Health Humanities Reader

Therese Jones, Delese Wear, Lester D. Friedman

• Publisher: Rutgers University Press
• Year: 2014
• ISBN:
  9780813573670
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Over the past forty years, the health humanities, previously called the medical humanities, has emerged as one of the most exciting fields for interdisciplinary scholarship, advancing humanistic inquiry into bioethics, human rights, health care, and the uses of technology. It has also helped inspire medical practitioners to engage in deeper reflection about the human elements of their practice.In Health Humanities Reader, editors Therese Jones, Delese Wear, and Lester D. Friedman have assembled fifty-four leading scholars, educators, artists, and clinicians to survey the rich body of work that has already emerged from the field—and to imagine fresh approaches to the health humanities in these original essays. The collection’s contributors reflect the extraordinary diversity of the field, including scholars from the disciplines of disability studies, history, literature, nursing, religion, narrative medicine, philosophy, bioethics, medicine, and the social sciences.  With warmth and humor, critical acumen and ethical insight, Health Humanities Reader truly humanizes the field of medicine. Its accessible language and broad scope offers something for everyone from the experienced medical professional to a reader interested in health and illness.

Part I

Disease and Illness

Chapter 1

Being a Good Story

The Humanities as Therapeutic Practice

Arthur W. Frank

Certain people remain especially vivid in my memories of the years I spent speaking to illness support groups. One was a man I met at a prostate cancer group. He challenged what I was saying, and I have been trying to respond to him, in different ways, ever since.1

I was there to talk about how to make illness something worth living with, which is a notch up from simply living with illness. This fellow was probably the age I am now—mid-sixties—lean and gray, looking like he had lived a physically active life. He spoke without much affect, yet forcefully. His statement was nominally phrased as a question, but it was a form of testimonial. He asked what all this meant when you were in pain all day, scarcely able to move. His life at that point seemed completely rooted in his ill body, and that body offered only pain, little more of capacity or interest.

My response to him tried to tread an ultra-fine line: recognizing the reality of his pain but suggesting that he was well enough to get to this meeting, and so maybe he could find other ways to re-create a life around his pain. One of the most difficult messages to convey without seeming to blame people is that they do have a basic choice: either allow illness to determine their lives, which was the position this man assumed, or seek the energies to sustain a life that is more than illness. That message is all the more difficult to convey because it is much easier to speak from a position of health than to practice while being ill.

Even healthy people who have been ill fairly recently, as I had been when I spoke to that group, risk making it sound too easy to live with illness. We are like skiers standing at the top of an especially steep slope. From the security of that stationary perspective, every turn we plan leads naturally to the next planned turn. It’s easy until we’re in motion. Then nothing seems as it was when we surveyed the hill as an abstract problem. The man at the meeting who challenged me was actually on the slope; I stood at the top, contemplating it, and there was something pretentious about my shouting down advice to those from whom I stood apart. And yet he needed advice. He was not moving through illness; he was stuck in his pain. A great danger of pain is how it can immobilize a person. Pretentious as advice may be, people sometimes benefit from it. My memory of that man introduces the dilemma of the humanities when they address both those who are ill and those who care for them.

To put the same fable in different terms: perhaps everything I write now, in health, is a message to my future self when he is ill. I hope some of the messages get through when he needs them. I hope they can penetrate the loss and fear, the fatigue and demoralization of illness. I hope they remind me of how I might renew interest in life, find value, even take pleasure in what continues to unfold. That, I believe, is the task of the humanities: to help people find interest, value, and pleasure in words, conceptual schema, images, and imaginations. Illness is one of the ultimate tests of the reach of the humanities to make themselves relevant.

This chapter’s title is adapted from one of my favorite lines in any personal illness narrative. Anatole Broyard, writing as he lived with metastasized prostate cancer, describes the relationship he desires with his physician: “I want to be a good story for him” (1992, 45). This chapter asks how to do that. The humanities have extraordinary resources that can help ill people first to tell good stories and then in the telling to become good stories, not only for their physicians but for themselves, their loved ones, and anybody else they happen to run into. The point, I believe, is not to claim that illness is, in Broyard’s title word, intoxicating, but to elevate illness above the diminished condition implied by the unfortunate verb coping. Stories are good because they are interesting. Illness can be an interesting story.

Or to put the issue differently: “Oh, your poor distracted doctor-ridden carcass,” wrote Henry James to his brother William whose health was failing (Richardson 2006, 401). The word that makes this line most memorable for me is distracted. Henry James, who spent a great deal of his own life being a doctor-ridden carcass, knew where the true peril of illness lies—in medical distraction from living. This chapter offers ideas about one means of recovery from the distraction that too often attends illness: make the illness a story and rediscover interest in life by making the story a better one.

A few distinctions seem necessary as a preface.

A Space for Humanities in Illness

Over two decades ago, when I was struggling to find a voice and a genre to tell stories of several years when I had been critically ill (Frank [1991] 2002), four distinctions emerged as necessary to my clarity about what was happening around me and my capacity to use language truthfully. Even then, none of these distinctions was my original discovery, and today their recognition remains unevenly distributed. I think of these distinctions not as binary polarities but rather as recurring tensions.

The first tension is between illness as an experience and disease as a condition of the body. Disease can be reduced to biochemistry, while illness involves a biography, a reflective consciousness, multiple relationships, and institutions. By the time disease is imagined, it has already become illness. The humanities become necessary resources as soon as people try to live illness as more than bare disease. At least two qualifications are required. First, imagining disease is a perilous business; for example, imagination can plunge a sick person into a fearsome future that may never happen or, if it does happen, may not seem as unlivable as imagined. Second, illness and disease are always conjoined: they could be separate only in the impossible condition of the mind locating itself outside the body which is the mind’s locus of orientation for imagining, reflecting, and narrating. We tell stories not only with our bodies but equally from our bodies and as bodies. Consciousness of illness is inevitably shaped by being a diseased body, yet consciousness can imagine its body and tell stories about that body.

The second tension is between being a patient and being an ill person. The person who is ill is a patient only some of the time and in certain respects and remains many other things as well. The healthcare professions impose the term patient as a total identity; ill people are led to forget that their lives are more than being sick. In Henry James’s condolence to William, becoming “doctor ridden” is a condition of thinking of oneself as only a patient, which distracts the ill person from everything else that is going on and its significant value. To risk putting a gloss on what Henry James had the sense to leave open, the patient is distracted from each moment’s potential rediscovery of how fascinating life is—a way of living that both James brothers exemplified. Being a patient is a condition of being a character in a story told by an author who has already decided all that any character is capable of being and who requires each to remain strictly within these boundaries.2 It is a dullness that precipitates fatalism. It is the opposite of health.

The third tension is that the medical history is not the ill person’s story. When I was ill and had multiple health professionals taking versions of what they called my history, I quickly realized that they suffered from an illusion—that what they were learning about me was equivalent to knowing me as a person. The interviewer who elicits the medical history works within already-set parameters of what counts as relevant, constantly paring down what is told to fit those parameters. The medical patient becomes delimited by his or her history. If the storytelling is truly a relationship, the storyteller is invited to reinvent his or her character.

Broyard exemplifies the distinction between the medical history and the ill person’s story by alluding to Marcel Proust’s criticism of his doctor failing to “take into account the fact that he read Shakespeare” (1992, 47). I think of Shakespeare in this statement as a sort of algebraic x, standing for whatever gives a person his or her unique sense of taste and imaginative possibility. In relations of storytelling, the listener is listening for what counts as that person’s Shakespeare—what the storyteller needs the listener to know about him or herself, to appreciate that self.

The fourth tension is between the provision of treatment and the offering of care: treatment is provided as a service; care is offered as a gift. Treatment can be expressed in a monetary value; one can buy more attentive treatment but not true care. The literature on care is overwhelming in its breadth and depth. Let me suggest the care/treatment tension in the following distinctions:

• Treatment is instrumental; its objective is an end state beyond itself. Care is consummatory; giving and receiving care is an end in itself.

• The provision of treatment requires technical expertise that can be one-dimensional. The giving of care involves the emotions as well as cognition.

• The treatment provider uses his or her body as an instrument. The caregiver’s embodiment is compassionate, feeling the suffering of the one who is cared for, while sustaining a boundary that enables the caregiver to act effectively rather than becoming engulfed—another danger of imagination (Frank 2004, 121–122).

• Providing treatment involves a clearly defined boundary between one who provides and one who is treated. The relational nature of care requires a fluid, shifting boundary. Giver and receiver are both subjects, not subject and object.

• Not last but sufficient for this chapter’s purposes, treatment is untroubled by its use of power as a resource. Care is endlessly sensitive to asymmetries of power (White 2011).

These four tensions play out on both sides of the street, the side of the ill person who is sometimes a patient and the side of those who treat and sometimes care for this person. People on both sides need the humanities because they are all disenchanted, to use a sociological word.3 Disenchantment, to give it the briefest elucidation, is a condition in which surprise is rarely if ever a good thing and control is always aspired to; mystery represents a failure of rational understanding, adherence to routine trumps any benefit of innovation, and anything worth discussing is measurable, preferably in numeric form. Max Weber (1958) gave disenchantment its classic sociological formulation early in the twentieth century, but his contemporary William James truly evokes the feeling of disenchantment:

The flowers wither at its breath, the stars turn to stone; our own body grows unworthy of our spirit and sinks to a tenement for carnal senses only. The book of nature turns into a volume on mechanics, in which whatever has life is treated as a sort of anomaly; a great chasm of separation yawns between us and all that is higher than ourselves; and God becomes this nest of abstractions. (James 2010, 289)

Disenchanted illness is the body grown unworthy of the spirit, sinking into its own senses, especially the imperialism of pain, and disenchanted treatment reduces life to mechanics.

Disenchantment affects both ill people and healthcare professionals, but on any particular occasion, strategic necessity may require privileging the perspective of one group or the other. In my earlier writing, I addressed ill people’s disenchantment by focusing exclusively on their stories when it seemed that ill people’s voices were so subordinated to medicine that they needed a venue of their own in order to be heard (Frank 1995). Necessary as it may be to work only one side of the street, this approach risks obscuring the crucial point that storytelling is a relationship. To return to this chapter’s title, when Broyard says he wants to be a good story for his doctor, the doctor’s participation is crucial. Broyard’s particular resource, based on his literary reputation, was that when his physician’s participation was not forthcoming, he could publicly imagine that participation before an audience of physicians for whom he could become a very good story.4

In health care, this relation of storytelling rests on a fundamental asymmetry. The ill person is the one whose life is being reduced to the bare facts of disease and its progression. Healthcare professionals (a designation that may be the most clunky phrase imaginable, but sorting out any comparable term is beyond this chapter’s scope) provide ample testimony how their work often reduces their sense of who they are. But in the relationship at the bedside, the professional has a responsibility to offer care—and then to find other venues for her or his own care. The work of the humanities in illness seems to me to reflect this asymmetry: helping ill people to become good stories and helping professionals to help ill people, which can include telling their own stories but always to the end of participating in their patients’ stories.

The Humanities as Therapeutic

To open up the crucial issue of how stories help people who are suffering, let me follow William James’s argument presented in a lecture given in 1906 in which he described a general human problem in terms that evoke the demoralization of illness: “The human individual lives usually far within his limits; he possesses power of various sorts which he habitually fails to use. He energizes below the maximum, and he behaves below his optimum. In elementary faculty, in coordination, in power of inhibition and control, in every conceivable way, his life is contracted” (James 2010, 278; emphasis added). This is illness: the effect of contracting the life of the ill person, narrowing horizons of possibility, filtering and reducing the possibilities for joy, to use a word seldom spoken in institutional medicine (Brody 2009, 58–59). It may well be that illness only exacerbates what James maintains is a habitual condition of humans living with their energies “below the maximum,” but that further reduction is what is intolerably demoralizing about being sick.

The task, potential, and capacity of the humanities is therapeutic, insofar as the humanities seek to expand what illness has contracted. James called these dynamogenic effects, and he located three principal sources: “excitements, ideas, and efforts” (2010, 267–268). Excitements include being caught up in events that require extending one’s energies to meet the crisis of the moment; James’s examples are soldiers’ reports of discovering enhanced energies in battle. His examples of efforts include ascetic spiritual practices such as self-starvation and sleep deprivation. To illustrate, he quotes a long report by a man who undertook a rigorous program of yoga and reported feeling new and previously unimagined energy within himself. Ideas are exemplified by conversions, “whether they be political, scientific, philosophical, or religious,” and the energies that attend these (2010, 268).

James is eloquent in his enthusiasm for “dynamogenic” programs, but he is also realistic: “Of course there are limits: the trees don’t grow in the sky.” Illness is disease, and disease will take its toll; hospitals are institutions, and institutions impose their needs upon individuals, both patients and staff. Yet James refuses to allow these limits to have the last word: “But the plain fact remains that men the world over possess amounts of resource, which only very exceptional individuals push to their extremes” (James 2010, 268). Lest James’s historically conventional gender bias of language be distracting, I note that his prime example of such an exceptional individual is a woman whom he leaves anonymous but is likely to be his sister Alice:

The most genuinely saintly person I have ever known is a friend of mine now suffering from cancer of the breast. I do not assume to judge the wisdom or unwisdom of her disobedience to the doctors, and I cite her here solely as an example of what ideas can do. Her ideas have kept her a practically well woman for months after she should have given up and gone to bed. They have annulled all pain and weakness and given her a cheerful active life, unusually beneficent to others to whom she afforded help. (James 2010, 278)

Idealized as that portrait may be, it provides an illustration for what the humanities can offer as a therapeutic in response to the loss of what James calls energy, a diffuse term he uses to designate the capacity to live life to the fullest. C...