Amputated Lives - Coping with Chemical Sensitivity

Book Intro | Table of Contents
Excerpts

Foreword by L. Christine Oliver, M.D., Harvard Medical School

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. . . .


Preface

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.


Introduction

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. . . .


Chapter Three: The Consequences of Disbelief

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:

  Over the years I have often experienced anger about how skeptics treated my MCS with contempt, skepticism, and a lack of compassion. Would the skepticism be overcome with time and truth, or would it remain forever? The answer, ten years later, is that many people are still skeptical and righteous in their disbelief. . . . Now I am resigned that without a research breakthrough, which doesn't seem likely, conventional doctors and those who trust them will continue to treat us with disbelief.
 
  Casualties of Progress, p. 198


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. . . .


John Sferazo: 9/11 Ironworker

. . . We cleared the streets up to a flooded location that was very close to where the South Tower had been. There was a small pool there because right after the attack the New York Fire Department had been instructed to spray water on the cooling tank below the South Tower to keep it from overheating and possibly exploding. At first, we had no idea that we were looking at a large pool of water because the surface was covered with what looked like oatmeal. This was the powdery remnants of various construction materials. To this day, we have no idea what toxic chemicals we may have absorbed through our skin when we waded through pools of water like this.

All around us a thick cloud of fine fibers and particles was floating in the air. It was so thick that you could almost cut it with a knife. When there were slight gusts of wind, an even thicker cloud of dust would float by and engulf you, causing you to tear-up and choke uncontrollably. We kept coughing out chunks of debris and dust that we couldn't avoid breathing in or swallowing.

After clearing West Street as far as that new pond on that first day we were there, we had to wait for our oxygen tanks to be delivered so that we could start cutting up the iron beams with our acetylene torches. In the meantime, a bucket brigade started moving debris off the pile. I helped do this for a while until I saw a police officer with a search-and-rescue dog. Since I had been trained and certified in wild land search-and-rescue by the NYC Department of Environmental Conservation, I asked the policeman if I could accompany him and his dog. Having been on the gymnastic team and the track team in high school, I was very agile and could follow the dog into the deep holes that he entered. Wherever there was a hollow in this immense pile, that was where this dog would nose around.

Sometimes the dog and I went down several floors below street level, almost like we were exploring some dark cave. I remember that one time I had to lie down with my back against the web of a column that was now lying flat in this pile and use the column flange overhead to guide me as I followed the dog. As I worked myself further and further down into this debris, with only a small flashlight to guide me, I had to pull myself over pieces of electrical conduit and pipes. Every now and then I would become entangled in something. I kept thinking that the wreckage above me might collapse on top of me at any moment. At least during the daytime, I could see a little light at the end of the "tunnels" I had climbed into, but at night I didn't even have that to guide me in retracing my steps and had to rely solely on my flashlight.

I worked with the policeman and his dog for only six or seven hours, but it seemed like a lifetime. When the dog found what he was after, he lay down next to it and looked at me or barked. The worse thing this dog found was what was left of a man's head, and I could only tell that when I put the light on it. I had to carry it out of the pile to hand it over to a group collecting human remains, and I still have nightmares about carrying that piece of a man's head. I doubt if those dreams will ever leave me, and thinking about that horrible experience brings tears to my eyes to this day. The things we witnessed and the experiences we endured have left us with mental scarring. I had problems defusing what I saw at Ground Zero, so I went to a trauma counselor for help. I was taught how to focus on this horrible event and the nightmares that plague me and make them turn out better and more acceptable in my imagination, but it took me a long time to learn how to do that. Like so many other First Responders, in addition to major respiratory problems, I suffer from PTSD (post-traumatic stress disorder). I pray that this PTSD will someday go away, but I don't know if it will.

In several spots we were working, the dog and I were inhaling a green smoke. Later, I heard that the green smoke came predominately from burning computer screens. With all the toxins and chemicals on that burning pile, we wonder what we have inside us at this point.

After we had worked at Ground Zero for several days, we were sent back to our job on the Marine Park Bridge. But me and several other guys kept going back to the Trade Center site at night. And of course, the cops and the firemen loved to have us ironworkers there, so they didn't stop us from going into the site. We would work next to guys who were getting paid because this was their job. We weren't getting paid; we were there as volunteers, utilizing our capacity as ironworkers to cut up the enormous iron beams and columns, all the massive structures that were still there.

I knew something was wrong with my health even while I was still working at the World Trade Center. I had what most doctors called a WTC cough. Sometimes I would cough up sputum that was grey and blackish. Sometimes there was even blood mixed in, depending upon how hard I was coughing or what I had been exposed to. I had no respiratory problems prior to 9/11; I could even run a mile in five minutes and thirty seconds when I was on my high school track team. Then, 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. My other health issues include gastroesophageal reflux, chronic sinusitis, chronic breathing problems, and an extreme sleep apnea. I was recently told that my labored breathing is caused not just by lung damage from all the toxins I was exposed to but also by the stomach acid that comes up in my throat and then gets inside my lungs. Given all these health problems, I don't know if I can ever hold any kind of a real job now.

I was in such good shape prior to 9/11. I could climb columns—that was part of my life when I was building skyscrapers. You have to have a high upper-body ratio to your mass weight to be able to pull yourself up a column and to do that continually, up repeated floors, and I had no problem doing that. Today I don't even think about going up the stairs that are set on a job site to get to the upper elevations.

Since 9/11, the smell of gasoline and diesel fuel bothers me so much that I don't 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. I would go from a sore throat to a chest infection and then some-times I would get pneumonia, and this had never ever happened to me before in my life.

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.

Before 9/11, I had an excellent job as a construction ironworker. It was challenging and kept my life interesting. You make an awful lot of friends as an ironworker, working outside with so many different trades. I made very decent money before I had to stop working in August of 2004. Now what I used to make in a day, I have to live on for a week. Currently, I'm only getting workers' compensation at $400 a week, which doesn't go very far. If my wife wasn't helping to support me, I honestly don't know what position I'd be in . . .



ORDERING BY MAIL

To order this DVD by mail, send a check for $20.00 plus
$3 for standard shipping & handling
or $5 for priority shipping & handling to:

MCS Information Exchange
PO Box 283
Topsham, ME 04086