Where disease meets literature

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Growing up, my interests in disease and literature felt fundamentally incompatible. This changed last year, when I was a Teaching Fellow for a medical humanities course at Harvard. 

In the Mauritian secondary school system, interests are expected to emerge and evolve according to neat compartmentalizations. One may pick the science stream (and aspire to be a doctor or engineer), the economics stream (and go on to accounting or business), or the arts stream (and later read law). Frustrated by these rigid intellectual boundaries as a teenager, my method of rebelling was to multiply and diversify the subjects that I studied: I eventually sat for 11 Olevels, ranging from physics to sociology. However, a decade later, my intellectual project is less about juggling seemingly disparate disciplines, and more about exploring their rich intersections.

During the last semester of 2020, as the COVID-19 pandemic swept across the globe, I was Teaching Fellow (TF) for “Disease, Illness and Health Through Literature,” an online course at the Harvard Division of Continuing Education (DCE) taught by Harvard Comparative Literature Professor Karen Thornber. The course introduces students to the exponentially growing field of medical humanities, which draws from disciplines such as literature and philosophy to explore the varied human dimensions of sickness and health. The medical humanities in no way seek to replace traditional medical training; rather, they supplement and enhance the scientific way in which we understand and approach medicine. After all, if the symptoms ravaging a human body can be objectively assessed, their full implications on an individual invariably depend on complex and interwoven factors such as gender, race and class. While a “disease-centered” approach focuses on the disease (as having latched onto a specific body), a “patient-centered” approach centers on the individual (suffering from the disease). Going even further, the more holistic “person-centered” approach broadens its focus from the patient alone, to the panoply of stakeholders - parents, children, siblings, family and professional caregivers - often affected by a single person’s illness.

As the online semester progressed, I led discussion sections about texts from all over the world, each a prism that refracted unique light on human experiences of disease. American writer Rebecca Skloot’s nonfictional The Immortal Life of Henrietta Lacks introduced us to the unauthorized use of a poor black woman’s cells for scientific research, while her own family remained mired in poverty. The work forced us to confront the racism latent in the medical community, and was echoed in quotidian articles from the developed world that decried the disproportionate impact of COVID-19 on communities of color. Japanese writer and physician Mori Ōgai’s short story “Takase Boat” encouraged honest reflection on what makes a life worth living, and when death is a merciful option; Egyptian writer and physician Nawal El-Saadawi’s novel Memoirs of a Woman Doctor examined the particular obstacles faced by a woman attempting to practice medicine in a conservative society. Other readings invited us into the mind of a man paralyzed by stroke (French writer Jean-Dominique Bauby’s memoir The Diving Bell and the Butterfly); pushed us to imagine the hard labor of caring for a family member who has changed beyond recognition due to Alzheimer’s (American writer Marita Golden's novel Wide Circumference of Love); and called into question the crippling stigma and stereotypes attached to HIV/AIDS (Chinese writer Yan Lianke’s novel Dream of Ding Village).

True to the nature of Harvard DCE classrooms, my students were all at different stages of their lives and careers. As they each deeply engaged with the course materials from unique vantage points, I began to recognize ill health as one of the most intensely personal, and yet universally relatable, facets of the human experience. Having suffered from a health issue, or having known or cared for someone who is ailing, might be one of the very few experiences that are truly universal - that cut across differences such as citizenship, race and gender. In contrast to this commonality, the paucity of dialogue around lived realities of disease is startling. This silence is largely attributable to stigma: One is quick to judge those suffering from a number of diseases, such as diabetes and many forms of cancers. Literature that explores the complex and contradictory dimensions of disease, then, becomes a valuable platform to dismantle stereotypes and begin general conversations with intimate resonances. Rooted in empathy, it encourages reflection on how our bodies are linked by the fragile thread of human vulnerability, while they remain divided by a host of societal and skin-deep factors.

Perhaps one of the few positive side effects of the global pandemic is that topics of health, as well as their policy and human implications, are now unprecedentedly entrenched in collective consciousness. Experts assert that it will be a long time before we, as a species, have fully dealt with the “mass trauma” of the pandemic. From the very beginning, art and literature have been important stakeholders in acknowledgment and healing efforts. A notable early example - also studied in the course - is Chinese writer Fang Fang’s novel Wuhan Diary: Dispatches from a Quarantined City. Beginning as a series of social media posts, Wuhan Diary struggled against censorship and played a pivotal role in calling attention to the world’s first COVID-19 lockdown. Fang Fang’s writing defied the crushing weight of isolation. Instead, it wove a story of human integrity, resilience and solidarity that came alive to enfold millions of readers across the globe. In the same spirit, quarantined people across the world are refashioning social distancing restrictions into parameters for collective artistic innovation: They share music across balconies, join up for virtual museum tours, and upload short videos from the intimacy of their own homes. What better testament to the indispensability of creative forms of meaning-making.

During scattered pockets of free time, on a Word document tucked away at the far edges of my desktop, I sketch out a Mauritian-flavored medical humanities course. There is no dearth of primary material. To name just a few examples, Claudio Veeraragoo’s rhythmic “Séga Corona” and Shenaz Patel’s short piece “Chronique d’une confinée” offer precious insights into the Mauritian pandemic experience. Ananda Devi’s novel Manger l’autre delves into disordered eating and the havoc it wreaks on the female body and psychology. J.M.G. Le Clézio’s novel La Quarantaine revolves around the 19th-century practice of quarantining travelers on l’Ile Plate to keep smallpox away from the Mauritian mainland. I look forward to the emergence of more testimonies and fiction related to diabetes, hypertension and cardiovascular disease, the silent killers that hold our country in its grips; as well as about mental and reproductive health, issues that affect thousands and yet remain shrouded in silence. May we not underestimate the potential of art and literature to keep the conversation going.

Nikhita Obeegadoo is a PhD candidate in Romance Languages and Literatures at Harvard University. Find her at nikhitao.com, and contact her at [email protected].

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