My presentation examines intersections between cultural and racial identity, individual agency, chronic illness, and narrative ethics. Building upon the contemporary field of Narrative Medicine, which aims to bridge divides between patients and physicians and enhance “narrative competence” (Charon 2001), I will investigate how chronic illness memoirs reframe narrative expectations and healing trajectories. For the purpose of this presentation, I will explore Lucy Grealy’s Autobiography of a Face (1994) and Porochista Khakpour’s Sick (2018). Though they each contend with different conditions – Ewing's sarcoma (a rare form of cancer) and Lyme disease, respectively – Grealy and Khakpour interrogate boundaries which separate the “self” from the “environment”, “speech” from “silence”, “space” from “time”, and “health” from “disease.”. My methodological framework bridges literary theory, disability studies, and bioethics. Through this interdisciplinary lens, I will attend to sites of bodily difference – such as race, ethnicity, and sexuality – without seeking to uniformly translate each writer’s positionality and subjective reality in order to place them in a coherent narrative arc. They both challenge what constitutes medical and narrative “progress” and development, and further emphasize how diagnostic labelling and prescriptive understandings of health and wellness impact patient identity. They also invite further probing: what does it mean for a chronically ill writer to refuse “placement” within a diagnosis/story, and what are the ramifications of this misalignment for literary and medical practice? I will suggest that their writings collapse normative dichotomies embedded within society and underscore the importance of relationality, interconnectedness, and collective care-building in both medical and literary spheres alike.

Mikaela Kassar is a PhD student in the Department of English at McGill University, where she examines articulations of illness in fictional and autobiographical texts. Her current research focuses on the intersections between chronic conditions and narrative ethics. She firmly believes in the power of storytelling in the healing setting, and she is excited to continue learning about the connections between medicine and literature.

COI Disclosure: I do not have an affiliation (financial or otherwise) with any for-profit or not-for-profit organizations