One of the most difficult things that sick and disabled people encounter is the discomfort that many well and able-bodied people feel in the face of infirmity. I have felt that uncomfortability when faced with people who are disfigured or disabled in ways that I am not. I get nervous and worry about saying or doing the wrong thing. But beneath the superficial nervousness is a more visceral anxiety that makes me sweat: a deep resistance to those who are so obviously marked and limited by their fates. I have caught myself cataloguing the differences between us in my mind, as if the simple acknowledgment of our commonality would enable their disasters somehow to infect me and spoil that slim vestige of health and hope I cling to in my own corner of misery.
|Before the advent of modern medicine, people gave thanks for good health, counting it as an unexpected blessing.|
Likewise, I have come to realize that many people are deeply disturbed by my continuing illness; they want to help but also need to reassure themselves that disasters like disease can be avoided and, if necessary, easily remedied. It's hard to swallow the fact that we have little or no say over the extent and timing of our illnesses.
Before the advent of modern medicine, people gave thanks for good health, counting it as an unexpected blessing. Now we've come to assume well-being and regard illness as a temporary breakdown of normal "perfect" health.
Myths, fairy tales and great works of literature, which abound with cripples and hunchbacks, one-eyed monsters and big-nosed lovers, suggest that these abnormalities are not only normal but somehow necessary in the plot of life, they shape our characters and destinies, forge our greatnesses and smallnesses, while entertaining and instructing others. However, that sensibility has been lost in recent years. People go jogging three months after a coronary, undergo surgery to correct upturned noses, starve themselves to lose weight, risking health and wealth to attain some mythical ideal of the norm.
In a perversion of recent discoveries of body-mind unity, self-help books encourage sick people to cultivate positive attitudes--faith, hope, laughter, self-love, and a fighting spirit--to overcome their diseases. As a result, many sick people are shamed by friends, family, or even their healers into thinking they are sick because they lack these "healthy" attitudes, even though illnesses often accompany critical turning points in our lives, when it is necessary to withdraw, reflect, sorrow, and surrender, in order to make necessary changes.
|I knew my illness was showing me facets of truth that I had missed--we had all missed, it seemed--and desperately needed.|
"In health," wrote Virginia Woolf, "the general pretense must be kept up and the effort renewed--to communicate, to civilize, to share, to cultivate the desert, educate the native, to work together by day and by night...In illness this make-believe ceases...We cease to be soldiers in the army of the upright, we become deserters. They march to battle. We float with the sticks on the stream, helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time in years, to look round, to look up--to look, for example, at the sky."
When I'm well, I tend to fill my days with a multitude of meaningful activities--my counseling practice, my writing, a lover, friends and godchildren, political involvements and spiritual practices, but when I get sick, even with minor ailments, I lose my motivation. After six months of chronic fatigue syndrome, I could not remember why I had ever wanted to hike those trails, teach those classes, or attend those meetings. Nothing seemed worth doing--and that awareness shimmered with power.
|Sickness, by these definitions, is not only a breakdown of normal health, but a personal failure.|
Even at my sickest, when I was spending the majority of the daylight hours in bed aching, I knew my illness was showing me facets of truth that I had missed--we had all missed, it seemed--and desperately needed. I did not want a quick cure that would tear me from those insights, though I could not admit that to most friends who wished me a speedy recovery; I wanted to find a way to carry my sickbed revelations back with me into health, to balance the lopsided optimism, confidence, and activity of my earlier life.
The traditions of white Western civilization have taught us to ignore and deny the sensations, instincts, dreams, and revelations our bodies continually generate to maintain a life-sustaining equilibrium. Now that I am sick, I am appalled to think that I used to respond to tiredness by pushing through it like a bulldozer to get my work done.
There is nothing like a serious illness to blow down our fragile houses of sticks and straw. Standing amid the rubble of their lives and thoughts, people with serious illnesses undertake the task of building a new house, a new way of living, one that holds closer to the ground of being, the feedback and teachings of their bodies and souls.
Dr. Arnold Beisser, who was paralyzed with polio in young adulthood, wrote of having to drop the struggle to "make something of myself and find a place in the world" through "acts of will and effort" and learn to "surrender and accept what I had become" instead. We learn, as Beisser did, to stop comparing ourselves with others, with what we used to be able to do in the past or hope to be able to do in the future, and to simply accept ourselves the way we are. Beisser wrote that this simple self-acceptance made him feel whole for the first time ever, even though he was still bound to his wheelchair.