The Breakthrough
When You're Chronically Ill, How Do You Live?
By Marian Sandmaier

The Psychotherapy  Networker
May/June 2000

 

On the day I understood that something had to change, I was sitting in a newspaper editorial meeting, feeling the slight, probing pressure behind my right eye that signaled the onset of a migraine headache. Stay cool, I firmly told myself. You can handle this.

"Handling this" meant doing what I had been doing for the past 18 years or so of persistent migraines—dosing myself with drugs and resolutely pretending to be fine. Politely, I excused myself and made my way to the women's room, where I opened my purse and extracted a syringe from a flowered makeup case. With a practiced hand, I loaded the cartridge with a cylinder of migraine medication, took a deep breath, and plunged the needle into my upper leg. The shot, as always, made me gasp with pain but was mercifully short; ten seconds later, I was slapping on a Band-Aid to stop the bleeding, stuffing all the equipment back into my makeup bag and hustling back into the conference room—smiling.

Just your basic bathroom break, my expression conveyed as I met the questioning looks of the newspaper's Sunday magazine staff, from whom I was trying to wrest a freelance assignment. No way was I going to let on that I was in the midst of an attack—fear of being labeled a neurasthenic, crumple-under-pressure female had long kept me silent--and I wasn't about to out myself in the workplace. I'm fine.

Except that this time, I wasn't. As sometimes happened, Imitrex, the highly-touted migraine "wonder drug" that was my only line of defense against these headaches, simply didn't work. As talk of story angles and deadlines swirled around me, I felt the pain burrowing deeper into my skull while I simultaneously grew woozier by the minute from the medication. When I realized there was an excellent chance I might actually throw up, I pasted my smile back on, stood up and pointed to my watch. "I forgot—another appointment!" I announced to the semi-circle of bemused editors. As I made my way out the door, I even managed a jaunty wave.

Once outside, I dove back into the women's room and leaned my forehead against a stall. I felt utterly defeated—and scared. In the course of my long migraine career I had ricocheted from doctor to doctor, successively collecting prescriptions for ergotamine, barbiturates, prescription anti-inflammatories, Tylenol with codeine, Elavil, and now Imitrex, the gold standard of migraine meds, which worked better than the others but not reliably, and never without day-long, disabling side effects. I had also presented my desperation to various "alternative" healers, including two acupuncturists, a massage therapist and an herbalist. Once, I traveled from my Philadelphia-area home to Burlington, Vermont, where a woman who called herself a "resonant kinesiologist" coached me to perform a set of complicated vocalizations that were supposed to ward off my headaches.

Yet over the last few years, I was losing more work days, canceling more plans with family and friends, and spending more housebound days than ever waiting out the pain as well as a kind of pervasive, toxic enervation that seemed to tunnel into my very bones and tissue. These full-body assaults used to descend 3 or 4 times a month; now I was getting up to 10 migraines monthly. The last time I had seen my internist, hoping for some new treatment breakthrough that had somehow eluded my marathon research sessions on the Internet, she had reviewed my chart and simply shook her head. "You should have aged out of them by now," she said finally.

Leaning against the cold metal door of the bathroom stall and recalling the helpless shrug of my doctor's shoulders, I admitted to myself, for the first time, how terrified I felt. I honestly believed that all of the professionals I had relied on thus far were well-intentioned, conscientious people who had done their best for me. But if the best these experts had to offer had brought me to this point, where I was fleeing business meetings and hiding out in public bathrooms, then I had truly reached the end of the line. I felt hopeless—and utterly alone.

Though, in a certain, disturbing sense, I wasn't alone at all. I have a colleague whose low-back pain is so searing that the only way she can get relief is to take enough Vicodin to knock her nearly unconscious; in her worst moments, she calms herself with the thought: "I can always kill myself." A friend from college battles Crohn's disease, a severe and progressive intestinal disorder, and feels at age 49 like "a wrecked old man." And a woman in my writing group, the mother of three young girls, lives with the memory of Stage II breast cancer and often feels unable to embrace whatever portion of life is left to her, so terrorized is she by the question that bores daily into her skull: Will it come back?

My personal tribe of co-sufferers is hardly unique. Virtually anyone can gaze around his or her circle of family, friends and colleagues and identify several who struggle with illness or one sort or another; many of us must include ourselves in the count. According to the National Center for Health Statistics, more than 50 million people in the United States cope with a chronic illness severe enough to disrupt their usual activities and/or cause persistent pain. The sheer range of afflictions is staggering: arthritis, diabetes, back problems, headaches, disabling injuries, cardiovascular diseases, a raft of chronic lung disorders, a dozen major gastrointestinal ailments, no fewer than 80 autoimmune diseases. Recently, cancer and HIV have been added to the roster of chronic illnesses, as recent medical advances have rendered them no longer quickly fatal. All told, nearly a quarter of middle-aged adults are disabled to some degree by a chronic condition; among elderly people, that figure climbs to over 40 percent.

It is a good bet, then, that nearly every therapist works with clients who inhabit "the night-side of life," as writer Susan Sontag calls the harrowing, lived experience of chronic illness. Many of these clients have discovered that drugs and surgery are partial remedies, at best, and have been advised by their doctors that their only option, now, is to somehow learn to "live with" often severe pain or disability. Others, with life-threatening illness, confront the shadow of death itself. The consequent tangle of fear, despair, and sheer bodily suffering that many ill people bring with them into the therapy room, can, in turn, leave many clinicians feeling frustratingly out of their depth.

"You get a client who's been to 45 doctors and nothing has helped and he's mad and discouraged and desperate for you to help him," says John Rolland, co-director of the Center for Family Health at the University of Chicago and author of Families, Illness and Disability. "So there's an intimidation factor. You tend to retreat into what's most familiar, such as ‘let's talk about your family of origin' or ‘let's do brief solution-focused therapy' and at the end of it all your client is still in terrible pain. It's very easy to feel powerless."

Illness as Opportunity?

Yet far from the mainstream of psychotherapy, a new movement is quietly emerging that may offer therapists a way to equip their ill clients with a greater sense of agency and optimism—and perhaps supply clinicians themselves with a stronger sense of competence in this arena. Across the country, a small cadre of alternative medicine institutes is developing—and training therapists to lead--a distinctive model of health education and emotional support known as "mind-body-spirit" groups. There is nothing new  about illness support groups per se: they have long been staples of church basements, community centers and therapy offices across the land. Most existing groups, however, focus largely on sharing illness-related experiences, which may comfort some but leave others feeling more engulfed than ever by their medical woes. What is purportedly new about mind-body-spirit groups is that they offer themselves, quite explicitly, as a potent counter-punch to the learned helplessness that chronic illness often breeds. This newer generation of support group merges mutual sharing with the practice of simple self-care approaches—meditation, imagery, movement, and so on—that are meant to activate one's own bodily, emotional and spiritual resources for healing.

The organizations that are advancing this model constitute a veritable Who's Who of the alternative medicine field, including the Harvard-based Mind/Body Medical Institute; the University of Massachusetts' Center for Mindfulness in Medicine, Health Care and Society; the Washington, D.C.-based Center for Mind-Body Medicine; and the Commonweal Cancer Help Program in Bolinas, California. But impressive credentials aside, do they really offer anything new? After all, many therapists are already teaching various "alternative" processes to help their chronically ill and generally stressed-out clients, especially the many varieties of relaxation practices. Is a group format just a more efficient way to transmit these self-care skills? Or is there more to it?

"At bottom, we're supporting a process of self-discovery," said psychiatrist James Gordon, founder and director of the Center for Mind-Body Medicine (CMBM), when I called him with my questions. These new groups not only help people better manage their medical symptoms, he told me, but also operate from the core assumption that "illness can be a powerful opportunity for personal growth." When I pressed for the whys and wherefores, Gordon told me that CMBM would shortly be putting on its annual training program for therapists and other health care professionals who want to learn to lead these groups. "Come and experience it," he invited.

I hesitated. "Illness as opportunity"—I had heard that phrase before, and it had always made my lip curl. It seemed both romantic and deeply disrespectful to propose to people in pain that their suffering was, somehow or other, their big chance for some kind of spiritual metamorphosis. In my experience, migraines were hell; end of story. Yet I couldn't deny that the way I had approached my own illness thus far—as an alien invasion to be vanquished by experts--had left me feeling dispirited and impotent. I knew plenty of others with long-term ailments who had hit similar walls. Could these multi-dimensional groups be a way for therapists to help people like us

burrow through this wall of defeat that surrounds chronic illness, and find something more hopeful and healing on the other side? I would not get my hopes up. But I would give this "mind-body-spirit" concept a shot.

"The heart of this program is learning on yourself." On a warm November morning on South Carolina's Hilton Head Island, James Gordon is notifying a roomful of 115 therapists, physicians, and other health care practitioners that they can toss out any expectations that the training program they are about to begin will be a lecture-heavy, notes-taking affair. Not that this curriculum, CMBM's Professional Training Program in Mind-Body-Spirit Medicine, will neglect participants' left brains altogether. Gordon, 58, a Harvard-trained psychiatrist, Georgetown University Medical School professor and former researcher for the National Institute of Mental Health, is too much the scholar for that. For a couple of hours each day, we are told, we will collectively convene in this large conference hall, where he and other CMBM staffers will teach us something of the science and philosophy of mind-body medicine, as well as introduce us to a smorgasbord of experiential techniques.

"It's not just a bunch of woo-woo ideas anymore," Gordon informs us. "The research is in. Emotional stress is known to be a contributing or exacerbating factor in at least 80 percent of chronic illnesses. And we're finding out that a whole range of mind-body techniques—very simple, safe practices--can reduce that stress and actually improve the course of disease." He pauses to let the implications sink in. "This means that each one of us has enormous power to affect our own health. Yet we're taught we have none."

Gordon makes this last assertion with genuine emotion; it's obvious that he is outraged by the conventional medical system's claim to exclusivity in the realm of healing. He respects the power and utility of Western biomedicine—"If you've been hit by a truck, herbs aren't going to do the job"--but he believes that Big Medicine's tentacles have extended entirely too far, rendering patients dangerously passive and vulnerable. A major thrust of this training program, he tells us, will be to teach therapists and other health care practitioners to "give people back their own healing power."

I wince at this last statement: My own medical odyssey has left me deeply skeptical of any sort of health promise. But Gordon, a tall, loose-limbed presence in a purple shirt, khakis and running shoes, now begins to speak more softly. "The soul of your work here," he tells us, "is working on yourself in your own small group. This is where the most important learning happens." He informs us that for a big chunk of each day--two to four hours--we will have the chance to discover, in our guts, something about the frayed links between our own bodies and emotions, the power of mind-body-spirit approaches to begin to knit us back together, and the surprising shifts that can take place when one does this work of self-discovery in the company of other people. Via such personal immersion, he says, we will learn how to lead groups that help people to truly encounter themselves. "For this week, you're both experimenter and experimental subject," he quips, grinning. "Enjoy."

Going Deeper

At 2 p.m. that day, I show up at the appointed room for my first group session. My designated group-mates, four other women and four men, include two therapists, a nurse, a nurse-practitioner, a psychiatrist, three other physicians and me, plus our facilitator, a gentle, dark-haired psychotherapist named Nancy Harazduk. Our meeting place is actually the pastel-hued living room of her hotel suite, and for a few minutes we mill around the space awkwardly, arranging chairs in a circle and making jokey small talk. Then Nancy quiets us; introductions begin. So who are we, behind these smiley, I'm-alright-Jack personas?

People start out reciting the usual professional reasons they come to training programs—to broaden their skill base, to re-energize ho-hum practices. "Any personal goals?" nudges Nancy. The group falls silent. Finally, Peter, a 48-year-old anesthesiologist from San Diego, ventures that to his friends and colleagues, his life looks enviable—the American Dream incarnate. "I have the big house, the two boats and the 10-grand vacations," he says. "But most days I work 12 hours, come home, yell at my kids and surf the Web to unwind until I fall into bed." He makes an effort to smile. "It's a money trap. And I have psoriasis."

The ice has been decisively broken. As we continue around the circle, people begin to talk about hating their overweight and out-of-shape bodies, stoically coping with pain of one sort or another, and generally longing to restore some balance to harried, out-of-joint lives. Three are struggling with marital problems; two are at difficult career crossroads. I tell people I'm writing an article on the training program and also deal with migraines. I notice that each of us—including me—takes pains to let the others know how professionally successful we are. We may be limping, we seem to say, but we require no undue sympathy. We scatter titles and accomplishments like birdseed.

I notice, too, that as each of us sketches out our lives, Nancy listens closely, but speaks relatively little. This surprises me: Having done a stint of group therapy in my twenties, I remembered my therapist taking a far more loquacious, directive role. But Nancy tells us, now, that her presence is low-key by design: "Our intention here is to allow people to discover for themselves what they need to heal." To promote such self-directed work, she explains that the facilitator avoids interpretation or guidance of any sort; instead, his or her primary role is to ensure that the group is a safe place for people to unmask and unfold. Nancy then takes us through a short list of "safety rules:" nobody offers judgments or advice, nobody interrupts, everybody agrees to maintain confidentiality. Later, she will acknowledge that for therapists in particular, this humbler facilitative role may require considerable self-control. "I often have to bite my tongue to avoid doing therapy," she says. "There can be a great desire to push people, especially when you feel you have a great insight."

But we've talked enough for now, and Nancy is moving us into our first exercise--making crayon drawings of selected aspects of our lives, including the biggest problem we currently struggle with. This particular tool, she will explain later, is designed to get a nascent group of tense, wary strangers quickly out of their heads and into their felt experience. "Don't think, just draw as fast as you can," she instructs.

Three minutes later I am staring at my "biggest problem" drawing, which depicts a tightrope stretched across the length of the page, with a fragile-looking, grim-faced figure barely balanced upon it. Below the tightrope, a huge, out-of-control fire rages. I am shaken. I know I often feel pressure to do everything right—classic perfectionism stuff--and that I am quick to castigate myself when I make mistakes. Mostly, I have viewed this element of my personality as unfortunate and annoying, but ultimately tolerable. But this picture shows something very different—it is full of raw terror. Nancy is calling us back to the circle now for a closing ritual, but I am still stunned; I look down again at my drawing. Get it right or tumble into hell? Is this what I'm calling my life?

I am still haunted by the picture when we return to our small group the next morning. I want to talk about it—first thing—but Nancy has other plans. "From now on, we're going to start our time together with a brief meditation," she tells us, picking up a small pair of Buddhist tingsha bells from the coffee table in front of us. Her instructions are simple: We are to merely focus on our breath, notice and accept thoughts as they come, gently let them go, and return to our breath. The idea, she tells us, is to just experience ourselves in each moment, without judgment. This process, in turn, "will help us be more present in the group. Because that's all that's required of us for the next two hours—to just be who we are, moment to moment."

I like the sound of this. Not having to accomplish anything or justify myself. Just be. When Nancy softly rings the bells to signal the beginning of our meditation, I close my eyes and try to follow her instructions. I have meditated before but nearly always solo; doing it with others feels, at first, both strange and inexplicably comforting. But before long I notice a prickle of anxiety in my gut; it scares me and I squelch it. I struggle, and fail, to regain my sense of calm. Then I hear the soft ringing of bells; impossibly, 10 minutes have passed.

As I open my eyes, Nancy is already preparing the second ritual that from now on will mark the opening of each group meeting—the lighting of a candle. "This flame symbolizes presence," she explains, setting the flickering candle on the coffee table. "When you begin to wander off, the light will remind you to bring yourself back here, to us." I feel impatient: Can't we just get on with the session without all this Be-Here-Now prelude? But now, at last, Nancy is asking us about our drawings. What was it like for us to literally picture our lives?

Peter, the anesthesiologist who had spoken earlier of his life as a money trap, goes first. He holds up his "biggest problem" picture, a self-portrait of a man with a hugely distended belly, hair standing on end, and psoriasis patches covering his entire body. The man stands in a cage. Peter tells us, then, that he works all day long in a small, low-ceilinged operating room, often with only 10 minutes between surgeries. "During my breaks, I run out to the snack machines and stuff some junk food into my mouth, then race back to put the next patient under." He smiles wanly. "I hate my life."

Bruce, a psychiatrist who is separated from his wife and reported yesterday that his newly single life was "going great," holds up a picture of a face streaming with tears. Next to the face is a hard-edged, ice-blue barrier that blocks a stream of yellow sunlight. "I want warmth in my life," he tells us now. "But when I try to imagine dismantling the barriers, I get scared."

I show my drawing and say that I think the hellfire represents my acute fear of failure, especially regarding work. I know what everybody is thinking—ergo, migraines! Instantly, I begin to defend myself, assuring the group that I am perfectly well aware of the stress-disease connection but that for me, it's simply not the main issue. My migraines, I inform them, are also a matter of bad-luck bloodlines, passed down from my grandmother to my mother to my sister and me, which means I get headaches on semi-serene days as well as on teeth-gnashing ones. Yet even as I press my case for genetic inevitability, I feel the insistent presence of the drawing in my hand. A woman on a tightrope--what could it mean? But then again, what did it matter? "Even if I've put myself on this tightrope," I conclude in a brook-no-disagreement tone, "I have no clue how to get off it."

This process of unveiling our self-portraits has noticeably loosened up the energy in our circle. We begin to talk about control--the lengths we go to maintain it, the terror that grips us when we feel it slipping away. Then somebody mentions love. "I spend so much energy trying to get my wife to love me just the way I want be loved," muses Michael, a Detroit-area family physician. Annie, a spirited, sixtyish therapist from rural North Carolina, tells us she is dating a "special man"—and is beginning to care deeply for him. "Wanting somebody to want you," she whispers, "is scarier ‘n hell."

I am drinking in these revelations but I am also feeling edgy, distracted, noticing that the tingle of anxiety I felt earlier has grown to a nagging, tearing sensation in my stomach. I remember, now, that I've scheduled an interview later in the day and am feeling miserably unprepared. And so when our group disbands for the afternoon and people gather in little knots, continuing conversations as they stroll to the next session, I bolt past them to an isolated bench near some tennis courts. There I scribble notes and queries for my upcoming interview, certain that I have left out some central, critical question. 

Shaking Loose

By midway through the week we "students" have sampled a prodigious assortment of mind-body techniques, some taught by Nancy in our small-group sessions, others demonstrated--with great gusto and physicality--by Gordon in the main lecture hall. In addition to sitting meditation, clinicians have experienced the ancient Indonesian practice of whole-body shaking, two kinds of guided imagery, thermal biofeedback using a tiny hand-held monitor, self-hypnosis, an outdoor walking meditation, and an activity that Gordon calls "joints and glands," a sequence of intensely vigorous self-manipulations designed to both raise energy and induce relaxation. Later in the week, practitioners will learn how to use music to facilitate healing, sample a progressive relaxation process known as the body scan, and try out a Tibetan ritual called "chaotic breathing" that is meant to both reduce tension and spur the release of unconscious emotional blocks.

Gordon and his staff don't just casually dump this melange of tools into therapists' laps. Instead, trainees are taught a highly-structured format for a 12-week group program that schedules time during each session for an around-the-circle "check in," the teaching of a particular mind-body skill, the in-group practice of that skill, then a verbal processing of the experience by each participant. If anything, the format sounds a bit buttoned-up and formulaic, but Gordon encourages clinicians to deviate from the blueprint whenever they feel, intuitively, that their group would profit from it. He takes a similar, do-what-works stance toward the use of the mind-body tools themselves. "We're asking you to try out a whole bunch here so you'll find out which ones resonate for you," he tells us during a mid-week lecture. "The ones you believe in are the ones you'll teach your own groups." Gordon pauses, grinning. "Self-experimentation—it's one of the nice things that distinguishes mind-body work from Thorazine."

At first, I enter into these experiences somewhat shyly and self-consciously, especially the more physical ones. You want us to do what? I think while watching Gordon go red-faced and sweaty as he violently jerks and jounces in place, eyes shut, during our lesson in whole-body shaking. When he invites us to gyrate along with him, I execute a few decorous jiggles and hope the exercise will be over soon, especially since I am feeling the ominous prickle of a developing migraine. But when Gordon yells out that this will go on for a full five minutes, I begin to surrender to the tribal-sounding music and the sounds of bodies shimmying and vibrating around me. Before long I find myself bending low to the ground and swaying to the low, insistent drumbeat, twisting my torso and bobbing my head like some possessed rag doll.

When we finally stop I notice, to my astonishment, that my headache hasn't worsened but instead has softened, ever so slightly. Later in the week, as I meditate outdoors at a picnic table, another migraine dissolves altogether. It returns a few hours later, but the experience of achieving any measure of pain relief entirely on my own, without my usual arsenal of pills and hypodermic needles, feels both thrilling and not quite real.

But Gordon wants to make sure we understand the deepest potential of the alternative tools we have come here to learn. "These practices aren't just about pain control and shoring up the immune system," he informs us during one morning lecture. "What's most important is that each of them aims at awareness—a state of relaxed, here-and-now focus." I think of the shaking exercise, how I felt, in those moments, as happy and loose as an 8-year-old at recess. The idea is to "live these approaches," Gordon urges us. "Wherever you are at a given moment, really be there. Don't miss out on your life." He looks around the room, as though trying to gauge whether we've actually heard him. "What we're really trying to teach here—and what we hope you'll ultimately teach your own groups—is the wonder of waking up."

I am beginning, already, to witness such stirrings in some of my group-mates. On Thursday morning, Peter arrives at our session relaxed and smiling, if a bit sleepy-eyed. During check-in, he tells us that after an angst-filled night, he has decided to give away a work shift—"screw the dough!"--which will allow him to arrive home most days by 4 p.m., when his kids get home from school. "I've always told myself, ‘things will be better when I retire,'" he tells us, tears welling in his eyes. "I know now I can't wait that long." Meanwhile, Annie tells us that a guided imagery we did the preceding day has helped her to become aware that she wants, ultimately, to pare down her traditional therapy practice in order to develop various mind-body offerings—workshops, courses, groups--for people in her rural community. "I'm single and over 60 and scared to death of being penniless," she tells us. "But I know I need to make a change." 

The following morning in group, as we prepare for the opening meditation, Nancy urges us to carefully attend to our feelings. All of them.  "Everything you feel--even the most difficult stuff--is a part of you," she reminds us. As I close my eyes, I become conscious, almost instantly, of a sick, tight feeling in the pit of my stomach. But instead of reflexively blocking it out, as I had been doing up to now, this time I make an effort to stay with the discomfort. As I breathe into it, I feel the tightness in my gut gradually rise to my chest and I become aware, all at once, of a deep, piercing sense of loneliness. I continue to breathe, feeling wave after wave of sadness wash over me. I feel lost and small.

Now Nancy is ringing the tingsha bells, signaling the end of the meditation. Opening my eyes, I reach for a small, iridescent-purple ceramic heart that is lying on the coffee table. Earlier in the week, Nancy had told us that this heart symbolized the sacred in each of us; anyone who picked it up alerted the others that he or she was ready to speak from a deep, vulnerable place. "It's so hard…" I begin, then stop, realizing suddenly how close I am to crying. "It's so hard," I repeat, "to be here with all of you, when…" My voice wobbles. "When I'm spending all my time taking notes and prepping for interviews and worrying about angles for this—this assignment  I've got."  

I think, then, of my tightrope-over-hell drawing, how endlessly strung out I am about doing everything right, especially the work stuff. And I tell the group, now, that I'm getting how this perfectionism business doesn't just keep me perpetually on edge and, OK, maybe it does contribute to my migraines, but it also keeps me apart from people—not just here, this week, but everywhere, all the time. "Work eats up my life," I hear myself saying. "It's not what I want." And now I really am crying.

I wait for somebody to say something, help me out, give me some clue about how to get past this miserable tangle of feelings. But the room is perfectly still. As I look up and around the circle, I see everyone gazing at me gently, attentively. I look back at them, taking a couple of long, shaky breaths. Peter is nodding with a kind of been-there, sober sympathy. Michael leans forward on his chair, listening intently. Nancy, meanwhile, radiates something that feels in that moment like a kind of embracing, persevering presence—as though she would be truly happy to sit with me like this forever, or nearly so, until I am ready to do the work I need to do.

For a split second I wonder how I should try to explain my eruption to the group—put it in some kind of context, assure them I'm not usually like this--when my eye catches the flickering candle flame on the coffee table. Stay in the moment. "I hope," I say now, "that before this week is done, I get to connect with each of you." I look around the room again, at the circle of soft, open faces. "Yeah," I whisper. "That's what I want." And as I return the iridescent heart to the coffee table, my eyes fill up again. 

As someone else reaches for the heart, Anita, a usually soft-spoken nurse from Ontario, abruptly stands up. "I've just got to do this," she announces, whereupon she crosses the room to where I am sitting and envelops me in a long, tender hug. I feel as though I am parachuting to the ground. And when the session ends, I walk to the next event of the day with Victoria, a rosy-cheeked, plain-spoken nurse practitioner in our group. As we stroll past a grove of massive live oaks, she hooks her arm around my waist. "Here's what I think, Marian," she tells me with an affectionate smile. "You can figure out your article anytime. But you can only be with us now." 

I carry her words with me that evening to my mother, who lives on this island and with whom I've been staying all week. Until now, I have separated myself from her each evening after dinner, laboring over my notebooks at her dining room table, planning, recording, preparing. But after supper tonight, we put on her favorite Brenda Lee CD and settle in together in the den, trading stories about her childhood and mine. Mom is curious about the program I am so immersed in, so I teach her a biofeedback exercise; we giggle over our bungled attempts to work my hand-held monitor. And I go to bed that night thinking of what Gordon had said earlier about the truest purpose of everything going on this week, the shaking and the drawing and the meditating and the quiet, inestimable power of nine people around a circle, each ready to speak and listen with an open heart. How each element, illuminated and deepened by each of the others, is finally about waking up.

Can Support Groups Heal?

Mind, body, soul. For many of the therapists I encountered at the CMBM training program, there was something profoundly appealing about practices that addressed these interlaced elements of self. As they committed their own bodies and spirits to this work over the course of a week, many clinicians spoke of feeling the difference in their own unclenching muscles and quieter minds, or in a newfound ability to walk from hotel lobby to parking lot and see—truly see—the wonder of a camelia bush in bloom. For these therapists and for the thousands of other clinicians already drawn to holistic approaches, the concept of "mind-body-spirit" groups may resonate on both intellectual and deeply personal, visceral levels.

Yet for many other therapists, injecting so-called "alternative" approaches into group work may seem like an unnecessary, even woolly-brained frill. A long and respected tradition of group therapy, after all, relies entirely on the expression of thoughts and feelings to help people overcome isolation and engender healing. And numerous studies show that emotional support—the raison d'etre of traditional groups—is vitally important to a person's ability to adjust to illness. Before clinicians invest time and energy learning a beefed-up support group model, do we have any hard evidence that mind-body-spirit groups actually help people with chronic illnesses more than their conventional, talk-centered counterparts?

To try to get some clarity on this question, I turned first to the near-legendary "survival studies" that suggest a link between support group participation and lengthened lives for people with cancer. In 1989, Stanford University psychiatrist David Spiegel discovered that women with advanced breast cancer who participated in a weekly support group program survived twice as long as women assigned to a control group. Since then, at least two other investigations—a UCLA study tracking people with malignant melanoma, and a University of Texas study following patients with prostate and breast cancer—also have found striking survival benefits for support group users. Over the past decade, these studies have been repeatedly cited as evidence that support groups—presumably the traditional, all-talk variety—are capable of prolonging lives.

But when I looked closely at the kinds of support groups used in these studies, I was struck by the discovery that they were not, in fact, "all-talk" groups. Instead, each of these support groups made regular use of mind-body-spirit practices. Spiegel, for example, taught a process of self-hypnosis to the women in his groups, primarily to help them manage pain and anxiety. In the malignant melanoma study led by UCLA psychiatrist Fawsy I. Fawsy, group participants practiced a battery of relaxation techniques. Meanwhile, in the University of Texas study, cancer patients learned a full-course menu of "alternative" practices, much like those we learned in the CMBM training program. Does this commonality across studies suggest that support groups with a "mind-body-spirit" thrust are more likely to extend lives?

It is a persuasive hypothesis, especially since a number of studies suggest that meditation, imagery, and other alternative approaches may bolster the immune system. The frustrating reality, however, is that thus far nobody knows exactly why support groups appear to improve survival. "Virtually all of these studies are ‘kitchen-sink' interventions that include multiple elements—emotional support, psychoeducation, meditation, and so on," points out Barbara Andersen, an Ohio State University psychologist who is currently studying illness support groups. "The trouble is that none of them was designed to identify which of these factors--alone or in combination--actually contributes to survival." In fact, nobody yet knows whether support group participation can extend life at all. Recently, the American Association for the Advancement of Science publicly criticized both the Spiegel and Fawsy studies for significant methodological flaws. The good news is that several better-designed support group studies are now in the works, with preliminary results expected within the next year or two.

In the meantime, clinicians can do clients an immense service by tempering the widespread popular belief in the disease-zapping powers of support groups, says Elizabeth Tyson, a Chelmsford, Massachusetts therapist who specializes in issues of life-threatening illness. She tells of recently starting a support group for breast cancer patients, wherein one woman immediately announced to the others: "The longer we stay in this group, the longer we'll live!" Over and over again, Tyson has watched such desperately-held hopes crash into guilt and despair when disease symptoms returned. "For some people, maybe the group experience does literally trickle down to their cells and slows down disease—who knows?" Tyson says. "But whether or not participation in a group is life-saving, I know that it can be profoundly life-enhancing."

And it is in this subtler, more internal realm—the capacity for people to live well with illness—that "mind-body-spirit" groups may have a distinct edge over traditional support groups. Researchers at the California Pacific Medical Center (CPMC) in San Francisco are currently tracking 160 women with breast cancer to find out whether these multi-dimensional groups offer any measurable "quality-of-life" advantages over standard-issue, all-talk groups. Results on the first 100 women to complete the program show that after 12 sessions, participants in both types of therapist-led groups felt less anxious and depressed. But women in the mind-body-spirit groups improved, in addition, on measures of spiritual growth and something called "embracing life's fullness," which research co-director Elisabeth Targ describes as "the capacity to directly experience the richness of life--to be more fully present and accepting of what's in the moment."

Targ, a psychiatrist who directs the Complementary Medicine Research Institute at CPMC, acknowledges that in the face of serious illness, "being in the present can be excruciatingly difficult at times. There are plenty of tears and anger." But when participants in her groups make an effort to stay in the moment, she says "they often find that their grief or rage can be in service of something—letting go of armor, connecting to themselves and to others in the group, and ultimately feeling a kind of partnership with the universe--no matter what their physical condition. In our mind-body-spirit groups, people got a taste of that."

If these alternative groups face a developmental challenge, it may be in reaching out beyond individuals to offer whole families the benefits of the "mind-body-spirit" experience. In the CMBM program, we learned nothing about the impact of illness on family members or ways to include them in support groups, although Gordon said in a later interview that he sometimes teaches mind-body skills to families in his private practice. "Family members are the people who typically get left out of illness," points out Susan McDaniel, professor of psychiatry and family medicine at the University of Rochester School of Medicine and co-author of Medical Family Therapy. When family members are shut out of support groups, she says, "it is a very hazardous exclusion because illness already tends to create so much misunderstanding and distance in a family. You may end up not dealing with critical issues with the people who matter to you most."

Very likely, partners and other relatives of people coping with illness would benefit from any type of well-run support group. But the particular emphasis on stress reduction provided by mind-body-spirit groups may make them an especially good match for family members' needs. A 1997 survey by the National Family Caregivers Association reports that when people begin caring for an ill family member, their own susceptibility to back pain, stomach disorders, depression, insomnia, colds and other stress-related ailments shoots up dramatically. Says medical family therapist John Rolland: "The natural next step with mind-body approaches is to apply them systemically. The impact of these practices can only deepen if you get the whole family on board."

Still, groups for ill people exclusively have valid uses. Research psychologist Vicki Helgeson of Carnegie Mellon University has found, for example, that peer-only groups can provide a kind of "emotional triage" for ill people with little or no family support. McDaniel, meanwhile, believes it can be helpful to offer both peer and family groups in a kind of graduated fashion, especially for families facing life-threatening illness. Recently, she ran a peer-only group for women with breast cancer and a second group for their partners, to give individuals in both groups a chance to "rehearse" talking with their spouses about particularly wrenching illness-related issues—changes in sexual desire, the urge to emotionally withdraw, the specter of loss. When McDaniel ultimately brought together the women and their partners in a joint group, "they were ready to deal with some enormously challenging issues together," she says. "Witnessing their work was very moving."  

Letting Life In

In the five months since my own weeklong immersion in a mind-body-spirit group, I have often recalled my first conversation with James Gordon in which he spoke of "illness as opportunity." After returning home from the training program, I was headache-free for nearly three weeks—something approaching a personal best. Then the migraines returned, as fiercely and implacably as ever. They continue to be a part of my life.

My response to these headaches, however, is no longer what it was. Now, when I first feel the finger of pressure against the back of my eyelids that signals an oncoming visitation, I take a pill—a much lower level of medication than my customary, heavy-artillery injections—and find a place to sit quietly for 20 minutes or so. Sometimes I just focus on my breath; other times I visualize a cool stream flowing through the interstices of my cranial blood vessels. So far, this ritual has been unable to thwart the pervasive enervation that attends these onslaughts, but sometimes it softens—or even dissolves--the pain. This newfound capacity to exert some control over my headaches, however imperfectly reliable, feels to me like a dazzling triumph.

But for me, the deepest teaching of this illness is not about my power to intervene on my own behalf, however grateful I am for that knowledge. Instead, the truest learning came in that moment of my group session on Hilton Head Island when I understood how thoroughly life-sapping was my driven, white-knuckled compulsion to stay upright on that tightrope. It came when I recognized not merely that my migraines might be partially fueled by my workaholic ways, but that this very single-minded, terrorized focus on perfection left little space for what I longed for most in my life, which was the solace and sustenance of simple belonging.

I saw, all at once, how often I missed the chance to truly be with the people I cared for, whether they were the nine extraordinary individuals whom I knew for a brief week or the people in this world I have loved longest and best--my husband and daughter, my mother and siblings, my dearest friends. I knew, deep in my gut, that I wanted a different life. And I knew, too, that I needed a way to transform this moment of felt understanding into something pulsing and real, not let it calcify into one more duly-noted intellectual insight.

And that is why, upon waking each morning, I no longer march dutifully from bedroom to office to begin another workday. Instead, I head downstairs to the enveloping, early-morning stillness of my living room, where I meditate. I had no words to describe the kind of difference this was making in my life until recently, when I read an essay by physician Rachel Naomi Remen about the Spanish bullfighting concept known as querencia. This term refers to the place in the ring where, mysteriously, a bull stops running and becomes utterly calm and peaceful, even though he remains in full view of the matador. The bull has found sanctuary; he is gathering his strength.

When I meditate, I feel myself seeking—and sometimes, fleetingly, actually make contact with—my own querencia. It is a place where I feel safe and rooted and somehow purely, intrinsically good. I rediscover—for I must have known it, once—the place in myself that doesn't need to be busy or productive or impressive or, in fact, any special way at all, in order to feel worthy of a place on this planet. As I stay with this practice, I am learning what it is to be enough—in the fullest sense of that word. It feels solid and quiet, and absolutely magical. 

And slowly, very slowly, taking the smallest steps imaginable, I am beginning to bring this experience of bone-deep trust out into the world.

To live it.

Resources

The Center for Mind-Body Medicine

5225 Connecticut Avenue NW, Suite 414

Washington, DC 20015

Telephone: 202-966-7338; Website: www.cmbm.org

The Center for Mindfulness in Medicine, Health Care and Society

UMass Memorial Medical Center

55 Lake Avenue North, Worcester, MA 01655

Telephone: 508-856-5849; Website: www.umassmed.edu/cfm

The Center for Training in Mind-Body Medicine

The Mind/Body Medical Institute

110 Francis Street, Suite 1A, Boston, MA 02215

Telephone: 617-632-9542

Website: www.mindbody.harvard.edu/center_training.htm

Commonweal Cancer Help Program, Tradecraft Workshop

Institute for the Study of Health and Illness

P.O. Box 316, Bolinas, CA 94924

Telephone: 415-868-2642; Website: www.commonweal.org

mariansandmaier.com