Susan C. Ball is the author of Voices in the Band: A Doctor, Her Patients, and How the Outlook on AIDS Care Changed from Doomed to Hopeful. A medical doctor, she 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. She has cared for AIDS patients for more than 20 years.
Q: How did you end up working at the Center for Special Studies, and why did you decide to write about your experiences?
A: I was trained in internal medicine, and was working as an internist...I became increasingly interested in HIV. It was everywhere, and it was pretty clear that a lot of people didn’t want to take care of the patients.
A friend of a friend of a friend worked here, and was going to be leaving. On a whim, I sent my [resume] to the clinic, to Dr. Jacobs, and he had me interview. [Nothing happened immediately, but] nine or ten months later, one of the doctors was leaving, and [Dr. Jacobs] said are you still interested. That was in 1992.
I also found, with the patients, there are so many characters that we take care of. Sometimes I would sit down and write a little sketch of what a patient was like.
After I was at CSS for more than 10 years, the epidemic had changed so much, after protease inhibitors [became available] in the mid-‘90s. Also, our work changed….
I wanted to write about individual patients—so many of them had such colorful lives. I also wanted to capture what our clinic had been like, with our multidisciplinary approach.
Q: You describe caring for AIDS patients in the early 1990s as being “like trekking on another planet, exploring unknown territory where few wanted to go.” Can you describe how your work has changed over the years, and was there one particular turning point, or several along the way?
A: With the development of these drugs, protease inhibitors, there was a recognition that with these cocktails, you can fully suppress the virus, and allow the immune system to recover. Some people’s T-cells came back to normal; some less so. That was over a period of a couple of years. There were two or three medicines that came to market at almost the same time….
We went from most of our work being with inpatients to it being [mostly] an outpatient disease. The hospital makes money on inpatients. To have more inpatients, we had to have more outpatients, by accrual, and that promoted the expansion of the clinic.
Now, there are 10 full-time physicians, each carrying 200-300 patients. In the early days, there were three of us, each carrying about 150 patients. There was so much work for each patient….
So what that did was it took away some of the intimacy we had. It’s good and bad—people are more autonomous, but we lost some of the real sense of working in a small team. Obviously, the patients are doing better [so that’s good].
Q: You write that your title is borrowed from And the Band Played On by Randy Shilts. How did that book inspire you?
A: I still think that was an amazing book. It so thoroughly chronicled the first years [of the epidemic], from a personal standpoint, what was going on in politics, what was going on in science. Randy Shilts’s writing style was so engaging. You could see the people in the room.
What I wanted to accomplish for my book was to recognize that all these people who died were all individuals.
Q: How do writing and medicine fit together for you?
A: I’m very much involved in narrative medicine. I feel like writing is not only a healing process but also a telling process. You can write about something [and look at] how it fits in with something you’re doing.
I don’t teach writing, but I think writing is important. I teach classes with medical students, and we do reflective writing. I think writing can be such a powerful thing. It’s a way of expressing a narrative—it brings in a lot of additional layers….
--Interview with Deborah Kalb