeless

 

No Safe Haven

  

People With Multiple Chemical Sensitivity Are Becoming the New Homeless

Though it’s only recently begun to make headlines, multiple chemical sensitivity (MCS) is not new: People have been reporting the symptoms of it on an increasing arc for the last 50 years, as our society has become more and more synthetic. Between 1940 and 1980, the production of synthetic organic chemicals increased from less than 10 billion pounds per year to more than 350 billion. In some ways, MCS is an allergy to modern life–a physical reaction to the common chemicals, ranging from detergents, pesticides, solvents and perfumes to foods and pharmaceuticals, that permeate our everyday existence. Less than one percent of the 1,000 new chemicals added each year have been tested for toxicity. 

No longer rare, MCS affects as much as 30 percent of Americans, with symptoms that range from the mild (headaches, fatigue) to the severe (chest pains, depression, shortness of breath). Despite its growing ubiquity, however, MCS is rarely taken seriously. As Rachel’s Environment and Health Weekly explains it, “Because MCS does not fit any of the three currently-accepted mechanisms of disease–infectious, immune system, or cancer–traditional medicine has not known how to explain MCS, and so has often labeled it ‘psychogenic’–originating in the patient’s mind. This has left MCS sufferers in limbo. Told they are crazy, or imagining their disease, or making it up, they find themselves passed from physician to physician without any satisfactory answers and often without relief from their very real distress.”

This photo essay is part of a long-term project by Rhonda Zwillinger, an artist who is herself an MCS sufferer. The story she tells is her story, too. “In 1991, at the age of 41, I developed a crippling case of MCS that forced me to leave my son, my career and my home in New York City,” Zwillinger says.

“I decided that I had to live in a place that had clean air, eat organically grown foods and wear clothes made from natural fibers,” she continues. “I saw an ad in one of the many MCS newsletters for a MCS rental house in Tucson, Arizona. In 1993, I moved there, because the Southwest had a reputation as a ‘healing haven.’

“My book, The Dispossessed: Living With Multiple Chemical Sensitivities, is a compilation of photos and personal stories of people who have relocated to the Southwest because of MCS. Some 80 percent of MCS sufferers in the region are basically homeless, living nomadic lives in stripped-down mobile homes, old RVs, used cars, made-to-order tents, lean-tos and shelters. Unable to interact with society, many lose their jobs, homes, careers, marriages, families and friends, or even commit suicide, as a result of the profound physical pain and isolation. Often, the only link to the outside world is the telephone.

“Throughout the Southwest, a few MCS communities have informally organized. An MCS sufferer finds an environmentally ’safe’ area, buys a piece of land and puts down a mobile home or buys a house. Others then come to stay short- or long-term, bringing their own shelters. These communities are always in flux, as MCS is an illness of progressive degradation that affects multiple organ systems. A resident who develops allergies to the surrounding vegetation, or is affected by encroaching development, again becomes nomadic, looking for a more tolerable location.

“In the fall of 1994, I bought five acres of land in an isolated area of northern Arizona and built a 45-square-foot environmentally ’safe’ house to my specifications. I chose more land and a smaller house for protection from neighbors’ laundry smells, wood-burning stoves, barbecues, pesticides and automotive fumes. But five acres is not enough protection. Often I have to close myself inside my house and turn on the air purifier until it is safe for me to return outside.”

Ann B. (born 1934), Tucson, Arizona:
“I am a wife, mother of three, and grandmother of eight. I worked in a bank in Tennessee for over 20 years. I got poisoned by the toluene in new money, by the car fumes I inhaled as a window teller, by new building chemicals from several bank renovations, and by the pesticides that were routinely sprayed inside the building. I have developed severe food allergies, and cannot tolerate pesticides in foods. I am literally starving to death. My husband renovated this Airstream for me because I can no longer tolerate the family home. He moves me from place to place to try to find an area that I can tolerate. It is hard for my husband and I to be separated after 41 years of marriage. He cannot retire because we need the money for ‘out-of-pocket’ medical costs and for our travel expenses.”

Bonnie B. (born 1956) and Danielle (born 1994), Sedona, Arizona:
“My husband, Rabbi Billy, and our two daughters, Margie and Danielle, are pictured here on our bed placed in the kitchen of our rental house. I became ill from renovation materials when we lived in Vermont. We have moved from house to house around Arizona since Danielle was six months old, as we cannot find a house I can tolerate. I slept in the kitchen or outside when weather permitted until the neighbors in the cul-de-sac began to spray pesticides. The house became contaminated, as did all our possessions. Now Danielle (who is also chemically sensitive) and I sleep in our car, which we park at the end of the street.

“My husband has placed us under the traditional tallis, a flimsy shelter which symbolizes that home is not blocks of mortar, walls or beams, but the spiritual strength, faith and closeness of a couple that makes a home a home. Billy recites from the Torah: ‘Spread over us the shelter of your peace.’”

BONNIE B./DANIELLE
“I sleep in our car, which we park
at the end of the street.”  
CATHERINE R.
“I lived a privileged life
before I became ill.” 

Catherine R. (born 1947), RN, Dewey, Arizona:
“I lived a privileged life before becoming ill with Multiple Chemical Sensitivity. My father was a three-star general, and as a child I lived in wonderful, interesting places. I became a nurse and supported my husband through medical school. When he became successful we started our family and had three sons. I drove a Mercedes and lived in a big, expensive new house. In 1981, I became severely ill with MCS from exposure to DDT sprayed on the army base when I was a child, new furniture and the materials used in my home, capped teeth and breast implants. I moved to Arizona trying to find a place with cleaner air than Denver, Colorado, where I had been living. After looking at almost 200 trailers, I bought this steel utility trailer with a camper shell to have shelter from the summer monsoons and winter snows. Although I do not see my three sons, I talk to them regularly on the telephone.” 

Christie B. (born 1967), John B., Paulden, Arizona:
“My husband, John, and I are homeless and are sleeping in our van, which is parked on five acres belonging to another MCS sufferer. We use the metal shed as a kitchen, a bathroom (portable potty), an office, and have fashioned a makeshift shower outdoors. My husband, a physical therapist, spends his days off renovating an old RV so we can have a place to live that is insulated from the elements and has indoor plumbing. It will have porcelain on aluminum walls, floor and ceilings, which I can tolerate. John works long hours on his job to pay for the extra costs that my illness incurs-like expensive medical treatments, organic foods, special vitamins, organic cotton bedding and clothing, a special vacuum cleaner and expensive room air purifiers. We had to flee Chapel Hill, North Carolina because the mold and MtBE fuels made me desperately ill.”

Karen T. (born 1957), Dewey, Arizona:
“I was born in Idaho, the middle child of three. I grew up on a farm and had no health problems until my late teens, when I started to experience allergic reactions to everyday chemicals and to foods. I attended the University of Oregon, but was too ill from the indoor building chemicals to continue. For a time, I worked as a secretary-bookkeeper and did fine until the office was remodeled with new carpets and furniture. Recently, I left Oregon and my husband of 13 years to come to Arizona to try to heal. I wanted to get away from the wood and grass burnings, the lumber mills, mold and my cedar house, all of which aggravated my chemical sensitivities and caused me to weigh just 80 pounds at five-foot seven. I now live in a porcelain trailer and am in the process of divorcing my husband, who refused to leave Oregon to be with me. He made me feel ashamed of the severity of my illness. I was afraid of being thought weird, so I hid my illness from family and friends.”

Karen A. (born 1949), Nat and Sam (born 1974), Tucson, Arizona:
“We have lived in the van pictured here for over two years. As a child, I became sick from mercury amalgam fillings, from chlorinated water, from cortisone prescribed for rashes, and from pesticide exposures in my childhood home. As an adolescent, I felt depressed and nervous and had to quit school. When my twins, Nat and Sam, were babies, they developed food allergies and asthma and could only eat organic foods. By the end of each school year, the boys got sick and worn down by the pesticides and cleaning chemicals used in their school. They finally had to quit high school a few credits short of graduating. We left northern California for a less moldy, drier climate. We would love to settle down, as moving around is hectic and it is heartbreaking to leave people behind. We want to rent a ’safe’ place to live, but there is no ’safe’ housing for those disabled with MCS.”

Nina Z. (born 1949), Santa Fe, New Mexico:
“I have been living in my van for three years. Homelessness is expensive. There is no place to cook and no place to rest (which has made me sicker). I have become more reactive, and am in physical pain most of the time. I can’t go to places I used to be able to go: doctor’s offices, friends’ houses and psychology conferences.

“I earned a substantial income before becoming sick. I lived in northern California, where I earned a master’s degree in psychology. I worked 3,000 hours to qualify for a ‘Marriage, Family and Child Counseling’ license. I worked simultaneously at a psychiatric hospital and as a medical social worker with terminally ill patients who required kidney dialysis. While working with the dialysis patients, I was exposed to the chemicals that disinfect the dialysis machines. My office was next to a toxic chemical holding tank for glacial acetic acid, sodium meta-bisulfite and formaldehyde. I began to feel sleepy, irritable, disoriented, had eye infections, sore throats, bronchitis, suffered from insomnia and had severe pains in my hands and feet. In six months I became totally non-functional. As a trained psychologist, I viewed my symptoms as psychological. Luckily, I found a doctor who told me that my condition was not emotional. I had been chemically poisoned. It has become my passion to work to create a homeless ’shelter’ accessible to those with MCS.”

Patrice K. (born 1953), RN, Cedar Crest, New Mexico:
“I worked as a registered nurse at a treatment center for chemically-dependent teenagers in Minnesota. The hospital was remodeled with new carpeting, wallpaper and paint during the winter when it was closed up tight. The windows were painted shut and maintenance materials were stored there. Each day I felt sicker. I developed digestive problems, fatigue, dizziness, muscle weakness and joint stiffness. My left arm and the left side of my face became numb–I had a heart attack at 28, though I never had any history of heart disease. After my heart attack, I went to a clinic in Mexico to recuperate, but I had already been severely chemically injured with MCS. I could no longer think well, I was unable to read, I suffered from irregular heartbeat and my throat constricted, which made it difficult to breathe. After my stay at the clinic, I returned to Minnesota but could no longer tolerate being indoors, especially in the winter when the heating systems were on. I spent a couple of winters freezing on friends’ screened-in porches. When I over-stayed my welcome, I rented an apartment so I could have a bathroom to use and sleep in my tent outside. This was the beginning of my nomadic life. I have traveled south to live near the beaches until springtime, and then traveled up the east coast as far as Maine. I still live in my tent, which is installed in the backyard of my rented house.”

Randy H. (born 1950), Prescott, Arizona:
“I live in my car and sleep in the front seat. I have traveled around Arizona, Oregon, New Mexico, Colorado and Texas, trying to find ’safe’ housing. I used to be a bus driver in Orange County, California. The buses I drove had faulty ventilation systems that sucked the bus exhaust back inside. The interior of the buses were routinely sprayed with a kerosene-based pesticide which, when outlawed, was replaced by Dursban. I began to suffer with digestive problems, heart palpitations, respiratory-sinus problems and numbness of the face and extremities. I organized a petition of over 400 signatures of my co-workers to protest the unsafe working conditions. The Los Angeles Times covered the story, as did the local TV station. Approximately five to 10 percent of the bus drivers were chemically injured with MCS. I also think some passengers were made sick by the chemicals used on the buses.”

Tom P. (born 1950), Tucson, Arizona:
“I grew up in the suburbs of Detroit. I have a master’s in counseling and worked as a counselor in public schools and in private industry. I dabbled in real estate and was part-owner of a bar-restaurant in Denver. The real-estate office where I worked was connected to a mall. The smells from new clothing, especially formaldehyde, circulated throughout the office and started to bother me. I got weaker and more sensitive. For many months I had to sleep in the back of my truck because I could not tolerate being indoors. I finally found this Airstream, but I cannot find a permanent ’safe’ place to park it.”

TOM P.
“I could not tolerate
being indoors.” 

MARY S./KITT.
“It was the breast implants
that were making me sick.”

Mary S. (born 1957) and baby Kitt (born 1991), Tucson, Arizona:
“I grew up on a ranch in Tucson. My hobby used to be body building. I decided to have silicone breast implants, but shortly afterwards began to feel sick and weak. The many doctors I visited told me there was no scientific evidence to indicate that it was the breast implants that were making me sick, and told me to go ahead and nurse my baby. Baby Kitt vomited after he was nursed and was sick all the time. By the time I finally convinced a doctor to remove the implants, Kitt and I were severely injured with MCS and had to move to the desert, living in this homemade tent. I cannot tolerate building materials, electricity or pesticides. The desert where Baby Kitt and I live will be leveled for a golf course, making us homeless.”

 

RHONDA ZWILLINGER’s photo exhibit, “The Dispossessed,” was displayed last year at The Phoenix Gallery in New York City. The book, with interviews by the author, is available for $18 postpaid from: The Dispossessed Project, PO Box 402, Paulden, AZ 86334-0402.

From: http://www.emagazine.com/view/?1003

 

Monday, March 12, 2007

Who Is That Bubble Girl?

http://peggymunson.blogspot.com/2007/03/i-have-to-live-life-immaculately-free.html

I have to live a life immaculately free of chemicals: a bubble life. And by chemicals, I mean, the crap that has infiltrated almost every known product since WWII: the fragrance in other people’s shampoo, the Tide and Bounce embedded in clothes, the formaldehyde in cabinet wood, the adhesive holding the imaginary world in place. I’m talking about modernity, and post-modernity, and air fresheners hanging from rearview mirrors; cigarette smoke and wood smoke. In the Tarot deck of access, I’m talking about: The World.

That’s why I live a life of virtual exile, down a dirt road far, far away.

After contracting chronic fatigue immune dysfunction syndrome/myalgic encephalopathy (CFIDS/ME) at age 23 – a gripping, crushing, suffocating illness that seized me by the ankles and dragged me under – I thought it could not get any worse.

In the year before, I had been riding my bike between cornfields in Ohio, miles uncoiling behind me. I had prodrome symptoms: a chronic deep cough that wouldn’t go away, a sore throat and difficulty swallowing. But suddenly, I was seized by odd bouts of vertigo. Just as suddenly, I came down with a surreal, flu-like illness. I thought I would die within weeks. “Flu-like” didn’t begin to characterize the strange illness that had overtaken my life. With a horror movie multiplex replacing my internal organs, I could barely walk or think or function.

I was about to embark on a cross-country move to San Francisco, and state-by-state grew more direly ill. By the time I arrived in the Bay Area, I could barely walk up a flight of stairs. I went to a feminist health center and was chastised about how long it had been since my last pap smear. I didn’t have a language for the fact that, in every cell of my body, I was crushed beyond recognition. There wasn’t, and still isn’t, a way to talk about the debilitating symptoms from neurologic to cardiac dysfunction that stole my life.

Over time, I lost everything: my ability to think clearly, sit upright for more than a short period, work, go to social events, continue my education, travel. I became almost entirely bedridden. Most of my last fifteen years have been characterized by this reality. I learn about social commerce from reality TV.

Despite the inundation of all of those crap TV commercial breaks, nothing prepared me for Multiple Chemical Sensitivity (MCS), a disease afflicting 15-33 percent of Americans to greater and lesser degrees (in my case: greater). MCS gave the postmodern notion of “otherness” Biblical proportions.

The environment is an abstraction to most people: global warming, lawn chemicals, Al Gore. To me, the environment is people, and the products they put on their skin. “Dude! Imagine if you could die from deodorant!” said this stoner that my friend hired to help me move to the woods. Yeah, dude, imagine.

If people use products other than natural, fragrance free shampoo, soap, deodorant, detergent, makeup, and lotion from a health food store, they prohibit me from going to the places they go. They literally bar my entry to doctors’ offices, stores, parties, public transportation, workplaces, courtrooms, universities and social clubs. If the products are particularly noxious, like Off bug spray or fabric softener sheets, they prohibit me from going to outdoor spaces. I live on five acres: they get the world.

This isn’t some kind of puritanical restraint on my part: an exposure to someone’s toxic crap can literally cause excruciating physical symptoms for weeks or months, injure me further or even kill me.

This is our pedestrian war, the one most people may not realize we’re fighting, because of what Rachel Carson calls “the harmless aspect of the familiar.” The petroleum wars in the Middle East are not just about transportation: 80-90 percent of the ingredients in synthetic fragrance (which is in nearly every body care and cleaning product) are derived from petroleum. Scented candles may give someone “serenity,” but they have nothing to do with peace.

The synthetic ingredients in soap, shampoo, deodorant, detergent, and cleaning products are in fact a direct result of wartime chemical industry activity. In the early 1900s, America lagged fifty years behind Germany in chemical production, and most American chemical engineering professors had been trained in German Universities. Once WWII successfully obliterated foreign competition, and particularly Hitler’s enormous chemical complex, IG Farben, the American chemical industry achieved rapid world domination, with petroleum and petroleum byproducts as its cornerstone. War chemicals seeped into all aspects of daily life: oh, the delights of DDT! Oh, a burly man on your lonely Mom’s cleaning spray! Oh, the empowerment of Dove’s “Campaign for Real Beauty,” the one based on toxic synthetic ingredients! What a pretty-smelling world.

And what about the insidious weapons of mass destruction? Sarin and other nerve gases are concentrated pesticides, just like the ones people put on their dogs or lick off of strawberries. The chemical industry has made everyone complicit, and created an impenetrable denial about the toxicity of modern products. Occasionally, someone will freak out about one ingredient, such as phthalates in cosmetics. But one ingredient is not harming those of us with MCS or causing new diseases: it’s the whole fucking cake.

I bought the innocuous product myth until I no longer had a choice. When I arrived in San Francisco in 1992, I saw a job posting from a woman with MCS and her requirements for an employee were so severe – no products containing scents or essential oils, a clothing change at her house – that my friends and I just laughed. Imagine being so Karmically stupid!

When I later posted a job listing – with much the same wording as that woman in San Francisco – someone having a manic episode wrote me: “You sound fascist. Pernicious soul. Ever hating Jew. I am God. I am beautiful. Write back!” and “Maybe MCS is what you deserved. Just remember, when you [are] fucked over by life: Karma happens. Not everyone loves Burt’s Bees, you know. Good luck in the woods, dying off, you old hippie.”

This person has a psych disability (perhaps caused by neurotoxic chemicals too?), but s/he did hit upon some collective unconscious fear and loathing. This kind of bile is just as easily (and powerfully) expressed in daily gestures, and I’d rather have harsh words than destructive chemical insult. Sticks and stones cannot hurt me, but I live my life on the edge of becoming the next Cindy Duerhing – an MCS activist who died after an extremely isolated fight against the disease at age 36. Or Dan Allen, a football coach from Boston who died of MCS complications in 2004. His infectious team spirit could not rally the world to change for him in time to save his life. Can mine?

Learn how and why to be fragrance free.

Recommended

Watch the amazing MCS film Exposed on Free Speech TV. “EXPOSED is a cinematic portrayal of Katherine, a 35 year old dancer who suffers from Multiple Chemical Sensitivity (MCS), a chronic condition caused by exposure to synthetic chemicals in consumer products, pesticides, building materials, exhaust, tobacco smoke, perfume, cleaning agents, food additives and others. While skeptics, particularly in the traditional medical field and the chemical industry, still question its legitimacy, for Katherine it is a debilitating everyday reality, forcing her to live outside of the norms of her society. By Heidrun Holzfeind.”

Learn about MCS and chemical issues on Antidote Radio