In her book Amputated Lives: Coping with Chemical Sensitivity, Alison Johnson brings to life a disease that affects millions of Americans. It is a disease that is not understood by physicians caring for these individuals. It is a disease that is not understood by employers. It is a disease not understood by family members. And perhaps most distressingly, it is a disease that is preventable. The name of this disease is chemical sensitivity, manifesting in its most severe form as multiple chemical sensitivity.

For those affected, this disease is often a prison sentence without parole. Homes can sometimes be made "safe." But environments outside the home cannot be controlled and therefore are not safe––tolerable maybe––but not safe. Chemical exposures occur unpredictably, with incapacitating consequences. These chemicals are ubiquitous and include perfumes, colognes, hair spray, detergents, carpet components, adhesives, pesticides, and vehicular exhaust.

It is no wonder that, as Johnson chronicles, individuals are disabled from work as a result of chemical sensitivity. Homes become uninhabitable and alternative living arrangements are difficult to establish. Families are destroyed. At the very time when substantial economic resources are required to create a safe living environment, it is difficult for individuals with the disease to find a workplace that does not make them sick.

Chemical sensitivity makes every day a challenge for those affected. Chemical sensitivity also presents a challenge to physicians caring for these patients, as I have done for more than two decades as Co-Director of Occupational and Environmental Medicine at the Massachusetts General Hospital. For the physician, the first challenge is to make the diagnosis. In order to do this, physicians must consider chemical sensitivity when presented with a patient experiencing multi-system symptoms. Application of the differential diagnostic method will fail if the diagnosis is not considered. In addition to putting chemical sensitivity on the "to-rule-out" list, physicians must take a detailed exposure history, with focus on temporal associations between chemical exposures and onset and/or worsening of symptoms. . . .

All my books and documentaries have had a central goal in mind–to convince readers and viewers that chemical sensitivity is real and is devastating far too many lives. In the ten years that have passed since I produced and directed my first documentary, Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, more and more people have been succumbing to this condition. Hardly a day goes by that I do not hear from someone who is close to despair because they see their former life slipping away from them as they struggle with a condition that the medical profession has largely ignored.

Last month a taxicab driver from Las Vegas e-mailed to say: "I was making good money driving a taxi and had to resign because the other driver would spray it with air freshener. Eventually the cab made me so sick I had to quit." A man in a state prison wrote to say that he was getting terrible headaches from the scented products that his cell mate uses. Another e-mail came from a New York City police detective who toiled for months on the World Trade Center cleanup and is now too sick to work. He has become extremely sensitive to cleaning products, fragrances, and diesel exhaust and summed up his condition by saying, "I am beyond miserable."

An artist who has found it enormously difficult to find a place to live that she can tolerate expressed her frustration by writing: "In the search for a new home, I came to know full well an overwhelming feeling of desperation, and along with that desperation came the growing conviction that the chemically sensitive are viewed as ‘throw away’ people."

In Part II, people who are chemically sensitive describe in their own words how this has changed their lives forever. I have also used extensive quotes from these individuals in Part I instead of filtering their experience through my own words. It is my hope that this book will persuade readers that those unfortunate enough to have developed multiple chemical sensitivity are not "throw away" people, but the proverbial canaries in the mine alerting us that the rapid proliferation of chemical products in our environment may be endangering all of us.

Four cataclysmic events have rocked the United States in the last two decades: the 1989 Exxon Valdez oil spill, the 1991 Gulf War, the destruction of the World Trade Center in 2001, and Hurricane Katrina in 2005. At first glance, these events might seem to have little in common, but all left in their wake significant numbers of people who are now chronically ill after exposure to large amounts of toxic chemicals. Some were volunteers or held jobs that left them little choice; some were just in the wrong place at a very wrong time. Hundreds of thousands of Americans became the "designated fall-guys," finding themselves on the front lines of wars or natural disasters. During the cleanup operations in Alaska, at Ground Zero, and in the New Orleans area, thousands of people stepped forward to remove toxic substances in an effort to enable the pristine waters of Prince William Sound, the world’s financial hub in Lower Manhattan, and the jazz capital of America to return to at least some semblance of normalcy.

Regrettably, the national attention span is short. The sick workers who helped clean up the oil from the Alaskan beaches are not on anyone’s radar screen. Two whom I interviewed were coughing so hard because of the asthma they had developed after cleaning the beaches that we could hardly continue the conversation. In November 2000, the American Journal of Epidemiology published a study showing that 34 percent of those who served in the Gulf War–over 200,000 veterans–are now chronically ill. The young men and women who answered their country’s call to serve on what has been termed the most toxic battlefield in history have felt abandoned for over seventeen years.

Then there are the heroes who responded to the World Trade Center disaster. Slogans on bumper stickers and in store windows throughout New York proclaimed that the 9/11 heroes would never be forgotten. Now most feel they have indeed been forgotten as their health deteriorates and they lose their jobs and the medical insurance that went with those jobs. In the case of Katrina, neglect has been even more evident, and little has been done to acknowledge the widespread exposure to toxic chemicals and mold encountered by residents and cleanup workers.

Large numbers of people who became chronically ill after these major exposure events have developed a new sensitivity to the chemicals they encounter in everyday life in substances like perfume, paint, gasoline, cigarette smoke, diesel exhaust, new carpet, cleaning products, and air fresheners. . . .

One of the most difficult challenges faced by those with MCS is the widespread disbelief in the condition that they encounter from people who think it is simply a psychological disorder. Dr. Robert Haley of the University of Texas Southwestern Medical Center in Dallas, who is heading a $15 million-a-year research program on Gulf War syndrome, used to hold that opinion. When I was interviewing him for my book, Gulf War Syndrome: Legacy of a Perfect War, Dr. Haley told me: "Before I got involved in the Gulf War syndrome research, I assumed that MCS was a psychological problem. I’ve seen it now reported by so many veterans who clearly are not psychologically impaired that I now consider MCS and related problems a very serious medical issue in need of serious research" (p. 145).

One of Robert McCloskey’s famous children’s books, One Morning in Maine, describes a morning spent taking his two little girls, Sal and Jane, from the family island over to the mainland to buy supplies. The setting seemed idyllic and pristine, but decades later, Jane, who was still living in the same area of coastal Maine, developed multiple chemical sensitivity. She too has had to struggle with disbelief:

Sue, who suffers from extreme chemical sensitivity, did give up on life on two occasions, both directly related to the great difficulty she had experienced trying to find a safe place to live and to work. In her story in Part II, she describes in poignant terms the despair that drove her to try to take her own life, even though she had a very supportive husband who loved her very much. In her story, she relates the enormous sense of frustration she felt when physicians, friends, and family viewed her symptoms with skepticism.

One particularly tragic example of the fact that disbelief can indeed sometimes kill appears in an e-mail that I recently received from Ann McCampbell, M.D., a board member of the Chemical Sensitivity Foundation, who has written a very useful educational booklet on multiple chemical sensitivity. Dr. McCampbell wrote:

A woman, Rachel _____, had called me a couple weeks ago and wanted to order 50 of my booklets. When I called back to say they were ready to ship, a woman answered the phone and said that Rachel was "deceased," had hung herself about a week ago! How awful. She lived in Ohio.
I am wracking my brain to remember what she might have told me about her situation. I know she wanted booklets to try to increase awareness of and sympathy towards chemical sensitivities, but I don't remember the details.

It’s clear that Rachel was so concerned about the disbelief she was encountering that she was willing to spend a considerable amount of money on booklets to try to counter this disbelief. Rachel’s tragic death and Sue’s two suicide attempts show that there are many ways to "assist" in suicide. Dr. Jack Kevorkian was strongly condemned for assisting in suicide. Unfortunately, many physicians, employers, family, and friends are in effect assisting in suicide through their disbelief. . . .

It’s Christmas morning in the Northwest. And, for the eleventh Christmas in a row, I am sitting in my car, hanging out in a city park, trying to stay warm and dry. I’m forty-nine years old and have multiple chemical sensitivity (MCS). Like many others with MCS, I also suffer from chronic fatigue immune dysfunction syndrome (CFIDS). My MCS is severe enough that for the past eleven years I’ve been unable to go inside a house or building for any length of time before I start reacting to something. Severe enough that I’ve been forced to live in my twenty-two-year old car, which lost long ago that "new car smell."

What I react to depends on the situation. Sometimes it’s the personal care products people are wearing, like perfumes, deodorants, lotions, and hair spray. Sometimes it’s the carpets, computers, furniture, and plastics in a room that are "off-gassing" chemical compounds. Sometimes I react to pesticides, cleaning products, or the chemicals off-gassing from paint. Indoor air is a heavily polluted soup of chemical compounds to which my body reacts adversely.

My reactions vary depending on the type of chemical pollutant I’m exposed to. My most frequent reactions are blinding headaches, a nasty metallic taste, tingly face, hoarseness, difficulty breathing, burning lungs, and stinging eyes. Less frequent but much more serious reactions are throat closure, asthma, chest pains, dizziness, and disorientation.

So in my old out-gassed car I am sitting in a park on Christmas morning; the park for the time being is "safe" (meaning I’m not reacting to anything). However, this could change at any moment because outdoor air is heavily polluted as well. In some areas, various types of industry, big or small, are belching out chemical pollutants. Many homes are polluting the surrounding air by burning wood or synthetic logs. Every house has a dryer vent, and the smell of detergent and the fabric softener in dryer sheets can travel a considerable distance. What also drifts, especially with a breeze, are the fertilizers, pesticides, and herbicides that are used around homes and other buildings. Local and state governments are heavy users of these products, especially herbicides. The roadsides people walk and bike on are regularly sprayed to keep noxious weeds from growing. Living in my car, I spend a good deal of time in the parks in my area; these are also sprayed and fertilized at various times of the year. And of course the exhaust from cars, trucks, and buses is a large source of pollution.

As you can see, living in my car and spending most of my time outside is not a good solution to my problem. On a daily basis I have to pick or guess which will be better or worse, indoor pollution or outdoor pollution. For me, the more tolerable environment is usually outdoors. The simple fact is I’m mobile, and when a problem sud denly arises in one area, I can move to a different area away from the offending chemical pollutants. The challenge, of course, is in trying to out-maneuver or outrun the pervasiveness of chemical pollutants in the air.

I’m often reacting and therefore frequently moving. I drive 2,000 to 3,000 miles per month; much of that mileage is the result of moving around to try to find a safe spot. The bottom line is that I spend almost all my time in my car, exhausted, sick, in pain, and always on the move. . . .