This is how I remember it. On a spring day in 1979, I left my car at a local service station for a minor repair. As I walked three-quarters of a mile home, I noticed that I stumbled as the toe of my left foot seemed to drag behind me and stub itself on the ground. I wondered whether passing drivers or even my neighbors might think me drunk. I let the incident pass and was bothered no more except for an occasional trip on the stairs.
At that time, I was a practicing psychologist at a children’s hospital, married for eleven years, and the father of two children. Our family owned and participated in a movie theater and its internationally respected resident stage magic company. One of my roles was to change the metal letters on the theater marquee every weekend night. As the seasons rolled into summer and fall, I experienced more and more difficulty keeping my footing as I hauled the wooden crates full of letters down to the street from the upstairs workshop where they were kept.
On Sunday show days, costumed as a toy soldier, I stood on a small platform behind a stand at which I sold souvenir programs. My leg and back would become strained before the curtain was raised and I could get down from my perch. Quickly changing into another costume, 1 rushed backstage to assist with props and make a brief appearance during one of the magic tricks.
But more and more often an unexpected urge to urinate could not be denied, and I would run to the bathroom. There were even several times when I wet myself, but I managed to conceal the stain. I spoke of these events to no one. I just carried on, assuming that most of my symptoms were psychological. The tightness around my abdomen, difficulty sleeping through the night, my urinary problems, my fatigue, paresthesia, irritability—were these not characteristic of anxiety disorders?v
On Thanksgiving Day that year, I could no longer carry on as if nothing were wrong. I had been swimming in a warm indoor pool, and when I got out of the water, my strength was sapped. 1 could barely stand or walk. Only later did I learn that an early test for multiple sclerosis was to place people in warm baths and observe the temperature’s effect on their bodies.
A severe back spasm the next day brought me to the hospital, and after reporting on my recent symptoms, I was admitted. I entered the hospital for an evaluation to rule out, as my wife saw annotated on an admitting sheet, a spinal cord tumor. Two days later, following several evaluative procedures of varying levels of discomfort, I was discharged with a diagnosis of viral lesions of the spinal cord.
I did not know that this was a label for the cause of the symptoms that were to be diagnosed three years later as multiple sclerosis. My life, it seemed to me, remained unchanged. I accepted with apparent unconcern the incidents that once in awhile literally tripped me up. I just chalked them up to the spinal cord lesions and put them out of mind. I had too busy a life to think about what had never occurred to me at all— the possibility that I might, in fact, be ill.
The idea of illness was not remotely in my mind. Physical illness was not a part of my family or personal history. As a child and young adult, I was rarely ill, nor could I recall serious illnesses among my immediate family. Even the death of my grandfather when I was thirteen seemed more a function of his old age (he was seventy-four) than of the cancer from which he had suffered.