Living with Environmental Illness: ‘Every Minute of Every Day this is With Me‘

April 9, 2003

Katherine Bowman‘s world is full of unseen horrors, like the ghosts in a haunted house film. But the phantoms in her life are real: they are toxic chemicals in the air, clothing, building materials and food which can leave her gasping and helpless after being exposed.
Bowman, 52, has been diagosed as having Multiple Chemical Sensitivities (MCS), or environmental illness, as it is sometimes called. The federal Centers for Disease Control says that MCS strikes people who are affected by very low levels of toxins in the environment. She is part of a small but growing group of people whose bodies are acutely attuned to the thousands of chemical substances we come in contact with every day in a world that is packed with synthetic products.
“Every minute of every day this is with me,“ she says. “And when I let my vigilance down, I get caught because I didn‘t notice something.“
A resident of Leelanau County and a registered nurse, she is compelled to wear a huge industrial filter mask in public which filters out volatile organic compounds, molds, petroleum vapors, diesel exhaust, formaldehyde and chlorine gases and other toxins that most of us breathe daily without a second thought. She also wears only natural fiber clothing, such as cotton or wool; sleeps on a natural fiber mattress; and must live in older homes free of gas-emitting insulation or synthetic carpets.

BREATHE DEEP
You can get an idea of the trials Kathy faces by simply focusing awareness on your own sense of smell. Breathe deep as you walk along a busy street on a spring day and you‘ll notice the decay of winter co-mingled with the reek of auto exhaust. Slip inside your car and consider that the pleasant “new car smell“ is the vapor of toxic gas escaping from the vehicle‘s plastic components. Walk into an office building and take in the smell of a new synthetic carpet -- again, a toxic gas. Visit a giant discount store and consider that you are inside a huge bell jar, filled with thousands of gas-emitting plastic objects, not to mention the synthetic ceiling, walls and floors.
Get the picture? That‘s why Kathy must wear her mask to public places -- because our indoor environment of “sick buildings“ is often a trap of roiling toxic fumes, while the outdoor air is filled with auto exhaust, ozone pollution, molds and the like.
“One of the most difficult things for people who have this illness is that there‘s no housing for this sort of thing,“ she says. “Some people end up living outside their houses. I have friends who lived outside their house all spring and summer. The whole family got sick; maybe it was the carpet, but they had to move away. It‘s a devastating thing and it takes years to recover.“

SENSITIVITY
Bowman has an extreme sensitivity to toxins which most of us breathe in without even noticing.
“Conventional medicine doesn‘t recognize what I‘ve got until you‘ve gone way down the road with it,“ she notes. “If I didn‘t wear my mask, I might start drooling and shaking, fall to the floor and pass out. Other times, I become very disoriented and dizzy and lose association with where I‘m at.
“I don‘t have asthma, but I do have a breathing problem that‘s deeper in the lungs,“ she continues. If I don‘t react to something at the moment, it can affect me hours later and I can be sick for days or weeks afterwards.“
She believes her problems date back 25 years ago when she was working on an organic farm in mid-Michigan. To make ends meet, she began helping another farmer and was exposed to formaldehyde and agricultural chemicals. She notes that exposure to mercury or head injuries are also believed to be triggers for the illness.
While pursuing her nursing degree at Michigan State University in the ‘90s, Bowman says she spent time as an employee and student in places known to have “sick building syndrome“ -- poorly ventilated spaces, rife with fumes and molds.
In 1998, she took a community nursing post, working with chronically-ill patients in an attempt to get them back in the workplace. She says the building she worked in was run-down and had been abandoned by prior occupants because employees had become sick there. Flooding in the basement contributed to molds, as did chronic leaks in the roof. Poor ventilation, gas leaks, toxic cleaning chemicals and insecticides added to the building‘s problems.

WORSENING PROBLEMS
“Over the next two years, I was developing a strange set of symptoms,“ Bowman write in an account of what happened. “Low blood platelet count, spasming, joint pain, chronic swollen tonsils and sore throats, brain fog, chronic fatigue, sudden acute neurlogical problems if I was in certain office spaces -- sudden slurred speech, weakness, confusion, facial changes, shortness of breath, nausea, chest pain, uncontrollable shaking and twitching of my legs and arms.“
Things went from bad to worse. “In the very beginning when I was totally disabled, everything seemed to be making me ill,“ she recalls. “There was no safe place to go, no place to crash -- it was just terrifying.
“I got so ill that I was barely conscious. I was falling to the floor, passing out and drooling. I had to go to the E.R. four times in two weeks. I became progressively sicker in that last two or three weeks and lost 25 pounds for no reason that anyone could discern. I became semi-conscious.“

SIMPLE ANXIETY?
When friends took Bowman to a doctor, he initially diagnosed her as suffering from anxiety.
In fact, the medical world is divided on the subject of MCS, with some physicians claiming that environmental illness is an anxiety disorder that‘s all in the victim‘s head.
“Most of us who have this are not willing to talk about it to anyone because it jeopardizes your mental health with people thinking you‘re nuts,“ Bowman says. She notes understanding and accepting the disorder can be difficult for friends and family over the long term.
The idea that environmental illness is all in one‘s head is part of popular culture as well. In the 1995, actress Julianne Moore starred in a film called “Safe,“ which told the story of a southern California housewife who convinced herself that she had environmental illness. Moore‘s character moves to a commune in the desert where things get progressively wierder with her fellow sufferers. Ultimately, she finds the self-love she needs to leave the commune, but the film is undecided as to whether environmental illness is a physical condition or a psychological problem.
“There is a percentage of people who are helped by antidepressants and treatment for depression, but statistically, the success of that treatment is very low,“ Bowman says.
In her own case, two doctors have diagnosed her as having MCS and a third suspected as much.
Bowman says that medical skepticism is starting to diminish as more patients show symptoms. She notes that last fall, author Michael Lerner spoke on the subject of environmental illness as part of Munson Medical Center‘s Alternative Medicine lecture series. And Bill Moyer did a public television special on the illness, subjecting himself to a blood test which revealed 82 toxic substances in the tissues of his body.
She adds that is may take large numbers of people to report symptoms of MCS before it‘s taken seriously. “A prominent physician who‘s nationally known for his work with MCS was asked when people will take notice of chemical illness, and he said ‘not until they start dropping like flies.‘“

EMERGING FIELD
“There are very few physicians in the environmental medicine field,“ Bowman notes. “It‘s an emerging field.“
It‘s also a field which poses a unique problem for the medical field in that Bowman says she can‘t be in a hospital room, filled with synthetics and the fumes from various cleaning agents. She also says she can‘t take prescription drugs or antibiotics.
“I don‘t have a good answer for the medical profession,“ she says, regarding the role in anxiety in MCS. “But it‘s believed that at least 30 percent of the population is directly affected by one thing or another in the environment.“ She believes that many of the chronically ill patients she formerly counseled were impacted in some way by environmental illness.
“One of the difficulties of this illness is that each person is an individual case and different chemicals can affect different systems of the body.“
She also points out that one indicator that MCS is a real problem and not a psychological disorder is a belief that cancer is on the rise, prompted by carcinogens in the environment.
“Women are getting breast cancer now at a dramatically lower age, down into their 20s and 30s,“ Bowman says. “If breast cancer is mostly genetic, then why is the age of the victims getting much lower? Something must be affecting it.“
As far as treatment, at this point it involves simply avoiding all contact with chemicals. Bowman is trying to treat herself with a super nutrition regimen that includes eating nothing but organic foods and large amounts of vegetables. She avoids process foods, sugar and anything containing growth hormones or antibiotics. She also takes 6,000-10,000 units of vitamin C each day

STATE OF CRISIS
Bowman lost her job as a result of her illness and went on total disability in August, 2000. She says she nearly lost her life as well. Eventually, friends loaded her into a van while she was semiconscious and moved her from her home in the Lansing area to Northern Michigan. She spent the next three weeks laying on an army cot in an uncarpeted room in a friend‘s home, trying to recover.
Since that time, she has lived in a cottage on Lake Michigan, but was forced to move after a reaction to molds. She has also done some house-sitting, but her time there is winding up and Bowman may find herself homeless again in the near future.
She finds herself becoming part of a subculture of MCS sufferers who are running out of options. Some have moved to the the deserts of the American west, trying to get as far away from our country‘s toxic lifestyle as possible. There, they live in tents or mobile homes -- in extreme cases, some persons are reportedly living in stainless steel shelters.
Bowman says she has come forward with her story in the hope of creating awareness of Multiple Chemical Sensitivity disorder so that it may help someone else.
“I lost everything over this,“ she says. “I lost my livelihood, I lost myh home; I had to sell my things off in order to get money to live on. I‘m incredibly grateful to have some financial support and extremely grateful to friends and family who‘ve been supportive. I‘m grateful to be alive. I don‘t think I went through all this just to hide away and not do all that I can for the next generation we‘re responsible for.“