But despite all my medical problems, I kept trying to find a job. At last I landed a job as a computer network administrator in the university medical center’s operating rooms. I was responsible for thirty-five operating rooms, their computers, and all the other networked computers in one of the largest trauma operating suites in the area. Many times I would be paged when an emergency arose with a computer in one of the operating rooms.
As I worked in the operating rooms, however, I got sicker and sicker. I had episodes of vomiting and started having daily asthma problems again. Often as I was walking down a hallway in the hospital, it would seem as if the floor was rolling up in front of me. This was more than dizziness, it was really bizarre. Later I learned it was a neurological disorder and was causing me severe vertigo.
Because I had been unemployed for fourteen months before I started the operating room job, I had been forced into bankruptcy, although my debts were small. On top of that, my attorneys were busy with a lawsuit against my previous employer. My deposition in August 1996, which lasted eight hours, was an experience I would rather forget. A month later, three days before the jury trial, the judge handed down a summary judgment against me. A year later our appeal was rejected. My former employer was one of the most powerful companies in the state, so perhaps that explains the outcome.
It’s hardly surprising I was having horrendous health problems. The exposures I encountered while working at the first company were bad enough. Then when I worked for eighteen months in the operating rooms of the university medical center, I headed straight into severe multiple chemical sensitivity. Ask any knowledgeable physician what chemicals you are exposed to in an operating room. The anesthesia is just the bare bones. On top of that, there is heavy use of cleaning products and disinfectants.
Nevertheless, within my growing team of physicians at the university medical center, my endocrinologist was the only one who seemed to have a clue about what was causing my problems. He said I should get out of the operating rooms. I took his advice and left the operating rooms in January 1997, requesting a transfer to a different job in the medical center.
By the end of March 1997, I was rehired by the university to work in its primary center for conducting clinical trials, especially in the area of cardiology, which I thought would be interesting. Everything seemed to be going along pretty well for the first month, until the end of April, when they moved me into another building, which was very smelly. Quite a few people had complained about the air quality there. It didn’t take long before I again was having late-day asthma attacks.
On a Friday evening in late May, I arrived home exhausted and did a number of nebulizer treatments for my asthma problems. Then I fell asleep on the couch. About 1 am I woke up on the couch with an awful burning in my chest. By 3 am, I was still in a lot of distress, so I went to the emergency room. There they gave me a medication that caused the burning sensation to dissipate pretty quickly. Then they hooked me up to the EKG machine. My EKG was normal. They did some blood work anyhow and kept me lying there for over an hour. Then the resident came in. He told me the blood work didn’t look good, and some heart-related enzymes were a bit high. They did some more blood work. An hour later the resident told me I had suffered a heart attack. To say I was in shock is an understatement. They rushed me upstairs to the cardiac unit. I called my parents, who had moved here from Boston in October 1996 because of my chronic illness.
When my internist arrived, he paged my allergist, who soon appeared. They were both shocked that I had had a heart attack because I didn’t at all fit the profile for someone who would be likely to have one. No heart disease in my family.
The director of the cardiac unit turned out to be a super doctor, and they did a zillion tests on me in the cardiac unit. After some exploratory poking around, they decided I needed an angioplasty. That was to be done the next morning. But the wild thing is that when the cardiac surgeon went in endoscopically to do the angioplasty, the blockage, or what had looked like a blockage, had disappeared. The surgeon was ecstatic. No angioplasty needed. They concluded that I had experienced a severe cardiovascular spasm. I did not have coronary heart disease, as it is traditionally understood. Nevertheless, the spasm had been potent enough to destroy 25% of my heart muscle, so six months of cardiac rehab ensued.
Finally, at the end of July, I returned to work, and the late day asthma attacks started again. Sometime In August, I had my first follow-up appointment with my cardiologist. I remember lying on his examination table while everything seemed fine. Then within minutes I started getting horrendous pains. Within a couple of minutes I was hooked up again to the machine, and my cardiologist was reading my EKG. He told me I was having an eschemia attack. Lack of oxygen. More heart muscle spasms. I was sent off in the ambulance to spend a night in the chest pain unit.
My cardioligist made some very astute observations. He noted that the same chemical exposures that seemed to trigger my asthma attacks, which were bronchial spasms, also triggered cardiac muscle spasms. It seems ironic that my work for a division of cardiology exposed me constantly to chemicals that triggered cardiovascular spasms.
By the middle of October, as the asthma attacks and the angina attacks continued, my doctors agreed I should not return to that building. I was then fired on the grounds that I could no longer do my job. Finally, in March 1998, under threats of public exposure by my family, my employers backed down on their refusal to allow me to telecommute. I was assigned to another position as a technical writer and allowed to work from home. To this day, the entire department admits no one on the team is more productive than I am.
In the meantime, my sinus disease had worsened considerably. One day I had a severe shooting pain through the right side of my face and raced off yet again to the emergency room, where I had a CT scan. A few days later I had an appointment with an ENT surgeon, who pointed out clearly the bone erosion in my skull and told me that down the road I could be highly susceptible to getting meningitis. That fact alone made me decide to go ahead with the sinus surgery.
I had the surgery in June. I got incredibly well accommodated for an MCS patient at a hospital that doesn’t think such an illness exists. (This accommodation resulted because I hooked up with a patient care person who was very interested personally in MCS. She arranged the special room and everything.) At any rate, the surgery was a great success, although it was over three hours long. My surgeon said he had never seen a worse case than mine.
Unfortunately, after the surgery my MCS symptoms became severe. (They had subsided considerably in the preceding months because I was working at home and avoiding exposure to workplace chemicals.) Although I had been a great athlete and a dancer, now I was falling down everywhere. I didn’t trip over things, I just fell without warning. All of a sudden, I had constant chills, out-of-control asthma, irritable bowel syndrome, a strange metallic taste in my mouth, vertigo, complete short-term memory loss, and about ten other symptoms.
I finally made an appointment with a physician who is one of the leading researchers in MCS in the country and is particularly interested in reactive airway disease. I have been very impressed with his grasp of chemical sensitivity—he was the one who pointed out that the anesthesia I had been given for the nasal surgery had undoubtedly greatly exacerbated my chemical sensitivity. I also have recently found a local physician who specializes in the practice of environmental medicine, and he too is very knowledgeable about MCS.
Although I am glad to have found physicians who understand chemical injury, my parents and I remain desperate about my future. They are getting on in years and can afford to give me little financial assistance. I don’t know how they can stand to see their only child, who had achieved so much, now losing everything. Any chronic illness is bad, no way around that one. But when such debilitating illness results from the ignorance, the complete and utter lack of human caring that my former and current employers displayed, it truly is criminal.
I remember when I met my new attorney in December 1998, I asked him what they pay someone who loses a limb on the job. He told me. Then I asked him what they do for someone with an amputated life.
Sometimes I still just want to slug those people who did this to me. So far, I still have not obtained justice for the wrong, the terrible wrong done to me. I have a badly damaged immune system, as tests have proven. I have organ damage to my heart, gastrointestinal system, respiratory system, and skeletal system. I have permanent vision problems. I still live like a hermit to a large extent—I have no social life except in cyberspace, and I no longer have a career after twenty-five years of hard work. And I am no kid, being in my early fifties. What can I expect from life at this point? What will I do when my parents are no longer here? These are thoughts that sometimes haunt me and terrify me.
All I can do is try to not allow the terrible rage inside eat me up alive. So what I try to do, sometimes well, and sometimes not so well, is to use this rage like kindling to fuel a new direction. It’s certainly not a path I planned or dreamed about. Where this effort will lead I don’t know. That’s the next chapter.