Jonathan Galla, September 2017
When I began thinking about how to write around the idea of Narrative Medicine, I couldn’t help but turn back to what brought me here: to this field of illness, of narratives, of where the disease meets the written page as easily as it meets the patient’s body. I immediately thought of Susan Sontag, that tour de force writer-critic who redefined how we think about the mythologies of illness. In finding Susan Sontag, we see how life and literature do not have simple barriers. This essay explores how narrative medicine has grown from its initial understandings, through the lens of one of its prolific inspirations, and the legacy of her writing and activism.
Perhaps, a proper introduction to the practice of narrative medicine comes not from a clinician, or a student, but an outsider: one who does not have intimacy with the medical system or its hierarchies, a person who instead captures the experience of illness itself. Thus, I introduce Susan Sontag, author of Illness as Metaphor, “The Way We Live Now,” and many other groundbreaking texts on the relationship between illness, language, and experience. She was not just a writer, but also a figure who has heavily influenced activism and medical practice after her death. A truly international figure, she wrote not only in the US, but dabbled considerably in Parisian intellectual circles and was widely read and translated around the world. As an activist, Sontag spent a significant time writing and practicing her activism in Sarajevo, where she directed a production of Beckett’s Waiting for Godot amid the constant threat of snipers during the civil war (1). Certainly, one could point to the many aspects of her legacy in the present humanities, but one that has often gone overlooked is how she challenged our understandings of illness through her own experiences: most notably, that of cancer.
Cancer was no stranger to Sontag: she was diagnosed once in the 1970s and again in the early 2000s, culminating in a ruthless struggle that took her life (2). This journey, as individualized as it was in her suffering, was one she ultimately chose to share. Her partner, the famous photographer Annie Leibovitz, graphically documented the final moments of her battle with cancer. One can easily find the images online, if not in her large folio-sized autobiographical photobook: Annie Leibovitz, A Photographer’s Life, 1990-2005. I leave you not with the ominous images themselves, but their resonances: just as Sontag famously wrote On Photography without images, so illness transcends the written page, the photograph, or any medium that circumscribes its wrath.
Pre-cancer shot: Susan is lying comfortably on a sofa in their long island house, looking in health with black hair and an intense stare.
Shot one: her long hair with the signature white lock is gone; in place is a jet-white barber’s cut.
Shot two: bedridden, Susan is loaded from the tarmac onto a charter plane headed for New York, her final resting place.
Final shot: a handsewn panorama of the no longer living. She is laid out next to the hearth, arms folded but the marks of a violent death left untouched. Her arms are bruised, and the body looks cold and pale in the light. No one is left untouched by death, the photograph whispers with its art of intimation.
To those familiar with Sontag’s work, her choice to allow these images to proliferate bear no discrepancy with her life’s work to understand, document, and humanize pain. As a public intellectual, she sought to bring the common experience of illness into critical or literary analysis, most notably in her book Illness as Metaphor, published shortly after her first bout of breast cancer. In Illness as Metaphor, Sontag describes the intimate connection between illness and everyday language. Sontag writes of the banality of comparison everyday life to the disease, slowly losing its weight in the imagination with overuse and misapplication. Most importantly, she described not the experience of illness–an experience we all come to know–but how illness metaphors have been appropriated into society: the ‘cancers on our society,’ the ‘plague’ of annoyances. She wrote, “My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking” (3). For Sontag, metaphoric thinking is not the antidote, but the very poison to experience.
What Sontag ultimately argued was that disease, as metaphor, inherently takes on a moral context through its equivocations. The phenomenon she traces is not only a moral dilemma, but harmful to how illness is interpreted and understood. Indeed, humanity has a capacity to trace illness with superstition, from the ‘miraculous starvation’ of female saints in the middle ages to relatively recent hypothesis of a ‘cancer-prone’ personality. Yet this appropriation of the illness metaphor weakens the gravitas of illness experiences, depriving them of their proper significance at best, stigmatizing and demeaning the ill at worst. These ‘ills of society,’ rather than defining social problems, cast judgment on those individuals who are ill, leaving greater questions unresolved.
Sontag’s line of thinking has started a legacy in how we think about disease and its languages. When someone is ‘battling’ cancer, why do we use that word, and what are the implications of the exchange in meaning between disease and war? Certainly, when one ‘loses’ their battle against a disease, it is hard not to wonder if those who won have any superiority, be it due to their genetic hand of cards or biological chance, or something more sinister: their ability to pay for the latest and greatest life-extending treatment, the environmental variables (read: pollution, geography, living in the ‘right’ neighborhood) that lead to the disease being a worse.
Of course, the debate continues, and still I have no answer as to why someone ‘loses’ and another ‘wins,’ dichotomies notwithstanding. But medicine is not about winning or losing–it’s about healing, the easing of the body and spirit. When metaphor dances a dangerous dance with illness, morality soon creeps into the picture. Without an impartiality of language, nobody wins from the inequity that follows.
Today, Narrative Medicine (capitalization intended) does not exist merely as an edgy experiment by writers like Sontag, nor is it a rebellion against the medical establishment, psychiatric institutions, or the common past suspects of indignity of the medical system. It is an everyday approach to best understanding a patient’s chief complaint, an economic alternative to the standardization of charts, Electronic Medical Records, and the endless quantification of the patient’s condition.
Are we returning to the past? An era in which a country doc writes out notes in a dusty workbook and pulls an aspirin out of a mason jar? Not quite. Comical as it could be, narrative medicine exists in a contemporary field of medicine, and importantly, a contemporary understanding of what narratives are–how they exert themselves not only in the medical world, but also our lives and society more broadly. As a future physician, I constantly ask myself what kind of doctor I hope I will become, and who else will work around me. In essence, this marriage of medicine and narratology seeks to acknowledge the limits of diagnostic tools: the chart, the physical exam, the narrative of illness.
Sontag left an indelible impression on the field, and indeed, there is something to be said for how clinicians and researchers think about language in their practice. What does it mean to understand someone’s story when their language is not the same as your own, coming through the translation of an interpreter? What if someone lacks the knowledge base to use that very language? How do clinicians work with marginalized communities to not only aid their understanding, but empower community health by acknowledging their language and narratives? Narrative Medicine, in its wide reaching arc across disciplines, certainly has learned and continues to learn from the ability of language to mediate and transform our understanding of disease, care, and the human condition.
- Burns, John. “To Sarajevo, Writer Brings Good Will and ‘Godot.’” The New York Times. August 19, 1993.
- Wasserman, Steve. “Author Susan Sontag Dies.” Los Angeles Times. December 28, 2004.
- Sontag, Susan. “Illness as Metaphor.” The New York Review of Books. Jan 26. 1978.
Image credit: Jill Krementz, 1974