Greetings from silent, snowy Chicago. Earlier this week, in response to a social media prompt posted by another writer, I agreed to answer some questions about my experience with breast cancer diagnosis and treatment. The questions were thoughtful and surprising, and I’m still thinking about them days later. One of them in particular has proven sticky, and I’m going to try to unpack it a bit more here.
The question had to do with tropes of Western illness narratives as defined by sociologist Arthur Frank in The Wounded Storyteller, a book I have not read but now have on hold at the library. I’m paraphrasing third-hand here, but the narratives are, loosely:
The restitution narrative: You get sick, you go to the doctor, you are cured. This is, basically, the narrative of modern medicine. In this narrative the doctor – thanks to their mastery of science – has the agency, and can be seen as the hero.
The quest narrative: In this narrative the patient is the hero. You get sick and take on the responsibility of seeking treatment, making good choices, and ultimately surviving thanks to your own agency – and you are transformed by the journey.
The chaos narrative: There’s no hero. There’s no doctor-savior and no clear choices for the patient. It’s all a random, inexplicable pull of the tide through which you can only try to keep swimming but you might well still die anyway because sorry, shit happens.
But asked which, if any, of these narratives resonated with my experience, I was kind of stumped. They all ring true to some degree, I wrote, but none absolutely, and no one more than another. I am the only phenomenologically possible hero of my “journey,” but doctors and their technologies are not my antagonists. I see them as useful helpers who have skills and knowledge I do not, and whose extremely expensive expertise I haven’t had reason to doubt – so far.
As I’ve written before, I was not terribly proactive about my cancer treatment plan. I didn’t shop around for doctors; I went where I was referred and when I found out that my acupuncturist had been treated for breast cancer by the same surgeons I had been assigned to, I talked to her and she said they were great. That was good enough for me, and I haven’t had cause to regret it. Is that an adequate expression of agency? Perhaps.
Each narrative is so culturally coded. I know that the modernist narrative is bad, right? We’re not supposed to see doctors as heroes; we’re all too sophisticated, too empowered, too skeptical for that. But what of the patient as hero? I intuit this is the model to which we should aspire, but it also reads, to me, like the narrative of American individualism – something I’ve been trained to distrust. Susan Sontag, writing about tuberculosis, cautioned against the romantic tendency to see those afflicted as elevated, made more interesting by their illness. Writing in the 1970s, she didn’t think cancer could ever convey the same glamor to its twentieth-century sufferers as TB did in centuries gone by, but that was before cancer TikTok, or the startlingly widespread incidences of cancer fakery. Despite my apparent graphomania, I cringe at the thought of framing this ongoing, confounding experience as a hero’s journey. In the words of Dieter Dengler, heroes are the ones who are dead.
The chaos narrative — which I may be willfully misreading — seems on its face the truest to my Gen X roots: absurd, existential; a little nihilist, a little Buddhist. It surges underneath the tidier storylines all the time. But it also offers the least to hold on to. What to do when I feel the need for some support from a story arc? Anne Boyer railed against the tyranny of pat cancer narratives in The Undying, but her searing disdain leaves me shamed. Does longing for sense make me weak?
I am sure I am getting this all wrong. I haven’t read the book! But hey – why let ignorance stop my speculation? Surely all three narratives co-exist in individual experience? Sometimes in harmony, sometimes in conflict, each strand of the braid rising to dominance and then falling, subsumed beneath the others as they ascend to the top.
I’ve been poking around a bit in the world of medical humanities (after making the dire mistake of creating an account on academia.edu), and discussions of the role of narrative and storytelling in illness are foundational to that field, a key component of contemporary efforts to rescue medicine from its inhumane twentieth-century tendency to see patients as clusters of symptoms rather than as people. But in an article titled “Beyond the Wounded Storyteller: Rethinking Narrativity, Illness, and Embodied Self-Experience,” Angela Woods makes space for the possibility of experiencing illness outside of narrative, writing:
Narrative does not have a monopoly on expressivity. Although many people do not believe themselves to be artistically gifted or particularly creative, medical humanities researchers and arts-in-health practitioners have shown that experiences of distress and of physical vulnerability can be brought to life and given shape in a wide variety of media.
Speaking as someone who just signed up for a six-week ceramics class, I appreciate this. And, in a more serious vein, what resonates most about this take on the role of narrative in understanding sickness and the self is that it does point towards other modes of knowing that are less linear, less self-centered, and perhaps more beautiful. Woods wraps her paper up by kicking it to two other thinkers, Christian Sartwell and Sara Maitland, whose autobiographical A Book of Silence: A Journey in Search of the Pleasures and Powers of Silence is now also on my reading list. Both, she writes:
…challenge the assumption that narrative, and even speech, is as desirable as it is inevitable. Their work stands as an invitation to attend to what cannot be spoken; to embrace silence [or the absence of language] as a part of life that is open to contingency and randomness, but also ecstasy and intensity; to resist the impulse to mistake narrative for life.
I’m supposed to start taking tamoxifen in a few weeks, ostensibly for the next five years. This drug is an estrogen blocker that will ostensibly help minimize the chances of my estrogen-hungry cancer recurring. It is extremely common; if you know someone who has had breast cancer, it is likely that they are taking it. But while my body’s excellent response to treatment so far has everything to do with my generally positive feelings about modern medicine, after reading up on this drug’s side effects (hot flashes, joint pain) and hearing about them from miserable friends, I’ve got a hunch this next chapter in my own illness narrative may put me more at odds with the doctor-heroes. And even if Darcy Steinke, in a book I really loved, found transcendence in her hot flashes, I’m skeptical that they will somehow add new meaning to my own hero’s quest. Right now chaos dominates the braid — but I’m fighting its tidal pull. Instead, I think I’d like to try foregoing narrative sense for a minute and, instead of drowning, see if ecstasy might indeed flower.
I also really love Ann Jurecic’s book Illness As Narrative, which you might enjoy/get a lot out of!
Wow, we really are quite literally on the same page recently! I was just rereading my copy of Louise DeSalvo’s Writing As A Way of Healing, at the end of which she delves into (and also somewhat troubles/deepens) Frank’s concepts of the restitution, chaos, and quest narratives. Anyways! Loved hearing your thoughts on and experiences with this in light of your own diagnosis and treatment.