The Pain Chronicles (23 page)

THE FEARED-FOR SELF, THE ACTUAL SELF, AND THE HOPED-FOR SELF

Currents of hidden feeling complicate doctor-patient relations in every field of medicine, but the one between a pain doctor and his or her patient is especially fraught. Observing patients’ appointments in a dozen pain clinics around the country, I was struck by the intense intimacy of the rendezvous, as the patient (usually female) waited half undressed, with her enormous hopes, offering her pained body to the stranger (usually male) who, like a savior, is vested with the power to ease suffering—or to fail.

The pain doctors I observed were excellent. I had selected them because I wanted to see how effective pain treatment could be; I had plenty of information from patient histories as to how it could fail. In the several hundred appointments I observed over the years, I never witnessed a doctor stumped by a case. Not only had the patients not tried everything—even the ones who had seen dozens of doctors—but frequently they hadn’t tried the most obvious treatments. The doctor concluded the appointment satisfied. There were protocols to try, reasons for hope. When the doctor left the room, I stayed behind to talk and was startled at how often the patient’s perspective was different.

There were two particular questions I always asked. The first was, “What do you think your diagnosis is?” The second was, “Do you think your doctor wants you to get well?” More often than not, these questions revealed that the appointment had—in a fundamental sense—failed. The patient did not understand the diagnosis. The patient did not believe the diagnosis. The patient was not certain that the doctor cared whether she or he got better—and on that lack of certainty, everything somehow foundered.

I’d have to resist the impulse to hurry down the hall after the doctor and drag him back. During each appointment, I had heard the doctor explain the diagnosis, explain the treatment plan, and then ask—as is customary—whether the patient had any questions. But the intense emotions that pain evokes interfere with patients’ abilities to absorb biomechanical explanations—or even to be interested in them. (Prior to being given an assignment to write about pain, I had never informed myself even at the level of looking up my symptoms on the Internet, because at every minute I was busy trying—and failing—not to think about pain.)

Patients have only one question in their minds, sometimes voiced, sometimes not.

“Do you think I’ll get well?” Elena asked the pain doctor. Elena had developed complex regional pain syndrome (also known as reflex sympathetic dystrophy syndrome), an enigmatic dysfunction of the autonomic nervous system that afflicts a limb like a fairy-tale curse, causing it to slowly wither.

The syndrome usually begins in one limb with an injury of some kind, yet the injury can be as significant as surgery or as small as an injection. For unknown reasons (perhaps owing to a genetic vulnerability), the autonomic nervous system that controls temperature, blood flow, hair growth, and sweating goes crazy. The afflicted suffer from burning and shooting pains; the limb becomes swollen and discolored, purple or rose, and the skin becomes too painful to touch. Hair grows rapidly or stops growing; sweating increases or ceases; the nails become disfigured, cracked, and brittle; the skin becomes dry or eerily shiny; the joints stiffen; the muscles go into spasm. In its most severe form, the changes become irreversible as the bones soften and thin, the muscles atrophy, and the limb becomes fixed in a furled position, as useless as a relic. The disease sometimes claims the opposite limb as well, or spreads to other parts of the body. Its course is unpredictable. Occasionally the progression can be halted by early treatment, although it sometimes disappears with no treatment at all, and sometimes all treatment fails.

The doctor was one who prided himself on his honesty, in contrast to what he thought of as the showmanship and empty promises of sham medicine. He had told me how enraged he was when he saw advertisements for products or services that professed to “cure” the syndrome, because they were all either useless or dangerous. Elena asked about the most dangerous of all, one that could cure or kill: a medically induced coma. Patients are given doses of the drug ketamine, an anesthetic and hallucinogen (whose street name is Special K), so massive that they lapse into a coma for five days, where they are often tormented by hallucinations. The treatment has not been approved in the United States, but patients go to Germany or Mexico for it.

Ketamine blocks pain receptors; massive doses of the drug shut down the nervous system, and for unknown reasons, when it restarts, it sometimes functions normally again—a process analogized to rebooting a computer. But sometimes people wake and find that while their pain is gone, they no longer know how to walk and talk. In 2008 a New Jersey woman went to Germany to undergo the treatment and emerged paralyzed from the neck down. Her husband told a reporter that her pain had been so terrible that if they had to do the treatment again, they probably would.

In one sentence, the doctor dismissed the idea, saying it was dangerous. “We’ll try to get you sorted out,” he told Elena quietly.

She looked at him agog. She was a middle-aged mother of five with no previous health problems, and the syndrome had begun nine months ago when one of her daughters had slammed a door on her hand. But instead of healing, the injury had metamorphosed, so that she was unable to continue work as an administrative assistant. She needed her hand back.
He would try to get her sorted out?
She held it up for emphasis; it looked swollen and mottled, like a dying guinea pig.

“Do you
think
it will?” she asked, the anxiety level in her voice rising.

It was clear to me that the question was not a medical, but a personal one. She didn’t want an analysis of the odds; she wanted the doctor to show that he had a personal investment in her and was willing to verbally bet on her, as it were. She wanted to know that he saw the disease that was stealing her hand as
wrong
, that he could picture her the way she used to be, and that he believed she could be that way again. In asking about the ketamine coma, she had been conveying that the disease was killing her old self and that she was willing to risk dying in order to regain it.

Pain, it has been said, fragments the sufferer’s sense of self, creating a feared-for self, an actual self, and a hoped-for self, each of which the doctor must address. Having spent a few weeks following this doctor, I knew he was personally invested in all his patients’ treatment. But in addition to a penchant for clinical speech, he has a shy manner. His warmth seemed to disappear beneath his beard as he told her, “We don’t know who will respond to the treatment and why. The only critical factor that we’ve identified so far in limiting the disease is keeping the limb mobilized.” He went on to talk about nerve blocks (injections of local anesthesia that temporarily block pain). The blocks do not directly treat the condition, he said, but the temporary suspension of pain they create allows the patient to be able to endure physical therapy—and physical therapy alone can sometimes prevent irreversible atrophy . . .

But she had stopped listening. Although she made a follow-up appointment, it was clear that she would not return. She did not do physical therapy. She told me she wanted to try the ketamine coma but did not have the $50,000 it can cost. Instead, she sought holistic treatments, which failed to arrest the progression of the disease. The critical initial window of time elapsed, and the hand turned into a withered claw, never to be used again. She lost her job and, with it, the family health insurance. Her feared-for self became her actual self.

I puzzled over her story for a long time. It seemed like a parable of the failure of pain medicine, whose lessons were not fully clear to me. So often, I felt that the treatment failed because the patient didn’t “buy” it. But in this case, was there anything the doctor could have done? What he had to sell (a treatment that might not work) was not very attractive, and he was honest about that. Was he too honest? Or was the problem that he had failed to use his powers (the strength of his personality, charm, empathy, expertise, or authority) to persuade her that, inadequate though it was,
this treatment was her only hope.
I thought about the alternative practitioners I had observed. I had been struck by how little they offered in the way of sound treatment, but they all possessed some kind of personal power; they knew how to evoke belief, and their patients actually followed their suggestions.

The last time I called to check in on Elena, her husband told me she didn’t want to come to the phone.

THE RUSTLING OF STRANGE WINGS

A 2005 Stanford University survey found that people in pain ranked the two most effective treatments as prayer and prescription drugs. I puzzled over this pairing when I came across it. Prayer?
Prayer?
Most of those who used prayer relied on it in combination with drugs, and ranked them together.

I added prayer to the questions I was in the habit of asking patients after observing their appointments. Would they like their doctor to pray with them or for them?

Most patients said yes. Their doctors’ reactions were almost comically different. “Seriously?” several doctors asked. An orthopedic surgeon recalled how, once—just as the anesthesiologist was about to put his patient under to begin a laminectomy—the woman had asked them to pause and join her in a prayer. The three men—poised, focused, and energized to perform the task they had trained so many years to master, cutting through the layers of soft tissue to excise the bony lamina—froze. They eyed one another uneasily.

They could close their eyes perfunctorily for a moment, but the specter of another realm intruded unsettlingly upon them. Of course, they didn’t believe prayer affected surgery (after all, presumably she had prayed to God to cure her pain without surgery). But what if, inexplicably, the prayers now worked? What if an angel floated into the room during the operation and stood there shimmering? Would they freeze in wonderment, fumbling with their scalpels, and let the patient perish? Or would they be able to ignore the rustling of strange wings?

“The anesthesiologist finally mumbled, ‘I guess we could have a moment of silence,’ ” the surgeon recalled. “Then the patient prayed aloud! For, like,
six minutes
, while we’re all standing there in the OR, waiting to do our job. I prayed to regain my concentration.”

He glanced at me anxiously. “You wouldn’t want your doctor to pray with you, would you?” he said.

I assured him I would not. I pictured myself feeling suspicious that the doctor was displacing his responsibility onto the type of intervening God I didn’t believe in (and felt relieved not to believe in, lest I be angry at His failure to cure me and therefore accentuate my pain through
negative religiosity
). Yet why—I wondered—was it so important to me to feel that my doctor truly
wanted
me to get well?

I recalled an interaction I had once had with a doctor whom I was seeing for a medical problem unrelated to pain. The doctor had made a small gesture—one that he no doubt forgot minutes after it happened, but which was of great importance to me.

I had gone to the clinic early in the morning for a test that would reveal whether the treatment I had undergone with this doctor had succeeded. A technician performed the test. As I was leaving the clinic, I glimpsed the doctor across the reception desk, on the far side of the room. He held up his hand, crossing his fingers. He was wishing me luck, reminding me that the treatment was over, my fate was now up to chance, for—powerful though he was in my mind—he did not possess the kind of power that determines lab results. But he was also telling me that he hoped that chance went my way.

I had previously undergone treatment with other doctors; each time the treatment failed, I had switched doctors again. At the end of my initial consultation with one of them, I had asked whether he was optimistic or pessimistic about my case. “Pessimistic,” he replied immediately. “You’d need to be lucky.” The way he said it made it clear that he thought it was unlikely. After all, had I been lucky in that respect, I wouldn’t be seeing him. When the treatment failed, I associated my unluckiness with his pessimism and found yet another new doctor.

I had asked the nurse to leave the result on my voice mail later that day so I could listen to it alone. The treatment had failed again. I lay down on my bed, too disappointed to cry. I closed my eyes, and the image of crossed fingers came to mind—a stay against the darkness. I suffered from that failure in many ways, but I did not suffer from loss of faith in my doctor.

GHOST OF A MEDICAL MEANING

When the doctor explains to the patient what’s wrong, he imagines that she is a blank slate—baffled by her pain and waiting for an explanation that she will wholeheartedly accept, since he, not she, has the correct information. If she had any interpretation of her pain before, she will naturally immediately relinquish it in the face of his overwhelming expertise.

Yet by the time the patient comes in, she has a long, intimate relationship with her pain, developed over months or years. Her perspective—the personal, radically subjective experience of pain—bears no relation to the scientific perspective, the objective, biomechanical view. She and the doctor do not speak the same language. The patient knows pain intimately—its taste, texture, and quality—and in one sense she is the only one who can know it. But from a physician’s perspective, she knows nothing about it.

One of the doctors I observed kept a yellow plastic skeleton in his office. As he earnestly explained to patients their problems, he would point helpfully to the skeleton. The patients would look at him with the same baffled horror I recalled having as they realized that he thought there was an analogy between
it
and
them.

While the doctor uses medical science to understand pain, the patient has constructed a personal narrative, one that weaves religious, mythical, and psychological elements with fragments of science, like a spider’s web, suspending the patient above the abyss. Some of these narratives relieve suffering; others add to it.

In her memoir of rheumatoid arthritis,
Out of Joint
, Mary Felstiner writes of her fantasy of an Angel of Anatomy that descended on her after the birth of her beloved daughter Sarah, sparing her daughter and settling on her. The fantasy was inspired by something she had once read, to the effect that there is a higher incidence of the onset of RA following childbirth. The fantasy seems positive, turning her disease (about which she had no choice) into the necessary consequence of a joyful choice—the price of having a child. She also imagines that the Angel of Anatomy will spare her other diseases, since in having RA, she’s done her share.

But most medical fantasies are not positive. Olive, who had come to a pain clinic I was visiting, had developed chronic burning pain in her breast following a mastectomy. Speaking with her afterward, I came to see that she and the doctor had very different interpretations of this pain. A forty-seven-year-old executive at a financial firm, she was used to making data-driven conclusions. In regard to her body, however, she had taken a ghost of medical fact and perverted it to torture herself with.

She had read that women who had babies had a reduced risk of breast cancer. When she was younger, she had terminated two pregnancies. If she had had a baby instead of an abortion, she reasoned, she wouldn’t have had the cancer. (In fact, she had had the abortions in her thirties, and the dramatic reduction in breast cancer occurs only in women who have a baby before age twenty; having children after age thirty actually
increases
the risk.) The cancer turned out not to be an enduring punishment, after all, though; it went into remission. But she was left with an eternal reproach—the pain. The pain was a punishment for the abortions. If it weren’t a personal punishment, she wondered, why did she, in particular, have pain from her mastectomy when other women had none?

Had she and the doctor been communicating well enough that he had ferreted this out of her, he could have given her the medical explanation. Indeed, a significant percent of women used to complain of chronic pain following radical mastectomies. Their pain was often interpreted as a psychological phenomenon: they were just “missing” their breasts. But in the early 1980s, Dr. Kathleen Foley at Memorial Sloan-Kettering Cancer Center in New York identified the pain as being caused by the severing of a major thoracic nerve during surgery. The technique is often performed now in such a way as to spare the nerve, but in Olive’s case the nerve had been damaged. And apparently Olive was part of the fraction of the population that has a genetic predisposition for developing chronic neuropathic pain.

But that conversation with her doctor never occurred. Although the pain medication he prescribed eased her pain, it failed to address the suffering that arose from her mistaken understanding.