My Story

by Debra Lynn Dadd
author, Home Safe Home  

I was first diagnosed with multiple chemical sensitivities in 1978. At the time, the field was fairly new, and not many doctors or patients know about how toxic chemicals can affect the immune system.  

MY EARLY EXPOSURE TO CHEMICALS

I had grown up around a lot of chemicals. My mother was one who wanted everything modern and new. We used toxic cleaning products and pesticides, drank tap water, ate fast food and packaged foods with artificial additives and preservatives (and I ate a lot of sugar), wore perfume and used other scented products, slept on polyester-cotton sheets on synthetic mattresses and most of our furniture was plastic. I grew up in a modern American middle class home.

When I left home to attend San Francisco State University, I initially lived in an old apartment with hardwood floors. But when I left school in 1977, I moved in to a newly-renovated apartment in San Francisco, with a gorgeous view of the Golden Gate Bridge. It also had brand new wall-to-wall synthetic carpets and polyester drapes. When the setting sun warmed the drapes, they smelled horrible. The kitchen had new particleboard cabinets that reeked of formaldehyde and a soft vinyl linoleum floor. Since it was a studio apartment, I bought a modern sofa bed that was essentially a big piece of fireproofed foam that folded up. I still slept on polyester-cotton sheets with a polyester fill pillow.

I began a cycle of not being able to fall asleep at night and then not being able to get up in the morning. My normal wake-up time was around seven a.m., but in this new apartment, it was hard to get up. I would wake up groggy and fall back to sleep. When I finally did manage to get up, I would take a shower in chlorine vapors and read the morning paper, which at that time smelled strongly of printer�s ink. I would then dress in my polyester and acrylic clothes and put on my scented deodorant and cosmetic, then spray my body with perfume. Finally, I would sit down to practice at my piano, which had recently been refinished.

With this nightly insomnia, I was never able to get enough sleep, and so was constantly fatigued and lacked motivation. I was usually depressed and had strong self-doubts. Much of the time I felt confused and disoriented. I began eating obsessively and gained weight. I went to a doctor to help me lose weight. He gave me weekly shots of "vitamins," which did make me feel better and I did lose weight. In retrospect, I suspect those vitamins were actually drugs.

In early 1978, I became engaged. My fiance lived in Berkeley, in a beautiful old house that had been converted into apartments. There I had my first exposure to gas heat. I remember the heater. It was an old freestanding heater that had been placed in front of a fireplace that no longer worked. I could see the gas flames burn and all the combustion by-products went directly into the room. Though we got along well in other places, whenever I would go visit him at his house, we would frequently quarrel. and I would often cry uncontrollably and become hysterical.

Since we planned to live in that apartment after we married, I began redecorating it. I painted the kitchen with oil-based paint. In the bathroom, the shower had been constructed with cement walls that had been painted instead of tiled. Much of the paint was chipping off, so in preparation for tiling, I put toxic paint stripper all over the shower, then stood in that small cubicle with a razor blade and scraped all the paint off, inch by inch.  

HOW I DISCOVERED I HAD MULTIPLE CHEMICAL SENSITIVITY

In the midst of this year of being on my own for the first time, and becoming engaged, I learned that my mother was about to die from cancer. She had tried many treatments, but now the doctors told her that her time was short, and I moved back to my parents' toxic house to take care of her during her last days. I moved back just in time to spend the last month of her life with her, and then found that the real reason I needed to be there was to care for my father after her death.

Later I found out that that the peaceful little suburban subdivision that I lived in from age seven to twenty-one was downwind from a chemical refining plant. It was far enough away that we didn't notice it, but the wind carried it's pollution right in to our neighborhood. At the same time my mother died, other neighbors also had cancer--enough that our neighborhood was designated a "cancer cluster." My mother and I were both exposed to the same chemicals. She died of cancer and I became chemically sensitive.

It was a time of extreme stress. My mother had died. My engagement had ended. I wasn't sleeping and I was overeating. Life was pretty bleak.

One night, shortly after my mother died, I was sitting at the piano, playing the second movement of Brahms' Piano Sonata in F minor. It is a very beautiful and moving piece of music that could bring tears to anyone's eyes, but I started crying uncontrollably. I just couldn't stop crying.

Now I had plenty of reason to cry, but my father saw it differently. While my mother was living, he had wanted her to have intravenous vitamin C treatments. The hospital wouldn't administer the treatments, so he found a doctor who would. The doctor was one of the first to practice what is called "clinical ecology" or "environmental medicine." While waiting for my mother to get her vitamin C, he would watch the patients undergoing a procedure called "provocative-neutralization testing" in which the patient would be given a drop of a diluted chemical and symptoms would turn on. Then they would be given more of the same chemical in different dilutions until the symptoms would turn off. He would sit there and watch the symptoms turn on and off. One of the symptoms was hysterical crying. He put two and two together and said to himself, "This is what is wrong with my daughter."

He suggested that I go see this doctor, but I would have none of it (I learned later that one of my symptoms to chemical exposure was a refusal to do anything to help myself). So he just kept learning more and more about chemical sensitivity until the moment arrived when I could consider it for myself.

So that night--I remember this so clearly--I was sitting at the piano crying uncontrollably, and my father came over and gave me a glass of water with bubbles in it.

"What's that?" I asked between tears.

"It's Alka Setlzer Gold," he said, "Just drink it." He had learned that drinking Alka Seltzer Gold would stop a chemical reaction.

"No," I screamed. "I'm not going to drink this," I threw the glass against the wall, spilling it's contents, and got up from the piano.

My father calmly fixed another glass of Alka Seltzer Gold, wrestled me to the floor, and held my nose until I opened my mouth. I choked on a few swallows.

In less than a minute, I stopped crying. I felt perfectly calm. Though the circumstances of my life gave me reason to cry, one minute I was crying and the next minute I wasn't. It was like a storm was raging inside me and the next minute it had vanished.

This scared me. The next day I went to the doctor to get tested.  

PROVOCATIVE-NEUTRALIZATION TESTING

As I've already described, provocative-neutralization testing is a method by which doctors can clinically "turn on" symptoms to chemicals and turn them off. If one had symptoms to the test chemical, the doctor considers the patient to be sensitive to it.

I tested positive to most of the common chemicals, including formaldehyde and perfume. At that time, the treatment was to give the patient small bottle of antigen to take under the tongue throughout the day. The idea was that the correct dose of the antigen would neutralize the patient's symptoms and he or she could live a "normal" symptom-free life while still being exposed to those chemicals.

The antigen preparations were made, as many drug preparations are, with preservatives, usually formaldehyde or phenol. So in addition to the chemicals I was exposed to in my environment, I was also given doses of chemicals throughout the day that were supposed to neutralize those chemicals, and in addition, even more chemicals in the form of preservatives.

I took the antigens because the doctor told me to. I got sicker and sicker and sicker, so I stopped taking them.

Later, after my father and I moved to another city, I went to another clinical ecologist and we started the round of testing chemicals all over again, this time with preservative-free antigens. We also tested foods, pollens and animal dander, molds, and many other things, including the hormones in my own body. By that time, my immune system was very damaged and it was extremely difficult to test me. The tester could turn on my symptoms, but had a hard time turning them off. We never found a dose to end the test for hormones. In addition to my chemical sensitivity, I subsequently had many years of "unbalanced hormones" that resulted in their own set of symptoms and conditions.

What is being overlooked with this approach is the cause of the symptoms. Provocative-neutralization testing can be a good diagnostic tool, but the resulting antigen treatment is designed only to relieve symptoms. I was still being exposed to chemicals that were causing damage to my body.  

THE TURNING POINT

About a year after my mother died, in the summer of 1979, my father finally sold his house and he and I moved to a condominium in Oakland, California. It was on the street floor, next to a stop sign. All day long, cars would stop and start and their exhaust would come in the house through our open windows. It had new carpets and paint, and I further redecorated by applying a white finish to a wall of wood paneling, painting all the kitchen and bathroom cabinets white, laying a new vinyl floor in the kitchen, and applying self-stick vinyl shelf paper to the entire interior of every cabinet.

I was already very sick and all these chemical exposures made things even worse. I now had constant headaches, insomnia every night and taking a shower made me feel faint. At times I would just "space out"--I would be talking with someone one minute and the next minute I wouldn't know where I was. I had strong, sudden uncontrollable urges to eat--mostly sugary junk foods--and kept gaining weight.

By Christmas 1979 I was practically disabled. My father, once again, identified the problem perfectly. He gave me a copy of a little book--I don't remember the title--about how food allergies make people gain weight. I didn't know anything about food allergies then, but I read the whole book cover-to-cover the day after Christmas. It recommended going on a fast and then eating foods one by one to identify which foods caused symptoms.

Going on a fast was easier said than done, for it required having pure water to drink. At this point I was severely addicted to sugar and could not function without it. I remember falling out of bed and crawling to the kitchen to get cookies, so I could stand up and drive to the store to buy water. But there was no water bottled in glass except sparkling mineral water, so I bought a case of Perrier and started my fast.

For four days, I went through agony. It really was like a drug addict or alcoholic going through withdrawals. But on the fifth morning I woke up and felt great! My mind was clear, my body had a lot of energy. I jumped out of bed and went for a long walk. I had a new life for the new year.  

DETECTING AND CURING FOOD INTOLERANCES

After my fast, I began to eat foods one by one and write down my symptoms in a notebook. Sometimes the reactions were immediate, other times they were delayed. After each food, I had to take a laxative to get the food entirely out of my body before I tested the next food. This was not the most fun I've ever had.

But I did end up with sixteen foods I could eat without any reaction at all. I don't remember the whole list, but it included pecans, sweet potatoes, butter, and cream cheese. I had no cuisine. I just made a plan and ate the foods in a rotation so that I ate each food at four-day intervals (doctors say that food allergies develop from eating the same food too frequently--spacing foods at four-day intervals allows all the residues from each food to leave the body before it is eaten again).

I ate this way for a year before I introduced any new foods. This may sound extreme, but it worked. At the end of a year of abstaining from all foods that caused symptoms, I was able to eat most of them. I was very careful to eat a variety of foods and eat them as infrequently as I could, so as to not develop another allergy to them.  

LEARNING ABOUT CHEMICALS IN MY HOME ENVIRONMENT

One day, while sitting in my doctor's office, I started talking with another patient. She asked me if I was still sleeping on polyester-cotton sheets. I replied I was and asked why. This was the first time anyone had suggested to me that I find out where the toxic chemicals were in my home which were making me sick.

I didn't pursue finding out more about this until after my fast. Relieved of the symptoms associated with food exposure, my chemical reactions became more acute.

Slowly I began to associate particular symptoms with specific exposures. When I put on perfume, immediately I would get a headache; when I stopped wearing perfume, my headaches stopped. I felt faint in the shower, so I asked my father to rig up a filter that would remove chlorine; when he installed it, I no longer felt faint when I showered. I felt tired when I cleaned the house with toxic cleaning products; when I switched to vinegar and baking soda, I had plenty of energy for cleaning.

I also started doing research on toxic chemicals in everyday consumer products. Seeing the correlations between my symptoms and exposures inspired me to track down the chemical exposures that weren't so obvious. I started by going to the library and poison control centers, then medical libraries. I would read trade books to discover the chemicals in products, then toxicology books to find out their health effects. From this research, When I read that one of the symptoms associated with formaldehyde exposure was insomnia, and that a formaldehyde resin is used in all polyester-cotton bedlinens, my sleepless nights were no longer a mystery.

Some of the chemical exposures were easy to eliminate and others were more difficult. To eliminate exposure to perfume, for example, you can just stop wearing perfume, but you also need to eliminate all scented products, which include such basics as shampoo and soap. Finding sheets for my bed that didn't have formaldehyde-based permanent-press finishes was no easy task in 1980 either. I couldn't find a natural fiber bed or even a futon, and ended up sleeping on cotton thermal blankets on the metal springs of a roll-away cot. I ripped up the new carpet from my bedroom floor and was left with paint-spattered cement because I didn't know what kind of flooring would be safe.

Along about this time, the first book about living with chemical sensitivity came out, called Coping With Your Allergies, by Natalie Golos. This book helped many of us in those early days, for we had no information at all. Our doctors knew nothing about environmental control and gave us no guidance. But for me, it wasn't enough. I wasn't content to live the sparse life described in the book. I couldn't see spending the rest of my life eating one food at a time on a rotation while wearing jeans and a tee shirt. There had to be a way to avoid chemicals and have a good life.

That's when I began to search for all the positive possibilities. I learned enough about the toxic chemicals in products and their health effects to know what to avoid, and then I set out to find as many products as I could that were free from these chemicals. There weren't many in those days, but I found enough to begin to piece together a nontoxic life.  

THE IMPORTANCE OF A "CLEAN" ENVIRONMENT

With my limited diet and chemical-free bedroom, my health began to improve. My doctor noticed that I was the only one of his patients that was recovering, and hired me to counsel his patients on making environmental changes. He would send me out to patients' homes to find the toxic chemicals they were being exposed to, and then have me help them remove the offending products and replace them with nontoxic ones. And so I began my consulting practice. This was a very innovative approach then and now. I believe any doctor who treats patients with chemical sensitivities needs to have this service available in their office.

In addition, I also helped patients with food allergy testing and did provocative-neutralization testing.

In the summer of 1980, a patient who was extremely sensitive contacted my doctor. She was so sensitive, she could not come to the office. So I had to go to her to test her.

She was staying in a small village just north of San Francisco called Bolinas. She had rented a little house on a bluff overlooking the Pacific Ocean. The air was about as clean as its gets, anywhere on the planet. I ended up staying with her and her caretaker for a month. I had absolutely no stress. All my meals were fixed for me and all the food was 100 percent organically grown. I drank only spring water bottled in glass. I had no responsibilities except to test this woman, which I could do for only about an hour a day because she was so sensitive. We spent all of our time outdoors. We even slept outside. Every day we would go for a walk along the beach into town to buy organic food at the local co-op. That's it. The rest of the time I could do whatever I wanted.

Spending this concentrated time in a stress-free, as-clean-as-humanly possible environment really made the difference for me. At home, I had removed the chemicals from my bedroom, but the rest of the condo was still toxic and I was living in the middle of a city. In Bolinas, everything was as pure and chemical-free as could be. My body quickly healed in this environment.

When I went home after a month, initially I was more sensitive to the chemical exposures, but soon my body adjusted. Spending this time in a completely clean environment really showed me the importance of environment on healing. It was what convinced me I really had to go all the way and have a completely nontoxic home.  

ATTITUDE ADJUSTMENT

The next step for me was to become aware that what I thought affected my body. When I read about this, immediately I understood that I was prolonging my sensitivities by continuing to believe they existed.

I don't want to give the impression here that I am saying "It's all in your head." At that time in particular, that a patient's ills could be caused by exposure to chemicals in our homes was something many doctors couldn't believe. "It's all in your head" was a phrase many patients with chemical sensitivities heard before they got the right diagnosis. We are surrounded by chemicals in consumer products that can cause harm to our bodies. But what we think about our bodies' response to foods, chemicals, and other environmental exposures can affects how our bodies respond to them and how we recover from the illness.

That one reacts to a specific substance particularly gets ingrained in a patient's mind when the doctor finally says something like "your headache is due to perfume" or the patient discovers this for herself. The relief of knowing this and seeing the correlation further cements the truth of it. And so patients get a firmly established reality that says "I can't eat bread because I am allergic to it. I can't wear perfume because I am allergic to it. I can't...I can't...I can't..." and their world becomes smaller and smaller.

I began to examine my beliefs about my body's reactions to foods and chemicals. I remember observing "I'm saying I'm allergic to wheat and can't eat bread. But is this true? Wheat allergy can be reversed in as little as twelve days. Yes, I had a wheat allergy in the past, but do I now? Or do I just think I do? Or am I afraid I do? Wheat in and of itself is not harmful, so why is my body reacting negatively? I want to eat bread for nourishment. I choose to have my body tolerate it and be nourished by it."

Working through each of the foods like this and retesting them, I found that I could eat more foods. The body is constantly healing. What was true yesterday or last week isn't necessarily true today.

Yes, we need to identify what causes us harm and avoid those things, but we don't need to hold on to continuing to believe that things which are inherently benign are harmful to our bodies.

Many years later, a client told me that a Zen monk had given her some advice about chemical exposures. He said if she was in a situation where she couldn't avoid a chemical, that she could simply say, "Anything I am exposed to can pass through my body without harm" and it would. She found this to be true for her. I believe we all have the ability to change our bodies by changing our minds.

I am not saying we should surround ourselves with toxic chemicals and "think" them to be safe. Toxic chemicals are inherently antagonistic to life. Most of them are not needed at all. It's a lot simpler to just live in a nontoxic environment and use our creativity for more constructive benefits.  

LEARNING ABOUT THE IMMUNE SYSTEM

I had so much success with the patients I was counseling that another doctor, Alan S. Levin, MD, asked me to come and work in a new office he was opening in San Francisco. Dr. Levin was an immunologist. From him I learned how the immune system worked and how mine was malfunctioning.

With this new information, I was able to visualize how my immune system should work and give it instructions for repair. When I learned that my basic problem was not enough T-cells, I would visualize my immune system producing more T-cells. Over time, I felt better and believe this contributed to my recovery.

I had continued to search for safe products I and my patients could use, and with Dr. Levin's support, I self-published my first book on the subject A Consumer Guide for the Chemically Sensitive. It contained a foreword titled "Immune System Dysregulation and Chemical Sensitivity" which explained exactly how the immune system worked and the malfunction that led to multiple chemical sensitivities. This was the first book to explain the illness medically and give practical solutions for recovery.

This book sold over 2,500 copies and had national media attention, which led to my getting a publishing contract for my first published book, Nontoxic & Natural.  

CREATING A NONTOXIC HOME

When I went to work for Dr. Levin, it made sense to move to San Francisco instead of sitting in all the car exhaust of commute traffic. A friend of mine who was also chemically sensitive also wanted to move to a location with cleaner air, so we became housemates and went looking for a place to live.

We found an apartment in San Francisco at the very end of California Street, which dead ends into a park and beyond that there is nothing but the Golden Gate Bridge and the Pacific Ocean. The apartment was on the third floor. It was all-electric, but had carpets. Since the carpets were not in very good condition, we had no problem convincing the landlord to remove them. Fortunately, there were beautiful hardwood floors below.

I lived there for two years, then moved to another apartment six blocks away.

Finally, in 1985, my father decided to give my brother and I each a down payment on a house, so I had the freedom to create my ultimate nontoxic home. I chose a small town on the coast, about 30 miles north of San Francisco. I bought a little cottage in a forest and remodeled it with the few nontoxic building materials that were available at that time.  

RECOVERY

Seven years after I seriously began my healing program, I realized that I no longer considered myself to be ill. I had gained enough health that I could live a normal life without being concerned about every toxic exposure. I had a pleasant home that was nicely decorated. I could eat almost anything, at least everything I wanted to eat.

I decided to give myself a test by taking a trip to England. I traveled for a month, eating every meal in restaurants, sleeping in hotel rooms, and flying in airplanes. I went from having complete control over my environment to having no control. And I had no reactions.

I knew I had recovered because it became more important to be out in the world and live my life than to live isolated and protected in a forest in a nontoxic haven. I moved back into a small suburban town, then back to a different forest, where I lived for twelve years, and now to Florida. In each location, I was able to create a nontoxic home environment.  

MAINTENANCE

Today, seventeen years later, I am still able to live a normal life and do anything I want. But I still live in a nontoxic home.

It's a bit like being an alcoholic. You're recovered as long as you stay away from that which causes the illness. I don't have any desire to go back to living a toxic lifestyle. I like my life the way it is. Why eat canned oranges swimming in sugar syrup when I can pick the sweetest organically grown tangerines right off my tree? Why wear sticky polyester when I can wear cool cotton? Nontoxic and natural products are not only better for my body, they give more pleasure.

The body is like a water barrel. You can fill it and fill it and fill it with toxic chemical exposures and you won't feel an effect until it overflows. Once it's full, you can empty it by avoiding toxic chemical exposures.

So my life is one of balance. I can travel and eat out because at home I live and sleep in a completely nontoxic environment, eat organic food and drink spring water. I live on a quiet residential street less than a mile from the Gulf of Mexico.

There are now so many nontoxic products available that there is no need for anyone to have toxic exposures in their home environments.

I recovered from having multiple chemical sensitivities and have stayed symptom-free for seventeen years. So can you.