Plague Years

JB: How did this book come about?

RS: Well, this book has been forming for 40 years, believe it or not. Not that I really intended to write a book, but I kept journals early on. And then many years after dealing with HIV, I thought maybe I would write something, but I really couldn’t do it because I was too emotionally close to this. Especially in the ’80s and ’90s when people were dying. I can keep a journal, but I couldn’t actually write a coherent book. A number of years passed before I felt that I could be more objective, because it was really in the last 15 years or so that I’ve had no one die of HIV. I feel like I had more distance. I thought it was important timed right now, because I thought that the younger generation didn’t really know what it was like to go through this. And like the holocaust, it’s something that has to be memorialized.

You mentioned your journal. I think all of us who have read the book and hopefully will be reading the book, are very grateful that you did that. Was that a conscious decision?

I like to write, that’s one thing. I like to channel anxieties, stress, frustrations, to sort of record. I didn’t really have something primary in mind when I kept them. I didn’t keep them all the time—it was intermittent. But they turned out to be immensely useful to me today, because so many years have passed since I’ve had those experiences, that I can’t remember them, it’s very difficult. But the journals brought them back to life.

They sure do. Some of the passages are so descriptive and detailed, I felt like I was taken back to that time. I remember back in those days going to the 11th floor at St. Joseph’s [Hospital] when you were a physician there, and visiting friends, particularly one friend, who may even have been your patient, who was very sick. We probably crossed paths at that time, before you became my physician. What was the writing process like, and how did it feel to write that way?

It was painful. It was painful to go back and remember that, so immense sadness. But I thought it was still an important story to tell. I can’t say that I was depressed as I wrote this, but I would say as I reflected on the stories that I was relating, it was very sad. I wrote about people I knew very well, some friends, who went through this. It was very cathartic in a way, to work through that. My friend Neal, who was my roommate in college, we never really had closure with this. I mean he died. I found out through his mother that he died, so we never really got to say goodbye. I didn’t know he was even ill, until that very end. He hid everything from me. So, it was a way, in my own mind, to close that part of my life, but it was hard, it was very challenging. There were so many stories I didn’t tell and things that I took out. But again, it’s a creative process.

And it’s interesting too, because it chronicles a lot of the history of AIDS in Chicago during that time. There are a lot of people in the book with only first names, but I know who you’re talking about, so it’s a fascinating look at the history. And I got a personal side of you that I’ve never really known. We’ve been friends, and I’ve been your patient, you’ve been my doctor—I hate that word patient…

So do I [laughs], I hate that.

After all these years, I was like—you forget sometimes when you’re in that kind of relationship, that there’s a person behind that. You were a gay man coming to terms with your sexuality prior to and during the AIDS crisis, and this was all happening for a lot of other people too.

Well, it was a hard time because being gay was not looked at in a very good way. So dealing with that and on top of it all a horrible disease comes along, and people who are very private are suddenly outed, in a way that they didn’t plan. My journey was a lot like that journey too. It was hard to write about that aspect of myself because I’m a pretty private person, but I thought it was important to use myself as a vehicle to help people understand what this crisis was—or is—still. Who I am as a person doesn’t really matter to the greater world, but I think in terms of a story about AIDS it was important to show that side of me, even though it was very difficult, and embarrassing to some degree, in some ways.

Yes, you’re very candid, refreshingly so I would say, but you’re also very straightforward. It’s very personal but also educational, and heart-wrenching at times. I would point out to folks that this book was written and came about before COVID. How do you feel about that?

I’ll tell you, first of all, the book had an unintended message to it, which COVID has brought to the forefront, and the message is that we will get through this. We found a way—I mean obviously we haven’t solved HIV, but we found a way for people to live normal lives. We didn’t see that as it was happening and going on; it took a long time to get there, but we got there. And we’ll get through COVID in some way. So the book ends with a positive message, but I think the COVID pandemic deepens the meaning of the book.

Definitely, and I think you kind of have that way with people, you have a positive outlook. I will just say, a good bedside manner.

Thank you, I appreciate you saying that—I try my best!

You say in the book that you actually took a writing course. Can you talk a little bit about that, because I think it changed how you approached the book.

I didn’t mean for it to be a memoir initially. I just started writing a book—I wouldn’t say academic, but more medical. A friend of mine is a friend of an editor at the Journal of the American Medical Association, so I showed it to her. She read through it and said, “You know, I think this needs to be more of a memoir, but I think you have to take a course.” [Laughs.] So she found a course for me. It’s at this place called StoryStudio in [Chicago’s Ravenswood neighborhood]. It’s a wonderful place, so I took this course called “Memoir in a Year.” Basically, there were 10 people in the class, and they were all working on a memoir. We brought our writings in, and the instructor, who was very good, she read 100 pages of it and she made very insightful comments and remarks, which really helped me write the book. In a sense, I totally refashioned it as a result of the course. Originally I had not intended for it to be a memoir, but as I was writing it there were stories and I was in those stories, and that needed to be brought out, but I wasn’t sure how to do it. So that’s kind of how it evolved.

And I think at that point you were probably really glad you had those journals.

Oh absolutely. There was no way I would have even attempted this otherwise. It’s not that I have no memory, but the memories are dim. You know how it is if you try to remember back 20, 30 years. The details are gone. The journals were detailed enough that it brought things back, and of course I embellished things, and sharpened the writing and that kind of thing—the journals are pretty raw. But there’s enough in there that I could really bring all that back to life. I read a lot of memoirs, too, that I thought were really good that helped me shape my memoir. How does someone write a memoir that’s successful, that’s readable, that’s good. So I read other people’s memoirs, and it was very helpful.

It is very readable, and very good. I can vouch for that. There are a lot of people that you have come in contact with over the course of your career and your life who are still around. Do you run this stuff by them, or just say, “you’re in a book?”

I was very careful. First of all, most all of the people in the book are gone. Toward the end there is someone who is sort of an amalgamation of a couple of patients. I want to be very careful, because I don’t want to offend people. When you write something medical, you have to be really careful. Especially when putting living people in them, you could get sued. Because the bulk of the book is at the hardest time in the AIDS crisis, the people, as I said, are not here anymore. So it was not an issue. It was an issue early on. Initially, I had some people read versions of it—I had Dr. David Blatt [one of the leading HIV physicians in Chicago at the height of the epidemic] read it, who said, “Maybe you should be careful about who you put in here.” [Laughs.] Or he’d say, “Are you concerned about this?” I don’t know if you know David, but he approaches things cautiously. So he looked through it and made some comments, and I had to pull some things out. I don’t think the book would be offensive to anyone with HIV.

Oh no, not at all. Actually, you talk very candidly about—I don’t want to give too much of the book away—your own struggle and your own fears. You’re a gay man, you’re in relationships, and you talk about going to some of the bars back then. I moved to Chicago to work at the bars as a DJ, and I remember those same bars. So it was interesting how your personal life paralleled many of the people who were coming to you for medical care.

Well, that’s why I wrote it, too, because no one’s written it from that perspective. There have obviously been a lot of books written about AIDS, but I think my perspective is unique in that way. Being gay, being a primary care physician, being there at the beginning of the epidemic—my whole career has paralleled this epidemic. It was all serendipity. So the book works on multiple levels, and serves multiple purposes.

You were able to get a publisher—anything you would like to tell us about that?

It’s very hard to get published! I first tried to find an agent. I had an agent once in the past, but that was not very successful. I found out that university presses don’t require agents. You can make a proposal yourself. I got this in a circuitous way. I looked for another agent, couldn’t get an agent. Then I just looked through the catalogues of various university presses. A patient of mine had a book published by Northwestern University Press, and he had gotten an “in” for me and they were going to publish it. But then at the last minute they decided they weren’t going to publish a memoir, and they sort of dropped me. So then, strangely, out of the blue I got a query from University of Chicago Press, because I had written another book, on Alfred Russel Wallace, published in 2004, a biography. The University of Chicago Press was publishing some essays about Wallace, and they wanted me to look at the book, and asked me would I make some comments on it, which was very flattering. I read the book, and I made some comments. And then I wrote back and I said, “Oh, by the way, I don’t know if you know this other part of me, but I’m a physician. I’ve taken care of people with AIDS. Would the Press be interested in an AIDS memoir?” The marketing person went to—it turned out—the editor-in-chief, then contacted me and said, “Why don’t you send a proposal and four chapters?” So I sent a proposal and four chapters, and a few days later he said send the whole book. Then a week later he said, “I want to talk.”

Wow! That’s great.

It was so lucky. The editor-in-chief, he got it. He understood what I was doing. He really liked it. They sent it off for peer review. The two peer reviewers were favorable, so they offered me a contract. It was kind of an accident, because I was almost ready to give up. I didn’t want to self-publish, although I might have done it, just to get it out there. The University of Chicago Press is an excellent press, so I feel very honored and very lucky to be able to get them. And they did a beautiful job. The cover is beautiful, they did all the design. So that’s my journey with publishing. It’s a daunting process. You have to be dogged, and be set for disappointment, which I was many times [laughs].

And your husband Ted said the first version was “nitty,” I think was the word. What is nitty?

It was his term [laughs], it’s not in the dictionary. He just said it was too clinical—it needs to be more emotional. And I said, “Well, how do I do that?” That was the real trick. When one’s writing, I’m sure it’s like doing anything creative; it’s hard sometimes to know the kind of effect it’s going to have on someone who’s looking at it. Because I can’t be objective, and when you work on it over and over again, sometimes the emotion seems drained from it. So I couldn’t tell … I can’t tell. But people have read it and said they cried at some point, they found themselves very moved. That’s what I was trying to do but I didn’t know if I did it, or could do it. I want people to be able to feel, even though it’s painful. It’s something that people can’t forget.

We can’t, and we won’t forget. Your book is part of that legacy, so thank you for helping us to remember a very dark but important time.

This interview has been edited for length and clarity.