The Air that I Breathe: Surviving the Loss of the Communication Senses Through Narrative Writing

Abstract

ABSTRACT There is a dearth of recorded lived experiences and reflections of scholars and healers grappling with the loss of their communication senses. I am assaulted by deafblindness as a result of a degenerative disease and find my world is unmade. With the loss of sight and the disappearance of hearing come dependence and despair. This personal essay looks at my poor experience at ground zero for research, writing and advocacy—combining personal memoir with other illness and disability narratives to elucidate the universality of human experience (particularly of suffering) while focussing on how carers can do better. I write of the wreckage of, repair to and transformation of my experience and tell of brief formative episodes in my history to give relatable examples of both devastation and resilience in the face of dual sensory loss. In addition, I detail how through my reading and writing I espouse the role of the deafblind researcher—pathfinding so the way can be easier for future students. This writing offers insights into the ways narrative medicine can help repair the self. We share stories, and then others can go on too.