Illness As Narrative

1. In Illness As Narrative writer Ann Jurecic takes gentle aim at the tyranny of the “hermeneutics of suspicion” in academia—in which art and artist become suspect while the critic finds herself transformed into a kind of ironic detective, lauded for the failures and crimes she can sniff out behind the text’s surface presentation, the artist’s stated intent. Developed by the philosopher Paul Ricoeur in the early 20th century and absorbed into the leading framework for and interpretative response to art in the post-World War II university system, the “hermeneutics of suspicion” puts its faith in the distrust and deconstruction of texts as well as in the exposure of the impossibility of authorial and narrative coherence, authenticity, and authority. While such an unerring faith in artistic suspicion and narrative failure may appear to ameliorate one’s sense of being duped or manipulated by cultural stories that reinforce entrenched systems of power and domination, it also, in the words of Jurecic, misses the potential for the truth that arises from the momentary, the intimate, the embodied, and the fragile. It misses the potential for repair, however flashing and ephemeral, amidst a world that wounds, tears apart, refuses to cohere. “Projects approached reparatively … attend to the significance of the local and contingent,” Jurecic writes, drawing on the work of queer theorist Eve Kosofsky Sedgwick: “The reparative writer and critic does not strive to restore the past or stabilize the present but rather to perform repair in the moment for the moment.”

2. Jurecic goes on to trace the illness narratives and care practices taken up in later life by prominent writers, artists, and critics, citing them as “projects of repair” initiated even by those who at first seemed to deride such a practice. See Susan Sontag’s fiction, Jurecic says, see The Volcano Lover. See how critics focused only suspicion have missed how “Sontag herself turned to narrative to address her sense of disconnection … [and] that stories can be tools of understanding.” See Michel Foucault’s hupomnemata, his Care of the Self, the final months of his life devoted to writing about constructing, performing, and caring together: “This influential thinker, who theorized ‘the death of the subject’ faced his actual death by thinking instead about how lives and selves can be made into works of art.” I think about art in the anthropocene, and how I am drawn to the idea of art as something beyond the human, something created within a context and later exceeding its context. An attention to the intimate as a destruction of the intimate on the path to other meanings, how narrative’s intent can change like that, too.

3. In the moment of climate crisis, for the moment of its rapid continuing: “Narrative is the enemy,” Roy Scranton writes in his ecocritical essay subtitled “Stories Won’t Save You From Ecological Destruction” and though I love Scranton and find value in his arguments—
   meditation on death
   doom as an imperative to act
   interruption as an ethical action
   ecopessimism as a necessary orientation to our rapidly changing world—
   I cannot divest myself from the faith in narrative as what lays the groundwork for everything Scranton describes. Without story, I cannot learn to divest myself of story. Without a narrative that makes sense, I cannot learn to critique what makes sense, and what or who gets labelled as nonsense. Without a thread of beginning-middle-end, action-and-reaction, I cannot learn to break the thread, to dwell in interruption as what instigates something new. Breaking requires something first to be broken, or to appear first as whole. Interrupting requires something first to be continuous, or moving, time and progress taken for granted.

4. For Scranton, “One must not resist, one must not react: one must interrupt the flow with infinitely slower flow, one must do less, one must be nothing less than less than nothing, pure and total negation, stopping time” and when he says “stopping time,” I think of Jurecic’s notion of momentary repair, though perhaps both authors would cringe at my tying them together like that. I think about my individual illness, about how the meaning of my life has been interrupted, cast aside, turned over, the body as narrative, and cancer as raw data. A cancer cell is a cell whose structure has grown long, chaotic, interrupting. Its image, on an ultrasound screen, is fuzzy, negative space, firm borders broken down and through.

5. I won’t get the old thing—my old body, my old narrative—back. I take selfies these last days before surgery, filing away mementos for myself of what I look like now that it is already as good as gone: hair, breasts, eyebrows, perhaps fingernails and lashes. Outer signs still here for the moment but pointing to nothing, pointing to something else. “One must simply refuse to go on,” Scranton writes, and the thing is: my body has already begun to refuse it, though my narrative of myself hasn’t caught up yet, and now I am left with the question, small, intimate, a flash in the pan: What next? Behind that, there is a larger question, one that guided my work in the final years of my doctorate: How does a woman tell the story of her own illness when its very reality arises out of sociocultural forces that benefit from the continued narrative of suffering as particular, individual, and unique to her, or else unique to her gender?

6. In the critical introduction to my dissertation, I trace various answers from favorite memoirists, including Audre Lorde and David Wojnarowicz, Johanna Hedva and Terese Marie Mailhot. I talk about mental ill health in the 21st century—how part of the issue of writing about sick brains perhaps emerges from the clouded nature of mental illness itself—both its obscure etiology and the reality of suffering that often occurs out of sight, hidden from the body’s surface—and how its medical and cultural histories have been entangled in the vexed, concomitant histories of gender, race, and class, to be sure, but also in that of work and leisure, art and genius, the forces of evil and divinity. I look at how public space and funding for art and literature outside of the academy has disappeared, at the same time as political elites have co-opted the emotional affect of the narratives produced by those on the margins: Here is Reagan’s silence and moral stiff upper lip throughout the AIDs epidemic. Here is the rhetoric of compassion mobilized to achieve the various ends of the George W. Bush, Obama, and, now, Biden administrations. Here is the rhetoric of rage seized upon during Trump’s tenure. I write about academia: its attempts to trace the battle lines in discussions of narratives about illness between “the dispassionate critic who is suspicious of art that elicits sympathy or empathy” and the “empathic critic who seeks to acknowledge the suffering bodies at the center of art.” I write about how this is a false divide, and yet how writers within the academy have long played up its divisions: Here are the “Deridian outbursts turned topiary” writing their cynical fragmentations. Here are the essentialized tales equating “wound” with “woman,” “sick” with “other.”

7. (What I didn’t write about then: How hard it is for me live out the in-between, how I myself am always landing hard on one side of illness narrative or the other, depending on my audience, depending on the conversation. Within the constraints of academia, I am sometimes seen as too earnest, too sappy, too much. I have learned to address this through self-editing and performed shrugs, apologies, as in my various online bios: “dubious confessional impulses, sorry.” Amongst family and friends outside of grad school, I have often been read as biting, a doomer, rigidly angry, holding people and myself to miserable standards: “Sometimes it seems like no one is good enough for you,” a friend once told me. I have learned to address this through strategic opacity, building out a private life of biting my own tongue.)

8. Scranton has built out a writing career predicated on the insights that arise from “learning to die,” but the trouble is that it’s too easy to read him as theory rather than practice. It’s too easy to read his work and forget that his writing, the narratives that he assembles, are a part of his own “learning to die,” are a part of what death taught him, when he was in Iraq both as arbiter and adjacent to dying, his own, and others—the line between “good” and “evil” more like stepping stones of banality.

9. There is something about the banality of facing one’s own mortality, own’s one long-sick body, that blurs the line between theory and practice, narrative and raw data. See Foucault again, in his last months, less concerned with dispensing of the self, instead finding versions of it appearing through ritual journal writing, a collection of found language—lines from conversations, newspapers, books—the self coming into view and cared for through a magpie’s nest of narrative detritus. “A body becomes an individual through gathering and assembling,” theorist Claire Colebrook writes, and so in this weird space between cancer diagnosis and treatment, my own becoming/unbecoming, I start new journals and build new reading lists for post-surgery days:
   Joy Castro’s Flight Risk
   Sedgwick’s Dialogue with Love
   Jessica Dore’s Tarot for Change
   Bonaventure Soh Bejeng Ndikung’s The Delusions of Care
   Annette Kolodny’s The Lay of the Land
   Mary K. DeShazer’s Mammographies: The Cultural Discourse of Breast Cancer Narratives.

10. Truth be told, I am willing to believe in both: that narrative is the enemy, and that there are practical secrets about living, knowing, and dying that narrative reveals.

11. There are practical secrets that narrative has revealed to me about my breast cancer, and as in fairytales, so far these helpful truths have arrived in threes, namely
    1) That doctors don’t want to talk about environmental carcinogens even more than they want to harp on about cancer’s etiology either as bad genes or bad luck.
    2) That far from being “under control” and “curable,” worldwide breast cancer rates are rising rapidly, especially in the Global South, with “the scope and parameters of this disease reveal[ing] a global crisis,” according to DeShazer.
    3) That the narrative of progress in breast cancer treatment is largely a lie; my treatment plan is the exact same as Sedgwick’s, when she was diagnosed with a similar type of breast cancer 20 years ago.

12. Sedgwick lived for 19 more years after her diagnosis at age 40, and as I read her partner’s account of her illness, I am struck by how those decades were rife with pain, and confusion, both the destruction of narrative and the creation of art. “Art is tied to the non-existence of man,” Colebrook writes, and like all good contradictions, the “hermeneutics of suspicion does,” in fact, serve me well as I approach the narratives of the medical establishment, my doctors, the pink-ribbon commercialization of sick breasts as sap. Still, too, I want to shake suspicion down, and, as Sedgwick herself suggests, draw “near the boundary of what a writer can’t figure out how to say readily, never mind prescribe to others.” I think of that boundary as the gap between compassion and critique, where language becomes and unbecomes, loses its body and exceeds it, lamentation as contingent practice, both in symbol, and at the same time, in symbol’s collapse.