In the spring of 1988 our family caught a flu virus. I was stuck in bed for three weeks with such extreme vertigo that I needed help going up and down stairs to the bathroom. Three of us did not recover.
My flu symptoms continued with, and sometimes without, the debilitating vertigo. I struggled to maintain my share of our self-employment as university textbook editors and our family and household responsibilities, but with sharply reduced abilities. I drew on all the discipline of my academic training to force my concentration on texts. Some days I had to stop working. I began turning down or avoiding new assignments. Our planned expansion of our business, house renovations, and my ceramics studio had to be dropped, as did my involvement in the children’s schools and the community, except for minimal church-going. Mild exercise, such as tossing a Frisbee or a bag of kitchen scraps into the compost, caused permanent muscle damage. I consulted doctors, who told me some forms of flu were hard to recover from; one suspected I might have lupus.
We were out of the country for a year and when we returned, changed doctors. The new doctor recognized the syndrome. Family members still showing flu symptoms underwent extensive testing to eliminate other illnesses, including lupus; after a few weeks he diagnosed chronic fatigue syndrome (CFS).
Another patient gave me her ME/CFIDS Checklist of Dr. Jay Goldstein, which is reproduced in the Appendix of Listening for the Light. One of three pioneering physicians, he had compiled statistics of symptoms and their frequency among his patients, a list of more than 54 symptoms of this mysterious illness. The Canadian expert in that group was Dr. Byron Hyde of Ottawa, whose associate saw two of us, confirming our doctor’s diagnosis. I learned how the syndrome affected individuals differently as well as similarly. Called “fibromyalgia” first in Great Britain, the terms are used interchangeably by most doctors. CFS also is called fibromyalgia,” “myalgic encephalitis,” and such unhelpful terms as “the yuppie flu.” Many doctors dismissed the symtoms as “mental” in the sense of “imaginary.”
It took a few days for the diagnosis to sink in: “chronic” means medical science considers this sickness incurable. My husband had more and different symptoms than mine; the other family member was essentially bedridden for a year and lost two years of high school. We struggled along with small gains and many setbacks for eight years.
The health of the middle and inner ear is essential to normal behaviour. The spectrum of human behaviour, including so-called “mental” illnesses, is generated in the ear.
After about seven-and-a-half hours of listening to electronically filtered music at The Listening Centre in Toronto, I felt suddenly as though a switch had been turned on in my head. My normal energy returned instantly. I was able to sleep soundly, handle extreme emotional stress, and return to a full and busy schedule.
You can read about this new paradigm based on the neurological relationship between the ear and the brain in Listening for the Light, Hemispheric Integration and the Ears, Ear Function in SSRI Withdrawal at http://www.northernlightbooks.ca