The Pain Chronicles

by Melanie Thernstrom

  While this view has helped us make strides in managing acute pain and spurred on the development of anesthesia, it has impeded and continues to impede our ability to recognize and understand chronic pain. It cannot explain why some pain continues to worsen of its own accord. Even for acute pain, the model does not suffice, for it cannot explain why in a lab experiment the same heat stimulus may hurt one person more than another, or why injuries that are severe may hurt someone only mildly while mild injuries may be agonizing for others. Moreover, the model cannot explain treatments that target only the mind, such as the forgotten nineteenth-century technique of mesmerism (a form of hypnotism), so effective that it enabled surgery to be performed painlessly.

  The biological view of pain is in conflict not only with the way man through the ages has regarded pain, but with the way in which pain is experienced, not as an ordinary physical function, but as an extraordinary state of being. Unlike the premodern paradigm, the biological model cannot explain the disconcerting flexibility of meaning in pain, or why the meaning of the pain changes the pain itself. Why does the pain of loss of virginity seem to differ so profoundly from the pain of rape, or the pain of sadomasochism differ from the pain of sexual abuse? How can the pilgrims I witnessed in the Hindu celebration at Thaipusam in Kuala Lumpur claim that not only are they not in pain, but they feel joy while fishhooks decorate their backs and skewers pierce their mouths?

  In recent years, a new, third paradigm of pain has emerged, a synthesis that embodies elements of both earlier traditions. The contemporary model of pain sees it as a complex interaction among parts of the brain. While founded on the same scientific traditions that gave rise to the nineteenth-century view, it has also revealed the truth embedded in the nonscientific, premodern model by showing the way in which pain is inherently meaningful because it is not simply a matter of nerves firing, but an experience created by meaning-making parts of the brain.

  Like the consumptives stranded in the half century after science had discovered the nature of their disease but had not yet yielded a cure, those who suffer from persistent pain in our era are caught in an uneasy moment. Pain is one of the most promising fields of medical research today: new tools in the form of advanced imaging techniques are taking the first pictures of the brain in pain, and techniques of gene analysis are identifying which genes are active in the presence of pain. Yet the pain clinic lags far behind the research lab. Patients languish because of lack of access to good treatment and because even the best treatment that exists today is often inadequate.

  When we read about the conceptions of pain throughout history—of the ancient Babylonian tablets, for example, that situate the origin of toothache in the making of the world—we are thankful to live in the modern world with modern medicine. What would it be like to have toothache figure so prominently in consciousness that its origin merited inclusion in the story of all creation? When we read of their remedies—a word spell said over a plant poultice—we feel sorry for the Babylonians.

  But when others look back on our treatments, they will feel sorry for us—both for the limitations of our knowledge and for our reluctance to use the knowledge we have. They will shiver at the thought that people lived with chronic pain—as we do now when we read the accounts of surgery without anesthesia, an idea so dreadful as to be almost unimaginable. Just as we are amazed that anesthesia could have been controversial, they will be surprised at the way some of the most powerful pain medications we have—opiate and opioid medications such as Percocet and OxyContin—are misunderstood and misused, withheld from those who would benefit from them and given to those who are harmed by them.

  Pain takes sufferers’ own worlds away and leaves them on a magic mountain of isolation and despair. To understand that chronic pain is a disease is the first step off the mountain of lonely meanings.

  Curiously, the progression of my understanding of my own pain mirrored the larger progression of the understanding of pain in history. In 2001, I was given an assignment by The New York Times Magazine to write an article about chronic pain. Although I had suffered from pain myself for a number of years, it wasn’t until I began researching my article that I gained any real understanding of my condition, what pain is, and what the treatment options are. I had seen a variety of doctors, both good and bad, but I had difficulty distinguishing between the two, changed doctors frequently, and complied erratically with treatment plans. Coming to understand pain as a disease changed my relationship to it, from seeing it as a personal affliction, failure, or curse to seeing it as a manageable medical problem.

  For many years, I kept a record of my quest toward healing: a pain diary that documented the meanings I made of pain as it wreathed my personal and romantic life like a choking vine. The metaphors that obscured my medical situation were of my own making. Although my rheumatologist had suggested keeping the diary as a helpful tool, the diary itself became a place for embroidering my pain with pernicious meanings. When, as a journalist, I had the opportunity to read other patients’ pain diaries, I was struck by how many others did the same.

  While researching my article, I was able to interview the most distinguished pain specialists—researchers and physicians—throughout the country, and I spent time in seven of the best pain clinics, which served such diverse populations as coal miners in West Virginia, cancer patients in New York, and pediatric patients in Boston. I followed the director of each clinic on his or her daily rounds and appointments, studying patient charts and sitting in on difficult case conferences for periods of time ranging from a day to a month. I saw the questions they confront: How do you measure a patient’s pain? What if he or she is fabricating it? How do you choose a treatment plan? How do you know which patients will abuse drugs? Are some people genetically more prone to developing chronic pain? What is the relationship between pain and depression? Why are there so many female patients? Most of all, I was struck by the contrast between the physician’s and the patient’s points of view: the difference between patients’ understanding of their suffering and doctors’ understanding, and the complex nature of the medical encounter.

  The Victorians believed in an invisible hierarchy of feeling in which the young were more pain sensitive than the old, females were more sensitive than males, and rich, educated whites (the inventors of the theory) naturally found themselves to be infinitely more pain sensitive than the poor, the unschooled, the enslaved, and indigenous peoples. Surprisingly, modern research has found that physiological pain sensitivity is affected by race, gender, and age—but not at all in the way the Victorians believed.

  I eventually observed several hundred patients. At times, visiting pain clinics felt like descending into Dante’s Inferno. Some were crushed in industrial accidents or suffering from degenerative nerve and autoimmune diseases, while others had ordinary complaints such as backaches or headaches that were causing them extraordinary pain. I kept in touch with patients over the course of eight years to try to answer the question: Why did some people get better and not others? Does the answer lie in the nature of the patients or in the doctors or in the treatment methods used? How does religious faith affect pain, disability, and mortality? Does churchgoing or prayer ameliorate pain?

  I met a young woman who acquired chronic back pain from a five-minute demonstration of a chiropractic maneuver which she’d been talked into by a trainer at the gym one day. Over the course of the next eight years, she supplemented her insurance with six figures of her own money, seeing every well-known doctor and trying every type of treatment she had heard of before she found one that worked. Eight years! But she got better.

  Pain, like any extreme situation, brings out the best or the worst in people. Pain makes a hero of some: a woman paralyzed by a routine pain surgery for a bulging disk in her neck who coped with her new, much more terrible affliction of spinal cord injury pain. A train conductor who lost three of his limbs when he fell off a train and suffered from phantom limb pain taught his doctor about the mystery
of resilience. Yet other patients were suicidal, and others (including myself) found that we were acting in ways unrecognizable to ourselves and collaborating in our pain rather than combating it.

  This book is divided into five sections: “Pain as Metaphor,” in which pain is seen through the lens of the meanings that have been made of it from ancient times onward; “Pain as History,” which traces the discovery of anesthesia in the mid-nineteenth century and the collapse of the religious model of pain; “Pain as Disease,” which discusses the state of pain treatment and pain research today; “Pain as Narrative,” which follows the experience of patients undergoing pain treatment and the way in which pain changes and is changed by life as it is lived; and finally, “Pain as Perception,” which unites the varying paradoxical aspects of pain through the contemporary understanding of how pain works in the brain. Woven throughout is my own story, based on the pain diary that I kept.

  Every one of us will know pain in our lives, and none of us knows when it will come or how long it will stay. Although we will one day have effective treatment for the disease of chronic pain, we can never eradicate pain itself, because our bodies require it. Pain is a defining aspect of mortal life, a hallmark of what it means to be human. It often stamps both the beginning and the end of life. It threatens our deepest sense of ourselves and—portending death—reminds us of the ultimate disappearance of that self. It is the most vivid experience we can never quite describe, returning us to the wordless misery of infancy. It seems to rend a hole in ordinary reality; it is intrinsic to the human body, yet feels alien. And it is the aspect of mortality that we like least; we abhor pain more, even, than death.

  Pain is like a poison from whose cup everyone has sipped; there is no one who cannot recall its taste and fear a deeper draught. Take this cup from us, we say, while knowing no reprieve is permanent.

  This is a book about the nature of that poison—its peculiar taste, its mysterious effects—and its antidotes.

  I

  THE VALE OF PAIN, THE VEIL OF PAIN:

  Pain as Metaphor

  DOLOR DICTAT

  Mortals have not yet come into ownership of their own nature. Death withdraws into the enigmatic. The mystery of pain remains veiled,” the German philosopher Martin Heidegger writes. Does metaphor unveil pain to reveal its true nature, or is metaphor the veil that surrounds pain—and makes it so hard for us to see pain as it is?

  Pain is necessarily veiled, David B. Morris writes in The Culture of Pain, because, to a physician, pain is a puzzle, but to a patient it is a mystery, in the ancient sense of the word—a truth necessarily closed off from full understanding, which refuses to yield every quantum of its darkness: “a landscape where nothing looks entirely familiar and where even the familiar takes on an uncanny strangeness.”

  But “illness is not a metaphor,” Susan Sontag sharply asserts in Illness as Metaphor. “The most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, and resistant to, metaphoric thinking. Yet,” she complains, “it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.”

  How true this sounds! I read it again and again to feel its full weight—how helpful and clarifying it is. Sontag’s point seems to turn on what one might think of as the different resonances of the words illness and disease. While disease refers to biological pathology, illness opens the door to a world of wider meanings—the very meanings, Sontag says, that burden and confuse the patient. When the pathology of the illness is finally understood, metaphors will fade away, she asserts, in the way that consumption became TB. Cancer is not an expression of repression, it is a cluster of abnormally dividing and enduring cells; AIDS is not retribution for homosexuality, it is an immune deficiency. Pain is not a pen dipped in blood, scribbling on the body in illegible script, nor is it a mystery to be divined; it is a biological process, the product of a healthy nervous system in the case of acute pain and a diseased one in that of chronic pain.

  True, true. Yet even when pain is understood this way, its metaphors endure. When pain persists, a biological disease becomes a personal illness. The illness changes the person, and the changed person reinterprets the illness in the context of her life, experience, personality, and temperament. A thousand associations spring to mind—personal, situational, cultural, and historical.

  As soon as we reject certain metaphors, others immediately take their place. Foucault’s modern doctor may ask, “Where does it hurt?” but the patient will ceaselessly—idly and intently, consciously and unconsciously—contemplate the old question, “What is the matter with me?” and this wrongness cannot be illuminated by the word pain.

  More, perhaps, than any other illness, protracted pain spawns metaphor. As has often been observed, pain never simply “hurts.” It insults, puzzles, disturbs, dislocates, devastates. It demands interpretation yet makes nonsense of the answers. Persistent pain has the opaque cruelty of a torturer who seems to taunt us toward imagining there is an answer that would stop the next blow. But whatever we come up with does not suffice. We are left like Job, bowing before the whirlwind.

  On one hand, nothing is more purely corporeal than physical pain. It is pure sensation. Indeed, it often figures in literature as a symbol of illegibility and emptiness. As Elaine Scarry writes in The Body in Pain, pain is uniquely lacking in a so-called objective correlative—an object in the external world to match with and link to our internal state. We tend to “have feelings for somebody or something, that love is love of x, fear is fear of y . . . ,” she explains, but “physical pain—unlike any other state of consciousness—has no referential content. It is not of or for anything.”

  As Emily Dickinson puts it, “Pain has an element of blank.” Yet it is the very blankness of pain—the lack of anything it is truly like or about—that cries out for metaphor, the way a blank chalkboard invites scribbling. As soon as Dickinson tries to describe this great blank, she grasps for metaphor:

  Pain—has an Element of Blank—

  It cannot recollect

  When it begun—or if there were

  A day when it was not—

  It has no Future—but itself—

  Its Infinite contain

  Its Past—enlightened to perceive

  New Periods—of Pain.

  You try to wake yourself out of pain—it’s not an infinite realm, it’s a neurological disease—but you can’t. You are in a dreamscape that is familiar yet horribly altered, one in which you are yourself—but not. You want to return to your real self—life and body—but the dream goes on and on. You tell yourself it’s only a nightmare—a product of not-yet-fully-understood brain chemistry. But to be in pain is to be unable to awaken: the veil of pain through which you cannot see, the vale of pain in which you have lost your way.

  To be in pain is to be alone, to imagine that no one else can imagine the world you inhabit. Yet the world of pain is one that all humans must, at times, inhabit, and their representations of it pierce us through the ages. “Head pain has surged up upon me from the breast of hell,” laments a Babylonian in a story three millennia old. The agony of the ancient sculpture of the Trojan priest Laocoön and his sons as they are strangled by sea serpents still contorts the ancient marble, as does the very different agony of Jesus’ crucifixion in Matthias Grünewald’s Renaissance altarpiece.

  Dolor dictat, the Romans said—pain dictates, dominates, commands. Pain erases and effaces. We try to write our way out of its dominion. How savage its practices, how dark its vales! we exclaim, this unhappy country on whose shores we have washed up after a voyage upon which we never sought to embark.

  “I would have made a fine explorer in Central Africa,” the nineteenth-century French novelist Alphonse Daudet writes in his slim volume of notes about suffering from the pain of syphilis, published as In the Land of Pain after his death. “I’ve got the sunken ribs, the eternally tightened belt, the rif
ts of pain, and I’ve lost forever the taste for food,” he laments.

  If only Daudet were in Africa, instead of in Pain, he would know that one day he could return home and leave his tribulations behind. His scribblings might then seem to be tall tales: Was he really pricked with a thousand arrow points while his feet were held in fire? But if others were skeptical, he wouldn’t mind. He’d no longer need anyone to walk in that lonely place with him. Indeed, he would hardly recall it himself.

  But Pain is not a place easily left behind. We inhabit Pain. Pain inhabits us.

  Dolor dictat.

  We write about pain, but pain rewrites us.

  Pain Diary:

  I Keep a Secret

  ONSET: When did your pain begin? Was there any triggering event or special circumstances that surrounded it?

  In the beginning, it was secret.

  It began when I was visiting my best friend, Cynthia, and her friend Kurt in Nantucket. Kurt had been Cynthia’s boyfriend for many years, but that had been many years before. By the time of my visit, they had been friends longer than they had ever been lovers, and everything was easy. Their relationship was the kind of thing people say never works, but it did, so that was part of the fun, too.

  Kurt lay on his back in the sun, reading Foucault, while Cynthia swam the perimeter of the pond. She was wearing a cardinal-colored bathing suit, her dark curls tucked under a cap. They were both academics, a decade or so older than I. Even though I was twenty-nine, I felt a bit like a child around them—bright, but slightly ignorant. Cynthia had adopted me when she was a seventh-year English Ph.D. student and I was a first-year creative writing one, and it had been my dearest hope that she’d become my friend. Kurt never would have paid attention to me, I knew, but for Cynthia. Her gaze always put me in the best light—a prettier, cleverer light.