TY - BOOK AU - Stavrianakis,Anthony TI - Crucible of the Incurable: Facing ALS T2 - Expertise: Cultures and Technologies of Knowledge SN - 9781501778346 AV - RC406.A24 U1 - 616.8/39 23/eng/20240613 PY - 2024///] CY - Ithaca, NY PB - Cornell University Press KW - Amyotrophic lateral sclerosis KW - Patients KW - Care KW - Social conditions KW - Psychological aspects KW - ANTHROPOLOGY KW - MEDICINE & MEDICAL ISSUES KW - SOCIOLOGY & SOCIAL SCIENCE KW - SOCIAL SCIENCE / Anthropology / Cultural & Social KW - bisacsh KW - Ethnography of illness, Neurodegenerative disease diagnosis, Illness narrative, Incurable N1 - Frontmatter --; Contents --; Preface FACING AMYOTROPHIC LATERAL SCLEROSIS --; Acknowledgments --; Introduction ON LINKING KNOWLEDGE AND CARE FOR ALS --; Part 1 KNOWLEDGE --; 1 THE EMERGENCE OF A DIAGNOSTIC CERTITUDE --; 2 NOSOLOGICAL INDETERMINATIONS --; Part 2 CARE --; 3 MULTIDISCIPLINARY ALS CARE --; 4 ALS CLINIC --; 5 PALLIATIVE CARE CLINIC --; Part 3 ONE BY ONE --; 6 EPISTLES TO ONES --; 7 PLEA FOR A BLESSING --; 8 ADVOCATE --; Conclusion THE INCURABLE AND THE POSSIBLE --; Notes --; Index; restricted access N2 - 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 UR - https://doi.org/10.1515/9781501778346?locatt=mode:legacy UR - https://www.degruyter.com/isbn/9781501778346 UR - https://www.degruyter.com/document/cover/isbn/9781501778346/original ER -