Bodies Evoked in Words: Two Views of Activism, Illness, and Art


Whether overtly or subtly, you can learn a lot about the world that produced a book, film, or painting if you look closely enough to the circumstances of its making. Some creative works are themselves a start to a debate, a refutation of a political point, or a heated argument in textual form. For decades now, healthcare in the United States has been a hotly-debated issue. It’s no shock to see that the ongoing debates around the Affordable Care Act–from its inception to its rollout to its fate–have coincided with the popularity of a number of acclaimed and well-read memoirs about illness, medicine, and what they can tell us about ourselves and our society’s relationship to health and mortality.

Not every memoir recounting a harrowing experience with an illness or other medical condition is explicitly political–but the fact that they at a point in American history when discussions over the state’s relationship to the health of its constituents have grown particularly heated makes them far from apolitical. And it’s difficult to imagine someone reading one of these books without an increased amount of compassion or empathy for their authors–and, by extension, people grappling with life-threatening conditions.

Some memoirs grapple more directly with the political implications of living with illness in contemporary (or almost contemporary) America. The Weight of the Earth, edited by Lisa Darms and David O’Neill, is a collection of tape journals recorded in the 1980s by the artist and writer David Wojnarowicz. The journals from the second half of the book are from a time after he was diagnosed with HIV, and his art reflected a powerfully focused activism against the segments of American society that ignored the growing presence of AIDS.

In the recordings that begin in 1988, Wojnarowicz candidly discusses the experience of living with illness — “I was diagnosed with ARC sometime in the summer,” he says early on in the first journal entry from 1988 – while also musing on other sociopolitical matters. In a recording from 1989, for instance, he muses on the economic disparities he witnessed on a trip to Mexico. While visiting an economically devastated part of Mexico City, he observes “that this was the future of New York”–namely, increased economic stratification, with a growing depletion of the middle class.

Elsewhere in the journals, Wojnarowicz discusses his everyday experiences with his illness, and the process by which thinking too much about it creates a kind of paralysis: “the fatigue itself robs me of being able to follow compulsion,” he says at one point. It’s a powerful account of the ways in which illness and art can themselves overlap. To read these journals is to gain a greater sense of what one artist’s experience was like–and to give a tactile sense of his shifting relationship to his own body, his art, and the greater world.

Porochista Khakpour’s Sick offers a very different, though no less harrowing, portrait of living with art and illness in equal measure. Sick focuses on Khakpour’s life with late-stage Lyme disease; though the structure of the book moves dramatically through time and space, her life with this condition, and her connection to her body, forms the work’s spine. In an Author’s Note that opens the book, Khakpour notes that there are certain things she can’t know for certain about the disease: it’s possible that she contracted it in the late 2000s, but she may have had it since early childhood.

That ambiguity is at the center of one of the most unsettling parts of the book: the failure of certain institutions to offer support–whether through an incorrect diagnosis or an ineffective treatment. Sick also reminds the reader that life with chronic conditions doesn’t happen in a vacuum: one harrowing section describes the aftermath of a car accident, which in turn complicates the experience of the Lyme treatment. Sick is a document that places the flaws of the American healthcare system in tandem with other societal flaws: nativism, toxic masculinity, and economic inequality among them. “My Lyme relapses almost always coincide with global turmoil,” Khakpour writes midway through the book, adding another layer to an already-compelling argument about the connections between disease and trauma.

Alternately: Sick is a memoir that reminds the reader that chronic illness doesn’t happen in a vacuum. There are other factors that can complicate or accelerate certain conditions, and there are certain personal connections that can do the same. That said, Sick also powerfully juxtaposes moments of helplessness with scenes of joy and desire, from emotional connection to creative breakthroughs. It offers a quotidian glimpse into Khakpour’s life and routines, using specificity to create an even more powerful narrative.

In the end, both The Weight of the Earth and Sick convey a powerful sense of the lived experience of dealing with illness. But through their authors’ experience with activism, they also offer something more than that: a way in which one can explore how societies’ deficiencies are reflected in their approach to healthcare, and a window into empathy for those whose health and security are at stake.


Image source: Rastrojo via Creative Commons.

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