“Questing” Illness in My Journey Through Cancer

Kaustabh Kashyap explores the narrative strategy of “questing” illness in the Indian illness memoir My Journey Through Cancer and discusses the need for a more culturally nuanced and socially situated medical humanities.

“Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it.”

Hustvedt 2009, 6

Writing illness

Since the late twentieth century, there has been an outpouring of autobiographical accounts of illness and disability in Western literature. Thomas Couser (2009) has traced this phenomenon to the memoir boom of the 1990s, when many individuals began writing first-person narratives about their physiological and psychological conditions. Such narratives often critique the normative medical discourse that exhibits a tendency to treat people with illnesses and disabilities simply as patients to be fixed. The onset of Covid-19 has also aided in the production of such accounts, while seminal texts like Daniel Defoe’s A Journal of the Plague Year (1722) and Albert Camus’s The Plague (1947) are being reread through the topical crises engendered by this pandemic (see Sim 2023; Kaplan and Marris 2022). Although Covid-19 reveals illness to be our common connection, its experience is deeply nuanced, based on specific sociocultural and material conditions.   

Tracing the trajectory of one’s corporeal issues in literary form may not seem novel in the West, since “by the late twentieth century, illness and disability narratives were established as literary genres” (Jurecic 2012, 2). But it certainly is in the Indian context, where there is a lacuna in the area of published, personal accounts of illness. Indeed, the country has borne witness to “a historical lack of authorship by disabled people themselves” (Islam and Jana 2023, 210). Lack of education, societal stigmas and cultural differences often act as hindrances to comprehending and narrating one’s story. Likewise, one might feel uncomfortable in publicly addressing such a sensitive issue. Nevertheless, with “the development of the life narrative genre in India over the last three decades, the concurrent emergence of the disability rights movement, a tremendously enlarged reading populace, and more numerous methods of publication than ever before,” disability and illness life-writing is starting to find a foothold here (Islam and Jana 2023, 210). Irrespective of geographical specificities, such writing comes “from inside the experience in question” and therefore enables a self-reflexive dialogue between one’s condition and the prevailing sociocultural and medical norms (Couser 2009, 7).

Transcribing one’s embodied experience, especially in the face of grave and terminal illness, involves complex engagements with literary tropes and narrative strategies of exploring questions of selfhood. Such writing explores one’s agency in navigating the corporeal condition and also lays bare the limits imposed by the body. While Couser’s (2009) analysis of this genre of writing, which he terms “autosomatography,” has yielded astute observations pertaining to the West, he does not “engage with memoirs written by working-class people and women of color” (Day 2019, 186). This is where a text like My Journey Through Cancer (2022), written by noted Assamese academic and author Srutimala Duara, could provide a necessary counterpoint to illness memoirs published in the West.

The “quest” of illness

As Duara’s close friend Rakhee Kalita Moral, a renowned Assamese academic working in the field of northeast Indian literature, remarks, Duara starts chronicling her experiences from the very day she was diagnosed with ovarian cancer (Duara 2022, Foreword). Duara tells the reader, at the outset of the text, that she sees her illness as a journey and seeks to share the lessons she learns about corporeal fragility, of inhabiting a body that no longer feels like home. In doing so, she elicits the tropes of the quest narrative, proposed by Arthur Frank in The Wounded Storyteller (1997). In such stories, the ill person tries to take charge of their illness by “searching for alternative ways of being ill” (Frank 1997, 117). Frank builds upon Joseph Campbell’s framework of the mythic journeys of the archetypal hero, found in The Hero with a Thousand Faces (1949), to read the narrative arcs found in the stories of ill people. Using Campbell’s theory as an analogy, Frank studies the ill person’s biopsychosocial voyage and identifies a threefold structure to the narrative framework found in the stories of questing illness. In such stories the person initially denies the symptoms of the body, but eventually prepares themself to face the inevitability of suffering.  Later, the person returns without illness, but its marks remain, allowing them to share lessons coming from the erstwhile body of alterity.

In My Journey Through Cancer, Duara navigates her illness within the Indian healthcare system and also sheds light upon the personal ties and sociocultural norms which dictate how her condition is received by her family and friends. However, Duara’s narrative modifies the conventional trajectory of the quest narrative. According to Frank (1997), a patient usually refuses to acknowledge the signals of the body and only decides to accept and face the condition when it becomes impossible to overlook it; whereas Duara decides to seek medical help soon after she feels discomfort while breathing. Indeed, she has a chest X-ray and a sonography carried out on the day of Saraswati Puja. This is a break from her usual annual routine of celebrating this Hindu festival, which marks the transition from winter to spring, and is an important event for several educational institutions in India. Even before her doctor breaks the news to her, Duara remarks, “Don’t hide anything. I know it’s cancer” (Duara 2022, 10).



From the very outset, Duara chooses to be cautious about her health and accepts her predicament much quicker than the usual trend Frank identifies in quest narratives. This does not imply that Duara is not in shock or in acute grief, but she shows a stoic acceptance of her diagnosis. When her friend texts her saying, “Why, why you?” (Duara 2022, 41), Duara thinks differently and asks why she should not have been chosen. By shifting “outward through the webs of interpersonal significance that bind a person to the social world” (Kleinman 2020, 62), Duara curbs the impulse to sketch a solipsistic account of her trauma. Without ascribing any metaphysical blame for her existential crisis, she focusses on composing a dialogic bricolage, interweaving her personal story with the familial, sociocultural and medical narratives that interact with her.

Duara follows a journalistic writing style which allows the reader easy access to the story. She informs the reader that her story could “help people who take life for granted with the belief that cancer happens to others, not to them” (Duara 2022, Foreword). She wades through the corridors and conversations of the Indian healthcare system, discusses the support offered by her family and friends and presents the ebb and flow of her own emotions. As she moves from her home state of Assam to India’s capital, New Delhi, for treatment, she gains further awareness about ovarian cancer and the complicated and invasive medical procedures associated with it. She listens to the stories of other patients who have been in similar situations, makes concessions with the indifferent behaviour of the medical staff, and appreciates their efforts when they empathise with her.

Caveats imposed by the ill body

My Journey through Cancer could have been a generic quest narrative, as Duara explicitly talks about battling cancer and coming out victorious. But ambivalence and tension creep into the narrative to the extent that, at one point, she remarks, “Now I count my days as Pain, No Pain, Less Pain” (Duara 2022, 83). Although, after a gruelling period of intense chemotherapy, she is eventually cancer-free, the disease returns following the submission of her manuscript to the publisher. It is almost as if the narrative structure of framing illness as a quest is unable to contain the ontological precarity of the body. Chaos engendered by the ailing body evades the spatiotemporal structure imposed by narrative. The framework of the quest is unable to restrain the body when restitution is unlikely. Duara passes away shortly after the publication of her book, revealing a tragic truism about the fragility of our bodies over which writing cannot triumph.

Duara leaves us with few crucial observations, the first being the way Indian doctors are drawing on Western healthcare practices to provide explanations to patients regarding their condition. When her doctor goes into the minute details of the procedure the day before her surgery, Duara is unable to process her thoughts. She would have liked to be spared this overwhelming information. This goes to show that the crude exposition of treatment details by medical authorities could have unintended consequences. Perhaps the doctor meant well, but she was unable to comprehend Duara’s frame of mind.

A second crucial observation concerns the monopoly of pharmaceutical companies, which make certain lifesaving drugs so expensive that people are compelled to choose death over life. When Dr Suman, Duara’s consultant, suggests she take Olaparib, a fairly new medication on the market, to decrease the likelihood of the cancer recurring, Duara is astounded to learn that its annual cost comes to approximately $18,084. She feels that she would rather die than bear this exorbitant expense and decides to stick with the long-tested drug Tamoxifen.

Apart from exposing the capitalistic, market-driven ethos of the increasingly privatised  Indian healthcare system, Duara also speaks up, thirdly, against the dominant Indian discourse which treats cancer as a tragedy, rife with stigma, leading to suppression, social isolation and depression (Squiers et al. 2021). By writing her story, Duara places emphasis on the body as an “unpredictable, changeable, and unstable grounding of perception and identity” and enriches the growing repository of personal writings on illness coming out of India (Ferri 2011, 2272).

Medical humanities and autobiographical illness narratives in India

Medical humanities is still in its nascent stage in India. Although there have been some significant but scattershot advances in this area, due to the diversity and complexity of the sociocultural, political and economic landscape of the country, a sustained dialogue to bring the field to the forefront of public discourse is yet to come. Autobiographical narratives of illness and disability emerging from India could perhaps enable the medical humanities to thrive here. They could also enable Western discourses to refract their own methodological assumptions and develop more nuanced ways of reading patient narratives. Illness connects us across global barriers and the pandemic has underscored the need to communicate more effectively, despite the geopolitical differences, in order to provide better and more accessible healthcare for all. Duara’s health struggles and her journey through the Indian medical system, as a brown woman from a particular economic background, highlight the social context within which cancer patients in India navigate the terrain of medicine – a trajectory that would certainly differ from that of women residing in developed countries. These variations in patient experience necessitate the development of a more culturally nuanced and socially situated medical humanities, one that is distinct from dominant Western (and predominantly anglophone) perspectives.


About the author

Kaustabh Kashyap is a Senior Research Fellow, pursuing his PhD in disability and illness narratives at the intersection of disability studies and health humanities at Cotton University, India. His research paper titled “Twinning the Pandemic and the Anthropocene: Crises, Challenge and Conciliation in the Anxious Witnessing of Nonhuman Agency” has been published in the SCOPUS journal Rupkatha. His research paper, co-authored with his supervisor, Dr Rakhee Kalita Moral, is forthcoming in a volume titled Retrieving the Crip Outsider: Representations of Disability in Literature and Culture, to be published by Bloomsbury later this year. He also collaborated with Dr Rajashree Borgohain on a research paper for the 4th Indian Disability Studies Collective (IDSC) conference, which was  held at Aligarh Muslim University, India, in February 2024. He has published poetry and translated essays and is currently translating a collection of poems from the Assamese language into English.


References

Campbell, Joseph. 1949. The Hero with a Thousand Faces. Princeton: Princeton University Press.

Couser, G. Thomas. 2009. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor, MI: University of Michigan Press.

Day, Ally. 2019. “Doing Disability Autobiography: Introducing Reading Group Methodology as Feminist Disability Praxis.” In Routledge Methodologies for Auto/Biography Studies, edited by Kate Douglas and Ashley Barnwell, 186–92. New York: Routledge.

Duara, Srutimala. 2022. My Journey Through Cancer. Guwahati, AS: WissenMonk.

Ferri, Beth A. 2011. “Disability Life Writing and the Politics of Knowing.” Teachers College Record 113 (10):2267-82. https://doi.org/10.1177/016146811111301006.

Frank, Arthur. (1995) 1997. The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago Press.

Hustvedt, Siri. 2009. The Shaking Woman, or A History of My Nerves. New York: Henry Holt and Company.

Islam, Mohaiminul, and Ujjwal Jana. 2023. “Disability Life Writing in India.” In Crip AuthorshipDisability as Method, edited by Mara Mills and Rebecca Sanchez, 210–17. New York: New York University Press.   

Jurecic, Ann. 2012. Illness as Narrative. Pittsburgh: University of Pittsburgh Press.

Kaplan, Alice, and Laura Marris. 2022. States of Plague: Reading Albert Camus in a Pandemic. Chicago: Chicago University Press.

Kleinman, Arthur. (1988) 2020. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books.

Sim, Stuart. 2023. Daniel Defoe’s a Journal of the Plague Year and Covid-19: A Tale of Two Pandemics. Cham, Switzerland: Palgrave Macmillan. 

Squiers, Linda, Mariam Siddiqui, Ishu Kataria, Preet K. Dhillon, Aastha Aggarwal, Carla Bann, Molly Lynch, and Laura Nyblade. 2021. Perceived, Experienced, and Internalized Cancer Stigma: Perspectives of Cancer Patients and Caregivers in India. Triangle Park, NC: RTI Press.

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