Victoria Savini’s story of an unusual path to chemical and fragrance sensitivity

 

Victoria Savini’s story appeared in my 2008 book Amputated Lives: Coping with Chemical Sensitivity.

In October of 2001, the Hart Senate Office Building was contaminated by mail containing anthrax spores that was sent to two senators. During this time, I was working as an Accounts Payable Specialist in the Disbursing Office. Of course, the building was quickly shut down, and three weeks later we moved to offices in the Postal Square Building.

Since all the mail was potentially tainted, an irradiation process was begun to kill any spores that could be contained in envelopes in the future. This resulted in “over cooking,” which made the paper turn to a yellow/brown color and made the pages of letters stick together. The fumes that remained from the process were enough to cause my eyes to water at times.

When I began getting sick that fall, the first thing I noticed was that my hands began to swell and become very painful. I started to think I was getting arthritis or something, however, so I didn’t make a connection to the irradiated mail.

In January of 2002, we moved back into the Hart Building. The cleanup for any possible anthrax spores had been completed, and the whole building smelled like chlorine in a swimming pool. Upon returning to the Hart, I began having headaches and severe joint pain. My wrists were hurting so badly I couldn’t even lay my hands flat on a table or put any pressure on them at all. When I went to my doctor, I asked him if I might have carpal tunnel syndrome. But since I had problems with my knees and hips and even my toe joints, he thought it might be rheumatoid arthritis, so he sent me to a rheumatologist. My hands at this point were very swollen, and I was missing work here and there because some days I couldn’t close my hands to button my clothing and get dressed.

After a thorough examination and x-rays, the rheumatologist told me that she didn’t know what was wrong with me but it wasn’t rheumatoid arthritis. I returned to work in pain and just kept taking over-the-counter pain medications.

On March 27, 2002, I was working on vouchers and breathed in some unusual fumes from the paper. I felt an odd sensation in my nostrils and then in my throat. I began coughing, and within minutes I completely lost my voice and began having difficulty breathing. I went to the Hart Health Unit, where I was put on oxygen and the paramedics came in along with the Senate’s attending physician. They couldn’t figure out what had happened and treated me as if it were asthma. The doctor gave me an inhaler to use, and the nurse on duty advised me not to return to work because if there was something in the office causing this reaction, it would happen again.

The next day I visited an emergency care doctor who prescribed Prednisone, Volmax, and two additional inhalers. He also administered a breathing treatment to alleviate any potential restriction in my lungs or throat. At this point I began working closely with workers’ compensation. The woman there was extremely helpful to me. She understood how sick I was and told me that there were other people suffering the way I was.

On April 1, 2002, I returned to work after a few days absence.  I began coughing within minutes of coming into my office cubicle, and once again I lost my voice. Despite this reaction, I struggled through the day, hoping my coughing fit would cease. That never happened.

On the following morning, the coughing began again immediately after I entered the office.  My supervisor told me to go get something to drink, and he thoroughly cleaned and wiped down my workspace from top to bottom. Despite his best efforts, this did not help, and I ended up being sent home by the nurse again. This scenario continued for the coming days. I would report to work, get sick, and then be ordered home by the nurse. During this time, my headaches began to worsen, as well as my joint pain, voice loss, nausea, memory loss, and acid reflux.

On April 7, 2002, the disbursing office decided to move me into another room with a different ventilation system. We were all hoping that would be the “fix” to my dilemma. What no one thought about was that the room they put me in was piled with boxes of irradiated paper. I experienced constant coughing and discomfort in that room, the only difference being that I began coughing even before I started working with the vouchers. No wonder, with all the irradiated paper that was stored in that room.

During this period, I saw two internists; an allergist; an ear, nose, and throat specialist; and a gastroenterologist for my acid reflux. I was tested twice for allergies, and in both instances, the results showed that I was not allergic to any of the common substances that could bring about the kind of reaction that I had been experiencing. The gastroenterologist performed an endoscopy and found that my esophagus had been burned. He said I was fluxing but showed no signs of acid reflux disease and that chemical exposure should be explored. All the doctors concluded the same thing: some type of irritant in the Hart Building was affecting me and I would probably have to eventually leave my job.

Since the experiment of moving me to another room in the Hart Building had not worked, my supervisor decided that I should try working on the vouchers in a room in the Capitol Building to see if I could tolerate working with the vouchers in a different building. But within half an hour of working with the vouchers in this new space, I was coughing and getting a raspy throat. By the time an hour had passed, I had no voice at all and I was feeling nauseated and shaky. I called my doctor’s office, and he said I should not to leave the building because I might pass out. He told me to see the attending physician on Capitol Hill, but the only thing that doctor told me was to avoid whatever was causing these episodes. So I gathered up the vouchers and returned to the Hart Building. As I was walking back, I realized that the vouchers were not making me cough even though I was holding them. I realized then that it was handling the irradiated paper in an enclosed environment that was the cause of these episodes and the other symptoms I was experiencing only while at work.

I reported my observations to Human Resources and the Financial Clerk of the Senate, telling them that I probably could handle irradiated paper as long as I was near a window or somewhere with proper ventilation. My walk back to the Hart Building while I was holding those vouchers and not coughing seemed to prove it. I asked to be allowed to work outside as an experiment to see if my theory was correct but was told I couldn’t. I then asked once again to be moved to a place with proper ventilation, but the Financial Clerk of the Senate refused my request, saying, “I’ll never allow it.” When I asked why, he said that if he did it for me, he would have to do it for anyone else in the office who complained, so he would never allow it to happen.

Human Resources in the meantime seemed to be trying to make a case against me. They sent e-mails to my supervisor asking him how many minutes a day I was away from my desk. I knew that they could only let me go if I didn’t carry my work load, so it was obvious what was happening. I was facing either being fired or being forced to resign. When I went to workers’ compensation for help, I found that my case had been reassigned to a new caseworker who was inexperienced and the original caseworker had been instructed not to speak with me. I knew this was because Human Resources realized she was giving me information that they didn’t want me to have.

When I told the new caseworker that I was worried about losing my job because I had two kids in college and my job covered their costs, she said, “What makes you different than anyone else? Just take out loans like the rest of us do.” It was clear she was not in my corner and I was basically on my own.

At this time, I was surfing the Internet to find out anything I could about sick building syndrome and irradiated paper. In my search, I found out about a chemical sensitivity conference being held in a Washington suburb, which I quickly registered for and attended. There I met a toxicologist who specializes in chemically induced illnesses and explained to her what was happening to me. She said, “You  must leave your job before you get any worse, or it could be too late.” Since my voice was still disappearing at work and my other symptoms were getting worse, I realized she was right and I handed in my resignation. I later found out that several unpaid interns had been experiencing the same breathing problems. Since they were unpaid, they just decided to leave rather than fight. I know I was not the only one having problems with the irradiated paper, although the Senate contended that I was.

A year later I saw a news report that described the symptoms being experienced by the people who had been taking antibiotics because they had been exposed to anthrax spores. They had the same symptoms I had but were blaming it on the antibiotics.  Since I did not test positive for anthrax exposure, I never took the antibiotic that was offered to me, yet I had the same symptoms as the people who had taken the antibiotics. That’s why I believe that it was a combination of the irradiated mail and the fumigation of the Hart Building that was causing these problems.

To this day, I remain hypersensitive to certain substances. I can’t even go near a store aisle containing fertilizer or pesticides. Things like perfume or construction odors cause me to develop throat irritation and to cough and lose my voice. Even the smell that is emitted from my car air conditioner and car heater sets me off. The fumes from the fuel on an airplane produce the same problem. I used to be able to fly without any problem, but now I cough and get a raspy voice while on a trip. I never know when some exposure will cause me to start coughing and lose my voice. My hope is that one day the Senate will realize what happened and either stop irradiating the mail or get proper ventilation in these enclosed offices.

When I was hired for my new job at the Woodrow Wilson Inter-national Center for Scholars, they made sure I had whatever accommodations they could manage. They changed the post office that their mail went through before I ever got there because some of their other employees were having problems too.

The accommodations they implemented to make it possible for me to work included the following:

  1) If anything irradiated made it through to the office, it would be photocopied for me so I wouldn’t have to touch the original.

  2) One day there was a construction project going on in the building, and immediately after I arrived at my office, my throat closed up, I started coughing, and I lost my voice.  My supervisors called a cleaning crew immediately and allowed me to go outside until all the dust from the sheet-rock was cleaned up.

  3) Management also gave me a large air filter to keep in my office, which works very well.

  4) I always have fair warning if carpets are going to be replaced or special cleaning products are going to be used. My boss will stop by my office and tell me to close the door. If I have any breathing problems, I’m allowed to just go outside without telling anyone because my boss doesn’t want me to feel sick.

  5) It is understood that if there is a prolonged construction project that affects me adversely, they will provide me with a laptop to work from home.

The most important thing of all is that my superiors believed me when I said I had a problem with certain chemical exposures. They were willing to work with me in any way they could to enable me to continue working. This I consider to be the biggest accommodation any employer could give.

Because of these simple accommodations that my employer provides, I am able to keep working. It’s so important for other employers, including the federal government, to realize that people like me can be extremely productive in a job if the employer is willing to do some simple things that allow us to continue working instead of treating us as though we are the ones at fault.

*        *        *        *        *        *

Alison Johnson’s addendum: The following statement regarding the irradiation of mail received by members of Congress originally appeared in a newsletter issue I published in early 2002, 

While in Washington to attend a Gulf War syndrome hearing, I talked with staff members in several offices on Capitol Hill.  In one office a staff member told me that whenever the young woman whose job it was to open the mail bag every day did so, the fumes emanating from the bag would make her feel nauseated. Moreover, the irradiation process had caused many pieces of mail to virtually disintegrate around the edges.  The staff member showed me some of the mail they had received, and it was indeed startling to see what a strong effect the irradiation had had upon the paper, making it brittle.  I was definitely left with the impression that this was not a benign process.

Fortunately, at this point only mail headed for certain zip codes in Washington is irradiated, so the average person with MCS runs only a tiny risk of being exposed to irradiated mail.

A February 11, 2002, article in the New York Times noted that 72 Senate staff members and at least one senator working in the Hart Senate Office Building had experienced symptoms like “nausea, headaches, rashes and nosebleeds,” symptoms that they thought might be related to the irradiation of the mail.  In a statement that seems hardly reassuring, the Times noted: “The postal service has said the irradiation process . . . poses no risk to human health . . . and that the mail is now aired out before delivery to dissipate toxic gases that the radiation might have produced.”

The Washington Post published an article on February 7, 2002, that cited both irradiation of the mail and also the fumigation of the Hart Senate Office Building as a cause for health problems among congressional staff members.  According to the Post article, “Sen. Arlen Specter (R-Pa..) said yesterday that 16 employees in his office have complained of headaches, burning eyes and breathing problems from a ‘very heavy odor’ of chlorine, which was used to fumigate portions of the building.” 

The gas used to fumigate the Hart Building was actually chlorine dioxide.  When I spent a couple of hours in the building on January 25, 2002, visiting Senate staffers in charge of health issues, the smell was still readily apparent, even though the fumigation had taken place weeks before.  When I commented on the odor to a secretary, she remarked that everyone thought the place smelled like a swimming pool.  It may have been a coincidence, but within a few hours after leaving the building I had a bad sore throat that lasted for a couple of days, which is a rare occurrence for me. 

It is hardly reassuring that the New York Times article noted that the EPA was running tests every day and these tests “have shown gas levels to be well within the limits considered safe.” .

*        *        *        *        *        *

I happened to meet Victoria Savini at a national MCS conference held in a Virginia suburb of Washington not long after she was sickened by exposure to the chemicals used in the Hart Senate Office Building cleanup and the chemicals given off by the irradiated mail. During the Q&A period following a panel discussion of some leading physicians treating chemically sensitive people, Victoria went to the mike and described the problems she was having with the irradiated mail to which she was exposed. To my dismay I heard Dr. William Rea and Dr. Al Johnson tell her that she was undoubtedly sensitive at that point to all printed paper products and that avoiding irradiated mail was not sufficient and she should not try to work in an office job that involved handling printed material period. After those doctors made those pronouncements, I went to the mike and recounted the experience I described above about recently talking to a congressional staffer who got nauseated every morning when she opened the mail bag. The physicians ignored that information and stuck to their position.

During the intermission, I talked to Victoria out in the hall, and she was almost in tears because the physicians had insisted that they knew better than she did what was making her sick at that point. I would urge any physicians treating people with MCS to listen carefully to what their patient is saying because that patient is the one with the daily experience of what they are exposed to and what they react to. In general I think health care providers should be careful about assuring a patient that they are reacting to something when the patient says they are not. Many years ago I had contact with a couple of MCS patients who told me they went so far as to remove the labels from canned goods they kept in their house because some healthcare provider had led them to believe that they were reacting to a very tiny exposure like that. (Can labels, unlike newspapers and magazines, have been aired out for a long while before they end up in someone’s cupboard.)

The late Gerald Ross, MD, who appeared in my early documentaries, once told me that he thought misattribution was a frequent problem among the chemically sensitive, i.e., that people are sometimes sure one thing is making them sick when it is actually something else they have inhaled or touched or eaten.