Illness is an interruption to the story of the self. As a narrative species, we often understand our day-to-day lives in terms of story, but with the onset, diagnosis, and treatment of illness, the disruption of those stories can easily fall into what Arthur Frank calls “the chaos narrative” in his seminal book, The Wounded Storyteller. “Somehow the stories we have in place never fit the reality, and sometimes this disjunction can be worse than having no story at all” writes Frank (55). In his analysis, the interruption of illness leads to a state of chaos that resists our ability to narrate it meaningfully because that chaos resists narrative order: “The lack of any coherent sequence is an initial reason why chaos stories are hard to hear; the teller is not understood as telling a proper story” (Frank, 97).
That I will be pushing back on Frank doesn’t mean that his framework in The Wounded Storyteller wasn’t useful. At the time of its publication, our ideas about stories and illness were less well-developed as a strategy for our well-being. However, Frank can be limiting, in the ways he talks about narrative structure, where he hews to traditional Western ideas. “Western narrative embodies Western dialectical thinking: thesis and antithesis, conflict is resolved by synthesis” (Donnelly, 8).
Chaos, in particular, flummoxes Frank. “If chaos stories are told on the edges of a wound, they are also told on the edges of speech,” he writes. “Ultimately, chaos is told in the silences that speech cannot penetrate or illuminate” (Frank, 101). Among the dissenters to Frank’s ideas about chaos is Colleen Donnelly, who writes, “Chaos narrative emerges as a challenge to the prescribed norm for illness and conventional narrative, refusing to conform to traditional forms that demand a narrative end with restitution or with the narrator-hero’s transformation and delivery of the inspirational or educational boon-message to the audience” (7). Not only does Donnelly reject the idea that chaos narratives should be judged by other kinds of illness narratives, most notably restitution narratives and quest narratives, but she also takes to task the audience for these narratives and their motives. Rather than centering the ill person, restitution and quest narratives satisfy the desires of the audience, specifically the expectation that illness narratives must be transformational or inspirational.
Those of us who write about chronic illness will recognize these desires from audiences who often want transformational and/or inspirational stories, an unrealistic expectation to place on a narrator who is negotiating illness, especially those whose condition is chronic and, therefore, will never fully be restored in the classical sense of “returned to wholeness.” When grappling with a chronic illness, traditional narratives don’t work because, by definition, the illness experience remains ongoing. With their lack of restitution or resolution, these stories of chronic illness are not a vehicle for meaning-making in the traditional sense, which is narrative resolution. I can consider the ways in which my own condition changes but does not resolve itself. As a forever patient of chronic disease, I find myself in a loop where what I desire most is expression beyond restitution and without an audience’s stubborn expectation that I educate or inspire them. That they be moved might be my only objective, an approach to narrative that may, in fact, embrace chaos: “Chaos narratives record the flow of experiences as the narrator navigates those challenges and continually (re) defines the ever-changing ‘self.’ In doing so, a chaos narrative emerges that demands not to be silenced” (Donnelly, 9). In this way, we could see chaos as offering only voice, that is, language, experience, and feeling, but without shape.
Brian Terre, writing about illness, also critiques Frank’s approach to chaos: “Frank seems genuinely freaked out by so-called chaos. In his account chaos strains the limits of caregiver empathy and institutional capacity because the chaotic body is nonnarrative—which, for Frank, is in effect to be a non-self, one who cannot effectively communicate or connect with others” (110). In thinking about Terre’s questioning of Frank’s approach to chaos, I see two arguments emerging. One is to think about how to make nonnarrative meaning. Could we, for instance, consider a form like nonnarrative poetry to be a vehicle for voicing chaos? Is the chaos story one that demands a less traditional narrative structure? We might also consider non-language based artistic forms, of course, but that would deserve its own investigation.
For the moment, let’s set aside nonnarrative linguistic forms, and examine whether there are other narrative shapes that exist which would be a more amenable match to the chaos of illness. Jane Alison offers interesting ideas about narrative form in her book Meander, Spiral, Explode: Design and Pattern in Narrative. Alison acknowledges that the central story arc or “wave” pattern has dominated our ideas of storytelling since Aristotle, who recognized it in his dissection of tragedies (Alison, 9). Still, calls it an “elegant structure,” that “can create powerful narratives” (21). However, Alison finds it curious that this one form has shaped most of our subsequent ideas about story structure, perhaps at the expense of other valid forms.
The structure of story arcs fits neatly with Frank’s restitution and quest narratives: “Beginning, middle, end, complication, change dénouement” (Alison, 10). But where Frank’s definition of illness narratives that “work” begins and ends with this basic structure, Alison sees the wave as simply a jumping off point for a variety of narrative patterns. She postulates that “it might be more freeing, as writers, if we think not of a story always following an arc, but of a reader’s experience of doing so. A tentative entry leads to greater involvement until the words stop and you’re back in your own world” (Alison, 21). This arc need not be the only narrative form that can shape reader experience, according to Allison. In fact, she explores other narrative structures that might be used to understand story:
“Essayists speak of spiraling form in reflective personal pieces; reflective, lyrical novels might do the same. A radial narrative could spring from a central hole—an incident, pain, absence, horror—around which it keeps veering, but scarcely moves forward. A fractal narrative could branch from a core or seed, repeating at different scales or dynamic of that core, possibly branching indefinitely. And cellular narratives come in parts, not moving forward in time from one to another but creating a network of meaning” (23).
In these structures, we begin to tease out how Frank’s unruly chaos might be better served by other forms, those less preoccupied with “making meaning” out of chaos. Rather than seeing chaos as anti-narrative, we can see it as one of Alison’s alternate narrative structures. For instance, a radial narrative might be particularly useful in creating a meaningful narrative about the pain caused by an illness, since pain can serve as a central hole from which a radial narrative emanates. The movement is not forward, but rather tightly circles the central incitement. Likewise, when one considers how Frank views chaos as having a lack of restitution, one might consider fractals, a form which can branch endlessly. Most importantly, by looking at new patterns and structures for chaos narratives, we provide a service to patients for whom a traditional arc narrative form may seem out of reach and out of touch with their experience. As Terre aptly reminds us, “becoming ill was never a call to story” (119).
It may also be of service for those grappling with illness to look expressly at nonnarrative forms. Poetry and visual art may be a meaningful-if-not-narrative tool that patients can use to express their experience with illness. I recall a palliative care physician sharing with me a collage made by a patient who experienced terrible pain from arthritis in the knee. The collage was made of thin, jagged strips of magazine text, jutting out at all angles. The feeling was easily recognized, absorbed, and interpreted, as the discipline of narrative medicine would ask of us, skills that can be applied beyond narrative, as in this case of collage and its artist. Similarly, while putting together the anthology Bodies of Truth: Personal Narratives of Illness, Disability, and Medicine, one of our contributors related the story of receiving a letter from an aphasia patient, one that begins, “Dear Dr. Lie” and while not adhering to a clear narrative structure, the neurologist, reflecting on this patient who he encountered during residency, commented, “I was struck by the poetry and the rhythm of the letter” (Smith, 21). He further comments that the patient had lost her “grammatical voice” but that it was replaced by this new one, which conveyed distress and urgency, and, as he writes: “A voice that was able to convey the confusion and frustration perhaps better than a typical essayist could, with her right brain now free to express her feelings in a poetic way” (Smith, 21).
Consider for a moment Tony Hoagland’s poem, “A Color Of The Sky,” which, in its investigation of memory asks us:
What I thought was an end turned out to be a middle.
What I thought was a brick wall turned out to be a tunnel.
What I thought was an injustice
turned out to be a color of the sky.
In Hoagland’s poem, we are not plopped into a narrative, yet the poem remains contemplative. Here, the poetic form is used to mirror the associative process of memory, the way it can change and morph over time. The repeated “what I thought” suggests something greater than the original place or object, so that an end becomes a middle, a brick wall becomes a tunnel. We follow an emotional logic, not guided by the rules of story, and in doing so, we see the malleable and mutable way experience can be remembered. Could such an approach help those expressing the chaos of illness? Certainly, the glut of poems about illness that are not strictly narrative would suggest so. David Budbill’s poem, “A Poem About Pain” enacts this focus on a moment, specifically rejecting anything but pain itself:
When the pain you’re in
is so great you can’t think about or pay attention to anything
but your own pain, the rest of the world and all other life
don’t matter.
These lines seem to expressly counter Frank’s notion that the chaos of illness is antithetical to meaning because it doesn’t follow traditional narrative structure. In poetry such as this, meaning is expressly anti-narrative because pain doesn’t allow for resolution, only for itself.
These are but a few examples of how meaning can be achieved beyond narrative structure, whether it be through Alison’s ideas about alternate narrative structure or through forms that are completely nonnarrative. To fully embrace and support individuals who are in the throes of chaos because of illness, we need to investigate these other forms of meaning making. As Terre reminds us, “Narrative medicine cannot only listen to the stories it wishes to” (119). Perhaps, instead of worrying about audience expectations—restitution, resolution, education, epiphany, inspiration—we, as practitioners of narrative medicine, should focus on the voices, and then the vessels for the lived experience of those voices. For such an embrace is not only more inclusive to those experiencing illness; it allows us to grow in our understanding of patients who seek to express that which otherwise defies expression.
Works Cited
Alison, Jane. Meander, Spiral, Explode: Design and Pattern in Narrative. New York: Catapult, 2019.
Budbill, David. “A Poem About Pain.” Poetry Foundation, <https://www.poetryfoundation.org/poems/147692/a-poem-about-pain>.
Donnelly, Colleen. “Claiming Chaos Narrative, Emerging From Silence.” Disability and Society, vol. 39, no. 1, 2024, pp. 1-15.
Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. Second Edition. Chicago and London: University of Chicago Press, 1995.
Hoagland, Tony. “A Color of the Sky.” Poetry Foundation, <https://www.poetryfoundation.org/poems/42595/a-color-of-the-sky>.
Smith, Matthew. “One Little Mind, Our Lie, Dr. Lie.” Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine, edited by Dinty W. Moore, Erin Murphy, and Renée K. Nicholson, Lincoln and London: University of Nebraska Press, 2019, pp. 20-22.
Terre, Brian. “Neither Chaos Nor Quest: Toward a Nonnarrative Medicine.” Boston Review, Winter 2022, pp. 108-119.
