Welcome to my world, kids…. if you can handle it.
Living with Multiple Chemical Sensitivity: Narratives of Coping by Gail McCormick, MacFarlane
Part of the proceeds from this book will be used to provide MCS education, research and support to people who cannot pay for services.
Jennifer, twenty-seven when we spoke, is one of many chemically sensitive people who have moved to Santa Fe in desperation. Before she made the move she was so reactive to everything in her indoor environment that for four years in Colorado she lived outside as much as she possibly could without freezing. A native of Minnesota, she was a freshman at Colorado College when she became disabled at age nineteen. Instead of living the life she had dreamed of as an independent dent college coed, she has been an invalid throughout most of her twenties. The hardest part of coping with her illness has been missing out on all the “normal” activities of this stage of life.
Jennifer has a long history of allergies, injuries and physical problems that all seem to overlap, and a family history of environmental illness. Her grandmother had a lot of allergies and her mother is sensitive to perfume and cigarette smoke. Her brother became sensitive to chemicals while working in a lab with toxic waste, and now is extremely “allergic” to perfume. As a child Jennifer often had allergy “shiners” under her eyes, although no one realized that that was what they were at the time. When her tonsils were removed her reactions to anesthetics and medications kept her hospitalized for two weeks. In the sixth grade she developed problems with her connective nective tissue and digestive system. She lost twenty pounds, gave up gymnastics and used crutches for a year, then went back to sports. In high school she developed an eating disorder and pushed her body to its limits in long-distance running, skiing, tennis, cycling and other sports. She also led wilderness backpacking and canoe trips. In college she was training hard every day, eating poorly and sacrificing sleep to study and party. Her body finally gave out. A groin injury crippled her completely. After surgery it wouldn’t heal and she was confined to a bed for three years.
Since then her health has been further compromised by a series of events. At one point she developed a staph infection when her appendix was removed. The infection didn’t show up until two years later when her navel began to ooze after a massage. Seven years later, it still oozes. She is now treating it with homeopathy because surgery is considered too risky for her. Quite by accident Jennifer discovered that her tendon and connective tissue problems and chronic fatigue were exasperated by molds and chemical exposures. Her understanding is that her various health problems are related to but not completely caused by MCS. One doctor’s theory is that her MCS and connective tissue problems may be caused by a metabolic dysfunction. Another doctor, tor, after looking at her extensive medical history, told her she will never find an answer. Jennifer summarizes her ten years of medical tests and examinations by saying that her body doesn’t absorb nutrients and her immune system has collapsed. Jennifer requested that her last name not be published in order to protect her privacy.
My first year of college was the best year of my life, until I became so crippled I couldn’t even walk. I had a lot of jobs and led a lot of wilderness trips to the Boundary Waters in Minnesota. Actually, ally, I was hyperactive, which can be a symptom of allergies. All my jobs were very physical, and I had a series of injuries that year. I had surgery for a groin injury, and it wouldn’t heal. I went to numerous doctors and pain clinics, and finally went to Mayo Clinic for a month, where they put me on muscle relaxers, pain killers, steroids and twelve Advil a day. None of that made much of a difference, and probably set me up for my environmental illness. I was in such severe pain that I couldn’t sit or walk. We had no idea what was wrong.
I was so sick of going to doctors that I didn’t want to go to another one, but my mom took me to an osteopath path who discovered my hips were severely out of place. He moved them back into place and my health began to improve. But by that time my system was so depleted, I was still confined to my bed or wheelchair and didn’t get any exercise. That winter the whole inside of my parents’ house was painted with an oil-based paint. After that my tendons swelled, I had to wear a neck brace and I couldn’t even feed myself, but we didn’t realize there was a connection between the chemical exposure sure and my health. The tendons dons in my eyes were so swollen I could hardly see. It was terrifying and traumatic for me. For three years I was in bed, couldn’t see anybody or do anything. It was all I could do to try to sit for a few minutes at a time.
I missed my friends from college, missed school and missed my active life. I wasn’t in touch with my feelings at the time. I had to stay above them or I never would have survived. The only kind of therapy I could do was in a heated pool. They would put me in the water right in my wheelchair, and a therapist would help me to move a little bit. I did that three times a week, until we realized that I was chemically sensitive. Then I discontinued the water therapy to minimize my chemical exposures. Prior to that, I also started seeing alternative doctors who found I was depleted in all kinds of nutrients. They put me on amino acids and gave me IV vitamins but still hadn’t made the environmental connection.
To give my mother a break from caretaking me twenty-four hours a day, I went to stay with a friend of the family whose husband was away. This woman used all fragrance-free and nontoxic products because she was slightly sensitive to chemicals. A couple days after I moved into her house I could walk a little, and in a few weeks I was much better. That’s how I finally realized that chemical exposures were affecting my health. At first I was excited because I thought that I would completely recover by changing my diet and lifestyle. I read a lot about MCS and environmental illness, and my doctor started helping me to detoxify my body. I ended up living with our friend for nine months and improved a lot.
But I’ve also learned that doctors have never seen some of my symptoms in others with environmental illness, so part of my problems seem to be something separate, and I continue to see other specialists. I’ve been told that my environmental illness and connective tissue sue problems may be partly caused by a metabolic problem. I’m not getting nutrients to where I need them in my body. This year it’s starting to affect the collagen of my skin. One metabolic specialist I saw looked at my medical records and said, “You’re not going to find answers.” We’d spent thousands of dollars and I was still sick. She asked me what I’d done that had helped, and I told her I ate organic foods and avoided chemical exposures. She told me to keep doing that, which was amazing to me. I don’t usually mention my chemical sensitivities to mainstream doctors.
That spring I took a turn for the worse because I was reacting to molds and pesticides. On top of that, our friend’s husband, who doesn’t believe in environmental illness, came home, and he wore a heavy scent. My body just collapsed again with chronic fatigue. That time I was in bed again four months, unable to do anything.
When my doctor realized that I was extremely sensitive to mold he told me to go back to Colorado where it was drier. As soon as I was strong enough to sit, I got on a plane and went to Colorado, rented a room in the house owned by a wonderful woman named Ruth who led an MCS support group. She said she’s never seen anyone one as sick as I was, and she helped me a lot. But her house was so moldy that I got even worse and had to sleep outside.
That was the start of living outside on and off for four years because I never could find housing that didn’t make me worse. I had such a hard time in Colorado that I don’t care if I ever go back to that state again. My mom brought out all my things and wound up staying for four months trying to find housing for me. Part of the time she stayed in cabins and part of the time she camped with me, even though she hates to camp. I had to use a blue plastic tarp to make an A-frame for myself, because even tents were making me sick. Out of desperation ation we looked for a house to buy, even though we couldn’t afford it. We looked way up in the mountains and all over Colorado, but nothing worked for me.
One October was so cold I needed to be inside, so we took a cabin knowing it was not a good place for me. We tried to make it safer by covering the whole thing in foil. My mom and I foiled all the floors, the walls and even the furniture. But I was still reacting. A friend of mine with MCS came to try to help me figure out what was causing the problem. It was a mystery. The X factor. Then I realized I was reacting to the foil! I was also reacting to the electromagnetic fields. So we covered all the foil with tapestries. We called it the “hippie” house. I got really sick in there but I had to stay for the winter. There was nothing else.
That spring I was coming to Santa Fe for medical treatments. I used hand controls to drive my car without using my legs and feet all the time. That gave me more freedom, but sometimes I was so sick that Ruth or another friend had to drive me, or my mom would have to come from Minnesota to go with me. I gave the treatments a good shot, but they only made me worse and I gave that up after a year and a half.
The summer after I stayed in that cabin was my “summer from hell.” I was twenty-two. All my life I’d felt invincible, and now I couldn’t even fully take care of myself, though I desperately wanted to. I tried to stay at Ruth’s house again and got so sick from the mold that I couldn’t move. My mother had to fly out, with hardly any notice, to get me out of the house. She wound up camping with me in national parks most of that summer. I couldn’t have done it without her.
My mother has gone through hell with this. She and my father have spent their retirement funds on my health care. I don’t know what they’ll do when they retire. This has been so difficult for my mother, she’s gone through some counseling just to help her cope. She deserves so much credit. She has scrubbed walls, cleaned carpets and foiled condos or cabins, trying to make them safe for me, only to find out it wouldn’t work, and start all over again in another place. She really got worried when my brother developed chemical sensitivities when he was working as a chemist in a toxic lab. He looked horrid, and my mother was so worried. She said, “We can’t afford another one!” He left that job and now works outside as a hydrogeologist, geologist, and he looks great. But he’s still very sensitive to fragrances. A boyfriend from college also supported me through those years in Colorado, especially one winter when I was living in an isolated cabin. He brought me things I needed and kept me company on the weekends. We spent a lot of time talking. He hiked while I rested. He did things for me that I couldn’t do myself, like vacuum the floors and take out the trash. Those are the kinds of things I still can’t do, so I have arranged for my roommates to take care of those things.
I experienced a lot of fiascoes while I was living outside. One time a bear came into my campsite because my cooler was sitting on the ground. I knew from my wilderness experience that it wasn’t safe to leave food or coolers on the ground, but I didn’t have a choice. I was physically unable to stash my cooler in a tree. The bear threw the cooler around and pawed through the food, then came and sniffed all over me while I lay still in my sleeping bag. I couldn’t move. There was nothing I could do but lay quietly and pray. The bear finally left about an hour later. My food was strewn all over the ground and there was nothing I could do about it. My mother wasn’t coming back until the next afternoon. By noon the next day I was so hungry that I stuck my hand into a jar that was dripping with bear saliva and ate some of the spoiled food. The cooler survived-which I always thought would have made a good Coleman commercial! That was when there were only about nine foods I could eat, mostly plain meat and vegetables. I’d go to a friend’s house or my mom’s cabin to steam enough vegetables to eat for four days.
Another close call was when I was camping alone, way out in a deserted campground and a creepy guy came along. I was never so scared in my life. My mother was gone with the car and not coming ing back until the next day. There was no place to hide and no way to get away. I just kept saying, “My mother will be here soon.” I lucked out and he left me alone. I didn’t tell my mother about the incident right away because I didn’t want her to worry. But I decided that from then on I would camp in more populated areas. The problem with that, though, was that I had to move several times a day and several times a night because I’d get wind from a camp fire or somebody using bug spray.
When my mother was sick of camping out she would stay in a cabin or condo. There were times when she had to drive out and try to find me in the dark when it was storming, because she knew the wind and rain would blow my tarp away, and that I was too weak to recover it myself. She’d find me, find my tarp and stake it down again.
Trying to find a place to shower was another challenge when I was homeless. Sometimes I found showers in office buildings. Quite often I showered in a building where I went for body work. Or I would go to a friend’s, or to the cabin or condo where my mother was staying, just long enough to take a quick shower. One time my mother was staying in a cabin at a campground, and the maintenance crew had just cleaned out the water pipes with chlorine. I didn’t know it, but all the other campers were complaining ing because they’d used too much chlorine and it had caused a toxic hazard. I went in and took a shower, thinking the chlorine smelled strong to me because I was so sensitive. My mother walked in and screamed, “Get out of the shower! That’s pure chlorine they’re dumping on you!” By then my skin and hair were saturated with chlorine, and I had to get it out. I remembered a massage therapist who had said I could come to her place if I ever needed a shower or bath. So, at ten o’clock at night my mother and I arrived at her door, freezing cold, and this sweet woman took us in. It was a most magical night I will always remember because it had been so long since I’d had a hot bath, and my mom got to sit with the family enjoying hot tea and cookies and watching a movie. Another memorable shower incident happened when I went to get a haircut. Before I could stop the woman she sprayed some detangler or something on my hair. I was extraordinarily sensitive to everything at the time and it made me horribly sick. I had to get it out. So, my mother and I went to my friend’s house but she couldn’t let us in because the smell of the hair product made her sick, too. So my mother tried to wash my hair with vinegar and baking soda outside with the garden hose. Then we started driving back to my campground, an hour away. We were both tired and ornery and wanted to sleep. But the smell was still on my hair and making me sick. I tried to cover it up with a cap, and that didn’t work either. As much as I hated to I said, “Mom, we’ve got to go back to Lisa’s to get out this smell.” We drove back, I took off my clothes, covered my body with plastic garbage bags and drenched my hair outside with tomato juice. We knew that tomato juice takes away the skunk smell from dogs that have been sprayed. We figured that if it worked for that it would work on this hair product. All the neighbors must have wondered what in the world I was doing outside in the freezing ing snow with plastic bags on me! It did work, but I remember freezing the rest of that night.