Statistics are a vital part of any scientific investigation of a serious disease, but it is important to supplement them by stories that convey the human tragedy behind the numbers on a page. Countless cancer researchers were motivated to join the field because they had lost a loved one to the disease. Major research into the mechanisms of multiple chemical sensitivity (MCS) will occur only when researchers decide that MCS is not simply a bizarre condition that might give someone a migraine headache or joint pains or a rash but is in fact a disease that can make it extremely difficult for a person to find a place to work that doesn’t make them sick or a place to live where they will not experience constant symptoms. In a disturbing number of cases, suicide is the outcome when people cannot keep working or find a place to live. A former Shakespeare professor described his difficult situation with these eloquent words in my book Amputated.
Lives: Coping with Chemical Sensitivity: I have been told that early retirement is the American dream. Early retirement because of disability and a chronic, progressive illness is nothing but a bad dream, involving the loss of family, home, career, friends, mobility, income, and one’s health-almost everything one holds precious.
The psychological toll on people who have been highly productive members of society and then suddenly find themselves unable to work is enormous. For my first documentary about MCS, I filmed Randa, who worked in a land-use planning office in California before she developed chemical sensitivity after a new carpet was installed. She reported, “I haven’t worked for over ten years now, and that really does a job on your self-esteem”. It’s now been twenty-eight years that Randa has been unable to work.
A very successful painting contractor named Richard also had to give up his career because work-place exposures sensitized him to a wide variety of chemicals. He too found it devastating not to be able to keep working: I think especially as a man, not being able to work was very difficult. For all of my adult life, I guess I had identified with what I was doing for a job and had identified with my role as a business owner, someone
who was providing employment for other people, someone who was performing a service for people, someone who got a big fat paycheck when the job was done.
When Michael, who owned a large tree and pesticide business and sprayed over 100,000 gallons of pesticide every year, developed MCS, he also found that being unable to work had a profound impact upon his sense of personal worth: People-my wife, my family, other people, my brother especially-used to complain about what a workaholic I was, how I was just unbelievably driven, I would never stop. I would work weekends, I would work till dark. I just couldn’t get enough. Going from being a workaholic to wondering how you’re going to provide for your wife and your two children is pretty tough to take, especially as a male in this society. Society expects you to provide for your family, and people look at you strangely when you don’t seem to be working your normal forty hours or more.
Randa, Richard, and Michael developed MCS while working in jobs with varying levels of chemical exposures of the type that many Americans experience. During the waning years of the twentieth century and the first few years of the twenty-first century, however, particularly large exposures to toxic chemicals occurred because of three cataclysmic events that produced chemical sensitivity in large groups of people. These events that led to the development of MCS in so many Americans, many of them young men and women in peak physical condition, were the Exxon Valdez oil spill in 1989, the first Gulf War in 1991, and the terrorist attacks on the World Trade Center in 2001.
One man hired to help in the Exxon Valdez clean-up was a construction worker named Robert Bunker, who developed chemical sensitivity after his exposure to the toxic oil and the chemicals used in the clean-up. He later described the difficult working conditions on the beaches: All day long we were wallowing in oil. We were falling down all the time. . . . The rocks were kind of like bowling balls covered with oil. It was a big slippery mess. After the first few days, I was having nightmares that I was drowning in oil.
Part of the plan for removing the oil from the beaches consisted of giving the clean-up workers “pom-poms,” bunches of strands of absorbent material that resembled a cheerleader’s
pom-pom. The workers were supposed to wipe the oil off the
rocks with these absorbent pom-poms, which they would put
into plastic bags. Greta, a college student who joined the clean-up
effort during her summer vacation, later described what it was
like to try to clean the oil off the rocks using these pom-poms:
We would sit down on the rocks while we were working because
it was hard to bend down for hour after hour. There were fumes
coming off the oily rocks. . . . People were getting light-headed
and dizzy and nauseous from the oil fumes; we sometimes felt
like we might pass out. They had to take one person off the beach
because she was starting to hallucinate. . . . We were always
sitting in oil, and the odor would give us headaches. When we
leaned down to work, oil would often splatter on our faces and
sometimes our wrists would get exposed. We couldn’t pull off
our gloves to eat without ending up with oil on our hands and
on our food.
This heavy and prolonged exposure to toxic crude oil had a
lasting effect on Greta’s life, as she later recounted: One of the
things that has affected my life in a major way is the chemical
sensitivity I developed after the oil-spill cleanup. I always end
up with a headache if I use hair spray, and I can’t use perfume
now because it gives me a headache and often makes me feel
angry. Before I worked on the oil spill, I could paint my nails and
use polish remover. Now I can’t stand it when my daughter uses
polish remover. I can’t use white-out because it makes me feel
sick and headachey and my chest starts to tighten. I have to avoid
gasoline and diesel. My parents and my sister who worked the
spill with me can’t use perfume now either, and we all have to be
very careful what cleaning products we use.
The Potter brothers–Roger, Mike, and Paul–were
construction workers who had been having trouble finding
enough work after the Alaskan pipeline was finished, so they
quickly signed on to help in the cleanup operation. Roger was the
lucky one of the three brothers and twenty years after the spill
he had not developed any apparent lasting health effects from
his clean-up work. His brother Mike was not so lucky, as he later
recounted: We felt nauseated all the time we were working out
there on the beaches, and headaches were rampant. . . . Then in
addition to all the oil we were exposed to, there were a bunch of
chemicals that we used. We would request and request that we
be given the hazardous chemical plat that was supposed to be on
top of the containers of chemicals, but we never could find out
what ingredients were in the containers. We didn’t have more
than a name on the container. . . . We nicknamed one chemical
Agent Orange. One of the things it was used for was to wash
the oil off the boats and skiffs. It was eating the membranes in
people’s noses. On our second or third R&R, word was getting
out that if you are asked to work around this chemical, you
should refuse to do it.
About three years after the spill, Mike started developing
troublesome health problems that included some serious
memory loss problems. Some growths erupted on his arms that
resembled huge warts that were about 3/4” thick and about the
size of a silver dollar. He also started having blackout spells and
developed serious fatigue. In addition, he noticed that exposure to
cleaning solvents made his arthritis worse. Chemical sensitivity
was an even greater problem for the youngest brother, Paul, as
Mike recounted after his brother’s early death: We were picking
up debris like dead oil-soaked wildlife that gave off a terrible
rotten stench. We put this stuff in plastic bags to be picked up by
a little barge, and these bags were sitting on the beaches in the
hot sun. Usually the tops were twisted, but when Paul picked up
this one bag, the top swirled open and gases poured out onto his
face. He staggered around and said he couldn’t see, so some guys
had to grab him. They sent him to Anchorage on a helicopter,
and he spent several days in a hospital there. The exposure kind
of paralyzed his breathing. He got some of the stuff in one of
his eyes and almost lost it; he was actually blind for a while. . . .
After that incident, almost any chemical would cause Paul to feel
Paul’s widow recounted how the products that he had
regularly used in his carpentry work started bothering him
after his exposure on the oily beaches: There were at least four
times that he had to get medical attention because of exposure
to something toxic. One time when he was putting a sealant on
a deck, he got really sick and dizzy, so they had to take him to a
clinic. They called a poison hot line and hooked him up to IVs to
get him stabilized. Sometimes he would have a milder reaction,
but he would still end up stuck in bed for a couple of days with
a violent headache, feeling yucky and kind of weak. He would
react to almost anything that was petroleum based. Once when
we were painting an apartment and using an oil-based primer
on the walls, he almost passed out into the tray of paint. He had
never reacted to things like that before Exxon Valdez. . . .At the
time Paul died, the two of us were working as caretakers for an
apartment complex. The week before he died he told me that the
gas fumes from the snow blower were starting to make him sick. .
. . It was only a half hour after he came in from snow blowing one
day that he had a massive heart attack. He died in the ambulance
on the way to the hospital. His doctor said that the snow blower
gas fumes were most likely what had killed him. Paul was only
forty-four when he died.
The soldiers who fought in the 1991 Gulf War also found
themselves surrounded by a wide-range of chemicals on what
was termed by some to have been the most toxic battlefield
in history. The troops were exposed to a wide range of toxins,
including nerve agents, pyridostigmine bromide (PB) pills used
as a prophylactic against potential chemical weapons attacks,
oil well fires, depleted uranium, pesticides, and anthrax vaccine.
In November 2000 the American Journal of Epidemiology
published an article that indicated that over 34 percent of those
who served in the Gulf War-over 200,000 veterans-are now
chronically ill .
Almost all the veterans whom I filmed for my documentary
Gulf War Syndrome: Aftermath of a Toxic Battlefield now suffer from an extreme sensitivity to petroleum products, a sensitivity
that they never had before the war. And this sensitivity seems to
have spread over the years to many other chemical substances,
such as fragrances, fresh paint, cleaning products, pesticides,
and cigarette smoke. The following passages from my GWS video
illustrate the range of the problems now facing veterans who
fought in the Gulf War:
I had spent eight years in the 82nd Airborne Division as a
paratrooper, so I had had extensive exposure to jet fuel and jet
fumes, and these things had never bothered me. But having spent
forty-five days in the area where the oil wells were burning,
breathing the noxious fumes on a daily basis, now just the smell
of diesel fuel makes me severely nauseated, dizzy, and very sick.
I try to avoid getting behind school buses because diesel exhaust
really bothers me, as do other odors and smells. Perfumes are
also a problem; I don’t wear any type of cologne because it makes
I couldn’t pump my own gas . . . the gas fumes would make
me vomit. . . . If I breathed automobile fumes, truck fumes, again
I’m nauseous, trying to not vomit. I have problems breathing on
buses because of the diesel fumes and to some extent with cars
because of the petrol fumes. I have problems using household
disinfectants and chemicals because it causes my airways to
close, and it causes me to start choking.
Margaret Wilcoxen, whose husband Jay died of cancer
not long after the end of the war, described his reactions to
chemicals after his return: When my husband first came back
from Saudi, to even put gas in his vehicle, he would throw up.
To change oil, his hands, it looked like little worms would come
out on his hands. And they told him he had an allergic reaction
to petroleum products. . . . Whenever I would use a pine-scented
cleaner, when he’d get out of the truck, he would have to get right
back in, he couldn’t even come in the house. He would just start
The biggest thing is the sensitivity to stuff. You used to go out
all the time and paint your house and use the thinners and stuff,
and now you’ve got to avoid the use of the thinners. When you
pump your own gas, like myself, I’ve got to turn away so I don’t
breathe the fumes. The chemical sensitivity is becoming just
unreal, and you notice it now. Before, when you would pump gas,
you used to stand there and smell the fumes, you know, great,
this stuff don’t bother me. And now you’ve got to try to hide and
pump at the same time.
My problems with chemical sensitivity began right after the
Gulf War. I still cannot pump gas or diesel fuel; my wife pumps it
while I sit in the car or truck with the windows rolled up. [When
I went back to work], I started having problems that I never had
before. The automatic air freshener dispenser in our office was
making me sick, as were paint and diesel fumes.
For the veterans suffering from Gulf War syndrome, the
chemical sensitivity that they developed in the war is a burden
that affects every aspect of their lives, and in particular, their
ability to work. Mechanics who have become sensitive to
petroleum products can no longer repair cars or other machinery.
In my GWS video, Sfc. Terry Dillhyon and Sfc. Roy Twymon both
describe perfume exposures that put them in the hospital for a
couple of days. Trying to find a job where one can avoid exposure
to substances like gasoline, solvents, paint, cleaning products,
new carpet, diesel exhaust, perfume, and aftershave lotion
quickly becomes an exercise in frustration for these ill veterans
whose lives were changed forever by their heroic service in the
Ironworker John Sferazo rushed to Ground Zero as soon as
he saw the Twin Towers burning. Ironworkers were in great
demand to help cut up the huge iron beams so he worked long
hours for the first few days. Even after he had to return to his
regular construction job, John worked several hours at the end
of each day helping to cut through the debris. The twenty-nine
days he spent working on the pile left him with permanent
damage to his health.
After breathing in all that toxic dust, I started getting
repeated lung infections and pneumonia. Now I have reactive
airway disease and what they call COPD, chronic obstructive
pulmonary disease. I don’t know if I can ever hold any kind of a
real job now. . . . Now what I used to make in a day I have to live
on for a week..
Like so many other First Responders or residents of the
area who were exposed to the Ground Zero toxins, John is now
sensitive to a wide array of common chemical substances:
Since 9/11, the smell of gasoline and diesel fuel bothers me
so much that I don’t get out and even fuel my own vehicles. I
don’t even want that stuff on my hands because of the odor.
Being around the job sites and being around the smell of the
diesel and gasoline, I was constantly getting problems with
my throat. I would wind up going hoarse, and I would lose my
voice. . . . Now I get headaches and burning in my lungs when I
smell cigarette smoke, even though I used to work all the time
in an environment in which you would smell welders burning
welding wire or burners cutting through iron. Since 9/11, the
smell of smoke sometimes makes me gag or feel like throwing
up. I can’t use cologne or aftershave. I can’t take that smell; it
causes a burning feeling inside my nostrils. I notice now that
some types of cologne have a very, very strong, pungent odor
to them. Wherever I smell that kind of smell, I just have to get
away from it.
Rachel Hughes was a young artist who volunteered to help
unload trucks and pass out sandwiches to workers at Ground
Zero, an act of compassion and patriotism that would cost her
dearly, as she later described: Within days of the 9/11 attacks,
I had a fever and a constant headache; I was also vomiting
and feeling dizzy. A bad cough made it hard for me to sleep. I
was also having trouble breathing and had considerable chest
pain and tightness. One of my worst problems was that large, unsightly sores started erupting on my scalp, face, neck, arms,
and back. . . . About a week after 9/11, I returned to work at my
office, which was located about eight blocks north of the Trade
Towers. . . . There was still thick dust all over our office, so we
had to help clean our work spaces ourselves. I wore a surgical
mask to work for several weeks because the air smelled horrible
and was so thick with dust that it was hard to breathe, despite
the assurances from the head of the EPA that the air was safe
to breathe. . . . Even three months later the smoke in the area
was still thick and made my eyes sting. Despite all the smoke
and dust and fumes, I continued to work full-time in Lower
Manhattan until I was laid off in December 2001 because of the
negative effect 9/11 had on business.
My health problems related to the 9/11 toxic exposures have
steadily worsened. I frequently have pneumonia or bronchitis.
. . . Daily headaches are a problem, and I continue to have
constant chest pain and pressure. My diagnoses include lung
scarring. Chemical sensitivity became a significant problem for
me after my exposure to 9/11 toxins. I have had to stop wearing
perfume and start using unscented body lotion and shampoo.
The chemicals like ammonia or solvents that they use to clean
the elevator or halls in my building make it difficult for me to
breathe and sometimes give me a migraine. I actually try to hold
my breath in the elevator because the cleaning products affect
me so strongly.
I have always been a dedicated artist, but I can’t paint right
now because I’m too sensitive to the paint, even water-based
paint. During the four decades that I have been following the
field of multiple chemical sensitivity, I have become all too aware
of the terrible effect that this little-understood condition has had
upon the lives of people from a wide variety of backgrounds and
jobs. It has been particularly disturbing to watch the numbers of
chemically sensitive Americans grow at such an alarming rate.
It is my hope that this rapid proliferation of cases will at last
motivate the medical establishment to recognize the seriousness
of this condition and give it the attention and research funds
necessary to reverse the trend before more and more people
end up unable to work and dependent upon government funds
to stay alive.