Rafael Campo’s compassionate care
The moment that Rafael Campo, M.D. ’92, still thinks about every day—when he enters an exam room where a patient is waiting, or sits at his desk to write a poem—came at the end of what had been the longest, hardest year of his life. These days he has a primary-care practice at Beth Israel Deaconess Medical Center, a teaching appointment at Harvard Medical School (HMS), and seven books of poetry to his name. But in June 1993, he was a 28-year-old just out of medical school who had spent the previous 12 months as an intern at the University of California, San Francisco Hospital, during the height of the AIDS epidemic. Nearly 40,000 Americans were dying every year from a virus that barely a decade earlier had had no official name; in San Francisco, the epicenter of the crisis, roughly 4 percent of the population was infected with HIV. Campo remembers making rounds in the middle of the night during his 80-hour work weeks, admitting an endless stream of gravely ill patients to the emergency room: “It was like a nightmare.”
He had seen sickness before. During medical school, he had accompanied doctors and residents on the wards, helping tend to people who were suffering, sometimes dying. And as a graduate student in creative writing during a year off from Harvard, he’d written hundreds of poems about those patients—their illnesses, their struggles, their courage “even when we didn’t have the answers.” But in San Francisco, everything was much worse. With so many patients dying so quickly, “There was no time for sharing stories—I mean, there was little we could do to help these people,” he says. “And the range of emotional responses to that kind of helplessness sometimes expressed itself in really hateful behavior toward the people who were dying.” Some doctors blamed AIDS patients for their own suffering; some simply wished for them to disappear. “Which was heartbreaking, and also heart-hardening,” Campo says. During his internship year, he stopped writing poems altogether. “I became very cynical during that first year. And really shared, to my shame now, some of the disgust.”
But something else was also at work. As the gay son of Cuban immigrants, Campo could not avoid seeing himself in the young patients dying in front of him. Most were brown-skinned, and nearly all were gay men. When he was a child he had imagined that a doctor’s white coat “might make up for, possibly even purify, my nonwhite skin,” he wrote in his 1997 memoir, A Desire to Heal. And after years of anguish over his sexuality, he had come out as gay to his parents only a year or so before moving to San Francisco. Amid this new, terrifying epidemic, he found himself inescapably bound to the patients he and his colleagues could not keep from dying.
Says fifty-four-year-old obese Hispanic
female – I wonder if they mean the one
with long black braids, Peruvian, who sells
tamales at the farmer’s market, tells
me I’m too thin, I better eat; or is
she the Dominican with too much rouge
and almond eyes at the dry cleaners who
must have been so beautiful in her youth;
or maybe she’s the Cuban lady drunk
on grief who I’ve seen half-asleep, alone
as if that bench were only hers, the park
her home at last; or else the Mexican
who hoards the littered papers she collects
and says they are her “documents”; if not,
it could be the Colombian drug addict
whose Spanish, even when she’s high, is perfect;
or maybe it’s the one who never says
exactly where she’s from, but who reminds
me of my grandmother, poor but refined,
lace handkerchief balled up in her plump hand,
who died too young from a condition that
some doctor, nose in her chart, overlooked.
And then in June 1993, he attended the San Francisco Gay Pride Parade, marching alongside other gay men who were insisting loudly on their humanity and demanding to be seen—fighting for their lives in the streets. “I remember feeling this physical embodiment of the slogans that activists from [AIDS coalition] ACT UP were chanting: ‘Silence equals death, silence equals death,’” he says. “I felt the power of community, how our voices join us, that we would not be erased.” For Campo, who had felt so isolated and alone—who had watched himself go silent—that day was tremendously renewing. It returned him to poetry. “It was empowering to know that my voice could be heard—that it was essential that it be heard. That changed my life.”
It changed the way he practiced medicine, too. When he sees patients now, it is without clinical distance or emotional remove. Campo is fully there, with what he calls his “authentic, complex self.” After the pride parade, it became a conscious part of his approach to be more vulnerable and open in clinical encounters. With patients, as with everyone, he is the physician, but also the poet, the gay man, the Latino, the striving second-generation immigrant, a husband, a brother, a person possessed of all his memories and knowledge and feelings—imperfect, but fully human. Patients, he’s discovered, find comfort in that. They trust it: “There’s an empathetic understanding that allows us to get past the five or 10 throat-clearing questions that aren’t really why the person is here in my office at that moment,” he says. “That sense of, ‘We know each other, we’re together in this experience’—in some ways allows me to be a better listener, certainly, but also a better physician.”
What it means is that Campo doesn’t look away…from anything—not from the diagnosis or the disease, or from his patients’ pain, or his own. Rob Vlock, a patient for 25 years, recalls the day in 2015 when Campo phoned to tell him that the cancer he’d recently been diagnosed with, a rare ocular tumor, might have metastasized. That MRI finding later turned out to be a false positive, but “It was a deeply emotional time for my family,” Vlock says. Campo stayed on the phone for as long as Vlock needed. “I don’t even know how long we talked….He coudn’t tell me it was going to be OK—he was looking at the radiologist’s report—but just to have him there was really meaningful to me.” Psychiatrist Elizabeth Gaufberg, a Harvard colleague, says that Campo “is accountable to all the same processes and procedures that can distance us as physicians from the rawest forms of human suffering….But at the same time, he holds the complexity and beauty and the richness and tragedy of human experience all at once.”
“A wonderful factory for empathy”
Recently, Campo was named poetry editor for the Journal of the American Medical Association, which for more than three decades has published a poem in each issue, usually written by a medical professional (“A-fib: An Irregular Sonnet,” was the title of one recent contribution). It’s one of the journal’s most popular sections—which says a lot, he believes, about the emotional connection doctors hunger for in their work. The editors receive thousands of submissions every year; about 50 are chosen for publication. “The largest overarching theme in the poems people submit is this notion of, how does one connect empathetically with the person who is in extremis?” Campo says. “Poetry especially is such a wonderful factory for empathy.…What I am looking for in the poems we publish are ones that establish that connection with the subject, but then also with the reader.
That’s a good description of Campo’s own poetry, much of which unfolds among patients and their problems. People arrive in his poems with failing hearts and bleeding infections and lumps that will turn out to be tumors; the doctors who care for them are achingly aware of the limits of their powers. “Forgive me, body before me, for this,” begins the poem “Morbidity and Mortality Rounds,” from Campo’s 2018 collection, Comfort Measures Only: “Forgive me for my bumbling hands, unschooled / in how to touch: I meant to understand / what fever was, not love.” And in another poem, “Quatrains from the Clinic,” the echoing refrain “They wait for me”—picturing patients in wheelchairs and paper gowns, wracked with headaches and palpitations, anxiously hoping that “they might live longer, long enough at least”—finds its answer in the poem’s last two lines: “Baring breasts / assessing wounds, I know that I’m too late.”
Hospital Writing Workshop
Arriving late, my clinic having run
past six again, I realize I don’t
have cancer, don’t have HIV, like them
these students who are patients, who I lead
in writing exercises, reading poems.
For them, this isn’t academic, it’s
reality: I ask that they describe
an object right in front of them, to make
it come alive, and one writes about death,
her death, as if by just imagining
the softness of its skin, its panting rush
into her lap, that she might tame it; one
observes instead the love he lost, he’s there,
beside him in his gown and wheelchair,
together finally again. I take
a good, long breath; we’re quiet as newborns.
The little conference room grows warm, and there
before my eyes, I see that what I thought
unspeakable was more than this, was hope.
Amid the catalog of symptoms and suffering, though, Campo’s poems also listen. Patients’ first-person stories—the particularities of who and how they are—shape his writing; his words are often theirs, quoted directly. This is intentional. For him, the impulse to write is partly a desire to give voice to patients whose voices are often silenced or dismissed in the therapeutic process. “We do this a lot in medicine, where we appropriate someone’s story and rewrite it in medical terms that only we can understand,” he says. “And that can be really harmful to patients, who need to have a sense of authority and authorship over what’s happening to them.” Campo’s patients are perhaps especially at risk of this kind of loss; many of them are poor or LGBT, people who have HIV, or who don’t speak English. Many are Latino. “Telling a story,” he says, “is a way of honoring and hearing another person.”
Sometimes Campo incorporates poetry even more explicitly into his practice. Several years ago, he began holding workshops with patients, convening a whole circle of people with cancer or HIV, leading them through writing exercises and close readings of poems. “One thing I see universally is how it breaks down the isolation that people feel in the experience of illness,” he says. “As soon as that first poem gets read aloud, there is a sense of intense community, a shared experience of voice. And in that, there is a potential for healing.”
Campo often uses that word, “healing,” always careful to contrast it with the narrower, more scientific “curing.” Even when a cure cannot be found, he says, healing is still possible. Not long ago, he diagnosed one of his patients with metastatic pancreatic cancer. It was a shock. “He’s a young person, and fit,” Campo says, “and a lot of what he’s trying to cope with is confronting mortality.” The cancer isn’t curable. “In those kinds of moments, I think, it’s even more important to be able to sit quietly with him while he’s crying. And to cry myself, because what he’s facing is really tragic and really painful.”
Sometimes, he will slip a few photocopied poems—something by Gertrude Stein, perhaps, or Marilyn Hacker—in among the pamphlets and printouts he gives to a patient. “I’ve thought a lot about him doing that,” says Harvard professor of English Elisa New, a close friend and frequent collaborator. “Even if the patient doesn’t read the poem… the fact that a patient would hear that their doctor was thinking about them, and in a way that made him want to give them a poem—that’s really a literal gift, to anybody.” But most patients do read the poems; often it’s the first thing they want to discuss in follow-up appointments, and very sick patients, knowing they may not survive, have sometimes asked Campo to read a poem with them—“this ancient art form,” he says, “that sustains us even when biomedicine can’t.” Poetry becomes a springboard, he believes, into deeper conversation. “It’s hard to explain it. But I guess it’s a kind of gesture that says, ‘I want to know the whole story.’”
Embedded in that gesture is another, broader message that’s woven throughout his poetry: you are not alone. None of us are—“We all get sick and die,” Campo writes. Even physicians will someday become patients, an inevitability that promises not only pain and grief, but beauty and love. All this distills in a slight, subtle poem called “On Doctoring,” which opens on an ordinary morning, with a physician examining a man’s knee, sore and scarred from surgery (“I move the joint for him, a gentle sweep / through its full range of motion”). Then, midway through this half-distracted moment, a dawning perception takes hold, almost too big for the exam room to contain:
the body’s workmanship, how perfect is
its service to the soul it shelters, each
soft hair along the shin enshrining touch,
this way we’re made to need each other’s care.
“A kind of wound”
Campo had always understood poetry as a force for overcoming separation. When he was a boy, that meant Cuba. His paternal grandfather, having fled Franco in Spain, settled on the island and raised a family, but then was jailed during the Cuban revolution and the family was forced to flee again, this time to New Jersey. Campo was born there, growing up bilingual in a town with almost no other Latino children. “There was a kind of wound that we experienced as a family,” he says, “in the loss of Cuba, our home.” Poetry became a way to repair the fracture, and for his parents and grandparents to “keep Cuba alive” in Campo and his siblings. As a child, he read Versos Sencillos (Simple Verses), by the Cuban independence hero José Martí, and remembers “being amazed to learn that the father of the Cuban nation was a poet.” The famous patriotic song “Guantanamera,” which Campo’s grandmother crooned in her candlelit bedroom, takes its lyrics from a Martí poem. One verse imagines poetry as “a wounded deer seeking refuge in a faraway mountain,” Campo says—“an image of brokenness, but also healing.”
He arrived at Amherst College in 1983, already planning to become a doctor. But poetry had drawn him there, too—Richard Wilbur, A.M.’47, JF ’50, was then an Amherst professor, as Robert Frost, class of 1901, Litt.D. ’37, had been earlier; Emily Dickinson’s home stood half a mile away. Campo majored in neuroscience, but he also found, he says, “a kind of invitation to think about poetry and literature as an equally powerful way to make sense of the human condition and human suffering. That was wonderful, the idea that you could join science with poetry, these two ways of knowing about us.”
You died; what else is there to say? I could say AIDS,
but that was what your blood kept saying, tubes
of meaning that the lab deciphered. Days,
I could say, passed not solving Rubik’s Cube,
as scrambled as your brain became. I could
say love, but what fucking good would that do.
I could say that I loved you like I should,
but now I’ve built up a resistance too.
I could say nothing. Or I could say why,
but what is asking when I should be saying.
I could say something lyrical or cry
the way I wasn’t capable of crying.
I could say what I couldn’t say back then:
I don’t know how to die, so you begin.
Poetry also helped repair another fracture in his own life: one course he took was with Eve Sedgwick, a literary scholar who a few years later helped found the field of queer theory. Her effect on Campo was profound. For years, he’d wrestled with a growing awareness of himself as gay. “My earliest attractions were to men,” he says, “and I desperately tried for years to exorcise it from myself.” Studying with Sedgwick, he began writing poems as a way to give voice to his identity, to begin to come out. (He also found the man who would become his husband at Amherst, classmate Jorge Arroyo, M.P.H. ’02, now an HMS associate professor of ophthalmology who also practices at Beth Israel Deaconess Medical Center. The two have been together for more than 30 years.)
Medical school was an altogether different experience. Campo often jokes that when he came to HMS, what most perplexed professors and classmates wasn’t that he was gay or Latino, but that he was a poet. “That really freaked everyone out,” he says, laughing. But it wasn’t a joke then—medical school was in many ways deeply dispiriting. He found no room there for the humanistic reflection he was used to; instead, the curriculum focused exclusively on science and biology. “My first year taking care of patients on the wards as a medical student was disastrous,” he says. Professors discouraged emotional connections with patients. “’Just the facts,’” he recalls. “We were taught that one had to maintain distance and not feel anything about what we were seeing—painful as it might be—in order to make appropriate clinical decisions.” To Campo, this seemed wrong. “I didn’t just want to be a technician. I wanted to be a healer in a broader sense.”
After his third year, worried he’d made a mistake, he left medical school and enrolled in a creative-writing master’s program at Boston University, where he spent a year studying with poets Derek Walcott and Robert Pinsky. “That was a watershed moment,” he says. “All these poems, all these stories, just poured through me.” Campo wrote about being Cuban and being gay; he wrote about erotic love and family and citizenship—and he wrote about his patients. “I think I drove my poetry classmates a little mad, because I would come home and write, like, 20 sonnets in a night.”
He returned to HMS renewed and reoriented, and after graduation headed to San Francisco, for the internship year that would become such a crucible. It sometimes feels odd to look back now, he says, at how hard the struggle was to balance medicine with poetry, how alone it made him feel. These days, “I can’t imagine one without the other,” he says. “They are so integrated for me in my experience of being a doctor and caring for people.”
“Letting go of feelings they’ve bottled up”
Campo began teaching at HMS in 1996. Some things have changed in the decades since. Medical schools now speak openly about the need to foster empathy in students, and around the country, doctors and scholars like Campo have been advocating with some success for what is sometimes called “narrative medicine,” or the “medical humanities”—the idea that engagement in literature and the arts makes for better, more sensitive physicians. “We are our physical bodies, where diseases occur,” Campo explained to one recent audience of clinicians, “but we are also our words and language. And it’s incumbent on us as healers to think about how language shapes the experience of illness.” In 2015, HMS launched the Arts and Humanities Initiative, a program intended to cultivate empathy, reflection, and humanism among students, and to sharpen their ability to communicate and relate. Campo is its director of literature and writing programs.
Outside the formal courses and workshops he leads at HMS, Campo organizes a more casual gathering every month or so at his home. It’s intended for students, but anyone is welcome. Over homemade cookies and flan—or roast pork and rice and beans (“Cuban food is my specialty,” he says)—the group spends a few hours reading and discussing poems and writing their own reflections, often about a particular theme: death and dying, delivering bad news, renewal and resilience, the social determinants of disease. Campo’s reading list includes authors one might expect—William Carlos Williams, John Keats, both physician-poets—but also Walt Whitman, Mark Doty, Audre Lorde, Lucia Perillo, and Danez Smith.
The gatherings are extremely popular, and Campo has to limit attendance to 20 or so people. “The email goes out,” says fourth-year student Robert Weatherford, “and 10 minutes later it’s full.” The structure of the sessions allows people to open up, completely unguarded, he adds. Elisa New has attended a few times and says it’s not unusual for participants to cry. “Medical students are extremely stressed-out people,” she says. “They’re seeing things and participating in human joys and sorrows—especially sorrows—that they find shocking, and hard to assimilate.” At Campo’s seminars, “students leave with a text that they’ve understood with a bunch of other people, and that can continue to supply wisdom to them in their lives. It allows for a kind of letting go of feelings they’ve bottled up, but it also fills their tanks with ways of understanding what they’re going through.”
One looks at me as from a distance.
Another does not cry; “It’s only pain,”
she says, as if cancer were just a nuisance
one looks at square, from a distance.
Outside the window, sunshine, like persistence.
Yet how Bach from the radio seems like rain.
She looks at me. From this great distance
I’m another who cannot cry. Or feel pain.
Campo knows that, too. As much as humanistic exploration can improve care for patients, it is also healing for physicians. It keeps them whole, especially as data and technology in medicine overshadow the doctor-patient relationship. “Right now, we’re in an epidemic of physician burnout,” he says. Soaring numbers of doctors and medical students report feeling depressed, fatigued, anxious, and suicidal; a survey released in January found more than 40 percent of physicians suffer from burnout. At the same time, research demonstrates the ameliorating effects of the humanities. A 2018 study in the Journal of General Internal Medicine found improvements in wisdom, empathy, emotional intelligence, and tolerance for ambiguity.
On a Monday in mid March, Campo was in a basement conference room in Beth Israel Deaconess’s infectious-disease division, a tiny space tucked behind a clinic, where he’d come to lead a lunchtime seminar on poetry about HIV and AIDS. At about 12:30, people started trickling in—doctors mostly, but also a few residents and interns—until about a dozen were sitting in the chairs Campo had carefully arranged around the enormous table. He handed out copies of several poems and asked if anyone had encountered narrative medicine before. Some tentative nods. “How do stories affect us?” he asked a few minutes later, circling back. “When a patient tells you a story, how does that change your view?…How might it help you?” By dispelling assumptions, one woman answered; by clarifying decisions, said another. Someone noted that telling a story can make both patient and caregiver feel better, closer. Then a white-haired doctor spoke the word Campo was looking for: empathy. “Having lived through the AIDS epidemic when there were no therapies,” he said, “I have never been able to get out of my mind the last months of a very bright, productive young man, dying of AIDS, who had never been able to tell his parents that he was gay or had AIDS.” He stopped for a moment, remembering. “And just the anguish I thought that must be for him.”
All at once, the air in the room seemed to shift. A pause deepened. The group turned to the poems—Assoto Saint’s “Nuclear Lovers,” Thom Gunn’s “The J Car,” Marie Howe’s “What the Living Do”—reading them aloud and poring over images, emotions, things left unsaid. They talked about survivor guilt and the small meaningful moments—some traumatic, some beautiful, some ordinary—that unfolded every day in their jobs. They teased out metaphors and tragic ironies; they talked about how a poem’s orderliness works to contain uncontainable grief, and how poetry’s physicality—the rhythm, rhyme, line breaks, the shape of words and stanzas—evokes the experiences of the body.
“What other thoughts?” Campo asked the group again and again, waiting as their shy silences turned to searching answers. Reading Howe’s poem, addressed to her brother, who died from AIDS, one doctor was reminded of encounters with surviving family members after a patient’s death. “That moment when you’re clearly not there to provide health care for the person who is lost, but as a moment of memory,” he said. “I think about the witness we can bear for the people left behind.”
And then suddenly it was 1:30. Campo looked up at the clock and smiled ruefully back at the table. Three poems remained unread. “And I’m sorry we didn’t have a chance to write together,” he said. As the group began to rise from their chairs, not quite shaking off the spell of the past hour, one doctor leaned toward Campo. “This was wonderful,” he said. “You’ll have to come back.”