Mortals Telling Stories on the Threshold of Mystery

If we want a better medicine, we have to become better patients, and that means becoming better storytellers.
Appears in Fall 2015 Issue: Health Beyond The Hospital
September 1 st 2015

Medicine claims many outward signs of authority for itself—white coats, corridors with "Do Not Enter" signs, and promises of various tenuous miracles. But despite all of these, both doctors and patients are often somewhat lost, if they have any sense about them. Few people can meander day after day on the threshold of mystery, fragility, death, and God and not be at least a bit bewildered. That's probably why so many doctors fill silence with words, for better or worse. Sometimes words help a patient's story along. Sometimes doctors clamour to fill the silence when silence is all that's needed.

In order for us to harness their energy, words must be given limits. They must be moulded into a manageable shape that does some kind of work in the world. Words must get turned into a story that can actually guide the decisions a doctor makes with an ill or dying person. This requires that we understand how words stop just being "more words" and become a story. So we must ask, what is a story?

Suffering pulls against the loose threads of beauty's tapestry and awakens us to being in the world

My grandfather, who had an eighth-grade education, was a great storyteller. He figured out what a good story is by telling and listening to thousands of them. He knew that every great story starts with a "Once upon a time." It gives the listener a sense of what normal life looks like. But before long, if the story is any good, something has to disrupt normal life. A big, bad wolf needs to show up, or some greedy company needs to dump toxins in the creek where everyone in town fishes on weekends. In any case, it needs to cause enough trouble to lead to one problem after another. The first part of the story helps you understand why the disruption and all the problems that follow matter. You have to know what's been lost or you don't know what to hope for.

When I walk into a patient's room, if I'm doing my work well, I listen for their "Once upon a time." I need to know who they are because I am about to be the disruption in their story, and since I am an oncologist the disruption is usually pretty rough. There is life before I say, "Those strange-looking cells your doctor saw . . . I am sorry to say that those are leukemia cells"; and then there is life after that, with lots of challenges they never asked for but that they must try to overcome if they are ever going to find home again. Eventually the patient is either cured or not cured. In either case, the story is not over. The end of the story needs to show what they do in response to their altered world.

So much is revealed in this final part of a story, as patients live out the consequences of the disruptions to their lives. Often the stories are going to be much shorter than anyone thought, so the stakes are high. A doctor who pays attention to high-stakes story-crafting learns just how much stories matter. There is a beginning, a middle, and an end to every life, and like stories, some lives are long, some are medium, and some are short. No matter how long or short a life is, it matters. My patients lose their hair, they vomit, they have limbs cut off, and they become sterile. And often they are cured. But every patient's life is a whole life, and I have been witness to astonishing beauty in the middle of suffering.

A friend of mine, Sam Wells, wrote, "If you can't make it happy, at least make it beautiful." That's good advice for doctors and for patients; they must both name things that matter, and the words doctors choose are important for helping to shape the experience of patients. When I name "the problem," I give it a substance and a status that it didn't have before. I show its contour so that it can be a topic of conversation among family and friends: "Honey, the doctor figured out what's going on . . . here's what's happening." And like any story, once the antagonist is named, everything after is affected.

FINDING BEAUTY IN SUFFERING

Words make things happen. They can make a life better or worse. They can make the human heart feel courage, or sadness, or joy, or hope. They can make a person feel worthless, and they can rescue a person. The world of medicine is not built with shiny machines, knives, and bags of Latinate-named intravenous fluids. Those things are part of medicine, but the world itself is made up of stories that situate the person, account for the past, affect the future, and offer a sense of what to do next.

William Osler said, "It's much more important to know what sort of patient has a disease than to know which disease a patient has." I tell my residents to stay curious about the lives of their patients if they want to become great doctors. For patients, storytelling in the hospital is literally a matter of life and death. If their stories don't get told well, all sorts of terrible things can happen. This is true for an individual, but it is also true in a larger, social way as we try to understand the mystery of showing up in the world as frail mortal bodies. Stories—whether in the form of prose, poetry, painting, or song—are the work of the imagination. And it is here, in this arena, that beauty and suffering meet in medicine, even though modern medicine often lacks the language to express it. So let's step back and ask more about the relationship of beauty, suffering, and imagination in the human experience of illness, suffering, and death. Most of what I will say about this relationship is not overtly about medicine, because most of what I will say resists the idea that human fragility and mortality are fundamentally medical realities.

So much of life, though it is not about death, is nonetheless illuminated by our vulnerability to death. Suffering pulls against the loose threads of beauty's tapestry and awakens us to being in the world, just like beauty's outlandish "ta-da" in the middle of a world full of agony. This is no bland world where beauty thrusts shards through sheets of raw suffering, and suffering shows up on the doorstep of a nearly grown beauty that needs only a little more time, time that will not be given, to be complete. It is no poetically or philosophically bland world in which suffering tempts us to call beauty's terrible draw a tease toward fairyland. Beauty lends a "maybe so" to suffering, and suffering a "maybe not" to beauty. In this uncertain world of friend and foe we live and serve, and not in some trial run, but the only run we have, with each day traded for something, whether we wish to trade or not.

You have to know what's been lost or you don't know what to hope for.

For those of us who are theists, the experience of beauty reveals something about an intimately present and sustaining God. Local beauty shows up in things such as the flowers we find in our gardens. But there is also the beauty of the spider web transformed by dew, and transformed also by the trapped insect whose belly the spider pierces with fangs and fills with venom to digest the insect's inward parts for consumption later in the day. St. Paul said that each star uniquely shows forth the glory of God. Does the dew-laced web of death also show forth this glory? In his poem "Design," Robert Frost asks exactly this question.

I found a dimpled spider, fat and white,
On a white heal-all, holding up a moth
Like a white piece of rigid satin cloth—
Assorted characters of death and blight
Mixed ready to begin the morning right,
Like the ingredients of a witches' broth—
A snow-drop spider, a flower like a froth,
And dead wings carried like a paper kite.

What had that flower to do with being white,
The wayside blue and innocent heal-all?
What brought the kindred spider to that height,
Then steered the white moth thither in the night?
What but design of darkness to appall?—
If design govern in a thing so small.

Is the web's beauty gone awry? What is the reason for such a thing in the middle of the ordered garden? Frost's answer is disturbing: "What but design of darkness to appall?" How else, besides malevolent design, does the moth end up a hollow shell sucked dry and left to crumble after the web is abandoned? Is it better, perhaps, to hope there is no design? The same questions are asked often enough in hospital corridors as beauty and suffering show up on the same beloved face. Beauty is a persistent source of illumination, even as the mind's beam lands on the dining spider and the dined-on white moth; but whatever its source, the wild beauty of this universe apparently erupts from nothing tame. Whatever the complexities of evil and suffering, this at least is true: beauty appears and the fact is astonishing.

The Poetics Of Pain

And yet, everyone suffers. For those who have not yet suffered: be patient, you will. That is the weight we put in the balance, measuring for the moment beauty as a placeholder for what we value in lived experience. The wretchedness to which medicine is witness is assessed not only in absolute terms but also, and perhaps primarily, in the relative terms of that which might have been—that my eyes not be blind (so that I can see the world in all its beauty), that my child not die (so that his or her life might come to full flourishing), that my lungs not be filled with cancer (so that I might enjoy the simple pleasure of easy breathing, pleasant walks, and the hope for new experiences in the world). Suffering, when it is the object of philosophical thought, is held in relation to thought about goods lost and value missed. But the actual experience of suffering is not always cast in philosophical terms, and as the severity of the suffering increases it is not cast in any terms at all, for some kinds of great suffering are beyond the last beacon of language available to us. Indeed, there are some kinds of suffering that demand silence, suffering that would only be accentuated were we to attempt to speak. Whole languages have been rendered incoherent in the face of some kinds of suffering.

We persist, nonetheless, in writing poems and plays about suffering. On the tragic stage we do not gather as witnesses gather around one who is in the throes of actual suffering. All who gather around the stage either have suffered or shall suffer, but we gather for a different purpose. On the tragic stage suffering of some sort is portrayed—the death of a beloved child or spouse, social ruin, moral abomination. There are inadvertent horrors, intentional promulgation of injustice for the sake of personal gain, the fall of the great, or, more poignantly in some cases, the fall of the average person for whom what little good that had accumulated in a life is lost through some avoidable error, with the disproportionate consequence that an unrepeatable life is rendered bankrupt. Why do we write such poetic portrayals of suffering?

Certainly some come to the theatre for the spectacle of the thing, either a spectacle of horror or one of sentimentality. Aristotle notes this purpose in his Poetics, and he dismisses it as the result of a lack of insight into the nature and value of tragedy, but also acknowledges that spectacle will go on because spectacle sells. We may go to the theatre for a chance to consider our condition, our vulnerability to suffering, which goes quite deep. We may go to approach, in dramatic concreteness, the very situations that press upon us the meaning and urgency of our own life-structures without having to sort through them in the middle of real crisis. Portrayal of common suffering may allow us to identify something important about our own circumstance, addressing the solitude that certain kinds of suffering bring when suffering is associated with shame. It may serve as historical reminder, an opportunity to relive an experience when we have healed somewhat from the actual experience of suffering: whatever the medium (film, play, book, poem), such is the case with large moral horror such as the Holocaust, slavery, 9/11. And we may go for preparation, moral shaping, a kind of warning—if you are thinking about infidelity, there are many portrayals that might give you pause, from Madame Bovary to Fatal Attraction.

The poetic experience is made public through the poetic line, and the tragic stage is made public through the expression, gesture, interaction, or even the absence of actors. This latter aspect of the public character of suffering— absence—plays an important role, whether it is the absence in Waiting for Godot, the absence in the brokenness of Paul Celan's poetry, or the absences in Elaine Scarry's The Body in Pain. The kinds of things that can seem importantly absent in the middle of suffering are God, coherent language structure, an integrated self capable of virtue, hope, love. Ruin is often best portrayed and considered in relation to absence. Absence on the stage is portrayed either in the form of a hope thwarted and unfulfilled, or something of great value (or small value made great in bleak contexts) that is lost.

Suffering on the stage, whether the tragic stage or the philosophical stage, tends to be a human-sized portrayal of suffering, whether it is Socrates on the deathbed, Aristotle in the lecture hall mourning annihilation, or Epicurus in the garden. Suffering on the stage assumes the residual hope that it is worthwhile to explore what it is to suffer, as though that might deepen our understanding and insight, and perhaps even prepare us. Such portrayals are characterized also by the sense that such deepening and preparation matters, and matters at a purely human level, whatever the gods may think.

When scientists begin to talk about the proper ends and goals of humanity, they have stopped doing science and started doing the imaginative work of philosophy and storytelling.

Love is the starting point for understanding this, because with love comes the possibility of loss such as we witness in the dark night of the soul, anxiety in the face of unutterable suffering, and, at the centre of the Christian story at least, the words "My God, my God, why have you forsaken me?" The response of lament without explanation is a response lived in the intensive care unit every bit as much as the response of gratefulness when beauty erupts in the maternity ward. Lament is a way of living one part of life, it is a gamble, and it is by no means populated only with quiet patience or some other caricature of religious response. Even from within a Christian worldview, questions hound the mind in the form of lament—how long, oh Lord, how long? Why have you forgotten your people? Why have you forsaken me? Such is the language of so many of the Psalms, a poetry of lament in which sometimes even the perception of God's absence in the middle of suffering is itself lived in relation to the reality of a God who creates and sustains the local universe.

The Limits Of The Medical Imagination

That said, few would turn down the chance to trade an explanation or felicitous expression of suffering for resolution of suffering. Whatever the admirable qualities of Socrates's calmness in the face of death, likely most would prefer a delayed death to a philosophical death. This is a caricature, but one meant to make the point that the person who walks in with antibiotics for infection, chemotherapy for cancer, and morphine for pain is answering a question about suffering that allows flourishing. Suffering certainly can contribute to character, but it does so as something through which we maintain equanimity despite. That despite indicates something different from the value of love, creation, generosity, insight, contemplation, great food and wine, music, and so forth. And because suffering interrupts so many other good things, we not only welcome suffering's relief but also feel obliged to relieve suffering in others where we can, and we give high praise to those who find new ways to cure and to decrease suffering.

The first mother who ever "kissed and made it better" intervened on suffering in a good and noble way. Though avoidance of suffering is not, on most accounts, the highest good, and though there are some goods for which one is willing to suffer, still, relief of suffering is a prima facie good. And even those who would elevate relief of suffering higher than most in the hierarchy of goods (if there is such a thing) tend to cast their rationale in terms of maximizing the opposite of suffering (as with Jeremy Bentham's utilitarianism, in which there is surely no hierarchy of goods, but in which maximization of pleasure is the currency of moral economy). There is no moral system I know of in which suffering is not viewed as a problem to be solved. But suffering is viewed this way because the story told by the moral system shows us why we ought to relieve suffering. Facts alone will not get us there, any more than facts alone make a compelling story. Moral systems yield duties. They don't give us hope.

Medical science, despite fits and starts, has made amazing advances. In the process, the optimism that science will be able to solve all suffering has grown steadily, from Vesalius's De fabrica corporis humana (1545) through Thomas Sydenham's classification of diseases and the consolidation of a scientific approach to medicine embedded in the new medical curriculum of Herman Boerhaave. Medicine became the benefactor of humanity as it introduced not only new approaches to anaesthesia and analgesia but also new promises for curing disease and lengthening life. This optimism has continued to this day. But the tenacity of optimism in medicine is often the product of telling only part of the story instead of telling the whole story. Why?

First, the trajectory is long, and so whatever hopes grow that a cure will be discovered for the cancer I have today, that hope is not likely to be fulfilled for me. I will die. Progress in medicine, therefore, applies to humanity as a whole more than it does to individuals. Hope for progress is future oriented, and it makes sense only from the vantage point of a philosophical style that coherently values the future well-being of generic humanity. The application of available technologies to the disease or suffering I am now encountering does not require the same posture toward generic humanity, but we often live at the limits of medicine's capacity, especially as we age and always as we die. This optimism requires a very specific story about what matters in the universe if it is going to make any sense at all. It requires that I care about a future humanity who will exist far beyond my individual presence on earth, even as I hope that whatever technology and interventions exist now can be used to help me.

This raises the second point: help me do what? The expanded version of this question is: help me do what, and at what cost? The difficulty with viewing suffering as a problem to be solved is that the question, to what end are we solving this problem? is not a question amenable to scientific exploration or answer. This categorical error can create enormous new kinds of suffering, and presses the second half of the question—at what cost?

The approach to suffering and death as a medical problem to be solved uncovers the familiar but important distinction between advances in knowledge about the facts of nature, and advances in knowledge about how to manipulate nature toward some end. The discovery of the ways nature works is the task of science. The application of that knowledge to some end is the task of technology. But the determination of ends proper to humanity is the task neither of science nor technology. When scientists begin to talk about the proper ends and goals of humanity, they have stopped doing science and started doing the imaginative work of philosophy and storytelling. And nothing about having a disposition toward, and talent for, natural science and technology guarantees a scientist's stories about the universe as a whole are reliable. If the success in scientific investigation is lent to the philosophical stories, they can become dangerous.

There are two ineffective responses to the centrifugal and dissipating forces of suffering that dissolve and squander the value of organizing forces. The first is to ignore suffering. The second is to be undone by suffering. But if we find a true story, we might start by being disturbed, understanding disturbance as the kind of thing that awakens us to what matters in the world and deepens our sense of longing in the face of beauty, the inner movement of our experience of love, or our urge toward prayer, supplication, lament. If we are shaped by a good story, we can attend to the suffering that comes our way, even inviting it to come our way as a pastor, a doctor, a relief worker, or as a parent, a spouse, a friend. In the cauldron of suffering and loss we learn what love is, and we find our way as we tell the stories that shape our lives, the stories that shape the complex reality of being in the world. These stories tell medicine how to serve us better, because the stories show who we are and what matters. But if medicine is going to learn to hear the stories, we have to learn to tell the stories. We would be foolish to ignore this. Intensive care units all over the country are full of unhappy people who forgot how to tell their story, and who let medicine tell their story instead. If we want a better medicine, we have to become better patients, and that means becoming better storytellers.

 

Raymond C. Barfield is Professor of Pediatrics and Christian Philosophy at Duke University in Durham, North Carolina. He received his MD and his PhD (in philosophy) from Emory University. He is a pediatric oncologist and palliative care physician with an interest in expanding the role of the humanities in the formation of physicians. His books include Life in the Blind Spot (poetry),The Ancient Quarrel Between Poetry and Philosophy, The Book of Colors (a novel), and most recently a book of philosophy called Wager: Beauty, Suffering, and Being in the World. Later this year his book-length poem called Dante’s New Moon will be released. Currently he directs the Medical Humanities Program for the Trent Center in the Medical School, and teaches courses at the intersection of theology, philosophy, and medicine in the Divinity School.

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