Conscious Choice: This Canary Wants to Sing

January 2001

This Canary Wants to Sing

Living with Multiple Chemical Sensitivities

by Juli Brussell

Imagine living in a bubble of anxiety, knowing that any moment you might break out in a debilitating rash or begin struggling just to breathe. Imagine that your world becomes a queasy nightmare in which simple acts such as going to work or to the store leave you weak, breathless, or worse. And imagine living with chronic pain, fatigue, headaches, depression, and liver dysfunction. You have imagined my world and the world of many thousands like me: the chemically challenged. Our pain and problems are a warning to you and others that exposure to the thousands of chemical compounds commonly found in our industrial environment may be killing us, some more quickly than others.

Some of us — the iceberg’s tip — are diagnosed as suffering from an environmental illness often known as multiple chemical sensitivities. Others continue to live and die with these problems undiagnosed. We are poorly served by a medical profession that often lacks the sophistication, or perhaps simply the time, to evaluate the underlying etiology, or causes, of our symptoms. Our reactions to environmental insults vary greatly, though we all have similar stories. Often some incident in our past involving exposure to chemicals, possibly coupled with other factors such as lengthy treatment with antibiotics or hormone disruption through birth control pill use, overstepped a tolerance threshold in our bodies. As a result, we react negatively to chemicals, most often preservatives or petrochemicals, that others take for granted. Common offenders include volatile compounds, which form gases on exposure to air or sunlight, such as perfumes, side-stream cigarette smoke, preservatives like formaldehydes or urea, and agricultural and lawn chemicals. Synthetic food additives or pesticide residues on foods also may cause problems.

Some of us react so badly that we can no longer exist in this world of industrial chemicals and must confine ourselves to "safe houses" built of nontoxic materials, having limited contact with the outside. Some of us have to give up our jobs; some of us find our relationships suffer. Some wear face masks to screen out toxic volatile chemicals in public and use expensive air filters at home. Others — such as I — get by through avoiding the worst-offending materials and living with the fatigue, joint pain, rashes, breathing difficulties, and gut irritations.

Because our illnesses and our medical difficulties may signal widespread environmental health and environmental problems, we call ourselves "the canaries." You may recall from history class, or a visit to the Museum of Science and Industry, that people working in mines once carried canaries or other small caged birds with them when they descended into the mines. These birds, being more sensitive than humans to toxic and deadly gases found in the earth’s depths, served as early warning systems. When the birds died, the miners knew it was time to get out of the mine.

What the Canary Sees

Unfortunately for us modern-day canaries — and for the rest of you — it isn’t possible to avoid all the toxic substances with which we now come into contact. And exposure is taking its toll. If that sounds overly dramatic, consider this — according to the Center for Disease Control, environmental exposures are one possible cause of asthma, an often debilitating and occasionally fatal lung condition characterized by wheezing and difficulty breathing. This is significant in light of the fact that the number of U.S. residents diagnosed with asthma more than doubled from 1980 to 1998. Almost five million children now suffer from the illness.

A number of pesticides that were popular in the past have now been recognized as probable carcinogens and others are yet to be tested. Several researchers, including Dr. Elizabeth Gillette at the University of Arizona and Dr. Warren Porter at the University of Wisconsin-Madison, have linked exposure to agricultural chemicals to perceptual and behavioral disorders in children. The Cancer Prevention Coalition noted a six-fold increase in the number of American children being prescribed Ritalin, an amphetamine, since 1990. In addition, many common food additives such as aspartame or agricultural chemicals such as atrazine have been linked to behavioral disorders, physical illnesses, or cancer.

And not only people, but whole buildings are being diagnosed as "Sick." Poor indoor air quality in many public buildings has given rise to a rash of lawsuits and articles about "sick building syndrome." The federal Environmental Protection Agency (EPA) now publishes a guide to indoor air quality on its Web site. It explains how exposure to many common chemicals, including preservatives and petrochemicals, can make you ill and what to do to mitigate or reduce your exposure. Ironically, the EPA, once the agency charged with protecting the environment from human impacts, is now spending its resources protecting us from the environment.

Unfortunately, the EPA tests chemical compounds only for carcinogenic, or cancer-causing, effects. Substances in question are tested singly for acute dosages: the level at which cancer occurs. We are not normally exposed to environmental chemicals in this fashion, unless we are pesticide applicators who experience an accidental spill. Instead, we are exposed to low doses of many chemical residues and outgasses. We also are routinely exposed to the "daughter products" of chemicals — compounds into which these chemicals break down. These are never tested, even for their cancer-causing potential.

Many chemicals considered harmless by the EPA may act as catalysts for other chemicals, boosting their negative impacts, or they may cause reactions less acute and more chronic than cancer, including severe depression or liver toxicity. Some of these chemicals, such as plasticizers commonly found in plastic items, act as endocrine disrupters. They disturb the mechanisms that regulate our hormones, often by mimicking naturally occurring hormones such as estrogen. Our bodies, confused by these chemical signals, often react inappropriately; occasionally they turn on themselves, producing antibodies that fight their own immune systems.

Autoimmune diseases such as lupus, fibromyalgia, and multiple sclerosis have been linked to chemical exposures but the jury is still out and the results inconclusive. Finding research dollars to investigate these linkages is difficult. The chemical industry lobby is powerful, and some researchers find themselves under attack if their studies indicate negative impacts from trademarked products or chemical compounds used as ingredients by large companies.

Activism Is the Best Medicine

Dr. Gina Makris, a nationally recognized expert on environmental impacts on human health, consults with those afflicted with environmental diseases such as multiple chemical sensitivities (MCS), chronic fatigue syndrome, and fibromyalgia, as well as their advocates and health support teams. Dr. Makris, of Optimum Health Management, located in the Chicago area, specializes in clinical nutrition and indoor air quality impacts. She herself is chemically sensitive, possibly as a result of lead and heavy metal exposures that occurred during a number of years when she was living in Mexico. She fought hard to find answers and treatment for her symptoms when they started. She now works with her patients and others who experience negative health effects resulting from chemical and heavy metal exposures in the environment. Her approach is both preventive and supportive, which is one reason she diligently advocates for improved indoor air quality.

"If you are experiencing health problems from VOCs (volatile organic compounds), adding an air filter to your home or office that removes particulates (HEPA-rated) is not sufficient. You have to use a filter that removes both particulates and gases — and that is harder to find commercially," Makris informed me. "This filter needs to be rated as both HEPA and HEGA."

Makris works with several other doctors for intervention and treatment of related disorders, such as liver toxicity, chronic pain, and severe depressions. She recommends examining your diet closely and eating organic foods — period. "What you eat affects your body, and foods grown organically can give you necessary nutrition while lessening the burden of and potential for toxic residues. This is particularly important for chemically sensitive people, who need more nutritive support and cannot tolerate any additional toxic impacts, especially those hidden in the food chain. But it is also important for everyone else, because this is one area of our lives where we can control our chemical exposure. We may not have the same degree of control when it comes to the air we breathe or the buildings we walk into," she notes. "Eating organically is one area where we can play safe."

Makris also believes that people diagnosed with fibromyalgia might want to dig deeper. She says that any diagnoses of fibromyalgia, a condition characterized by sleep disorders; constant, recurring deep muscle pain; and fatigue, indicate a doctor who has not looked hard enough prior to medicating the symptoms. The symptoms are similar to those of MCS, which has known causes, compared to fibromyalgia, which has only associations. For example, stress is associated with fibromyalgia, but chronic stress — like some chemicals — also acts as an endocrine disruptor, causing abnormal body levels of hormones and enzymes that may aggravate chemical impacts. Thus countless people with MCS are misdiagnosed — as I was, ten years ago — and sent home.

It turns out, however, that I am one of the "lucky" ones. My symptoms include a visual referent. I break out in red welts when I encounter certain chemicals, including VOCs from formaldehydes and urea, common preservatives in everything from treated wood and particleboard to over-the-counter cosmetics and lotions. When the red welts start across my right cheekbone or the backs of my scarred hands flare into an angry red rash, I know I have encountered something toxic. I can smell a lit cigarette from a car ten lengths in front of me on the interstate, with the windows closed. An acute sense of smell is a sort of blessing that accompanies multiple chemical sensitivities. On the other hand, I experience more difficulty breathing now, and traveling isn’t as much fun as it used to be.

I have lived with this condition for more than twenty-seven years. Unwittingly, I earned it. I remember playing, as a small child during the late 1950s, in experimental agricultural fields at Texas A&I College. Back then, DDT was the buzzword. We rolled up our big car windows casually as the crop-dusting planes flew over the road between cotton fields. White insecticide spewed everywhere, like a blanket, or a shroud.

Of course, my chemical exposure did not end with my childhood. If anything, it increased, along with our culture’s dependency on chemical compounds. As a hydrogeologist working in agricultural chemical remediation, I became sick after one five-hour site visit to an agricultural chemical warehouse. My last full-time job in a new building sent me home with red welts on my cheeks for more than a year. Now I teach food systems courses, write, work as an advocate for organic agriculture and as a consultant for sustainable enterprise development. And I live on an organic farm. Most of our food is organic; we grow it ourselves or get it from farmers we know.

I have not lived in a city exposed to chlorinated water for more than ten years. I wear as much natural fiber clothing as possible and stay away from toxic chemicals if I can. I work mostly out of my home and try to stay out of new buildings. Oddly, in my awareness of the dangers I face, I realize I really am one of the lucky ones. I am a canary, of sorts, — but we are all in the mine.

What Chemicals?

Even minor chemical exposures add up when you consider the thousands of common and not-so-common chemicals that make up the stuff of modern life. Did you wash your hair with shampoo today? Take a shower in chlorinated city water? Dress in clothing made from synthetic fibers? Ride to work on a bus or in an automobile? Cook on a gas stove? Work in a carpeted building with windows that don’t open? Sleep on non-organic cotton sheets or a latex mattress? Eat processed foods, wrapped in plastic, made with conventionally grown crops or livestock? Sit in front of a computer in an office cubby next to someone wearing perfume? Walk down the detergent section of a grocery store aisle? Walk across a grassy area treated with lawn chemicals? Did you maybe do all of these things in one day?

Resources

Dr. Makris can be reached at drmakris@earthlink.net or 847-458-2596, Optimum Health Managament.

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