People With Multiple Chemical Sensitivity Are Becoming the New Homeless

[Guest guest]

No Safe Haven

People With Multiple Chemical Sensitivity Are Becoming

the New Homeless

Photographs and Interviews by Rhonda Zwillinger

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

'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.

" I was poisoned by the toluene in new money. "

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 le (born 1994),

Sedona, Arizona:

" My husband, Rabbi , and our two daughters,

Margie and le, 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 le 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 le (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. recites from the

Torah: 'Spread over us the shelter of your peace.' "

CATHERINE R.

" I lived a privileged life

before I became ill. "

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.

" We had to flee Chapel Hill, North Carolina. "

Christie B. (born 1967), B., den, Arizona:

" My husband, , 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. 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.

" I hid my illness from family and friends. "

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./NAT/SAM

" We have lived in the van for over two years. "

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.

" Homelessness is expensive. "

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.

" I had a heart attack at 28. "

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.

" The buses I drove were sprayed with pesticides. "

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. "

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, den, AZ 86334-0402.