It is what it is and it’s not

Ambiguity is a major part of living with any chronic illness. In the earliest years of my illness. It shook me up quite a bit when I would awaken at 2 or 3 or 4 in the morning unable to feel my legs. I called that time my “Hour of the Wolf.” I lay there and tried to move them, which it seems I did but I had difficulty telling. They seemed so heavy and at the same time not there, as if I’ve been cut off at the waist.

I didn’t wake Sheila because I thought it was probably just a false alarm but I also felt as if this is it. maybe this is the event that would place me in a wheelchair or leave me less mobile than before. Maybe this is the morning I’d be unable to walk down stairs, go to work, or care for the children. Or maybe these were just transient discomforts, soon to pass, leaving me physically no worse.  

I tried to get my legs over the bed onto the floor and I tested them to see if they would still support my weight there was so stiff. But I got myself up and started walking slowly around the darkroom, balancing with one hand touching the wall. As my legs limbered up, I got around the house, pleased that I could walk, but unsure whether my legs were worse off than before.

Back in bed I lay awake thinking about disease, disability, and death and cradled in the arms of philosophy,  would drift off to sleep. In the morning, usually no worse other than weary, I would go about my day. I felt as if mortality had been whispered in my ear and I wished  that my awareness of life’s fragility enabled me to be more compassionate toward others. Adjustment to chronic illness and its unpredictable course is not a once-and-for-all event for us never to be faced again.

As with human nature, a particular chronic illness affects all of us in identical ways, some of us in similar respects, and some of the stuff of my illness is mine alone,–unique, distinct, unrepeatable. We and our chronic illness experience are sui generis. The ambiguity of severity, course, and outcomes is universal and unknowable. For some our  illness is relatively benign with minor symptoms that impact minimally upon our  functioning.

For other of us,  it is from the start a terrible scourge  affecting movement, balance, coordination, vision, pain and the mind in rapid and disheartening succession or simultaneity. Our symptoms might progress to a certain level of impairment,  use of a cane or wheelchair, for example, and then remain more or less stable for many months or years until there is a new collection of symptoms.

And then Just as we think that the waters of change are calm and smooth sailing lies ahead–Wham! Neither complete stability nor an inevitable downward progression is typical of most chronic illness but what we must expect is the unexpected. Most of us with chronic illness go through a back-and-forth process of adjustment. And because each change, no matter how small it appears, can alter the physical, psychological, and social conditions of our lives , the need to adapt to change itself becomes intensified. with chronic illness uncertainty about the future never ends.

Any of us might interpret minor changes in how we feel, no different than the normal variations in mood that anyone might experience, as evidence of an worsening, and each exacerbation we might think of as a first step toward further and possibly total disability. It’s easy to see how the chronic threat of exacerbation can play upon our anxieties to such a degree that the fear itself  constitutes an existential threat to our well being. Over time we work to not be flooded by the chronic anxiety and fear  present in the early stages of adjustment. This is an ongoing task because just as my chronic illness, no matter how personal, is always changing.  

Some of us have difficulty tolerating ambiguity. We flee from uncertainty and tend to see things as black and white. We  reject or discount information that reinforces or introduces ambiguity. We want clear and concrete solutions to complex problems. In politics this is the appeal of the demagogue,  in medicine of opposition to vaccination, religion, fundamentalism.  Fearful of ambiguity, we may feel very uncomfortable with meditation,  based as it is on the ability to remain present without labeling or defining to constantly changing thought, emotion, movement, sensation.    

My illness has its own biography, constantly bringing new demands and challenges. It is so important to internalize and be committed to the understanding and acceptance of “no man crosses the same river twice” because neither the man nor the water are fixed. It is what it is and it’s not. How ambiguous!

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