Crucible of the Incurable

Book excerpt: Crucible of the Incurable concerns how people face life with amyotrophic lateral sclerosis (ALS). Anthony Stavrianakis spent a year in clinics and with people living with the illness in the United States. He examines the multiple meanings of care in a context of a chronic, degenerative, one-hundred percent fatal, neuromuscular illness, whose most common duration is between two and five years. How do people diagnosed with ALS continue to "live as well as possible, for as long as possible" in accordance with the normative work at the heart of outpatient ALS care? Crucible of the Incurable shows how those touched by the situation of a person living with ALS bear this problem and this task. Given the sense of certitude around the diagnosis, given past experiences of those aware of its usual progression, and given the uncertainty of the disease's cause and its progression for each specific person; how then do people orient themselves to the experience of life with this illness, how to support those who are confronted with it, and how to provide aid or solace.