Critical Moments of Meaning and Being: Narratives of Cancer during Young Adult Life
Emerging conversations within oncology have drawn more attention to cancer among young adults (ages 18-45). Recent research has illuminated many of the psychosocial difficulties young adults face as they go through the many trials and tribulations of chronic illness. However, a subject still understudied, much is unclear about the personal as well as the cultural implications of being diagnosed during this period of time. In a book of cancer stories, performer and young adult cancer patient Kairol Rosenthal (2009) expressed her frustration with what she saw as “stereotypes” promulgated by the limited public discourses that exist on the subject (p. 7). She sought to counterbalance these representations with stories capturing the “complexities of our real daily lives” (p. 7). Indeed, in oncological discourses young adults tend to be cast in oversimplified terms, based upon cultural expectations about what young adulthood should be and pressures to conform to those standards. Intersecting with dominant discourses within narrative identity development, two imperatives are placed upon young adults’ stories: integration of different life experiences and selves into a coherent narrative and developing a sense of self-authorship in the direction of one’s life. What seems to be lost in these imperatives within the existing research is what is at stake for individual lives (a phenomenological perspective) and how those stakes are negotiated or contested with hegemonic trajectories of life (a critical perspective). Receptive to Rosenthal’s critique of dominant discourses around cancer and young adulthood, the purpose of this thesis was to explore the complexity and diversity of young adults living with cancer. More specifically, I intended to interrogate some of their existential and biographical challenges as expressed in their narratives of cancer, as well as their engagements with ideological constructions of young adulthood, namely, the expectations of narrative coherence and self-authorship. This research marked a departure from most studies on the subject in its qualitative methodology (i.e., narrative analysis) and in its explicit evaluation of the effects of cultural discourses on young adults’ attempts to make meaning. More generally, this research shows the importance of language—in discourses, narratives, and metaphors—in constructing and communicating illness experiences. For this project, I gathered a mix of written and oral narratives (through semi-structured interviews) from 21 participants from across Canada. The foci of analyses were on what could be called narrative ‘moments of meaning’ and ‘moments of being,’ that is, situated expressions of how they made sense of their worlds and themselves. Many of these were critical moments in the sense of questioning and resisting dominant discourses of cancer and young adulthood. Their moments of meaning often expressed negotiation of personal desires and innovative intentions with familiar cultural narratives or “prototypical plots” (Good, 1994)—including stories of battling cancer, embarking on a life journey, nearing recovery, encountering unpredictability and mystery, and living with chaos. These moments of meaning served an array of purposes well beyond the expected function of constructing a coherent narrative. When telling of identity disruptions and the liminality of cancer, participants produced both more orderly moments of being (e.g., survivor, patient, or warrior identities) and more liminal moments of non-being (e.g., victim, phoenix, or trickster identities). Self-authorship seemed to be present among the former, while the latter expressed less control and certainty of being—which was not always seen as a problem. These moments of being and non-being were collaborated and contested within the intersubjective spaces of their clinical relationships, local worlds, and cancer patient communities. More specific to their age group, their moments of being and non-being often related to what may be understood as developmental identities, including the ‘traditional milestones’ such as individual autonomy, family (i.e., marriage and parenthood), and vocation (i.e., getting an education and building a career). In their struggles they sometimes reaffirmed these cultural ideals toward identity integration and other times resisted them as “normalizing ideologies” (Becker, 1997) of young adulthood. As part of these larger negotiations of meaning and being, the participants expressed struggles to understand the moral significance of their illnesses. Confronted with what may be called “causal ontologies” of suffering (Shweder, 1997), they spoke of different etiological models of cancer’s origins as well as reconciliatory models for living with cancer in the future. Their narratives sometimes led toward “remoralization” (Kleinman, 1988)—couching experiences of suffering in terms of a moral order (narrative coherence) and personal responsibility (self-authorship)—and sometimes led away from it, depending on whether they believed their illnesses originated from events in their personal and social lives. Overall, the participants in this study communicated complex and potentially chronic existential challenges. In many ways their narratives resisted dominant representations of young adults with cancer—and of cancer patients in general—suggesting that such representations need to be rethought. Their critical moments of meaning and being may serve as counternarratives to the stereotypes of concern to Rosenthal and many other cancer patients. Specifically, their narratives revealed the merits and limits of the ideological construction of young adulthood as a time of narrative coherence and self-authorship. This study has important implications for future health research and psychosocial support in the field of oncology; building upon a “narrative medicine” (Charon, 2006), sensitivity to how language is used among young adult cancer patients may lead toward more inclusive clinical practices.
DegreeDoctor of Philosophy (Ph.D.)
ProgramCulture and Human Development
CommitteeMcMullen, Linda; Carverhill, Philip; Howe, Leslie; Lafrance, Michelle
Copyright DateDecember 2013
qualitative health research