The Pain Chronicles

by Melanie Thernstrom

  Although the surgeries were performed only on patients who had passed the training, there were others for whom acupuncture failed to have any effect. Not everyone, it turns out, can learn to achieve a trance; only some people are “highly hypnotizable.” The explanation for this has long remained elusive. Do such people simply have greater abilities to concentrate, to focus attention, to perceive only what they want to perceive?

  Recently, neuroimaging has provided some clues toward an explanation, showing that the brains of the highly hypnotizable are actually different from those who are not. An area of the brain (known as the anterior corpus callosum) that is involved in attention is about a third larger in those who are highly hypnotizable. Moreover, highly hypnotizable people turn out to have above-average abilities, in general, to control pain, because they are better able to filter out unwanted stimuli.

  When I began researching pain, I assumed that the patients who told me their pain could be alleviated by hypnosis, acupuncture, meditation, or any other alternative treatment must not be in real pain. I was wrong. Some of the patients with the most severe conditions were helped by these kinds of techniques. For example, one of the worst forms of pain is central pain: pain caused by pathology of the central nervous system itself, common to multiple sclerosis, spinal cord injuries, and certain types of brain tumors and strokes that affect the thalamus. Holly Wilson (who was paralyzed by a botched surgery) told me that the only time she is free from the burning pain of the spinal cord injury she refers to as her “shadow” is when she’s under hypnosis. Lily—a sixteen-year-old dying of a rare genetic disease at a children’s hospital—recalled the one time her pain momentarily disappeared. With her wasted body curled in a fetal position, hooked up to a cadre of machines, Lily had a chart a thousand pages long; she had spent much of the last six years living in the hospital. A team of renowned specialists consulted regularly on her case. I had thought she would want to tell me about the care she had received from the distinguished, compassionate head of the pediatric pain service whose practice I had been observing. But the memory that made her face light up was a woman who once worked for the hospital in a clerical capacity but then moved away. “She laid her hands on me,” Lily said with great feeling.

  “She didn’t even touch her,” Lily’s mother explained with equal enthusiasm. “She simply held her hands above her!”

  On assignments in Africa I had been baffled by the testaments to pain treatments that appeared to have nothing to do with medical science. In Rwanda, a man with a pattern of burn marks encircling his forehead told me that he had undergone a traditional treatment for migraines that had cured his chronic headaches.

  “Didn’t it hurt?” I asked, trying to keep the horror from my voice. I had had a series of migraines during that trip, and worryingly, I was down to my last pill of Zomig, my favorite migraine medicine. I suspected there was no Zomig for sale anywhere in Rwanda.

  “The more the treatment hurts, the more powerful it is,” my translator said. “The treatment only hurts once, whereas the headaches used to hurt him every day. You should try it. If that headache medicine you take worked, you wouldn’t have to take it all the time.”

  “I don’t take it all the time,” I said peevishly. I’d like to take it all the time because my occipital neuralgia gives me continual migraines, but my insurance pays for only six tablets of Zomig a month, each of which costs twenty-nine dollars. At home, I hoard the pink tablets, each wrapped in its own foil, but once in a while I use them all up, and then, during the next headache, I have to stumble to the pharmacy to buy an extra one. I always feel vaguely ashamed on these occasions and pay cash and crumple the receipt.

  In the context of Africa, a $29 headache is obscene—an obscene overvaluing of my pain and undervaluing of the pain all around me. Yet at times, when I encountered Africans—people missing shoes, teeth, limbs—it would strike me that many of them seemed less discontented than I. Perhaps they thought of pain as part of the fabric of life, whereas I expected my life to be physically painless, and I endlessly grieved that it wasn’t. I needed a cure for my pain, or I needed a cure for my belief that my pain needed to be cured.

  When I asked John Keltner which alternative treatment works best, he shrugged.

  “In my Zen way,” he said ironically, “I’d say you’re asking the wrong question. They can all work equally well because the magic isn’t in the technique; the magic takes place in your head.”

  It’s because the magic takes place in your head that such disparate interventions as ritual scarification, Zomig, hypnosis, and opioids can have the same effects. The variety of alternative techniques might be thought of as the array of props in a religious rite: it is not the lighting of the candles, the pouring of the wine, or the recital of the blessing that makes the Sabbath sacred. Each may—or may not—lead the way into the sacred space, the place where magic happens.

  Yet do the effects of magic moments endure? Aren’t you the same pained person the minute you stop meditating?

  Dr. Keltner paused.

  “Every pain-free moment competes with the onslaught of the chronic pain experience,” he said. “Pain is supposed to be the warning for something that is literally life-threatening. With chronic pain, every experience, every movement, every situation gets inappropriately stamped and experienced in the mind as life-threatening. We’re not supposed to be exposed to danger all the time, and we’re not supposed to be hearing an alarm bell all the time. You can see how pain has the potential to make someone go insane.”

  The devastation of chronic pain is the way in which, over time, it “spreads out and pollutes the brain.” He drew an analogy to phantom limb pain: if you cut four fingers off a hand, the neural area in the brain (the homunculus) that represents the remaining finger tends to grow, expanding into the areas that used to represent the other four fingers. The homunculus’s remaining finger eventually swells to encompass the space once occupied by all five digits.

  In the same way, he said, “pain is such a persistent, relentless experience, it actually poisons and infects your brain. Pleasure and relaxation are at a disadvantage compared to pain because, while pain dominates and imprints on consciousness, they are typically quiet, subtle states. People need to find a way to have experiences that are not only pleasurable but are as important and riveting as pain. Religious experiences can be that powerful, but unfortunately, doctors can’t prescribe religion. But by whatever technique—sex, intimate conversation, listening to music—people need to create moments when their attention is sufficiently drawn away from pain that they are almost pain-free, so that they can begin to recondition and reclaim their brains.”

  A LESS DIRE NARRATIVE

  For some, simply knowing that the brain creates and controls pain provides that control. The writer Susan Cheever told me that when she developed back pain, her doctor diagnosed her with—in short—aging. She was in her early sixties, showing signs of arthritis and scoliosis. But she had always been outstandingly healthy, athletic, and youthful-looking, and she did not care for the idea of these things changing. She decided to consult with John Sarno. After examining her, Dr. Sarno authoritatively declared, “This pain is not being caused by your arthritis or scoliosis or any other mechanical problem. It is being caused by your brain.”

  The truism struck her as a revelation. “I know all about being led astray by my brain,” she said wryly. The next time she felt leg pain, she thought of Sarno’s theory of TMS—how repressed negative emotions cause pain and muscle tension. She told herself that the pain was not caused by problems in the disks of her spine: “It’s caused by my brain, distracting me from my unacknowledged grief and rage.” She noticed that crying relieved her pain. She enrolled in his workshop and began the long project of “reeducating a certain part of my brain to think about another part of my brain in a different way.” The day of a friend’s memorial service, the pain vanished from her leg and reappeared in her upper back. “I thought, Oh, come on —this is so
obvious.”

  When she told Dr. Sarno how difficult her childhood had been as the daughter of the troubled writer John Cheever, he expressed surprise at how well she was doing and attributed it to the power of her imagination to transform emotional pain and loss into her own writing. He enjoined her to use that power to transform her experience of bodily pain.

  She became aware of the way that each time she felt the sensation of pain, she began to embellish it into an ominous narrative. At the first pinch of a headache, she would begin to write an internal story whose opening scene was a cloudy afternoon in Central Park and whose end was her death by brain tumor. “I have an apocalyptic imagination,” she said. “Sarno gave me a much less dire narrative. Instead of thinking, Maybe this is the first sign of my death, I started thinking, Maybe this is nothing. Maybe this is psychosomatic. And when I did, my pains vanished. Poof.”

  She opened her hands with the same gesture as the priest in the Batu Caves: as if pain were something one might, simply, let go of.

  I felt very envious.

  Even though I knew that one of the four types of pain is psychogenic pain, the simplicity of Susan’s story surprised me. But I knew that although Dr. Sarno’s model doesn’t work for everyone, he wouldn’t have become popular unless it worked for some. I’ve heard other doctors express skepticism about his doctrines, but since pain is a perception, there is no such thing as fraudulent pain relief.

  I was half tempted to consult with Dr. Sarno myself, but a telling characteristic of TMS is that the location of the patient’s pain continually shifts. My pain was nothing if not stable. The right side of my face and forehead always hurt; the left side felt fine. My neck was never fine. Sometimes I pictured myself in my coffin, the pain finally fled, and the image would both comfort and alarm me.

  Pain Diary:

  I Try to Change My Perception

  My mood today was: 0 (GOOD)–5 (BAD)

  My level of pain today was: 0 (MILD)–5 (SEVERE)

  I could read about the workings of the pain-modulatory system all day, but I could not channel it. Thomas Aquinas, the pilgrims at Thaipusam, and Susan Cheever might be blessed with mastery over their perceptions and compliant modulatory systems, but the aspect of my pain I felt most certain about was that it was not voluntary—a belief that was reinforced every day I had pain, which was every day. My modulatory system was like a genie trapped in some fold of my brain, unresponsive to commands. If it had a password, it was not one I had forgotten, but one I had never known. It occasionally emerged of its own accord for an emergency, such as a broken bone (at least long enough to allow for a psychotherapy session), but it could not be summoned.

  No one knows why some people’s modulatory systems can be activated by placebo while others’ cannot. One theory of placebo is that it is a function of personality—certain kinds of people invest authority in physicians and believe what their doctors tell them.

  I myself don’t care for authority figures, but I am extremely suggestible. I don’t believe in spirits, but if someone tells me a place is haunted, I shiver. I love symbols and metaphors and the costly healing tin of tea I bought in Beijing, inscribed with words that seem powerful because I can’t read them. I would have guessed I would be a model placebo responder. But I made many attempts to treat my pain with alternative techniques, and none of them worked—and placebo failed to add even a smidgeon of magic. I tried hypnosis, meditation, and acupuncture (which most pain doctors I talked to believe is placebo, although they didn’t want to be quoted as saying so). I found them all relaxing, but afterward, my pain seemed the same. I tried homeopathy, which all the pain doctors I interviewed agreed is placebo, because the medicinal substances are so diluted as to be pharmacologically inert. I didn’t know that when I tried it, though, so I brought positive expectations to bear, and it still failed. Massage does help, but the effects don’t last.

  Disappointingly, the treatments that help me the most are the conventional ones: physical therapy, Botox injections, Celebrex (and long-lost Vioxx), and tramadol, a quirky painkiller whose mechanisms of action are not fully understood, but which acts on the brain in several ways, including on the serotonin and noradrenaline systems.

  My pain diary asked me to rank my pain daily on a scale of 0 to 5. I used to rate it with 4s and 5s; after years of treatment, it was usually a 3. Sometimes it was a 4, and sometimes it was dreadful, but at other times it was a 2, and occasionally I could mentally stretch into a 1. I noticed that rating it as a 1 cheered me, but rating it as a 0 just felt like a lie. The fact that it was so clearly a lie embarrassed me, after all the pain research I had done (even though that research reiterated that chronic pain is a chronic disease, like diabetes and that reducing pain to a manageable level, as I had, is a positive outcome). Still, if Susan Cheever and Danielle Parker and lots of others could be more or less cured, why not me? What about the power of my mind? Aren’t I imaginative?

  Even my most beautiful days sometimes seemed to me like the Vermeer painting of the town of Delft on a summer afternoon, where, above the still spires and shimmering river, the clouds hang oppressively low, and gloom and mortality press.

  Sean Mackey, the head of the Stanford pain service, was working on a study about the effects on pain of cognitive control, using guided imagery. He recalled how, when he started working with pain patients, he “realized how much of the treatment involved trying to reverse learned helplessness”—to rally them out of the despair ingrained by years of unremitting pain and to cajole their minds to offer up the analgesic that the minds themselves are capable of creating.

  The theory of learned helplessness builds on the observation that if you give dogs inescapable electrical shocks, two-thirds of them will internalize the notion that they cannot avoid pain and victimization. Later—when put in a setting where they can escape the shocks simply by jumping over a low barrier—those dogs will not even try and will instead lie on the ground, flatten their ears, and whine.

  I had always associated learned helplessness with whining dogs. But what about the one-third of dogs who leap away?

  “This applies to people, too—in roughly the same proportions of resilience and resignation,” he said. Pain upsets and destroys the nature of the person who has it—but not always. Like the electric shocks, chronic pain is a repetitive, punishing stimulus over which subjects don’t have control, and it creates learned helplessness in most patients. “How do we undo this effect?” Dr. Mackey asked. “I want to show patients that their mind matters.”

  Did I have learned helplessness? Dr. Mackey pointed to three key criteria in the theory: the subject must perceive the negative stimulus as personal, pervasive, and permanent.

  I long ago rejected the idea that my pain is personal, in the sense of a symptom or symbol of any kind. I tried to think and talk about it straightforwardly—as a fact, not a private sorrow. It did feel pervasive, though, since it was always there, and although I hoped it wasn’t permanent, I feared it was. But perhaps it is permanent; being realistic shouldn’t make me a whining dog. Then again, in researching pain, since I now knew that pain is a perception, did it therefore follow that the barrier was only as high as I perceived it to be?

  I asked Dr. Mackey for a clinical demonstration of his study. He attached a metal probe, which heated up and cooled down at set intervals, to the back of my wrist. I was told that although the heat probe would feel uncomfortable, my skin would not be burned. (Indeed, an important limitation of pain research in humans is that researchers cannot cause subjects serious tissue damage.) During one exposure I was instructed to think of the pain as positively as possible; during another, to think of it as negatively as possible. After each exposure I was asked to rate my pain on a 0-to-10 scale, with 10 being the worst pain I could imagine.

  Although I discovered that I could make the pain fluctuate according to whether I was imagining that I was immersed in a lovely Jacuzzi or was the victim of an inquisition, I still rated all the pain as low, ranging f
rom a 1 to a 3. If 10 were being burned alive, I thought I should at least be begging for mercy to justify a rating of 5. So I insisted that Dr. Mackey turn up the dial. I was surprised at how hot it felt, given that it couldn’t be burning me. But even when I was trying my hardest to imagine the pain as negatively as possible, Dr. Mackey’s initial assurance kept it from really hurting—hurting, that is, the way a burn would.

  Afterward my skin reddened and then began to pucker and blister. Dr. Mackey was more than a little dismayed, but I was thrilled. It was a second-degree burn that eventually darkened into a square mark like a brand. The study’s protocol had been carefully established to avoid injuring anyone, yet in my case that protection had failed because of the very phenomenon under study: the effect of the mind on pain. By that point I had spent several weeks observing Dr. Mackey’s pain clinic. I was so convinced that he would not burn me that my brain had not perceived the stimulus as a threat. I admired him, I trusted him, I was positive that he wouldn’t hurt me. And ipso facto, through the power of the placebo effect, he didn’t.

  Only once before had my modulatory system been similarly deceived into dispensing with pain.

  For Valentine’s Day a few years before, I had received a huge pink heart-shaped bar of soap, the size of a small coconut, from my boyfriend Zach. It would nest only in a giant’s hand, so perhaps it was intended to be purely decorative. In what I tried not to see as a metaphor for the relationship (although, like the door accident, it was), the first time I tried to use it in the shower, the soap-heart slipped from my grasp and smashed my toes. It was startlingly painful. I curled up in a ball for an hour, and then I called Zach. I couldn’t reach him, and I wanted to talk to a boyfriend-type, so I called my former boyfriend, Luke.