Once, in a time before Skype and combination therapy, when the first George Bush was president and Nelson Mandela was still in prison, I took a train from Washington, DC, to Durham, North Carolina, to tell Robert, the man I loved, that his best friend was dying. We had both lost people to AIDS by then. Robert had been part of a group of men and women, gay and straight, who had cared for a friend in the hospital in his last days, watching while the cancer in his brain caused him to hallucinate the lighting of imaginary cigarettes. Years before, that man had been the lover of Robert’s best childhood friend, Roy. Robert was drawn into his orbit, and to his bedside, largely through love of Roy.
Robert and Roy grew up in the same Oregon town. They had remained friends throughout college in Eugene, even during the years Robert dropped out to live in an ashram before returning to finish his degree. They moved in together after their friend died. When Robert was admitted to a PhD program in North Carolina, Roy did not ask him to stay in Eugene. Perhaps Roy knew already that he was sick. Perhaps not. He never said. When a friend visiting from Oregon mentioned to me that Roy, too, had AIDS, she was shocked that we did not know. I stared out the window for the entire train ride from DC to Durham, wondering how I would find the words to share news I did not want to give.
Robert and I live in Missouri now, where I direct an MPH program and teach public health storytelling to students who are passionate about obesity prevention, infant mortality, tobacco cessation, and, even now, HIV/AIDS. My students know that about 40,000 new cases of HIV are diagnosed each year in the United States and that, while gay men remain the group most at risk, black men who have sex with men are disproportionally so.1 Public health students love data; they design programs to prevent HIV with their heads full of numbers. The programs they design often focus on educating those most at risk. Knowledge is an important tool for prevention, but whether or not people can or will act on what they know depends on many factors. Increasingly, this understanding is reflected in proposals for health reform. A growing body of literature around the social factors that affect health2 underlies much of the movement to integrate health care and public health, for example.3 But there is another set of factors beyond economic class and race and gender and social isolation; they are difficult to quantify and rarely touched upon in our discussions of social determinants: Love. Fear. Anger. Regret. Desire.
To get at those, my colleagues and I at the University of Missouri ask undergraduate students in health sciences to do something exceedingly rare outside of English courses: to write fiction. In a study I am currently working on with health sciences and health psychology colleagues Michelle Teti and Victoria Shaffer, we have observed that students who are asked to build characters around HIV-related risk behaviors show growing empathy for those characters, as well as hopeful signs that they might extend that empathy to people they have yet to encounter. The results we are finding are consistent with research into perspective taking as an important component in the development of empathy among clinicians.4 Writes one participant, “At the end of the day, you know, everyone’s a person and … has hopes, has dreams, has regrets, has certain things they think about in the morning, has … certain secret talents that … not a lot of people know.”
When asked to reflect deeply, students are able to imagine seeming contradictions that play out on an emotional, rather than an analytic, landscape. They are no strangers to what Margorie Aelion and colleagues5 refer to as “the messiness of lives” in a recent American Journal of Public Health commentary on bridging public health and the liberal arts. Through the lens of imagination, they embrace contradictions. What is the greatest fear of an HIV+ character who does not use condoms? Infecting other people. The greatest fear of an HIV+ character who does not take his medicine regularly? Death. In quick scenes and imagined answers, knowledge recedes into the background behind love, the loss of love, and loneliness.
Medical humanities programs employ close reading of literature and reflective writing to cultivate empathy in medical students,6 but what about those working on the population level? Of what use is empathy with an individual, and an imagined one at that, to the prevention work and policy development that are at the core of public health? Cultural competence requires us to remember that while social forces exert powerful influences on groups, it is a mistake to assume that we know in advance how each individual within a group is shaped by those forces.7 As health care organizations engage with population health through informatics—for example, to identify factors that influence whether or not people take their medicine8—it is crucial to remember that populations and communities are composed of individuals. And that within each of those individuals beats a mysterious human heart.
An exercise that asks students to imagine, deeply, the point of view of one such individual reminds them that, while we can know which people are at highest risk for HIV and for which reasons, “Not everyone who has HIV is the same person.” Further, creating a fictional character requires imagining a person with both an internal and external life. It pushes students to consider both the factors outside individuals that impact communities, as well more hidden forces that we ignore at our peril.
Robert met me at the train station and I told him about Roy before we got into the car. After almost 30 years, I can still remember how he gasped for air, loud and sudden like a man emerging from deep underwater, when he heard the news. Why didn’t Roy tell him he was sick? He did not understand. I can remember the rotary phone that he used later that night and the way his tears fell into the mouthpiece. He had so many questions but, in the end, asked only one, the one he needed the answer to the most, “Do you love me?” Roy said he did. Of course. Yes.
After the call we cried and talked and Robert made plans to go back to Oregon. But when he called again to tell Roy he was coming, Roy said, “Don’t come.”
Narrative medicine programs acknowledge that art and literature have a role to play in promoting empathy in doctors,9 but there is as yet no equal counterpart in public health. I believe this is a mistake. Those whose work involves planning interventions and reviewing population data also need to perform the tasks of mental flexibility, of imagination, to think about the people behind the numbers. To reflect on the fundamental human dramas that are at play in each act of telling and not telling, of confronting one’s own death and running from it. Creative writing, literature, and art belong in public health education because that is how we make space for those emotions in our lives and connect with the emotional lives of others.
If people working in the area of HIV, or with other public health issues, don’t think love and regret and anger and fear have as much to do with the work as knowledge of the virus, then what are they doing? If we who train them don’t allow space for them to consider, in a deep way, those emotions alongside the data, then what are we doing?
Robert never saw Roy again. When he called the next time, the couple with whom Roy was staying said he didn’t want to talk to Robert on the phone. Later, we would ask ourselves so many questions: Had Roy felt abandoned by Robert’s leaving? Did he wish to keep Robert from performing for him the intimate and distressing caregiving tasks that they had both performed for their friend who died? Was it both? Whatever the answer, it was complicated, we suspected. It always is.
Acknowledgments: The author would like to acknowledge Michelle Teti, Victoria Shaffer, and Kristofer Hagglund for their time and feedback on the manuscript.
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