My Diagnosis-Part II

Three years later, in 1982, on a blazing hot summer weekend, my wife, my children (then ages eleven and eight), and I climbed down an embankment toward a small lake in the White Mountains of New Hampshire. Shockingly, I could not make my way back up the small slope. I had no strength in my legs, and my wife had to support me on her back and arm and drag me back to our car. Returning to Massachusetts, I entered the hospital for a second time. I left with a diagnosis of multiple sclerosis.

By Labor Day I was unable to ride a bike or walk for more than fifty yards without collapsing of fatigue, and an assortment of other symptoms had appeared. I had frequent episodes of urinary urgency and occasional incontinence. My wife reminded me and pleaded with me to go to the bathroom before leaving wherever we happened to be, but I hated the feeling of powerlessness that accompanied the realization that I needed to do such a thing.

Consequently, I often neglected to make sure I didn’t have to go, and accidents occurred. In 1982, for example, I attended my brother and sister-in-law’s wedding in New Jersey. I was taking medication to increase the holding capacity of my neurogenic bladder. I ate and drank during the festivities without regard to the risk, putting faith in my new prescription.

How relieved I was that the drug worked so effectively that I never had to make my way to the restroom at all. On the way home, however, the dam broke. Through New Jersey, Connecticut, Massachusetts, I peed and peed, helpless to control the flow. My pants, my socks, my seat, all were soaked, making it impos sible, from my point of view, to make my way to the men’s room at a highway stop. Even if I managed to change my clothes, the upholstery was thoroughly drenched; nor did I know whether my bladder had finally emptied.

During the next three years, my life was filled with changes that at the time 1 did not connect with my illness diagnosis. After all, I told myself and others, the worst part of my MS was the sadness that unexpectedly caught me on spring days when other people, alone or with partners or family, rode their bikes along the country roads and seaside ways around our town. The sense of freedom and spontaneity that such sights invited reminded me of my losses, and I attempted to keep my grief from spreading beyond the images in which I contained it. My wife freely admitted her own fear and pain, but I insisted that I was really not “in denial/’ as she suggested.

Yet within three years after diagnosis, I left the magic show and community with which I had been intimately involved since I was twenty-one years old, resigned from the hospital where I had worked for seven years, stopped the practice of psychotherapy, took a position as director of the nonprofit Institute for Human Evolution(!), resigned from that role to start up a magazine for parents, and, when that endeavor was not successful, resumed work as a psychotherapist in collaboration with a neuropsychology practice associated with a neurology group.

On a winter night in 1985, I placed my Apple lie on the kitchen table, put a filled teapot on the electric stove, and began to write a book to help individuals, couples, and families cope with the effects of multiple sclerosis. When I next looked up from the monitor, the water in the unheard whistling pot had evaporated and the pot was welded to the cooktop.

I wrote with passion and ease of the difficulties, dynamics, and strengths of people with chronic illness, drawing upon the lives of the people with whom I worked in therapy. Yet not even when the manuscript was published was I able to imagine or acknowledge that any of the events of the previous few years were linked to my own experience of, and coming to terms with, my chronic illness.

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