This is the first half of Lizbeth’s story, as it appeared in my 1999 book Casualties of Progress: Personal Histories from the Chemically Sensitive.
This is so very tough, talking about the nightmare that started almost six years ago. Every time I start to think about it, talk about it with someone, I get so very angry, so angry that I could put my fist through the ceiling.
I have thought about this anger a lot lately. Mostly because it has stopped me from telling my MCS story. And I guess, depending on the day you talk to me about it, that day will measure the degree of fury you have to deal with when talking with me. I know from hearing their stories that some people actually develop MCS just going through normal, everyday life. But in my case, someone did this to me. And they knew they were doing it too.
So here goes the fist through the ceiling . . .
My problems started on November 3, 1993. I will never forget that Monday, the last normal Monday of my life. The large company where I was employed as a computer specialist moved my work unit to a renovated space in a building called the Data Center.
This Data Center didn’t look too bad on the outside; it was a one-story brick building. But after you open the front door and go through the small lobby, you just are hit by the darkness of the place. I remember walking down the long corridor through a couple of sets of security doors. Then, on the left, another set of heavy doors.
As I walked through the last set of heavy doors on November 3, I was struck by the sheer ugliness of the place. They had laid down dark, new industrial carpeting. There was a narrow walkway between two long rows of cubicles with new particleboard dividers. To our right were all the mainframe computers.The walls had just been painted a dark burgundy. And the air was heavy, really heavy feeling. There wasn’t a single window.
By the end of the first week, on top of the place really smelling strange, two of my coworkers and I had odd feelings in our throats. For want of a better description, it was like having fur balls in your throat. My throat kind of scratched and hurt; it felt like there was something there, even though there wasn’t.
Within ten days after I entered the new workplace, I started hacking late one afternoon. Not really coughing, but what I later learned is called wheezing. My workmates weren’t doing too well either. A lot of them were having a variety of classic allergic reactions like sneezing, running eyes, and itching. I had also suddenly developed this prominent rash on my elbows and knees that got so bad it resembled eczema.
By the time I got home about 5:30 pm, I was hacking so badly I had to hold onto the kitchen counter to keep from falling on the floor. I had so much trouble breathing I was scared shitless. About forty minutes passed, and all this craziness subsided. But the next day, the same thing happened, and the next day and so on, Monday through Friday. By Friday I was a wreck.
I kept working, but the first week of December, I called a doctor I had seen a few years ago. (I used to be the kind of person who saw a doctor once every ten years or so.) Anyhow, they had me see the physician’s assistant, who checked me over carefully. When I told him the details of when all this had started, his immediate reaction was that I was having problems caused by the renovated workspace. He said I had bronchial asthma and put me on Prednisone for ten days. Wow! I felt so much better I thought I was cured. How little did I know!
By the time I was off this steroid, I went home to Boston for a couple of weeks for the holidays. After I started working again in mid-January 1994, I was in worse shape than ever. The late-day attacks were getting so severe that my sides were killing me; it felt like my diaphragm was going to explode. Unfortunately, I waited until mid-February to call the doctor again because I was so unaccustomed to calling doctors. I had always been a fit, well person, very athletic. I wasn’t accustomed to complaining about my health.
So I called my office to say I was sick on February 14, 1994. I called the doctor’s office and explained to the nurse that by this point I wasn’t recovering at all on weekends from the workday agonies of hacking and wheezing and was barely breathing by the end of each day. I told her that at the moment I was in so much pain that I could only move very slowly. The nurse consulted with the chief doctor and then told me to come in as quickly as I could. She said one of the doctors would wait there for me through lunchtime if necessary.
The internist I saw diagnosed me with occupational asthma. He put me on Prednisone again and tried to convince me to quit my job. He wrote to my employer to ask them to move me to a different location and had me document my asthma attacks in great detail. He said the late-day attacks were typical of classic occupational asthma, but he didn’t know exactly what substance was causing them.
The only reaction to my internist’s diagnosis that I got from my company was a stern warning from my supervisor to keep my mouth shut: “We wouldn’t want any other departments here to think there really was something wrong with the environment, now, would we?”
This routine of work and continuing asthma attacks went on and on until May 4, 1994. On that day my supervisor blew up at me and then fired me. I know I was fired because I continued to complain about the workplace environment. That seemed pretty clear because I was the lead person in the unit and was popular with my clients.
After I had been away from my workplace environment for a few weeks, I started feeling pretty good. I hadn’t had any asthma problems since being fired. I had, however, had problems a couple of times in a parking lot when it was very hot because for the first time in my life, I was really aware of the odor of petroleum. When I encountered heavy amounts, it was like being zapped in the brain. Years later I learned that people with MCS call this brain fog.
One day at the end of June 1994, I took a walk around the lake behind my apartment complex. It happened to be a very windy day, and there was a constant cloud of debris in the air from the new apartment buildings that were going up right next to my complex. By the time I got back to my apartment, I wasn’t breathing well. Then suddenly my breathing got so bad that I was very frightened. I managed to get to my front door and call to my downstairs neighbor, who was outside. He came up and called an ambulance and stayed with me until they came.
First the fire engine arrived, and they tried to give me oxygen. That didn’t help. When a person has an asthma attack, they cannot take in oxygen because they cannot expel the carbon dioxide from their lungs. It makes sense now, but then I was just terrified.
The EMTs arrived pretty quickly. They put me on a nebulizer and took me off in the ambulance to a hospital. This was my first time in an ambulance. First time having an IV stuck into me. First time in the emergency room. First time overnight in the hospital. Lots of firsts. You should see my arms now—three dozen IV scars.
After my doctor examined me the next morning, I went home on a huge dose of Prednisone. Talk about the jitters—I was so fired up, I couldn’t sleep for three days. I redecorated my entire apartment.
Between October 1994 and the fall of 1996, this kind of episode occurred over a dozen times. Twice, both times in March 1995, I went into anaphylactic shock. I didn’t even hear the ambulance sirens because I was unconscious. The first time I almost died.
In January 1995, I started seeing an allergist at the university medical center who was supposed to know something about what I had learned was called multiple chemical sensitivity. (I later found out that he considered MCS to be psychosomatic.) He was also supposed to be an asthma expert, but by then I was having other problems in addition to the asthma. My cast iron stomach was betraying me, and I started having episodes of terrible burning in my chest that seemed to exacerbate my asthma attacks. Also, for the first time in my life, I had developed really bad sinus problems. My sinuses would sometimes burn, especially when I was in grocery stores, and I started having some yellowish discharge. On top of this, I had a couple of bizarre incidents in grocery stores when my vision would suddenly go. It was as though there were kaleidoscopes in my eyes. [Note from Alison Johnson: Like so many chemically sensitive people, Lizbeth was almost certainly reacting to the detergents and fabric softeners in the laundry aisle.]
My allergist diagnosed me with gastroesophageal reflux disease and prescribed medications for that. He also started treating my serious sinus infection with antibiotics. It was hard for me to pay for all my medications because I was still on COBRA for health insurance, not yet having been able to find a new job, despite dozens of interviews. I think word had gotten around that I was someone who would react to poor air quality in the workplace and complain about it.
So there I was with all this medication and no job, and very little money available for food. At the end of February 1995, I had more sinus problems. My allergist was out of town, and the doctor covering his patients put me on amoxicillin. Each day that I took this medication my chest tightened up more and more. By the night of March 2, I knew I had to go to the emergency room, so I put on my coat and walked out my front door. Thirty seconds out the door, I turned around and came back inside. I was well schooled in trouble by then. The room started to whirl, but I managed to grab the cordless phone as I hit the floor. Five minutes after the EMTs arrived, I was unconscious.
Later I learned I had stopped breathing, was turning blue, and had almost died. The next day my allergist had me transferred to the university medical center by late afternoon, and I spent two more nights there.
During that same month, I had an anaphylactic reaction to aspirin. I had rarely gotten headaches or other aches and pains before my current health problems started, so I had only taken an aspirin maybe half a dozen times per year. What I didn’t realize at that point was that my whole body chemistry had changed and I had been damaged by chemicals. So one more round of anaphylaxis, the ambulance, and the emergency room.
To be continued in the next post.