Voices in the Band: A Doctor, Her Patients, and How the Outlook on AIDS Care Changed from Doomed to Hopeful

by Susan C. Ball

Overview

"I am an AIDS doctor. When I began that work in 1992, we knew what caused AIDS, how it spread, and how to avoid getting it, but we didn't know how to treat it or how to prevent our patients' seemingly inevitable progression toward death. The stigma that surrounded AIDS patients from the very beginning of the epidemic in the early 1980s continued to be harsh and isolating. People looked askance at me: What was it like to work in that kind of environment with those kinds of people? My patients are 'those kinds of people.' They are an array and a combination of brave, depraved, strong, entitled, admirable, self-centered, amazing, strange, funny, daring, gifted, exasperating, wonderful, and sad. And more. At my clinic most of the patients are indigent and few have had an education beyond high school, if that. Many are gay men and many of the patients use or have used drugs. They all have HIV, and in the early days far too many of them died. Every day they brought us the stories of their lives. We listened to them and we took care of them as best we could."—from the Introduction

In 1992, Dr. Susan C. Ball began her medical career taking care of patients with HIV in the Center for Special Studies, a designated AIDS care center at a large academic medical center in New York City. Her unsentimental but moving memoir of her experiences bridges two distinct periods in the history of the epidemic: the terrifying early years in which a diagnosis was a death sentence and ignorance too often eclipsed compassion, and the introduction of antiviral therapies that transformed AIDS into a chronic, though potentially manageable, disease. Voices in the Band also provides a new perspective on how we understand disease and its treatment within the context of teamwork among medical personnel, government agencies and other sources of support, and patients.

Deftly bringing back both the fear and confusion that surrounded the disease in the early 1990s and the guarded hope that emerged at the end of the decade, Dr. Ball effectively portrays the grief and isolation felt by both the patients and those who cared for them using a sharp eye for detail and sensitivity to each patient's story. She also recounts the friendships, humor, and camaraderie that she and her colleagues shared working together to provide the best care possible, despite repeated frustrations and setbacks. As Dr. Ball and the team at CSS struggled to care for an underserved population even after game-changing medication was available, it became clear to them that medicine alone could not ensure a transition from illness to health when patients were suffering from terrible circumstances as well as a terrible disease.

Product Details

ISBN-13:	9780801453625
Publisher:	Cornell University Press
Publication date:	04/22/2015
Series:	The Culture and Politics of Health Care Work
Pages:	272
Product dimensions:	6.10(w) x 9.00(h) x 1.00(d)
Age Range:	18 Years

About the Author

Susan C. Ball is Associate Professor of Medicine at Weill Cornell Medical College and Assistant Director of the Bernbaum Unit, Center for Special Studies, New York-Presbyterian Hospital. As an internist, she has taken care of patients with AIDS for more than twenty years.

Table of Contents

Author's Note
Introduction
1. 1992: Beginning
2. 1992: So Much to Learn
3. 1992: No Easy Answers and Little to Offer
4. 1994: Too Many Drugs, No Medication
5. 1994: Being Mindful of the Subtext
6. 1994: Weekend on Call
7. 1994: Christmas
8. 1995: Another Support Group
9. 1995: Mothers and Children
10. 1995: Decisions and Revisions
11. 1995: Colleagues and Families
12. 1995: So Many Stories and Some New Faces
13. 1996: Some Hope in the Despair
14. 1996: Hit Early, Hit Hard
15. 1997: Amazing Changes
16. 1999: Despite Our Best Intentions
17. 1999: Coping with a Different Paradigm
18. 2000: Going Home
Epilogue

What People are Saying About This

Jeffrey Laurence

This is an extraordinary tale of a courageous young woman doctor and her team as they care for people who will not bend in the face of extraordinary challenges. It explores a joint journey between physician and patient through stories that are probing and personal and life-changing.

J Relig Health - Dr. Pat Fosarelli

""This is a very well-written bookone that I would encourage any health profession or social worker to read.... This book is a valuable history of the AIDS epidemic from one dedicated physician's perspective.""

Lynne Sharon Schwartz

Susan C. Ball's lively and beautifully written memoir of her twenty years working at an AIDS clinic in a major New York City hospital is a moving account that traces the dramatic changes in AIDS treatment over the last decades and gives poignant voice to a group of socially marginalized and colorful characters who come to life as they would in a novel. Above all, Voices in the Band is a portrait of a vibrant community of doctors and patients, filled with dramatic scenes and imbued with Ball’s idealism, intelligence, and dedication.

Paul Volberding

The early AIDS epidemic forced doctors, hospitals, and entire communities to confront what it really means to care—even in the face of fear and stigma. Voices in the Band tells a deeply personal story of courage and professionalism. The book resonates with the latest Ebola epidemic and helps us recall a deeply important chapter of American medicine. Great stories, real insights.

Rita Charon

Susan C. Ball's Voices in the Band accomplishes, with its writerly nuance and tact, what few memoirs or illness narratives even try for. Quietly, tenderly, without bombast, she gives depth and power and meaning to the patients and caregivers she represents. I feel comforted and elated by reading this account of decades of AIDS care, because Dr. Ball shows the capacity of us humans to deeply, daringly engage with one another at our times of greatest need. This book will become the next classic in AIDS literature, revealing not only triumphs in AIDS health care but also transcendent hope for profound care on this mortal earth. What a voice. What voices.

Editorial Reviews

This book will certainly be useful to anyone interested in the question of what motivates philosophers to rule, and of what Plato means when he talks of compulsion and necessity.

Phronesis

This is not a book about government or medical strategies about the HIV epidemic and whether they were successful or not. Instead, this is a book of memories. Dr. Ball writes of her patients and her fellow staff members, and the stories she tells vary from heart-breaking to wildly funny. Some of the stories seem almost unbelievable, and several times in the book, she (or one of her fellow staff members) says, 'You can't make this stuff up'.... This is a very well-written book, one that I would encourage any health professional or social worker to read.

Journal of Religion and Health

All over the country, clinics like Dr. Ball's were staffed by teams of doctors, nurses, nutritionists, social workers and, often, members of the clergy. The group focus was pain relief, symptom control, short-term problem solving, long-term planning—the pieces of medical care we routinely overlook when we have pills to dispense. Caregivers and patients formed tight little communities, allied against an impossible foe. When effective treatment showed up, those intense little worlds fell apart. More than any doctor who has written about AIDS, Dr. Ball movingly parses out the mixed emotions accompanying that weird descent from providing transcendent meical care back to doing more ordinary work.

The New York Times

"This is not a book about government or medical strategies about the HIV epidemic and whether they were successful or not. Instead, this is a book of memories. Dr. Ball writes of her patients and her fellow staff members, and the stories she tells vary from heart-breaking to wildly funny. Some of the stories seem almost unbelievable, and several times in the book, she (or one of her fellow staff members) says, 'You can't make this stuff up'....This is a very well-written book, one that I would encourage any health professional or social worker to read."

Journal of Religion andHealth - Pat Fosarelli

"All over the country, clinics like Dr. Ball's were staffed by teams of doctors, nurses, nutritionists, social workers and, often, members of the clergy. The group focus was pain relief, symptom control, short-term problem solving, long-term planning—the pieces of medical care we routinely overlook when we have pills to dispense. Caregivers and patients formed tight little communities, allied against an impossible foe. When effective treatment showed up, those intense little worlds fell apart. More than any doctor who has written about AIDS, Dr. Ball movingly parses out the mixed emotions accompanying that weird descent from providing transcendent meical care back to doing more ordinary work."

The New York Times - Abigail ZugerM.D.

"This book will certainly be useful to anyone interested in the question of what motivates philosophers to rule, and of what Plato means when he talks of compulsion and necessity."

Phronesis - Dominic Scott

"This is an extraordinary tale of a courageous young woman doctor and her team as they care for people who will not bend in the face of extraordinary challenges. It explores a joint journey between physician and patient through stories that are probing and personal and life-changing."

Jeffrey Laurence

""This is a very well-written bookone that I would encourage any health profession or social worker to read.... This book is a valuable history of the AIDS epidemic from one dedicated physician's perspective.""

J Relig Health - Dr. Pat Fosarelli

"The early AIDS epidemic forced doctors, hospitals, and entire communities to confront what it really means to care—even in the face of fear and stigma. Voices in the Band tells a deeply personal story of courage and professionalism. The book resonates with the latest Ebola epidemic and helps us recall a deeply important chapter of American medicine. Great stories, real insights."

Paul Volberding

"Susan C. Ball's lively and beautifully written memoir of her twenty years working at an AIDS clinic in a major New York City hospital is a moving account that traces the dramatic changes in AIDS treatment over the last decades and gives poignant voice to a group of socially marginalized and colorful characters who come to life as they would in a novel. Above all, Voices in the Band is a portrait of a vibrant community of doctors and patients, filled with dramatic scenes and imbued with Ball’s idealism, intelligence, and dedication."

Lynne Sharon Schwartz

"Susan C. Ball's Voices in the Band accomplishes, with its writerly nuance and tact, what few memoirs or illness narratives even try for. Quietly, tenderly, without bombast, she gives depth and power and meaning to the patients and caregivers she represents. I feel comforted and elated by reading this account of decades of AIDS care, because Dr. Ball shows the capacity of us humans to deeply, daringly engage with one another at our times of greatest need. This book will become the next classic in AIDS literature, revealing not only triumphs in AIDS health care but also transcendent hope for profound care on this mortal earth. What a voice. What voices."

Rita Charon

"All over the country, clinics like Dr. Ball's were staffed by teams of doctors, nurses, nutritionists, social workers and, often, members of the clergy. The group focus was pain relief, symptom control, short-term problem solving, long-term planning—the pieces of medical care we routinely overlook when we have pills to dispense. Caregivers and patients formed tight little communities, allied against an impossible foe. When effective treatment showed up, those intense little worlds fell apart. More than any doctor who has written about AIDS, Dr. Ball movingly parses out the mixed emotions accompanying that weird descent from providing transcendent meical care back to doing more ordinary work."—Abigail Zuger, M.D., The New York Times (March 31, 2015)

"This is not a book about government or medical strategies about the HIV epidemic and whether they were successful or not. Instead, this is a book of memories. Dr. Ball writes of her patients and her fellow staff members, and the stories she tells vary from heart-breaking to wildly funny. Some of the stories seem almost unbelievable, and several times in the book, she (or one of her fellow staff members) says, 'You can't make this stuff up'. . . .This is a very well-written book, one that I would encourage any health professional or social worker to read."—Pat Fosarelli,Journal of Religion andHealth(October 2015)

"This book will certainly be useful to anyone interested in the question of what motivates philosophers to rule, and of what Plato means when he talks of compulsion and necessity."—Dominic Scott,Phronesis(2015)

"This is a very well-written book, one that I would encourage any health profession or social worker to read... This book is a valuable history of the AIDS epidemic from one dedicated physician's perspective." — Dr. Pat Fosarelli, J Relig Health (2015)

"Susan C. Ball's lively and beautifully written memoir of her twenty years working at an AIDS clinic in a major New York City hospital is a moving account that traces the dramatic changes in AIDS treatment over the last decades and gives poignant voice to a group of socially marginalized and colorful characters who come to life as they would in a novel. Above all, Voices in the Band is a portrait of a vibrant community of doctors and patients, filled with dramatic scenes and imbued with Ball’s idealism, intelligence, and dedication."—Lynne Sharon Schwartz, author of Disturbances in the Field and Ruined by Reading

"This is an extraordinary tale of a courageous young woman doctor and her team as they care for people who will not bend in the face of extraordinary challenges. It explores a joint journey between physician and patient through stories that are probing and personal and life-changing."—Jeffrey Laurence, MD, Professor of Medicine, Weill Cornell Medical College

"Susan C. Ball's Voices in the Band accomplishes, with its writerly nuance and tact, what few memoirs or illness narratives even try for. Quietly, tenderly, without bombast, she gives depth and power and meaning to the patients and caregivers she represents. I feel comforted and elated by reading this account of decades of AIDS care, because Dr. Ball shows the capacity of us humans to deeply, daringly engage with one another at our times of greatest need. This book will become the next classic in AIDS literature, revealing not only triumphs in AIDS health care but also transcendent hope for profound care on this mortal earth. What a voice. What voices."—Rita Charon, Program in Narrative Medicine, Columbia University

"The early AIDS epidemic forced doctors, hospitals, and entire communities to confront what it really means to care—even in the face of fear and stigma. Voices in the Band tells a deeply personal story of courage and professionalism. The book resonates with the latest Ebola epidemic and helps us recall a deeply important chapter of American medicine. Great stories, real insights."—Paul Volberding, MD, Professor of Medicine and Director, AIDS Research Institute, University of California San Francisco

From the Publisher

02/15/2015
We witness the lives of people who have been patients of Ball (Weill Cornell Medical Coll.) at the Center for Special Studies, an AIDS clinic at a major medical center in New York City, from 1992 to 2000. According to the author, over that time, how we treat these patients and how they interact with the world has changed. The core of the story is in the retelling of the lives by a compassionate doctor and her tales of how they all manage to address the shifting issues of treatment and life. Ball manages to convey the patients' and the clinic's experiences in a manner that is both empathetic and compelling. While Ball doesn't quote discussions, she uses her memory to re-create conversations in a lively and convincing style that draws in the reader. VERDICT Those who seek an inside perspective on the lives of those marginalized by HIV and see a sliver of how they interact with the health-care system will find this an excellent book. It is not a work of politics or social analysis but focuses on the lives of the people involved.—Eric D. Albright, Tufts Univ. Lib., Boston

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