What story, then, does pain tell?
INSPIRATION
The pain specialist was half dreading his first consultation in the hospital that morning. So grim. The patient was a middle-aged train conductor who suffered from multiple sclerosis. He had fallen from a train one day (MS affects balance) and sustained such severe injuries that his legs and one arm had to be amputated. He was now suffering from the onset of phantom limb pain.
“And he still had MS?” I said without thinking when the doctor later told me the story, as if the universe—having stolen three of the patient’s limbs—would at least recoat the myelin on his aberrant nerve cells.
The doctor recalled how when he walked into the room, the patient was lying in bed reading. “Hey, Doc—have you read this book?” he said, showing him Rachel Naomi Remen’s Kitchen Table Wisdom, a book of medical stories. “Some of these people—the things they’ve been through, the way they cope—it’s incredible.”
The doctor did a double take. The patient—holding the book with his sole remaining limb—was being inspired by the characters, most of whose medical adversities were less grave than his own. The patient had no idea that his capacity for inspiration would inspire the doctor, such that years later the doctor would tell the story to me and I, too, would feel a quickening (although I had read Kitchen Table Wisdom myself and felt only alienated by its stories of ennobling illnesses).
“I always think about that,” the doctor told me. “Why? Why do some people do so well with intractable pain problems while others fall apart with ordinary ones? I’ve had patients with nonspecific lower-back pain give up—go on disability, become depressed, turn into full-time chronic pain patients—while others with more serious conditions are resilient.”
“These lectures—” He made a dismissive motion with his hand about the lecture he and I had just attended about a gene that may or may not play a role in a type of pain.
Is the mystery of resilience a matter of genetics, character, temperament, will, luck? he mused. How can a physician (not a priest, not a magician) help patients who are broken by pain metamorphose into the train conductor whose empathy for the suffering of others is so great he momentarily forgets about his own?
“If we knew the answer to that,” he said, “we would truly know how to heal.”
SUFFERING
Nociception
Pain
Disability
Suffering
Pain Behavior
If pain worked the way it should, these things would reliably follow one another: nociception (the impulses transmitted by nerve cells that detect tissue damage) would cause pain. Pain would cause disability. Disability would cause suffering. Suffering would predictably cause certain pain behavior, so that you could accurately assess how much a person is suffering from the person’s words and actions.
Yet none of this is true. Nociception can cause pain—or not. Certainly, the quality of pain bears no clear relation to the nociceptive input. Pain can cause disability—or not. But the most mystifying relation is that of pain to suffering: there are those who appear to suffer greatly over modest pain and those who appear to suffer far less from great pain. Pain behavior cannot be assumed to provide an accurate guide to the internal experience of suffering. The train conductor, balancing the book of inspirational stories in his one hand, provides a dramatic illustration that extraordinary nociception, pain, and disability do not necessarily occasion extraordinary suffering or pain behavior that demonstrates such suffering.
Sufferers experience their suffering as stemming from something outside them, Dr. Eric J. Cassell writes in The Nature of Suffering and the Goals of Medicine. Yet “the factors that convert even severe pain into suffering depend on the particular nature of the individual . . . [T]he pain is the pain that it is and the suffering takes the form it does in part because of the contribution of meanings of the patient. Same disease, different patient—different illness, pain and suffering.”
I had seen this myself in patient after patient. The assignment I had to write about chronic pain should have taken a month or two, if I dallied. I wasn’t being asked to write a dissertation. Yet seven months later I was still visiting pain clinics around the country, following the director of each clinic and observing each one’s interactions with patients. Eventually I observed several hundred patients.
After my article was published, in 2001, I decided to write a book because I wanted to answer one crucial thing: Why do some people get better? How did the outcomes match the doctors’ original predictions? Was there a recipe for healing, and if so, could I employ it for myself? Why was a West Virginia logger I met, who can no longer work owing to a back injury, suicidal? Yet Holly Wilson—paralyzed from a spinal cord injury—did not seem even mildly depressed. Holly had been paralyzed in a cruelly ironic way: a surgeon accidentally damaged her spinal cord during a minor surgery to remove a bulging disk in her neck.
“I had this neck pain that radiated into my arm,” she explained of her original condition. “I thought it was the worst thing! I complained about it constantly—I couldn’t wait to have the surgery. I had no clue what intractable pain was like.” Now she suffers from the intractable pain, common with spinal cord injuries, that she experiences as coming from her paralyzed body, which she calls her “shadow.” She is loathe to take opioids in the doses required to control her pain. “I like to be clear-headed. Clear-headedness is more important to me than lack of pain.” She tried a spinal cord stimulator, but it made her pain worse. She told me the case settled out of court for a sum that is insufficient to cover a lifetime of medical expenses, and now—ten years later—she fears running out of money.
I kept her hour after hour, interviewing her—watching her face, the way she laughs, the way she holds her head. But behind all my questions I had only one question: Why haven’t you despaired? She has pain; she has disability; she describes her pain and disability vividly. Why don’t they seem to cause her greater suffering?
One part of the answer lies in her relationship with her husband. “He’s always there for me,” she said. “I’m sure—I’m 99 percent sure—he’s never going to leave me.” Another part of the answer seems to lie in her relationship with her doctor, Scott Fishman. Although he had not yet been able to adequately control her pain, he was always trying—he always had a plan, six months ahead, of treatments to try. Whenever he heard about experimental treatments, he would find out whether they were suitable for her. “I’ll call anyone in the world about Holly,” he told me. Dr. Fishman’s care for her—and her belief that he was always thinking of her—helped to balm the psychic scar of the fact that the surgeon never personally apologized to her for it or came to visit her in the hospital after the surgery. But Lee Burke had a good relationship with the Nice Doctor—indeed, his empathy blinded her to the failure of his treatment.
“I don’t really know,” said Holly when I asked her directly how she combats despair. “I’m not going to say that I’ve never thought of ending my life because I have and it would be easier for me, but I would never do that to my family. I know I could never do that to my family because my father did.”
INTEGRATIVE AND DISINTEGRATIVE PAIN
“Pain upsets and destroys the nature of the person who feels it.” Aristotle’s epithet seems all too true: pain fills consciousness, blotting out the components of which the self is made. Yet such is pain’s peculiar relationship to meaning that this loss can take startlingly different—indeed, opposite—meanings.
Suffering is sometimes described as a state that poses a threat to identity. While some pain poses a grave threat, other pain paradoxically strengthens the sense of self. Chosen pain—the pain of childbirth, a tattoo, an athletic feat, an act of bravery on the battlefield—can be integrative, strengthening integrity. For religious devotees and participants in the mourning and coming-of-age rituals common to most cultures, pain’s dislocation of self is valued as a means of reshaping that self according to the religious
ideals of the community. In a secular context, hazing rituals use pain to create “brothers” rather than discord. The pain of S and M fulfills deep erotic desires. The pain of self-mutilation may accomplish relief from a greater psychic pain or a sense of emptiness or numbness.
Chosen integrative pain differs profoundly from unchosen disintegrative pain: pain that cannot be reconciled with one’s sense of self, but undermines and destroys it, as the pain of surgery differs from the pain of disease, even when they result in the same tissue damage. The pain of surgery can be integrative because it furthers the goal of survival, whereas the pain of the progression of a disease brings us closer to the self’s dissolution. The pain of childbirth differs from the pain of miscarriage. Some women today elect to forgo anesthesia in childbirth and say that they are glad that they did.
“One word frees us of all the weight and pain of life: That word is love,” Sophocles wrote in the fifth century B.C.E. Sean Mackey, chief of the Pain Management Division at Stanford University and the director of Stanford’s Neuroscience and Pain Lab, recently showed that the pain of which Sophocles spoke can include physical pain. Dr. Mackey was struck by the parallels between the experience of early romantic love and the experience of addiction. Early romantic love involves overwhelming cravings for and emotional dependency on the beloved, obsessive thinking, a sense of energy, euphoria, and intensely focused attention, and piercing pangs of withdrawal. He wondered if both addiction to opioid painkillers and romantic love activate similar opioid brain systems. If so, does romantic love confer analgesia?
He and his colleagues recruited Stanford students who identified themselves as being in the first nine months of passionate romantic relationships. The students were asked to bring photographs of their beloved as well as of an equally attractive acquaintance. The students were then given a painfully hot stimulus while their brains were scanned and they were told to focus on a photograph of their lover or a photograph of their acquaintance. Love ameliorated the pain. When students were given a moderate-intensity pain stimulus, looking at a lover’s picture caused a 46 percent greater reduction in pain, as compared with looking at an acquaintance.
When competing with a high-intensity pain stimulus, however, love’s powers began to wane, reducing the students’ pain by only 13 percent. But the more passionately in love the students were, the more analgesic benefit they received. Students who said they spent more than half of the day thinking about their partners experienced more than three times the analgesic benefit than that of those who were less preoccupied with their partners. The imaging revealed that the photographs of their lovers activated brain regions involved with opioids as well as those involved with dopamine. (The dopamine regions are also activated in people with addictions.)
The study seems to raise the intriguing question of whether the effects of love could be nullified by giving the subject a drug that blocks opioids, such as the drug naloxone. Could naloxone be the romantic antidote that would close the wound of Cupid’s arrow—a condition whose pangs have tormented unrequited lovers from the beginning of time?
It is not only love, but community that balms pain. Researchers at Oxford University recently discovered that rowers who trained together were able to tolerate twice as much pain as rowers who trained alone. The rowers did a training session alone and a training session as a team; after each session their pain threshold was measured by seeing how long they could bear a blood pressure cuff squeezing on their arm. The men’s pain threshold generally increased after exercise, but it increased far more significantly after group training sessions than after single sessions, suggesting that for humans, it is not only running from a tiger that produces the flood of endorphins of descending analgesia, but also communal activities (a phenomenon that may shed light on the embrace of pain during religious rites).
In his book Disease, Pain and Sacrifice, the psychologist David Bakan refers to integrative pain as telic centralizing: pain that is interpreted as consistent with one’s telos or sense of purpose. Sacred pain is telic centralizing; secular pain is telic decentralizing. Torture maims the victim’s sense of self; thus “whoever was tortured, stays tortured” after wounds have healed, as Jean Améry wrote about his torture by the Nazis. The Nazis arrested and tortured him, hanging him by his arms, and then sent him to Auschwitz. He survived torture, but not the memory of it, and eventually he committed suicide.
Torture involves the deliberate creation of suffering, which may or may not involve physical pain. “Waterboarding”—favored by the Spanish Inquisition, the Khmer Rouge, and the Bush administration—simulates drowning in such a way that it creates the overreaching desperation to make the torture stop, which is torture’s hallmark. Confusion about the distinctions among tissue damage, pain, and suffering underlay the Justice Department’s argument that “the waterboard, which inflicts no pain or actual harm whatsoever, does not, in our view inflict ‘severe pain or suffering.’ ”
Rape is torture, even though it does not necessarily cause significant or enduring tissue damage. The torture of starvation only intermittently causes hunger pains. The torture of prolonged sleep deprivation or sensory deprivation (used by the British on IRA prisoners until the technique was outlawed) does not cause any tissue damage, but it can produce psychosis and long-term psychological damage. The forced lobotomies in the Soviet Union and America in the first half of the twentieth century involved little pain. And, of course, psychological tortures—such as the torture of knowing one’s loved ones are being tortured—require no physical pain at all.
Context stamps pain like a coin. Torture in one context may be part of an occasion for rejoicing in another. I heard a lecture on pain and suffering once in which the speaker showed a photograph of a Hindu devotee during the festival of Thaipusam with hooks in the flesh of his back connected to ropes that followers were tugging on, like the reins of a horse (a festival I would later witness). “You see, the man’s face is in repose,” the lecturer commented. “The piercing does not cause him suffering, because it strengthens, not weakens, his sense of himself and his bond with his community.” If the devotee is in pain, that pain is telic centralizing.
But for a Western person (like me) for whom pleasure and well-being are central, is physical pain inevitably disintegrative and telic decentralizing? Does faith play any role in shaping the experience of pain today?
THE RISKS OF RELIGIOUS BELIEF
In recent years, a number of studies have attempted to quantify the effects of religious belief on pain, health, disability, depression, and mortality in the context of chronic disease, with surprising results. A 2005 study led by Dr. M. Ojinga Harrison at Duke University Medical Center examined the role religion plays in modulating pain in African American patients with sickle-cell disease.
As a group, African Americans are strikingly religious: historically, the church has played a central role in helping its members cope with their plight, and a high proportion of African Americans continue to attend church and describe their faith as central to their lives. Sickle-cell disease has no cure. Despite recent advances, the lives of those afflicted by it are punctuated by disabling episodes of severe pain, lasting from a few hours to several days, which often require hospitalization and intravenous pain medications. But studies of sickle-cell disease have found that the frequency of pain crises is associated not with the severity of the disease but with the emotional state of the patient—with depression, anxiety, and other negative emotions correlated with greater pain. Those who attended church once or more per week were found to have both lower levels of psychiatric disturbance and the lowest scores on pain measures.
Larger studies have found that—for unclear reasons—people who attend religious services live longer and are generally healthier, less depressed, and less likely to be disabled. A famous nine-year analysis of more than twenty thousand adults in the United States, led by Robert A. Hummer at the University of Texas at Austin, found an astonishingly strong statistical correlation be
tween churchgoing and mortality: Christians who attended church once a week lived an average of six years longer than nonattendees, while those who attended more than once a week lived an average of seven years longer. Even the timing of death seems to be influenced by religion: the devout are less likely to die before important religious holidays. African American Christians who attended church once a week lived eight years longer, while those who attended more than once a week lived fourteen years longer!
What about the devout who do not attend church? Curiously, “private religiosity” (prayer, Bible study, or self-described “intrinsic religiosity”) does not appear to yield any of the dramatic benefits of church attendance. Indeed, private religiosity turns out to be associated with both negative and positive health outcomes and both worsens and ameliorates pain and depression.
It appears that the concept of private religiosity is too broad and that, from a health perspective, there are helpful and harmful forms of faith. Some of the benefits of churchgoing are thought to stem from cognitive reframing—the ability to reinterpret pain and illness as potentially furthering spiritual health even while they threaten physical health. But while some people believe that illness draws them closer to God, others may interpret it as God’s punishment or abandonment, or they may begin to question God’s very existence.
The Pain Chronicles Page 20
