Voices in the Band
A Doctor, Her Patients, and How the Outlook on AIDS Care Changed from Doomed to Hopeful
by Susan C. Ball
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Pub Date Apr 22 2015 | Archive Date Mar 17 2015
Cornell University Press | ILR Press
Description
"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 IntroductionIn 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.
Advance Praise
"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
Available Editions
| EDITION | Other Format |
| ISBN | 9780801453625 |
| PRICE | $27.95 (USD) |
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Featured Reviews
Reviewer 102154
In 1992, doctor Susan C Ball began her medical career working in an HIV/AIDS clinic. "Voices in the Band" recalls her years of working in that clinic, from the first years before HIV itself was fully identified through to the years of HAART, the first real working treatment to keeping HIV-positive patients from developing AIDS and its associated syndromes and infections.
This is an incredibly powerful book. The reader follows through with Ball along those early years as she works with so many incredibly sick patients, and we feel her hopelessness, along with the rest of the medical team, as they watch these patients die one by one.
Ball includes many details of her patients' lives, including how many of them contracted HIV. There is never any blame placed on any of the patients, just a kind of weariness as she sees patients continuing to have unprotected sex and use drugs, even once they are HIV positive. She goes deeper, too, revealing details of their lives - the poverty, abuse, rejection by family - which led to some of their risk-taking actions. Again, there is no blame, just a sorrow for a society which didn't help these people when they were well, and now that they were HIV positive, rejected them all the more.
The reader follows along as too many patients die, and more are sent off to full-time nursing care and are expected to die. And then the real AIDS medications begin to become available, and Ball and her team are able to do something, even bring several patients back from what seemed like a certain death.
Ball intersperses some of her own history into the text as well, paralleling her life with those of her patients: unlike many of them, she has a stable partner, and like many of them, she has children. One can only imagine how much her own heart broke as she watched too many of her patients die, leaving behind their children, while she got to go home to her family.
This is an incredibly important book which brings humanity to the face of the earlier patients suffering from HIV/AIDS. Ball is to be highly commended for it.
