LIVING WITH MULTIPLE CHEMICAL SENSITIVITIES

By John Walter

I am 52 years old and have battled Multiple Chemical Sensitivities (MCS) for sixteen years. It began with a strep throat infection that ultimately led to having my tonsils out at age 36. In retrospect, I believe my initial overdose exposure was related to mold that I’d been unknowingly breathing for a year in the Birmingham, Alabama basement apartment where I was living.

When I moved from that apartment and removed clothing from the bedroom closet, I discovered the walls caked with mold. I also grew up around the farmlands of the Yakima Valley in Washington State, an area that is heavy with pesticides.

My MCS symptoms vary. They include chronic fatigue, fibromyalgia, depression, and also problems with the digestive track. Exposure to fragrances is the worst, but other fumes, solvents and chemicals also make me react. When exposed, I immediately experience an increase in the chronic pain on my right side and right chest.

I have been through years of medical testing, with doctors minimizing symptoms and refusing to listen. I sought help from anyone who was willing to lend an ear. I have tried every possible cure: antibiotics, colonics, fasting, juice fasting, exercise regimens, meditation, chiropractic, chi gong, acupuncture, anti-yeast diets, fit-for-life diets, protein diets, macrobiotic diets, Huggins diagnostics, removal of mercury amalgam fillings, and extraction of root canal teeth. I’ve also tried supplements, organic foods, purified water, medical specialists, naturopaths, dentists, and doctors of oriental medicine. I still suffer from MCS. The only way I can get any real physical relief is by avoidance, which is almost impossible if you have to make a living.

In 1999, at the age of 48, and twelve years into my struggle with MCS, I was diagnosed with stage III colon cancer. The tumor was so advanced that the cancer had spread into my lymph system. This was after years of consulting gastroenterologists who had never bothered to do a colonoscopy; they were satisfied to prescribe anti-anxiety and anti-depressant medications for Irritable Bowel Syndrome. After cancer surgery, chemotherapy, and three years in remission, I am not only fighting for relief of MCS symptoms. I am literally fighting for my life. I need to avoid ongoing exposure to toxins in order to support an immune system that will keep my body cancer-free.

For most of the sixteen-year battle with MCS, I’ve been a marriage and family therapist in private practice. After chemotherapy, I became so ill that I had to stop working. During the year 2000, I lived in the Cascade Mountains near Mt. Ranier, resting and trying to regain my health. I applied for Social Security Disability Insurance (SSDI), but I was denied and didn’t have the energy to appeal. By the end of 2000, feeling much better and nearly broke after a year off work, I started up a private practice. I found myself once again battling with clients and colleagues about fragrances.

Early in 2001, the director of a hospice program in Northern California offered me a position as bereavement coordinator. Having been given a written assurance of an odor-free work environment, I was filled with hope. Feeling a sense of "calling," I uprooted my life in Washington and moved to California in March of last year to take this job with this hospice. To my dismay and shock, I arrived my first day of work only to find that nothing had been done to provide me with a safe work environment. I was bombarded by scents from candles in the offices and fragrances worn by the staff. Lysol sprays were used in the rest rooms across the hall from the office that I shared with other people. It became apparent that the staff had neither been informed nor educated about my MCS prior to my arrival making it incumbent upon me to inform them and make arrangements for my own accommodation. Moreover, I was told emphatically by administrators, who had apparently intimidated the director, that staff members had the right to use their fragrances.

In my shock, I went into denial, believing that I could overcome these obstacles and make it work; that I was not so sensitive anymore after living a year in the mountain air. Surely the hospice staff would come to understand my dilemma and accommodate me. However, within two months my health began to decline and I began to fear there was no saving grace; that I was encompassed by a work environment in which it was becoming impossible to survive.

By the middle of July, three and a half months into my new job, I had to take medical leave, driven out by co-workers who refused to give up their fragrances. My health declined to a point near that of post chemotherapy, back to digestive track problems, chronic fatigue, chronic pain, and depression.

Now I am climbing out of the hole once again, but this time aware more than ever that I am fighting for my life. I’m no longer in denial. For the first time, I’m beginning to stand up for myself, and in the process, fighting for everyone who suffers from MCS.

I began learning about accommodation rights under the Americans with Disabilities Act (ADA), found an employment law attorney and, as a person disabled by MCS, I filed a claim last August with the United States Equal Employment Opportunities Commission against the hospice where I had worked. At the same time, I began re-applying for SSDI with the solid support of an M.D. and also filed a Worker’s Compensation claim.

These processes were extremely difficult for me as I became so hypersensitive to everything. The poor air quality of the Northern California coast where I was living was more toxic than I could ever have imagined and eventually, in November, I returned to the clean air of the Cascade Mountains of Washington State where I continue now to live attempting to regain my health.

Having little hope in the Worker’s Comp claim and unable to find a supportive attorney in that arena, I gave it up and kept my focus on Social Security and the ADA claim.

My M.D. in California, along with an Environmental Illness specialist in the Seattle area and my M.D. in Washington all began to network on my behalf regarding SSDI. In March of this year I received my award letter from the Social Security Administration deeming me permanently disabled and giving me a review date in five to seven years which is indicative of cases they perceive as unlikely rehabilitative. The relief I have felt about this, no longer having to fight the Social Security battle, has allowed me now to focus primarily on my healing as well as my ADA claim against the hospice.

*John Walter can be contacted at: ponder.river@verizon.net