My Body Onstage…and Off

Prior to illness, my body usually stays out of my consciousness unless I choose to bring it “onstage” for acts of pleasure or mastering new skills. In the background, it stays quietly at the ready, like a servant in a PBS British period drama—capable, unseen, unheard.

Riding my bike to work, enjoying sex, tossing a football with my daughter or son, relishing the sensory favors of intoxicants, putting eye and ear in the service of paintings and music, are all occasions when I want to take some notice of how my body moves, responds, and quickens.

I assume it is able to perform the routine actions of everyday life. In a fluid suite of actions that require little or no conscious attention, I turn the ignition key, engage the gears, press the accelerator pedal, and drive off. I talk and walk, carry a cup of hot tea with no fear of tripping, falling, or spilling.

I type, focused on finding the right word without giving my fingers the least thought. I read, engrossed in the plot and rarely concerned about the neurophysiology and biomechanics of vision. These well-practiced ensembles of movement and meaning—”kinetic melodies,” in A. R. Luria’s phrase—are built up over time through ordinary use and intentional practice.

My body is always with me. Awake or sleeping, well or ill, in infancy or old age, during puberty or pregnancy, the ultimate fact that “I” am embodied never goes away. But because I have a body, I am alive, lusty, and limited. I am dependent on the environment and others and subject to the certainties of aging, loss, and death.

With the onset and progression of chronic illness or disability, however, the relationship between my body and the “I” is altered. After all, the person who has no signs or symptoms the tumor that grows treacherously and unknown deep inside his brain neither experiences nor construes himself as ill, despite the threat the growth poses to his existence.

But now my formerly absent body becomes present in a way that my ego does not intend. My attention is yanked away from the “I-witness” world of everyday life to the body-focused world of illness and pain. It is this change in the gestalt of consciousness and being-in-the- world that is central to the experience of illness.

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