Data Matters: The Informatized Body in Cancer Narratives

Abstract

The informatization of illness in the form of databases, scans, and reports results in the absence of affective data. The vulnerability caused due to illness leads to an excess of feelings that the scientific and often bureaucratic mundanity of medical records refuses to capture. How can the personal illness narrative supplement this absence of subjectivity in informatized medical representations bereft of affect? Reading the rendering of biomedical data in Tom Corby’s digital data documentary bloodandbones.org, Marisa Acocella Marchetto’s graphic somatography Cancer V ixen, and Brian Fies’s graphic caregiving memoir Mom’s Cancer, this essay argues that the ill person encounters data presented by the medical institution – made objective through the authority of science – and counters it through a textual refashioning of the self. I identify this palimpsestuous layering of affect as ekphrastic and study the formation of the cancer patient’s narrative self via ekphrastic remediation.