NARRATIVE AND MEDICINE


for the University of Texas Medical School's Series on Narrative in Art and Medicine, UT-Houston Medical School, 6431 Fannin at Ross Sterling Blvd., Rm 2.006, Tuesday, April 1, 1997

by John H. Lienhard
Mechanical Engineering Department
University of Houston
Houston, TX 77204-4792
jhl@uh.edu

This month we'll spend eight noontime sessions talking about the most neglected dimension of the problem that you're undertaking as your life's work. Your business will be that of healing the wound (whatever disease or trauma or defect that wound might be).

Medicine is now armed with a bewildering cabinet of procedures, nostrums, and tools. Doctors can do things they could hardly have dreamt of doing when the youngest of you was born. Still, doctors have given scant attention to one subtle but crucial part of healing. How to define it? How to explain it?

I had a serious hospital stay last year, and in it I, like most patients, only vaguely sensed what was missing. I didn't fully tumble to the problem until just after I'd left the hospital.

Then I ran into a strange book. You may've seen or read Mutant Message Down Under. I found it in the fiction section of a bookstore. And I don't doubt that's really where it belonged.

The author, Marlo Morgan, claims to be some sort of health professional. She doesn't say what, and she leaves us more than a little suspicious. She claims that this is a documentary with certain facts altered to preserve tribal secrets. In her prefatory material, she swears it all really happened.

The book is almost certainly made out of whole cloth, but the issue here is not the truth or falsehood of her account.

The story tells how Morgan takes a public health job in Australia and is drawn to a group of half-breed aborigine youth. She leads them into creating a small manufacturing enterprise.

One day she's called to another city to receive an award from some aborigines. They turn out to be a tribe who call themselves The Real People. They hand her a native wrap-around garment. Then, to her shock, they burn everything she brought with her: clothes, money, credit cards. Next, they march her off on what gradually turns into a four-month walkabout in the Australian bush.

It all sounds like the stuff of bad dreams. But her curiosity is stronger than her terror. As the band travels with almost no possessions, as they eat only what the land offers (leaves, lizards, insects, and one kangaroo), their purpose unfolds.

They believe that they're the last true aborigines. They concede that their world has passed to the white invaders, whom they call The Mutants. So from now on they'll be celibate and let themselves die out.

Since Morgan looks like a receptive mutant, they mean to teach her to be civilized. That way their knowledge won't die with them. This harsh journey is to be her education in the essential business of being really human. She'll be their last message to us. She herself is to be the Mutant Message in the book's title.

As she travels with the Real People, she finds intense spirituality. They live in constant contact with The Oneness, their God. Each morning they rise to sing thanks in advance for what they ask the day to bring: food, art, play. They're in tune with everything around them. They find water in the desert and make food from almost anything organic. They live without a shred of meanness or cruelty.

When they come upon the grave of a mutant, a white man, they stop to repair the broken cross over it. "Why," asks Morgan? Turns out, it's to express their grief over this unfinished human. After all, he had to've died because he was so deaf to The Oneness that he couldn't even hear where to find water and food.

Morgan knows enough pharmacology to see that their medicine reflects an uncanny use of natural quinine, aspirin, and antibiotics.

And they never let mind and body separate. They're appalled that we mutants try to treat the mind and the body as if they were distinct from one another.

Whether or not there's a shred of truth in Morgan's yarn really doesn't matter. For the story expresses a truth that's been reported again and again among African natives, the forest nomads of Brazil, northern Aleuts, and monastic orders.

From one perspective, we realize that Morgan has composed a brief against our attachment to technology. It's a brief for openness to ourselves. It's a brief against all that stunts our own humanity -- anger, greed, obsession, noise, and failing to listen.

Morgan's story left me with a deep craving to achieve the same healing unity within myself that she'd found among the Real People. That unity -- that harmony of body and mind -- is an essential part of healing the wound. Fail to find that unity, and the wound to the body will remain unhealed long after the skin has closed.

Another thing emerges. It is that the most important part of the healing of mind and body might well lie in telling of the wound. And that's where we're headed in this series.

How can mind and body be united when we deny ourselves the right to tell what has happened to us? The first step in divorcing mind and body is to sanitize the pain and disorder we've experienced. It is to spread our surgical linens over the patient so we can see only the wound and nothing more.

In 1993, Anne Hawkins wrote a book, Reconstructing Illness. In it she invents the word pathography -- the patient's story of his illness. Two years later, Arthur Frank wrote The Wounded Storyteller. Frank talks about the narrative power that the wound gives the storyteller.

Both Hawkins and Frank 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" was used the way medicine all too often uses it. It meant only that 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," the victim of a bicycle spill told me. "It took years of reconstructive surgery." She didn't say "My jaw!" and never mind that her face, though restored, is now a different face. Our ethnicity does change after illness. Our road in life really is profoundly redirected.

It takes another language, a subjective tongue, to reveal the wound in terms that reach beyond anything medicine is equipped to address. If the storyteller chooses (or dares) to engage that voice, then the illness emerges as the transforming experience it really is.

This is something the twelve-step people have known and practiced for years. If your wound happens to be alcoholism, then you'll never close the wound until you stand up in front of others and say, "Hi, I'm Frank, and I'm an alcoholic," and then go on to reveal the circumstances of your wound.

In Hawkins's book, she tells us, "The doctor's case report and [the patient's] pathography are mirrors set at an oblique angle to experience: each distorts, each tells the truth."

The meaning of that idea hit me when I read the diary of 18th-century author Fanny Burney. In 1811, Burney suffered one of the very first mastectomies, long before the use of anesthetics. She was already in her late 50's when it happened, and she lived another 29 years.

Medical historians have, ever since, tried to read the record of her symptoms to determine whether the growth was really malignant. But that, in itself, misses the point of her story.

A year later she finally gave voice to that soul-searing story -- but then only in her diary, and only once. She takes us, blow by blow, through her mounting terror and then through the ghastly torture she underwent.

Burney took pains to undergo the surgery when her husband was out of the house and when he didn't know it was happening. The way in which she cuts herself off from his emotional support sets our antennae on full alert.

Then she walks us through the ordeal right down to the point where we hear the scalpel scraping bone. I know of no one who's ever read that account without a terrible squirming discomfort.

That section of her diary ends with the surgeon's record -- far briefer and far more simply factual. There's no contradiction between the two. And, taken together, they give us a chapter in the history of oncology that we'd otherwise never have. They really do provide Hawkins's mirrors set at oblique angles.

Now: the narrative of the wound is ancient. We try to ignore it. We confuse it with simple hypochondria. But there is far more noble literature to dip into than you can imagine.

Try the poet, John Donne. Donne had two serious bouts with some unspecified illness -- some sort of fever -- one when he was 51. The second, which killed him, occurred in 1631, when he was 59.

Donne had already wrestled with the question of his death in the his so-called Holy Sonnets. And here we pick up another thread. When J. Robert Oppenheimer was asked why he'd named the atom bomb test site Trinity during WW-II, he said he'd been reading two of those sonnets.

The first was something that Donne wrote during one of those two illnesses. In a poem titled, Hymne to God, My God, in My Sicknesse, Donne said this:

... As West and East
In all flatt Maps (and I am one) are one,
So death doth touch the Resurrection.

Of course Oppenheimer had his own wound in need of healing. He was busy creating a particular kind of Hell on Earth, and here he picked up the desperate hope that some sort of resurrection might flow from his work.

But that does not make a Trinity, he conceded. And he went on to quote another of the Holy Sonnets. This one was written before Donne's illness, but listen to what it says:

Batter my heart, three person'd God, for you
As yet but knocke, breathe, shine, and seeke to mend;
That I may rise, and stand, o'erthrow mee, and bend
Your force, to breake, blowe, burn and make me new
.

And so Oppenheimer gave to the testing place for the Hiroshima bomb the name Trinity. It was quite consciously his prayer that the death he was forging might somehow blowe, burn and make new.

Death, of course, is the place where the doctor's ability runs out utterly, and the narrative is all that remains to heal us. Sherwin Nuland's book, How We Die, sat on my desk for a long time. I finally brought myself to read it after my own brush with death last year.

When I did, it was a jolt. As Nuland takes on the most forbidden topic of all, we realize that society lets us talk about politics and sex as long as we're careful. But talk of death remains taboo.

Nuland is a surgeon and medical historian. His book deals with a primary dilemma. To be a doctor is to fight death. Yet death always wins in the end. Doctors, armed with spectacular new technologies, engage in a combat they cannot ultimately win. It is a situation that becomes more paradoxical all the time.

Nuland begins by explaining death itself. And it isn't pretty. Death is invariably caused by the lack of oxygen brought on by a hundred different scenarios of system failure. It is seldom a matter of passing gently over the Great Divide. In a harrowing sequence of chapters he explains how our bodies fail in heart disease, cancer, AIDS, Alzheimer's disease, and more.

For those of us old enough to know our time is limited, Nuland's book is frightening at first. But it grows reassuring as he demystifies death. He takes it out of that place where things go bump in the night. He puts it where it can be seen and understood.

He also deals with another seldom-discussed aspect of death. It is that the old usually reach a point where they accept it. Nuland quotes Jefferson who, at 71, wrote to John Adams, then 78.

Our machines have been running seventy or eighty years and we must expect ... here a pivot, there a wheel, now a pinion, next a spring will be giving way; ... There is a ripeness of time for death ... when it is reasonable we should drop off and make room for another growth.

But Nuland's main concern is with doctors and their machines, their compulsion to win the unwinable fight with death, their frequent inability to talk candidly with patients. He tells of the reflex need to fight for a patient's life long after there's any profit in it for the patient.

Then, and here we return to the idea of narrative, he tells how he cheated his own brother of the chance to deal with his death by cancer. He offered empty hope instead of joining him in grieving the inevitable end.

In the poignant apogee of this remarkable book, Nuland quotes the hopeless words doctors tell each other when they fail to level with a patient: "I could not take away his hope." Then he adds,

Unless [we're] aware [we're] dying and ... know the conditions of our death, we [can't] share any sort of final consummation with those who love us. Without this consummation, no matter their presence at the hour of passing, we will remain unattended and isolated.

Others have certainly raised questions about the technologies of preserving life. But Nuland, coming from the very center of those technologies, tells us what every technologist in every field should understand, and what medicine too often fails to understand:

It is that we cannot let the objective purpose of our machines become ends in themselves. The true purpose of any machine can only be shaped by the people it is meant to serve.

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.

A hospital chaplain I know told of a surgeon who often had to tell relatives that the patient had died. His style was to fix his eye on a point just over their right shoulder and bluntly recite the circumstances of death. He was well known as a heartless sonovabitch.

One day this chaplain fell into conversation with him in the surgeons' lounge. One thing led to another, and soon the surgeon was pouring out his pain over the whole business. His own wound was his inability to cope with other people's pain. Suddenly -- maybe for the first time -- he gave voice to that wound. He'd found the point where his own healing could begin.

Death, the recovery from illness, and any full understanding of illness, all have a huge dimension in common. And, I tell you, it is the dimension which remains almost invisible in the practice of modern medicine.

One doctor who sees all this with remarkable clarity is the wonderful essayist Lewis Thomas. Thomas went to medical school in 1933. His father had been a doctor -- his mother, a nurse. Midnight house-calls were the norm.

As town GP, his father talked to people. He explained more illnesses than he cured -- illnesses like heart failure, tuberculosis, and tertiary syphilis.

You could ease a failing heart with digitalis, if you were careful. You might try collapsing a tubercular lung. You could only stand watch over advanced syphilis.

You couldn't cure any of those diseases. Doctors spent much of their lives standing watch and explaining to people how they were condemned to die.

That's the life Thomas chose to follow. He studied the late-19th-century medicine of Osler. He learned to comfort the incurable. But all that was about to be swept away in a new whirlwind.

One storm warning for Thomas was a doctor named George Minot in the hospital where he interned. In 1921 Minot had developed severe diabetes -- one more hopeless disease. That same year, a group of young doctors in Canada isolated insulin. They won a Nobel prize, and Minot's life was one of the first they saved.

Four years later, Minot also did something to win a Nobel Prize. He found that another incurable ill, pernicious anemia, could be cured, after all, with liver extract. We later learned that liver supplied a nutrient called vitamin B-12.

So, while Thomas interned, we learned to cure incurable diseases. And those new hi-tech miracles soon lived a life of their own. Tuberculosis yielded too easily to antibiotics. We didn't notice until too late that we'd bred virulent new strains of TB.

We've almost wiped out syphilis, but how? By blindly overdosing flu victims with penicillin! Surgery offers a vast, if detached, arsenal against heart failure. Thomas began tracing his father's footsteps, then found himself on another road entirely.

So he titles his autobiographical account of modern medicine, The Youngest Science. For medicine did turn into modern technology and science while he was in medical school. Still, he remembers how his father touched patients and talked to them.

The sick need that as badly as medicine. They need to be touched. They need people who can tell them what they're afraid to hear. And above all they need to convert their illness into the transforming and healing narrative.

We've lost more than house calls, Thomas says. The new machinery of healing has become a barricade against the sick. For two generations, physicians forgot how to be with their patients. The thread of narrative has been fractured, and the break has been too long -- too complete.

Now medicine must relearn his father's forgotten skills, but from the beginning -- a little like children, first learning to speak.

Let me finish today with another poet, Houston's own Vassar Miller. Vassar Miller suffers severe cerebral palsy. At her best she was barely able to walk. And now that ability is gone. She speaks only with great difficulty. She's a superb poet. She's been nominated for a Pulitzer Prize and she's been inducted into Texas's Hall of Fame for her fine work.

Try a few lines of her work. Here's one that articulates her pain in a way almost too terrible to repeat. It's called Nuptial Benediction.

Though beauty has not made your bed
And grace has not composed your limbs,
Your lust with eyes put out has led
Your step; though few of Cupid's whims
You can obey like love's athletes,
Though you disrobe, so some might guess,
For crosses, not for marriage sheets,
Close here the gash of loneliness
Like nimbler lovers; though you urge
Your passion on with less precision --
May your twin blindnesses now merge
In one beatitude of vision.


That beatitude of vision is Miller's ongoing narrative. Try another one: Crone's Cradle Song:

            Hushed hands, before you fumble
Into knot and gnarl,
Fixed feet, before you stumble
Weaving steps asnarl --
Much prefer
Stillness without stir.
            Mute mouth, before you break
Song against your tongue,
Lax lips, before you make
Music Weird-and-wrung --
Silence dance
Down such dissonance!
            Body, before you race
            Brain and blood and breath
Against the grain of grace,
Bend birth back to death --
Lullaby,
Given leave to die.

Vassar Miller is now 73 and wheelchair-bound. Her wound is lifelong, and it never was within medicine's reach. But her poetry is the ongoing narrative that transforms her wound into a thing of glory. It's also the means by which she copes with her terrible wound.

And so it is for all of us as we struggle with our many wounds. What essential difference separates the wound in J. Robert Oppenheimer's soul from your patient's wounded kidney or broken leg? For the soul and the body are bound to one another.

Do you want to see your patients healed? I suppose that might be possible without hearing their stories. Can someone else listen to their narrative while you heal their bodies?

Perhaps. But watch out. Remember the doctor that chaplain told me about -- dying on the inside while he doggedly tried to keep hydrogen and oxygen unjoined in the same container. A conflagration was sure and inevitable. For you too carry your wound and, in the end (the best doctors will tell you), it is your patients who will heal you.


SOME SOURCES

Reiser, S. J., Medicine and the Reign of Technology, Cambridge: Cambridge University Press, 1978.

Nuland, S. B., Doctors: The Biography of Medicine, New York: Vintage Books, 1989, Chapter 6.

Morgan, M., Mutant Message Down Under. New York: Harper Collins, 1994.

Frank, A. W., The Wounded Storyteller: Body Illness, and Ethics. Chicago: the University of Chicago Press, 1995.

Hawkins, A. H., Reconstructing Illness: Studies in Pathography. West Lafayette, IN: Purdue Research Foundation, 1993.

Donne, J., John Donne: A Selection of His Poetry. (John Hayward, ed.) Baltimore: Penguin Books, 1950.

Nuland, S., How We Die: Reflections on Life's Final Chapter. New York: Alfred A. Knopf.

Thomas, L., The Youngest Science: Notes of a Medicine Watcher, New York: Bantam Books, 1983.

Miller, V., If I had Wheels or Love. Dallas, TX: Southern Methodist University Press, 1991.