COVID-19 Narratives

Covid 19 in Charleston: Curating Health Narratives in a Time of Crisis

Kathleen Béres Rogers

When I initially planned English 290, Illness Narratives, I had conceived of it as a service learning course. Students would develop relationships with hospice patients and work together to write their stories. This process, which I described in Service Learning and Literary Studies in English, has helped students develop relationships with community members and also gain a greater understanding for the contexts—socioeconomic, racial, cultural, gendered—surrounding illness.

And then COVID-19 happened, and everything changed. We obviously would not be visiting with high-risk hospice patients; in fact, we never even met one another in person. Instead, our classes were synchronous, on Zoom, and involved a variety of visiting speakers, like Anna Lonon, Ebony Jade-Hilton, and Amy Mercer, each of whom shared their own illness narratives.

Yet I still wanted my students to engage with their communities, to better understand the varieties of contexts surrounding illness (both physical and mental). At the same time, my colleagues Amy Mercer, Cara Delay, and Beth Sundstrom decided to embark on a research project basically collecting narratives of people in the lowcountry who have lived through—and continue to live through—the COVID-19 pandemic. What better way to engage my students with their communities than by having them conduct and then analyze these interviews?

To do this, the students went through CITI training to learn IRB protocols; then, on Zoom, they conducted 45 minute to an hour-long interviews with other students, professors, and even some community members who had volunteered for the study.

In class, we read work by a variety of authors who formulated theories of illness narratives. Arthur Frank, a sociologist and cancer patient, wrote The Wounded Storyteller: Body, Illness, and Ethics (Chicago UP: 1995). Here, Frank critiques what he calls the “colonization” of medicine: the patient becomes a thing to be poked, prodded, experimented on, and written about. For Frank, the illness narrative becomes an act of agency, a way for the patient to regain their individuality. Frank also formulates three types of illness narratives. There is the restitution narrative, the one we see on television, in pharmaceutical commercials. The patient is sick, is treated, and then is well again. And yet, Frank argues, this is rarely ever really the case. Instead, the patient might undergo a quest narrative, in their self is changed by the experience of illness. And undergirding it all is the chaos narrative, a narrative without an ending, a narrative that can never fully be told by the sufferer in the midst of chaos because it evades language. In class, we discussed just how difficult it is for our society to come to grips with the chaos narrative: healthcare practitioners, and tellers of stories, want a neat beginning, middle, and end.

In fact, narrative medicine entered healthcare with the work of Dr. Rita Charon, an M.D. internist and Ph.D. in English Literature. Charon pioneered the study of patient narratives with her book, Narrative Medicine: Honoring the Stories of Illness (Oxford UP: 2008). As opposed to a clinical view of medical practice, Charon here espouses a narrative view: using narrative tools in order to better listen to, understand, and empathize with patient stories. Charon stresses that, in addition to words, clinicians must become attentive to clues like body language, an important point for students to consider when conducting interviews.

More recently, the field has been enriched by the work of Sayantani DasGupta, whose TED talk we watched in class. As we prepared to interview community members, we returned time and time again to her point that we all think we know what stories we will hear. We all approach others’ stories with our biases, so it is important to practice narrative humility, a practice akin to active listening without judgement. When they visited our class, Drs. Sundstrom and Delay also stressed this, especially considering all of the political, racial, and geographic biases surrounding the COVID-19 pandemic.

I am honored to have worked with these students, and to share these stories of living through the COVID-19 pandemic.