Final Negotiations: A Story of Love, Loss, and Chronic Illness (Health, Society, and Policy)

When Carolyn Ellis, a graduate student, and Gene Weinstein, her Professor, fell in love, he was experiencing the first stages of emphysema. As he became increasingly disabled and immobile, these two intensely connected partners fought to maintain their love and to live a meaningful life. They learned to negotiate their daily lives in a way that enabled each of them to feel sufficiently autonomous him not always like a patient and her not always like a caretaker. Writing as a sociologist, Ellis portrays their life together as a way to understand the complexities of romance, of living with a progressive illness, and, in the final negotiation and reversal of positions, of coping with the loss of a loved one. This rare memoir full of often raw details and emotions becomes an intimate conversation about the intricacies of feeling and relating in a relationship. What Ellis calls experimental ethnography is a finely crafted, forthright, and daring story framed by the author's reflections on writing about and analyzing one's own life. Casting off the safe distance of most social science inquiry, she surrenders the private shroud of a complex relationship to bring sociology closer to literature. Carolyn Ellis is Professor of Sociology at the University of South Florida, Director of the Institute for Interpretive Human Studies, and author of several books, including "Investigating Subjectivity: Research on Lived Experience" (co-edited with Michael Flaherty).