My Grandmother's Hair

Living the Shadow

Living the Shadow

“Life … lacks form. It’s the aim of art to give it some.” – Jean Anouilh

 STANDING UP

           

“Why do I feel so buried, so entangled, so far away?”

The PhD proposal was finished not a moment too soon. I felt used up, had been feeling sick for months. Excitement about my work and looming deadlines had overridden a host of symptoms: constant aching, acute fatigue, headaches, muscle weakness and painful digestive problems, all of which made me an insomniac. Most frightening were increasingly frequent bouts of brain fog and memory loss when I could not think “in the usual way,” could not remember what I had thought or written a few moments before. I wanted to reduce the additional stress of worrying about money, so I sold my house and moved to a smaller, newly-built row house. Within days I was so completely disabled that I could scarcely crawl down the stairs to make myself a meal. Why was I so sick? What was the reason for such a complete breakdown in my life? I was terrified. I spent the next two years going the rounds of medical professionals in search of answers and being accused of doctor shopping. Tests, more tests and wildly contradictory diagnoses: “It’s all in your head,”

Separate from my body of course.

“What do you expect – you’re getting older.”

That old chestnut!

“You don’t have enough to do.”

A Ph.D. is dilettantism?

“You’re too busy.”

Oh - a little long in the tooth for academic work.

Condescending, patronizing, occasionally bewildering, but too often coldly disapproving, especially doctors who said I was not really sick. I knew that I certainly wasn’t well. I was sick, and I wasn’t getting any help in coping day to day, or with getting better. When I persisted in looking for answers I was told I had a “hostile attitude.” I tried to be polite, tried not to let my dissatisfaction and fear show. But I was angry. Who, not believed, dismissed as hysterical, wouldn’t be infuriated? It was either anger or despair, and I knew I had to choose anger or “fall into their way of thinking,” and stay sick. I found a whole new depth of experiences and feelings in that word “cope.” Two years of endless tests, of sitting in doctors’ waiting rooms bracing myself for that “here she comes again” look; disbelief and veiled criticism depleting the little energy I had, which I yearned to use for work. How to acknowledge that I wasn’t getting better, without giving up? How to crack through my rebelliousness and work out a different, functional lifestyle? Finally, recommendation brought me to a doctor who had a similar illness, who believed me, who did not give up and who referred me to a clinical ecologist. After months of investigation he diagnosed entrenched viral infection, high levels of mercury in blood and tissues, and most serious of all, chemical poisoning. But how? Where from?

Through joint detective work - how grateful I was for his patience and expertise – we eventually found the cause: 14 years of exposure to low levels of formaldehyde circulating from the psychology laboratory all through the building where I worked. The high formaldehyde content in finishing materials in the new house, like drywall, paint and carpet, was the coup de grâce. By the time I knew the reason for my illness the materials in my house had gassed off, and at least I didn’t have to move, but the damage had been done, and I was left with a depleted immune system which made me hyper-reactive to chemicals and to many foods and environmental substances: Chronic Immune System Dysfunction … Chronic Fatigue Syndrome … Chronic Chemical Sensitivities … Anyway, Chronic. I was told that because I had been exposed in late middle age it was not likely that I would ever feel well again. I had been told years ago when I fractured two vertebrae that I would not walk without assistance again. I was walking, all by myself!