The Men of the AIDS Generation
The Men of the AIDS Generation
A Study of Gay Men Surviving AIDS
Abstract and Keywords
This chapter provides detailed information regarding the behavioural research program that was used to collect the data which informs the ideas explored in the book. The reader is introduced to the protocol and methodology that was undertaken to obtain these ethnographic, life history interviews. Also included is the sampling methodology and the interview guide. The qualitative methods of analysis, rooted in grounded theory and The Listening Guide, are explained next. Finally, the fifteen men interviewed for this project, all of whom are gay, long-term survivors of AIDS, are introduced and a brief overview of each of these men is provided, conveying information from their respective childhoods’ to the present. The life experiences of these men are suggested to be illustrative of the resilience of these men of the AIDS Generation.
RALPH, ONE OF THE men of the AIDS Generation who you will come to know in this chapter, described his life living with HIV, including through the darkest moments and times of little hope, as follows:
Between April and June of 2012, interviews were conducted with 15 men, all HIV-positive, all gay, ranging in age from 40 to 58, and all long-term survivors of AIDS. The interviews were conducted in my office at NYU with windows on two sides overlooking Washington Square Park to the west and the Brown Building, the site of the infamous Triangle Shirt Factory fire, to the north. Each year on the anniversary of that tragic fire—a public health nightmare—a ceremony is conducted, and at the conclusion of this public acknowledgment, a standing arrangement of flowers is placed alongside the plaque on the Brown Building. This annual recognition is a testament to the lives of those, mostly young immigrant women, who perished on that day in 1912. A mile away, the beauty of the 9/11 Memorial provides a place of comfort and refection regarding those who lost their lives on that infamous day. It struck me more than once during the course of these interviews, with the former World Trade Center site just south of my office and the Brown Building right across the street, that no (p.15) true place of mourning exists for those who have lost their lives to the AIDS disaster, although recent efforts have been undertaken to create the AIDS Memorial Park on the grounds of the former St. Vincent’s Hospital in Greenwich Village.
Our experiences write our history and so I, um, think without these experiences I wouldn’t have been or become who I am now, and so although I didn’t really enjoy it, I appreciate it.
A maroon leather-like sofa was situated on the south side of the office so that each man could look out onto the surrounding environment during the course of the interview. I sat on a chair adjacent to the couch with my back to the western windows, and a small table was placed in front of the sofa where we could rest our bottled waters, coffees, and other beverages during the course of the conversation. At first, I had placed a box of tissues on the table, but recognizing the potentially leading nature of this gesture, I placed the tissues on my desk behind my chair and only moved the box to the table during the interviews when there was a need. More often than not, I reached for the tissues.
Originally, I had planned to interview only 10 men, but as these interviews were being conducted, I realized the complexity of the task that was in front of me. Because the men with whom I spoke came from all walks of life, from various cultural backgrounds, from diverse means and circumstances, of different sizes and shapes, the stories of their lives as HIV-positive gay men were also widely differing. My instinct was thus to speak with more rather than fewer men, believing that my understanding of these life experiences would be more fully realized from a larger sample. In retrospect I also believe that my desire to spend time with more of these men was driven by a sense of kinship and connection—my peers whose life experiences evolved in tandem with my own evolution into middle age.
Throughout the interviews there was an immediate connection and camaraderie with my peers, men of my generation who had lived through the very dark years of the AIDS epidemic. Like me, all were approaching or had emerged into middle age, with a lifetime of loss and sorrow. The connection with each of the men was immediate. There was no awkwardness or any sense on the men’s part that I was a dispassionate academic studying a population I knew very little about; rather, there was the sense that I was one of them—a peer, a brother, a fellow warrior. Ralph expressed this idea clearly to me: “It’s interesting that, you know, it’s not like, um, you can’t relate to any of this, that you’re just hearing it. It’s great that you’re asking me the same stuff that you could probably answer.” And he was correct. Often when the men cried during the interviews, so did I. Our experiences and our lives were bonded by the AIDS crisis. (p.16)
Finding the Men
For anyone who has conducted behavioral research, the task of recruiting study participants can be a harrowing one, especially if the subject matter of the research addresses issues of risk such as substance use and sexual risk taking. Well-intentioned researchers conducting work with gay men have struggled with this element of their studies, failing often to recognize that humans are savvy, that gay men are sophisticated, and that for many a monetary incentive is irrelevant. What many of these men want is to be heard, to be respected, and to contribute to a program of study that might ameliorate the blow of the AIDS epidemic in their community. They can see through researchers who are not well intentioned, and they know more than most groups how to work around the system.
Recruiting men for Project Gold, the research work that laid the foundation for this book, and for the book project proved to be a relatively easy task. Both phases of Project Gold, which included a sample of 200 men, took only 5 months to complete (Halkitis, Kupprat, et al., 2013), and many of the men who participated in the research project expressed awe and surprise at the fact that we wanted to “study” them. After years of being prodded and poked, filling endless vials with their own blood, being swabbed, and being scanned, the men who participated both in our preliminary work and in the AIDS Generation interviews just wanted to be heard. For many of the men, the experience of being interviewed and asked questions about their lives was an honor and point of reflection. When asked to describe himself, Eddie, one of the15, said,
For all 15 men, there has been a lifetime of reflection, of wondering, of considering, and this was an opportunity to tell their stories.
Wow. Um, actually, I love that question. I was asked—asked that question, um, several years ago and I was homeless and, um, trying to get into a shelter. And, um, I wasn’t sure exactly what to tell them, but now I do.
Recruitment of the men whose stories you will come to know in this volume was undertaken by my team. Unlike large-scale quantitative studies that require systematized and overconstructed sampling paradigms to ensure generalizability of results and the power of our analytic procedures, we were motivated by identifying men who could effectively share their life experiences and also whose lived experiences represented different aspects and realties of the HIV/AIDS epidemic for the last 30 years. In such historical accounts as in recent documentary films such as David (p.17) France’s powerful How to Survive a Plague, one often learns about the experiences of upper middle- and middle-class White men, engaged in activism, and with social capital that empowered them to survive. Certainly this is one take of AIDS, but we sought more than these experiences. In that regard, we cast the net widely, both drawing on the men who participated in Project Gold and reaching out through near-peer and electronic and social networks (e.g., Strength in Number [SIN] New York City) to recruit our sample.
The study team screened all of the men who were interviewed. Our criteria for inclusion were prescribed but somewhat wide in scope. These criteria included being a gay man diagnosed with HIV or AIDS prior to the implementation of highly active antiretroviral therapy (HAART) in 1996, approaching or in the middle-age period of life (40 to 60 years old), and being a young adult at the time of diagnosis. Using these parameters, we were able to identify gay men who were first aware of their status in the 1980s and early 1990s before any truly effective treatment was available. Because our focus was on gay men, we did not apply the Centers for Disease Control and Prevention (CDC) epidemiological and behavioral criterion of “men who have sex with men” (MSM), which ultimately undermines the well-being of my population (Halkitis, 2010a), but rather men who were firmly situated in their sexual identities as gay. The story of The AIDS Generation is the story of gay men.
Sandy, Francesca, Jessica, and Molly, my research assistants, provided potential participants with information about the book project, which was approved by the NYU Committee on Activities Involving Human Subjects (i.e., institutional review board). Men were also screened for eligibility criteria and were asked to provide a brief description of their lives as HIV-positive gay men. Based on these initial conversations, the interviews were scheduled for 2-hour blocks of time at my office on Washington Square.
On the day of his scheduled interview, each man was greeted in the lobby of my office building by one of the research assistants. Each was escorted to my office where I welcomed him, and then undertook the consent process with the assigned research assistant. Of note is the fact that all of the men arrived on time or early and on the occasion; when one was delayed due to subway congestion, he called to inform us of the situation.
At first, most of the participants appeared hesitant in their approach with me. This was perhaps due to a perceived power differential or because they (p.18) were entering the hallowed walls of NYU to take part in a study. Perhaps it was due to their uncertainty and potential anxiety in recalling their life stories, or because they were uncertain on how I would approach this work. However, any anxiety quickly dissipated as I explained to each my own stories of loss in the age of AIDS, grappling with my oncoming middle age, and my desire to write the book to honor the men of our generation. To Hal I explained the purpose of my work, as I did to the other study participants, as follows:
I’ve been in HIV behavioral research for the last 15 years, the last couple of years really focusing a lot of attention on older positive gay men, and decided that one of the things I really wanted to do in addition to the research is give voice to our generation of men and what we’ve been through…and how resilient we are and to celebrate us. And so I put together a book proposal….So I am in the process, and you are, as you heard from Francesca, number six I’m talking to. I’m going to speak with 15, maybe 20 men…and then sort of put it together for a book that’s going be called The AIDS Generation. So during the course of our conversation today we’ll just talk about a variety of things, whatever you feel comfortable talking about or that you want to share with me.
The qualitative data of Project Gold informed the development of the interview protocol. The protocol, as originally conceived, was semi-structured in nature, allowing for maximum flexibility in the data collection such that the men with whom I spoke could share their stories and experiences. Eight main themes or life experiences were explored: (1) the initial diagnosis with HIV or HIV/AIDS, (2) loss due to the epidemic, (3) strategies for survival in the absence of effective treatments, (4) both active and avoidant coping strategies to deal with the epidemic including the use of substances and sex as means of coping, (5) activism and community building in the AIDS era, (6) the breakthrough of effective therapies in 1996 and the aftermath of these advances, (7) aging as a gay HIV-positive man, and (8) understandings of survival. For each of these themes, I developed a set of probe questions to explore the concepts more fully.
Throughout the discourse with each participant, these main themes were explored, although not in a linear or an overly prescribed fashion. I centered each interview on each man, allowing him to relay his stories, experiences, and understandings in the manner with which he was most (p.19) comfortable, and to use his own logic to relay the ideas and make sense of the events in his life. Although my goal was to explore each of the domains, these explorations varied from participant to participant. As a result, each session was a conversation, a natural discourse between two men, rather than a data collection session driven by the agenda of the researcher. The questions and probes sat face down on the table. Not once did I turn to these probing questions, and by the fifth interview I realized that these questions that were placed on the table, at first as reassurance and backup for me, were not required.
My questions, when posed, sought to clarify and define and to seek a deeper meaning in the words the men were using to fully understand the thoughts and logic associated with their words, how they understood these words, and the meanings associated with the words on cognitive and socio-emotional levels. A typical interaction is shown below:
This approach to the interview process necessitated that I release my agenda, focus on every word each man shared and every sentence that was uttered, and reflect on what was being said and how messages were conveyed. This process, as I explained to the participants, would create a situation that had the feeling of a conversation, a discussion between two peers who are sharing life events. In that regard, I too shared from my life during the course of the conversation, demonstrating my own vulnerabilities and struggles as a gay man who came of age as part of the AIDS Generation. After Richard, another of the 15, described his first sexual experience with a man in which he expressed terror, his uneasiness in retelling that event was apparent. To diffuse this unsettled feeling and to support the sense that he was not alone in such experiences and feelings, I interjected as follows:
And what I do on a daily basis is make sure that I represent who I know I am.
Which is will?
Which is will. Wisdom, integrity, and love.
What do you mean by wisdom, integrity, and love?
So at 18, something similar happens to me. I drop off my girlfriend at the time from a date, and I’m walking on the way back home to my parents’ house in Queens. I don’t know how I know this, but some guy tries to pick me up. We end up going to his apartment. There’s lots of kissing and making out and sucking. And I’m terrified, right, for the next 3 weeks. And this is a month—the month before I have to go to college in Columbia in the big bad city across the river.
This approach to the collection of data resulted in narratives that were each unique—15 idiosyncratic stories and experiences that gave voice to each of the men with whom I spoke, that celebrated the life of each man, empowering each to share his tales with me with no fear of being reduced to a point of datum, a unit of analysis. From the perspective of a traditional social science research and analytic paradigm, the end product—the data—was much more challenging to analyze, making it more difficult to determine commonalities and themes that cut across the experiences. However, the data were also more honest and true to the experiences of the men, thus outweighing the often rigid and prescribed approach to the collection of narrative data that results in disconnected, fragmented stories that lack meaning. Meaning making ultimately was the goal of this work, and the approach that I applied allowed me to achieve this goal and directed me to attend to the narratives rather than my own agenda.
Carol Gilligan describes her approach to her work on the moral development of women as “grounded in listening” (1993, p. xiii). Like Gilligan, I sought to listen to how each of the men explained and described his life living with HIV. I listened for how each spoke of himself as a gay man, as an aging man, as an HIV-positive man, and how each understood the intersection of these identities—an aging, gay, HIV-positive man. I also listened for how each man negotiated the traumas of living with HIV at a time when the disease was considered, and in fact was, a death sentence; living as a gay man coming of age when the gay rights movement was only in its infancy; and living as an older man in a culture obsessed with youth and virility. How did these men negotiate their lives in their young adulthood when they first were diagnosed with HIV? How did they experience their lives as young men who had to attend to the realities of a chronic viral infection that weakened their bodies and aged them rapidly? How did their HIV status direct their lives? How do they understand the perpetuation of the HIV epidemic in now three generations of gay men? Mostly, I listened for how each man understood his survival after living with HIV for 20 to 30 years.
The approach to data collection also allowed me to develop a camaraderie and kinship with these men—my peers—who have lived through the realities of the AIDS epidemic from the very onset in the 1980s. These life experiences bonded us, our developmental stage and ages created a connection, and the experiences of pain we shared created a sense of relief from retelling these stories with someone who truly and deeply understood the often-painful and debilitating events in our lives. Ultimately, what bonded us most was the mystery of why we were in that office at New (p.21) York University (NYU) together when so many of those we knew had lost their voices and their lives during the last three decades. The experience for me was encapsulated perfectly by Michael Callen (1990, p. 21), who describes the interviews he undertook with long-term survivors in the first decade of AIDS with the following powerful statement: “As long-term survivors began to crawl out of the woodworks, I realized that before I interviewed them, I’d have to come up with a list of questions. In order to do that, I would have to do some soul-searching: Why did I think I was still alive?” During every interview this statement and sentiment came to my mind and served as a reminder that the journey I was embarking upon was profound and significant, and that unlike Michael Callen, I had been afforded the opportunity to be interviewing these powerful men in 2012, when AIDS as an immediate death sentence had become a thing of the past. It also reminded me of the interviews we conducted at the onset of my career as an HIV behavioral researcher and the number of those men we had interviewed who had since perished (Halkitis, Gomez, & Wolitksi, 2005). Mostly this work helped me to focus on my own values. My life was changed during the time when I interacted with these men and wrote about their spectacular lives.
It was also apparent that the approach I used was unfamiliar to some of the men who previously had participated in research studies or who were research savvy. This created uneasiness for some in their roles as research participants, as noted most clearly at the conclusion of the interview with Ralph:
Ralph’s statement also underscores the degree to which the men of the AIDS Generation understood and experienced this project as an opportunity to share their stories. They need to be heard—fully heard.
Well, I would hope to think that the information I have given you is something that I would like to be representative of who I am, but you know, what I told you I’m sure there’s a hundred million things in my head that I wish I would have said. I mean, I’m happy with what I told you, but, um, I hope I didn’t delete or not say anything about things that I feel are important and need to be said.
Each of the 15 interviews was transcribed by an agency we had subcontracted. When the interviews were returned to us, the transcripts were reconciled with the digital recordings by the research team to check for (p.22) accuracy. Corrections were manually made in the transcripts of words and terms, which might have been lost in transcription because the word processors (both person and software) were unfamiliar with the jargon being used by the study participant.
My approach to the interviews was highly personal. Not only did I conduct the interviews and observe the men as they sat across from me retelling their stories, but I also reimmersed myself in the conversation on several occasions over the course of several months, both by rereading the transcripts and examining the words with my eyes and by relistening to the interviews and examining the words with my ears. I purposely reexamined the interviews in varying orders, at different times of day, and in different environments, opening myself up to the possibility that something new would emerge in my reviewing of the “data.” As I listened to the interviews, I closed my eyes on many occasions, visualizing the actual interview, what each man was wearing, where he was sitting, how he looked or didn’t look at me as we spoke, how he reacted to my questions, when he fidgeted, when he cried, and when there was a break or a change in his voice. Most of the men also provided me with electronic photos of themselves, which I kept open on the desktop during the writing process.
As I indicated in Chapter 1, I did not utilize any one particular approach to the analysis of the interview, although the ethos of this work was highly influenced by the work of Carol Gilligan. In 1993, Gilligan wrote a Letter to Readers, as a prelude to her volume In a Different Voice, in which she states (p. xii), “In the years since In a Different Voice was published, many people have spoken to me about their lives, their marriages, their divorces, their work, their relationships, and their children….Their experiences, their examples of different voices, and their ideas expand and complicate what I have written, often in highly creative ways.” This sentence is powerful and meaningful to me. The interviews that I have conducted have pushed me to think in a more expansive manner about the task in front of me.
As I embarked on the writing of this work, I had somewhat clear notions about what I wanted to write. I had a prescribed table of contents, which I had proposed based on the thematic coding of data from Project Gold. Topics and themes had emerged from these original data that provided me with a very clear outline for the format of what I wanted to write. In fact, in the ensuing chapters, these themes from Project Gold are explored as a means of framing each of the topics. And although I remain true to this original structure, what has evolved over the course of the interviews and the readings is my approach to conveying the findings from the interviews (p.23) of the 15 men. Rather than simply retelling events and stories and quantifying emerging themes, I attempt instead to share each man’s voice in relation to the topics addressed in this book. For example, while conveying how each man first found out about his HIV status, I of course attend to the circumstances and contexts of this monumental event, but attend equally to how each man tells this story, how he conveys the information, and his emotional state in sharing this event in his life—to his voice.
My approach to the analysis of the 15 interviews is radically different from the one my colleagues and I used in our edited volume, HIV + Sex: The Psychological and Interpersonal Dynamic of HIV-Seropositive Gay and Bisexual Men’s Relationships (Halkitis, Gomez, et al., 2005, p. 10), where we utilized a quantitative analysis software and described our analyses to the qualitative data that constitute the book, as follows: “Authors of individual chapters began their analyses with the pre-coded data set. In most instances, the authors organized their analyses around a limited number of standardized interview questions or used the presence of global codes to identify relevant responses regardless of where they appeared in the interview.” I cite this example of my previous work not as a means of commenting on any shortcomings. That was a very different type of work, directed primarily by positivist paradigm. The product was powerful but very different from the approach and my goal in this book. At the conclusion of each interview for this current book, I provided each man with a copy of the edited volume, which many of them asked me to sign. My purpose was to share with each man a personal token but also to provide a framework for the current project in which his story would be depicted. I explained this to Eddie as follows:
Approximately 3 months after the interviews were completed, we gathered the men as a group for a follow-up discussion. Twelve of the 15 attended, and the meeting, which took the format of a focus group, sought to clarify some of the issues that emerged from the individual interviews and provide an opportunity for the participants to share their stories and their experiences with each other. Specifically, we examined two main issues—strategies for survival and the process of aging. I was also directed by a desire to examine each man’s voice within the context of a group of peers, (p.24) building on the voice I had heard in the one-on-one interviews. Finally, I wanted to provide a venue for the men to meet each other and to celebrate each other. This gathering was also inspired by the thoughts of one of the men, Kerry, who clearly articulated the need for a space for older HIV-positive gay men to meet each other outside the context of a support group or a social gathering in bar: “Maybe it should be more like, not like necessarily the T Dance, but maybe there should be a function or something that people can socialize at regularly. Even if it were once a month or something.” For 2 beautiful hours, we sat together, talked, cried, and shared ideas and experiences.
So I’m going to give you my card and I’m also going to give you a copy of a book that I wrote in the late ’90s, which is just kind of like stories of positive men, but it’s kind of—it’s not like the book I’m going write, but it is to give you a flavor of the book that I’m going to write.
These 2 hours we spent together created a new “band of brothers.” Each man demonstrated great respect for his peers, and many wiped tears from their eyes as they shared their life stories. Each attended to the comments of the others, rarely interrupting, and always listening and reflecting on the words of the others. In my years conducting focus groups such as this one, I was required to manage and coordinate the efforts of the group. In this case, my oversight was limited only to keeping us on schedule because it was clear at the end of the 2 hours that this session could have been extended to 4 or 6 hours given the level of engagement.
At the conclusion, all of the men exchanged names, e-mail addresses, and other contact information to stay in touch with each other. Their camaraderie was natural and easy and simply beautiful to witness, and many exchanges have taken place within this group. This session was also digitally recorded and transcribed, and elements of that conversation are utilized throughout the course of the volume. When I do draw from this conversation, I purposely retain the interjections of others while one of the men was speaking to demonstrate the dynamics in the room.
Post–focus group and throughout the writing of this volume, I also have been in electronic communication with the men. My communications were undertaken via e-mail when I confronted a passage of text in the interview or focus group that required further clarification. In every instance the man to whom the question was posed responded almost immediately. On three other occasions I posed a question to the entire group and asked the men to react and reflect on an idea I was considering. Again, elements of these correspondences are included in this volume.
The Men of the AIDS Generation
In the chapters that follow you will come to know the 15 men, the long-term survivors and their stories. Their words are unadulterated (p.25) as the thoughts and the voices of each man are shared. The narratives are never blended to create composite characters so as to enhance the effect of the work. In other words, the story of each man stands on its own, blemishes and all, with utterances, and stammering, and pauses in thought so each reader can fully experience the realities of each man. The only modification made has been to the name of each of the participants and their close relations, and a limited amount of other identifying information that could reveal who they are in order to respect their privacies.
At the end of each interview and after each man had departed, I reflected on the interview and commented directly into the digital recorder. These reflections were my immediate reactions to the interview that had just concluded. I allowed myself to express freely about the interview, the stories that were shared, and my own personal reaction to each man. Thereafter and based on my repeated readings and listenings, I came to my own knowing of each man.
Early in my graduate education, I was introduced to the Up Series British documentaries, the first of which was made in 1964 by Granada Television and was named 7 Up. The series has lasted for 49 years, following a group of 14 British children from age 7 and every 7 years thereafter (56 Up was released in January 2013). The major thesis of this work is informed by the Jesuit saying “Give me a child until he is seven and I will give you the man.” This understanding of human development is one that also has highly influenced my own work and thinking throughout the last two decades. Thus, in describing the 15 men who are members of the AIDS Generation, I provide some key demographic information for each and then delve into their childhood stories—who they were as children, or, more accurately, how they retell the stories of their lives as children. I come to understand the lives of these HIV-positive gay men and their lifelong experiences, their survival, and their resilience through the lens of their formative years in childhood and adolescence. The lives of these men as children often shape their adult lives with HIV.
For Ralph, a 53-year-old Latino man, who has a striking resemblance to Queen front man Freddy Mercury, the experience of AIDS for his generation of gay men is akin to the Holocaust: “Like the Holocaust, it was our own personal little holocaust, and we had to go from where we lived into the ghetto, being San Francisco.” In fact, as an adult gay man living with (p.26) AIDS, Ralph found himself drawn to the concentration camps of World War II: “I’ve been to the ghettos too. But I’ve been to Auschwitz.” For Ralph, the experience of HIV is complicated by coinfection with hepatitis C, compromising his health to an even greater extent.
A mother born in Texas to Mexican immigrants and a father of German French extraction raised Ralph in Salt Lake City, in a family of seven children. Despite being raised Catholic, Ralph describes his upbringing as informed by Mormonism, which he views as having had a favorable impact on his life: “Mormon was definitely an influence because everybody was Mormon….I have to give credit to those horrible people because their influence is probably what kept me away from drugs and alcohol when I was a kid.” In the focus group, Ralph described himself to the others as follows:
In fact, Ralph worked as a bartender on Castro Street in San Francisco at the height of the epidemic.
I’m Ralph. I was diagnosed—I’m not sure of the date. I actually don’t remember the date. I just remember the experience though. But I’m guessing early ’80s. I’m gonna be 54 in October. I like to round up these days. just seems a lot easier than rounding down like it used to be. [Ralph laughs] I’ve been living in New York for maybe 15 years, San Francisco for 15 years before that. And I became HIV-positive in Utah, so that was a kinda scary place to have that happen. Quickly moved to California.
Throughout the course of the interview, Ralph was very concerned about doing and saying “the right thing,” seeking to please me with his narratives. He relied heavily on his self-understanding as someone who is not very intelligent but who had to rely on his looks, despite the fact that he was poised and articulate and insightful throughout the course of the interview. When I pushed back and commented on his perception of his own intelligence, he shied away and lost eye contact with me. Ralph attributes his lack of intellectual achievement to his parents, indicating, “I had lousy parents who never really motivated me….”
Repeatedly, Ralph described how he depended heavily on his looks throughout the course of his life and believed that any successes were tied to his appearance. In his older age, he has become less self-assured in this regard, sadly suggesting that sexual partners are disappointed when they meet him. Interestingly, despite a lifelong reliance on looks, Ralph now scorns the fact that many in the gay community judge by appearance, and thus immerses himself in contexts where he judges his looks at the higher (p.27) end of the spectrum. Speaking of a specific social gathering of gay men, Ralph said: “I think that group of people is less attractive and for some reason that’s more comfortable for me.”
When asked to describe himself, Antoine, who has been living with HIV since 1986, said, “Antoine is a 52-year-old African American man, who is actually gay, born this way, thank you.” Like many of the other men, Antoine’s recollection of his life as a gay man traces back to an early childhood age, although like the others, he could not articulate what he sensed or thought or believed at that time:
This sensibility and sense of humor and love of life expressed in this comment were evident throughout our conversation, as Antoine spoke with great honor and respect for his life as a gay man growing up in Brooklyn, New York, and whose formative years and emerging adulthood were informed by the relationships he developed cruising for sex in Prospect Park, which he describes as “Mecca.” This self-assuredness and confidence as a gay man is clearly fueled by the support and acceptance he experienced from his mother as young boy, who had passed away the year prior to the interview:
I mean I—I can go back to honestly saying to you, I had my first gay thought at 4 years old, but I didn’t know it was a gay thought. I knew I was gay in kindergarten when I raised my hand to ask my teacher to go to the bathroom because I wanted to look at the boy that was with my cousin, who was, I thought, who was just absolutely gorgeous.
This self-confidence was evident as he spoke of his life living with HIV, including the support system he had with his circle of friends—his family he had developed as a young man in Prospect Park, who he refers to with terms associated with family relatives: “My gay mother was named Gene. My gay father was named Ronald, who was going to school to be an attorney. He was White. My gay aunt, Wilson, was a—how do you say it? He worked in a childcare agency.” And at the same time he speaks with great sadness about his gay family, recalling the circle of 40 that constituted this family in 1985 and then reporting, “And right now, it’s just me and Bianca,” the rest having died of AIDS.
Because I believe my mom always knew. Because I used to state to her, no African American mom buys their son a Barbie doll record player at 7 years old for a Christmas present.
And she gave you that. Did you ask for that or—
No. She said because it was the last thing in the store, and she didn’t want me to have—didn’t, she didn’t want me to not have anything for Christmas. And I’m like, “Okay, I can get past the, um, Barbie doll record player, but the first 45 you bought me was Aretha Franklin’s I’ve Never Loved a Man the Way I Love You.”
And I’m 8 years old.(p.28)
[Laughs]. And at 15, when she asked—when I said to her that I was gay and that I would not make her any grandchildren, she said, “Oh, I already knew that. I was just waiting for you to catch up.”
Interesting. It’s almost like she was giving you like permission with the record player.
It also is evident in how he navigates social contexts, even when a colleague’s homophobic husband questions Antoine’s sexual orientation because of Antoine’s depth of knowledge about sports. For Antoine, his survival and his ability to overcome the many challenges in his life are understood in terms of his sexual orientation. Antoine perceives that being gay was a source of power, which emboldened him to move beyond the established norms of the neighborhood and culture in which he was raised and which has led to a life of self-acceptance and contentment, first inspired by his mother and then by his gay family formed in Prospect Park. When asked how he feels about being an older HIV-positive gay man, Antoine smiled and said:
More than once during this initial interview with Antoine I was reminded of our brother, gay activist and educator Marlon Riggs, who died of AIDS (p.29) complications in 1994, and his 1989 brilliant documentary about an African American gay man, Tongues Untied.
I’m loving it. I never thought it would be this wonderful. I’m comfortable with myself and I’m happy with my state of mind. And all the things that was once said to me that I couldn’t do—and if it wasn’t for the fact that I was gay and am gay, it would have never happened. I finished high school because I was gay. Because my straight friends didn’t want to go to school, and when they said to me, “Why are you going to school?” I wrote down the word “bedroom,” [and] two of them said, “bedrock.” I said, “Yeah, that’s why I go to school.”
Gianni was the first man interviewed in April 2012. He is 49 years old, the child of European immigrants, born and raised in the outskirts of Manhattan, New York. Gianni is highly educated, holding advanced graduate degrees. A self-made man, Gianni has Sylvester Stallone/John Travolta looks, works and speaks with confidence, and is highly knowledgeable about the medical aspects of HIV/AIDS. His approach to the disease is an intellectual one, and he relies on his cognition and logic to explain his AIDS journey, rarely allowing emotion and affect to enter his recollections, which he describes as compartmentalizing. Gianni was diagnosed with HIV/AIDS in 1988, although he traces his infection to 1981.
When Gianni speaks of his upbringing, the theme that emerges is one of control and management, skills he needed to develop as a young child because his parents assumed no responsibility other than housing and feeding him: “I mean, I’ve just been self-sufficient from a very young age,” and despite these demands, he indicates, “And it’s served me very well,” suggesting that his life successes are directed in part by the expectations in his childhood.
Gianni describes his childhood as one where he was asked always to “be a man” as his parents navigated their new homeland with anxiety and apprehension. This condition persisted throughout his adolescence and as he prepared for college:
For Gianni, handling and managing these responsibilities in his childhood were not seen as an option but as an expectation: “I feel like everything in my life I’ve worked for myself.” This approach of control and overmanagement in his life also informs how he subverted his sexuality throughout his adolescence:
I had to navigate figuring out how to pay for school ’cause my parents were useless. Had to get a student loan, had to get student, you know, uh, federal assistance, state—and which was different at that time. That’s why I ended up paying nothing for college at the end of the day, but I had to do that on my own. Like I had to be the adult taking care of this stuff.
Gianni’s entire adult life is informed by AIDS, being infected during only his second sexual encounter with a man, and having lost three of his five boyfriends to the disease, one in his 20s, one in his 30s, and one in his 40s. Gianni, in fact, recalls the story of his infection in great detail and describes the death of Tom, the man he was involved with at the time, who had infected him, and whose death he witnessed as a 22-year-old in 1985:
I didn’t even know what to do about being gay, but I didn’t—so here’s the gay thing. So the gay thing was so I was pretty sure I was gay because I felt (p.30) attracted to men, but I did nothing about it all through high school because I didn’t think I could because of where I was growing up and because I wanted to fit in. And because I wanted to go to prom and I wanted to have a girlfriend and I wanted to do what every other American boy was doing. Right. So and I had sex with women, and I don’t know, that was fine, but I kind of knew something wasn’t really all there for me with women. And it had gotten worse, like from 14 to 18 it got—it was sort of like this like drum—the way I can—I—I sense is that it was like this drum beat that got more and more and more intense the older I got.
In the last 5 years, Gianni has been married and indicates, “After all of this death and loss, I feel like I finally have the life I was hoping for at 20. AIDS really derailed all of that.” During our interview, Gianni often used pop music to describe his feelings, as will be demonstrated in his statements throughout this volume.
Right, he had cancer, and that’s what he died of. But I was pretty sure from what I had been reading at that point that it was AIDS. And, you know, I completely—I was petrified but completely suppressed it and didn’t think about it because there was nothing I could really do at that point in time about it. But I knew in the back of my mind that I was probably positive.
Bobby and John
In the second week of April I interviewed Bobby and John, whose stories had become intertwined in the months that preceded the interviews. A romantic couple, Bobby and John spoke of their love for each other and their upcoming nuptials, despite the fact that they had only met each other within the last year.
Bobby, 47 years old, is a child of the Bayou who spent most of his formative years in Louisiana and describes his place of birth as “a poor Black town” (although he is White); he works as a special education teacher in the public school system of New York City. His work as a teacher may be (p.31) connected to Bobby’s love of school, which he recollects as he describes himself as child:
Bobby is tall, lean, and extremely handsome, and one is left to wonder how many heads he turned and hearts he broke in his lifetime. Bobby relied heavily on his sexuality to convey his stories, and his story of HIV/AIDS was often nested within the context of sexuality and his own sobriety. Even his recollection of childhood is highly sexualized: “…I had three brothers and we bathed with my father until puberty”; however, he does not understand these experiences as sexual abuse, even when I pressed the issue and indicated that such behavior might be seen as sexual abuse in the present historical moment.
I was an angel. I was never in trouble. I made more than straight A’s. I said “yes, ma’am” and “no, sir” and I made my bed, well I wasn’t so neat, but I ate and didn’t talk back and I loved my homework and I loved my school. I was just a good, quiet kid. Never broke anything. I can tell you the five times I was in trouble in all of elementary school.
Bobby recalls the onset of his sexual life at age 15 when he was able to finally drive and used the family car to frequent a rest stop approximately 20 minutes from his home where he could engage in sexual encounters with men. His recollection of these events is somewhat steeped in shame, which he openly stated during the interview as he recalled his time spent having sex at the rest stop at age 15:
Eventually in the conversation, Bobby came to recognize that he was the victim of abuse as a child, despite his own sexual desires:
You know, I was telling John, my fiancé, who’s also, who you will also be interviewing, you know that, it’s been a while since I really had this conversation out loud about this time in my life and I said it’s really—I’m interested to see where I go with—what’s going to come out of this because I want to obviously tell the truth but I want now [to] try to tell the story with as little shame language as I can because it was so steeped in shame [Perry: Yeah] for so long. Um, what happened—the bare outline is I became the bell of the ball. I was there all the time, guys knew I would be there. Guys came; I had an attorney from Lafayette, Louisiana, who used to drive over.
As for many of the men, more than half of Bobby’s life is defined, in part, by HIV: “I’m 47, uhh, 24 years. So now I’ve been HIV-positive longer than—well, more than half my life now as of May of this year .”
Lafayette is about 2 hours and the John Deere dealer, hello, can you get more macho than that, from Pascagoula Mississippi about an hour and (p.32) 20 minutes. He used to drive over and, I mean to see me, to be a pedophile, you know, to—to—to [be] with me…specifically looking for this 16-year-old. I guess at that point I’d still be—mm? Still a child.
Bobby’s 55-year-old partner, now husband, John, is more introspective than Bobby. Much of his meaning making is tied to his sobriety from alcohol and other substances, and he often became overwhelmed with emotion as he shared his life events. Use of alcohol and being gay permeate his understanding of HIV and his life overall, as evidenced in this initial description of himself:
Uh, let’s see, um, well, I was born in—on Long Island, grew up there most of my life. I think, um, I’m firmly convinced that I—I was born gay, and, uh, and—and born an alcoholic. And, uh, I—I think that the defining moments in my life were figuring out, you know, in second grade or something, that I had these thoughts that made me different from others about men, and then at 15 when I discovered alcohol, and then the—the—the journey from there took a lot of twists and turns, and, uh, um, and I was, you know, it really opened up the alcoholic in me.
John was raised by highly educated and successful parents on the East End of Long Island, his father a physician and his mother an artist, whom he described as “open-minded, liberal, and accepting” and who, according to John, “outed” him as gay “with a great deal of dignity and love and respect” later in his life during his college years. “I come from an amazing family,” John recalled.
However, John’s experiences within his family were not similar to his life outside of his family, where he was bullied as a child because of his size and because he was perceived as gay. Despite the support of his family, these bullying experiences are informative of how John perceives his place in the world, including his subsequent reliance on alcohol and other drugs:
These experiences drove John to try to “fit in.” John turned to body building, inspired by Charles Atlas, and by age 14 he had grown in size, which enabled him to defend himself from those who victimized him, including the “ring leader” who later in life admitted that he too was gay. The body building was also accompanied by attempts to have girlfriends and sex with women, behavior that led John to his life of alcohol and drugs as a means of coping with a situation that felt unnatural and uncomfortable: “Well, in high school it was—I very rapidly—well, especially after I discovered booze and—and drugs, let’s say discovered booze and drugs, I realized that if I was stoned or drunk I could have sex with a woman.”
You know, it—it always amazes me that, uh, and—and it’s still—it’s—going back to these times is always very painful, and I do it on a regular basis because I speak for Love Heals, so I go to a lot of high schools and colleges and middle schools and tell my story. But, um, and—and a part of it includes talking about what it was like for me being gay in middle (p.33) school, because they knew, they knew right away….I mean, no, I wasn’t this, you know, flaming little wispy thing. Uh, I don’t know how they knew. I—I just—I wasn’t into sports or anything, but, um, they knew, and they started, you know, in middle school. When I went from grammar school to the middle school, it included kids from other towns, and it was a group of kids from the next town over who singled me out, and started the bullying, and the “Fem, faggot, gay boy.” I didn’t even know what those words meant, you know.
But John’s early life experiences, like Bobby’s, were also shaped by sexual abuse perpetrated by another man, as well as by his attempts at relationships with women and his use of alcohol and other substances. To date, John believes that he is able to perform with any sexual partner when under the influence, and it becomes clear that the use of substances was initiated by a young man who, although he had the love of his family, was emerging as an adult in a homophobia-laden society, despite the strides made in the 1969 Stonewall Riots that gave rise to the gay rights movement. This is demonstrated clearly in these experiences that were occurring in the early 1970s:
Yeah, and—and that’s when I—shortly thereafter, 16 maybe, had sex with a woman, also was having sex with men, I started sex with men early because I was—my—my next-door neighbor was fondling me at 13, and having sex with me, right—and a much older man, and that’s how—that’s when sex with men started. But, uh, I did, um, was able to, if I was fucked up enough, have sex with women. That—that holds true. Since I’m sober, I’ve never had sex with a woman, which is why I definitely define myself as gay, but if I’m fucked up enough, I could have sex with anything, you know, basically, anything or anyone.
I came to know Richard, a 58-year-old actor, pianist, and singer, through my colleague Dr. Antonio (Tony) Urbina, a very well-respected and accomplished HIV physician and researcher, who codirects St. Luke’s Roosevelt Spencer Cox Health Center. Richard is a strapping man, over 6 feet tall, with penetrating blue eyes full of enormous wisdom and enormous pain. A son of a Baptist minister who was born in Arkansas and raised in Anaheim, California, and Buna, Texas, Richard’s HIV story is one of a pioneer, being the creator of the first AIDS blog, a diary of his life that he developed in the mid-1990s, which were indeed the early days of the Internet. For Richard, many of the critical moments in his life were tied to both his music and his faith, including his first sexual experience with another man:
When I was 19, I went on a missionary trip to Mexico. I spent the summer in Monterey, Mexico. And I was visiting an older couple. They were missionaries there. You know, to say they’re Catholics and turn them into Christians. And uh, on our trip to Mexico City, we went to a larger church, and there was a musician there named Florencio, and he was especially beautiful. And he said, “Oh, I—if you’re going to sing, come to my apartment, and I’ll play the piano for you.” And the minute we got in that room, we were all over each other.
Richard attributes his survival from the ravages of AIDS both to this diary and more importantly to music—the music that he wrote and performed about his disease. It is when he speaks about music that Richard becomes most animated, suggesting the centrality of music to his own identity. Richard describes many aspects of his life, including his emerging adulthood, with regard to music: “And then my education consisted of two years of Baptist college, which is basically a glorified Sunday school with a choir and math. And uh, uh, and then I went on the road as a musician.”
Thus, Richard’s HIV story is also a story of music. By mid-1994 Richard’s health had very much deteriorated to the point that he believed he would soon die, and he describes that period of his life in great detail as he establishes the context for his understanding of how music saved his life:
I got out of the hospital and couldn’t walk, so I had to relearn how to walk just because I was so physically depleted. So I began to rebuild my body one step at a time, one step, back down to sleep. Two steps, sleep for the whole (p.35) day. And um, all the people in my office were amazingly supportive. Well, the year before when I told them—when I found out I was HIV-positive, I told everybody in the office immediately. I didn’t hide it at all. And uh, got an incredible amount of support from all my friends and the other musicians and everybody else who I knew. Once I landed in the hospital, I had to quit because I physically was unable to work….So now I’m—I’m spending this year—I was spending this solid year or more doing nothing but trying to build my body back up to, um, some semblance of functionality. I make heavy use of the fax machine. I’m faxing all of my friends. I’m faxing all these people who I knew at NAS, and I’m maintaining massive amounts of communication with everybody who—who I used to know and talk about the progression of the disease and talk about them. And just trying to stay connected to the rest of the world from my hospital bed—I mean, from my—from my home. And spending an inordinate amount of time on the BBS learning about it. And in—and—and also, the other thing I did was, um, when I—when I was either barely functional, I could get up and walk, I would go intern, like an intern for a music agent at one point. And I just sat at his desk, and all I did was just transfer names from here to there. Transfer names from here to here, and just do research work where I could sit at a desk and a computer and just do input because I needed to get up out of the bed and go somewhere and do something.
However, the most significant point of transformation for Richard was the moment he again played music, which is how he understands his entire life, successes, and ultimate survival from near death. Throughout his narrative, Richard refers to the musical he had written, a work he first undertook as a means of combatting the disease and rebuilding his strength in the mid-1990s.
For 51-year-old Hal, the voice that comes through is that of facing and confronting adversity: “I’ve always considered myself someone who runs into a fire to save the baby and as far as AIDS and HIV have been concerned I’ve run to it rather than away from it.”
On first meeting, Hal presents as extremely confident. He is strikingly handsome with piercing blue eyes and a well-developed muscular body, traits he uses in a flirtatious manner. This demeanor came across both in our on-on-one discussion and in the focus group. Hal swaggers with confidence as he enters the room; in gay circles he would be described as butch. (p.36) However, within moments of speaking and sharing, Hal’s emotional and intellectual depth rise to the surface and he becomes much less reliant on his physical prowess, and an incredible tenderness underlies his thoughts, complementing his hypermasculine appearance.
Hal describes himself a “miracle of modern medicine.” HIV-positive for at least 28 years, having been hospitalized with his first Kaposi’s sarcoma lesion in 1984, and recently married to his high school sweetheart who is HIV-negative, Hal led a young life that was often defined by unsafe sex and the use of substances, all of which radically changed at the time of his diagnosis: “I had a history of substance abuse and when I was diagnosed I stopped doing drugs, drinking. As soon as we knew about transmission I stopped having unsafe sex and began having what, at GMHC, we were calling safer sex.” In fact, Hal even applied his talents to the fight against AIDS working at GMHC, the world’s oldest AIDS service organization founded by a set of inspiring men including Larry Kramer, who documented the early life of the organization in his play The Normal Heart (2000). Hal understands his approach to challenges, including HIV, as genetic:
For Hal, like many of the other men with whom I spoke, emergence into adulthood and into sexual life and sexual adventurism was shaped by experiences in childhood with older men. Growing up in Connecticut, Hal describes his first experiences and the onset of his sexual life as follows:
I come from a family that runs into fires….They are firemen, nurses, emergency medical technicians….I was raised to volunteer, to be a Boy Scout….I have probably normal fears when it comes to everyday life. But when it comes to crisis or stresses I have a very strong lack of fear.
(p.37) Hal’s ensuing struggles led to his ultimate confrontation with sex and substance use after his diagnosis, leading to a life of sobriety but ongoing sexual escapism. Throughout the 30 years of his adult life, he continued to have a relationship with his now husband, and within the past 5 years, their ultimate decision to become a couple has shaped his life as he has emerged into middle age. The relationship with his husband also permeates all of Hal’s story:
I was in high school. I was in a production of Jesus Christ Superstar. The director asked me if I wanted to go to Manhattan. I went to Charlie’s on 45th and Eight after seeing a show. The host—there were two hosts and a bunch of waiters. The first host gave me his phone number. The second host gave me his phone number. My waiter gave me his phone number. I asked the guy who—the director who obviously wanted to sleep with me—if he wouldn’t mind if I did some exploring. So I went to the first host’s house, from there to the second host’s house, from there to the waiter’s house. I ended up at the Spike and then the Mine Shaft. And then I would go to the Mine Shaft every weekend from then on until it closed pretty much. Got a job as a busboy at Studio 54. Was the most popular kid in my high school. Was screwing Mike [his husband] at the same time I was screwing girls.
We reconnected every year for 30 years, two and three times a year, and we would talk about having a relationship and he’d say, “I’m not ready.” And I’d say, “Okay.” And then I’d say, “I’m ready.” And he’d say, “No.” Or then he’d say he’s ready and I’d say, “No.” That went on for 30 years. And then 5 years ago we moved in together finally. We were always with—we were with other people. And we would get together and fuck and our attitude was, “You were my first and I’ll never give you up no matter what.”
Ryan and Christopher
Ryan and Christopher are the two youngest men I interviewed. Unlike the other men, they both seroconverted just outside the window of the 1980s, in 1991, and the seroconversion came at a time when they both were embarking on new relationships. Both Ryan and Christopher are still with their partners. Interestingly, both also struggle with the source and stories of their seroconversion, which occurred despite each man’s belief that he was protecting his health and engaging in safe sex practices. At the time of our discussion, Ryan was 40 years old and Christopher was 45. There is much that bonds these two men, and interestingly I conducted these two interviews back to back.
I had met Ryan some 16 years prior to our interview when we both worked at GMHC and developed a friendship. In 1997, he, with his partner, and I, with my boyfriend at the time, attended the Fleetwood Mac reunion tour The Dance. Ryan’s relation to me during our interview was indicative of how he views his place in the world, which is often in relation to other people, namely, his family. When I asked Ryan to describe himself, he said, “Let’s see. I think Ryan primarily is an activist. Um, starting early on, like in my late teen years. Um, Ryan is very much a son, very much a mama’s boy. Um, he’s a husband. Um, he’s an uncle and a brother. Um, yeah.”
Ryan’s involvement in activism was defined by both his identity as a gay man and the AIDS crisis, although here these activities are understood (p.38) in relation to people in his life. Although HIV-negative at the time (1989), Ryan was introduced to and became part of the ACT UP movement through a friend he met at college, who was older than Ryan and whom he was dating at the time. Recalling those days, Ryan describes with great excitement his introduction to Bob Rafsky, one of the leaders of ACT UP in New York City who is featured in David France’s documentary How to Survive a Plague:
To this day, Ryan is unsure of how he acquired HIV. He recalls the HIV antibody test he undertook shortly after starting to date his now husband as a routine diagnostic during an office visit, not directed by any act that may have put him at risk for HIV infection:
Um, and he also had a different group of friends that went certainly beyond our college campus. Um, like one night he and I and Bob Rafsky had dinner, um, which like totally blew my mind. Just sitting there, you know, having dinner with him. I didn’t realize it at the time. Like, what, how influential he was.
Being HIV-positive is not the result that Ryan expected. In attempting to identify the source of his infection, Ryan expresses the greatest confusion because of his knowledge regarding HIV at the time and his safe sex practices. For Ryan, this event in his life occurred despite the fact that he postponed sexual intercourse until college and was very knowledgeable with regard to the disease and how it was impacting the lives of gay men:
Um, and, um, I was at my allergist, actually. And I said, “You know what? It’s almost 6 months. I should probably have one.” I don’t know why it occurred to me to say—I think because she was drawing blood anyway. I said, “Could you also do an HIV test?” And she said, “Sure. We can do that.” And I said, “Okay.”
Christopher reminds me of Ryan in many ways, including his physical appearance, that both men are of northern European extraction with fair skin and deep-set powerful eyes, and that both grew up in the New York metropolitan area. Like Ryan, Christopher also seroconverted unexpectedly and (p.39) during the onset of his relationship with his partner to this day. But unlike Ryan, who was very stoic in his approach to the interview, Christopher engaged in our conversation with a great sense of humor yet still with great introspection. When asked to describe himself, Christopher defined himself as follows:
Um, it could only have been one of two guys. Um, I used condoms with both of them. Um, I couldn’t tell you which one it was because I was seeing both of them at the same, you know, at the same time.
It is kind of like a beauty pageant question in that I think for one thing it’s always changing. Um, and I—and I—sometimes I think I show the outside world, you know, some people in the outside world something different than, um, I um—that’s who I am I think sometimes. Um, it’s a difficult question to answer because I’m—I’m kind of always trying to figure out that myself. And, you know the things you wanted at 21 or 22 seem to change—you know, as you get older and, um, I think that, you know, just like with HIV, um, you don’t plan that.
Unlike Ryan but similar to many of the other men, Christopher’s story of sexual development starts an earlier age while he was still a minor and again with a man who was older, in this case a next-door neighbor, and was focused on foreplay and oral sex. In retrospect, Christopher, 45 at the time of the interview, understands these experiences as abusive and admits that he was even aware of it at the time:
Christopher was raised in New Jersey in a suburban/rural region. His first experience involving anal intercourse was with his high school friend, Raymond, an African American man, who had passed away a year prior to our interview. Christopher recalls this relationship with great affection but also as one of great strain as he grappled with his sexual orientation: “And then I think we were both at odds with ourselves, with each other. I think our relationship for us was a little like living in a mirror. Neither one of us wanted to face the fact that we were gay.” More pointedly, it becomes clear that Christopher was very much in love with this man, and it is in this section of our conversation that Christopher is most engaged. It is also clear that this is a relationship that still holds great meaning for Christopher, as he shares how issues of race and class, in addition to grappling with being (p.40) gay, may have eventually torn them apart. This included Christopher’s father’s very overt racism. Christopher vividly and with passion recalls his relationship with his lover/friend after high school:
And I think once or twice we had like sexual experiences, like oral sex or whatever, after that, and I probably, you know, wasn’t more than 15, 16. I think I knew in my mind it was inappropriate, but I didn’t—I don’t think—I think in my—yeah, in my mind I knew it was inappropriate, but I didn’t—I didn’t really care.
Following this experience, Christopher recalls a series of three relationships that he describes as inappropriate and that in some ways perpetuate the patterns with his first boyfriend because each of the men also struggled with his own sexual orientation.
So we kind of went our separate ways after high school. I mean, he was a year behind me so he was there. And he had written me a letter in college and he—he was involved in, not heavy drugs, but he was—a lot of marijuana smoking—while I was still in high school and that sort of just put a rift between us, you know, a further rift between us. And he had written me a letter, I think it was my first semester at college. And I remember reading the letter, going to class and it was snowing out. Like—like—like—and I don’t have the letter because I—I was still angry at him. And it was—basically the gist of it was I would rather be someone that smokes pot once or twice a week than be a homosexual like you. He said that to me. And there was a subsequent apology probably a month later in another follow-up letter. And then it was like something out of, you know, Penthouse forum. It was like, you know, like—and it—there was just so much back and forth with him because he never knew where he was or what he was doing….So I sort of just—I didn’t completely close off contact with him, but I didn’t make an effort to see him or spend time with him. Like he was a very talented individual, you know, in the arts. Very good vocally and the whole thing. And he wasn’t able to afford college. So he wound up, I think, moving to New York and then subsequently Detroit. But there was a moment in there when I had just finished college and I think he was spending his summer up in Provincetown. And I was living with a college friend that summer, so that was 1988. And we—I knew he was out on the Cape, so I don’t know how I figured it out, but that was—it was like, you know, an hour and a half for me to go out and see him. And I had a couple days off so he’s like, “Come out; we’ll spend some time.” And the initial 24 hours—well, I had—I saw him for about 2 and a half, 3 days. The initial 24-hour period was like this great, you know, reunion and we saw each other and there was sex involved and all this other stuff. And he lived with a lot of—I don’t know how I describe them. I would guess—I would say like liberal, you know, very left-leaning social views and—very progressive and, you know, minority rights and that stuff. And that—these—not all these people were Black or what have you. Um, but there was a point there they all started picking on me because I had like this degree from a very mainstream school in, you know, broadcasting or broadcast management and what was I gonna do for the world? And, you know, I was contributing nothing. And I’m like, “Well, what are you doing?” And like he said, “Well, you know, I sing my protest (p.41) songs and—.” It was like—basically, it was like—you know, and I left there angry and I probably didn’t speak to him for the better part of 10 years.
The striking resemblance to Ryan surfaces in Christopher’s recollection of how he found out he was HIV-positive. In this case, Christopher was consistently testing for HIV and was likely detected at the very onset of his infection. He recalls a bout with the measles and an HIV-negative test result at that time, followed by a positive result 6 months later, which he recalls as 1990: “It was—I think I remember watching on the TV that we had invaded the Gulf at that point.”
Vibrant, intelligent, and effervescent are words that describe Eddie, a 49-year-old African American man. Eddie’s journey took him from Detroit, where he was raised as part of a Black middle-class family in a predominantly White neighborhood; to Atlanta, where he briefly studied fashion at Morehouse College; to Newark and New York City, where as a young adult, Eddie found himself unstably housed and homeless. Eddie’s mother was nurse and his father worked for Chrysler, and the formative years of Eddie and his brothers situated them for a life of success: “So all our neighbors were White and we were the rich kind of Black, privileged Catholic school kids that are going to go to college and be the fabulous, fabulous people that we know we are.” Despite these indicators of success, much of Eddie’s life has been defined by great challenges and adversity over and above being HIV-positive. Still, Eddie, at age 49, understands these experiences as key to his identity. When asked to describe himself, he replied as follows: “Um, Eddie, um, Eddie is, um, Eddie stands for something and I represent something. And I like to call it my will, what is wisdom, integrity, and love.” And when asked directly about his life’s adversities, Eddie indicated,
Eddie’s voice is one of fortitude and savvy as he had to navigate environments and situations to survive, from a very young age. Despite his parents’ wishes and hopes for him to become a medical doctor, Eddie went to college to study fashion; moreover, despite the fact that Eddie was raised in the stringent reality of Catholicism and “an extremely disciplined family,” he managed to explore his sexuality even at a very young age. Like many of the other men, Eddie knew he was gay as a child, and in his case, he acted upon these thoughts and desires:
I thought it was a challenge. I look back now and I think that everything was meant to sort of be the way it was meant to be because that’s what made me who I am. I always thought I—when I look at homeless people always, always—I was—at the time, I thought it was the worst scenario I could ever (p.42) be in. But when I reflect back now, I don’t look at it as being sort of a negative sort of down time. I sort of celebrate my homelessness.
And despite the fact that he was not an alcoholic, Eddie managed to find shelter with the Salvation Army in Newark when he was homeless and in need: “And, um, I love the Salvation Army. It’s one of the greatest experiences in my life. I—they took me in. Um, I was not an alcoholic so I pretended to be an alcoholic to get in.”
I knew something was strange from the age—my first—in first grade. I was 6. It was this little boy who was very curious sexually. And I remember it like it was, I swear to God, yesterday—that he wanted to go into the bathroom with me and we wanted to touch each other. I did. I remember thinking about it at night. I went home and I was thinking about it when I laid in bed. This is what I’m going to do, I’m gonna go in there with him and I’m gonna keep my eyes closed and I’m gonna—you know what I mean? And then I was gonna touch him and then that’s it. The next day came, and I went to a private Catholic school. So they had—and the stalls were these real big stalls with—with marble. They were really high and tall. And we were so little that we went into the stall and he leaned on one side of the toilet, I leaned on the other and we were so little that we—that the stall would hide us. And I remember we pulled down our pants and we both touched each other. And someone came in, but we didn’t have to do anything because we were little enough so they didn’t even see us in the locked stall.
For Eddie, adolescence was filled with sexual adventurism in motels and in the bathrooms of JC Penney, yet, like Gianni, who also was raised in a disciplined, aspirational ethnic family, Eddie hid his sexuality in fear of repercussions and to adhere to societal norms:
The voice that reemerged many times during the conversation with Eddie was that of the mentor. Eddie qualifies his role as a mentor by stating that like many young Black gay men, he too struggled with both sexuality and HIV, denying both for many years:
I think because, um, everybody else did it, uh, my brothers did it, I didn’t understand why I had these feelings, I suppressed them, I wanted to sort of, (p.43) um, be like everybody else. I did not like the fact that I did that, even though I did. Um, and I used to take my girlfriend out and then after I finished taking her out, come up with some excuse not to really—we only would kiss….I was in high school so I was very responsible, at least my parents thought so. So they would let me have the car and everything because they thought I was dating this wonderful girl who was gonna be my wife.
Eddie indicates that the condition is not much improved to this day:
And so I really kept to myself. I had a few, primarily Black, uh, uh, you know, gay friends and we sort of all sort of hung around each other. And um, it was, um, it, in a sense it hit sort of, especially the Black gay community, um, was in super denial about how to deal with this epidemic.
Eddie is the embodiment of exuberance. Throughout our conversation, Eddie, who looks youthful and is vibrant and energetic, expressed his thrill at being involved in the book project and grateful to be able to share his story: “And I’m so excited about being in the book; this is like the greatest thing in the world to me. So, and um, life has never ever been better, ever.” At the time of the interview, Eddie was in a loving relationship with another HIV-positive man 20 years his junior, which had ended a year later.
And, and, to be honest with you, they still are. That’s the really sad part. That really bothers me, is that there’s no sort of excuse. I mean certain communities have done well in general with this disease. And it still is horrendous. And you know young Black gay men, it’s horrendous. They still are getting infected and it’s crazy. And that bothers me more so than anything else. So, um, and I spend a lot of my time trying to be an example to younger especially Black gay men who just say, “Oh, well, you know! Doesn’t matter. I can take a pill; I’ll be fine.”
For some of the men, like Eddie and Gianni, the period after leaving home in the early 1980s for college and other destinations was defined (p.44) by unabashed and unbound sexual exploration with men, after years of identity suppression to adhere to societal norms. Unfortunately, this was at a time when HIV was circulating wildly in the population, and higher levels of untreated infection led to hundreds of thousands of infections among gay men. For so many gay men, who were promised the sexual liberation of the 1970s, infection with HIV was a situation over which they had no control. This reality was also true for Jackson, a 57-year-old articulate, handsome, well-groomed, and somewhat reserved man, who is the embodiment of Southern charm, and who describes his experience as follows:
Born in a family with Southern Baptist roots and strong connections to the church, Jackson was one of five children (in fact, a twin): “So it was a very kind of a conservative upbringing in the liberal pocket outside of Washington, DC.” Jackson describes his childhood and adolescence as “coddled,” and exposure to drugs and alcohol only occurred during his college years. And like all of the men, Jackson struggled with his sexuality, and this was a source of stress in his life: “I was—I—I—yes. I considered it a happy childhood. I—it was a loving nest. I was terribly closeted. I knew from an early age that—I had the feeling that I had failed my father.”
Um, I—I describe myself as a New Yorker. I’ve lived here since ’77, 1977. Uh, I was—I came up here to be a performer, singer, dancer, actor. I grew up in the suburbs of Washington, DC. Uh, and I have a protective realm and got—came to New York as soon as I could, went to college, University of Maryland. And uh, almost immediately—you know, there were 2 or 3 years before the AIDS crisis hit of, you know, the exuberant abandon, and then it all really came crashing down really fast. I was an activist. I threw myself into ACT UP, Broadway Cares. A lot of volunteering.
This sense of failure or not living up to expectations permeated much of my conversation with Jackson and seems to have emanated from the perception of how his father viewed him: “I didn’t feel uncomfortable. But in the back of my mind, I—I—I—in some dark, mysterious way, I thought I had failed my father. And my father had a temper.” However, as an adult, Jackson experienced great support from his parents as a gay man and his perceptions as a child may have been unfounded and informed more by societal norms:
As he merged into adulthood as a gay man, first as a bisexual gay man in the mid- to late 1970s (“I loved everybody”) and later as a gay man, Jackson struggled with his sexuality, perhaps informed by the religious roots and social contexts of his childhood. In fact, even in this period of sexual liberation, Jackson did not engage in countless anonymous encounters. Instead, he was involved in a series of relationships, the first of which was with his partner Johnny, who eventually died of AIDS:
And then when I came out, my father wrote me a beautiful, supportive, three-page letter full of love and support and would argue far into the night with (p.45) my mother saying the gay people…his experience with gay people were hard working, tax paying, respectful to woman, all these values and ideals that he held. And I thought follow more closely in the path of, I wouldn’t use the word Christ consciousness, but in the path of Christ; he thought gay people should be exalted by Christians.
Jackson’s second major life relationship was with another man who also died of AIDS. In fact, Jackson’s entire adult life, like that of many of the men, is defined by AIDS: “So now we’re—um, yeah. You know, primary relationship. Um, but yeah, as Randy died, Johnny got sick, and one by one, my sexual history, my past, my romantic history was dying off.” This reality also is illuminated when he describes first reading about AIDS in The New York Times, around 1982, and the loss of his social circle in the years that would follow:
Well, my first serious relationship, like first lover, was a very intense kind of…actor, singer, director, choreographer who was whip smart, kind of acted up a little probably. And he yanked me kicking and screaming out of the closet. You know, once he realized who I was, he, for instance, would take me to New York, steer me to Christopher Street, grab my hand while we were walking down and not let go, sending me into a blind panic, which by the end of the block was getting kind of like—he said you have to be defiant at first. So I developed, except for my family, a steely sense of sort of being an activist gay.
And like Gianni, Jackson speaks with a sense of peace about his life currently, married to his husband for 6 years, who referred him to the book project, and living in both Atlanta and New York: “In fact, I’m living—6 months ago, my husband and I moved to Atlanta to be with them. And my husband, works for the CDC, so he was transferred there. So I have an apartment—we have an apartment in New York. We have the best of all possible worlds.” Like many New Yorkers, Jackson adds, “…and we’re plotting our escape; our return to New York.”
Well, it’s interesting because I remember it so clearly reading the article in The New York Times. And it happened right over there. One of those penthouses there in an apartment. My friend Dennis had a job cleaning a duplex apartment for a film director who lived in that building. So when the director was out of town, our gang would come up, and we’d smoke pot. It was a perfect arrangement. And hang out. And my friend Martin came in later with the article from The New York Times…and, uh, we discussed it. Martin was (p.46) much more political. Um, he had friends in San Francisco, and he’s saying they’re talking about this. And then it led to a whole mess into the buzz kill needless to say. And there was a discussion about poppers, and Martin was throwing his poppers away, and Dennis couldn’t have an orgasm with poppers. You know, and Martin was our first close friend who died of AIDS, eventually, Dennis also.
Tyronne, a 55-year-old Black man who also has southern roots, came to New York in 1979 as a young man, where a world of possibilities was opened up to him: “Well, I came from Alabama, and I came to New York when I was only 22 years old. I was like an innocent person, living down there all my life, but once I got to New York, and I saw like this whole different world open up to me, all of that went out the window. It was like a whole lot of pent-up stuff inside me just came out.” The emotional and sexual release that Tyronne experienced coming to New York City was fueled by a childhood of responsibility and indigence. As a young child, he was removed from school to care for his siblings because of the poverty in which his family was living and because of the large number of children in his single-parent family:
(p.47) Significantly, Tyronne, raised as part of a large and somewhat indigent Black family, understands his acting-out behavior and subsequent behavioral struggles along the lines of these childhood responsibilities:
I came from a very big family. We were very poor, and I mean we always had enough of everything, and my father left my mother with like 10 kids, and I had to spend like 2 years out of school to help take care of some of my smaller siblings, and it kind of made me like an impatient person I think from doing that because I think I so wanted to go to school, and I felt like when my mother took me out of school that it started me to grow in some kind of way, but I mean I just felt stifled, and it kind of made me, because I always held that against her that like she just had something against me, so it kind of made me a mean and impatient person.
Compounding these circumstances were Tyronne’s same-sex desires and the perceived homophobia evident in his environment:
I mean one part of it kind of liked it, just taking care of kids. I don’t know where that came from. I liked it, but another part was I just felt like it wasn’t my responsibility. I mean they were my brothers and sisters, I mean I knew I had to look after them, but I didn’t think that I had to take care of them. I just thought it wasn’t right for what she did, and I just held it against her for a long time. So then I started growing up, and I started with bailing against her. Everything I wasn’t supposed to do, I did. I acted out in school, and then that’s when I first started going through the whole thing about being gay. I think I kind of knew it at like 6 or 7, but it was during that time with this thing with my mother where I just said forget it, I don’t care. I was tired of hiding it. I started running around with a group of straight guys, you know acting out, to try to prove something. I was in five or six juvenile homes. My mother was like, “You’re gonna kill me—my blood pressure.” My brothers, my two older brothers before me had been in the same juvenile home, and then I think it was like around 1978, my mother said, “You know, you need to do something.”
And thus it was under these circumstances that Tyronne navigated his way to New York City. In New York, Tyronne reinvented his persona, built his body up at the gym, and worked at the Saint, a very popular and decadent (p.48) club for gay men in the East Village, which gave rise to the circuit party scene that permeates the gay community to this day. (The Saint closed shortly after the attack of the AIDS epidemic, although it continues to hold events as the Saint-at-Large.) Tyronne embarked upon a series of relationships with three men, mostly White men of Northern European extraction, who became his boyfriends, the first of whom was Jeremy, an English man 20 years his senior who eventually died of AIDS complications, a thought that made Tyronne very emotional. This period of Tyronne’s life and the next 20 years were characterized by the continual use of illicit drugs, mostly cocaine, and ongoing short-lived relationships, conditions that existed in his life up until 2007. This time was also characterized by deteriorating health, in part because Tyronne would not adhere to his antiviral treatments because he was selling them to make additional cash to feed his substance use, a practice that was common in his social circle: “That was when people first started selling those things, so I figured well, you know I’m not sick or anything, so I’m not gonna use mine, I might as well sell them like everybody else.”
I would go fishing. I used to like going fishing with my brothers and his friends, and I have a cousin, he’s my first cousin, they used to always play around and call me sissy boy, oh you’re not gonna do that, you shouldn’t be like this, you need to be a man, blah, blah, blah, come on let me take you fishing. He took me fishing, and he was like, he took his dick out, and of course I was frightened. I so wanted to do it, but still I was frightened. I had heard things about people getting fucked, how it hurts, this, that, and the other because there were like two other guys in the whole town that were gay. Sometimes I would sit on the porch and talk with my mother, and I would overhear them say things. They were like right across the street from me.
Tyronne also describes this 20-year period of his life as one of caretaking: “I never had anything, so I figured that I could make up for that by trying to fix somebody else….” He attributes his need to care for others to raising his siblings at a very young age, the condition that also prevented him from self-care. However, in 2007, with the onset of middle age, Tyronne shifted the course of his life:
During the course of our discussion, Tyronne spoke with great enthusiasm about his annual family reunion in Alabama. He has made peace with his family, who has accepted him as a gay man, and in the upcoming weeks Tyronne would be attending this event with his boyfriend, who he has been in a relationship with for 3 years and who is in his early 40s and in need of “fixing,” a characteristic that attracts Tyronne to this man in his life. (p.49)
The fact that I was getting older, and I couldn’t keep up anymore, you know, I just couldn’t do that physically, and mentally up here. You know everything that I wasn’t doing right for my health and myself, it was—I would have to deal with a lot of guilt later. From doing the things I wasn’t supposed to do, and then I started to care a little bit more about other people than myself because you know I was kind of selfish you know, I think that had something to do with when my mother took me out of school, I didn’t have enough for myself, and I think I tried to get that back later in life.
Fifty-one-year-old Patrick, a trained, professional dancer and now a personal trainer, came to New York City from Reno, Nevada. Within the first minute of our conversation, Patrick and I bonded over our admiration for the singer-songwriter Kate Bush (Patrick commented on the albums displayed in my office) and over a mutual acquaintance, whom I had not seen for over a decade. In fact, Patrick indicated that we had met prior to this interview, although I could not recall this meeting. Although these circumstances may have served to facilitate our conversation, in fact, it created a sense of tension that eventually dissipated. Patrick was hesitant at first, either because of our social connections or because of his temperament, but he soon became very clear, articulate, and expressive in his conversation.
Throughout the conversation, Patrick clearly articulated that he did not view himself as a victim, despite a life of AIDS. What comes across is a voice of control and strength, although sprinkled with sadness:
Patrick describes his formative years as a time of hard work, fun defined by his sexual life and alcohol, and an attraction to older men (his first lover was 7 years older than Patrick), a time during which he moved between Texas, his primary residence, and Oklahoma, Nevada, and New Mexico for his schooling as a dancer and his work as a performer. Patrick believes that his naivety about men and about relationships during this period is the source of his seroconversion. Patrick traces this naivety to the manner in which he was raised, and his story parallels the experiences shared by Gianni with loving yet permissive parents:
I’ve never felt victimized, ever. I’ve never felt victimized. I’ve never felt like I was going to die. I never felt like I was given a death sentence even though I was told that and I saw it in writing.
Like so many of the men, Patrick’s first memories of attraction to men, and again older men, are from a very young age, in this case age 4 or 5: “At the same time, I was fascinated by my next-door neighbor’s father.” Yet like many of the other men who came of age in the 1970s and 1980s, Patrick suppressed these sexual feelings and desires, even limiting his experiences (p.50) during adolescence to two men with whom sex was foreplay and attempting to live life as a heterosexual man until age 19:
Extremely, very smart parents. Not great at raising a family, children that—they were better at making us dismissive and being a family….They raised us to be very independent.
Throughout the course of his adult life, Patrick faced many of the challenges of living with HIV—the opportunistic infections, including Pneumocystis pneumonia and the toxicity of overprescribed AZT, yet the need to earn a living and maintain some semblance of normality. These days, Patrick fully embraces his serostatus, and in fact shares his story of living with HIV/AIDS with his clients, which serves as a source of inspiration to them and a source of liberation for himself:
And then I tried to have a girlfriend in college. A guy across the hall fixed me up with a girl. There was a girl in the theater department that I was very attracted to, we got along well, and it—I’m sure she knew. Anyway, we attempted to have sex and it was terrible. The cigarette was the best part. And I just knew. And right after that was Christmas vacation. I went home and saw my friends from high school. We went out to a gay bar and that was it.
I think instinctively now, it wasn’t until 2 years ago that I came out to my clients about my HIV status and all the stuff that I’d been through with it. And I started telling one client after another. These are clients that I’ve had for a long time. Because I, after I told one client who was dealing with breast cancer, that, “You know, I need to tell you something.” She’s afraid of the doctors, afraid of radiation, afraid of death. I said, “It’s okay to be afraid, but you have to—you have to—don’t let—you’re afraid of the doctor, don’t be afraid of the doctor because you have as much right to say ‘No’ or ‘Yes’ to anything.” And she listened to my little tale about this, you know. And altering. I could see it visually immediately. I helped her. “Wow, really? You’ve been through that?” “Yeah.” “And this is your attitude?” “Yeah, this is my attitude.” “And it worked for you?” “Yeah, it worked for me.”
Andre’s story is a military story, a life of service to the United States while living with HIV, as well as all the emotional complications associated with these conditions. The story of Andre, who was about to turn 46 at the time of the interview, is a New York City story, a native New Yorker story, which is more rare than one would imagine: “Born in Harlem Hospital. Uh, raised, uh—I have two older sisters. Single-parent household—my (p.51) mother. Father—well, there was one at one point, but I never lived with him. I really didn’t know him.”
Andre, a handsome and well-built African American man, was confident, articulate, and extremely intelligent in his presentation and had a smile that lit up my office. Of all the men with whom I spoke, he was the one who most successfully conveyed his thoughts and ideas, because he was very conscious of the structure of his narrative. His story is one of the gifted child, which under the correct circumstances leads to major life accomplishments and in other circumstances, if unharnessed, may lead to the “drama of the gifted child” as described in the profound work by Alice Miller (1997). In this case, it is the story of drama as Andre conveys his acceptance to one of the most prestigious schools in New York City for the intellectually gifted—Hunter College High School—as a situation that was fraught with many issues for him in 1978:
The situation was intolerable for Andre, who decided to attend his neighborhood junior high school, and then a public high school, the New York High School of Printing. But for someone of Andre’s intelligence (the intellectually gifted child), these environments were not intellectually challenging, and much of his time was spent cutting high school and frequenting the Adonis Theater, a commercial sex environment in the Midtown section of New York City, which was adjacent to Andre’s high school. What education Andre did receive in those years was in the form of anonymous sexual encounters at the movie theater: “I would go with my knapsack and check in. And go in there and stay for hours. And I was having sex—oral sex, anal sex, whatever….No condoms, because there was like—who—you know, whatever. What—what’s the condoms, then. Right?” Andre’s sexual adventurism was not confined to the Adonis and extended into the Rambles of Central Park, the Jewel Theater in the East Village, and the Christopher Street Theaters, environments familiar and iconic to all gay men who came of age during this historical period. (The Rudolph Giuliani mayoral administration in the early 1990s worked diligently to “clean” the city of these sex environments.) In the end, and after a series of trials and tribulations indicative of the drama of the gifted child, (p.52) including running away from home, Andre easily earned his GED. Andre’s first understanding of AIDS as a young man was in these terms:
I get into this school. I’m one of two students who went to the school—we actually made the summer program. One guy was cut from the summer program. I got in and it was really—talk about culture shock. It was, “I don’t fit. I don’t belong. I can’t do this. I can’t do this.” I didn’t have the support. I was the little Black kid for one from down the hill.
Andre’s HIV status became a reality during a routine health examination while in the Air Force.
It’s GRID thing in San Francisco they were talking about. They were beginning to talk about it in New York. And it was the Haitians and it was the gay White man and it was the Haitians and what—“Okay, I’m not either one of those. I’m okay.”
My final conversation was with Kerry, a 49-year-old extremely handsome White man with beautiful blue eyes, who likely garnered much attention in his youth because of his appearance and still likely attracts similar attention, despite evidence of some facial wasting due to lipodystrophy. This conversation was joyful as Kerry shared his story after first expressing some uncertainty about the purpose of the interview: “I don’t even know what I’m doing, but I’m happy to talk about it.” Throughout our conversation, Kerry’s smile illuminated the room. I felt very emotionally connected to Kerry immediately because of his sincerity and kindness. This interpersonal prowess also emanated during the focus group when he described himself as follows: “I’m Kerry and I was referred by a friend. And I’m positive since 1992, March of ’92 and like everybody else, I’m just thrilled to still be here, I guess.”
More often than not, Kerry’s voice was one of concern about the realities of HIV, his treatments, his surprise at still being alive, and the effects of the disease on his neurocognitive abilities, of which he spoke quite articulately. His self-definitions were often in relation to HIV. When asked to describe himself, Kerry first said:
(p.53) Kerry was the only man who also spoke of the other health conditions that emerged alongside his HIV from years of inflammation (Appay & Sauce, 2007) and also an aging body.
It’s difficult, um, and I struggle with it. Um, and I think I’ve come to terms with the fact that I have to be happy that I’m just here. I still take 26 pills a day. And I—I don’t have the energy. And I have—my—my memory’s affected by—and, um, it’s—it’s disheartening in later life in a different way because your family understands—your family and friends understand the immediacy of it in the ’80s and the ’90s when you’re going through med changes and things. But as soon as things kind of level off, they don’t realize the repercussions all that has for much later on.
At the time of the interview, Kerry was in a relationship with a man 13 years his junior, who was also HIV-negative, an aspect of his life that Kerry shared with a smile and a sweetness in his voice. When asked about the challenges of being an HIV-serodiscordant couple, Kerry understated the challenge, indicating his limited need for sex (a lifelong condition) as well as the knowledge and confidence he and his partner have with regard to safer sex practices. What becomes apparent is that the relationship is one of mutual support and respect, understanding, and companionship, which was undoubtedly modeled for Kerry by his parents. Growing up on Long Island, New York, Kerry described a loving and supportive family even when he came out of the closet. Of his mother he said,
And of his father he said,
She was my buddy. It’s a typical gay son, mother relationship. We went to shows together and went to gay bars together and had a great time. Although ironically enough I think she was the one that had a harder time with my homosexuality than my dad. And that was because she wanted grandchildren.
But even in this loving family, the reality of larger social circles and society influenced Kerry’s development, as it did for so many of us coming of age in this historical period, right after the Stonewall Riots—words that haunt many of us to this day, as Kerry describes:
And my dad—my dad sat home and cried one day when he found out that I was gay because he was always the last one to find everything out in the family. But then he was really genuinely more upset that he’s always the last one to find out in the family than that I was gay. And my dad invited my lover the first time for Thanksgiving.
(p.54) Kerry’s life journey, however, was also one of struggles—loss of a lover of 8 years to AIDS; a point in his life when his immune system was so suppressed that he had four T cells; a career in the modeling industry that became unraveled because of HIV and the expectation of death, which never came; the challenges of fading memory and the physical complications of entering middle age after an adult life living with HIV; and limited income living in New York City. He expresses a yearning for a time past when he perceived a greater sense of community: “I think the gay community came together in a way in the ’80s like it never had before.” I expressed a similar sentiment in the foreword for Michael Shernoff’s book Without Condoms (2005). Michael was a friend and dear colleague and a brilliant psychotherapist who was a pioneer in the development of safe sex practices, a long-term survivor who died of AIDS in 2008 at age 57.
I didn’t have a gay role model. I remember in, um, I was born in ’62, and I have a—there was something that happened—oh, when Harvey Milk was shot. I remember someone in my family saying something derogatory about faggots, and that—I don’t remember who it was or where we were or anything like that. And, um, years later I remembered that, but it kind of stuck with me.
Throughout our interview and in many interactions since that time, Kerry has been articulate, warm, and funny. His kindness radiates through his eyes and his smile. Kerry cites the Broadway actress Megan Hilty, the television show Smash, and his dog as his passions. He says, “We make these things to keep us going.”
It is the end of July, and the 11:30 a.m. ferry to the Pines on Fire Island, New York, a gay hideaway on the southern shore of Long Island, is more crowded than usual. On this weekend, owners, renters, and visitors flock to the island for the annual ritual known at the Pines Party. This circuit party consists of numerous events lasting throughout the weekend, culminating in the dance party Saturday night into Sunday morning. It is the successor to the Morning Party, an annual fundraiser held by GMHC starting at the onset of the epidemic and continuing into the late 1990s, until the rampant drug use and overdoses and unsafe sex among revelers transformed what was once a somber event to honor those living with and lost to AIDS and to raise funds for a worthwhile organization into a Bacchanalian feast that created a public relations nightmare for the agency. I witnessed this sad situation for GMHC as I was serving as their director of evaluation research at the time. The Morning Party was part of a 20-year tradition of philanthropy and community celebrating on our beach that helped us navigate through the dark hours of AIDS and raise funds for those in need. Since 1999, the Pines Party has raised funds for the Stonewall Community Foundation, which distributes the funds among organizations serving (p.55) the LGBT community as well as the Fire Island Pines Property Owners Association Charitable Foundation, which enhances the ecosystem and common areas of the Pines. Illicit drug use and unsafe sex still prevail at this event.
On this particular Friday, men of all shapes and sizes merge into a narrow entranceway to board the ferry. Among the 200 or so men ranging in age from their 20s to their 60s are some who are living with HIV, and some who have likely been living with the disease for an extended period of time, like the 15 men you have met. To the normal observer, the fact that some are living with HIV may not seem obvious, but 20 years of conducting this research has sadly empowered me to recognize lipodystrophy (Carr, 2003) (a side effect of HIV antiviral treatment that leads to the redistribution of body fat made most evident by distended bellies and facial wasting resembling Bette Davis in her advanced age). One should never judge or conclude simply from appearances, but in this particular situation, the sign is obvious and clear.
Yet like the 15 men you were introduced to, these men, also in their middle age, went about their business, looking forward to all the weekend had to offer, despite what has been undoubtedly a trying and demanding adult life for them. And like all men of the AIDS Generation, they are alive and a vibrant testament not only to the advances we have made in the fight against HIV but also to the resilience that so many of us have evidenced in the face of a devastating and debilitating disease. I watched these men closely from behind my dark-shaded sunglasses, joyous for their lives but heavy hearted that I could not share each of their stories—but finding solace in my understanding that the life experiences of the 15 men told in the pages that follow no doubt reflect the realities of these men on the ferry—and that like the 15 men in this book, these gay HIV-positive men represent the beauty, strength, and resilience of my generation of gay men, the AIDS Generation.