Monday, July 27, 2009

Early Memories: Falling Ill and Recovering (almost)

I came down with ME-CFS in 1987. I remember the precise day: the first Saturday in May, the day after classes ended, just a week after my boyfriend moved in. I woke with a mild flu that sent me back to bed as soon as I tried to prepare breakfast. I rested a bit more, ate breakfast, but couldn’t do the dishes.

“I’ll take care of them,” Boyfriend said. “Rest and get better soon.”

We both thought I’d recover quickly, as I always did from colds, flu, and mild gastro-intestinal bugs. Who had time to be sick? I was a busy college professor climbing the ladder to success. I had just completed a delightful junior research leave. Ideas for books and journal articles were sprouting like mushrooms. I couldn’t wait for the semester to end to write them up. Three months of delicious, sun-drenched days spent languorously at my home computer.

But Fate had another plan. Back in bed, I pulled out a stack of magazines. As I read, my eyes closed as if I were nodding off. But as soon as I’d put the magazine down and tried to sleep, I’d feel wide awake.

A few days later, I felt marginally better. I willed myself to the office, forcing myself to attend to my duties with a low-grade fever and slightly swollen glands. I went grocery shopping, but my body protested by unexpectedly dropping the grocery bags from my arms as my strong muscles turned to Jell-O. My brain went on strike, refusing to recall common words like fork and spoon in the middle of sentences, which led me to take up behaviors like pointing and stuttering as if I were an idiot. My boyfriend eyed me with suspicion and kept his distance.

The days turned into weeks. The weeks dragged on. My endocrinologist suggested my local MD test EBV titers to see if I had “that new yuppie flu from Lake Tahoe.” I was relieved to get a diagnosis until I heard the doctor’s prognosis: “We had sixty cases on campus this year, and most of them recovered in about six months.”

"Six months?" I replied, incredulous. "I have to go back to teaching in three and have a million other commitments!"

He shrugged his shoulders and gave me one of those we're-not-miracle-workers smiles taught in Bedside Manner 101. I didn’t know how lucky I was to get an early diagnosis.

In my arrogance, and ignorance, I was convinced I could recover in less than six months. Hadn't I healed from thyroid illness three years ago, avoiding ablation through radioactive iodine? I would engage the power of the mind and positive emotions, as Norman Cousins had done and documented in his book, Anatomy of an Illness. I devised my own program of positive-mood medicine, with cassettes of stand-up comics and funny musicians. I wrote inspirational sayings on banners and posted them all over in the house. I rested everyday with guided meditations to support the immune system and exercised gently for very short periods of time.

At the end of the summer, I was no better off than I'd been at the beginning. I realized with horror that the doctor’s predictions were true! My brain, my precious brain, the brain I had never really appreciated wasn't working the way it used to. I could no longer organize simple things. Balancing my checkbook was a hellacious stress fraught with error. My poor recall of common words (known officially as paraphasia) would be a serious liability in the classroom. Worse, crying spells were undermining my conscious efforts to cultivate laughter and joy.

Fear rumbled in my belly. No, I could not, would not, become a victim of illness. But the next day in my post office box, a newspaper clipping or magazine article from a well-meaning friend would arrive, telling a story about the mysterious new epidemic and its victims, losing of jobs, spouses, and friends. I’d feel momentary panic, toss the article in the trash, and renew my determination to get well.

I need a strong proactive approach. I called my sister, a resident of San Francisco, because she was good at solving problems and good at listening. Moreover, she had an amazing ability to find alternative healers with solutions for every problem. She found a nutritionist who had studied the work of Dr. Emmanuel Revici, a cancer specialist in New York who once helped my sister as well as some prominent friends of my father. These two argued that cancer, and viruses, thrive in an anabolic environment but not a catabolic environment, and by using diet and supplements, set about shifting the terrain of the body.

The nutritionist had me purchase pH paper and check my urine throughout the day. I kept a record of my pH, what I ate, what I did, and how I felt. I discovered (in apparent confirmation of her theory) that I felt best when my urine turned the litmus paper yellow. When it turned green, I felt worse. Yellow is in the acid range, green in the neutral to basic range. Certain foods, like olives and meat, shifted me towards yellow. She took me off white flour, sugar, white potatoes, and coffee -- all, it turns out, good choices for one seeking to support natural healing. (Years later, I would learn that many valiant practitioners of natural healing deliberately try to make the body more alkaline, shifting urine and saliva towards green. It is an approach I would try later in life.)

During my pH diary months, I also discovered that getting chilled, tired, or stressed shifted me towards green. I became vigilant, and cautious. When I slipped up and shifted fully into the green zone before late evening (being green at night was okay) I took a nutritional product specifically formulated by Dr. Revici for a national company containing herbs and micronutrients. All this gave me a healthy sense of power over my illness. I saw quickly how what I ate, what I thought, and what I did affected my state of health.

Nevertheless, the stress of working full time took its toll. I had trouble sleeping at night, but no energy to do things during the day. My social life became restricted to Boyfriend, for conversations, whether on the telephone or in person, seemed to tire me excessively. My research projects floundered, and the long, rambling article I'd struggled to write during the summer was ultimately rejected by the journal taking it under consideration. All this, plus the physiological changes in my body, led to crying spells and periods of mild depression. Consequently, I asked the College Provost to let me go half-time the following year (also half-salary), teaching one course fall semester and two in the spring. I used the extra time to work with a psychotherapist and a massage therapist on personal growth.

At the end of the second year, all my symptoms had disappeared but one: if I got overtired, I'd feel the beginning of a sore throat. (Many years later, I would learn about orthostatic intolerance and realize I had a mild case.) I found I could control the sore throats from developing into something really annoying by sticking to a consistent routine of healthy diet and daily exercise. The regimen limited me from accepting dinner invitations, because I had to exercise in early evening to get the full benefits, but I didn't care. I had regained my freedom.