Today, we tell the story of an illness. The
University of Houston's College of Engineering
presents this series about the machines that make
our civilization run, and the people whose
ingenuity created them.
Two recent books signal a
shifting view of medicine. In 1993, Anne Hawkins
wrote Reconstructing Illness. She invents the word
pathography -- the patient's story of
his illness. In 1995, Arthur Frank wrote The
Wounded Storyteller. Frank talks about the
narrative power that the wound gives the
storyteller. Both stress how important it is for
the wounded person to tell about the wound.
"Stories," says Frank, "repair the damage that
illness has done to the ill person's sense of where
she is in life and where she is going." He tells of
a woman, long since declared medically recovered
from a cerebral aneurysm. Her body still suffered
muscular asymmetries. She was still afflicted with
occasional double vision. The word "cured" meant
medicine had done all it knew how to do.
The woman referred to her stroke as her ethnicity
-- an outwardly minor, but inwardly essential, part
of her being. Only in telling the story of her
illness, could she finally take her recovery beyond
the point at which medicine declared its job done.
We all undergo recoveries. In the process, we're
repeatedly called on to tell the story of our
illness. We usually answer in the technical
language of medicine, distancing ourselves from our
own bodies. We also recognize an unspoken
obligation to be on the road to wellness.
"The jaw was broken and four teeth knocked out. It
took years of reconstructive surgery," says an
accident victim. Not, "My jaw!" and never mind that
her face will never be the same. Our ethnicity does
change after illness. Our road in life really is
redirected.
It takes another language, a subjective tongue, to
reveal the wound in terms medicine cannot address.
If the storyteller chooses, or dares, to engage
that voice, then the illness emerges as the
transforming experience it really is.
The doctor's "case report and [the patient's]
pathography," Hawkins tells us, "are mirrors set at
an oblique angle to experience: each distorts, each
tells the truth."
That idea first hit me when I read the diary of
18th-century author Fanny
Burney. In 1811 she suffered one of the first
mastectomies, long before the use of anesthetics. A
year later she finally gave voice to her
soul-searing story -- but then only in her diary
and only once. The entry is followed by the
surgeon's much briefer account. Taken together they
give us a chapter in the history of fighting cancer
that we'd otherwise never have.
If I were a doctor, I'm sure I too would need
distance. I too would try to separate the illness
from the patient. I too would limit my arena of
combat with illness. But these new books remind us
that mind and body are one. Both the recovery from
illness, and any full understanding of illness,
have a huge dimension which modern medicine is
still struggling to see clearly.
I'm John Lienhard, at the University of Houston,
where we're interested in the way inventive minds
work.
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