Bobbie Lively-Diebold’s story appears in my 2008 book Amputated Lives: Coping with Chemical Sensitivity. I had the pleasure of meeting her and her husband when I showed one of my multiple-chemical-sensitivity documentaries at an MCS support group in Alexandria, Virginia. Part way through the film I noticed that Bobbie and her husband were slipping out of the meeting, so I went out into the hall to say good-bye to them. That’s when something unforgettable happened. When I shook hands with Bobbie, all of a sudden her hand clasped mine like a vise as she was struck by a neurological episode. To make matters worse, she was lurching about the small space in an uncontrollable way, pulling me along with her because I couldn’t get my hand free. That experience imprinted on my mind in an indelible way the reality of the neurological damage that occurs in so many cases of chemical sensitivity.
Bobbie’s story is an excellent example of why it is in the interest of a company or government agency to make whatever accommodations are reasonably possible in order to keep a good employee with invaluable years of experience on the job. Such employees are so happy that they can continue their career that they do everything possible to work effectively to help achieve their employer’s goals.
In 1985, I left my job at the United States Environmental Protection Agency in Region V, Chicago, and went to Washington, D.C., with my husband, a physicist who had just been hired by the Department of Energy. I found a new job in the Superfund program at the EPA headquarters, which was located in the Waterside Mall. This building had been constructed to be a shopping mall, not an office building, and the EPA leased it from a private company. There were still retail shops and restaurants on the first level, with the EPA offices on the upper floors and in an adjacent tower. The converted mall had many deficiencies. One major problem was that there were few windows in the building and those few did not open. In addition, the ventilation system did not operate properly because of its low air intake and poor air circulation.
After I had worked there for two years, the EPA began renovating an area of the building near where I worked. Walls were painted, new carpet was installed, and spaces were reconfigured with new furniture and space dividers for an open plan. Employees working in areas to be remodeled were moved to other areas, but many people had to keep working in areas close to where the renovation was taking place. The fumes from the various remodeling projects spread to these adjacent areas, and the ventilation system circulated them throughout the rest of the building.
Early in the morning on January 22, 1988, soon after the renovation had begun and the new carpet had been installed, I entered my office and smelled a strong, acrid chemical smell. Almost immediately, I began coughing and felt dizzy and nauseated. My breathing became labored, and my lungs started to hurt. In addition, I was disoriented and lost my voice. I left the office and remained outside until my head was clear enough that I could drive home.
After staying out of work for a few days, I felt somewhat better, and my supervisor, who was very supportive, arranged for me to work in various spaces in the Waterside Mall building that had not been remodeled. After a few hours in each of these spaces, however, I became ill and nauseated, could only speak in a very hoarse voice, and experienced mental confusion and lung pain. This was hardly surprising because the HVAC system was of course circulating air from the renovated portions of the mall to the non-renovated portions.
It was soon clear that I could not work in any space provided for me in the Waterside Mall. I was somewhat better at home on week-ends, however. An occupational health physician documented my condition as being work related, and I applied for workers’ compensation and received six weeks off through that program. After I spent six weeks at home, primarily in bed, some of my symptoms became less intense and my voice returned.
As the renovation continued and more new carpet was installed, more employees became ill. A number of affected employees got in touch with each other to compare symptoms and working conditions and formed an organization called the Committee of Poisoned Employees (COPE) that held weekly meetings. COPE members had a wide variety of professions and skills; the group included lawyers, toxicologists, analysts, public participation specialists, and regulators. EPA representatives of federal unions worked with COPE to inform other employees about the sick building problems at the Waterside Mall, various health symptoms that could be related to the renovation, and some steps that employees could take to avoid developing health problems. The union representatives also met with EPA building managers to obtain some relief, such as increasing air intake in the ventilation systems and providing safe work spaces for employees who had developed serious health problems.
Air quality tests by the EPA’s emergency response team found that the new carpet was out gassing a chemical called 4-phenylcyclohexane (4-PC). These fumes released by the carpet were a likely cause of various neurological problems, lung pain, confusion, nausea, and loss of memory among employees. In later tests of carpet fumes on rats that were performed by Dr. Rosalind Anderson of Anderson Laboratories, the rats exhibited problems similar to those of the EPA employees. Some rats in the test even died from exposure to the fumes from carpets.
While I was out on workers’ compensation, my program had been moved to another space in the Waterside Mall while our old space was being renovated. My occupational health doctor had advised my supervisor and other EPA officials that I could only work in a space where the air exchange was high enough to protect my health. Unfortunately, there wasn’t any place in the building where this amount of air flow could be provided. To keep my job, I had no choice but to return to work with my section. But as the days passed, I had increasing problems. It was clear that I was not going to be able to work in that atmosphere very long.
I returned from lunch one day to find that carpet was being installed in an area several hundred feet away from our section. Shortly after I entered the building, I had an even stronger attack than the one I had experienced in January. I gasped for breath, my lungs burned, my face turned bright red, my heart beat irregularly, I was confused and disoriented, and I couldn’t talk. Someone helped me to an elevator, and I stumbled outside the building. Unable to walk, I sat down on the ground next to a pillar in the rain. Some of the people who walked by asked me if something was wrong and if they could help me. I stayed in the rain for a long time too dazed to do or say anything. Somehow I managed to get home, and that was the last time I entered the Waterside Mall.
My occupational health doctor sent me to consult with some other doctors about some of my symptoms. I was told to avoid chemical exposures as much as possible; this seemed to be the only treatment available for my condition. Perfume and scented products made me violently ill. I could not pump gas for my car or do many of the tasks of everyday life that most people take for granted. Walking down the grocery aisle where soaps and cleaning products were displayed made me quite ill. My husband had to do most of the grocery shopping and all the vacuuming and cleaning at home. At this point, I was so fatigued that I stayed in bed except to go to the bathroom and to medical appointments. When I was in a car, I had to wear a respirator containing charcoal cartridges to protect myself from the traffic exhaust. I sometimes had episodes at a doctor’s office where exposures in that atmosphere would cause one of my arms to start shaking violently or I would become nauseated or feel very ill. Somewhere along the line, the folks in our COPE group did some research and found that there was a name for our condition–multiple chemical sensitivity (MCS).
I used all my sick leave and annual leave and then applied again for workers’ compensation and received it once again. After a year of being away from the Waterside Mall building, my health began to improve. Nevertheless, I was starting to have heart arrhythmias and would be sick for days or weeks whenever I was exposed to any type of volatile organic compounds (VOCs). Because of these reactions, I was quite isolated and usually saw only my husband, doctors, or other members of COPE. Occasionally, however, I would speak at an outdoor rally sponsored by the federal unions to bring pressure on EPA managers to provide better work conditions for all its employees, both well and sick.
Before long the press began to focus on how ironic it was that several hundred employees had become ill because of remodeling at the EPA, the very agency that was supposed to protect human health and the environment. Since I had no job to protect and there wasn’t much else that the EPA could do to me, I agreed to be interviewed by the Washington Post and the Washington Times. I also made television appearances on “Good Morning America,” “Larry King Live,” the “Today Show,” and “60 Minutes.” Most of these programs were shot inside or just outside my home because I couldn’t tolerate the exposures in TV studios. My goal in doing these interviews was to create awareness of the health problems, including MCS, caused by poor indoor air quality in sick buildings.
Meanwhile, the sick building problem continued at the EPA. The number of employees with health problems rose to at least three or four hundred. Once an employee became sick in an area, the EPA would move them out and move in a new employee without telling the new person about the reactions that some previous employees had experienced in this work setting. The new employees often developed chemical sensitivity in this situation, and the cycle continued.
For the first year after I left EPA, I lived at home in the one room that I could tolerate, which we closed off from the rest of the house. I used several air filters to clean the air, and we hired industrial hygienists to pinpoint chemicals and off-gassing in our house and make recommendations for improving our air quality. Eventually I was able to live in the whole house and sleep in our bedroom once again.
During my second year away from work, I kept urging the EPA management to allow me to work at home. I met the criteria for being handicapped and filed papers to be declared so. This allowed me to apply for reasonable accommodation under the Americans with Disabilities Act of 1990. I was told, however, that I could not work in my old job or any other job in Superfund since I would have to be in the building to do so. My résumé was circulated in the EPA’s Office of Emergency and Remedial Response, and because of my prior excellent work history, I was offered a job in the Oil Program, developing and revising regulations for oil spill protection.
I returned to work in the beginning of 1990. EPA had set up a supposedly “clean” office space in another building where affected employees could work. Unfortunately, after an hour or two in that space, I had reactions and could not work there, although some chemically sensitive employees were able to do so. My only chance to work safely was to work at home, so the EPA finally provided equipment for me to work from my home with phones, a computer, and contractor support.
My job was to oversee the development of regulations to implement “The Oil Pollution Act of 1990.” Once a week I met with my supervisor in a park outside EPA, and I kept in touch at other times by phone and computer. To minimize out-gassing, my branch chief provided me with a used computer and a printer with a typewriter ribbon, but I still had reactions to the computer. When I used it, my face would turn bright red and would burn and swell. For a number of months, I could avoid these reactions only by using a respirator when I worked on the computer. Even under these circumstances, I was able to accomplish a lot, and I participated in my supervisors’ weekly branch meetings by conference phone. I was thus able to keep up with other projects going on in my office as well as to share information about my work. My supervisors were pleased with my work, and the arrangement seemed to function to everyone’s advantage.
* * * * *
In 1992 our COPE group and the unions were approached by a law firm to discuss the possibility of the chemically injured employees suing the building management since those of us who had received workers’ compensation could not sue the EPA. The affected employees agreed to enter the suit with the law firm on a contingency basis. Based on a review of our health records, the law firm chose five of the most highly affected employees and one spouse to initiate the lawsuit against the owner of the Waterside Mall. Among other charges, the lawsuit stated that the Waterside Mall lacked sufficient ventilation to conform to minimum industry standards and that the building owner’s supervision of renovations at EPA Headquarters did not satisfy the applicable standard of care.
To get intensive medical examinations to document the extent of our injuries, the law firm sent us to a toxicologist, who tested us for many things, including oxygen flow to the brain, balance and inner ear problems, neurological damage, heart damage, and diminished concentration. My diagnosis from these and other tests was that I had toxic encephalopathy (a condition that occurs when there has been an alteration to the brain and central nervous system function as the result of exposure to various toxins). The tests also showed decreased oxygen flow to the thalamic area of my brain and provided evidence of both central and peripheral nervous system dysfunction.
Despite these tests, during our trial in the Superior Court of the District of Columbia, the jury refused to believe that four of the five of us were actually sick and considered our cases to be somatization. Nevertheless, they gave low monetary awards to all five of us EPA employees and the one spouse. The judge then tried to take away these monetary awards, but his decision was eventually overturned and our case was settled in 2001 on a confidential basis, almost a decade after it had begun.
While this legal battle was proceeding, I had to travel to various EPA regional offices in 1996 and 1997 to conduct Oil Facility Inspection Training that I was in charge of developing. I was usually gone for a week at a time. Although I was very careful about using an air filter in hotel rooms and in the training areas, as time went on I became sicker and extremely fatigued. I often had to work from my bed. My speech and movement problems occurred more frequently, as did shortness of breath and extreme fatigue. My chest inflammation continued, and nothing would reduce the pain. Walking up a flight of stairs left me breathless and unable to talk. I realized that my mental sharpness was slipping and I was having difficulty concentrating. I finally decided that I could not work any longer, and I retired in February of 1998. My supervisors and program were sad to see me go and told me that I managed to get more work done with fewer resources than anyone else.
Once I retired I had time to get medical help. I was referred to an electrocardiologist who was familiar with chronic fatigue syndrome and had worked with patients with MCS. After various tests, the cardiologist found that I had damage to my small-vessel vascular system that caused the vessels to leak fluid into the surrounding tissue. When I was exposed to chemicals or other triggers, my body would become inflamed. The inflammation caused my veins to contract and my red blood cells to stick together, which made my heart work overtime. When parts of my brain did not receive enough oxygen, my speech would slur and the left side of my body would shut down. My heart had enlarged from all the extra strain, and I had a left branch bundle block. My blood vessels would fluctuate widely from being dilated to constricted, and this would cause headaches and circulatory problems.
After my health was stabilized to some degree, my husband and I began hunting for a house located in the country. I needed better outdoor air quality and enough acreage so I would be more protected from my neighbors’ perfumed fabric softeners and wood smoke, as well as from auto exhaust. We searched for houses for a year but could not find a house that I was able to tolerate without becoming ill. Finally, we decided to build a “healthy house” that I could tolerate. We looked for months before we found a forty-seven-acre parcel in the Shenandoah Valley that we liked.
We hired an architect to design us a healthy house that used very few materials containing volatile organic compounds and included a state-of-the-art ventilation system. Our air exchange system recovers heat and cool air and recirculates all the air in the house to the outside every three hours. When we moved into the house in February of 2003, I did not have any problems from the new construction. If a neighbor is burning something outside, however, we turn off the air exchange system to avoid getting smoke into the house. During the four years we have lived in the house, my health has stabilized, although I still have severe reactions when subjected to an exposure while shopping or traveling. Once when a neighbor had his fields sprayed with herbicides, both the left and the right sides of my body shut down and I couldn’t talk normally for five days. I could not walk and had the too familiar pain, confusion, and other symptoms from this herbicide exposure.
I limit my trips from the house and stay inside when the air quality is bad. I am not always able to attend family functions such as weddings because of renovations in hotels and churches. Through all these problems, however, my husband has stood by my side and supported me both literally and figuratively. He helps with the work when I am unable to do it, and he has welcomed EPA friends who have come to our houses for meetings and dinners and sometimes to live with us until their health has improved. In spite of my disability and MCS, I am fortunate that I can now function in a somewhat normal, albeit limited, degree, I have the love and support of my family, and I have been able to retire and live in a house that protects my health.