In the Belly of Illness
by Martin E. Marty
Martin E. Marty recently wroteModern American Religion (Vol. 2): The Noise of Conflict. This article appeared in The Christian Century, May 15-22, 1991, pps. 561-563. Copyright by The Christian Century Foundation; used by permission. Current articles and subscription information can be found at www.christiancentury.org. Article prepared for Religion Online by Ted & Winnie Brock.
BOOK REVIEW: At the Will of the Body: Reflections on Illness By Arthur Frank. Houghton Mifflin, 144 pp, $17.95.
At the end of a new book on the hermeneutics of testimony, Arthur Frank cites a "Far Side" cartoon:
A bearded man stands at the front door, dripping wet, in rags. The woman opening the door says, "For crying out loud, Jonah! Three days late, covered with slime, and smelling like a fish! ... And what story have I got to swallow this time?" Like Jonah, I have been spit back into life by the great fish of illness.
My reference to "the hermeneutics of testimony" is not intended as scholarly balance to the "Far Side." The purpose rather is to call up Paul Ricoeur’s reflection on why we pay attention when certain people speak and why we find what they say convincing: "The term testimony should be applied to words, works, actions, and to lives which attest to an intention, an inspiration, an idea at the heart of experience and history which nonetheless transcend experience and history."
Martyrs, near-martyrs, risk-takers and sufferers command our attention when they say they have seen the resurrected Lord, or led people on exodus or through exile, or been spit back into life by the great fish of illness. And they keep our attention and convict us when they voice our own deepest cries and suppressed sighs. Though called on professionally to study great numbers of books in this genre, I treasure Frank’s above others read recently. For those who are going through the experience of illness, those who have been spit back, survivors of those who have not, and, most of all, caregivers, this short work can transform lives or at least ways of thinking about living. A bore, it is said, is someone who, when you ask how she is, tells you. That may be the case with trivial diseases and illnesses, though one is not too sure even about that after reading Frank. Telling and listening are what his book is about.
A vigorous man, a medical sociologist in Calgary, Frank was felled around his 40th year by a heart attack and then cancer. Those who evade books like this because they would rather not encounter extensive clinical accounts have no excuse to avoid this one: Frank treats the medical realities with economy and taste. He does so in order to help us concentrate on his struggle to find meaning in it all.
One of the many lessons of this book of lessons is the distinction between "fighting" and "struggling." At the center of the book is Frank’s pondering of the story of Jacob in Genesis as imposed on his consciousness through a Chagall print which hung in the Franks’ living room:
Stories we tell ourselves about what is happening to us are dangerous because they are powerful. Stories come to us from many sources: some we seek, many happen without our notice, others impose themselves on our lives. We have to choose carefully which stories to live with, which to use to answer the question of what is happening to us. Jacob’s wrestling became a story I lived with as part of my personal mythology of illness. This is what it is to be ill: to wrestle through the long night, injured, and if you prevail until the sun rises, to receive a blessing. Through Jacob’s story, illness became an adventure.
Careful, here: Frank does not mean by "prevail" what many self-help authors do. He urges us to shun the language of "fighting" cancer, of "valiant battles" and "long bouts." The fight metaphor captures something of what living with illness is like. But Frank and his wife, Cathie (a presence throughout the book), learned to talk not about "waging a war against the enemy, cancer. Rather we were searching for words to describe lives that had been overrun." They were like civilians whose home had become a battlefield. Here came the story of Jacob.
Frank’s exegesis may not be fully orthodox, but it is appropriate in the hermeneutics of testimony. Jacob fought for his soul, which, from one angle in Frank’s mind, means Jacob’s self. The biblical figure had a checkered past, but now he is finally alone with "his good self and his dark twin" of his imagination. The dark twin is the trickster. "Jacob has to decide which side of him will prevail, the servant of God, or his dark twin, the trickster." The wrestling is a struggle but not a fight. "Jacob wins not by defeating his darker side, but by realizing that the other he is contesting shares the face of God. Jacob does not overcome his opponent: instead he finds divinity in him." There are two outcomes to the match: Jacob leaves with a wound; "the sun rose upon him, and he halted upon him, and he halted upon his thigh." And he gained a blessing. "Wounded, Jacob becomes whole. Whole, he is renamed."
For Frank this means illness is not a fight against an other, but it is a long struggle. "Some prevail by continuing to live; some prevail in dying." Being ill "is a perpetual balancing of faith and will," as the stories of Jacob and other Old Testament characters demonstrate in their attempts to serve what they call God’s will. Moses, Abraham, Noah "must accept what just seems to happen. This quality of acceptance is what I call faith."
"Just seems to happen." The phrase haunts what one might call the book’s theology. In a culture in which people try to find the roots of cancer in the cancer-prone personality, in something that the struggler must have done (or "left undone," as Frank quotes the church prayer), in the inability to summon enough will to conquer it, it is important to begin by saying: "As a bodily process, cancer ‘just happened’ to me.... Cancer of the type I had just happens." What happens next is crucial. "I" am not just a pawn in some random draw of bodies destined to become diseased; when cancer happened, Frank’s instance ceased to be random. "I am a bodily process, but I am also a consciousness, with a will and a history and capacity to focus my thoughts and energies," with a mind that "gives meaning to what happens in the body," that "thinks through the body it is a part of." Insist on it: "In the end what finally happens just happens," and that is where possibilities for faith and meaning and renewal—a better concept than "recovery," says Frank—can begin.
In a chapter on "Stigma" Frank notes that no one called his heart attack "h.a.," but many took refuge in cancer as "c.a." The patient responds by seeking to be invisible. "Every attempt to hide cancer, every euphemism, every concealment, reconfirms that the stigma is real and deserved."
Denial pervades medical language. To a nurse, Frank was "the seminoma in 53." Nurses and physicians give cues; they remind a patient that someone else is "much worse off." Terrible. "Comparisons deny the uniqueness of each individual’s experience. . . Ill persons deserve better." Every relative, friend, caregiver and sufferer should read Frank’s chapter on "Comforters and Accusers." Here as elsewhere Frank draws on the translations of the gifted poet Stephen Mitchell, whose reworking of the Book of Job influences the author, as does his translation of Tao Te Ching. Job’s wife when the illness is almost overwhelming: "Curse God and die." Job: "Shall we receive good at the hand of God, and shall we not receive evil?" Frank: "If Job talked that way today, and if his misfortunes included cancer, he would be told he had a typical cancer personality."
Frank has no use for the self-help offered by friends or authors who turn out to be "comforters and accusers." After Job dismissed the arguments of his accusers—as we should—God answers him. "Job learns that his misfortunes are nothing more than part of his humanity. Job’s final words, in Stephen Mitchell’s translation, are, ‘Therefore I will be quiet, comforted that I am dust."’ Frank adds:
Cancer is not God, but the person with cancer can find in Job’s story a kind of answer and comfort. Disease is part of the dust of our bodies; we accept it when we accept life. It is our humanity to contest disease as long as we can, but it is also our humanity to die.
In "Valuing Illness," Frank relates personal to societal suffering. "When society learns to value the ill, the other questions of rights . . . will fall into place with remarkable ease." Payments. Technologies. Treatments. He speaks in the context of Canadian health-care financing, which has it own limits, but he is aware of worse Alternatives "I can imagine nothing more cruel than being forced to make my own treatment decisions based on cost." And: "To understand what the rights of the ill mean, we must ask what is required to produce one’s self as a human being." His point is clear: "The ultimate value of illness is that it teaches us the value of being alive; this is why the ill are not just charity cases, but a presence to be valued." If we wish to learn about value and proportion, "we need to honor illness, and ultimately to honor death."
In the weeks this book has been with me I have thought most about the chapter on "Listening to the Ill." Usually caregivers and families only tell them things: "All you have to do is get well." Thus "people can’t give up the idea that the ill person is responsible for the disease." But for Frank the issue is not cancer patients’ need to talk openly; what matters is "society’s need to hear such talk," and to show a willingness to listen. This is most important with children, with the weak. "The responsibility of the ill, then, is not to get well but to express their illness well. And the two have nothing to do with each other."
Frank, informed by a Christian up-bringing—his religious searches lead him from Job to Tao—knows the language of prayer and the meaning of ceremony. He advocates "ceremonies of recovery," knowing that no one recovers from cancer; one only knows remission. He shows how ceremonies lead back to the everyday, the ordinary:
It is too easy to become distracted. When the ordinary becomes frustrating, I have to remember those times when the ordinary was forbidden to me. When I was ill, all I wanted was to get back into the ordinary flux of activity. Now that I am back in the ordinary, I have to retain a sense of wonder at being here.
Like Job, I have had my goods restored to me. Secure in the knowledge that I am dust, I enjoy what I have. . . . When I become ill again, and someday I will, I hope it will not be the total break in my life, the radical discontinuity, that I experienced before. Health and illness are not so different.... When I seek the meaning of my recovery, the opportunity of illness. I call it gravy.
Frank recognizes the inspiration of Arthur Kleinman, author of The Illness Narratives, who provides an epigraph for the book: "It is possible to talk with patients, even those who are most distressed, about the actual experience of illness.... Witnessing and helping to order that experience can be of therapeutic value." With never a heavy hand, Frank keeps the concept of "ordering" in view. Witnessing provides some coherence for the sufferer and those nearby.
I am glad that this slight-looking book has attracted notice, but disconcerted that some reviewers have seen it as an attack on the medical establishment and the care-giving professions. Like all patients, Frank has complaints, and being a specific patient, he has specific ones. Medical professionals consistently give signs that they have to manage, control, deal with "it"; patients need to be free, expressive, full of wonder, each of them a "thou." But Frank is more put off by his own establishment, the academic world. His university, its computers paying no attention to his seasons of suffering, spit out a report that "a lack of scholarly activity" was hurting his career.
Better to read this not as an attack on managers, controllers and professionals but as a guide to the listening that must go on if healing is to occur. "When a person becomes a patient and learns to talk disease talk, her body is spoken of as place that is elsewhere, a ‘site’ where the disease is happening." But "illness is the experience of living through the disease...Illness begins where medicine leaves off, where I recognize that what is happening to my body is not some set of measures. What happens to my body happens to my life...to me. Not it, but me."
Then comes pain, and talking of pain. "But taking pain entirely into my own body, making it too much my own, carries the danger of becoming isolated in that body. Isolation is the beginning of incoherence." Incoherence is the enemy. And there is the loss "of future and past, of place and innocence," losses partly compensated for by one thing the ill learn most about: friendship.
At home there were cards and calls from friends and family. I heard from people I had not seen in years and was surprised they even knew I had cancer. These messages in particular gave me what I think ill persons need most, a sense that many others, more than you can think of, care deeply that you live.
When congregations of believers are effective, when they make room for testimony, talking and listening, when they act upon their charters with cards and casseroles and intercessory prayers with real names in them, they come close to displaying their central purposes. Whether the caregivers be pastors, nurses, doctors, chaplains or families, they will take much from Frank’s writing.
I reserve the name "caregivers" for the people who are willing to listen to ill persons and to respond to their individual experiences. Caring has nothing to do with categories; it shows the person that her life is valued because it recognizes what makes her experience particular...Care is inseparable from understanding, and like understanding, it must be symmetrical. Listening to another, we hear ourselves. Caring for another, we either care for ourselves as well, or we end in burnout and frustration.
Frank ends on a note of wonder. After Job, after Jacob, he returns to the hermeneutics of testimony posed by the "Far Side" and Jonah:
How strange and wonderful the world must have looked to Jonah, come out of the belly of that great fish. Could he preserve the poignancy of that first moment, after three days in the slime and the stink, when he saw the light and land and water, and knew the face of God?
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