Written by Susan L. Clarke
About living with chemical sensitivities
Invocation
Oh God, in whose image we are all made, give us courage to embrace our family of earthly sufferers. Your creation, as we embrace you; knowing that our bonds in suffering bring insight, empathy, healing, and joy. Amen.
PROVERBS 24:11-12; JOHN 9:1-3
IN MY DREAM, I dove into a bubbling stream and resurfaced on the far shore in a glistening white gown. A wide field with groves of trees spread out before me. Musicians appeared with instruments of every kind and, beyond them, a huge choir. I lifted my baton, like a wand, to elicit the beauty of the whole. Glorious music suspended us all in heavenly bliss.
Waking, I was struck by the loss of my dream to be a conductor, for which I had sacrificed much. In 1985, I had left my parents’ home outside Philadelphia. Generally penniless and in intolerable housing conditions, I had received a master’s in orchestral conducting at the New England Conservatory in Boston. Because of a prior bout with pneumonia, airborne chemicals in cities made me ill. Nevertheless, I persevered and succeeded-to a point.
In 1988, the director of Affiliate Artists, the primary agent for young conductors, announced at the Aspen Music Festival, where I was a Fellow, that I was “one of the most talented, musical, artistic young conductors in the country.” But the cologne worn by one of the conductors there overwhelmed me, as if needles pierced my innermost sinuses at every breath. I had to leave conducting class for fresh air.
The first day of the 1991 Tanglewood Festival, fellow class members complimented me on my conducting of Beethoven. Wanting to show hospitality to the Europeans, I invited them to the lake to swim. On that gorgeous day, I floated, thinking how healthful the summer would be. A passing boat stirred pleasant waves. Water went over my head and into my left lung. As I walked to shore, I squished two dead fish apart on the bottom of the lake. I had never before seen dead fish there-they usually nibbled on my legs-but I thought nothing of it. The next morning, feverish, with the lung inflamed, I dragged myself to class.
I was extremely ill the rest of the summer and learned only when the festival was long over-and my professional prospects ruined-that the lake had been algaecided the day before the incident. In delirious fevers, I bargained, “God, if you heal me-if you give me even a little health, I’ll do anything for you. I’ll go to Washington. I’ll walk straight into the White House:” However, I was mostly bedridden for years. A toxicologist commented, “You really got dosed:”
Endless hours of painful debility, migrainous vomiting, pleas for healing, and sleepless questions-why, how, and what now-filled the decades of my prime-of-life. The humiliation of needing governmental assistance and having to fight for it repeatedly, often while homeless or living in someone else’s home, stole my dignity. Employers, hospitals, and churches refused to accommodate me. My body-temple needed a clean earth that no longer existed.
Diagnosed with permanent, disabling, multiple-chemical sensitivity disorder and common migraine, my dreams died-dreams of conducting, of health, a home, a husband, and a child. “Where there is not vision, the people perish,” the prophet Isaiah astutely notes. I nearly died many times.
Between the cracks of illness, a vision emerged. On my well days, I sat in classes at Harvard School of Public Health and scientific conferences, studying the forefront literature on toxins.
Each excursion required days of recovery. I learned to speak “scientese” and “bureaucratese”: “Laboratory mice will die within sixty minutes of secondhand exposure to many commercial perfumes. The US GAO report on neurotoxicity confirms that death in mice indicates brain cell death in humans.” Presenting at conferences, I’d put on a TV smile, no matter how ill I felt. Protecting life on earth now meant more to me than my own life.
One day I said to the kindly woman who gave me room and board, “Fran, I wish I could go to Washington and get something done.” To my astonishment, she bought me a plane ticket to D.C. I considered flying impossible with my illness. However, because of Fran’s generosity, I had to go, and I did, wrapped in barrier cloth. Three days of hellish recovery followed the flight. With my respirator and oxygen tank in tow, I plastered Capitol Hill with scientific studies, meeting with legislative aides and agency officials.
Thereafter, if I had $20 to my name, I would drive the ten hours to D.C. People advised me, opened their homes to me, provided me organic food and open windows, and tolerated vomit. On the Hill, I lobbied daily for clean air, water, and food for everyone, for protection from chemical injury. Then a miracle happened. While in a law office, where I could barely breathe, a call came in from the White House. Two days later, the materials I was distributing were in A1 Gore’s hands. The federal government recognized chemical sensitivity for the first time, through the appointment of an interagency workgroup.
Years earlier, feeling abandoned by society and God, I had knelt by the Charles River in Boston, whispering coldly, “God, why did you do it?” The last thing I had expected was an answer. Two came to mind. First, when Jesus was asked about a man born blind, whether the fault was the man’s or his parents; he answered, “so that God’s power be displayed,” and healed the man. Second, when Jesus knew a close friend was ill, he intentionally stayed away two days, allowing the friend to die. “Criminal negligence,” courts would now determine. He ultimately raised the man from the dead. Prior to the miracle, though, Jesus wept. It was hard to believe at the time, but I understood that God had not stopped caring and intended something powerful by my illness.
Today, provided that others help protect our common air, I have my health. I give expert testimony in public health science, work for justice, and write professionally. I am a flute recitalist at Trinity Church-Boston and believe I will conduct again. I have a nontoxic home and have marital prospects. My life is fuller than I could ever have dreamed. I am most grateful for the enlightenment of disability.
Reflection Questions and Activities
1. How do you feel when someone says they are reacting to your hairspray, perfume, or lotion? Do your feelings change over time?
2. Imagine you are the CEO of a chemical company. Millions of people buy your products, however, many, many people report immediate, serious medical problems in reaction to what you consider low levels of chemicals used. What do you do?
3. How should society provide for and learn from veterans of recent conflicts, many of whom have been disabled by chemical injuries and/or sensitivity?
4. Where do you think God is when we have to ask hard questions about things we don’t know much about?
5. Check the ingredient lists on your own food, cosmetics, laundry, and maintenance products, noting how many in each seem to have been created in a lab rather than in nature. Estimate how much your household spends each year on such products. Try living as a chemically sensitive person for a week, going without them. How do you feel?
Suggested Hymns
“My Heart Is Overflowing” (“The Song of Hannah”) 15 TNCH
“O God, My God” 515 TNCH
Women’s Mosaic Series 2002
UCC Women’s Resource
Margaret (Peg) Slater, Editor
