My Name is Donna S., and this is my story:

In June, 1994, My co-workers and I were exposed to toxic chemicals at work during a building renovation.

They were tearing up old, glued-down carpeting and throwing it against the wall outside my cubicle. The “cloud” of particulates was so thick, that we all were choking and our eyes were burning.Our skin even felt like it was burning. The “cloud” was worse than a fog, and we could barely see each other through it.

My eyes swelled bigger than golf balls, and I could not see. The pain in my eyes, sinuses, and ears was terrible. I was forced to be exposed 11 times in 6months. Each time, my eyes would swell SHUT so I was blind. I would wheeze and cough so hard that I would soil myself and vomit. My ribs are constantly painful from the constant coughing. The Doctors gave me cortisone drops for the pain & swelling in my eyes, benzocaine drops for the pain in my ears, pain medication for the constant sinus and headaches, prednisone for the blisters that rose all over my skin, and all kinds of breathing apparatus and inhalers.  I spent weeks in bed on pain medication with ice packs on my eyes to reduce the swelling. It is so frightening to be “blind”.

Upon my forced return to work after each exposure, I would cry while driving to work because I knew I would have to go through this pain and blindness again. The longer it went on, the fewer days it would take before my eyes were swollen shut, my skin was blistered and I could not breathe. Each time it took longer and longer to recover, and I was hospitalized several times.

When I arrived home from work each day, I would have to strip my clothes off in the garage and throw them in the washer and RUN to the shower because my skin burned so badly, and because I HAD to wash the chemicals off. I still have to do that if I go out ANYWHERE—to the Doctors’ offices, lawyers, etc.  The company said they would get us respirators and would clean up all the mess, but the dust covered everything we touched and breathed.

Why did I stay? The pay was very good. The team was great. We were working on a computer project that was interesting, exciting, and fun—cutting edge of technology.

We were working 70 hours a week because we had impossible deadlines, but we all enjoyed each other’s company and the project we were working on together. We also all expected that the Company would “fix the problem and take care of us”. (Ya, Right!!!)

On December 1st, 1994, I returned to work from a couple of weeks of recovering from my previous exposure. I had been moved to another floor, so I was very hopeful there would be no problems.

I lasted 3 days. By the 3rd day, my eyes were swollen up to the middle of my forehead. The environmentalist told me to go home. I was having a great deal of difficulty breathing. She told us that our symptoms indicated exposure to VOCs (Volatile Organic Compounds which are carcinogens).

We began to be very frightened about what permanent damage was being done tome.  Only God got me home that day. I had to hold one eye open with my fingers to see, but all I could think of was getting home, getting out of those clothes, taking pain medication, showering the stuff off me, and getting some cortisone drops in my eyes and ice on my eyes.

The Doctor kept me out of work throughout December and January, and I was totally homebound. I called my boss and co-workers every day to let them know I wouldn’t be in because the Doctor hadn’t released me yet. I spent many hours each day on the phone with my co-workers to help them with the project. They knew nothing about Procurement because I was the Team Expert on that. The Human Resources office was in touch with my doctor so much that he started refusing to take their calls.  He faxed them reports instead.

Throughout this whole ordeal, I was threatened with job loss, and pressured, and treated abominably by management because I was sick (They MADE ME SICK, I couldn’t help it!) I was told by my boss and by Human Resources to “Get used to the pain or quit my job!”

Can you believe that? How do you work when you cannot see?

On January 23rd, 1995, I received a Certified letter in the mail from the company, telling me I had been fired for job abandonment on ‘January 9th, even though I had 6 months of sick leave coming to me and I was under a Doctor’s orders not to return to work yet. I had talked to my boss every day until the day I got that letter, and he never even hinted up to the 23rd that I didn’t have to call because I was fired on the 9th.

I had a nervous breakdown.

I was diagnosed with severe Clinical Depression and Post Traumatic Stress Disorder. It took months to get me up and out again, and then I would just walk to the mailbox and get lost, and cry because I couldn’t find my apartment.

The Doctor told me that I had a 50/50 chance of never being able to work in a commercial building again. I prefer to think the glass is half full, so I looked for work. I tried 3 jobs through a temporary agency. On each one I lasted only one day and was very ill. On the last one I had to be hospitalized with chemical pneumonia.

In November 1995, my attorney sent me to the Environmental and Neurological Doctors for testing at the University of Southern California. My friends took up the collection to pay for our gas and food, and the attorney paid the$1,500 Doctor bill. The Doctors at USC told me I have Degenerative Encephalopathy of the brain, eyes, and ears. I have lost most of my short-term memory, and 50% of my sight and hearing, and have Chronic Fatigue Syndrome.  They told me the only “cure” was to build an “environmentally safe house”($350,000 to $500,000) in the mountains somewhere where the air is clean. Then my time left to live would go from the estimated 1-2 years to many more years because I would be living like “the boy in the plastic bubble”, and that would slow down or even stop the disease.

Turns out that my “settlement” won’t even cover a “safe house” for me. It may cover a year or two of my medical expenses. 

So here’s how I feel every day 24/7. I have loss of long and short-term memory, Depression, PTSD, Panic Disorder, Vertigo, intermittent slurred speech, 50% loss of vision and hearing, Blurred vision, Glaucoma caused by2-1/2 years of using steroid drops in my eyes, chronic and constant sinus, ear, eye, head, rib and throat pain. Difficulty breathing without medications and breathing treatments, Chronic candidiasis (yeast infection) in my mouth and throat, Poor concentration, Constant pain in back and chest, Chronic coughing and wheezing, high blood pressure and cholesterol, Osteo-arthritis in my hands and feet also caused by the chemicals, Loss of bowel and bladder control so I have to wear protection, Central nervous system tremors in my hands, arms, and head (I call it my Katherine Hepburn look), Cataplexy (I lose consciousness and fall down and hurt myself. When I am conscious again, I am totally paralyzed for 10 minutes to 3 hours.), narcolepsy, Chronic fatigue syndrome, an enlarged and painful liver from having to handle all the poisons, night sweats and chills, temporary loss of muscle control when exposed to ANYkind of chemical. Went into respiratory arrest when exposed to chlorine. So my sister, Nancy, got me a special filter for the shower, but I had to wear my charcoal-filter mask to use the bathroom or sink.

The doctors predicted that the degeneration would continue until I could no longer see, hear, or think, and I would die by Nov. of 1997 unless I could get into a “safe house”. Well, God had other plans. Doctors can be wrong, God is with us helping us to bear this burden, and God will HEAL me. I KNOW He will with all my heart.

We have no scented products or chemicals in the house, Nancy has managed to buy some HEPA Air filters and a HEPA vacuum, and only cleans with baking soda and vinegar and such. I have to wear only cotton, and lots of other “have to’s”, some off which we cannot afford to do. Nancy ordered $500 worth of oxygen equipment for me so I can do this new oxygen treatment which seems to be helping quite a bit.

We have no visitors. No one can come to our home without first “detoxing” themselves from as many chemicals as possible - they can’t wear any scented products and have to wash their clothes in baking soda instead of scented detergent, or I will have a “reaction”. I have to wear an organic cotton, charcoal filter mask whenever I go outside my home.

My “settlement money” from Nevada Power Company will maybe pay for my medications and care for a couple of years. I fought for four years to get Social Security Disability, and finally, a few months ago, received it. I get $496.00 per month which does not even cover a third of my medications.

My sister just bought a 10-year-old house, and had the ducts cleaned, bought a whole-house hepa/charcoal filtration unit (big bucks), she cleaned and sealed all the carpeting, and cleaned and sealed the walls and cabinets, with AFM supplies.  I now use an oxygen generator/humidifier at night, and during the day I use pure oxygen when necessary.

She had an expensive whole-house water filtration system installed, which is wonderful. She had to have the gas stove, heater, and water heater replaced with electric ones. Now for the first time in my illness, I usually wake up WITHOUT a headache. What a blessing! I used to sleep (CFIDS) about 18-20 hours a day, but now am up alot more than I was. The sort-of-safe-house has made a big difference for me. Now I have hope.

E-mail Donna


 
Elizabeth

It would seem like this story would get easier with repeated telling but it does not. Thinking about all the betrayal renews the wounds.

In 1985 our family bought a 6month old home on 32 acres of land outside Dallas, Texas. We were told the home had been treated for termites. When we moved into the home there was a peculiar smell like that of a swimming pool, but we attributed this to “new house” smell. We did not know it was the high odor of chlordane pesticide.

Later we were lied to be the state investigating agency who deliberately misinformed us as to the levels in the home saying that they were much lower than they actually were. This was a massive misapplication where 42 or more other home owners had contacted me and reported “seeing” misapplications of chlordane by this same applicator.  The applicator was the nephew of the Texas Pest Control Association President.  Nothing was done despite two infant deaths attributed to Neuroblastoma cancer, which has been linked to chlordane use. Also there were 2 rare cases of liver tumors in young teenagers which is very rare, also in homes misapplied with chlordane.

When I attended a Texas Structural Pest Control Board meeting to complain of this investigation and the complete cover-up of our poisoning during a break one of the Board members present took out a gun and pointed it at my six year old daughter. This took place in a room full of people and was reported in the Houston Chronicle News.  As this meeting was being held at Texas A & M University it was a felony to bring a fire arm on campus, but the board member was never charged.  The EPA also failed to investigate the particulars of this specific case or the 42 other misapplications. The applicator goes free today with no fines or censure simply because when he heard I had filed my complaint with the ‘Bug Board’ he sold his business and his home and became judgement proof.

We lived in this home for five years believing the ‘Bug Board’ about the “Trace amounts” of harmless pesticides still in our home. Later an investigation by an independent industrial hygienist revealed that we were living in levels of pesticides that exceeded many Superfund sites. Within a week and a half we abandoned our home and all possessions taking only the clothes we wore.

Our pets had been dying with rare sarcoma cancer. My husband had been diagnosed with sarcoma cancer.  I had developed a lesion on my face and 15-20 tumors throughout my abdomen and midriff. Our daughter had a tumor in the sacral area of the small of her back. We had been chronically ill with chronic bronchitis, itching, rashes, burning watery eyes, vomiting and diarrhea, incredible headaches, dizziness and personality changes among a host of other symptoms. Abandoning our paid for home was the hardest thing ever especially as by this time our family was disintegrating under the pressure and lack of support.

No one thought pesticides could do this type damage. People would say things like, “I would be happy to get a pest control treatment like that. What are you complaining about.” Once when I attended a Texas Senate Hearing on taking chlordane off the market in Texas it was reported that a lobbyist for the Texas Pest Control Assoc.. (TPCA) was overheard to say that we should not complain as using chlordane gave us free birth control. The TPCA later testified that the physical affects of chlordane were no worse than taking a high school exam.  An open admission of the neurologic affects. Who would want to take their exams everyday, 24hrs a day?

We not only suffered the loss of our health, our home, our pets and all our household goods...we were systematically betrayed by our local, state and federal governments. Next came the betrayal of our lawyers. After forcing an inadequate settlement on my daughter that the court tied up and would not allow to be used for the special medical care or schooling that was needed, one of the attorneys went to Disneyland. My daughter could not go to Disneyland because of her illness and newly created poverty, but her attorney reportedly had a great time.

In 1994 I was diagnosed with a brain stem tumor. After 12 hours of surgery it could not be removed as it had grown into the brainstem. I had been having horrendous headaches for four years but even my Occupational Medicine doctor insisted that these were the common headaches of someone with toxic encephalopathy. They were not. These headaches never went away and movement or stress would bring blinding pain. We had developed and were later diagnosed with Multiple Chemical Sensitivity, porphyria, asthma, chronic sinusitis, autoimmune disease and thyroid tumors to name a few.

The disability betrayal set in almost immediately as my daughter and I became very ill everywhere we tried to go. The school refused to accommodate my daughter with an appropriate education. Eventually forcing her into a much harder guided study course in order to avoid forced exposures. Local County Commissioners refused to grant equal access to attend county meetings. Hospitals, which were very toxic refused to help at all. But then there were people who even though they could not imagine the problem of chemical sensitivities were unbelievably kind.

Divorced and living alone with my daughter on SSI and borrowed money, coping with the ever present danger of my brain tumor and the unrelenting isolation imposed by chemical sensitivities...I wonder what my life would have been like if we had not been poisoned.

write to Elizabeth


 
Georg - 29

I was exposed to harsh chemicals several times, most notoriously at Smith Corona in the nickel plating room with no air filters. I volunteered at an animal shelter with industrial strength cleaners, and had a desk right next to a laser printer. But the final straw came when they redecorated the office with vinyl wallpaper and glued down new carpets.

I could no longer enter the building, and they fired me because I couldn't do my job. It was like a flip of the switch- and I became allergic to everything: eggs, soy, corn, wheat, milk, preservatives, perfume, soap, other cleansers, animals, pollen, mold, etc.

On unemployment, and locked at home with my air filters, I improved somewhat. I managed to find another job that I can go to, but I still encounter perfumes that send me home for the day. My frequent absences are being commented on... I'm searching for employment I can do at home. 

Meanwhile, plans are going forward to paint my building- despite my protests.

E-mail Georg


 
Hanni

For some reason, I just never wore perfume, used make-up, used scented products, etc. It's just the way I was. I lived in a mountain community, had goats and chickens etc. Then I started college. (I was a high school drop-out, and had lived on my own from age 14).

I was up to my elbows in formaldehyde-fixed cats in the anatomy lab my first year and didn't notice a problem. In fact, between classes etc. I'd sit and study in the anatomy lab. I was so tired all the time, but it seemed logical due to working, going to college full-time and raising two boys who were used to having unlimited space in which to roam and climb trees etc..

My second year, I was a lab assistant in the anatomy lab and started getting migraines. It took me a long time to figure out it was the formaldehyde, but I didn't last the semester.

I avoided the anatomy lab during fall semester when the cats were used and felt that my problem was solved. However, I had this "test stress" problem--I'd get very confused at times and had to reread questions over and over. I went to the school psychologist and learned relaxaton techniques. They didn't help with the alledged test stress, but I could get very confused very calmly!

It wasn't until my second year of vet school that I knew beyond a shadow of a doubt that formaldehyde caused this confusion.

I took a leave of absence from vet school due to health problems that no doctor could put a label on--except depression, which was ridiculous; I fit no known diagnostic criteria I've ever seen for depression.

I worked in a lab at the vet school for the next couple years and never got better. I started to have problems with a car pool lady's perfume--I'd get a runny nose and headache. I also started getting very confused around various lab chemicals.

I switched jobs, started working in the histology lab and within a month I was unable to continue working due to cognitive difficulties. It was unsafe to drive the 37 miles, not to mention forgetting conversations directly after having them etc. Then I started reacting to many things--a friend's cologne, Lysol, cleaning products used in stores, and etc. etc.

Funny thing--my next-door neighbor (FM diagnosis) has just in the last month, after a stint in the Emergency room which was adjacent to new construction and smelled strongly of carpet glue, started reacting to fabric softener, the detergent isle in the grocery store, and other things.She describes symptoms that are so much like how things started for me.

It is my hypothesis (and much evidence to back it up) that the paper mill in thie valley I live in puts out some pollutant that "enables" susceptible people to develop MCS.

Whew! More than I've written in a long time. It's been a hard year for me.

Hanni


 

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