Casualties of Progress

Personal Histories from the Chemically Sensitive

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I remember when I met my new attorney in December 1998. I asked him what they pay someone who loses a limb. He told me. Then I asked him what they do for someone with an amputated life.

I can no longer keep a cherished dog or go to a concert or joyfully join in fun and games. I haven't had sex in four and a half years - enough said. I haven't done much of anything in four and a half years except lie around a lot and try any medication, treatment, or protocol that holds promise...

This is a reality understood only by those who have experienced it. Those who have no such experience may or may not be sympathetic, but by and large they have their doubts. I know these doubts because when I practiced law I had a client whose case rested on whether she really suffered from chronic fatigue syndrome. I knew she was suffering, but at the same time I always felt she could pull out of it if only she would tug harder at those proverbial bootstraps.

Believe me, bootstrap yanking doesn't work. I've tugged at everything I could get my hands on, and such tugging often only makes matters worse.

Just last week I started to read a magazine, and it turned out it had a perfume strip in it. I got nauseated immediately and got a headache; I felt so sick I had to go to bed. The next morning I was still nauseated and was wheezing, so I had to go to the hospital. They kept me there a couple of days.

I once read a study that said the average American spends 98% of the day inside. I've reversed that proportion and spend 98% of my time outdoors, sleeping on my patio and cooking there on a hot plate. I use my house as an oversized closet, storage area, and bathroom. I've been basically living outdoors for twenty years now.

I have been told that early retirement is the American dream. Early retirement because of disability and a chronic, progressive illness is nothing but a bad dream, involving the loss of family, home, career, friends, mobility, income, and one's health, almost everything one holds precious.

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