Rachel Hughes’s story appeared in my 2008 book Amputated Lives: Coping with Chemical Sensitivity. Like virtually everyone else who became sick from 9/11 toxic exposures, she developed sensitivity to fragrances and a wide range of other chemical exposures. And like many others who became sick from those 9/11 exposures, Rachel found it difficult to find a physician who took the sharp decline in her health seriously and didn’t simply attribute it to stress.
After the terrorist attacks on the World Trade Center, I wanted to do something to help, so on September 12, I volunteered to help unload trucks and pass out sandwiches and water to rescue workers. At the time, I was only thirty-five and was in excellent health. I didn’t realize that my volunteer work at Ground Zero might jeopardize my health for the rest of my life.
Within days of the 9/11 attacks, I had a fever and a constant head-ache; I was also vomiting and feeling dizzy. A bad cough made it hard for me to sleep. I was also having trouble breathing and had considerable chest pain and tightness. One of my worst problems was that large, unsightly sores started erupting on my scalp, face, neck, arms, and back.
About a week after 9/11, I returned to work at my office, which was located about eight blocks north of the Trade Towers. In my director’s job in a multimedia company, I managed hundreds of employees and projects. When we returned to work, there was still thick dust all over our office, so we had to help clean our work spaces ourselves. I wore a surgical mask to work for several weeks because the air smelled horrible and was so thick with dust that it was hard to breathe, despite the assurances from the head of the EPA that the air was safe to breathe. I hoped the mask would help lessen my cough, but it didn’t. Even three months later the smoke in the area still made my eyes sting. Despite all the smoke and dust and fumes, I continued to work full-time in Lower Manhattan until I was laid off in December 2001 because of the negative effect 9/11 had on business.
My health problems related to the 9/11 toxic exposures have steadily worsened. I frequently have pneumonia or bronchitis, and this can mean that I have to rest in bed and not work for months at a time. Even then I feel only slightly better. In the seven years since 9/11, I have not had one day when I have felt healthy and energetic the way I used to feel. Daily headaches are a problem, and I continue to have constant chest pain, pressure, and shortness of breath with the slightest exertion. My diagnoses include lung scarring. A night cough that is only alleviated by sitting upright makes sleeping extremely difficult. For months at a time, I run low grade fevers and have swollen, painful lymph glands in my neck and other areas. I have muscle and joint pain, prickly numbness in my legs and arms and across my back, and fatigue so intense that it makes it difficult to even take a shower without needing to rest afterward. Simple household tasks like doing the laundry or grocery shopping are exhausting.
During the first couple of years of my 9/11-related illness, I was misdiagnosed by my doctor, who told me that all these symptoms were the result of stress. One doctor I consulted told me I was becoming a hypochondriac. For a few years, I did what those doctors said. I ignored my symptoms and attempted to work. I also pushed myself at the gym to do yoga as I had done before 9/11. But things just worsened with this exercise regimen, and I was having trouble making it through a day.
My situation during this time was particularly difficult because my doctor was not running any tests or diagnosing me with anything other than stress. Hence for a few years I kept my symptoms and illness a secret from most of my friends, family, and co-workers. I began to do less and less, however, because I didn’t feel like being around people when I was feeling ill and couldn’t explain to them what was going on. Finally, three years after 9/11, I began telling people that I had been sick and had been pretending earlier that I was going to work when I was too sick to leave my home and had to spend much of the day in bed. Because I have not been able to work for years, I have now spent all my savings, have had to sell my car and my home, and can no longer afford to rent my painting studio. Now I’m $100,000 in debt to family and friends and facing bankruptcy because of medical bills.
By the spring of 2004, I realized I needed to find a doctor who had experience dealing with patients with my range of symptoms so that I could find out what was causing them. I was diagnosed with chronic fatigue syndrome and fibromyalgia in 2004. By early 2005, physicians in the Mount Sinai WTC Medical Monitoring Program diagnosed me as having immune system dysfunction, chemical asthma, gastrointestinal disorders and sinusitis. In addition, tests by other doctors showed that my thyroid and adrenal glands were not working right and that I have high levels of mercury, lead, and other toxic chemicals in my body.
Chemical sensitivity became a significant problem for me after my exposure to 9/11 toxins. Since that point, I have become sensitive to all types of chemical fumes that never gave me any problems before. I have had to stop wearing perfume and start using unscented body lotion and shampoo. The chemicals like ammonia or solvents that they use to clean the elevator or halls in my building make it difficult for me to breathe and sometimes give me a migraine. I actually try to hold my breath in the elevator because the cleaning products affect me so strongly.
I have always been a dedicated artist, but I can’t paint right now because I’m too sensitive to the paint, even water-based paint. I’m too sensitive to markers to use them for illustration and drawing. The room in my apartment where I used to do art work after I could no longer afford to rent my art studio has turned into a medical billing station containing files of medical and insurance records.
In September 2004, I did a five-week round of chelation therapy for the metals poisoning, but it did not work as promised. In December 2004, I ended up in the hospital twice because of repeated fainting spells, trouble breathing, and severe exhaustion. I was told I had low blood pressure and was put on oxygen. Later I found out that my adrenal glands were so low functioning that my blood pressure had dropped to 80/40; it was normally 120/80. I was told the chelation treatments would get me back to normal. Instead, I felt worse because of complications with my weakened immune system, kidneys, and liver.
Pulmonary tests in the official WTC monitoring program at Mount Sinai Hospital in NYC have shown that my lungs are functioning at thirty percent below normal capacity. If I breathe too deep, I get a pinching pain in my chest. Other symptoms that no doctor has been able to explain are that my teeth and gums hurt a lot, my eyes hurt, and I still have severe eruptions of sores over my scalp, neck, back, shoulders, and face. In January 2006, I had forty percent of my hair fall out in clumps because of a prescription drug interaction.
Anyone who has met me since my exposure to the 9/11 toxic dust and fumes has only gotten a glimpse of who I am. I hope that I can someday work at my job again and return to volunteering as a teaching artist working with kids in art education programs in the New York City schools. The ‘‘real me’’ is not here right now because the ‘‘real me’’ is someone with energy and the ability to sleep well and work full-time. The “real me” loved to go to art galleries, attend jazz concerts and the theater; the “real me” enjoyed hitting the gym five days a week, doing daily yoga, spending time with friends and visiting family. I hope my good health will return so I can once more engage in all the things I loved in life.