The myth of normal, p.10
The Myth of Normal, page 10
This hard-won perspective raises some unfamiliar, potentially fruitful questions. What if, she writes, “when you got sick, you weren’t a stage [of a disease] but in a process? And cancer, just like having your heart broken, or getting a new job, or going to school, were a teacher? What if, rather than being cast out and defined by some terminal category, you were identified as someone in the middle of a transformation that could deepen your soul, open your heart?”
V’s survival of a near-terminal diagnosis owed much to the heroic efforts and skills of modern medicine, including multiple complex surgeries and chemotherapy. But that’s not all that saved her, as she sees it. V herself generated a powerful complement to these interventions in the way she approached healing: a willingness to experience disease not as a “thing,” an external enemy, but as a process that encompasses all of her life—present, past, and future—and, ultimately, even as a teacher.
Beyond the War Metaphor
We are used to seeing disease as a thing to get rid of or a foe to battle against—as, for example, in the “war on cancer.” (Which “war,” for the record, has been far from victorious.)[1] Someday, we tell ourselves, with enough research, we as a society will “beat” cancer and wipe it out; in the meantime, we maintain a tenaciously defiant attitude, as expressed in the viral hashtag #FuckCancer. Our everyday language gives voice to our combative stance: we hear of a friend or a family member courageously “battling MS” or some other illness; they will either prevail in the struggle or else “succumb.”
It may be that these martial metaphors are so appealing because their force matches our feelings of anger and despair; that does not, however, make them helpful. In a previous work I quoted the Canadian oncologist Karen Gelman, a leading breast cancer specialist, who looks askance at the military depiction of cancer care and research. “What happens in the body is a matter of flow—there is input and there is output,” she said, “and you can’t control every aspect of it. We need to understand that flow, know there are things you can influence and things you can’t. It’s not a battle, it’s a push-pull phenomenon of finding balance and harmony, of kneading the conflicting forces into one dough.”[2] I noticed how closely her use of “flow” mirrors V’s language—one woman speaking from medical expertise, the other from hard-earned, subjectively sourced insight.
Beyond the declarations of war, there is another, even more popular class of misapprehensions that cloud our view of disease: “I have cancer.” “She has MS.” “My nephew has ADD.” Embedded in each phrase is the unexamined assumption that there is an I (or a someone) distinct and independent from the thing called disease, which the “I” has—as in the statement “I have a flat-screen TV.” Here is my life, and over there is the disease that has encroached upon it. Seen this way, disease is something external with its own nature, existing independently of the person in whom it shows up. Given where that perspective has gotten us, it is time to consider a new one.
We have already glimpsed the countless hormonal, immunological, neurological, molecular, intracellular, and epigenetic pathways that make our physiology inseparable from our emotional, psychological, spiritual, and social lives. V’s understanding of trauma and stress as major founts of the process that ultimately came close to killing her is completely aligned with modern science. In a five-decades-long British study that followed nearly ten thousand people from birth until the age of fifty, it was found that early-life adversity—abuse, socioeconomic disadvantage, family strife, for example—greatly increased the risk of cancer before the mid-century mark. Women who experienced two or more such adversities had a doubled risk by midlife.[3]
“These findings suggest that cancer risk may be influenced by exposure to stressful conditions and events early on in life,” wrote the researchers, once more employing the carefully reticent language of “suggest” and “may.” To my clinical sensibilities, concerned as I am with how people fall ill and/or find healing, such results, mirrored over and over in multiple other studies, do not suggest: they scream for attention. The disorganizing impact of stress hormones on the immune system as a risk for cancer is far from a scientific secret. We have also seen how stress and trauma are prime drivers of inflammation, another central gear in the cancer-causing apparatus. Along parallel lines, girls who are sexually and physically abused have far greater risk in adulthood of endometriosis, a painful and often disabling condition that heightens the risk of ovarian cancer and whose origins perplex conventional medical thinking.[4] Considered from the mind-body psychoneuroimmunological perspective, the puzzle becomes rather less puzzling.[*]
To restate a question essential to our theme: What if we saw illness as an imbalance in the entire organism, not just as a manifestation of molecules, cells, or organs invaded or denatured by pathology? What if we applied the findings of Western research and medical science in a systems framework, seeking all the connections and conditions that contribute to illness and health?
Such a reframing would revolutionize how we practice medicine. Rather than treating disease as a solid entity that imposes its ill will on the body, we would be dealing with a process, one that can’t be extricated from our personal histories and the context and culture in which we live. This change in approach has much to recommend it, and not only because it takes interpersonal biology into account. When we cease to view illness as a concrete, autonomous thing with a predetermined trajectory—and when we have the proper help and a willingness to look both within and without—we can start to exercise agency in the matter. After all, if disease is a manifestation of something in our lives rather than merely their cruel disruptor, we have options: we can pursue new understandings, ask new questions, perhaps make new choices. We can take our rightful place as active participants in the process, rather than remain its victims, helpless but for our reliance on medical miracle workers.
Disease itself is both a culmination of what came before and a pointer to how things might unfold in the future. Our emotional dynamics, including our relationship to ourselves, can be among the powerful determinants of that future. An attitude of helplessness and hopelessness at the time of diagnosis, for example, has been shown to exert a marked adverse effect on survival in women with breast cancer even ten years later.[5] Conversely, a decrease in depressive symptoms is associated with longer survival.[6] Even in a study of women requiring biopsies for cervical abnormalities identified on routine Pap smears, those with a dejected view of life before diagnosis were much more likely to find that they received a diagnosis of cancer.[7] In men, the immune system’s capacity to react to prostate cancer was diminished in those with a tendency to suppress anger.[8] Another prostate study found that social support reduced the risk.[9]
Dr. Steven Cole[*] is a prolific researcher whose work has cast bright light on the disease process. “We now know that disease is a long-term process,” he told me, “a physiological process taking place in our bodies, and how we live influences how quickly that’s going to get us at a clinical level . . . The more we understand about disease, the less clear it becomes when you have it and when you don’t.” Within the myth of normal, of course, this kind of nuance is barely comprehensible: you’re either “sick” or you’re “well,” and it should be obvious which camp you’re in. But really, there are no clear dividing lines between illness and health. Nobody all of a sudden “gets” an autoimmune disease, or “gets” cancer—though it may, perhaps, make itself known suddenly and with tremendous impact.
A few years ago, the New Yorker featured an article titled “What’s Wrong with Me?,” a poignant first-person account of yet another “idiopathic” autoimmune condition.[10] The piece was also a perfect depiction of disease as a long-term process rather than a distinct entity. “I got sick,” the author writes with a pained humor, “the way Hemingway says you go broke: ‘gradually and then suddenly.’ One way to tell the story is to say that I was ill for a long time—at least half a dozen years—before any doctor I saw believed I had a disease. Another is to say that it took hold in 2009, the stressful year after my mother died, when a debilitating fatigue overcame me, my lymph nodes ached for months, and a test suggested that I had recently had Epstein-Barr virus.”
The telltale hallmarks of the disease process are there: the prolonged course; the professional befuddlement at the lack of specific markers on physical examination, blood tests, or imaging studies; and the sudden interpersonal stress that finally brings on the full-blown manifestations of illness. Toward the end of the article the writer reports a revealing clue as to the source of her devitalizing malady, one that should have been a signal to her treating physicians: “In May, my endocrinologist speculated, after various M.R.I.s, that I had an ‘idiopathic’ disorder in the hypothalamus which is probably untreatable.”
The clue? We’ve seen it already: the hypothalamus is the hub of the body’s and brain’s stress apparatus, a key modulator of immune activity, and the apex of the autonomic nervous system. It is the transducer into physiological data of our emotional functioning and, therefore, of our interpersonal relationships and of our relationship to ourselves. It translates fear, loss, grief, and stress into responses in our bloodstream, organs, cells, nerves, lymph nodes, messenger chemicals, and molecules throughout the entire organism. Thus, from a broader interpersonal biology point of view, her illness may not be so idiopathic after all, but the understandable outcome of chronic and acute stress. Even if untreatable by present-day medical techniques, it need not be beyond healing, especially if we bring in a wiser, science-based appreciation of the interconnected complexity of the disease process and the bodymind unity.
Returning to cancer, the work of Dr. Cole and colleagues has shown that activation of the body’s stress response can promote tumor growth and spread. It is important to note, as they warned, “that stress per se does not cause cancer; however, clinical and experimental data indicate that stress and other factors such as mood, coping mechanisms, and social support can significantly influence the underlying cellular and molecular processes that facilitate malignant cell growth.”[11]
This raises a key point. Stress cannot “cause” cancer, for the simple reason that our bodies naturally harbor potentially malignant cells at all times. The body contains over thirty-seven trillion cells, in all various stages of development, maturity, and decay. Malignant transformation happens regularly, as an accidental by-product of natural cell division. Under normal conditions the organism’s defenses can eliminate such threats to well-being. We know from autopsies, for example, that many women have breast cancer cells, just as many men have prostate cancer cells, without ever developing the disease of cancer. The question is, What drives the progression of these cells into clinical illness? What keeps the immune system from successfully confronting the internal menace? This is where stress plays its incendiary role: for example, through the release of inflammatory proteins into the circulation—proteins that can instigate damage to DNA and impede DNA repair in the face of malignant transformation. These proteins, called cytokines, can also inactivate genes that would normally suppress tumor growth, enable chemical messengers that support the growth and survival of tumor cells, stimulate the branching of blood vessels that bring nutrients to feed the tumor, and undermine the immune system. Even at the cellular and molecular levels, the generation of ill health is a multifaceted, multistep process.
In 1962 the leading British cancer physician David Smithers published a paper of prophetic force. He explored cancer as process: not a disease of individual cells gone rogue but a manifestation of an imbalanced environment, “merely the terminal [event] in a much longer progressive chain of circumstances with no distinctive starting-point.” Doctors and researchers, he wrote, do not experience cancer’s “essential dynamic quality; they see its static effects, not the process in action.”[12] The activity of cells, Smithers pointed out, “is possible only in relation to their environment, and none of their actions can be explained by laws governing intracellularly initiated events alone.” That prescient assertion has been more than validated by the half century of research since.
“I now have a much more complex view of causation,” Steve Cole told me. “If you get a disease, a whole series of things had to have gone wrong. Some of that may be related to your genes; some of that may be related to pathogen exposure. Some of it is related to hard lives—the way that can wreak wear and tear on the body and on what would otherwise be resilient tissues. It’s better to think of it as a multistep causation . . . One of the things many diseases have in common is inflammation, acting as kind of a fertilizer for the development of illness. We’ve discovered that when people feel threatened, insecure—especially over an extended period of time—our bodies are programmed to turn on inflammatory genes.”
A Physician Heals Herself
Threatened and insecure over an extended period of time is precisely how the obstetrician-gynecologist Lissa Rankin felt since childhood, an emotional state her medical training only exacerbated. Her book The Anatomy of a Calling begins with a nightmarish recounting of how she, as a medical resident, had to rush all night from one delivery room to another, dealing with one difficult delivery in the wake of another, supporting parents after the death of four babies, and all the while being berated by her superiors to suppress her own grief, even in the privacy of the women’s changing room. “Doctors,” she writes, “become masters at stuffing their emotions. We can’t cry when we’re grieving or when someone has hurt our feelings, or when we are sad.” I recently spoke with the California-based physician. “In medical school,” she told me, “I was being sexually harassed by my surgery professors all the time. All the time. I just had to tolerate it . . . I never went to the medical school director, I never told anybody, or asked for protection, because that was part of my wounding: I wasn’t allowed to ask for help, to be ‘needy,’ to complain.”
When she was twenty-seven, Dr. Rankin was admitted to the coronary care unit at her hospital for an episode of distressingly rapid heartbeat that did not respond to the usual noninvasive measures. After receiving electrical shock treatment to restore her normal heart rate, she was sent directly back to work. By age thirty-three, she was taking multiple medications for a number of conditions, including three drugs for high blood pressure and palpitations, antihistamines, and a steroid—which, again, is a stress hormone—and weekly injections for allergies, which, she was told, she’d have to stay on for the rest of her life. She was also treated for a cervical abnormality, a precancerous state that reappeared soon after the procedure. All the while—and this will sound familiar—no physician asked her what stresses might be weighing on her, promoting immune problems, and potentiating malignancy.
Today Dr. Rankin is fully healthy and taking no drugs at all. In her case, healing owed nothing to conventional medical treatment and everything to the personal transformation she was guided to undertake—a journey she began when, at age thirty-five, she was nearly suicidal. “Within six months of quitting my job I was off all my medications,” she reports. She is now a mother, a healer, a seminar leader, and the author of several books. Her key insight was to recognize her entire life as the ground for her several illnesses, physical and mental; not separate entities but dynamic processes expressing her interactions with her world. “I had been a stereotypical good girl, overachiever, top of my class, always pushing to develop my talent and intellect, not to satisfy me but to be accepted by others,” she told me. That relentless pressure, she learned, manifested in her medical conditions. She had to let it go.
As Lissa Rankin realized, much good can come from an open-minded engagement with the process that disease represents. It may not be the guest we ever desire to see, but a modicum of hospitality—welcoming the unwelcome, so to speak—costs us nothing. It may even lead to an opportunity to find out why this particular visitor has come to call, and what it might tell us about our lives.
Chapter 7
A Traumatic Tension: Attachment vs. Authenticity
Most of our tensions and frustrations stem from compulsive needs to act the role of someone we are not.
—János (Hans) Selye, M.D., The Stress of Life
To hear Anita Moorjani tell it, the disease that nearly killed her was no random misfortune. “The person I was before I got cancer,” the bestselling author told me, “was afraid of disappointing other people. I was a pleaser. I completely lost myself in satisfying other people, I became so drained. I was someone who could not say no; I was a rescuer, and I would be the one who was there for everyone. I didn’t even learn that it’s okay to be me when I had cancer. It took being in a coma to learn that.” Now a vibrant sixty-year-old, Moorjani is convinced that chronic stress induced by the compulsive suppression of her own needs was one of the roots of her metastatic lymphoma, thought to be terminal when she was diagnosed at age forty-three. “My personality was such that I needed something as drastic as cancer to give me reason to take care of myself.”
Many of us have heard such sentiments: the notion of “finding the gold” in catastrophe is not at all unfamiliar, nor limited to the sphere of health crises. But the idea that features of our personality may contribute to the onset of pathology is anathema to many. In her still-influential 1978 essay “Illness as Metaphor,” the late filmmaker, activist, and brilliant woman of letters Susan Sontag—then a forty-five-year-old cancer survivor—flatly and forcefully rejected the possibility that ill health might signify anything beyond bodily calamity. “Theories that diseases are caused by mental states . . . are always an index of how much is not understood about the physical terrain of a disease,” she wrote.[1] To assert that emotions contribute to disease was, for her, to promote “punitive or sentimental fantasies,” to traffic in “lurid metaphors” and their “trappings.” She found this view especially distasteful because she perceived it as a way of blaming the patient. “I decided that I was not going to be culpabilized.”[2]
