The critical normalcy of everyday life in the face of illness and death

Abstract

The paper discusses the everyday life of people affected by chronic degenerative diseases from the standpoint of an ethnography in a palliative home care service in the public network of Rio de Janeiro. In the process of dying from illness, daily life is transformed, launching the ill person and their caregivers into the challenge of reconstructing a sense of continuity in life. In order to understand the experience of dying from chronic degenerative diseases, from a specific analytical point of view, I adopt the body as a starting point. Thus, I aim to highlight the connections between the experiential dimension of illness and death, and the discursive and institutional frameworks dedicated to categorizing and managing bodies. I argue that the disturbances, oscillations, and anguish of illness are increasingly incorporated into the “ordinary”, with the decisive mediation of care work. I thus conclude that care work is the main instrument in the delicate task of creating continuity in face of the impending definitive rupture of organic life, whose approach gives rise to many small and large disturbances in everyday life.