Abstract: Focusing on the author’s solo theatre piece Bladder Interrupted: A Self-Story About Cancer, the article examines cancer performance as a ceremony of recovery for the artist facing catastrophic disease. If narrative psychology teaches that the self is constructed through stories, then performing illness stories can demonstrate how deeply the self is disrupted and rendered (for a time) a “narrative wreck.” The article traces the author’s process from writing to performance. Given that autobiographical performances of the cancer experience are by definition rendered through the traumatized body, the article reflects on the toll of repeating such stories and the desired end of telling.
Keywords: Cancer, Performance, Narrative
As I undertake writing this essay, I am days away from a series of CT scans. This is the second time doing this in the thirteen months since the end of my treatment for Stage 2 muscle invasive bladder cancer. The scans will search for the appearance of metastasis. If nothing is found, I will have another set of scans in six months. Although I have been through chemotherapy, and have had the cancerous organ and everything in its vicinity removed; although surgical pathology revealed no lymph node “involvement”; although my prognosis is “very favorable,” I will be tested for years to come. I am nervous about the scans. In the dark humor world of cancer patients, the word for this fear is “scanxiety.”
As I undertake writing this essay, I am a couple of weeks away from a series of New York performances of my autobiographical solo theatre piece Bladder Interrupted: A Self-Story About Cancer. I premiered the piece at a fringe festival and I am now bringing it to an incubator performance space in Brooklyn. These performances will be the last I will do. For, although I desired very much to bring the story of my cancer experience to the stage, I now wish to stop performing it.
“It is no small thing to have cancer—to realize you are becoming ill, to suffer that illness and risk of death, to be dying or to have returned to the living and be starting to live over again with the knowledge of your own mortality,” writes sociologist Arthur W. Frank. He continues: “It is no small thing to have your body rearranged, first by disease and then by surgical and chemical interventions intended to cure that disease. Critical illness takes travelers to the margins of human experience” (Frank 2002: 54).
The metaphor of traveling resonates for me. Living through the first year after a cancer diagnosis felt to me like a trip on Apollo 13. I traversed vast, hostile space in a hobbled vehicle, flung around the dark side of the moon on a wish and prayer, and returned via a flaming ball of fire to the golden warmth of the earth’s ocean in sunshine. As abruptly as cancer had plunged my life into disarray, the completion of treatment returned it to some sense of normalcy. I found little help for the ending of the journey. Suddenly, after months immersed in daily attention to my illness and its treatment, after the brutality of chemotherapy and a somewhat bumpy recovery from major surgery, I was finished. My surgeon considered me cured of “this cancer” (not “cancer,” but “this” cancer). My oncologist said he would not need to see me again unless something “showed up.” The staff in the urology practice were indifferent to me when I called—not unfriendly, but I was forgotten. That made sense, of course; my treatment had receded into their past by days, and then months, and a steady flow of new patients had taken my place. I felt at sea and oddly depressed. So, I created theatre.
I view Bladder Interrupted as a “ceremony of recovery.” The importance of such ceremonies by which patients can mark the transition out of illness should not be underestimated. Modern medicine excels at beginnings. Like a crisis drama, it seizes the stasis that was life until that moment and proceeds with its disruption at full speed towards its climax. One can go from unnerving symptom to chemotherapy to major surgery with surprising swiftness. The great machinery of diagnosis, consultation after consultation, tests and more tests, scans and more scans, moves patients quite efficiently through its complicating system.
But medicine typically treats endings with unceremonious send-offs. People who have survived catastrophic illness are left to create endings for themselves. Perhaps, the ceremony of recovery revolves around a final or definitive scan, a NED (“no evidence of disease”) diagnosis, or, perhaps, the removal of a chemotherapy infusion port. Creating autobiographical theatre functioned for me as such a ceremony, as a rite of passage through which I could assert that “life can begin anew” (Frank 2002: 129).
By definition, however, ceremonies and rites have endings; once achieved, they are done. There’s a wealth of scholarship on the theory and practice of autobiographical performance, a genre which often includes illness stories. Peggy Shaw’s story of her stroke in Ruff (2013) and Eve Ensler’s harrowing tales of her experience with ovarian cancer in In the Body of the World (2018) are just two recent examples.
Illness stories are tremendously potent for performer and audience. They are sites of convergence for expressions of identity, subjectivity and theatricality. They give voice, bear witness, shape communal knowledge and enlighten and move audiences. They are particularly important as a means of expression for the silenced voices of women’s and other marginalized experience. Less is said, however, about how and why we might stop telling the story. There is a toll for the telling, I believe, and that fact begs some attention.
On Becoming a Narrative Wreck
Cancer patients are encouraged to write. Writing journals, blogs, poetry or just lists is a form of writing therapy. Writing can help us engage with our fears, parse out the confusion of learning new information, help us process a mountain of questions and provide a means to reflect on what is going on around us and about us. In Reading and Writing Cancer, Susan Gubar offers a guide to writing about cancer. She offers provocative prompts, such as “remember the moment of diagnosis or of telling a sibling about it,” or “visualize what your cancer or your fear looks like” (Gubar 2016: 24).
Writing about my illness began for me as a practical solution. Very soon after I was diagnosed and took a leave from my university position, I registered on a social media website designed to connect the ill and their caregivers to colleagues, family and friends via profile pages, journal entries, calendars, etc. As a communication tool, this semi-public journal, like other forms of social media, was useful to me as a way to keep up daily with those people who cared about my diagnosis and treatment, and to do so without having to take too many phone calls or respond to inquiries about my status. It allowed others to discover my diagnosis without my having to do the retelling.
In retrospect, the journal entries I made over months on the site are quite interesting, but not surprising. They are, on one level, informative. They contain the details of my diagnosis, the decision about chemotherapy, reports on the progress of my treatment. They include the occasional call for assistance. While I was in surgery, my family posted regular updates. I announced my progress as I recovered from surgery and posted the details of my prognosis. Then, one day, I stopped. As a public journal (albeit for a limited public), my entries read in retrospect like a how-to guide for putting on a happy face. I was reassuring others as I was reassuring myself. I posted when the going was good; rarely when it was bad.
After my surgery, while enduring bouts of pain and having other recovery issues, there is only silence. In other words, I was keeping up appearances. “Two kinds of emotional work are involved in being ill,” writes Frank. The first is when “the ill person, alone or with caregivers, works with the emotions of fear, frustration and loss and tries to find some coherence about what it means to be ill. The other kind is the work the ill person does to keep up an appearance. This appearance is the expectation that a society of healthy friends, coworkers, medical staff and others place on an ill person” (Frank 2002, 64).
Having assimilated expectations of strength and wellness, I shaped for my readers (and, consequently, for myself) a narrative of survival and hope. The pain and terror of chemotherapy was rendered as passing and endurable discomfort. My future was optimistic. The content of these entries was similar to those I posted in two other venues in which I wrote about my cancer: a support forum and a blog. I joined a discussion forum for bladder cancer patients and posted numerous entries in that first cancer year. These are rather equally divided between requests for advice, offers of support and reports on my “progress”—the latter displaying a marked aversion to any negativity. I carried this attitude into a blog, where, again, the takeaway is triumphant. In sum, my entries on social media, the support forum and blog are simultaneously archival and performative.
More aspirational than journalistic, my entries constitute vivid written evidence of an attempt to perform a version of my experience that is orderly and positive; I created a narrative of containment and presented a vision of my illness as ultimately surmountable. With a body damaged and out of control, I limited the story to safer parameters. I created a discursive performance of victory over cancer even as my body suffered. I formed a narrative of coherent subjectivity—“I’m still the same old me”—even as my diagnosis of cancer had torn me apart.
Like the imposing monumental libraries that hide the ineluctable disorder of archives, tidy discursive presentations of the cancer experience mask a chaotic reality. Those on the receiving end of a cancer diagnosis are faced with an explosive psychic disruption of the narrative coherencies that constitute the self. As narrative psychology has shown, selfhood is a process of narration. Theories of narrative identity understand that self-stories are not merely expressive about, but constitutive of, selfhood. Books like The Wounded Storyteller and others in the fields of psychology, autoethnography and social theory view illness as matter of narrative breakdown (Frank 2013; Anderson 2016).
If lives are stories, cancer forces new versions of our tales. Put in my own words, what I lost when I was diagnosed were the narratives I knew so well: the stories I told myself of a life moving forward, of plans and futures, of “what I will do when I retire.” Cancer destroyed that narrative and left me searching another to build on the wreckage. At first, I lived on snatches of borrowed narrative, in which what I could say about myself was dictated by surgeons and oncologists. I stumbled along, knitting new stories little by little with each disclosure, with each “How I Found Out I Had Cancer,” with each “What Stage I Am.” Confused and groping. I was, in so many words, a “narrative wreck” (Frank 2013: 53-4).
Nothing becomes a narrative wreck like performance. Performance is always the site of its own undoing. Whatever apparent coherence exists in the most convincing representational systems is undermined by the phenomena of bodies, voice, space and time. What does not belong in the system is always knocking at its gates, unraveling the threads that are so neatly sewn up by elaborate stage sets and well-made plays (States 1987).
In the transformation from writing to performance, the narrative coherency and singularity of self that I managed to construct via digital venues fell apart under the prismed eye of performance. When I undertook to mine that “happy” written archive to create theatre, I found coherency falling apart like overripe fruit: my stories of self were challenged, dissipated and ironized. I subjected my earnest, brave front to scrutiny and discovered great humor coexisting with misery. Over the months of developing Bladder Interrupted, I learned experientially what I had read in theory: that the disruption of illness is the disruption of coherent stories.
Embracing the idea of self–narrative chaos, Bladder Interrupted: A Self-Story About Cancer is constructed as a series of ten disjointed personae in different narrative positions. It provides an account of the “high points” of my cancer ordeal (diagnosis, chemotherapy, surgery, etc.) by using various storytelling idioms familiar through popular performance formats. The introductory episode, for example, was rendered as a parody of bad spoken word:
I’m wearing an artificial bladder.
I know you’re thinking …
WOW, is she going to show it to us?
Of course, I’ll show it to you,
this is a Fringe Festival.
[M unzips her pants and reveals her ostomy bag]
Here it is:
My artificial bladder.
My prosthetic bladder.
My urostomy bag, man.
Or, as it’s known in the medical supply business,
as if the thing were
or, a COFFEE GRINDER
or, an IMMERSION BLENDER.
A twisted take on a library story hour for children is the mode for telling the tale of how I discovered bladder cancer. “Fairy Tale” book in hand and to the accompaniment of an eerie music box tinkle:
Although of late she had been working on mindfulness, especially around everyday tasks like brushing teeth, she hadn’t yet brought that particular skill to the ritual of voiding. So, it wasn’t until she almost hit the flush lever that she noticed that the toilet bowl was . . . Gasp! Filled with blood!!
Oh, confusion! So many thoughts ran through her head. Is tha—? Could it be—? No that’s impossible. Did I—? But what about—? I’d better check. She quickly assessed the possible sources for this crimson effusion, all the time thinking that any one of the three would not be good news. The professor, using all her mental resources, narrowed down the culprit to just one source: she was peeing red!
Other storytelling idioms I used included a Moth-like open mic story/confessional about embarrassing bathroom sounds, a podcast episode about chemotherapy, a college psychology course lecture on cancer self-help books and a continuing education presentation to “Life–Long Learners” about radical cystectomy and urinary diversion surgery, something I declared in folksy demonstration mode to be the one of the “Wonders of Modern Medicine”:
The urine goes from the kidney through the ureter and into the bladder, illustrated here by this big potato, decorated for your pleasure [M takes out a bigger potato, this time adorned like a Mr. Potato Head]. See how the three parts are connected? You got your kidneys, you got your ureters, and you got your bladder. Now, imagine that the bladder is diseased, cancerous. Natr’lly, you’d think, “Can’t they just cut that tumor off the bladder—like taking the eye off a spud?” No siree bob, ladies and gentlemen. Because once a malignant tumor has burrowed its way into the lining of your bladder—bladder cancer usually starts on the inside of your bladder—that bladder is ruined. So, goodbye, Mr. Potato Head Sick Bladder! [M triumphantly throws Mr. Potato Head away.]
The use of my urinary prosthetic was rendered as though a local cable cooking show, hosted in cheery manner in full Long Island accent:
Heya we have your basic urostomy bag. There is a big hole on this side where the stoma goes and, on the back, you got lots of glue to make it stick to your belly, just like a big band aid! You leave it on your body for three or four days. You can shower with it, you can bathe with it—you can even swim with it! Believe me, you will be more continent that most people in that pool. If anyone give you trouble, just point to the three–year–old in pampas.
Now, when your bag is full, every few days, there is this handy spigot right here on the end, just turn the switch to empty it into the bathroom bowl. Now ladies, I have found that the best position to do this is standing up. [Thinks] But be careful about doing that in public restrooms in North Carolina. Or Kansas.
The penultimate episode featured a torso puppet in which my kidneys discover to their horror that they are part of a newly designed urinary system featuring the intestines.
Humor is the prevailing mode for many, but not all of the episodes. I offer a more serious take in the podcast episode, in which the audience sits in near darkness listening to recorded account of my weeks on chemotherapy and brooding thoughts about the friends I have lost to cancer and my visions of a hospice room. In the psychology course lecture, I suddenly drop the attitude of the expert professor and disclose to my student/audience my fears, my frustration with advice, and the strain of trying to be an “extraordinary” cancer patient. Bladder Interrupted ends with a phone call from my surgeon-oncologist and my views on cancer storytelling as an alternative to the cancer warrior.
Body on the Line
Writing on Linda Park-Fuller’s autobiographical work about breast cancer, Making a Clean Breast of It, M. Heather Carver says that “the audience is witness not just to her story but to the live body that has been through a battle with breast cancer” (Carver 2003: 27). This is the essential fact of illness stories in performance: that the body that has been through story is the story. As both the identity and the ineluctable presence of that body, autobiographical performance is a multivalent signifier. The body in performance signifies in two ways, or “orders,” according to Susan Bennett. First, as simultaneously a social- and self-constructed identity,
not primarily the identity that the writer constructs for him–- or herself as the autobiographical project, but the identity that is a production of the body’s exteriority. In its three-dimensionality, the body is not, ever, simply those identities it claims for itself, but also those identities claimed on its behalf.
Secondly, she says, the body is an archive, “the literal vessel of a somatic history” (Bennett 2006: 35). This point about dual signification is crucial. As performer, my body is not only the vehicle for the internalized and externalized identities I control—never entirely—as storyteller, but my body is also the story itself. And on that last point is the rub. I learned that cancer involved a level of unprecedented exposure of my body through the process of chemotherapy, surgery and hospital stays. My body was marked (literally, in some instances, with a marker pen) by nurses and doctors and oncologists and radiologists; there was the implantation of an infusion port, the post-surgery assessment of my pelvic floor and matter-of-fact conversations about vaginal walls and clitoral nerve bundles. This moved me into a space of physical vulnerability that I had never felt before. Writing about it permitted a controlled and distanced view of the experience, but, in performance, my bodily presence made it deeply and unavoidably real. To whatever extent my story bears witness to the experience of cancer, it was my body, from skin to neural pathways, that was subjected to repeated acts of telling through each performance. Subtly but surely, I felt retraumatized.
Even as we celebrate the intervention of autobiographical performances to expose and bear witness to the experiences of illness, perhaps we should also ask: what is the toll of autobiographical performance on the performer? What is the price of repetition, and is it worth it? Creating Bladder Interrupted was a liberation, my “ceremony of recovery”; writing it and performing it gave voice to my experience. Continuing to perform it, however, forced me to engage somatically beyond the point of efficacy. As a ceremony of recovery, performance is potent. But, like other rituals, it should not be unnecessarily prolonged.
 Written and performed by Mechele Leon, devised in collaboration with director Theresa Buchheister. The piece premiered July 22, 2017, at the Kansas City Fringe Festival. The performances referenced here are to October 20–22, 2017, at Vital Joint, Brooklyn NY. See oakmarrow.com for more information. I am grateful to the members of the 2017 ASTR working group led by Vivian Appler and Meredith Conti for the opportunity to receive feedback on an early draft of this essay.
 In the Body of the World, written and performed by Eve Ensler. Directed by Diane Paulus. Produced by the American Repertory Theatre and performed at the Manhattan Theatre Club, January 16 to March 25, 2018. Based on her book. Another of many examples in this genre is Ruff, performed and co-written by Peggy Shaw, directed and co-written by Lois Weaver.
 Frank adopts the term “narrative wreck” from Ronald Dworkin, Life’s Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom (New York: Knopf, 1993).
Anderson, Patrick. Autobiography of a Disease. New York: Routledge, 2017. Print.
Bennett, Susan. “3–D A/B.” Theatre and Autobiography: Writing and Performing Lives in Theatre and Practice. Ed. Sherrill Grace and Jerry Wasserman. Vancouver: Talonbooks, 2006. 33-48. Print.
Carver, M. Heather. “Risky Business: Exploring Women’s Autobiography and Performance.” Voices Made Flesh: Performing Women’s Autobiography. Ed. Lynn C. Miller, Jacqueline Taylor and M. Heather Carver. Madison: University of Wisconsin Press, 2003.15-29. Print.
Claycomb, Ryan. Lives in Play: Autobiography and Biography on the Feminist Stage. Ann Arbor: University of Michigan Press, 2012. Print.
Ensler, Eve. In the Body of the World: A Memoir of Cancer and Connection. New York: Metropolitan Books, 2013. Print.
Frank, Arthur W. At the Will of the Body: Reflections on Illness. New York: Mariner Books, 2002. Print.
Frank, Arthur W. The Wounded Storyteller: Body, Ethics and Illness. 2nd ed. Chicago: University of Chicago Press, 2013. Print.
Gubar, Susan. Reading and Writing Cancer: How Words Heal. New York: WW Norton, 2016. Print.
Leon, Mechele. Bladder Interrupted: A Self-Story About Cancer. Premiered July 22, 2017, Kanas City Fringe Festival.
*Mechele Leon is a theatre director, scholar and educator on faculty at the University of Kansas, where she directs and translates plays and musicals. As a scholar, she specializes in French theatre. Her book Molière, The French Revolution, and the Theatrical Afterlife is a winner of the Barnard Hewitt Award for Outstanding Research in Theatre History. She recently published the anthology A Cultural History of Theatre in the Enlightenment. Bladder Interrupted: A Self-Story About Cancer is her first solo performance piece.
Copyright © 2018 Mechele Leon
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