The Pain Chronicles (33 page)

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 from 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.

“It’s not broken,” he pronounced cheerfully.

“Oh . . . Umm, how do you know?”

“It would hurt a lot.”

“Well, it does hurt. That’s why I’m calling . . .” I said, feeling less certain.

“It would hurt more,” he said definitively.

Upon reflection, I decided that perhaps it didn’t hurt as much as I had thought. For the next few hours he seemed to be right, but I still couldn’t walk, and then—even as I lay there quietly—the pain grew. It was as if Luke’s assurance had put the pain in a box called
not-even-broken
that contained it for a while, but then the pain welled up and began to seep through the walls of the construct.

I called him back.

“It doesn’t hurt the way a break would,” he said. His certainty reframed the sensation once again. By the time the pain overflowed again, Zach had come over. “Why didn’t you go to the doctor?” he reproached me. “You are so star-crossed.” I began to cry.

Two of the toes were fractured. I knew I would never be able to call Luke about a medical problem again. Indeed, at times in our friendship after that when I felt that Luke was dismissive of my chronic pain, the dismissal did not succeed in dismissing the pain. I just felt more alone with it. It was the Placebo Dilemma again. Expectation may rival nociception, but it’s impossible to make use of that fact, because as soon as you know your relief is only placebo, your expectations collapse. The genie is ingenious; he never falls for the same trick twice.

THE ANESTHESIA OF BELIEF

At times, when my chronic pain was tormenting me, the sight of the scar from the pain toleration test—a slightly darkened square of skin beneath the round face of my watch—both reassured and reproached me.
Here
, I’d think,
is the ultimate proof that my mind can control pain.
Yet how to make it do so with my real pain, the pain that wasn’t experimental? The scar continued to fade so that after a few years it was visible only in certain lights, and the testament to my modulatory system seemed like a relic in which my faith was waning.

I thought of a story I had read of a 1930s Thai Buddhist monk named Sao Man who had a disciple who was racked with pain from malaria. Sao Man declared that “instead of trying to relieve physical symptoms, monks should go to the root of distress and cure their minds” and “observe the pain without reacting, for thereby they would realize the truth of suffering.”

Observing my pain is exactly what I want to do. I want to watch my mind at work as it generates pain, and then change it, the way a computer programmer can fix a glitch in the code or Vermeer might have painted over some of those clouds. I want to conduct the neurons of my brain as if they were an orchestra making discordant music. Those areas generating pain—
pianissimo!
Those areas that are supposed to be alleviating pain—
fortissimo!
Down-regulate pain-perception circuitry. Upregulate pain-modulation circuitry.
Pronto.

For most of history, the idea of watching the mind at work was as fantastical as documenting a ghost. You could break into the haunted house—slice the brain open—but all you would find would be the house itself, the architecture of the brain rather than its invisible occupant. Photographing it with X-rays resulted only in pictures of the shell of the house, the skull. The invention of the CT scan and the MRI were great advances because they reveal tissue as well as bone—the wallpaper as well as the walls—but the ghost still didn’t show up. The photographs they produce are static. Consciousness remained elusive.

A newer form of MRI, functional magnetic resonance imaging (fMRI)—as well as a related technology, positron emission tomography (PET) scans—used with increasingly sophisticated software, aspires to watch a living brain at work. The films show parts of the brain becoming active under various stimuli by detecting areas of increased blood flow connected with the faster firing of nerve cells. For the first time in history, one can give a subject a painful shock and observe the person’s brain creating an experience of pain.

“There is an interesting irony to pain,” Christopher deCharms, a neurophysiologist and pain researcher, told me. “Everyone is born with a system designed to turn off pain. There isn’t an obvious mechanism to turn off other diseases, like Parkinson’s. With pain, the system is there, but we don’t have control over the dial.”

Dr. deCharms has collaborated with Sean Mackey to develop a science fiction–like investigational technique whose goal is to teach people to control their own “dials”: to activate their modulatory systems without the stress of fleeing a shark or the deception of a placebo. Usually, brain imaging involves subjects who are scanned and researchers who analyze the scan. But what if the functional imaging machine could be equipped with an internal screen so that the subjects themselves could watch a scan of their own brain activity in real time, as their brains respond to pain? Would seeing their pain-modulation circuits at work enable subjects to learn how to control them more effectively?

Using real-time functional neuroimaging (real-time fMRIs), Dr. deCharms and Dr. Mackey asked volunteers, over the course of six sessions, to try to increase and to decrease their pain while watching a screen that showed the activation of the part of their brains involved in pain perception and modulation. Traditional biofeedback has proved that individuals can be trained to control autonomic bodily functions—such as heart rate, skin temperature, and even rhythms of electrical activity in the brain previously considered beyond volition—by using measurements of those functions. But such measurements only indirectly reflect the brain’s activity. By contrast, Dr. deCharms and Mackey’s technique, which they term
neuroimaging therapy
, allows subjects to interact (in a sense) with the brain itself.

The hope of neuroimaging therapy is that regular practice will strengthen the ineffective modulatory system so as to eliminate chronic pain, the way long-term physical therapy can eliminate muscular weakness. The scan would actually
be
the treatment, the subject his or her own researcher.

In preparation for the scans, subjects are trained in three types of pain-control strategy: changing their attention to the pain (to focus on or away from the pain); changing their assessment of the pain (to perceive it as more or less intense); and changing their perception of the stimulus (as a neutral sensory experience instead of a damaging, frightening, and overwhelming experience).

Although functional imaging studies have shown that distraction reduces pain, Dr. deCharms believes that paradoxically, an alternative approach to relieving pain is to focus directly on it, which he believes can activate the pain-modulatory system. He personally feels that for chronic pain sufferers, “the technique of distraction may not provide much benefit, because it takes you away from your pain for a few moments, but as soon as you stop distracting yourself, the pain is there again—unchanged.”

He had recently suffered from a bout of neck pain himself and decided to see if neuroimaging therapy could help. But when he tried to focus on the pain in the scanner, he found it curiously difficult to do. “Even though it felt like the pain in the scanner was all I thought about—and all I talked about—I wasn’t really focusing on it. The mind will do anything to avoid focusing on pain.” Yet, when he succeeded in focusing on it, he “could feel pain melt away. I perceived myself as upregulating the pain-control system. It was a feeling similar to a ‘runner’s high.’”

Dayna—a middle-aged woman who had been unable to work because of back pain for several years—told me how she discovered that trying to distract herself from her pain with positive imagery actually worsened her pain. “I would picture horseback riding and hiking and all the fun, fun things I used to do,” she told me. “In the scanner, I could see that these things were causing an increase in my brain activity because I associate them with a sense of loss—with knowing I can’t do them anymore. I realized I needed to think of some new things.” She tried, instead, to focus on accepting and even embracing pain. “I had an image of myself dancing with the pain,” she said, and as they began to dance, she felt her pain transform from a stalker to a partner.

Please let it work for me
, I thought.

Distraction had always been the most successful pain relief technique for me. Once, when I first had pain, I curled up in bed and cried. I had often done this when a romantic relationship ended, and the indulgence always made me feel better. But this time, when I finished crying, the pain was not only not better—it was worse. “Pain is not dissolved by tears, it is watered by them,” I wrote in my diary. After that, when I had too much pain to do anything productive, I went to a movie or walked to a bakery and bought a marshmallow Rice Krispies treat. But I had never tried to focus calmly on the pain itself.

In one sense, neuroimaging therapy is simply a high-tech way to learn the ancient religious technique of meditation—by trying to make the process more transparent. But as Dr. Mackey pointed out, “it takes Buddhist monks thirty years of sitting on a mountain to learn control of their brains through meditation. We’re trying to jump-start that process.”

I had looked at pain through the premodern lens of metaphor, religion, and magic; I had looked at pain through the modern lens of biology and disease. Both had proved inadequate. I wanted to understand pain through a new paradigm, a postmodern paradigm, as it were, that would use the magic of science to see the science of magic—and to find treatments that would draw upon that understanding.

Lying on my back in a large plastic fMRI machine in the Stanford University lab, I peer through 3-D goggles at a small screen. The machine makes a deep rattling sound, and an image flickers before me: my brain. Me.
I am looking at my own brain as it thinks my thoughts, including these thoughts.

“It’s the mind-body problem, right there on the screen,” Christopher deCharms commented later. “We are doing something that people have wanted to do for thousands of years. Descartes said, ‘I think, therefore I am.’ Now we’re watching that process as it unfolds.”

The screen shows activation of the rACC—the part of the limbic system that gives pain its emotional valence. The pain of pain, as it were, is the way it’s suffused with a particular unpleasantness—the sadness, anxiety, distress, and dislike that researchers refer to as
dysphoria
—a reaction so fierce that you are instantly compelled to try to make the stimulus cease, not in five minutes, not in five seconds,
now.
You can feel heat or cold or pressure, and note them simply as stimuli, but as soon as those stimuli exceed a certain intensity, the rACC activates, riveting your attention, filling you with dysphoria, and causing you to try desperately to put an end to it.

The rACC is represented by a 3-D image of a fire in which the height of the flames corresponds to the degree of rACC activation. Subjects undergo five thirteen-minute scanning runs, each consisting of five cycles of rest followed by intervals during which they try to increase rACC activation and then decrease it.

“Increase Your Pain,” the screen commands as the first run begins. I try to recall the mental strategies in which I had been instructed for increasing pain:
Dwell on how hopeless, depressed, or lonely you felt when your pain was most severe. Imagine that the pain will never end. Sense that the pain is causing long-term damage.

I picture the pain—soggy, moldy, or perhaps ashy, like smokers’ lungs. “Pain spreads out and pollutes the brain,” John Keltner had told me. “It actually poisons and infects your brain.”

In three months, it would be ten years since the day I went swimming with Kurt and first acquired pain. What had it done to my brain? The Apkarian study suggested that 1.3 cubic centimeters of the gray matter of the brain is lost with each year of chronic pain. If I multiply that by ten . . . On the screen, the flames of my rACC explode. I feed the flames further by thinking of descriptions of the burning of heretics in
Foxe’s Book of Martyrs.

“Decrease Your Pain,” the screen commands.

The suggested pain-reduction strategies do little to quell the flames.
Tell yourself it’s just a completely harmless, short-term tactile sensation.
I try to suffocate the pain with banal positive imagery of “flowing water or honey” and to picture myself in a “favorite vacation spot such as the mountains or the beach.”

“Every pain-free moment competes with the onslaught of the chronic pain experience,” John Keltner had told me. “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.” But my mind keeps slipping back to the auto-da-fé, and the rACC fire flares.

What if I
were
a martyr? I think of the story of Rabbi Akiva, who recited a prayer with a smile on his lips as the flesh was being combed from his bones for defying the Roman prohibition on Torah study. “All my life,” he explained to the puzzled governor orchestrating his execution, “when I said the words, ‘You shall love the Lord your God with all your heart, with all your soul, and with all your might,’ I was saddened, for I thought,
When shall I be able to fulfill this command?
Now that I am giving my life and my resolution remains firm, should I not smile?”

“Fortunate are you, Rabbi Akiva, to be martyred for the sake of Torah,” the Talmud cheerfully concludes.

During my next Decrease Pain interval, I focus on myself as a martyr. (Jewish? Christian? Witch?).
Fortunate are you,
I tell myself,
to have this opportunity to lucidly recite a prayer of some faith while being burned at the stake. Fortunate are you to be so persuaded of your faith to see this opportunity as fortunate . . .
My rACC activation respectfully subsides.

But there was a twist, I recall, in the case of witches. Witches were sometimes believed to have insensitive areas, called devil’s marks, which could be discovered by sticking pins in them. A lack of pain could constitute proof of sorcery! As soon as I focus on the need to feel the pain of the pinpricks to establish my innocence, my rACC helpfully flares. Soon I have the strategy down. Heretic-martyr: rACC low. Heretic-witch: rACC high.

I try to recall theories of the physiological mechanisms thought to account for the belief-induced anesthesia of heretic-martyrs. Perhaps they are in a trance—a state of autosuggestion or self-hypnosis. Or perhaps they benefit from “counterpleasure”: if their pain serves a higher psychological goal, they might experience it as strengthening, rather than damaging, their ego. In
Sacred Pain
, Ariel Glucklich theorizes that intense pain can cause both a massive release of beta-endorphins and a sense of disassociation, which frees one from the anxieties and desires that normally constitute the self. He terms the resulting euphoria “hyperstimulation analgesia.”