She enrolled in a treatment program of Dr. John Sarno—the famous back pain guru whose book I had read at my friends’ beach house long ago. But she felt skeptical of his theory of TMS (tension myositis syndrome), according to which repressed negative emotions cause pain and muscle tension, and when you let go of the emotions, the pain disappears. “It’s ludicrous for some doctor to say it’s completely in your head—it makes you feel crazy. There is a physical root. Moreover, he had my husband convinced. Danielle’s gone through trauma—let’s blame it on Danielle’s mother’s murder.”
The loss was compounded by the fact that the crime remained unsolved and Dani felt she needed to stay actively involved to bring attention to the case. The details were all so devastating. The last place her mother was seen alive was a convenience store. The store’s security tape might have captured the killer, but, she told me, the detective assigned to the case took the day off after the murder and the store erased the tape.
The simple causal link Dr. Sarno was making between Dani’s pain and her mother’s murder seemed illogical; she hadn’t developed pain until four years later. And she felt her fragile mental health was caused by—rather than the cause of—her pain. “If you’re in goddamn pain all the time, of course it’s going to mess you up,” she said.
Dr. Sarno instructed her to write in a journal, she said, to explore childhood trauma, but she couldn’t think of any—she felt she had a wonderful childhood. She wrote poetry about the loss of her mother, but it just made her cry. “Bringing back her murder, I’d get more pain. Negativity is part of pain.”
Dani recalled the way in which Dr. Sarno bristled when she questioned him about his methods, and he insisted that she quit PT, which he told her is harmful because it focuses on the body instead of the mind, which he considered the root cause of pain. She replied that she had muscle spasms and needed the relief provided by the massage technique her physical therapist employed, but he told her, “If you can’t follow the program, you’re out.” She wondered if that was how he achieved his vaunted high success rate: from kicking the failures out of his program.
“I’m sure there are some patients who actually have TMS and are helped,” she said, “but his program made me worse.”
In talking to me, Dani struggled to come up with a positive narrative—one that reconciled pain with her self-image. “I believe there are a lot of people who wind up crazy. But I’m a fighter, a survivor—that’s part of the story, too. I have this curse that I’m living with, but I’m learning to live with something that most people would consider unlivable.” Still, she added, her “greatest wish in life is to have a solution—I pray every day.”
A PARTNER IN WELLNESS
Dr. Portenoy had no doubt that seeing doctor after doctor was not helping Dani. But although she half agreed with him, pain kept pushing her on.
Eight years after the initial injury she and her husband were on vacation in Aspen, Colorado, when she noticed a sign in the lobby of the St. Regis Resort for the Aspen Back Institute. “I’ve already been to eighty-four doctors,” she told her husband. “Might as well make it eighty-five.” The institute’s website described it as “a unique, non-surgical oasis for injured backs and bodies” and sported testimonies from celebrities, athletes, and businessmen who had been reunited with their golf games.
The founder, Clint Phillips, had trained as a chiropractor in South Africa and had come to Aspen (of all places) to pursue his passion for rugby. With his earnest gaze and his chiseled jaw and shoulders, Clint looks like someone who could inspire people to work with him for many reasons. “Back pain is so misunderstood,” he says in his seductive South African accent, looking directly into the camera on the website’s video. “Let me teach you the secrets that doctors don’t know or that they won’t tell you . . .”
Dani decided to test Clint by not telling the full story and seeing what he could discern. When he felt her back, he was able to pick out the muscles in spasm and show her that they were trigger points (muscle knots that are tender to touch and refer pain to other areas). She was astonished; she felt that her pain was speaking to him directly. Many of the fancy physicians she had consulted hadn’t even bothered to examine her. And when she worked with a physical therapist, they had always focused on one area at a time (perhaps for billing purposes) rather than developing a comprehensive rehabilitation program.
Dani extended her vacation so that she could work with Clint for a full three weeks. He came up with a stretching and strengthening program to keep her muscles out of spasm. Each morning, he would work with her and talk to her for an hour. He showed her how, when she wore high heels, it threw her posture out of alignment and strained her back muscles. Although her relationship with Clint is neither mystical nor romantic, the language she uses to describe it borrows from both arenas in attempting to capture its singular importance. “I think he’s a miracle worker. I knew it in one session with Clint—I knew he was the one for me. He represented hope and healing.”
Although she knew that Dr. Portenoy cared about her, the way that Clint related to her felt essentially different. Dr. Portenoy had never suggested that she was fabricating her pain, but neither had he reassured her of his belief. Clint’s faith in her, on the other hand—his understanding of her feared-for self and her hoped-for self—felt tangible. Clint seemed like a healer in the ancient sense of the word: one invested with “a particular potential for witnessing suffering—a charismatic authority,” as the sociologist Arthur Frank puts it. “I had met a lot of doctors before,” Dani said, “but I had never met a healer. He said he was going to treat the body and the mind; he spoke to me about the devastating emotional impact of pain.”
Dani found the way Clint spoke of the importance of the mind much more persuasive than the way Dr. Sarno had done, because Clint’s philosophy involved attention to the body rather than denial of it.
“He breaks the pain cycle, and then he asks, ‘How are we going to get rid of these pain behaviors and change how you respond to pain?’ ” she told me. “Instead of reaching for that pill, you go for a walk, go for a bike ride, move around.” He told her, “You’re going to feel discomfort. Don’t let your mind focus on it when you feel an unpleasant sensation.” He didn’t use the word pain. “In the past, I used to panic as soon as I felt a zing,” she said. “Now I try to focus on something else. I don’t talk to people about my condition anymore. If someone says, ‘How are you?’ I say, ‘I’m great,’ deflect the question, and ask about them.”
After seeing Clint in the morning, she worked with his physical therapists in the afternoon. They massaged her neck and taught her ergonomics and isometric exercises to strengthen her neck and build up shoulder strength. They stressed the importance of posture. Clint explained how the head is like an eight-pound bowling ball, and if you carry it forward, it pulls on all your neck muscles, causing them to spasm. Dani attributed the fact that she can now sit without pain to having strengthened her stomach muscles enough to hold her back in place.
In the afternoon each day in Colorado, she went for a hike. Then she went on her first bike ride in years. She had to walk partway, but on the second day, she made it the whole three and a half miles. She had developed a fear of the gym from her injury, but soon she was doing one-hour circuit training with Clint’s wife, Jade. She recalled how Clint constantly said, “Dani, you’re a young woman, you have a good body.” He called the troubles with her body issues rather than problems. “I was made to believe that I had a bad spine—a defective spine with defective disks that the MRIs showed. But the spine can heal itself with the proper posture and exercise,” she said. He kept telling her, “You’re not sick, you can live a normal life.”
He enticed her into trusting her body again. He didn’t order her to stop taking pain medication, but he suggested that if she could start cutting down, she would be more attuned to her body’s response and that she needed to be able to feel her body again. By that point she was taking six Vicodin ES a d
ay—a substantial dose.
“I was so dependent. I used to walk around all the time with a pillbox. By 1:30, if I hadn’t taken my Vicodin, I’d start craving it,” she said. “I don’t know if my pain was real or if my body was generating pain because it craved medication.” When she finally stopped taking the pills, she realized how they had been affecting her cognitive abilities. By the end of the day, she often found herself watching TV because she didn’t have the concentration to read. The six tablets of Vicodin ES she was taking contained 4,500 mg of acetaminophen (the ingredient in Tylenol), which upset her stomach and put her at risk for liver and kidney disease (above 4,000 mg per day—or 2,000 mg per day for a person who drinks alcohol—can lead to potentially fatal liver damage).
“We’re going to have a party where we burn all the chronic pain books and flush the meds down the toilet,” she said.
Although the Aspen Back Institute is expensive, it was a fraction of what she had spent pursuing futile treatments in previous years. In just three weeks of her program she felt the beginning of “a new identity.” The biggest change, she said, was simply “to realize I’m a normal person—there is nothing wrong with my body.” But “letting go of the emotions of pain is traumatic. If you have pain for eight years, then you become a pain person. I took a twelve-mile bike ride around Manhattan yesterday. I feel great; I feel like an athlete in training. The mind is such a powerful thing.”
She feels that traditional doctors partner with patients in sickness, whereas “with Clint you feel you have someone dedicated to your wellness. Clint looks you in the eyes. He’s in it with you,” she said. When she left Colorado, she said, Clint was worried that she’d revert to hanging out in bed and watching TV, so he scheduled conversations with her. He told her she didn’t need PT—the label would only remind her of being sick (although, of course, the exercise regime he prescribes is a form of physical therapy). She decided instead to rejoin a normal gym.
Like Dr. Sarno, Clint used cognitive reframing, preaching a shift in narrative from sick to well. But unlike Dr. Sarno, he did not insist that if you believed his theory, you could make your pain simply melt away. Rather, Clint’s narrative used belief to make its premise true by transforming the body physiologically, as well as psychologically, through exercise.
Physical therapy is the most effective treatment for most back pain. Strengthening the muscles that stabilize the spine can relieve pressure, and muscle growth has been hypothesized to actually stimulate nerve growth. Most important, physical therapy intervenes in the cycle of chronic pain. The body is designed only to respond to acute pain. Muscles contract rigidly around an injury to hold it in place and protect it from further damage. But when pain persists after the original injury has healed, that protection mechanism becomes maladaptive. The contracted muscles clamping down on nerves cause pain, and muscles atrophy from disuse and become another source of pain themselves.
But physical therapy does not appeal to most people. It’s boring, it sometimes hurts, and it usually takes an extremely long time to work. Repeatedly I had observed doctors recommending physical therapy only to discover, when I followed up with the patients, how few people dedicated themselves to it. (Then again, my own initial attempt had been halfhearted. But yours, reader, if you have pain, should not be! Truly, if you take any advice from this book, take this one.)
Chronic pain patients have low rates of response to a placebo because they expect to be in pain. Without belief—and the initial rush of analgesia that a placebo creates—it is difficult to invest in a treatment that requires great effort before yielding any results. Clint used his charisma to make Dani believe that his particular program of physical rehabilitation could work, so she applied herself to it in a way that she had never done with physical therapy, and she began exercising constantly. The rapidity of her improvement initially may have been the endorphins of placebo as well as exercise, but its initial success conferred on Clint a gurulike status and kept her committed to the program when the placebo disappeared. Her faith also enabled him to change her perception of pain, persuading her that the lingering sensation in her back should be reframed as discomfort.
“I’ll get little twinges now and then,” she said matter-of-factly, “but that’s just because my body is used to producing it. I will follow my wellness program like a bible.” We had been talking for several hours at this point, in a café in midtown Manhattan. “I want to move around—we’ve been sitting a long time,” Dani said. “Not because I’m in pain,” she added quickly, “but just because I want to move.” She was excited to go across the street to Bloomingdale’s and shop for her new favorite thing: cute workout outfits.
“I think I got a little too confident,” she told me when I talked to her next, a few years later. When she feels better, she is tempted to slack off on her exercise routine. “I think, I’m better now, I can just live my life.” Then the pain crashes in again. “I need to honor my body by having an ongoing commitment to wellness, the way some cancer patients need to take ongoing medications.”
She found it hard to wean herself entirely from Vicodin; she liked the feeling of knowing that when she was in pain, there was something she could do about it instead of just feeling victimized. But she also found herself periodically slipping back into a dependency she dislikes. She found Klonopin even harder to quit. When, at a doctor’s advice, she simply stopped taking it, she suffered from such severe withdrawal symptoms she ended up in the emergency room, her heart racing, her blood pressure soaring. (Withdrawal from benzodiazepines, such as Klonopin, Ativan, and Valium, can include panic attacks, anxiety, hallucinations, and life-threatening seizures.) She wishes that the doctor who first prescribed Klonopin had informed her that benzodiazepines are more addictive than opiates, and that they impair cognitive abilities and memory.
She is no longer completely convinced that her body is entirely normal, as Clint says. If it was, why did she develop such excruciating, protracted pain from a single injury? “There are people with disk herniations who have no pain,” she said soberly. She puzzled over whether there is something about her body and its genetic makeup that makes her vulnerable to chronic pain. “That’s the missing piece of the puzzle.” But talking to me, she said, made her recall how terrible she used to feel. Now, when she complains of setbacks, it is in the context of something wondrous: “I expect to feel well. And when I don’t, it’s usually my fault because I have not been following my program.”
“That’s great!” I said. “You can be a star patient in my book—one who stopped being a pain patient. I don’t have as many as I would have hoped . . .”
I had certainly seen many improvements over the years. The ones who didn’t take active steps to treat their pain usually worsened over time, although some got worse despite their efforts and some also improved with no particular effort. Just as there is a chronic pain windup, for some patients, there can be a chronic pain wind down over time. But not that many people had been cured.
“Except for you,” she said. “Your book includes the story of how you cured your own pain?”
“Oh, no, no. But my pain improved . . . And I developed a good understanding of pain, which in a way makes it less painful by making it less sinister seeming.”
“But you have an inspirational story?”
“It’s not that kind of book,” I said unhappily.
“You need to focus on curing yourself!”
I had reduced my pain, but I had never fundamentally shifted my narrative. “Build . . . an illness narrative that will make sense of and give value to the experience,” the medical anthropologist Arthur Kleinman enjoins. When I first got the results of my MRIs, I had resolved to take control of my situation. I felt I was suddenly seeing things clearly: the nature of my pain, the nature of my relationship with Kurt. I made a slew of doctor’s appointments, left Kurt, and ordered a special pain diary from the Arthritis Foundation to document my quest for healing. I loved reading pathographies—first-person
accounts of illness. Perhaps I could write one.
The pain diary had an uplifting title printed on its glossy cover, Toward Healthy Living: A Wellness Journal, but I added my own title: Pain’s Progress. When I was eleven, I had been taken with Pilgrim’s Progress, and for a year or so, I had seen my life through its story. Perhaps it could be my model: my pain the burden on the pilgrim’s back as he struggled up the Hill of Difficulty or descended into the Valley of the Shadow of Death. Soon I, too, would arrive at the Delectable Mountains.
But my tale was not turning out like the pilgrim’s. I hated to reread it.
Pain Diary:
I Wish for More Betterness
Toward Healthy Living: A Wellness Journal
You have purchased this journal because you want to take charge of your life . . . Living well with chronic pain and illness begins with action, first by learning about your condition, then by doing something about it . . .
Throughout this book you’ll find wisdom from a variety of people . . . Read their words for what they’re worth, then add your own words of inspiration . . .
“Even comparatively well-adjusted patients can have the idea that their pain physician should be able to eliminate all of their pain and that failure to do so is tantamount to withholding treatment,” the article “Dealing with Difficult Patients in Your Pain Practice” warns physicians. “Some of the primary tasks a pain physician faces as a healer are to foster realistic expectations for treatment success . . .”
The only thing I had wanted from a doctor was a cure. The first seven doctors I brought MRI films to were not inclined to offer this, and neither, I realized ten minutes into the consultation, was the eighth. I had gone to see a rheumatologist (a doctor who specializes in arthritis, autoimmune diseases, musculoskeletal pain disorders, and the like) who had sent me to the Jock, a physiatrist—another specialty I had never heard of, which focuses on rehabilitation. The Jock, as I thought of him (a short man in his early thirties, with an aggressive manner and an alienating buzz cut, whom I dismissively pegged as a former hockey player), was talking to me about the same treatments other doctors had suggested: physical therapy, steroid injections, anti-inflammatories, more physical therapy. I tuned out as he detailed them, because I felt that he was fundamentally talking in the wrong way.
The Pain Chronicles Page 24
