LAMPE, JAMES N. — AN EXPLORATION OF THE IMPACT OF THE AIDS EPIDEMIC ON GAY MEN IN MIDLIFE

Institute for Clinical Social Work

AN EXPLORATION OF THE IMPACT OF THE AIDS EPIDEMIC ON GAY MEN IN MIDLIFE

A Dissertation Submitted to the Faculty of the Institute for Clinical Social Work in Partial Fulfillment for the Degree of Doctor of Philosophy

By JAMES N. LAMPE

Chicago, Illinois February, 2010

ABSTRACT

This study explored the experience of a cohort of gay men in midlife. All the men were solicited with a request to talk about their current life and discuss their memories of the early AIDS epidemic (1980-1995). A grounded theory design was used to capture the stories of the participants. Twenty-one men volunteered to participate in up to three interviews.

Major findings were discussed from the results. These gay men reported happiness and life satisfaction in midlife. Memories of the AIDS epidemic were readily available to recall. In addition to initial memories forgotten memories of lost friends were recalled following initial interviews. The manner in which memories were recalled imply suppression had been actively used as primary defense. Participants unexpectedly reconnected with feelings of sadness and loss during the interviews or in between interviews implying they had reconnected with disavowed affects.

Participants had experienced fear of annihilation and massive loss of sustaining relationships during the early years of the AIDS epidemic. Despite these aspects of earlier trauma all participants showed evidence of generativity and had calmly accepted mortality. There was also evidence of wisdom, creativity, empathy, and humor, and acceptance of mortality. These traits are evidence of narcissistic transformation.

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For all the men who opened up their hearts and minds and participated in this study, this is for you and all those you have loved and lost. The study stands as a tribute for all gay men who were lost in the AIDS epidemic, especially for Ralph. You are loved, missed and will always be remembered.

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ACKNOWLEDGMENTS

This endeavor would not have been possible without the support and encouragement of my dissertation committee, Bertram J. Cohler, Ph.D., Amy Eldridge, Ph.D., Constance O. Goldberg, M.S., and Dennis L. McCaughan, Ph.D. Thank you for your time, thoughtful comments, encouragement, and support. I am especially grateful to R. Dennis Shelby, Ph.D. the chairman of my committee, my advisor, consultant, teacher and mentor. Thanks Dennis for all your time and thoughtful guidance.

JNL

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TABLE OF CONTENTS

Page ABSTRACT ........................................................................................................................ ii DEDICATION ................................................................................................................... iii ACKNOWLEDGEMENTS………………………………………………………………iv Chapter I.

INTRODUCTION ......................................................................................1 Overview of the Problem Significance for Clinical Social Work Formulation of the Problem

II.

LITERATURE REVIEW ...........................................................................8 The Impact of the AIDS Epidemic for Gay Men The Psychological Impact of AIDS AIDS and Mourning Midlife and Gay Men Theoretical and Perceptual Framework Life-Course Theory Self Psychology Mortality, Adaptation, and Annihilation Theory in Relation to Trauma Theoretical and Operational Definitions of Major Concepts Statement of Assumptions

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TABLE OF CONTENTS--Continued

Chapter

Page

III. METHODOLOGY ..................................................................................34 Study Design Scope of Study, Population and Sampling Data collection Methods and Instruments Procedure for Data Analysis Statement on Protecting the Rights of Human Subjects IV.

INTRODUCTION TO RESULTS .........................................................46 Participants The Six Major Categories or Chapters

V.

MIDLIFE FEELS GOOD .......................................................................51 Life Satisfaction, Happiness, and a Few Setbacks Expectations and Surprises Ingredients for Happiness Detailing the Aspects of Relationships Careers Health, HIV, and Midlife

VI.

WHAT DO YOU REMEMBER? ...........................................................65 I Remember Hearing about It Before It Had a Name HIV Hits the Senses Initial Reactions: It Wasnâ€&#x;t So Bad for Me It Was a Scary Time: The Emotional Impact Is Remembered Feeling Powerless The Impact on Life: Testing; Sexual Choices, Dating, and Relationships.

Chapter Summary

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TABLE OF CONTENTS--Continued

Chapter

Page

VII. RECALLING THE LOSSES .................................................................89 The Range: From “It wasn‟t That Bad” to “Almost Everyone in My Address Book” I Remember the Night He Passed Away They Just Disappeared It Was All Around Me Names: The Magnitude of Lost Friends Maybe You Never Get Over It Battle Stories Memorials and Funerals VIII. I CANT BELIEVE THAT I FORGOT THIS!........................................99 I Was Surprised at What I Felt Additional Memories Come to Mind The Interview: Emotional Reactions IX.

THE YEARS SINCE 1995…………………………………………...106 As It Slowed Down, You Just Didn‟t Think of It Yes Things Were Changing (after 1995), but It Was Never Over I Have Remembered It through the Years There Have Been Problems since 1995

X.

DESCRIBING THE IMPACT ON CURRENT LIFE ..........................113 Psychological Impact on Current Life Volunteering and Political Activism Commentary on the Younger Generation of Gay Men Thoughts on Mortality Thoughts on Spirituality Commentary on the Interviews

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TABLE OF CONTENTS--Continued

Chapter XI.

Page FOLLOW-UP INTERVIEWS ..............................................................132 Introduction Additional Memories It Wasn‟t All Processed It Gave Me Clarity Capturing the Story of AIDS Summary

XII. FINDINGS AND IMPLICATIONS ....................................................139 Introduction Brief Description of Findings Theoretical Implications Summary of Implications Validity and Limitations of the Study Clinical Implications Summary of Clinical Implications Social Implications Future Research Final Thoughts Appendixes A. FLIER I .....................................................................................................185 B. FLIER II ....................................................................................................187 C. INFORMED CONSENT FORM ..............................................................189 REFERENCES……………………………………………………………..194

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CHAPTER I

INTRODUCTION

Overview of the Problem The purpose of this research project was to study a specific cohort of gay men in midlife, thus rectifying the existing deficit of data regarding their adult development.

Specific to this group of gay men is their experience of witnessing the early years of the AIDS epidemic while residing in a large city with a gay community. The study utilized a grounded theory methodology to study the midlife experiences of these gay men and to study how the early AIDS epidemic was remembered, as well as to study its impact in their lives. By virtue of the fact that these men witnessed the beginning of this epidemic, they had witnessed the transformation of AIDS from its perception as a lethal disease to its perception as a manageable infection.

Significance for Clinical Social Work This study will expand the base of knowledge in social work for a cohort of gay men in midlife, all of whom shared witnessing a common life-threatening epidemic. Prior to reaching their midlife years, this epidemic created a psychological life-threatening condition embedded in the social experience of AIDS. There are only a few authors who

2 explore the social influences of being gay in the course of adult development, including midlife years (Cohler & Hoestetler, 2000; Hopke, 1992; Kertzner, 2001; Kooden 2000).

Few studies have been designed with the intent to explore the internal mental experience of midlife gay men and in doing so, develop an understanding of their psychological development. This study adds to social work‟s body of knowledge on midlife experiences, adding greater understanding to the human experience of adult development.

It also explores the manner in which the AIDS epidemic was remembered and examines the meaning of how it was remembered. In doing so, this study provides insight on the use of defenses following emotional trauma shared by a community of gay men.

Formulation of the Problem Defining the problem for this study begins with the premise that the study of the adult lives of homosexual men has often been neglected. Adult life has been studied using heterosexual populations. Galatzer-Levy and Cohler (1993) commented on this fact, stating, “research on gay lives has typically failed to incorporate the insights of lifecourse social science, while the latter has also remained largely uninformed by the former” (p.197). Historically, development has been studied in terms of stages, and the tasks associated with these stages of adult development were first delineated by Erickson (1950/1963,1959/1980,1982/1997). Over the last few decades, the study of man‟s life has turned to the life-course perspective in seeking to understand development as it occurred in historical and social context. Age-related patterns are recognized in this theory but are understood in social and historical contexts. Elder, Johnson, and Crosnoe (2003) note that life course “is grounded in a contextualist perspective” (p. 4). The life-course perspective

3 combines an understanding of the tasks of adult development and adds the perspective of the past historical and cultural events as they influence psychological development.

Gay men of midlife age today are a diverse group. This study accepts the basic tenets of life-course theory and thus assumes that their current psychological experiences have been shaped by their past life events as well as the influence of their social milieu. I argue that the urban-dwelling gay men experienced the critical years of the AIDS epidemic differently than the men who were living in smaller cities or rural areas. In 1986, I moved from Des Moines, Iowa, to Chicago. I witnessed a vast difference in the awareness of the AIDS epidemic in my social group in Chicago versus the group of friends I left in Des Moines. Not only was the topic discussed with concern and fear at dinner parties in Chicago, the weekly publications in the gay community contained multiple articles and stories regarding AIDS. There were frequent obituaries of gay men who lost their lives to this new illness. A weekly gay publication did not exist in Des Moines at the time I moved away. The experience of the AIDS epidemic in urban centers of gay life is further discussed later in this paper with references to the literature. This literature describes the social and psychological experience of the AIDS epidemic. I argue that the urban-AIDS experience created for gay men was one in which they were physically and/or psychologically confronting mortality. This argument is developed later with literature from the earlier years of the AIDS epidemic The choice to study gay men who have lived through the AIDS epidemic developed out of experiences with gay men in clinical practice of psychotherapy in Chicago. In the late 1980s and early 1990s I worked with men afflicted with HIV, either at a point of diagnosis, a point of declining health (confronting the need to give up employment and accept disability), or at the end stage of the illness, providing support

4 when death was imminent. By the late 1990s, I found myself working with HIV-positive survivors (patients who had seroconverted due to exposure to the virus). Some of these men had been diagnosed years earlier and anticipated being dead within years, if not months. They found themselves surviving with renewed health due to the newer protease inhibitors available for treatment. I also worked with another group of gay men coming to treatment for the first time. These men were HIV-negative (men who had never seroconverted) and were either approaching their forties or were in their forties. They had lived in Chicago or similar-sized urban area in the United States during the 1980s and or 1990s. These men had been socially active in the gay community, identifying themselves as gay, and had been sexually active during the critical years of the AIDS epidemic. As I listened to the life stories of these men, I noticed different patterns of coping over the years with recognition that they had lost lovers, friends, and acquaintances. I wondered what overall patterns would be discovered if a study of this cohort was undertaken in exploratory study. In treatment, I wondered how their past experiences influenced their current development of self and how it might have affected their current psychological issues.

For purposes of defining the problem for study, it can be broken down into two issues. The first issue is the need for studies of the multiplicity of life experiences of midlife gay men. The second issue is the need to study the segment of this population that witnessed the AIDS epidemic in a unique way. By definition of life-course theory, this social event created an environmental experience that has woven a historical texture for the psychological developmental experience of midlife gay men. The question explored is whether the AIDS epidemic has affected the current midlife experience, and if so, how.

5 Defining the AIDS epidemic as a social experience with psychological impact requires some background information. This section will briefly discuss the historical events of the 1980s and early 1990s related to the discovery of HIV and the condition known as AIDS. The purpose of doing so is both to introduce the reader to the history of the AIDS epidemic as a social influence and to review that history for those acquainted with this period. A discussion of the psychological impact of the AIDS epidemic is discussed in a later section of this dissertation.

In 1981, the Centers for Disease Control published a report in Morbidity and the Mortality Weekly Report, describing the deaths of five gay men in Los Angeles from an unusual type of pneumonia (CDC, 2006, Jefferson, 2006). The years that followed were years in which the human immunodeficiency virus (HIV) was isolated and the syndrome of illnesses attributed to this viral infection was given the term “acquired immune deficiency syndrome (AIDS)� (Jefferson, 2006; Weitz, 1991). For this study, the early years of the AIDS epidemic are defined as the period of time from when AIDS was first recognized and defined as a syndrome (1980) until the early years of the 1990s. During this early period, AIDS was considered a life-threatening illness. The earliest cases of opportunistic infections associated with AIDS were cases involving gay men. Thus AIDS was considered a gay disease in the earliest years, and for a short time it was referred to as GRID (gay-related immune deficiency) (Weitz, 1991; Conner & Kingman (1989). By late 1981, new cases of infections were identified in heterosexual IV drug users.

Unfortunately, the idea that AIDS was a gay disease stuck for quite a long time, fueled by early media coverage (Conner & Kingman, 1989; Weitz, 1991). Homosexual men living in urban gay communities were either diagnosed with HIV or witnessed friends and acquaintances be diagnosed and die within months of first becoming symptomatic. As a

6 Newsweek article commemorating 25 years of AIDS in the United States noted, this was a time in which people feared frequenting restaurants with gay chefs, cab drivers refused to take persons who were visibly affected by AIDS, and many people either turned their heads or enjoyed bad jokes about AIDS and gay men (Jefferson, 2006).

During the early years, a diagnosis of AIDS was associated with compromising health problems, disabling and life-threatening illness, imminent death, and/or a fight for life that eventually was lost due to the bodyâ€&#x;s inability to fight opportunistic infections.

Some of the victims of AIDS experienced a wasting syndrome, with decreasing body fat and decreasing muscle mass creating a very thin, weak and emaciated-looking patient.

Gay men in their twenties and thirties appeared on the streets resembling feeble, older men. Other gay men witnessed the physical decline and the loss of acquaintances, friends, lovers, and sometimes a gay sibling.

AIDS continued to disable individuals afflicted with HIV and was experienced as an imminent threat to life until the introduction of protease inhibitors in 1995. Protease inhibitors refer to a class of medication that quickly and effectively fought the progression of the virus in the body and created what became known as the Lazarus syndrome (France, 1998). Men, frail from the effects of AIDS and thought to be dying, returned to a level of physical health that allowed a stable quality of life and survival for many more years. Some of these men continue to enjoy good health 15 years later.

Almost overnight, AIDS transitioned from being a life-threatening illness into a manageable infection that no longer left the individual vulnerable to the life-threatening opportunistic infections.

Due to the deficit of studies specific to adult development of gay men, their lives have been evaluated against a broader, heterosexual population with vastly different life-

7 course experiences. The patterns of developing intimacy through dating, marriage, and raising children are facets of midlife specific to heterosexual development. The process of developing intimate relationships through the early adult years is different for gay men who have not had similar opportunities to celebrate dating and marriage.

A brief history of the AIDS epidemic has been presented and its relevance for study discussed. The purpose of this section has been to outline the nature of the problem for study here, providing background for the reader. It is a study of a cohort of gay men in midlife who experienced presence of a life-threatening epidemic within their community. This epidemic was feared as a physical threat to life and resulted in the multiple losses of significant others, friends, and acquaintances that had been social supports. Those lost had provided selfobject experiences, including, but not restricted to, vital alter-ego selfobject experiences.

Without studies of midlife gay men, there is little data against which the experiences of gay midlife can be evaluated. Given that midlife is generally considered the adult stage of life in which one confronts mortality, this study raises the question of what impact, if any, would the confrontation of mortality earlier in life have later in midlife development. Generally, if middle-aged persons confront the end of their lives, they begin a period of introspection and evaluation of their accomplishments. I raise the question, “Will the confrontation of death earlier by a population of gay men change the general psychological issues they experience later in midlife?�

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CHAPTER II

LITERATURE REVIEW

The Impact of the AIDS Epidemic for Gay Men This section will further summarize pertinent literature describing the relationship of the AIDS epidemic (in its early years) and gay men. The early AIDS epidemic for purpose of this study is defined as the period of time between 1981 and 1995. The year of 1981 is defined as the beginning of the epidemic as it is the year of the first published report by the Centers for Disease Control (CDC). The report described five gay men in Los Angeles dying from a mysterious syndrome (Jefferson, 2006). After 1995, with the introduction of protease inhibitors as an effective treatment reducing the presence of HIV in those afflicted, AIDS transitioned from being a crippling and imminently threatening illness to being a manageable syndrome.

By 1992, the CDC coined the term Acquired Immune Deficiency Syndrome (AIDS), recognizing that AIDS was now diagnosed in persons outside the gay community and that the disease was actually a syndrome acquired by an individual, resulting in a compromised immune system (Conner & Kingman, 1989). In 1983, the virus itself was isolated and subsequently referred to as HIV (Conner & Kingman, 1989; Weitz, 1991). Once a specific virus was identified, route of transmission was identified as

9 the exchange of bodily fluids, the most common routes being unprotected sexual intercourse and sharing of needles between infected and uninfected individuals. The virus attacked the body‟s immune system, creating vulnerability to serious health issues for those who contracted it. Though the virus was known to have an incubation period of up to 10 years, contracting the virus was thought to inevitably lead to AIDS, the condition in which the body‟s immune system was severely compromised thus allowing for a number of opportunistic infections to attack the body. Diagnosis was perceived as a death sentence. Though it was traced to Africa where it was known to be found in heterosexual populations, in the United States AIDS carried the stigma of being primarily a disease of gay men and intravenous drug users.

In the first decade of the AIDS epidemic, information about HIV and AIDS was widely published in the gay community‟s newspapers. Weitz (1991) chronicled the failure of mainstream media to publish information about AIDS in its earliest years, citing the idea that AIDS was considered only a disease of gay men, a marginal population often associated with the concept of deviance. Connor and Kingman (1989) discuss the early media coverage of AIDS as an example of ignorance. AIDS could not (and cannot) be spread by casual contact. The media fueled hysterical reactions: Medical scientists became concerned about the early press reports of AIDS, which often described the disease as the “gay plague.” The press coverage seemed to be encouraging irrational fears: people were being led to believe that they could catch AIDS by merely associating with sufferers (Connor & Kingman, 1989, pp.

3-4).

Weitz (1991) further describes the “social construction” of AIDS as a gay disease.

He cited specific examples of media coverage that perpetuated the construction of AIDS as a disease of gay men. This accented the prejudice involved in isolating the gay community as an example of deviance, keeping AIDS associated with deviant behavior.

10 Gay community publications did contain reports of men dying and the attempts to isolate the viral cause. Thus gay men were exposed to a plethora of information as well as to early information gaps. Initially, there were more questions than answers about the symptoms encountered by gay men. This early era set up an ambiance of fear as an illness attacked members of a community, and initially the particulars concerning transmission were unclear.

A diagnostic test was developed in 1984, making it possible to diagnose HIV infection prior to individuals encountering symptoms of opportunistic infections (Jefferson, 2006). The first treatment was made available in 1987. It was a medication commonly known as AZT (zidovudine). AZT was clinically effective in slowing the growth of the virus for a limited period of time. Weitz (1991) describes the differing perspectives about in the effectiveness of AZT in treating HIV. There were many scientists and clinicians who believed that AZT was effective in moving AIDS into the category of being manageable. Those closer to the population affected by AIDS saw the failures of AZT. They recognized that AZT was not a cure, but that it might extend life; however, AZT eliminated neither the disabling illnesses associated with AIDS nor the eventual threat to life.

Gay men in large urban communities remained one of the populations most susceptible to acquiring HIV, due to the availability of sexual contacts within the community. Thus sexually active gay men were at great risk for contracting the virus and more vulnerable to debilitating and life-threatening infections. The possibility of acquiring HIV or of being diagnosed with AIDS due to prior HIV infection was felt by most, if not all, sexually active gay men simply out of identification with their cohort

11 group. Gay men lived in communities witnessing the illness and death of members of their cohorts. Initially, this first decade of the AIDS epidemic was marked by the assumption that diagnosis implied a disabling threat to health. Cohen and Abramowitz (1990) noted: The spectrum of AIDS-related illness ranges from those not exposed (the HIV antibody negative “worried well”) to AIDS-exposed antibody-positive asymptomatics, to those with AIDS-related complex (ARC), to those with fullblown AIDS as defined by the Centers for Disease Control (Acquired Immune Deficiency section, ¶ 3).

The Psychological Impact of AIDS This section summarizes the clinical and psychological impact of the AIDS epidemic on gay men as described in literature from the early years of the epidemic. The purpose of this section is to define the theoretical impact of the AIDS epidemic, recognizing the presence of AIDS as a threat to all gay men who witnessed its impact in urban gay communities. Cadwell (1988) refers to the devastating effect of AIDS for gay men: “Most gay men in some way have been emotionally affected by the illness” (p.

411). Cadwell also put the AIDS epidemic into a social-historical perspective. The epidemic hit the gay community as it was celebrating the era of gay liberation that began in the 1970s. Cadwell (1988) gives a dramatic description of this, stating, “the HIV epidemic has been like an unending scatter shot of terrorist bombs in the midst of the Gay Liberation Parade” (p. 411). This statement itself, with its dramatic tone, represents Cadwell‟s own psychological reaction to AIDS and its perception as life-threatening trauma.

In writing about the psychological impact of AIDS during the years of the epidemic, Blechner (1993) noted, “it is not acceptable to the unconscious. AIDS,

12 somewhat like schizophrenia and the holocaust, is a horrifying, death-in-life situation that we would like not to exist (¶ 10). Blechner (1997) presents a historical account of this time period in writing about the psychological aspects of the AIDS epidemic: At first, the disease was thought to be restricted to gay men, and was dubbed GRID (gay-related immune disorder). Colloquially, some people referred to Kaposi‟s sarcoma as the “gay cancer.” In early 1983, I heard a man at a party bragging cheerfully that he had had the gay cancer, and was cured of it. He was wrong. This man‟s bravado was an example of simple reaction formation, a reversal of the terror that was the most common emotion at the time in gay men.

No one knew who would next get the illness (A Fifteen-Year Perspective section, ¶ 4).

Further psychological effects experienced by gay men in a community experiencing the AIDS epidemic included feeling that HIV was developed as a plot to decimate the gay community (15% of respondents), and 94% of respondents felt that the lack of response by public health authorities and their failure to treat gay men with HIV was due to a lack of valuing the lives of homosexual men (Getty & Stern, 1990). Getty and Stern (1990) studied a population of gay men and found the following: Those men who lived in or near a large city (where several gay men have developed AIDS prior to the time of this study) perceived themselves to be more likely to have been infected. Their anxiety was evident in their symptoms of malaise, lethargy, reduced appetite, and difficulty sleeping (p.898).

From his clinical work in New York and San Francisco with gay men during the AIDS epidemic, Hopke (1992) observed that the psychological crisis that almost always ensued from the diagnosis of HIV had many parallels to the classic midlife patterns defined in Jungian theory. Hopke stated, “A man in the „first half of life‟ who received a positive result on the HIV antibody test is confronted immediately and abruptly with the possibility that he is perhaps not in the first half of life at all” (p.106). For Hopke, the experience of midlife includes looking inward, examining one‟s life, as opposed to focusing outward focus on life accomplishments. Hopke noted that gay men in their

13 twenties and thirties were looking inward. He cited the prevalence of gay men in urban settings reflecting on spiritual issues and finding unconventional avenues to explore this aspect of self.

Linde (1994) also cited the impact of AIDS on the developmental trajectory of adult gay men. She noted that gay men faced with AIDS began to reevaluate their lives, oftentimes with a positive result of personal growth enacted by making positive life changes. I found this to be true in my own clinical work with gay men, but I also found that this reevaluation was not always positive. In the mid 1990s I recall a 35-year-old gay male patient presenting to treatment with a concern about lost opportunities in his life. He had been diagnosed with AIDS 10 years earlier. Given his diagnosis, he left medical school, anticipating that he would have been dead before he could finish. He stated that he did not know what he would do with his life now that he was still alive. Due to newer treatments, including the introduction of protease inhibitors in patient trials, this man now anticipated living into midlife, if not longer.

Gay men searched for spiritual healing by reading books such as The Course of Miracles. This was a new trend for many gay men living in large urban settings. Blechner (1997) stated: There was even a belief that psychological ministrations would turn the disease around. People like Louise Hay told large groups of patients that AIDS could be healed by positive thinking, and while this led many people to have great hope, it was especially cruel when they became sicker” (A Fifteen-Year Perspective section, ¶ 15).

Gay men, exposed to the presence of AIDS in their social group were all confronted with mortality. Many of these men were in their twenties and thirties and thus were confronting mortality at a time earlier in their adult development than expected.

Cadwell (1994) writes about the “eruption of a disease in our midst that affects large

14 numbers of relatively young individuals” (p.5). The AIDS epidemic not only forced the confrontation of mortality for gay men, it isolated them due to the social factors of homophobia and stigmatization (Cadwell, 1994). Losses due to AIDS or anticipated by the threat of AIDS included not just the loss of others (friends and lovers) but personal losses in life described by Cohen and Abramowitz (1990): “Losses range from the concrete—job, income, social role, and physical health, and attractiveness—to the abstract—basic security, predictability, self-determination, being in control, and other means for the expression of healthy grandiosity, ambition and ideals (Disruption of Selfobject Bonds section, ¶ 1).

AIDS and Mourning By the end of the 1980s, mental health and medical care providers were publishing articles on the treatment needs of homosexual men resulting from HIV infections. Studies often focused on the topic of bereavement in gay men who were experiencing losses of significant persons due to AIDS. Wright and Coyle (1996) found that of 16 gay males in their study, 12 had experienced more than three AIDS-related deaths within their circle of gay friends within a 5 year period. They found that men in their study experienced a lack of social support due to the stigma associated with homosexuality and AIDS, and that the experience of bereavement due to the loss of a partner was complicated by a deficit of supportive friends due to the toll of AIDS in their social network. As well, the death of a partner due to AIDS reminded HIV-infected survivors of their own impending health decline and ultimate death (Wright & Coyle, 1996). Wright &and Coyle point out that the deaths experienced in the gay community

15 due to AIDS were deaths of a younger population, and thus the survivors of AIDS-related deaths were most often young men in their twenties and thirties.

Martin (1988) studied the psychological consequences to AIDS-related bereavement for gay men. His study population was a community sample of 754 gay men in New York. He concluded that his sample reflected a significant subset of the urban gay male population. Results showed that, “being bereaved of one or more close friends or a lover because of AIDS is a strong predictor of symptoms and behaviors associated with serious psychological distress among gay men” (Martin, 1988, p. 860). Gay men were not seen as adapting well during the AIDS epidemic because of the experience of multiple losses.

Writing about the experience of loss, Shelby (1994b) states that it “has become an integral aspect of the lives of the several generations of gay men who have directly encountered the acquired immunodeficiency syndrome (AIDS) epidemic” (p.53). From a self-psychology perspective, Cohen and Abramowitz (1990) noted that complicating anticipation of loss was the fact that, “the very lovers and friends a PWA [person with AIDS] needs to serve sustaining selfobject functions are often themselves dead or dying” (Disruption of Selfobject Bonds section, ¶ 2).

Shelby (1992) studied the differences in mourning for survivors of AIDS-related death, contrasting the differences in mourning for HIV-positive survivors and HIVnegative survivors. Besides reformulating a definition of mourning in the context of selfpsychology, Shelby also recognized that the mourner himself was coping with anticipation of their own death. He writes: Central to the disorganization and self-esteem difficulties are the massive loss of selfobject functions that the survivor experienced within the context of the

16 relationship, the loss of the shared experience or dialogue that occurs within a relationship, and any specific meaning that the loss entails (in the case of an AIDS-related death, the potential that the survivor may also die of the same disease) (Shelby, 1992, p.198).

The end of 1995 heralded the beginning of the end of the first wave of deaths due to AIDS, as protease inhibitors were introduced as a treatment that brought health back to disabled AIDS patients, many of whom are surviving today.

Midlife and Gay Men A review of literature defining midlife reveals that the age parameters are not clearly demarcated. Nemiroff and Calarusso (1990) define the middle years of adult development as occurring between 40 and 60 but recognize that all the stages of adult development have overlapping occurrences. They concluded that the stage framework based on Erik Erickson‟s work is not entirely useful when attempting to understand adulthood. Lachman and James (1997) stated, “midlife may be more aptly characterized by key events (e.g., menopause, empty nest) than by a particular age period” (p. 1).

Heckhausen (1997) stated, “when we take a wide-angle view of midlife as a period of development within the life span, its most characteristic feature is its position between a part of life with predominant growth, addition, perfection and gains and a part of life associated with decline, restriction, and losses ” (p. 347). The consensus on midlife recognizes that it is a time of reflection on ideals and dreams of life. It has been defined in the heterosexual population as a time marked by biological changes and by the period of time when parents find themselves alone. Lachman and James (1997) summarized this point: “According to our research, midlife appears to be a time to look back and a time to look ahead, a time to ask how are things going and what is left to do” (p. 3).

17 A general consensus does exist on one factor of adult development. It is in midlife that individuals begin to recognize their mortality (Galtzer-Levy & Cohler, 1993; Heckhausen, 1997; Nemiroff & Calarusso, 1990). Nemiroff and Colarusso (1990) stated, “by midlife, because of physical aging, the death of parents, the maturation of children, and the failure to achieve certain goals, most individuals, consciously or unconsciously, begin to consider their limited future and personal demise” (p.102). Heckhausen also described the midlife decades as a period of loss-related changes. She recognized that the earlier years of adult development are not typically marked by losses. In describing the development of life-course theory, Elder, et al (2003) noted that life-course considers the principle of timing. Thus, the same life event will create different effects on the individual, depending on the timing of the event in the course of development. This principle is pertinent for this study as the experience of loss for this population of gay men was experienced prematurely due to the AIDS epidemic.

As well as the recognition of mortality, another hallmark of midlife is defined by generativity, a construct first proposed by Erickson (1950/1963). Generativity is considered a primary psychological experience in midlife. Given that one accepts one‟s own future death, the experience of generativity stems from the desire to leave a legacy in this world: “Generativity is the concern for and commitment to promoting future generations” (McAdams, 2001, p. 396).

It cannot be ignored that gay men in their twenties and thirties living with the experience of the AIDS epidemic experienced psychological issues prematurely. In discussing gay men, midlife, and generativity, Cohler and Hoestetler (2000) stated the following:

18 Homophobic discrimination and stigma, the different structure and timing of gay life course, and the far-reaching effects of the AIDS pandemic have all contributed to a gay midlife experience that diverges from the heterosexual norm.

Many members of the present generation of middle-aged gay men have already experienced the kind of loss through AIDS that would be expectable at much later ages in the straight community. Having confronted so much loss, some of these men may be better prepared for the subsequent losses of friends and relatives (p.

232).

It is the purpose of this study to explore the experience of midlife gay men given the ideas put forth in the above statement. We do not know how these men in general have psychologically handled these early experiences of loss and personal threat to their lives.

Leading up to midlife, the adult generally has been looking forward, establishing and working to attain goals and aspirations. Generally, the early and middle adult experience is impacted by good physical health. Midlife is considered a period of transition in which the individual examines his life with a developing awareness of his eventual death. Hopke (1992) wrote that midlife is A period during which oneâ€&#x;s previous social adaptation, developed through youth and young adulthood, must be re-examined and often dismantled to make way for another way of being in the world and with oneself, a way of life more suited to advancing age (Hopke, 1992, p.102).

Midlife development has been widely studied, but exploratory studies on gay menâ€&#x;s adjustment in midlife are almost nonexistent. The maturing gay male may approach midlife with a fragmented sense of self if he has not successfully been able to build his self esteem and has lived his adult life with sense of separateness and alienation (Friend, 1987).

Kertzner (2001) studied homosexual identity in midlife using a phenomenological approach. In looking at midlife, Kertzner (2001) reviewed the literature on adult developmental perspectives in midlife and noted that stigmatized sexual identity is not

19 recognized for how it can affect psychosocial tasks of adulthood in studies of midlife from developmental perspectives. Kertzner (2001) commented, “the HIV epidemic has strongly shaped homosexual identity over the past 20 years by conflating sexual discovery and pleasure with illness” (p.81). Kertzner (2001) focused his study on homosexual identity, concluding, “the meaning of homosexual identity was highly variable among gay men, reflecting the heterogeneity of life experience described in study participants” (p.86). The problem with limiting a study to identity formation in gay men is that it inhibits a broader study of the complex psychological issues present in the development of gay men in their adult years. There is indeed heterogeneity of life experiences among gay men, as well as some very similar cultural and social experiences.

Clinical work with gay men is restricted if there is not a search for the complexity of psychological development beyond identity formation.

Quam and Whitford (1992) found that older gay men and lesbians who were involved in community programs and had a core group of friends reported a better adjustment to aging than those without such involvements. A greater fear about aging exists for gay men and lesbians living without close friends and a sense of community support. Obviously the question emerges as to how the social support system of gay men now in midlife is impacted by the losses experienced earlier in life because of AIDS. In summary, gay men in midlife not only came into their current developmental experience with the stigma of being gay, but also came into gay life, with the unique experience of living in an environment of crisis because of the AIDS epidemic. What is not known is whether, or to what extent, the midlife experiences of gay men who lived through this crisis have been impacted by it. To examine this question is one of the

20 purposes of this study. As described above, studies of midlife in populations at large have identified a constellation of psychological issues commonly worked through at this stage.

With an ear tuned to these issues, this study of gay men seeks to define psychological similarities and differences, if indeed any exist, taking into consideration that both the biological markers and social experiences of gay men are different than those of the general population.

Theoretical and Perceptual Framework Analysis of the data will be evaluated and discussed using concepts from lifecourse theory and concepts of self psychology. The literature published in the 1990s (Cohen & Abramowitz, 1990; Getty & Stern, 1990; Shelby, 1992) established the fact that gay men exposed to the developing information on AIDS in the gay community were aware of the possibility of their own death by virtue of their psychological association with or process of identification in their community. Thus the concept of adult annihilation anxiety also bears some discussion as a theoretical construct.

Life-Course Theory Life-course perspective has developed as a theoretical construct over the last several decades as the result of the growing body of data related to adult development.

Early psychoanalytic studies attributed all pathology to early infant development based on biological drives. Psychological development essentially was viewed as a process occurring only in the early years of life. The recognition of the complexity of development beyond infancy and the oedipal years grew out of several factors since the

21 1950s, including the growth of longitudinal research over time along with the recognition of rapid social changes since World War II (Elder et. al. 2003). The study of life-course is now considered a theoretical perspective that recognizes the continued development of the self over the entire life span. The use of life-course theory is especially pertinent to this study as it seeks to shed light on the life experience of midlife gay men. Life-course theory not only recognizes the continuing development of the self throughout the adult years, but also the specific effects of historical events in the development of the individual. Elder et.al. (2003) defined life-course as a theoretical perspective, stating, “this view is grounded in a contextualist perspective and emphasizes the implication of social pathways in historical time and place for human development and aging” (p. 4).

The experience of the current population of gay men who have come through this particular historical period of time is ripe for harvesting a good deal of information pertaining to adult developmental concerns.

Nemiroff and Colarusso (1990) assert that adult development is as dependent on the environmental influences as is child development. They have concluded through their clinical experiences that an event such as a loss of spouse is not merely one that potentially precipitates psychopathology, but also essentially a “major upheaval in one‟s life, leading to potentially serious psychopathology or to significant, new adult development” (Nemiroff & Colarusso, 1990, p. 99). This idea does not imply that adult development includes development of new psychic structures, but that in adult development, within these structures significant changes do occur. Simply stated, development of personality does occur in adulthood, shaped by environmental influences

22 that include relationship factors as well as historical events that impact psychological factors.

Self Psychology Self psychology will be used as the primary theoretical perspective as data is gathered, analyzed, and interpreted. The definition of self as conceived by Kohut (1971, 1977,) recognizes that it is a structure of the mind that is consistent over time. The self is the core of one‟s personality and is recognized not as an agency of the mind, but as something that “has various constituents which we acquire in the interplay with those persons in our earliest childhood environment whom we experience as selfobjects” (Kohut & Wolf, 1978). Kohut (1984) emphasizes that individuals require selfobjects throughout adult life. In the words of Galatzer-Levy and Cohler (1990), “selfobjects are psychological representations of others that are experienced as part of the self.” This latter statement implies that the individual experiences the selfobject as a part of the self, anticipating control as if the selfobject is a part of self. Another important aspect of selfobjects is that they are not in fact actual representations of another person, but rather functions experienced by the individual within the relationship to the other and related to as if they are a part of the self. Galatzer-Levy and Cohler (1990) succinctly define the function of selfobjects “to include not only mental representations that stabilize and vitalize the experience of the self, but also those that promote development by, as it were, holding the person through the periods of instability and change that are necessary for psychological development” (p. 94).

23 The self continues to need and utilize selfobject functions of others throughout the different phases of adult development, generally in phase-appropriate ways. The key idea is the concept of continued self development beyond the earliest phases of life (when the individual first begins self development by incorporating selfobjects functions, building internal structure). From infancy onward, important others in our environment have met our needs as well as frustrated or disappointed us. Kohut (1977) observed that in early relationships optimal frustration with the caretaker (within the self/selfobject matrix) allows the individual to incorporate selfobject functioning into the self, developing healthy mechanisms that become a part of the self. It is Kohutâ€&#x;s recognition of the need for selfobjects throughout life that establishes self-psychology as an especially pertinent perspective for the study of adult developmental issues (Kohut, 1977).

Kohut (1977) makes it clear that mature forms of selfobjects exist in adult life. As noted in the prior section of this paper, Shelby (1992) has studied the experience of massive loss due to AIDS among gay men. In his reformulation of mourning within the self-psychological framework, Shelby identifies that the degree of disorganization following loss depends on the degree of importance the individual served in maintaining self-cohesion. In mourning, the adult yearns not for a missing object but for the experience of the lost relationship, an experience that served in the maintenance of selfcohesion. The process of mourning includes the reorganization of intense affect states along with an integration of the loss into the experience of the self. New meanings develop. For this psychic reorganization, supportive others are required, creating an environment of selfobject functioning (Shelby, 1992, p. 219). Given that many gay men have experienced multiple losses (creating an environmental deficient in available

24 selfobject experiences), what impact could this create for gay men in reorganizing a coherent experience of self? How did adult development move forward given multiple losses in the selfobject environment? These are questions I raise and explore in conducting this study.

Galatzer-Levy and Cohler (1990) view development as occurring in significant ways throughout adult life, allowing for the idea that development may include “major shifts in personality” (p. 96). As development continues throughout adulthood, there is the implication that trauma in adult life may have significant influence on personality development. Kohut (1980) speaks to this idea of adult trauma in a discussion of the experience of Jews who survived the Nazi concentration camps. The experience in the camps created an environment devoid of selfobject supports. It is to this lack that Kohut attributes the self disorders observed in many survivors. He refers to the self-defects observed in survivors not as traumatic neuroses but as disorders of the self acquired in adult life as the result of the complete lack of selfobject support in the milieu (Kohut, 1980, p. 503).

Mortality, Adaptation, and Annihilation Theory in Relation to Trauma Given the descriptions of psychological responses occurring in gay men during the AIDS epidemic, a preliminary discussion of adult trauma theory is necessary. In psychoanalytic theory, trauma is most often associated with childhood experience or cumulative experiences. Little attention has been paid to adult trauma. Boulanger (2002) makes this point clear, criticizing psychoanalytic theory for failing to understand adult trauma and its capacity to provide meaning in one‟s life. This section provides a

25 discussion of trauma, recognizing that adult trauma, fear of death, and annihilation anxiety are all terms used in connection to this topic. Approaching this study, I initially thought the historical experience brought about by the AIDS epidemic (specifically referencing the experience of prematurely confronting mortality) could be considered a traumatic experience. In doing so, I initially assumed that I would be studying the impact of this trauma. In confronting my assumptions, I have confronted the fact that the psychological meaning of this past experience for each individual is unknown and thus is part of what is to be explored here. Boulanger (2002) emphasized the discovery of meaning and the organization of the experience when working with adult trauma. It is fair to say that experience of the early AIDS epidemic had the potential to cause psychological trauma.

For Kohut (1977), coming to terms with the concept of finiteness is an achievement of human development typically occurring in midlife years of adult development. It is achieved as the individual comes to understand the boundaries of self and others as well as the boundaries of the self socially and in physical space. It is in the middle years of life that the individual compares his achievements against his goals and ambitions. Against a backdrop of hopelessness in the early years of the AIDS epidemic, clinicians have described the psychological reactions of gay men, noting that fear of oneâ€&#x;s own death was a common experience. If not associated with being ill or diagnosed with AIDS, fear of dying was felt in response to the experiences of multiple losses of friends and acquaintances within the social support system (Cohen & Abramowitz,1990; Getty & Stern, 1990; Martin 1988,Wright & Coyle, 1996) and by process of identification (Shelby, 1992). Theoretically, we are confronted with the question of what

26 it means to the individual to experience multiple losses within their social network, in which identification is assumed to be a psychological process occurring by association.

The question of how one adapts to adult trauma or confronts mortality is raised here.

Kohut referred to the concept of disintegration anxiety in relation to trauma: “What is feared is not physical extinction but loss of humanness; a psychological death in which our humanness would permanently come to an end “(Kohut 1984, p. 16). This is in contrast to Freud‟s (1917) definition of anxiety. Freud defined anxiety in terms of a fear of mortal danger relating back to the earliest overwhelming experience of birth.

Hurvich (1989) examined the meaning of the traumatic situation in psychoanalytic theory, emphasizing that Freud placed the traumatic situation in the context of a threat to the survival of the organism. He cited the close connection of fears of being overwhelmed and fears of being annihilated contained in Freud‟s writings.

Hurvich (1989) proposed a definition of annihilation anxiety that includes feelings of being overwhelmed and feelings of falling apart, which is consistent with Kohut‟s idea of disintegration anxiety. Hurvich (2003) provided this definition of annihilation of anxiety: A mental content reflecting concerns over survival, preservation of the self, and the capacity to function. The danger associated with annihilation anxieties is a threat to one‟s survival. Manifest anxiety and psychic disruption are variables, extending from a thought-lie awareness of a threat to full-blown panic response (¶ 7).

Recognizing the contribution that Kohut‟s work provided to the concept of annihilation anxiety, Hurvich (2003) continued to define it as a threat to survival with its origins in early development. Fear of annihilation could be provoked throughout life in the face of a perceived threat to survival. Though Hurvich described annihilation anxiety in traditional Freudian terms, relating it to a biological threat to the organism, he also acknowledged Kohut‟s ideas of disintegration anxiety. As disintegration anxiety for

27 Kohut referred to disorders associated with the self, it is an experience that can be felt by nonpsychotics. This is relevant, as Hurvich (2003) recognized that traditionally, the fear of disintegration had been experienced only by psychotics.

In discussing the topic of adult trauma, Ornstein (1994) recognized the clinical significance of psychic continuity described by Kohut (1977). He stated that the individual retains “the sense of being the same person throughout life—despite changes in our body and mind, in our personality make-up, in our surrounding in which we live” (Kohut, 1977, p. 179). Ornstein then cited Stern‟s conclusions from infant research, noting that the core self is a result of the integration of memories. Stern (1985) referred to basic units of memory as RIGs (Representation of an Interaction that has become Generalized). Memories are composed of smaller units, chunks or episodes that build structure in infancy. Sometime in the second year of life, episodic memories take form, building on each other to create expectations of actions, feelings, or sensations. As structure is built from episodes of memory, lived experiences can be compared to past experiences, building memories of experience that become incorporated into a cohesive, core self. Traumatic memories can threaten this continuity of self. Ornstein differentiates between adult trauma and childhood trauma. Adult trauma generally occurs within the context of a sufficiently developed nuclear self. (The experience of trauma for individuals lacking a cohesive self is not discussed here.) For Kohut, the maintenance of a sense of continuity is reliant on a cohesive self. Throughout changes over time, a cohesive self allows for an enduring sense of identity.

Previously, I have noted my assumption that gay men who experienced a threat to their lives from AIDS in their community had experienced trauma. I recognized this as an

28 assumption going into this research, but this study looks to understand the impact of AIDS while setting aside assumptions. Assumptions exist, but it is data that is sought. If external experiences provoke an internal experience of psychological trauma, it is imperative to understand how to recognize this internal psychological experience.

Ornstein (1994) provides insight into recognizing trauma. Evidence of a traumatic experience is the presence of fragments of memory, with a split between cognitive recognition and the feelings associated with the event. Traumatic experiences can be recognized by the manner in which fragments of these memories come into consciousness. Ornstein (1994) noted that, “traumatic memories are not simple episodic memoriesâ€? (p.135). The fragments of traumatic memory can intrude as flashbacks or in dreams, disrupting the cohesiveness of the self. For Ornstein, (1994) it is disavowal that accounts for the mindâ€&#x;s inability to recall traumatic memory. Traumatic memories by their nature are unspeakable for fear that the original terror will be re-experienced. This creates a psychological conflict, as memories experienced as trauma require articulation for integration into the self, reestablishing the sense of cohesiveness. Given this, the key to integrating adult trauma into a cohesive self is the healing of a split due to disavowal.

Boulanger (2002) described accounts of survivors of trauma as emotionless. By virtue of their experience, these survivors have lost their subjectivity or humanness. This experience can create a feeling of fragmentation as the event is not incorporated into a cohesive narrative by the nuclear self. For Ornstein (1994), the intrusive fragments of memory need to be integrated by healing the split that keeps the often complex emotions from being consciously experienced and processed. A dialogue needs to occur in life or through clinical work to allow this healing.

29 There are different types of traumatic experiences. Some are experienced in isolation, such as rape or incest, and some are experienced by whole communities. The latter allows the opportunity for discussion of shared experiences. Ornstein points to the Holocaust as this type of traumatic experience. I maintain in this study that the early years of the AIDS epidemic had the potential to create a shared traumatic experience for those connected to a larger community of gay men. I accept that this trauma is vastly different from the Holocaust, in which we see the horrific intent of one man to eliminate an entire population out of prejudice, fear, and hatred. So with apologies to the survivors of the Holocaust and their families, I still think it is valid to look at the AIDS epidemic as a traumatic threat to a community.

The threat of AIDS is vastly different in a variety of ways. One manner in which it is different is that it is an internal threat, a virus within the body generating itself, building forces that can attack biologically, as opposed to an outside, external force. The fear of attack by this unseen internal perpetrator is felt in reactions to lived experiences such as visiting a sick or dying friend, attending multiple funerals, and/or opening a community newspaper to an obituary section and recognizing one or more pictures of the young men (cohorts) stricken by the disease. The psychological threat of attack for others would have been elicited in the necessary weekly doctor visits, by fears associated with the latest blood tests, or by waking to discover new lesions attacking the outer skin.

At least for a time, the multiple losses within this population, losses associated to an illness with no cure, were felt by many as threat to a whole population. It was not uncommon for many in the gay community to fault the United States administration for inadequately addressing research for treatment, creating paranoia in the community.

30 Citing the failure of the Reagan administration to aggressively address treatment and research in the face of AIDS, many felt that AIDS was a plot to eradicate gay men as a population (Getty & Stern 1990). This is an example of the internal unseen threat being externalized. Unable to see the attacker within, people externalized the threat as a plot by the Reagan administration. Indeed, the failure of the administration to react with funds for research and treatment left a population of gay men feeling that they had been failed by their government. Failures of the self/selfobject matrix create threats to the cohesion experience of the self.

For Kohut (1980), adult trauma is not marked by the biological threat to life but by the fear of the destruction of the self that will occur as selfobjects are lost in their environment. For Kohut, a vital factor in the healing of self in connection to adult trauma is the presence of selfobject support in the environment. Thus failures or loss of selfobject supports for Kohut can result in self defects that require therapeutic intervention.

Hoffman (1979) provided a discussion of mortality and the psychological adaptations and dynamic underpinnings associated with object loss. He recognized Kohut‟s premise that the individual‟s ideal adaptation to mortality occurs as a process of development. This development assumes self-development to the point of recognizing boundaries of the self within the self and selfobject system. Kohut is criticized for the acceptance of one‟s mortality along the line of narcissistic development as opposed to Freud‟s line of genetic development. Death anxiety for Kohut involves the fear associated with the anticipation of the disintegration of the nuclear self, a fear of fragmentation as opposed to a biological threat. Adaptation to mortality is characterized,

31 then, as a narcissistic transformation within the cohesive self that translates into a calm state of mind, a state of acceptance free from conflict.

Hoffman (1979) found in his research with parents of children who are diagnosed with a fatal disease that these parents displayed a healthy development toward an adaptation to death that did include conflicting emotions. He found that healthy coping can lead to profound developmental change. The parents in his study displayed an acceptance of their child‟s death while remaining hopeful. They focused their attention on their time remaining with their child, choosing to emphasize the quality of this time.

Hoffman considered their reactions to be healthy as they did not inhibit the process of mourning. Their reactions were not simply observed as denial, a defense that would inhibit mourning. These parents were also observed to generalize their emphasis on the quality of time remaining to themselves and their lives going forward, adopting an appreciation for how they lead their own lives. New meaning was found in the process of mourning. The reactions to death included anger, acceptance, doubt, and hope. Their experience of loss led to a developmental change as they wrestled with the meaning of their experience. Admittedly, Hoffman (1979) recognized that the reactions of the parents can be considered in psychoanalytic terms as disavowal and rationalization, but that conceptualizing these reactions only as defenses was an oversimplification. Many of the parents in his study came to terms with their own mortality. Hoffman concluded that there is a need for further studies that explicate the meanings of death for the individual, recognizing the limitation of Freud‟s work as well as others since Freud.

Gay men (whether partnered in life or not) form new “families” by developing a close circle of friends. In Hoffman (1979), we see a body of work that discusses the

32 developmental changes parents may undergo in response to the death of a child. Given that gay men suffered multiples losses of family members, and thus in response confronted their own mortality, the question is how surviving gay family members have processed the deaths of their loved ones.

Theoretical and Operational Definitions of Major Concepts Midlife: Midlife is defined first as a developmental phase of adult life. It is marked by its being a transformational period between an aggressive pursuit of goals and achievements and the confrontation of mortality. There is increased introspection that allows for the assessment of accomplishments, acceptance of failures or limitations and the ability to move forward to the later years after an examination and reformulation of priorities (Heckhausen, 1997). This period of time generally occurs between 40 and 65 years of age (Nemiroff & Calarusso, 1990).

Life-course theory: Life-course theory recognizes phases of development with specific developmental tasks and characteristics while also recognizing that development is based not only on internal psychological experiences but also on how these experiences have been impacted by external social and cultural experiences specific to the time period. It is a study of current life for a cohort that recognizes the context of past lived experiences (Elder et. al., 2003).

Self: Self refers to a psychological structure, the core of personality, established in a matrix of selfobject relationships (Kohut, 1971, 1977).

Selfobject: Selfobject refers to a human environment that consists of needed others. These needed others provide vital functions for the individual in terms of self-

33 development and the maintenance of self-cohesion. These functions (stemming from early parental self/selfobject experiences) maintain and restore the self, allowing for growth and fulfillment.

Statement of Assumptions This study is based on a number of assumptions noted below: 1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

Based on the literature, life-course theory is based on historical context that shapes development for a cohort with similar and/or shared experiences in time and place.

Midlife is a distinct developmental phase.

Midlife gay men have a multitude of earlier experiences that shape later adult development, but the experience of the AIDS epidemic created similar experiences for a specific population now in midlife years of development.

Based on the literature, a hallmark of midlife is the confrontation of mortality for the first time in adult development.

Gay men were profoundly impacted by the AIDS epidemic during its early years (1983 to the early 1990s).

The AIDS epidemic was a qualitatively different experience during the early years up until protease inhibitors were introduced as effective treatment.

The experience of the AIDS epidemic in the 1980s and early 1990s was qualitatively different for gay men living in larger metropolitan cities.

The sample population of gay men in this study will contain both HIVnegative men and HIV-positive men.

The men interviewed for this study will be able to articulate in a meaningful manner their current experiences in midlife and articulate the experience of the AIDS epidemic.

The methodology used in this study will be able to capture the meaning of the experiences articulated during interviews.

This population has been exposed to a psychological trauma. As such, powerful psychological forces will be present. The literature suggests that disavowal is a product of trauma (Ornstein, 1994), and thus strong resistances to remembering will be encountered.

Based on theory, experiences in adult years continue to shape development.

Based on theory, individuals need selfobjects throughout their lifespan.

Development of self in midlife is based on past developmental experiences of the self/selfobject matrix.

34

CHAPTER III

METHODOLOGY

Study Design The researcher utilized a grounded theory qualitative process based on methodology outlined by Strauss and Corbin (1998). The methodology lends itself to the exploration of “person‟s lives, lived experiences, behaviors, emotions, and feelings” (Strauss & Corbin, 1998, p. 11). Data was obtained from interviews with 20 volunteer respondents. All participants were screened for appropriateness. There were two major criteria for screening. Participants were solicited between 40 and 65 years of age. Second, each participant was screened for having a history of living in a large metropolitan city between the years 1980 and 1995.

Scope of Study, Population, and Sampling Open sampling (Strauss & Corbin, 1998, p. 203) was used relying on a practical approach and convenience. Respondents for this study were solicited through several means. Fliers (Appendix A) were sent out to medical providers known for working with gay patients in Chicago. They were asked to post the fliers in their waiting rooms. As well, a cover letter with the flier asked physicians to keep the study in mind and pass on

35 information among friends. Initially, fliers went out to eight medical providers in the north side of Chicago. Fliers accompanied with a cover letter were also sent out to professional colleagues providing outpatient psychotherapy. Again, they were asked to post the flier and to pass the information on to any friends or acquaintances. A flier was posted on a bulletin board at The Center on Halstead on the north side of Chicago. This agency (formerly known as Horizons Social Service Agency) provides a variety of social services in Chicagoâ€&#x;s GBLT community. A flier was also dropped off at Howard Brown Health Center, a medical service provider in the GBLT community.

I met with a group of gay men, part of a social group with a church in Chicago, and passed the flier around, along with business cards containing information regarding the study. A posting was also placed on the internet community site, Craigâ€&#x;s List. Initial volunteers came forth after these initial efforts. Some of the first participants responded to fliers and from the information passed along from professional. Participants also responded through snowballing. Snowball sampling involves the process of identifying additional volunteers by process of referral from someone already participating in the study (Anastas, 1999, p. 289).

Several months after initial efforts to solicit participants, 12 participants had agreed to being interviewed. After 3 months without additional volunteer participants, I preceded with additional solicitation efforts. I created a three minute video and placed it on the internet site YouTube.com. In this video, I described the purpose of the study, requirements for participation, and expectations of participants. At the same I sent out an e-mail to an acquaintance with a large e-mail network of gay men. Attached to the e-mail was a copy of the flier (Appendix B) and the link to the YouTube video. I also placed a posting on the internet site Facebook.

36 Grounded theory process is fluid, allowing for decisions to be made as data is analyzed and categories develop. In grounded theory research, emerging categories lead the researcher in the direction of gathering specific data in an effort to refine and elaborate the categories in the development of theory (Charmaz, 2006; Straus & Corbin, 1998). With the renewed efforts to solicit additional participants, I decided to focus on recruiting additional participants over the age of fifty. Of the initial 12 participants, the age of the volunteers was slanted in the age group under 50. The men over 50 who had volunteered in this group of men were men already involved in a gay community in 1980.

They were men who remembered the earliest news hitting the community about gay men becoming ill and dying, which was the start of the AIDS epidemic. It became apparent that more men in this older age group were needed in order to elaborate on the emerging categories from this group of men.

New efforts produced a number of responses. Again, snowballing accounted for additional volunteers. The total number of volunteers soon reached 20 gay men. As these interviews were being completed, it was apparent data saturation was being achieved.

Several additional men volunteered to participate. One additional participant was accepted into the study. He requested the opportunity to participate as he felt his story was unique. He was 44, and aware that I had focused recruitment of men over 50.He felt he wanted to tell his story as he had come out as gay at age 15 in 1980. As it was possible that his story could add to the data, he was the twenty-first and last participant accepted into the study.

37 Data Collection Methods and Instruments Data was initially collected from two separate interviews with each participant.

One participant did not follow-up for a second interview, but 20 men did complete two initial interviews. Participants were informed that they would be sent a copy of results and asked to participate in third interviews. The initial interviews averaged 1 hour in length. Second interviews averaged 45 minutes in length. Six participants followed up for third interviews. These third interviews averaged 30 minutes in length. Two additional participants indicated they wanted to participate in follow-up interviews. Brief comments were made in phone contact and in e-mails. These comments are included in the followup data. The lengthier interviews did not get scheduled. One of these men was encountering health problems that prevented him from additional follow-up Each interview was audio-taped and then later transcribed. The transcriptions provide the raw data for analysis. Memos were written throughout the interview and also included as data for analysis. These memos contained observations, quotes, and reactions of participants during the interviews. The interviews were conducted in person when possible. Some were conducted in the home of the participant, some in participantâ€&#x;s office, and some were conducted in my office. Other interviews were conducted by phone. These were conducted over speaker phone and recorded on a digital recorder, just as in-person interviews were.

The interviews began with open-ended questions. Initially, two broad questions were posed to the participant. The first question posed was, “Tell me about your life today.� Further questions developed from early interviews. Asking for elaboration on relationships, social life, work life, and family life became a part of initial interview questions. The initial questions included the following:

38         

How do you feel about your life now?

What do you find is important to you in your life?

How has what you found important changed since your twenties or thirties?

What did you expect to change in life as you moved into your forties and how did your expectations match up to what you have experienced in your life now?

Are there any surprises for you at this point?

Tell me about your work and how this part of your life has changed or not changed as you moved into your midlife years?

How do you feel about your job/career/work?

Tell me about your social life today and how you feel about any changes in this aspect of life over the years.

Generally, tell me how you feel most of the time.

The second category of questions were introduced with the statement, “Tell about

your memories of the AIDs epidemic from its beginning.” Additional questions included:                    

How and what do you first recall about the HIV in the gay community?

Do you remember how the news hit you?

What do you remember when you think about those first years of the epidemic?

How did it impact your life back then?

What type of changes did you make in your social life, your dating, and your sex life?

Can you talk about what it felt like back then?

Tell me about losses in your life from AIDS. Would you mind telling me your HIV status?

(If the participant is HIV-negative) Was there ever a time you assumed you were positive?

When did you first have an HIV test? What was that like how did you react?

(If the person is HIV-positive) When did you find out and do you have any idea when you seroconverted? Tell me about this part of your life, your effects on your health and mental health.

How has finding out you are HIV-positive effected your life now?

Was there ever a time you assumed you would die before your forties?

Tell me what you thought about the initial interview, your reactions, how it felt for you.

What has it been like for you over the last 14 years?

Do think about the AIDS years and do you talk about it with friends?

Do you ever find yourself thinking about lost friends, lovers, or acquaintances? If so, how does this come up?

Do you think there is an impact from the AIDS epidemic on your life today. If so, how would you describe that impact?

How do you think about death and dying today?

How do you think about spirituality today?

39 

Tell me about religion in your life today.

Procedure for Data Analysis Each individual interview was recorded and transcribed. Consistent with grounded theory research procedures (Cherry, 2000; Strauss & Corbin, 1998), the transcript provided the raw data for analysis. Analysis of the data included the process of writing memos. Strauss and Corbin (1998) stated that memos from early on in the process of analysis “record the progress, thoughts, feelings, and directions of the research and researcher� (p.218). Writing memos continued throughout analysis, providing crucial information in discerning concepts and their relationships that emerged from the data.

The data was analyzed in a three-stage process; (1) open coding, leading to (2) axial coding, and resulting in (3) selective coding. Once data analysis began, the processes of data analysis continued to run concurrently with additional interviews, arriving at theoretical constructs.

Open coding began with the examination of the initial interview and deconstructing the data. This continued with each interview until all the data was obtained and deconstructed. Open coding breaks the data down into discrete parts, examining and comparing the data constantly (Strauss & Corbin, 1998). This analytic process included line-by-line analysis of the interview content as well as examination of individual sentences and paragraphs. The intent of the initial examination of data was to discern the major idea contained within each sentence or paragraph. The process of analysis continued, examining the data from each interview, analyzing the content with a questioning stance and comparing new data with prior data.

40 Open coding continued with the process of deconstructing each interview, identifying descriptive quotes, and analyzing the data in a process of constant comparison. Descriptive categories emerged from this process beginning with the initial interview (Cherry, 2000). With each additional interview deconstruction continued, examining and comparing the data, initially analyzing it for whether it fit into an existing descriptive category. Strauss and Corbin (1998) stated that the researcher will evaluate each new nugget of data asking if it evokes similar imagery to the existing descriptive categories. New descriptive categories are developed as data fail to fit within existing categories. According to Strauss and Corbin (1998), The first step in theory building is conceptualizing. A concept is a labeled phenomenon. It is an abstract representation of an event, object, or action/interaction that a researcher identifies as being significant in the data. The purpose behind naming phenomena is to enable researchers to group similar events, happenings, and objects under a common heading or classification.

Although events or happenings might be discrete elements, the fact that they share common characteristics or related meanings enables them to be grouped (p. 103).

Time was devoted to analyzing the data from each interview in the manner described above, referring to previously recorded memos, and then developing further memos to assist the researcher in continuing to define the categories and develop subcategories. This analysis of the descriptive categories lead to the development of broader construct categories and began the process of axial coding. As defined by Cherry (2000), “construct categories are brief explanations for the different sets of descriptive topics” (p. 64). As they developed out of analysis, the construct categories explained the descriptive categories and their interrelations (Cherry, 2000).

Strauss and Corbin (1998) defined axial coding as, “the process of relating categories to their subcategories, termed „axial‟ because coding occurs around the axis of a category, linking categories at the level of properties and dimensions” (p. 123). In the

41 process of axial coding, the data which had been deconstructed in open coding was reassembled in ways that explained the phenomena being studied. Axial coding began at the point in the research process begins when connections between categories emerged.

Strauss and Corbin (1998) stated, “when analysts code axially, they look for answers to question such as why or how come, where, when, how, and with what results, and in so doing they uncover relationships among categories” (p.127). Open coding and axial coding both occurred side by side as analysis continued to a point of data saturation.

Construct categories continued to emerge from the data as it was examined. Each construct category was further defined discerning its properties and dimensions.

According to Strauss and Corbin (1998), “properties are the general or specific characteristics of attributes of a category, [and] dimensions represent the location of a property along a continuum or range” (p. 117). The next step in the process of analyzing the data was reached in the process of refining the construct categories, expanding and collapsing these categories until a point was attained at which no new categories emerged from the data. This was the point data saturation was recognized.

As data saturation was attained, the construct categories were compared and the analysis reached the last analytic process, which is referred to as selective coding: “Selective coding is the process of integrating and refining categories” (Strauss & Corbin, 1998, p. 143). The relationships between the major categories were analyzed to discern a central or core category. The core category is related to all categories and provides explanation for what is observed in the data. It is the main theme that develops from the analysis of the data. The emergence of a core category includes identification of the interrelatedness of all categories. Strauss and Corbin (1998) stated, “it is not until the

42 major categories are finally integrated to form a larger theoretical scheme that the research findings take the form of theory� (p. 143).

After results were analyzed and categories developed from the data, I employed the additional step of member checking. Participants were asked to participate in a third interview. Prior to these follow-up interviews, the results chapters (the six categories and defining properties) were sent via e-mail to the participants. Participants were asked to review the results and provide feedback and reactions to the data. Charmaz (2006) noted that typically this step is employed to gain confirmation of the information gleamed from the data by the participants, but it can also enlighten the categories. It incorporates an additional interview in which the material is discussed with the participant. Lincoln and Guba (1985) stated that member checking is a process that allows the researcher to establish credibility checking for factual and interpretive accuracy. Participants are asked if the results are recognizable as representations of their realities, thus the trustworthiness of the results which is analogous to the concept of internal validity.

The analysis of the data started with open coding, leading to axial coding and selective coding. The data was deconstructed, reconstructed, and analyzed for interrelatedness, arriving at theory grounded in the data. The major categories emerged from the data representing the stories of this group. The final step in data collection was member checking. This step facilitated further elaboration of the results and provided a check on the trustworthiness of the results.

43 Statement on Protecting the Rights of Human Subjects Risks and Benefits All participants were volunteers. Though there was no physical risk in this study, there existed potential for emotional distress. In order to minimize this potential, the researcher, an experienced clinician, screens for emotional vulnerability, disqualifying any volunteer who displayed a propensity to react with severe emotional response to participating in this study. Respondents in this study were asked to reminisce about a time in their lives. This carried potential to evoke emotionally distressing memories. The respondents were encouraged to discuss current relationships as well as losses experienced in their lives. It was conceivable in planning that some participants may experience some emotional distress. All participants were informed they had the option to suspend, delay, or end the interview at any time. Participants were also informed they could opt out of discussing aspects of their past experiences and lives that they felt to be too distressing. Interviews were interrupted when respondents exhibited intense emotion.

Participants were asked how they were doing and if they felt capable of continuing. Signs of tearfulness, expressions of anger or irritability, loss of focus, withdrawal and changes in tone or affect were all considered possible reactions alerting the researcher to interrupt the interview to evaluate levels of emotional distress and discomfort. If necessary, it was planned that additional clinical assistance would be offered. This would focus on an immediate debriefing and assessment of the level of distress. If the researcher detected any severe emotional distress during or after the interview process, the participant would have been offered at least three courtesy follow-up debriefing sessions with a qualified clinician. If further psychological treatment was assessed as necessary, referrals to a

44 community mental health clinic would have been made. All participants were provided with the telephone number of the researcher/clinician and encouraged to contact/consult with the researcher regarding any emotional reactions resulting from the study. Clients with a history of extreme mental impairments or mental illness were not considered eligible for inclusion in this study. The risk for severe emotional distress as a result of this study was considered as relatively low.

While this study did not provide any direct benefit to the participants, it is considered to be work that would greatly benefit the gay community of which all participants were a part, and to society as a whole. The information gathered was planned as information that would expand the body of knowledge of midlife gay men and incite further studies of this population. Given the potential to increase understanding of this population the benefits appeared to outweigh the risks.

Informed consent/assent The study participants were all members of a non-vulnerable adult population. All respondents participated as volunteers. Prior to starting the study, each participant was asked to read and sign an informed consent form (Appendix C). The informed consent utilized was the Institute for Clinical Social Work Individual Consent for Participation in Research form. This form briefly described the purpose of the study, procedure, and costs/benefits as well as any potential for risks and side effects. The form also contained information on privacy issues and confidentiality. The consent was thoroughly reviewed and participants asked if they understood the information in the consent form. If any

45 potential participant had chosen not to sign the form, they would not have been interviewed for this study.

Use of the Data The researcher made every effort to insure the confidentiality and privacy of all the participants. All data was acquired from interviews. All initial interviews conducted in person were conducted a private setting affording privacy. All telephone interviews were conducted in a private office setting using a speaker phone. Names of participants have not been used anywhere to identify the interviews maintaining confidentiality. Each audiotape and transcript was coded with a unique identifier. The audiotapes were transcribed as quickly as possible after interviews. After completion of the dissertation the recordings will be destroyed. Prior to being transcribed, the audio tapes had been kept in a locked file cabinet. All transcripts remain in a locked file cabinet in a private office and will remain stored for a period of three years after completing this study and then destroyed. All analytical notes will also be stored in a locked file for a period of three years and then destroyed. Each participant has been informed that final the final dissertation will be made available to them.

46

CHAPTER IV

INTRODUCTION TO RESULTS

The following six chapters present the results derived after analyzing 41 interviews, obtained from 21 participants. Each chapter title is a category. As described in the methodology section of this paper, it is the result of breaking down the interviews into discreet data and reorganizing the data into six categories with descriptive properties.

Chapter XI is a description of results obtained in follow-interviews conducted after sending participants a copy of the six results chapters. These follow-up interviews acted as member checking as well as an opportunity to obtain additional results. This introductory chapter provides a description of the participants and continues with a brief description the following six chapters, each of which represents a category with descriptive properties.

Participants Twenty-one gay men volunteered to be interviewed. They were informed of the studyâ€&#x;s purpose and intent according to criteria set up in the studyâ€&#x;s methodology. No remuneration was offered. Participants ranged in age from 44 to 65.

47 Eleven participants were partnered. The years together ranged from 7 years to 40 years. At the lower end of the spectrum were men that had been together 7 and 8 years together. At the higher end of this spectrum were men that had been together 37 and 40 years. The range in between was 10 years to 29 years. Of the 10 single men, only one was dating someone regularly. Others talked about the efforts and or frustrations of dating.

Four of the participants stated that they were HIV-positive.

Two of the participants had retired from their jobs. Coincidentally, both had retired from counseling jobs within school systems, though in different areas of the country. Three of the participants were involved in positions with institutions of higher learning, either in teaching roles or having moved into administration jobs. One participant had taken disability, and thus had essentially retired early in life due to health issues related to HIV infection. Three participants were unemployed at the time of interviews. One had recently been unemployed, and two had been searching for work for some time but had been finding it difficult due to the economy. Another self-employed participant was struggling with being underemployed due to the economy. One participant was teaching part-time, and planning a return to college for another degree.

One participant had left his nine-to-five job and moved away from Chicago, and was able to pursue his art work. One participant was employed in hospital supportive care. Other participants were employed in various business roles.

Participants were interviewed by phone and in person. Besides residing in Chicago, participants came from Boston, New York, Washington, D.C., rural Pennsylvania, Fort Lauderdale, Houston, Las Vegas, Cathedral City, Santa Monica, and

48 northern Michigan. The cities resided in between 1980 and 1995 included Chicago, Boston, New York, San Francisco, Houston, Indianapolis, and Los Angeles.

The Six Major Categories or Chapters The category Midlife is Fine presents a picture of gay men in midlife. These men self reported active lives and general life satisfaction. A couple of the men had suffered career setbacks due to the nation‟s second biggest recession, taking place at the time interviews were conducted. Generally these men described satisfying involvements with partners, and/or satisfying friendships, satisfying social networks, and career satisfaction.

For several participants, newer career achievements were enjoyed as a part of their midlife experience. Some were retired and finding new ways to keep active or create changes that energize their experience of midlife.

What Do You Remember? Asking the Questions Not Yet Asked begins a history of the AIDS epidemic obtained by asking historical questions, questions not previously posed to any of the men participating in this study. By inviting the participants to go back in time and discuss first recollections and memories of the time period following identification of what later became known as HIV, participants tell a story, experiencing for the first time a structured inquiry, creating a coherent narrative. This inquiry was chronologically oriented. It solicited reflection on, and recall of, memories and emotions associated with life events and experiences. It begins with memories of gay men becoming ill and dying in 1980 and at times even prior to 1980, the first memories of media coverage of a “gay cancer,” and the increasing media stories of a gay disease, leading up to recall of first hearing the term Acquired Immune Deficiency Disease. With

49 inquiry, participants recall what they encountered in their personal life and within the community. Participants were also asked to describe ways they felt the impact of AIDS in their life, including dating and sexual changes in their own lives.

Recalling Loss describes the recall of loss throughout the first epidemic years, that is, the memories as they were recalled in the initial interview. The descriptions of loss and the stories begin a process of recall, later recognized as the recall of readily available conscious memories.

I Canâ€&#x;t Believe I Forgot This reports the reactions to the first interview. When participants were asked in the second interview about their emotional reactions experienced since the first interview, they described their various emotional responses as well as additional memories of loss recalled after this historical period of time was brought to consciousness through the initial interview questions. Results reported here demonstrate the recall of memories, initially unavailable, a reconnection to emotional memories as well as additional experiences previously split off from consciousness.

Participants found themselves surprised to feel, to become tearful as these memories were evoked in response to being interviewed.

The Years Since 1995 describes the reactions to questions about the time period following the dramatic change in the AIDS epidemic in 1995, the year protease inhibitors were introduced as treatment. From 1995, new treatments restored health to the infirm and the very ill, and these therapies continue to maintain good health for those infected without physical compromise. A dramatic decrease in deaths was seen statistically from the point in which protease inhibitors were introduced as treatment for HIV infection.

50 Describing the Impact on Current Life presents the final results derived from the first and second interviews. It describes the participantâ€&#x;s reflections on life and philosophical thoughts, and asks whether these thoughts were felt as impact of the experience of the AIDS epidemic in their lives or from other life experiences. It includes thoughts about spirituality and mortality. None of these men had previously been asked, in a structured manner, to chronologically recall their experiences and organize their memories into a historical narrative.

51

CHAPTER V

MIDLIFE FEELS GOOD

I began each interview with the same question, inviting the participant to tell me how they felt about their current life. This category presents a picture of the midlife gay men participating in this study. It begins with the participants perceptions of their current emotional state of mind and then describes various aspects of life. The category is broken down into five properties: Life Satisfaction, Happiness, and a Few Setbacks; Expectations and Surprises; Ingredients for Happiness; Career and Midlife; and Health, HIV, and Midlife.

Life Satisfaction, Happiness, and a Few Setbacks The majority of responses created a picture of overall life satisfaction. A number of the participants expressed not only satisfaction with their lives, but feelings of great pleasure with their lives. The more exuberant responses included these comments: I consider myself extraordinarily fortunate the older I get.

I am happier than the typical middle-aged person.

I think I am at the best point in my life than I have ever been.

52 If comments on the state of midlife were not exuberant, they did reflect that participants felt enthusiastic about life: I embrace it, I love it. I am frightened by the economy and my job security, but the older I get, I have no issues with it [midlife].

I am still a kid at heart. I am a big kid and I embrace that part of me because I think it is what keeps me feeling youthful.

I love having fun and playing and joking and watching cartoons.

I love to have fun.

The feeling of being “very happy” was the most prevalent response to the question about life now. It included comments on taking early retirement, being content in a long-term relationship, feeling financially secure, and/or career satisfaction. There were also comments about feeling healthy and hanging out with younger friends, which contributed to feeling happy about life right now. Feeling fortunate was not uncommon, and in at least one participant, this was tied to feeling that midlife offers a second chance: I feel like I‟m actually in a second life because so many people that I knew back from the „70s are no longer with us, you know, and I miss them. I want so much to be able to tell them how great things are in my life.

There were some qualifiers to life satisfaction: I am fundamentally happy. I see a need to figure out what the next years are going to be about.

When I give a lot of thought to it that is when I struggle with it. When I am feeling healthy and good, when I look in the mirror and like what I see, and I see those that are younger, I say, „Hey not bad looking for a forty four year old guy.‟” The stronger qualifications concerning the happiness of in midlife were expressed by respondents out of work due to circumstances attributed to the major recession of 2009. Three of the participants were unemployed at the time of their interview, and one self-employed participant struggled with being underemployed, directly relating this

53 problem to the recession: “I have mixed feelings about life right now. I have had trouble finding work for the last year. Overall I feel good, but there are some areas where it feels frustrating.” Another qualified response referred to past career “hiccups,” but this participant continued: I seemed to have found a steady job for the foreseeable future. I am in a long-term relationship with man. We have a dog. We have a weekend house. We have good friends. I guess (I feel) pretty satisfied.

Expectations and Surprises All participants were asked to comment on whether there were surprises in life right now. This brought out the issue of expectations in life for many. A number of men noted that they had not had any expectations for their midlife years. One said, “I didn‟t have a vision of anything I might be. It was an empty slate.” Several participants noted surprise at having so much in their lives now, including a partner, a nice home, and comfortable lifestyle. One person noted that his expectation for midlife as a man in his twenties was that life would be “horrible.” He considered it surprising that he did not now experience his life as such and found his midlife years quiet enjoyable.

The question also prompted reflections on accomplishments, for example, “You know I achieved some of what I wanted. I didn‟t achieve [other things], and such is the course of life.” Surprise for a few men came in feeling they had achieved more in their careers than they had anticipated: “I didn‟t expect to have as much success to write a book at this age.”

54 The surprises encountered in midlife varied from individual to individual. For a couple of men, being unemployed and/or lacking financial security were the surprises for this period of their life. But unemployment did not account for all financial insecurity: I didn‟t do as much as I might have, say, putting money aside for retirement or investing or doing some of those things. And yeah, I think that AIDS wasn‟t the exclusive factor (for that), but that was one of the pieces to dismiss the idea that you don‟t have to be that responsible.

For another participant the surprise in his life came from coping with his partner‟s current non-HIV-related illness. Still another, having been in a relationship for 30 years, was surprised that in comparison to lives of loss and change for many in his family of origin, his life had been so stable and free of changes. A comment by one participant reflected a different kind of surprise in midlife: You know, I guess it would be surprising, saying that mentally you still feel as if you are in your twenties, not as frantic perhaps. You really feel like you‟re the same person. You are just smarter and more methodical because it is harder to get up and run around like when you were much younger.

Ingredients for Happiness Friendships, partner relationships, a sense of family, health, financial security, relationships with aging parents, and career accomplishments were all facets of life reported as the reasons behind life satisfaction and feelings of happiness. One participant in a relationship for over 30 years noted his partner was the most important part of his life now. For him this was connected to a number of things, including the loss of almost all his social network in the 1980s and the fact that the partner was now a fighting lifethreatening illness. Despite this unsettling situation, he described feeling positive about his life.

55 Other men in long-term relationships noted their pleasure in creating a home and being able to socialize, pride and satisfaction in providing their homes as a venue for parties, and entertaining friends and families. Good health was considered a common priority for life happiness, and for one the priority was “embracing my sexuality.”

Happiness was defined as having the resources to live, being healthy, and having friends, family, and social connection.

Friendship was the thing that came up most often as central to happiness both for men in relationships and for the single men in this study. Participants repeatedly noted that feeling socially connected was a primary aspect of life, providing satisfaction and feelings of comfort.

I still maintain some friendships with people from college and one person from high school. And I think that‟s probably what provides the most satisfaction.

I have a large circle of friends that is very satisfying. After 9/11, I went back to church and I‟m a regular member of [church name omitted] in Lincoln Park.

The speaker of the last comment continued on the topic of life satisfaction, stating that he also volunteered with a shelter. Volunteer work came up a number of times in responses: “I think my first priority is one that has been a part of me throughout my entire life, and that is what I can give back to my community and my world.” One of the older participants felt he gave back in his current friendships with gay men in their thirties, feeling he provided mentorship to younger gay men, especially younger gay couples.

Detailing the Aspects of Relationships Respondents were invited to go further into detailing the major aspects of their lives and relationships (including life partners, family and friends, and dating and sex),

56 their health, work or career, and volunteer involvements. This section will further describe the relationships of midlife men in this study, including those with life partners.

Relationships were generally described as being fulfilling and satisfying. For some, there were life-long friends. For others, a social network of friends was reinvented as many friends had been lost to AIDS. The study included two men who have been together with their respective partners for over 35 years, a few men that have in relationships since the beginning of the AIDS epidemic, and several men that had been in relationships that were 7 to 17 years in duration. The rest of the men were single. For all participants in long-term relationships, the use of the word “we” was quite prevalent. Decisions were described in terms of “we.”

These bonds came across as very important and a great source of comfort as the partners were sharing life experiences, including the AIDS epidemic. For a couple of participants, their current significant relationships began prior to the AIDS epidemic and were clearly sources of pride and life satisfaction. One of these men noted that there had been problems along the way necessitating couples therapy, but that his choice to be in a monogamous relationship was part of his motivation for participating in the study. He felt discriminated against in the gay community for this choice and wanted this side of gay life to be included in this study. In describing his long-term life with his partner, another participant noted he enjoyed the life he had expected: “Al and I have lived a very traditional middle-class life together…. The pattern of our life was established early on, and we really never deviated from that and that is A-OK with me and him.”

The partnered men repeatedly described with pride and satisfaction the lives built with their partners. In the words of one, “Well, I think that my relationship helps a lot

57 because I think that if I was really alone, then I would probably completely give up. But we have a nice life together.” Men described the joy they took in hosting dinners and parties in their homes. Friendships were described as important for men coupled: I have a partner of eight years. We have a zillion friends and we are all over the place all the time doing stuff, including some friends that we go on vacation with and weekend trips with and things like that.

One of our requirements when we were looking for a place was to have an actual guest room, because we have a number of friends out of town. That‟s why we had to have a room that was definitely designed as a guest room.

One participant noted his choice to adopt a child with his long-term partner. Their relationship began in the early 1980s. They adopted an infant about 18 years ago and not surprisingly found the decision to be profoundly life-changing. This participant remained active in a gay community but also found that he and his partner befriended more heterosexual couples. He found more in common with other families experiencing childrearing than with some of his previous friends: “The many single gay men who were our friends 15 years, 13 years ago, have largely withered out. Now, some of the [lost friendships] are casualties of the epidemic.” Though there were challenges raising a teenager, parenting was clearly a source of satisfaction and pride.

Participants described friendships primarily with men of similar age, but a few participants described being friends with younger men. One participant described the friendships he and he partner held with younger gay men as follows: “We have developed a whole circle of friends that are much younger than we are by 20 and 30 years. And they have kind of adopted us as surrogate parents.” This participant recounted with great pride his role as mentor, cherishing his ability to advise younger gay men and feeling included in their lives as part of their family.

58 A few men described loss of long-term partners due to AIDS within the last 15 years. Adjustment to the loss was a major aspect of life. The deceased partner was thought of every day. One participant described “retoolingâ€? after the death of this partner: Then I suddenly became single, so that took a lot of retooling in my mind, making that transfer because all of our friends saw us as a couple. I saw us as a couple, and we really didnâ€&#x;t think of each other as separate individuals. And then suddenly, I have to start rethinking of myself as an individual.

The single men in this study noted that friendships were a very important part of life. For them, data indicated that friendships took on even greater importance as friendships provided a source for the feeling of belonging, absent when not involved with a life-partner: You make your own family with the friends you develop.

I have a circle of friends now. I am happy with them.

Having good friends located in another state was cited as the factor that allowed one participant to make a recent move across the country to a new city.

Friendships provided comfort and were sources of emotional strength, and alleviated feelings of loneliness and loss. Several men described the experience of recreating friendships in life over the last 20 years, citing the loss of friends earlier in life.

Finding new involvements included joining a gay choral group, attending and being active with groups in a church, and finding volunteer groups lend time to and develop social contacts.

The state of being single was, for some, cause for reflection. Though friendships and active social lives were described as satisfying, the single men in this study did comment on being alone:

59 I probably expected not to be [coupled], so I have achieved my goal. I reflect on being single, I suppose, but I would probably reflect if I were in a relationship. I would reflect as often on being part of a relationship, so I don‟t think it weighs on me. It is just part of who I am at this moment in time.

Another participant stated, “Part of me wonders, did I maybe not develop the social skills, that in some way I am incapable of a relationship or is it just what is meant to be.” Some described their attempts at dating, but not with a great deal of hope: I am still dating, and I am on lots of web sites and all that, but part of me is thinking with middle age approaching, should I just give up the search and accept that this is my lot in life and focus on having a rich life as it is.

Single gay men did continue dating and engaging in active sex lives. One single participant commented on the prevalence of gay men online soliciting sex without the use of condoms (bare-backing): “You know, I just think how clueless these people are, and I usually don‟t preach, but sometimes I do. But that also is a reminder. It‟s like, you know, jeez, don‟t you know what has happened?”

One single participant commented on his change in dating now versus years ago.

In the 1980s and 1990s, he chose to steer away from dating anyone positive. His thoughts on this have changed: Now if I met the right guy today, I would absolutely go out with him. Life is too short. And it has been that way since the treatment modalities, since the cocktails.

So it is over 10 years now since I felt that way.

Though the above quote denotes a decrease in fear of AIDS, there were others who commented on dating as still feeling scary. One person noted that he still refrains from dating anyone that may have moved from New York to Chicago, or who travels a great deal to the East or West coasts: “Those profiles I skip over because my perception is that as a good Midwest boy, the coasts have higher incidences [of AIDS], which is probably not founded in reality.” Despite this latter admission, fears still impacted his

60 dating. The impact of HIV was still felt and noted in dating patterns. One of the adaptations described was to have sex only with someone they were dating as opposed to having casual sexual encounters. Another adaptation was to insist on joint HIV testing after dating a number of times, and if both were HIV-negative, then decisions about unsafe sex could be made. One comment reflecting the impact of AIDS on dating was clear: “Well of course, if the epidemic had not happened, I would still be the pig I was 20 years ago.�

Careers Several participants were able to take early retirement and found themselves busy with a variety of activities. One made a move to a rural area, fulfilling a lifelong desire to create a simpler, quieter lifestyle, away from an urban life. He made this change several years ago and described his adaptation and love for what he felt was a simpler and more fulfilling life. Another participant had the good fortune of financial security that allowed him to move from Chicago and work on developing a career around his art work. This section describes comments on retirement, career, job, job struggles, and job satisfaction.

Life clearly allowed for new opportunities for the three retired participants and the one participant on disability. Retirement was not a time to sit and do nothing, but a time to write, to help others, and to generally keep busy. Though prior work had been described as satisfying, early retirement was welcomed as it allowed for new activities, new ways to keep busy and find satisfaction: I think I have achieved most of the goals that I had set.

I think I am where I wanted to be. I left the city system where I worked for 33 years and decided to write.

61

Well, for me personally, I was happy with my career. And then I got this job that turned out to be the sort of perfect ending for a career. We had plenty of money to do what we wanted to do.

Two of the men voiced frustrations with trying to find work in today‟s economy.

Both these men were partnered in relationships and so had the help of their partners financially. But the frustration of being unemployed and unable to engage in satisfying work was considered a source of discontent and stress. One self-employed participant also felt the stress of lower income in his line of work, again attributed to the recession: “I just didn‟t think it would be this bad.”

For the majority of men, work was some source of satisfaction. Their emphasis on having a work ethic was important in feeling life satisfaction: I take pride in my job.

Work is obviously very satisfying or I wouldn‟t do it the way I do it.

I think that work will always be something important. I don‟t think I can ever get beyond it. It will always be a central focus of my life.

For one participant, work was less important: I have always thought that I work to have adequate income. The priorities for me have been pursuing my interests and my relationship. I have never been career focused. I‟ve done OK. I find it interesting to me, but I don‟t think it is interesting to the larger world.

Being HIV-positive, one participant noted he felt secure in the fact that his employer hired him knowing he was HIV-positive: “I have reached a point in my life where I am extremely satisfied. I have an incredible job. They hired me knowing that I was HIV-positive and it‟s an international company, so they could have just passed me over.”

62 Several of the men described in detail their careers and their pride in accomplishment over the years: One stated, “I have always had a goal in the company to move up to senior ranks, as far as I can go; the sky is the limit.” One participant felt a strong work ethic but felt that his job was not one that changed the world. Still, he was happy it provided financial security: “I take pride in my job, but there is a part of me that is bothered by the fact it doesn‟t make a difference in the world.”

I found several men advancing themselves in their careers in their midlife years.

One noted that in his later midlife years, he has attained greater recognitin for his work and with a feeling of astonishment at his age in midlife, a new accomplishment: “I feel lucky I have success. I just wrote my first book.” For another, there were hopes and plans for future advances within the ranks: I don‟t want to stay in the same position. I know there is a lot I can contribute. I have always had a goal in the company to move up to senior ranks as far as I can go. The sky is the limit. There are still firsts that need to be made, even within my company.

Future retirement was in the picture for some who felt driven in their work and were still advancing their status: I do hope to retire somewhere around 65. I think because of the way I work, because I work so hard, that I can‟t imagine working past 65 because I will be so exhausted. The next phase of my life will be a different kind of work, to read all those books. Work is very satisfying or I wouldn‟t do it the way I do it.

Participants described changing their lives after retirement, some still hoping to change their lives after having been thrown off course by the economy. A couple of men made major life changes. One of these men moved to a rural community. This move was the fulfillment of a long-term desire to get away from urban life. He described to keep active by helping new friends, caring for them and becoming involved in local programs, educating the naïve members of his new community on HIV infection. Another, with

63 financial security from his partner‟s death, decided to move across the country and start a new life, pursuing his lifelong desire to work on his artistic endeavors. Overall, these were all active men, whether retired or advancing their careers, or dealing with the frustrations of unemployment.

Being “out” as gay at work was noted to be important for a few participants: I would like to think I have softened peoples perspective, that they realize I am not a three-eyed monster and don‟t want to screw their children or their sheep.

I have always been out at work, since maybe my second or third job. I suppose if I have a heart-to-heart with one of them [a coworker], some of them would have a problem with homosexuality, but everyone deals with it just fine.

The perception that life was that it was not winding down. Though retirement figured into the life picture of some men, it was welcomed as time for new ways to be involved and feel useful. Some were still advancing careers and not reflecting on dreams lost but on goals yet to be attained. Identity was tied to work for some, and for others work was only was a means to live: It isn‟t all my self-identity. There are two other things that absorbed my time, being gay and being somewhat of an activist, and then my work. I think that work will always be something. I don‟t think I can get beyond it. It will always be a central focus of my life.

Health, HIV, and Midlife The complaints about health were comments made about general aches and pains that are experienced as merely annoying as one gets older, for example, “Except for the little aches and pains that everybody gets at 50, I guess I am good.” Participants overall felt fortunate in having good health: My current health is pretty good. I‟m at the weight that the American Diabetes Association says is the top I should be to be OK for my height and age. Of course I would like to lose those last 10 pounds.

64 The men who were HIV-positive reported a very hopeful and enthusiastic attitude towards life. They described active lives with good health. One described that after years of being HIV-positive, only within the recent months did he have an HIV-related illness: My health has been OK. It got me down for the first time during the summer. That was the first time. Something just hit me: You are not getting better. You need to see a doctor. And there was always a fear of doctors.

Men in committed relationships did not express a need to have HIV tests at this point in their lives. One person commented he found out he was tested without his knowing after having blood drawn for a new insurance policy. Some of the single HIVnegative men noted that they still test regularly: “I get tested regularly now, every 6 months to a year. I always have protected sex, but it still scares me. It has become easier to test as the test can be self administered.” Still, fears persisted: You know when you dial the phone and get the recorded announcement and they tell you the results, there is still the overwhelming sigh of relief. I know I am just amused by the fact that I feel that sense of relief. And I am not quite sure why I do. But I guess I can‟t keep my emotions in check with reason and, again, maybe it is a little bit of guilt where you agonize and scrutinize. Did I do oral sex?

Probably it is a little bit of survivor guilt that is producing that anxiousness that really shouldn‟t be there.

65

CHAPTER VI

WHAT DO YOU REMEMBER?

This chapter presents the results of inquiry into the participantsâ€&#x; historical recollections as they were elicited in the initial interviews and is broken down into subsections, each of which represents a property derived from analyzing data. I Remember Reading About It Before It Had a Name describes memories of first hearing about friends or acquaintances getting sick, reading an article in the paper, or talking about what was first called a gay cancer with friends, often memories attached to a place or a vivid moment in time.

HIV Hits the Senses describes memories of the 1980s as the epidemic unfolds in the social world of participants and the social environment of these gay men living in and/ or feeling connection to the gay community within an urban area.

Initial Personal Reactions describes the early memories associated to the first years of the AIDS epidemic, generally from 1980 through the mid-1980s. Participants initially responded with little emotional reaction and sometimes with a feeling that there was little impact.

It Was a Scary Time: The Emotional Impact Is Remembered describes the emotional recollections, the reconnection to past emotions that came forth as the interviews took participants deeper into the historical experience of the AIDS epidemic.

66 Feeling Powerless is a section that takes one of the most often mentioned emotional responses described by participants and describes it in greater detail.

Impact on Life describes the memories recalled in questioning participants about the impact of HIV on personal decisions about testing for the virus, dating, relationships, and so on due to AIDS in the community.

I Remember Hearing about It Before It Had a Name It is accepted today that AIDS is not exclusively a disease impacting gay men and that anyone exchanging bodily fluids can acquire HIV. The first memories of the illnesses and deaths, later recognized as a result of HIV infection, were memories exclusively associated with gay men in large urban centers. The participants, across the board, remember hearing of or reading about illnesses in major U.S. cities impacting gay men and only gay men. Their recollections came quickly and with little hesitation, as the first historical question I posed pertained specifically to first encountering news about HIV and AIDS. Participants remembered the early reports of illness and deaths impacting gay men: “I actually realized that I was hearing about it before it had a name.”

The news reports between the years 1980 and 1983 are remembered for their description of a gay cancer. Many first heard of AIDS by reading an article in the media: “Yeah, it was the autumn of 1981, and I remember specifically looking in the paper—for some reason the Sun Times comes to mind, because it is a tabloid I suppose.”Others recalled first memories of AIDS within their social network: All of a sudden you started hearing about these gay guys that had became ill and then 9 months later were dead.

67 I remember it vividly. It started in the late ‟70s. We ran with a crowd that had a few guys that were definitely in the fast lane.

In describing the illness of a deceased acquaintance, one participant stated, “That was the late „70s, and then we started to read specifically in New York and San Francisco about a new gay disease.” Again, referring to a time in the late 1970s: Well, one person in that group suddenly became very ill, seemingly for no reason, and at first people [the participant paused here, then went one]. He thought that he had the flu, and he started to lose weight and doctors thought he had done a lot of traveling. And they thought he had picked up some sort of intestinal bug or something. And we were all just very puzzled and within 6 months he was dead.

Another man described the illness and death of a friend in the late 1970s and not knowing what it was, but later putting it together: We wondered what it was about, and now we know that it had to have been it. But at the time it was completely foreign. His doctors had no clue what was wrong with him. They just couldn‟t figure it out.

Overall these men recalled first hearing or reading about gay illnesses, AIDSrelated illness and death before it was called AIDS, but these illnesses were all associated with gay men and not anyone else. Men were getting sick and dying, but at first it was a mystery. The memories solicited here reflect this time in history and are summed up in these quotes: We had a house on Fire Island in the Pines at the time. I had heard rumors at the Institute of this mysterious thing that was happening. It may have been 1980. By 1982 somebody we played bridge with was diagnosed. Nobody really knew at the time. Later on it was diagnosed he had AIDS. It was in the late „70s and early „80s when they started to talk about a gay disease, a gay cancer, because at that time most everybody developed Kaposi‟s. And even the name that they gave it at the time was GRID, gay-related.

68 In this last quote, the participant couldn‟t recall the rest of the term GRID, which of was “infectious disease.” One man described news he received about a friend‟s boyfriend: He was dating a guy in Virginia, and I remember Nick writing me about this guy succumbing to this mysterious illness that seemed to be like pneumonia and nobody knew what it was. In retrospect, I realized this fellow was one of the first to die of AIDs. It had not even become GRID at that moment.

The description of a “growing awareness,” which was echoed by several participants, is exemplified here as the participant quoted above describes witnessing a friend back home in the Midwest get sick but not feeling a personal impact until he took a trip to New York and went out to a bar: And there was like two or three guys there that were obviously sick and that was… [pause]. I could remember that as hitting me. I had already seen my friend with the illness, so I was aware of it, but that was the first time when I‟d seen a lot of people at one time, and I remember noticing it and thinking about it, and [its] affecting me.

A few participants recalled coming to terms with AIDS only after seeing evidence of the illness in their lives. Others felt the impact of the news immediately. Their recall of first reading about gay men dying was strikingly anchored in time and place: I remember it very clearly. I was living in Boston at the time. It was a Saturday. It was cloudy outside and I remember reading the newspaper. I don‟t remember whether it was the New York Times or the Advocate, but I remember reading this very short article that spoke about the strange illness that was showing up in gay men in Los Angeles and I think it was New York. It is extremely clear. I even remember the apartment where I was living and the room where I read that article.

Because reading that I felt like I got hit by a bolt of lightning. Yeah, I feel like I got hit by a bolt of lightning.

I moved to San Francisco in June of 1981. The first article about GRID came out in July or something, or somewhere around there. I moved to San Francisco, so I was in the epicenter of a lot of that.

But early in the year of „82, my friend Doug and I were at the restaurant. It was a Saturday morning. We did brunch sometimes, and he had the paper and he was reading it. And there was this odd article in there, and it concerned some new

69 plague disease of sorts that only seemed to afflict gay men, and waiters in particular of all things, at least at that point.

I could tell you the exact time. It was in fact the early „80s and I would say more like „82, „83, because I specifically even remember around the time that—yeah, I really started being a practicing homosexual—an old phrase used at the time. I‟m going to say it was „81 or so when the first news stories started to come out about the gay cancer and a strange gay disease. It is almost like the movie Long Time Companion, you know, they‟re reading it in the New York Times. Well, we had similar experiences in the L.A. Times, but it was very distinct for me as I became active.

Over the first few years of news reports, there was a growing sense of importance and crisis. The manner in which participants saw articles appear in the press was recalled: I remember specifically looking in the paper—for some reason the Sun Times comes to mind, because it is a tabloid I suppose. And you saw the articles go from like page 80 in the paper to 50, to 30, to 5, to the front page over the course of 6 or 7 months.

The reactions to first encountering the publicity about AIDS are broken down into two categories: those of men who felt a strong initial emotional response and those whose emotional response was gradual. The first is represented in responses such as, “I remember a sense of anxiety and contamination. It is like „Oh shit.‟ I am beginning to explore this, my sexuality, and now it is dangerous in ways I can‟t get my head around.”

The following response describes a more gradual awareness and emotional response: Pretty much, I guess, like anyone, you started hearing about it on news, and kind of the same as now when you hear about a new flu or something in some other country, you hear about it and you don‟t think much of it. And of course you don‟t know if it is going to affect the whole world or your country or your particular community. So I didn‟t pay much attention at first, and then listened to it a little closer, and I guess like anyone, it‟s like, “Oh, that‟s somewhere else and it‟s not going to happen to me” kind of thing. And so you start hearing about it in your city and start paying more attention.

In summary, participants‟ first memories of the AIDS epidemic were vividly recalled. These men remembered the early stories of gay men afflicted and/or dying of mysterious illness and the early media reports that identified a gay cancer or GRID.

70 Participants recalled how some gay men showed an immediate emotional reaction to news and others reacted more gradually as news stories continued and were digested. All men reported feeling scared, processing the news as a potential, personal threat.

HIV Hits the Senses This section describes participants‟ recollections when asked what it was like living in an urban area when the epidemic hit, some in Chicago, some in New York, San Francisco, Los Angeles, Houston, or Boston. They described their recollections from the mid-1980s. Specifically, participants were asked to describe what they recalled in these earliest years of AIDS. Some described their experience of seeing friends or hearing about friends and acquaintances getting ill. The intensity of the emotional impact comes through in this description: “I started meeting people that had the virus. They started dropping like flies.” The emotional intensity is also exemplified in these quotes: It would have been in the summer of 1983. I very clearly remember visiting one of my good friends in the hospital, who was very sick and died very quickly. And then another manifestation was that working in a luxury hotel, there were several employees who got sick and died pretty quickly as well.

It was just an agonizing death for so many guys. It was just one illness after another. Oh, and a couple of our friends got dementia and so they lost their [minds]. They didn‟t even know what was happening to them. That was rough.

Then whoa, it was like seeing people that you know and then hearing whispers.

That terrified me. I didn‟t know how to react.

The traumatic imagery of repeatedly being hit, as if bombs were falling, comes out in this description: He tells me, when I went to see him in the hospital in late „84, I have what Bob had, and Bob had just recently passed. And then all of a sudden, just boom, boom, boom, this one‟s got it, that one‟s got it, that one‟s got it, and they are acquaintances. Yet it just spooked everybody, and then it comes closer and then its people I know at the store.

71 Other descriptions were less dramatic but carried the emotional tone of witnessing tragedy: The way it hit me was seeing people that I knew casually get sick, and I would say if some friends had a party, then they would whisper and say, “Oh, he‟s got the disease.” Or you go to the party and meet someone very casually and then bump into them 6 months later. I remember that happening in a shopping center.

The gentleman looked much different. He was up front about it, and he said, “I got AIDS.” I was trying to think about this this morning because I really can‟t put an exact date on it. I remember I had a friend of a friend who was the first person that I knew that got sick with the Kaposi‟s syndrome and pneumonia and all of that, and he was really sick and he got sick very quickly.

Participants described seeing very ill men on the streets of New York or San Francisco: In the early „90s we went to San Francisco to visit some friends and I remember walking down Market Street. We had been there a number of times before. I could not believe the number of young people with canes and terribly gaunt looks and friends of mine that had become ill and how they‟d aged. And then you picked up the gay papers and there were like five pages of obit notes and they are all 20 and 30 and 40. They‟re all young people. It was like losing a whole generation of the gay population, and it really amazed me how the gay population was so out in San Francisco, but how evident the destruction had been. There was a place that you could leave ashes. It was a park and they had to keep closing it and shoveling the ashes away because they were getting so deep.

The physical symptoms of AIDS could not go unnoticed, as shown by the following descriptions of what men were seeing on the city streets: In the summers sometimes you would notice a small purple blotch on someone‟s arm and then pretty soon the next time that you would see them you would see more than one. I remember guys used to wear make-up to try to cover spots, particularly if they had any on their face.

I remember looking at people and seeing that they looked like they were going to die. They had no color. They were skinny, and they looked tired and they were still working. I saw people declining around me.

72 Initial Reactions: It Wasn‟t So Bad for Me More than one participant initially stated he had not lost as many friends as other gay men and felt less impacted than other gay men. When asked about his personal experience of the epidemic, one participant who worked in the arts in New York initially commented that he did not believe he was impacted as much as many other gay men. But then he remembered the phone calls that he received almost every day. These calls came from friends and were information about the death of “another young man who had moved to the city to pursue a career in performing.” At this point in the initial interview, he stopped and his eyes filled with tears. Within minutes his affect changed. He continued crying and apologized, stating he did not expect this emotion at all. His initial impression that he had not felt as impacted as others changed after he realized that he had almost forgotten these regular calls in which he heard news of young gay men dying from AIDS. These were all men who had gone to New York to pursue careers in the arts. Later in the interview, this participant also recalled seeing men looking sick, gaunt, and weak on the streets of New York. The phenomenon of hearing about AIDS by word of mouth was not unique to this participant, as shown by the following: There was constant communication by phone of course. There were no e-mails back then. There weren‟t cell phones either. But people talking, you know, “Have you seen Joe in a while?” “No I haven‟t.” “I saw him the other night and he just looks so thin and I‟m worried that maybe him too.” It was constantly on people‟s mind.

Two other participants also began their interviews by stating that they felt less of a personal impact than other gay men. One of these also had lived in New York in the 1980s. He did not feel he lost many friends in comparison to other gay men, but he did vividly recall seeing young men walking with canes and looking thin, gaunt, and weak while he was walking to work or riding a train.

73 Whereas one participant described losing almost everyone in his address book, another noted, “I didn‟t have the horrible, devastation of having my address book completely dwindle down, or have to go to many memorial services.” Another felt that living in West Hollywood in the 1980s left him less impacted than gay men living in San Francisco, but he did remember seeing a few men with AIDS on the streets of West Hollywood: “I‟m not saying that there weren‟t any, but you would see the odd person or so. It was not that prevalent, [but] again, maybe that was just my experience.” One of the younger men in the study stated, I didn‟t have that same experience because I didn‟t have a lot of older gay friends and I didn‟t work in a gay environment. I didn‟t work in the Merchandise Mart.

My sister can tell great stories. She was decorating her first home at the time, and she would go down to the Mart. And she was astounded in those first early years, like „85, ‟86, and ‟87—salesmen dropping like flies.

It Was a Scary Time: The Emotional Impact Is Remembered Participants were asked to specifically recall their emotional experience at the time of the epidemic: Oh, you had to steal yourself. You had to at some level try to distance yourself emotionally because it was [there was pause here]. I guess I‟ve never been in the service because I had a teaching deferment. And I think that it was almost like people had to do in a war zone. You just had to somehow shut off part of you where you don‟t function.

As the initial interviews continued with further inquiry into the history of the AIDS epidemic, the “bad” emotions, painful emotions and feelings of dread, were described: I do remember the time. It was a really bad time, and it just seemed like a whole lot of people died all at the same time and it was unusual.

To say that it was extremely painful experience is a gross understatement.

74 It was like, but for the grace of God there goes I. The next statement also exemplifies the emotion of the time: You dreaded seeing people that you hadn‟t seen in a couple of months, friends in other cities: what are they going to look like? Are they going to be ill, particularly our single friends, but about our coupled friends, they were not immune either.

One participant, coming out as the epidemic was unfolding, described his emotional reaction at the time by his behavioral response: “So, you know, I was drunk for about 6 months.” All the participants described experiencing fear. The following quotes dramatically exemplify the emotional tone of the responses to the impact of AIDS expressed in the interviews: He looked like a Nazi concentration camp victim. My reaction was, „Oh my god, I am glad it is not me.‟ And that was horrible. I was kind of selfish. I was afraid to get tested.

We were really scared for a good 2 years I think. People were in general. That‟s all anyone talked about.

Fear even infiltrated recreational life: We were sitting around the pool and overheard that the place was going to change and be a place for people with AIDS. And there was someone around the pool passing a joint, and my friend was trying to say to me, “Don‟t take it. It could be someone with AIDS.” And you know, even saliva was suspect back then However, there were other emotions besides fear: “Shock. It was never fear. It was like I was getting nailed in the sense of this is going to happen to me.” Further, there was the feeling of surprise for men who did not get sick or die: I think that I was fearful that it might happen to me, certainly. There was a selfish response, meaning about my health. There was a little bit of survivor‟s guilt. Why hasn‟t this happened to me? Why did I get lucky? On the other hand, it was more questioning, in that I should have gotten it.

I felt the impact of these strong feelings expressed in the first interviews. During a busy period over several weeks of conducing four to five initial interviews a week, I

75 found myself waking nightly and getting back to sleep only with great difficulty. When sleep did return, I would often wake up again and toss for an hour or more. I remembered statements from the interviews such as, It became just a nightmare that here we were in our thirties, witnessing friends get ill and die in a way that our parentâ€&#x;s generation was just starting to do, not our generation at thirty. And there was no hope at that point. There was nothing available. I mean, it was just fend off and treat the diseases that people got as a result of it. It wasnâ€&#x;t even known what was causing it. So, it was really painful.

My address book was just—I mean, it just seemed like every month we had a memorial service or a funeral to go to.

As a researcher encountering several busy weeks of these interviews, I realized I was emotionally impacted, feeling myself continually bombarded with emotional pain.

The researcher at this point could not be separated from the person who was also a member of the population being studied. I remembered my own experiences as a gay man living in Chicago in the 1980s and 1990s. I remembered seeing men in the locker room with purple blotches, hearing the whispers on a Sunday afternoon while socializing with friends at the lakefront in Chicago, and reading multiple obituaries of gay men in the weekly gay papers, recognizing faces, some acquaintances, some just faces from the around the neighborhood. I realized during this period of restless sleep that I myself was in the process of remembering. I recalled I too had felt as if I had been hit over and over again with seeing men with AIDS and/or hearing about someone who had entered the hospital and was dead within weeks. It took a couple weeks following the completion of interviews to return to nights without interrupted sleep. Given my emotional response as researcher immersed in intensely emotional material and given my personal experiences, I met several times with my dissertation committee chairman for the purpose of debriefing in order to control for bias.

76 Participants described their reactions of feeling alienated, helpless, and discriminated against, but these memories were accompanied by recollections of the gay community‟s response to AIDS hitting members of the community. Gay men over and over responded to the need to help each other, and people told stories of taking care of friends, and sometimes partners or ex-partners. Participants took pride and comfort in remembering how gay men had taken care of each other: “I experienced true heroism. I was proud of how the gay community was responding.” One participant remembered, “a sense of solidarity and community [born] out of heroism [and] the extraordinary sacrificial lives people were living to support their partners, people who had been victimized by their identity of being HIV-positive.”

Participants‟ memories included descriptions of a stunned community in which many gay men endured the impact of AIDS in silence because perceived homophobia made it uncomfortable for them to talk about what they were witnessing in their community. This lack of immediate response comes across in the following: I think in general a lot of people did not respond. I can for example remember going to one particular bar in Boston on a Saturday and it was as though there wasn‟t anything wrong.

I think a large part of the epidemic in the early days was endured in silence. It was not safe or comfortable to talk about it outside the gay culture.

Other participants remembered an initial sense of “not knowing enough” as gay communities first encountered AIDS: You didn‟t know what sexual practices were more or less likely to cause you to become infected. They just didn‟t know early on, but yes, it was always in, not even the back of every gay man‟s mind, it was in the front of their mind. I could be next.

And then not knowing what‟s going on, knowing, “OK, this person has AIDS,“ but not knowing exactly the reality of it. It was almost like living it, almost like

77 delusional. There was a separation. It was over here. You know it. You see it. You didn‟t know all about it. There was a separation.

Some participants attributed their initial reactions to where and how they were living their lives at the time. One felt his awareness was became greater when he moved to a larger city with a gay community and described that this was when he really came out. Another attributed his initial reaction of feeling that AIDS wasn‟t affecting him in his life to not living in a major city during the initial years. Another participant living in New York in the early 1980s stated, “I didn‟t feel like anybody in my circle got touched by it the first couple years. Then all of a sudden it got intense.” One participant described why he felt he had a different awareness than others: Some people that maybe were more aware, maybe people that traveled more, and being part of the community brought it, the awareness of it, to the community faster than what I might have realized it myself just watching the news.

Fear, shock, and sadness were described and almost expected in some form.

Another reaction at the time was the feeling of emotional vulnerability that came out as participants described the feeling of discrimination, which they felt to be highlighted during the AIDS epidemic: I was hit with the reality that there were a lot of people out there who were not comfortable with me to begin with and now had another layer to deal with. The idea that people thought they could get sick just being around me disturbed me.

HIV was a joke in the early years. It was a joke in that it was a way to discriminate against gay people.

You know, gay equals AIDS in the early part of the epidemic. I mean it just did, so it was a new way to discriminate against gay people.

There were a lot of this kind prejudice, and even the newspaper had comic strips of women going in to see their gay hairdressers with football helmets on because they didn‟t want to be touched by gay people with AIDS.

78 These descriptions were accompanied with tones of anger, resentment, or defensiveness: “There was this idea that if there was already a constitutional idea that we were flawed, this was another nail in the development of that idea.” One participant recalled discrimination in Houston: “During that period restaurants closed up because nobody wanted to eat at them. People thought, „I can‟t eat there. I‟ll get AIDS,‟ just because Montrose was considered the gay area.” This last quote defines the history of discrimination gay men felt. This discrimination created a lack of public response: It did have a big effect and also realizing that you weren‟t getting or probably going to get much help from anybody outside the community because it was a gay thing, and of course that went on for many years until it became such a big thing worldwide that even our government would almost look uncaring and stupid to not even mention it or get involved.

Feeling Powerless In different ways men handled feelings of powerlessness. Many gay men found themselves involved, from the personal level to the community level. In facing an illness that had no cure, gay men took care of each other: Right, there are people out there that are sick and needing help, and we were doing it.

Absolutely, we really pulled together.

People, friendship circles were really bonded together. We did what had to be done. At some level there was a great deal of pride in the way that the gay community as friends reacted. We became the family for our friends.

As I heard stories of action, involvement, and volunteerism, I included questions specific to this line of inquiry into subsequent interviews. These things were common at the time. For some, the involvements were at an individual level: “I was going to start calling drug companies, who on one hand are kind of like evil, bad corporations, but on

79 the other hand, if it leads to a cure.” Beyond individual actions, men volunteered in organizations and churches. These were institutions that rose to action to help those impacted by HIV. Men became involved with the Names Project. The Name Project started as an organization in San Francisco. In a storefront, this organization provided direction for families, friends, and partners for creating a memorial quilt to their loved one lost to AIDS. The quilts were put together in massive displays nationally.

A participant described his involvement with his church, which held funerals for victims of AIDS when other churches refused to do so: “It‟s like people with AIDS became a frequent part of your life. It wasn‟t unusual at this point.” Gay men rose to action in varied group activities: “Yes, I was involved in this group Miss Camp America in Houston. It was a 501c and it donated lots of lots of money to several charities each year.” Some responded to powerlessness with political activism: For awhile I did belong to the gay political caucus.

We marched on the White House, when everybody was saying four more years for George Bush, we were saying four more weeks. So for me that was interesting. I‟ve never participated in anything like that.

The reaction to powerlessness was explicitly apparent in this recollection: Rather than waiting to die and feeling powerless, I decided to grab the power for myself and do something about it. In terms of HIV, I think there my action in terms of doing something about it was manifested by getting involved with Gay Men‟s Health Crises. As an early volunteer, my work was involved with both those men and the families of one. It was a fearless time for me. I felt like it was guerilla warfare in a sense, in that we were making it up as we went along. My job at the Gay Men‟s Health Crises was called a crises intervention counselor.

Today we call that a case manager.

Some of the memories of involvement included detailed stories. These were emotionally laden experiences: One of the things that I did while this man was sick was tend to the parents, because the young man was getting almost everything he needed in the hospital.

80 And I was even able to help the parents give them options for when their son died.

I remember the stepmother of this young man saying to me, “Why are you being so nice to us?” And her tone of voice was almost in an accusatory and suspicious way. Not almost, it was.

Describing a conflicted decision to leave a Roman Catholic congregation, one of the participants described his choice, along with his partner‟s, to attend an Episcopalian church: “They had extraordinary support systems both socially and liturgically to deal with death. It had a very large gay contingent, probably half the population. At that point we became Episcopalians.”

A number of men responded to the epidemic with increased involvement in their church, strengthening feelings of faith: Later on I became involved in a church in Indianapolis. I didn‟t know it at the time, but it didn‟t matter one way or the other: it was a gay-friendly church. The gayest friendly church joined with the Catholic Church and put together the Damian Center with the AIDS support group in Indianapolis.

Out of feeling helpless in stopping deaths of friends, they were involved in care either personally or through organizations and churches. They became activist, wanting to take on drug companies and marching in Washington, D.C. They also helped each other deal with loss. The participants describe these varied responses to feeling powerless in fighting a virus killing members of their community.

The Impact on Life: Testing; Sexual Choices, Dating, and Relationships.

Questions were designed to define the impact on life at the time, experiences both internally felt and responded to with behavioral changes. One of the questions posed was whether or not there was ever a feeling that affliction and/or death due to HIV was inevitable. Another question asked participants to talk about their memory of first taking an HIV test. Study participants included men HIV-positive and HIV-negative at the time

81 of the interviews. A common feeling that impacted the gay community early on in the experience of HIV was one of inevitable doom. It was felt that being a gay man would ultimately lead to infection and death. It was a common feeling that everyone would die, even if tests proved negative for the virus.

A younger participant in the study, age 44 at the time interviewed, was living a sexually active life at age 15. He searched out information in 1980 and recalled reading an article that made him think that, “If you are homosexual, you will establish lesions on your body, and I felt that I am going to die. So I checked my body daily for lesions.”

Such experiences were common, at least early on as gay men witnessed others getting sick and dying: “I also thought people were converting like dominos falling, and you know it just—early on it just seemed like a question of time. If you were gay, you were going to die.” The feeling of inevitable death due to AIDS was reflected in a statement describing the purchase of a book put out by the Hemlock Society: “I was terrified that I would be struck and die a terrible death, and I wanted the ability to take my own life to save my family the suffering. The book is still upstairs in my library.” Another participant described a similar reaction: I can be depressive at times. I don‟t take medication for it. I can be blue for periods of time and I remember when I bought a toaster. Well, I don‟t really have to buy a very expensive toaster, because I could be dead in five years.

Sexual acts created increased fears: “I do remember frantically doing the inventory. Was I safe then? Was there any exchange of bodily fluids? I do remember early on, when there were debates, real debates about how AIDS was contracted.”

Though changes in sexual behaviors were described by many, and a few participants took comfort in knowing that early on they had refrained from risky sexual practices, there were fears that earlier behaviors would have lead to infection:

82 I was being safe. But I would always worry about it, if my gums were a little sore.

Because if they are slightly inflamed, or that guy came on my chest, did I…? I‟d make sure I got it all off. In the late „80s or early ‟90s, I can‟t remember exactly, I got hepatitis B. I really thought that was the end of that. I had severely done something that had infected me because if I got hepatitis, then certainly, I got HIV. I thought I was going to die, so I went to Marshall Fields and bought myself this very expensive overcoat. If I am going to die, I am going out in style. And I just got rid of that overcoat just a year ago.

Participants were asked if they recalled the first time they underwent testing for HIV. This question yielded a range of responses. Some men felt a need to know their status early on but only had vague recall of their first test; some had more vivid recall.

These were responses of men who tested negative: I don‟t recall the specifics other that I had it [the HIV test] and that it was such a huge relief.

I remember when Tim and I decided to be tested, which was somewhere around our sixth year of our being together, and we both came up negative. We just broke into tears. We felt we dodged a bullet.

At times, a negative test still left doubts: Oh, certainly there was doubt, because you try and think about what you have done for the last 15 years.

Mostly I believed it was accurate. There was tiny bit of a grain of doubt.

Some memories were more vivid, especially when the test ended up positive.

Then I maybe went a few days later and mine came back positive. And I was like, “Oh wow!” The world just ended, ended, period. It‟s done.

It was still, it was like surreal.

Some participants described a very rational thought process, feeling they had been safe and expected always to test negative: “I wasn‟t engaging in high-risk behavior. I thought to myself, I wasn‟t going to get tested.” It was not unusual that testing was prompted by learning a former boyfriend or a sexual partner had sero-converted. A participant stated he received a call from a recent ex-boyfriend. They had ended their

83 relationship just 1 month earlier. The ex-boyfriend told him that he had just been released from the hospital and had been diagnosed with AIDS. The participated reported his reaction: I totally freaked out. I had never been tested because at that time the whole testing [thing] was something that was controversial. It was January of „88 when he called. I totally freaked out. So I went immediately to the health clinic, the public health clinic, and got tested. And I found out I was negative. I had thought I was going to die. And when she said I was negative, I just about—I couldn‟t believe it.

I was elated. I had been given this extraordinary gift and I got tested again 6 months later just to follow up.

Another thought regarding testing was the idea that early on there was no reason to test as there was no cure, no treatment: I just assumed I was HIV-negative, and if I wasn‟t, until the antiviral medications came along, I thought, “What was I getting tested for anyway?” There is really not a whole hell of a lot that can be done.

One respondent never felt a need to test as he had been in a monogamous relationship since the mid-1970s. He only had blood drawn for the HIV test when taking out insurance policies.

In the earliest years, there was confusion as it was not clear how the virus was actually transmitted, and this impacted sex life. This confusion added to the feelings of fear: I would be careful sometimes and sometimes I wouldn‟t be. I really think that some of the other STDs were more prevalent, because you know since people weren‟t using condoms as much, because there was not, you know previous to that, there was no worry about AIDS. So people just didn‟t use condoms as much.

So, myself or anybody wasn‟t being as careful as we should. You would end up with one of the other STDs and you would go to the doctor and get tested, but then you also got tested for HIV and then you would really worry. And there were times it would really hit you hard because you wouldn‟t find out the results for a couple weeks.

Answers to the question about testing reflected different ways of personally responding to the ever-evolving news reports about HIV. Handling the threat of

84 contracting HIV was managed by different thoughts and actions. Some took reassurance in knowing they had never participated in high-risk behaviors or had made an early choice, due to their preferences, to engage in sexual practices considered less risky. One participant talked about taking the receptive position in anal sex: It was outrageously painful for me. So very early on I said to myself, I am not doing this. That would still be like „76 or „77. When I did start having anal sex again, we were well into the behavior of using condoms all the time. I remember always being concerned for my health. I wasn‟t involved in risky behaviors to the extent that my friends were. And I think that gave me some sense of safety or security.

Participants described taking comfort in the fact that they were in monogamous relationships prior to the epidemic and throughout. Thus their sense of fear was only related to past behaviors and doubts about the incubation time of viral infection.

A few participants described their search for a new, committed relationship when a prior relationship ended. They were motivated by a desire to feel safe by becoming involved in a committed monogamous relationship: Yeah, my focus was on finding a relationship, and I know that when I was in San Antonio, each weekend was a disaster if I didn‟t find a, not a person for sex, but a person for a potential relationship.

For others, the decision was made to reduce their number of sexual contacts or to avoid sex in what they considered high-risk settings. Referring to a desire in the 1980s to visit San Francisco, one participant said, “I had heard of the Mineshaft and all those things, and I wanted to experience them, but because of AIDS, I did not go.”

Feelings of safety were found in various reactions and ideas formulated in the middle of the AIDS epidemic. One place felt safer than another. New York was perceived as more dangerous than Chicago: “Because I said to myself, if I wouldn‟t have the selfcontrol not to participate in all that, and I said to myself that if I did go, I would be dead.”

85 The idea of reducing sexual contacts to cope with fears is reflected in a number of responses, for example, “It certainly made me think about the frequency of my sexual partners. I‟m sure that I was less sexually active because of it.” Avoidance of sexual contacts is also exemplified by a participant who moved from the city to the suburbs: There were times I have said to myself when I have opened my closet, and looked at the shelves, my store room. These guys, my sex toys, have kept me alive because they alleviated the pressure. They eliminated the pressure to potentially put myself at risk, eliminating the urge.

A number of participants talked directly about coming to grips with changing sexual practices. Still, knowing about safe sex did not always imply that it was always practiced: “There were times when I had too many cocktails and I was not doing protected sex.” Participants did admit there were times they were only more or less careful and the risks were serious: In general, my sexual activities were numerous and I more or less thought I was careful, and as a I am now an HIV-positive man and I had thought I was more or less careful and well, look at where it got me.

Participants recalled being familiar with the idea of practicing safe sex, whether or not it was consistently practiced. It had great impact: I did go to some local seminars, and I forget how those started, but they were in people‟s homes and they were designed to be intimate and informal and to talk about it [safe sex] and to get people to practice safe sex. And I knew pretty early on about safe sex, and yet even I had an unsafe sex act as late as early March of ‟85.

My thing was that I just totally retrenched around ‟85, and I‟d say I had the one still unsafe experience—that was in Key West. I was with Bill at the time on vacation. I remember distinctly it was right around that time of the Oscars, so it was winterish, and I had the last unsafe experience.

Making the choice to engage in safe sex was clear for some men, “when it was very apparent that there was something clearly wrong and to know it, and to be clearly

86 responsible and safe, you had to avoid certain things.” Still, responses to implementing safe sex indicated that its practice, was not always effective in allaying fears of infection.

Reactions to fears of contracting HIV ranged from those who committed themselves to safe sex, to those who never engaged in unsafe sex practices for one reason or the other, to those who were in monogamous relationships, and to those who felt they did not want to give up their sexual practices or live in fear. The risks taken could lead to moments of intense fear and sometimes to infection.

Dating practices were impacted as described by the participants. A few participants described periods of active sexual involvements with multiple partners mixed with periods of searching for a boyfriend with whom they would look for monogamy and safety from infection. Some described reducing their sexual contacts, as these two quotes exemplify: I had fewer sexual partners because of it. Certain sexual activities were avoided because of it.

So I never stopped having sex, but I potentially reduced sex with other people by choice where it was easier to pick and choose and be careful.

Despite fears, the responses of men in this study indicate that giving up sex completely was not an option. The idea behind this might be exemplified in this statement: “I will just run the risk, because the thought that I am not going to kiss anybody [pause], then life is really too cruel to be [pause], life is just too cruel.”

HIV status was a factor in dating. A few participants, having tested positive in the early years of the epidemic, made a choice to date only other HIV-positive men as it felt easier. An HIV-negative man, having taken care of a boyfriend till his death, made the choice to date only other HIV-negative men, stating, “I just didn‟t want to date someone

87 who is HIV-positive. There was that whole HIV-positive and negative thing in New York, a political thing. That was a huge thing.”

For another participant, finding out his partner was HIV-positive precipitated a tough choice: I had to come to this decision of, do I end the relationship because of this or do I continue it. I was raised in a Catholic family and learned that you don‟t abandon somebody because of who they are. So if I did that, well, that would be some guilt-complex kicking in probably. I mean in hindsight, if I would have said no, I would have missed nine of the best years of my life because the relationship that I look back at was the best 9 years of my life.

Others feared their past, so even early testing left fears; “So even if you, which most people did, started becoming really very careful, you still had a 10 year history or a 15 year history.”

Chapter Summary Participants readily recalled first exposure to news about HIV and AIDS. Some of these memories were grounded in time and place. Ways in which evidence of HIV hit the senses were evident for all participants. Feelings about how much the impact of loss was felt varied, yet all participants had some powerful memory of the time. Memories of the fear felt in the 1980s, along with confusion, shock, and personal threat to self, whether HIV-positive or not, were a part of the story for almost all the men in this study. A prevalent feeling also was one of feeling powerless as men witnessed illness and deaths within their community. These feelings were often met with action, from taking care of ill friends, to various involvements in volunteer work and political activism. Some volunteered as care-takers, some volunteered in studies, and some worked with community support programs. Finally, this chapter has outlined the impacts on life as it

88 was lived at the time, dealing with the idea and actual event of testing for the virus to dating and relationships.

89

CHAPTER VII

RECALLING THE LOSSES

Participants recalled the history of the AIDS epidemic and talked of its impact, described in the prior chapter, on their lives. The discussion of loss was certainly a part of this historical line of questioning. Due to the nature of the responses participants gave when asked about losses, it was clear that it was necessary to define it as a separate category in relating the historical accounts of the AIDS epidemic. This chapter contains eight separate descriptive properties. These properties are The Range: From ”It Wasn‟t that Bad” to ”Almost Everyone in My Address Book”; I Remember the Night He Passed Away; They Just Disappeared; It Was All Around Me; Names: The Magnitude of Lost Friends; Maybe You Never Get Over It; Battle Stories; and Memorials and Funerals.

The Range: From “It wasn‟t That Bad” to “Almost Everyone in My Address Book” All participants were asked to recall their experience of loss in the early years of AIDS. The responses initially were remarkable for deficit of affect connected to the experiences of the time. There were varied experiences of loss for the 21 participants.

Some felt their personal experiences of loss were less compared to those of many other gay men: I didn‟t experience it like some of those other people did.

90

I did not run in those social circles.

I was less touched by AIDS than some of the people more prominent in the community. I mean I know people who have phone books they have kept where 75% of the people they have known were gone.

For those who felt their experience of loss was less than that of others, there typically was an explanation. These explanations were tied to the social circles they kept or to geographic area, being removed from city centers: In this urban area [Los Angeles], there are different cultures. I‟ve always lived on the west side. In fact, almost always in Santa Monica, and there isn‟t a lot of identifiable gay life here. So, when I would go into West Hollywood, it‟s pretty brutal. I call it the big leagues.

I knew many, many people who had died, I knew [them] as acquaintances, through conferences and meetings, but only two friends. We were busy restoring old houses. We weren‟t out there in the community.

I Remember the Night He Passed Away Though some participants at the early point of remembering loss related feeling less impacted by loss from the epidemic, upon further recollection, their stories reflected more impact than initially reported. This came out in the specific and sometimes detailed memories of one or another friend. The stories were sometimes lengthy, and aspects of them are reported within the subsequent properties. This statement reflects this idea in a succinct, brief statement: I knew people tangentially. As an example, there was a fellow I was dating and his ex-lover was sick and dying and had no one. And you know, I would go to his house and this man was in a hospital bed in the bedroom, in terrible shape. I remember the night he passed away. I remember the night he passed away.

91 They Just Disappeared For all the participants, loss was experienced in some way, whether they felt their experience was less than that of others in their immediate social network or not. Several men described people in their extended network in terms of disappearing. One participant detailed friends disappearing to return to their families of origin, ultimately to die.

Participants stated that when there were friends they were never heard from again, it was assumed they had died: They disappeared, just as families talk about members disappearing in South America. I remember one friend who I lost track of. It got to the point where I was trying to find him. I went through the telephone books from New York City and the suburbs, trying to find him. I made a lot of wrong calls before I found his family. I talked with his mother, and his mother was extremely abrupt on the phone. All she would say was that he had died.

The reference to disappearing for others had different meanings. It referred to the knowledge that friends and acquaintances were ill or maybe had gone home to die: “You would see guys just sort of disappear and maybe hear about them being sick, but if you knew them closer you knew they were sick.� This participant described another aspect watching friends disappear: It was a time people got sick and then they disappeared or you simply lost track of them. And families, it is almost as if they stole their sons away from the community. There was an outrageous amount of shame back then.

It Was All Around Me Even for participants who initially described feeling less impacted by loss of friends, there was an impact from living and working in an urban area populated heavily with gay men. The complications of AIDS were apparent to gay men as they lived in metropolitan areas:

92 The awareness of AIDS was all around me. It was clear from riding the subway and walking the streets. You could see people wasting away. People in your neighborhood who were vital and 6 months later were skin and bones. That was something you could not escape. You saw them everywhere, almost like the walking dead.

In discussion of loss, participants also described their experience of reading the weekly gay newspapers: “It was every week. You would read the obituaries and it would be one, two, or three or four you knew in there. And so it was almost like a war, you know.” Others recalled their experience of going to clubs and then remembering reading obituaries reported in gay community publications: There were so many. When you go would go out to the clubs and dancing, you have lots of, well you recall them, friends, but mostly there were acquaintances.

It‟s people that you see at the clubs and you run into them all the time there dancing or whatever. But you don‟t necessarily call them up to go out to dinner or anything like that or maintain a really close relationship. You know a lot of them by first name. So there were a lot of familiar names that I would be reading about, you know, seeing them in the local gay newspaper, the obituary—and there were a lot of them.

The memory that there were “many,” people that had been at least acquaintances, was often part of the story. This social experience was also related by many participants.

There were acquaintances, faces in the social scene, persons only known by first name, and sometimes fellow employees. “I went to work at Marshall Fields—guys from there are now gone, peers that I worked with.” Another mode of learning about death was to hear in conversation about someone stricken, sometimes at a party: I remember this one party we went to and we were talking about Robert. This guy‟s lover and he had passed a couple months ago. And they [friends] didn‟t even know. And that is another thing. People dropped like flies.

Then there were the descriptions of friends remembered as I asked participants how they were impacted in their circle of friends. Dramatically, one participant recalled that among his outer circle of friendships, he thought maybe 90 men were crossed out of

93 his address book. Within his close circle of friends, he thought that maybe 15 to 20 friends were lost.

The emotional reactions for many participants often changed at the point in which losses were recalled. Still, some seemed to be bereft of feelings as they relayed history.

The intensity of these experiences did come through in all of the descriptions: Well, during those years my partner and I just stopped looking in the newspapers because we didn‟t want to see any more obituaries. There were too many friends that were leaving. We were members of in Chicago of the Chicago Soft-ballers and the Lincoln Park Lagooners. We originally had to disband because we lost so many members who died, and that was a fairly large social group.

The social impact was, yeah, they sort of disappeared, but we sort of had developed our own sort of what I call our gay family and a group of 30 people that we always partied with. Our house became sort of a place where everybody got together. As more and more friends died, there were less and less occasions of going out to various parties.

Names: The Magnitude of Lost Friends The intensity of emotion-laden recollections became more apparent as participants remembered their friends, especially when they recalled the names. Talking about his group of friends from the 1970s and 1980s, a participant had appeared emotionless until he began to talk about which ones had died in the early AIDS epidemic years, “Well, of those guys, John, Jerry.” He trailed off, started to tear up, remaining silent for several minutes, at which point I asked if he was OK; “Yes. Thirteen that were good friends. [He had been counting in his silence.] Sorry, I thought, well, I guess you don‟t ever get over it.” Recalling their names and counting the number of good friends that had died had suddenly and unexpectedly brought him to tears.

The friends remembered by name sometimes evoked vivid descriptions. These descriptions defined a lost friend:

94 They all died horrible deaths. Jameson died, and he had been about 220 pounds.

He had been an Olympic diver and just a big guy, and he ended up weighing less than 100 pounds when he died. This guy Richard was a weight lifter and was just a pencil when he died. He died the most horrible death. He was covered from top to bottom with Kaposi‟s.

He had suffered horribly and had a terrible, terrible death. This one friend, Steve, died. He was a good friend. He wasn‟t one of my closest friends. There is a reason I am getting to this. I am the only one left alive in this group.

This one person, Ray, he came into our lives and moved in with us. He was ill, I remember. I would lay on top of him, but putting lie a sheet in between us. This was not a sexual thing, but he was diagnosed and having a bad reaction to this drug called Bactrim. And time basically weakened him to the point of deteriorating.

The names of friends and the personal meanings of the loss were very apparent.

This statement reflects the meaning of a stricken friend: Every year we took a group of people and went [someplace] for a week. I remember that trip, and Mike told me he was sick and it basically wrecked my whole trip. I mean it was devastating to me. So, Mike was the first person, really close friend, that was infected.

Participants reported stories of friends that withdrew socially or threw their friends out of their lives. One participant described his discovery of an old friend‟s death when he saw a donation made in the memory of this friend. Another tale was that of losing contact with a boyfriend and then, “[I] find out 10 years later he was gone.” These friends were remembered as “a sweet, sweet man,” or as “one of those great loves of my life.” A follow-up point made to this last comment provided the participant‟s own context to his memory: “I think one of the messages here is that in spite of war, if you will, that people were still falling in love. There were romantic relationships in spite of everything else.” As illness and death were a part of life, life, romance continued.

Men‟s names were recalled whether they had been close friends or known in another capacity. Personal losses extended beyond friendships:

95 I was Bob‟s spiritual director for the last three years of his life and was with him when he died. He was only the first of several men I was with to the end. The other one that really stands out for me is probably one of the most famous Jesuits who died. He was a very close friend of mine. Tim was the primary interviewer, managing my candidacy to the Jesuits…. That remains a very significant loss for me personally and for a lot of people.

Maybe You Never Get Over It Remembering that 13 good friends, friends from a photo on his table, were gone, tears flowed, and were accompanied with, “Sorry, I thought [pause]. I guess you don‟t ever get over it”. That last statement may have been one of the most profound. As most participants willingly, even enthusiastically volunteered for and engaged in these interviews, it became apparent that emotion was not completely forgotten. Some remained detached in descriptions. Others participants clearly felt strong emotions at the point in which they recalled the loss of a friends or the number of friends lost. Some men in the study experienced greater losses in their social world than others. All witnessed the ravages of AIDS. When asked about memories, many men noted that they often think of a past partner‟s death and maybe occasionally a friend, but generally it was during the interview that they were first asked to recall memories in any form of organized narrative. One participant stated that much of what happened in this part of life was denied. Another, in reference to deaths experienced in his social world stated, “I think about it a fair amount. It has remained a touchstone for me, especially because of the work I have tried to do in the non-for-profit sector over the last 10 years.”

96 Battle Stories Descriptive stories were reported as participants talked of their personal losses.

One participant talked about caring for his good friend, John: The last 6 months of his life we moved lock, stock, and barrel. We kept our place, but we moved enough clothes and so forth that we stayed in his guest bedroom and cared for him for the last 6 months of his life. And that was the most difficult thing that I had ever gone through, watching him suffer, trying to care for him.

Memories were vividly related. No one in the study lacked a story of loss.

Memories were burned into the brain whether participants felt relatively unscathed or whether they clearly recalled this part of life as a touchstone: I remember when the paramedics came. They had zipped him into a black body bag. And they basically were using a hand truck. The body bag was on a hand truck. And he had grey hair, and I remember some of the grey hair sticking out from where they had zipped the bag. And that was probably the closest I was ever touched. Which, on one hand, is burned in my brain, but compared to a lot of people, I relatively escaped unscathed.

Acquaintances, friends, and life partners were all described in these battle stories.

Some of the most vivid recollections were descriptions of partner loss. Personal loss was felt as victimizing: “People died on me, and they did it because of AIDS and it wasn‟t their fault, but then again.” Experiences were remembered for the demands made as well as for the care received from other gay men: He was diagnosed with lymphoma in January, 1996, and then he passed away in June. There were a lot of issues there, trying to decide when do you stop medical treatment…. It was really a demanding time, but when I look back, it was one of the most rewarding 6 months in our relationship because we were able to get even closer and our friends all came from the back to meet our needs and the work.

There were people from my partner‟s past surface when they were needed. He got very sick. There was an ice storm a weekend in November and he got very ill on Saturday and his temperature spiked to a 105o. We were trying to reach his doctor in New York. It was scary. He was very sick. We drove back to New York on Sunday because he was trying to see the doctor. He had been sick, but it was just so shocking for both of us. You get used to anything. It may be rough for a few days and you get a hold and keep going. And it sort of changed to he was going to

97 die. What was strange for me, I took the next day off of work just to get him settled into the hospital. Then I went in the next day to work and I got laid off from my job. It was strange. So anyway, so he did die about 3 weeks from that point and there was just a lot to do.

A participant had described how his employer accommodated to the needs he encountered caring for his ill partner. Still, he noted how the battle with he and his partner with AIDS took a toll on carrying on with life: They gave me a flexible schedule and they kept me on seniority. They kept me on the insurance policy and allowed me to work the schedules I needed. So there was spending many days at the hospital, sometimes sleeping over night there. And many nights I would get into the car and just drive and say, “I want to drive into oblivion.” You know, it was pretty intense.

The themes of handling life and life just going on came through as men described caring for partners during their periods of failing health: And we made a decision that we would continue to live our normal lives as much as possible and not let the disease be controlling things in our lives. And for the most part, we were able to do this until the lymphoma came up and then chemotherapy, that whole entourage of stuff, 6 months, really 6 months of intense interaction.

Memorials and Funerals With the number of deaths within social networks, clearly there were funerals and memorials, but little was recalled about these, especially in comparison to the stories recall of illness leading up to death. It was noted more than once that sometimes funerals were not available: “Unfortunately there were very few funerals that I attended because most of my friends disappeared.” In asking about funerals, again this idea of availability came up: Oh yeah [I went to funerals] when they were available. Some of these friends, well, the family, whatever, I don‟t know if they were estranged or they didn‟t want anyone to be contacted. Some you did not have closure with; you would just read the announcement.

98 Others participants remembered families abandoning their sons at the point of illness or death, leaving it up to the friends to arrange memorials: At his funeral the partnerâ€&#x;s family was there, but nobody from his own family.

The mother was horrible in the end, in the way she treated him. She wouldnâ€&#x;t go near him. Then they named a room after him in the gay community center in the village. When she was notified, she threatened to sue the partner because she didnâ€&#x;t want people to know he was gay.

The first interviews brought forward a story of an epidemic hitting urban gay communities. This story ranged from describing the first reports of illness and deaths from what was later known as AIDS, to describing life changes during the early epidemic years, to describing the walking dead on the streets, to the deaths, obituaries, and loss of friends and lovers. The stories were not all the same, but there were memorable experiences and personal life changes. The story of the AIDS epidemic is defined in various manners, but none more tragic than the experiences of losses outlined in this chapter. Most of the men in this study had at least one memory they wanted to talk about in detail. Friends, partners, and acquaintances were remembered by name. For some, there were opportunities to mourn at services sometimes occurring in the absence of family. For others there were not opportunities to grieve at services as friends had disappeared, leaving questions and assumptions about their absence.

99

CHAPTER VIII

I CANT BELIEVE THAT I FORGOT THIS!

This chapter begins with reporting the results of the second interviews. These interviews were planned as a part of the study, a choice in the methodology designed to allow for adequate time to cover all of the interview questions. The methodology provided more than just adequate time to ask all the questions. The results showed that participants emotionally reacted between interviews. As well, additional memories of lost friends and of friends who disappeared were recalled. This chapter is broken down into three properties: I was Surprised at What I Felt, Additional Memories, and Emotional Reaction to the Interview.

I Was Surprised at What I Felt The first question posed to participants in the second interview was a solicitation to comment on their experience of the first interview. Responses generally fell into three categories: It Was Fine, It Was Fine, but I Did Recall More, and I Was Surprised at What I Felt.

Several men stated they had no emotional response and that nothing further came to mind after the initial interview: “It was about what I expected.” Elaborating on this idea, one participant noted, “I can‟t find the word for it, but detached is kind of how I felt

100 looking back at the time as something that happened to me awhile ago, and I just feel emotionally detached from all of that.” Another respondent stated that he had no emotional response but commented that after he had gone through the first interview, he began, “thinking about a lot of those things we did talk about. I realized I had not actually either thought it about much or put it together in a discussion like that.”

In contrast to these comments, the majority of men quickly came forth with comments reflecting the emotional impact that followed the first interviews: I was surprised I got teary.

I was struck by how much emotion was there for me, and sadness, some confusion around that which had been all encompassing.

I had tears very close to the surface. I wasn‟t sure if they were tears of missing these people or if they were tears for how lucky I was not to expire.

There was a wealth of emotion, sadness, grief, but there was also a more subtle feeling, a sense of amazement and gratitude.

Since that time [the first interview] you have been in my mind every so often, because certainly more than ever before—because it comes back to me, you know. I will flash on something or I will pick up on somebody, maybe someone we talked about or whatever. It just stayed with me. I‟ll be back at that interview again three or four times a week.

Several men noted in their first response that the interview was the first time they had thought about this past period: It brought up the past a little bit, well actually, a lot. I had not thought back about that time specifically for a while. So it put some of the present challenges in terms of work into perspective, because they are not really challenges in a larger sense, I guess. I had not thought back on that time period in a focused way in a long time.

Oh yeah, it turns out that this part of my history I had not thought about in a long time. Talking to you is probably the first time I talked about it collectively. One of those things that come to mind pretty clearly for me is I feel I am shell-shocked as a result of it. That post-traumatic stress—seriously, shell-shocked is really the word that describes me better than post-traumatic stress.

101 When asked the question, “What was it like to remember?” one participant stated, “I think about [long pause]. I think about it.” I followed up with this question, “Given your long pause, is it still an emotional experience to think about it?” Again, there was a pause, followed by, “Yes, very.” This was a phone interview, lacking the advantage of the face-to-face interaction. It did not allow me the advantage of interpreting affect and body response, but the pauses felt filled with heavy, intense emotion.

In commenting on his emotional reaction in the first interview, another respondent noted that he expected to have some emotions talking specifically about his partner‟s death. But he noted surprise at his experience: The thing that surprises me about the whole thing is that how sometimes there is something that you don‟t think will remind you of loss or of the sadness that lingers. But I knew going into the interview that it would provoke a lot. In one way it was surprising, and in another way it was interesting in the way certain topics provoked emotions.

When asked about their reactions to the first interviews, a few men noted that they were fine and that nothing new really came up, but then proceeded without further questioning to describe memories from that time period. One of these men related having joined the Gay Men‟s Chorus in 1992: “I wanted to be around people I could socialize with. I had lost so many friends, as I told you last time, acquaintances and friends.” Then he related that as part of the chorus, he would participate in singing at memorial services in which the chorus had been invited to perform: I did go to almost all of them, and it was this sort of weird release for me that I had been able to mourn my friends that I lost but had not been able to attend their services, and there were many. I had my own quiet period for my friends, but you know what, I will sing for them.

102 Additional Memories Come to Mind I was surprised I got teary. I didn‟t think I would. And then it got me reflecting and I thought of John, not that we knew him as well, but I do just remember a couple of other people who also died.

Participants did recall additional friends lost due to AIDS. As one participant noted, after the first interview he remembered, “more about the people, and I would like it to stay there.” He stated that memories of men lost to AIDS had returned, and he felt that these were memories not to be lost again: I think it honors the people who are gone. And it honors the enormity of the disease. I hadn‟t realized how much I had willed the whole thing out of my head, like thank God we are through with that. But I really had, or it wouldn‟t have been so vivid coming back like this.

Additional memories had come into consciousness between the interviews for quite a number of participants. They readily reported these memories in the second interviews, and often with what felt like a real importance to get these additional memories into the record. One participant introduced an additional memory with the statement, “I can‟t believe I forgot this.” “Forgotten” memories were recalled and described with details defining who a particular person was in their life: Anthony, who I met while I was working there [this was a reference to a city he had previously resided in], and then there was Daren who died of AIDS and at work there was this guy Edward, who I had an affair with.

Another one, Michael from New York, was someone I met in ‟83 or ‟84. We developed a long-term distance sort of romantic interest. He came to visit me in the fall of 1987 and we had an extremely romantic weekend…. And suddenly I got a massive, outrageous headache that came out of nowhere. It brought everything to a stop. A month later, Michael was diagnosed with pneumocystis.

He had no idea that he was HIV-positive.

Memories? Yeah, two in particular—no, three. Unfortunately I forgot their names.

One was Michael from Michigan. Michael and I were close friends. He called me to tell me that he was blinded by CMV virus. And we had a long phone conversation. I remember chastened by my dad because I was on the phone for so

103 long. I couldn‟t tell my parents what was going on. I could not tell my parents that this is what was killing Michael.

Other events I thought about since? I think it is mainly that these people are just with me, my friend Doug besides Mark, and people I worked with. And I think oh my God, if I knew all these guys? You just don‟t know.

Another respondent recalled talking to an old friend from another city by phone.

He described him as, A small blond guy. He called me from his hospital room and in between his calling me and the nurse coming in to do something, we got off the phone. And I called him back about an hour later. And he was gone. Jerry was his name. He loved classical music.

For several participants, the first interview allowed them to talk about the loss of their partners. These had been quickly recalled and were very vivid memories. When asked about additional memories since the first interview, one of these men noted, “I think about Tim, who was my partner who died, frequently, but I had not, in going back, thought about the other people I knew or worked with who have gone.” These memories were brought back following the first interview.

It was apparent that for many men there were additional memories of specific friends and of the experiences surrounding their illnesses or death. These memories were not initially remembered. They were recalled between the interviews. For these men, along with the memories of close friends, it was an important to remember others who had died: I had not thought about them [men who died] for awhile, and I don‟t want to forget about anybody. I actually have a box of pictures and even the obituaries that were printed, because they did print obituaries. They did back in the ‟70s,‟80s, and early‟90s because so many people were passing away from HIV and AIDS. For awhile, I would cut them out and put them in a box. Sometimes they were just acquaintances, not really men I knew well. Those I might tend to forget.

104 The Interview: Emotional Reactions The interviews began with an inquiry about the lives of these gay men in midlife.

This inquiry was followed with a request for participants to recall the beginnings of the AIDS epidemic, its unfolding, its impact on life at the time, and the losses. Then, given a break, a second interview began by asking participants to comment on their reactions between interviews. In addition, it became clear that the interviews for many participants brought forth additional recall, memories initially forgotten but recalled between the interviews. A process unfolded in which the interview itself was recognized as having an impact and thus required inquiry. Prior to ending the interviews, I asked participants to comment on their experience, including their feelings about the interviews. This section describes reaction to this inquiry.

Comments were made by several participants that indicated it was common not to have thought about the experience of the AIDS epidemic in the 1980s and early 1990s. I was asking them to recall in a structured interview. Prior to the interviews, only in occasional moments did participants remember or think about the early AIDS epidemic years: Periodically, something may come up which makes me think about a particular event which may make me think about people in my life I was close to.

You know, it is kind of weird. I hadnâ€&#x;t even thought about it until recently when I answered your ad.

Another participant commented that following the interview, social conversation about that time period had prompted him to recall additional memories.

As to how it felt to be asked to remember, participants stated that it felt good to remember. No one expressed regret in participating. There was one participant who did

105 not respond to calls to schedule his second interview. The feelings of some participants were obvious in the first interview. For others, the connection to these feelings came between interviews and surprised the participants. It felt sad to remember, and sometimes anger came up: I still have deep feelings for each of these men, even though years, so many years [have passed] since they died.

I still get mad. I still get angry. It is empowering. As sad as it is that the pandemic has continued to grow, they were heady days, if you will, in a sense, even though there was little you could do to alleviate pain.

I am just sad about the loss of talent and a lot of beautiful guys.

There is a sadness that is always there, a movie triggers it, that I haven‟t seen in 20 years. It will remind me of a moment we had, or a song—music is just so important—and I will just start crying.

I felt sadness, guilt at forgetting this. I felt impacted that I left it behind.

Participants acknowledged that outside the experience of this interview, feelings associated with this past were spontaneously felt in reaction to conversation with friends, or as a result of watching a movie related to this time period. But until this interview, none of the men had such an opportunity to organize their recollections into a historical narrative. The feelings of sadness and anger were realized. And for some, the realization that they had left the memories of lost friends behind brought up shame. Participants stated that now that they had begun remembering, it was important to keep doing so: It‟s a very complex emotional period and for me. I think one of the more difficult parts is knowing that I have to anticipate that any time, unknowingly, emotions can get provoked, and it can‟t be anticipated because you don‟t know exactly what it‟s going to be, but it becomes part of things. This is now a part of life and as it comes, I accept it and let it pass.

106

CHAPTER IX

THE YEARS SINCE 1995

This chapter is defined by the lack of data obtained describing the years since 1995. It was not easy to solicit commentary on life between 1995 and the present. The properties that are defined below are As It Slowed Down, You Just Didn‟t Think about It; Yes Things Were Changing (since 1995), but It Was Never Over; I Have Remembered It Through the Years; and There Were Problems along the Way.

As It Slowed Down, You Just Didn‟t Think of It Participants recalled the advent of protease inhibitors as the standard protocol for treatment of HIV infection. Protease inhibitors restored health to persons who were infected with HIV and were very ill. These were the persons who were living with AIDS. Newer treatments continue to hold progression of the virus at bay. Once again immune systems were back at work fighting the opportunistic infections that ravaged the bodies of infected persons. The impact on lives was dramatic: I was living in Andersonville and the guy who lived next door was on disability.

He comes and knocks on my door one day and he says, “Well, they found all of this and this and this, and it looks like we‟re going to live.” I said, “What are you talking about?” And he said, “I‟ve run up my credit cards. I have 50,000 dollars in credit card bills and I figured that I had maybe a year left to live, and now the doctor tells me we are going to treat this as a chronic illness as opposed to a

107 terminal illness.” I thought that was so funny, because so many people had done that and they sold their life insurance and had done all of these crazy things to get money so they could enjoy the last years of their lives. And they found that they had to go back to work and they hadn‟t saved for retirement.

A number of participants did comment that since 1995, they just did not think much about the preceding years. One of these men noted that prior to 1995, he had already moved from New York to a much smaller city, a city with only one gay bar.

Though he moved for a job, he noted upon reflection, I had moved and left it all behind. I didn‟t move to do that. It just happened that way. I was no longer cruising on the street. I wasn‟t seeing people with that telltale cheek thing, that hollow and sunken look.

For many of these men, their focus in life turned to their work and friendships.

Some of these men made major changes in their life in the last 14 years. One participant pursued a graduate degree in Great Britain, taking a leave from his long-time employment. Two men retired to new activities such as writing. Two men made major geographic moves. One of these men moved to a rural area, fulfilling a dream to live a simpler life. Another left Chicago and a nine-to-five job in order to be in a completely different area of the country with friends and pursue an earlier ambition to engage his artistic talents. The trend to leave the epidemic behind was acted out in new pursuits and significant relationships: “Part of it [the emotions of the last 15 years] has gone into kind of an intensified and consistent commitment to my partner, and being a good enough dad, and a professor.”

Participants did describe carrying on in a survival mode: “I think a lot of my behavior over the years has been survival mode, thinking more immediate than long term.” This seemed to be the idea noted in descriptions of life since 1995. The reasons why might be summed up in this response: “People were too traumatized and were

108 getting back to business as usual or simply surviving.” The feeling of being a survivor was noted by several participants. One of the men noted that in 1999 he was sitting at a dinner party with friends, gay men all of the same age, and they commented to each other that they realized they felt like survivors of something: “There was a sense of survivorship within the community and also within my circle of friends.” Another participant noted that life went on after 1995 and he felt that he had been reasonably successful professionally but that, “There was a survivor‟s guilt. I was ridiculously sexually active when I was younger. The fact that I escaped is extraordinary, and I always felt I should give back.”

Yes Things Were Changing (after 1995), but It Was Never Over Several men noted the feeling that for them the struggle with AIDS never felt over. When I asked one participant if he ever felt the epidemic was over, he responded, “That is an interesting question, one I am not sure I have an answer for. I can say in my personal life, yes, more or less. And yet there are one or two slipping through.” These men pointed to different experiences that were behind this feeling. For a couple of these men, there were still friends dying after 1995, or they had HIV-positive friends: “I have a buddy who has been positive since 1985.” One noted that his partner died in 1995, though he was himself able to start on a protocol of protease inhibitors unavailable to his partner and to several friends who have died since 1995. However, his body became resistant to protease inhibitors, so he still feels vulnerable to the complications that can be caused by HIV, though for the most part he has enjoyed good health. He stated, “I limit the amount of time I spend in a hospital, for I know that is just the best place in the world

109 to get sick.” There were comments by other HIV-positive men recognizing that being HIV-positive perpetuated the feeling that the epidemic was never really over. One participant remained vigilant in tracking news of HIV and AIDS online throughout the last 14 years up until today. Following his initial interview, he e-mailed me an article regarding HIV. His vigilance was not just in following HIV news but in protecting himself from infection by making considerate choices in regard to his sexual behaviors.

The recognition that infection is still possible came up for other single, sexually active men: “Actually, I don‟t think it is still over. I am very careful with my sexual partners in what we do. So that has still affected me. I still think I can be infected.” The idea also came up that having lived through this history keeps alive a fear of HIV infection that is nonexistent in gay men in their twenties.

I Have Remembered It through the Years “I think about it a fair amount.” That was a response to the inquiry about how often in the last 15 years participants remembered the early AIDS-epidemic years.

Memories were not completely left behind. This same participant continued, stating that, “It has remained a touchstone for me.” This participant was not alone in his daily recall.

Another noted, “You know, I don‟t think that a day passes that I don‟t think back.” A few participants noted that they grabbed the opportunity to view the AIDS quilt on a couple occasions in the last 14 years. It helped them remember, but it also felt like a way to pay respect to the men lost. Thinking about the friends lost was a common experience for participants in the years since 1995: “I feel their spirits. And I think they are trying to

110 communicate with me, because I believe that they are people we love and care for. They are always a part of me.”

Recall of events also came to mind when sparked by something or someone familiar. Sometimes conversations with friends brought memories forward: I‟ll run into somebody that I haven‟t seen in years and we will get caught up and then talk about, “Oh yeah, so and so died in 1996 and so and so passed away in 1989.” But otherwise, I put it away. Yeah, but [I have] not forgotten it, because you think of those people, of what your life would be like had they all lived.

A participant noted that he had run into a boyfriend from the early epidemic years: “Every blue moon I have seen him. I have seen him every now and then. And so I remember going back to the place we were tested and talking to counselors and everything.” For another, running into an ex-boyfriend provoked the following recollection: I remember a guy that I dated. I saw him at Market Days. It had turned out he was not only cheating on me but was actually a male prostitute. So that relationship ended. He was negative at the time. And I saw him at Market Days. I almost didn‟t recognize him. He was limping. He could barely walk. And this was only 4 or 5 years ago. And the drugs were already out and you didn‟t see people like this as much. That was like 20 years ago when you saw people that were half dead.

And that really hit home.

But these kinds of conversations and meetings tended to occur less frequently as the years passed: “For the last 10 years nothing has really happened to make it specifically come up in conversation much anymore.”

There Have Been Problems since 1995 “I allowed myself to experiment when I went to England.” This was how one participant introduced his history of drug abuse leading to treatment. Other participants noted a history of emotional problems. It was not all just left behind. One commented on

111 several years of difficult depression before grabbing hold of life and making a decision to live and follow his prior dream of moving to and living somewhere other than in an urban area: There were periods of time where I basically was ready to throw in the towel. I was tired of being alone. If I knew offing myself wouldn‟t hurt, I would have done it, but I am a coward. I have ups and downs, mostly ups. Over the years I have learned to keep it more up than down.

Another emotional reaction was a paranoid feeling: “After he died, I was walking down Michigan Avenue and I suddenly thought I was being followed. I didn‟t know by whom, but I was being followed and I developed this incredible anxiety complex.” This participant ended up being admitted for inpatient care with a diagnosis of a posttraumatic reaction. He had taken care of a friend at the end of the epidemic, and though up to that point he felt that he had kept himself feeling emotionally strong, he was hit with this feeling of being followed and then felt depleted. Two other participants volunteered that they had been in some psychotherapy and/or had been prescribed antidepressants over the last 14 years. The experience of the epidemic was metaphorically likened to going through a war, as they watched friends go through horrible deaths. For one participant, the experience was described and remembered by its emotional toll: I was fine going through it. I could keep it up, and I could do it, and the more I did, the busier I was, the less I would ever worry about myself or anything else.

My concern was about the people I was around, and I wanted to make sure that they were getting whatever they needed. And then it stopped and it stopped abruptly, because the last of these people died, my lover. And it was like there was nothing inside me. I couldn‟t sleep. I couldn‟t go to work. They put me on all sorts of medications. I took 6 months off.

Not everyone could just leave it behind. Participants did experience psychiatric symptoms over the last 15 years. For those that felt like they had been through trauma, it

112 was not uncommon to want to forget. As one participant put it, forgetting was “sort of like armor.”

Handling the experiences of loss and its aftermath created a quandary. It was noted that “when you are going through it, you don‟t think about it.” There was no script, no manual telling men how to handle these early losses. Sometimes putting it all aside was felt to be the only option. One of the men talked of his quandary over what to do with a photograph of the quilt made for his partner that was to be added to this bigger than life memorial: I took it upstairs and thought I will deal with it later. It was the same thing when I came home with Bill‟s ashes. This is not something that fits your everyday experience. When I got home, the mantle seemed too prominent. So I had to go to work. I put it upstairs on the bed where he died and left thinking, I will think about it later.

113

CHAPTER X

DESCRIBING THE IMPACT ON CURRENT LIFE

This chapter provides a description the last category derived from data analysis. It describes participantsâ€&#x; current life perspective. All interviews concluded with questions posed to participants about any impact perceived or felt in their life. These questions elicited comments about practical life impacts and philosophical views on life. The chapter is broken down into the following sections: Psychological Impact on Current Life, Volunteering and Political Activism, Commentary on the Younger Generation of Gay Men, Thoughts on Mortality, and Thoughts on Spirituality. The chapter concludes with Commentary on the Interviews. Several men volunteered comments on their experience of the interview, and these comments are included here as part of the current experience of life.

Psychological Impact on Current Life I think I had to come to a sense of balance between respecting, honoring, and memorializing, and not negating or forgetting, but yet not trying to make it prominent. What do you do with this whole HIV and AIDS experience and loss, and stuff when it is an everyday experience that you run into and it reminds you?

114 Participants did feel that something very significant had happened in the history of their life. Their participation in the study was often a result of this feeling and a desire to say something about it: I think I also had survived at some point. I wanted to remember and to be sure to tell you about living through this horrible period.

It‟s interesting because you have that realization your life is punctuated by something historical that you went through.

It‟s history. And that is kind of sad to say, in many ways, that life has to go on, and unfortunately without a lot of our friends and acquaintances and bosses and loved ones and what not.

It is always there for everyone to look at, but nobody looks. So I would say that, definitely, it colors my world view.

Thus participants‟ experiences of the early AIDS years were noted as history, as the past, but they recognized that they had grown and learned because of this history.

More than once participants noted that they view life differently now. They often put a positive slant on having lived through the AIDS epidemic: There is something larger than ourselves.

I‟ve learned from it, grown from it, and am alive because of it. But it is not something I dwell on.

Yeah, it affects perspective on life, and you start realizing how precious life is, and with the time you have try to do what you can and not put things off in life, you know, just caring about other people more. Because you see so many people go, and you wish that you would have spent more time with them, told them things.

I also think that people have gone through all of this and become strong. I think you look at things in different ways. Maybe you are willing to take more chances.

I have always been relatively positive, but now the glass is always half full. I mean, there is never a time when it‟s empty, even in this terrible recession.

A few participants expressed feeling grateful for the experiences brought about by the AIDS epidemic:

115 You know, I don‟t think it is possible not to affect you. But I guess in a way, it made me, I don‟t know, I hesitate to say it. I have some sense of it making me more appreciative of my life, and of living.

What a fucking privilege to have been a witness and participant, part of the pit crew of family members and partners and friends of men who lived and died of AIDS. Other positive aspects of the epidemic came out. One participant described his continued vigilance in tracking news of the AIDs and treatment, observing that, “I chose not to have blinders on. I read a lot. I am on the internet constantly.” Philosophical statements about approach to life also came out: The thing I like about getting older is how certain things that used to be difficult are not difficult anymore. Because of experiences, you know the difference between what is a little step and the big steps.

I never understood some of the power of the images in the Book of Revelation, the images of those who washed their robes in blood, until I thought about the last scene in Longtime Companion, when everyone comes back, the extraordinary sense of reunion. I realized the book was written when people were losing loved ones.

There were also practical implications for life: I should feel guilty as opposed to how I feel. It is interesting I don‟t have a conscious sense of how it has affected me other than in very personal and individual ways, except of course that I have safe sex and that is not trivial.

You know, to this day I am tracking the alumni magazine and looking for people who were in my class, particularly men who were in classes who died without any spouse or children, and I think to myself. I always read the obituaries.

Men in the study noted that life just keeps going on, but not without some repercussions. One likened his experience, and what he felt were the experiences of others, to the character played by Gregory Peck in the movie The Man in the Gray Flannel Suit. He described the character, a veteran of World War II, as living a nine-tofive work-day life, living in a pleasant suburban world. Meanwhile, the character experiences “these flashbacks that are incredibly intense, these war experiences he had. It

116 is sort of not disconnected, but so incredibly disjointed.” This comment acknowledges the sense of something historical. All participants clearly felt that something had happened in their lives and that it had impacted them. This came across as implication in the data, and it was clearly stated: The fact that I escaped the AIDS crisis, that is a thing that is never far from my mind, that I am alive and that I am alive and negative. Fifteen years ago, I never thought that I would be. The sword of Damocles hung over everyone‟s head.

One participant stated that he did not think gay men had been talking about the epidemic years: “The age group I am in all lost someone, but no one talks about it in public.” As to what gay men in midlife reported doing with this part of their past, the analogy to World War II came up again: I do analogize it to my father‟s experience in the Second World War. There are not often venues where the stories can be told. I am convinced that the VFW, those clubhouses and bars that came into being after World War II, were largely about providing space and the social lubricant for people to tell their stories. And there have not been many places [for survivors of the AIDS epidemic] where that can happen.

Participants recalled specific experiences or people lost in describing the impact.

One participant noted that he learned from his deceased partner how to go after whatever it is that you want in life: “I always respected Tim. He always went after stuff. He did everything he wanted to do. That is an important thing to pursue things that you really want.” Another participant recalled an early experience of taking a friend to an emergency room in the early 1980s in New York City. He felt that he was in a thirdworld emergency room: “I have never looked at America the same way.” There was also a thought about what the loss of lives implied in general: There is a nuance that comes out and that has to do with the intellectual capital lost. Michael from New York and Tom [last name withheld] were two bright minds, outrageously bright minds. I don‟t mean to say lesser minds are not of

117 equal value but simply I am thinking about what we as a society have lost, not just as a community but the larger culture, what we have lost by virtue of their deaths.

And now some of that culture that was in the ‟70s is gone and I do mourn. I mean it is a piece of gay history that I missed specifically because of AIDS. It is gone and I just sort of feel bereft.

Priorities in life were mentioned in discussing the impact of the AIDS epidemic.

In examining his own focus on career, and his friend‟s focus on owning a convertible, one participant commented that all these sort of priorities were called into question: I feel I am comfortable and to a large degree, satisfied, particularly having gone through a bumpy career. A friend wanted his obituary in the New York Times. I can see that as attractive, but you are gone. It doesn‟t really matter. Who cares? It is over by then. I don‟t know if that is triggered by that [the experience of the epidemic] or if that is just a fact of getting older.

As noted previously, friends were recognized as an important priority in life.

Some participants did state that valuing friends now was related to loss of friends during the epidemic: I would have so many friends you know. I would just have this whole slew of people. In Chicago we have a supportive community, and we have all turned inward and helped each other.

And a lot of losses, you are aware of this meaning in your life, the absence because you‟ll think about what would have been all the friends that you have left.

It is a sense of commitment to, and connection to people who are regarded as contaminated or taboo.

Friends were lost and new friends were found, at times through participation in new groups or activities, and sometimes after moving to a new area. Friends, whether old or new, were more than important; they were integral to moving forward: I and my partner thought our friends were our family. We bonded with them and did things with them. That shifted after Bill‟s death. Then I had to see myself as an individual again, having to rely on my friends for things in which I had previously relied on Bill.

118 New friendships were made, but old friends were not forgotten or ever really replaced: This replacement of a close circle of friends, the ones I thought would be around me, and then the ones that are, it is not the same. We are close, but I think as you get older, I don‟t think you form the close bonds you do when you are young.

My newer friends, I don‟t think I know all their individual stories. As you get older, you don‟t have that closeness you had when you were young where you share everything.

These men also talked about the impact of the AIDS epidemic on their identification with their community of gay men. Participants felt that the epidemic had positive impact for the gay community: I think it was great being in a time and place in what I experienced was a deepening sense of bond and commitment in the gay community. I am fairly convinced that the activism here in Massachusetts that resulted in the same-sex marriage equality movement really was birthed in, shall we call it the AIDS movement.

I think one of the results of the AIDS epidemic is that we started focusing on other issues that we have as gay people.

I have my own beliefs as to the origin of the virus—that it was left to run amuck because the people succumbing to it were druggies and homosexuals. So they could do with fewer of us anyway. For a lot of the gay community there was a large amount of empowerment.

Other men discussed the reaction of the community at large in relation to the gay community: “AIDS in my opinion sort of set the community back probably 15 to 20 years, and then all of a sudden it gave those people who wanted to not like us another reason to not like us.” Along with these thoughts were the affirmations of being gay: Reverend Jesse Jackson once said, “God doesn‟t make junk,” and I believed him, and I still do.

I remember thinking, gosh darn it, God doesn‟t make junk.

Participants described feeling pride in how people in gay communities responded to the needs of stricken gay men:

119 When people talk of gay guys being hedonistic, I contrast it to the former wife of a gay man. She remarried and she got breast cancer and her second husband said, “I am out of here.” Contrast that with guys who have no formal or legal commitment to each other. But they didn‟t leave. They became the nurses and caretakers through the ravages of this disease. I have been there, at the bedsides of so many men that died and their partners were there.

Participants felt they had survived something. They acknowledged that there was a personal and community impact, accompanied with feeling lucky as a survivor: I keep saying to God, “God, I am grateful. And I thank you for allowing me to be here.” And I hear God saying to me, “It is OK, alright.” Now there are things I need to do and it is going to empower me.

For whatever reason you [God] have given me grace to continue to be here and I am grateful and thankful to be here.

I think I was also smart, but I think that no matter how smart you are, luck still plays a bit role.

Yeah, I think about how fortunate I was, again to have my partner, that we were in a committed relationship early enough, quickly enough, earlier on, that I was just lucky.

Remember Gloria Gaynor, “I Will Survive”? At that point in my life, that was such an anthem. We didn‟t have iPods then, but if we did, that would have played 24 hours a day.

Volunteering and Political Activism Over and over study participants discussed their feelings about political activism and described acts of political activism and volunteerism. These traits in current life were felt to be related to the experience of the AIDS epidemic, sometimes in conjunction with family values and religious beliefs: I am not specifically giving back to my community, but act on the feeling to give back, the feeling of the need to give back that was entirely related to being a survivor of the AIDS crisis.

120 For while I looked at what I could do to give back and at what was in the realm of what I could handle. Now I am doing three different volunteer activities. I started [a social group for gay men]. I also donate to charities.

Oh, lord. I was involved in the HRC [Human Rights Campaign] for 9 years. I served on the Board of Governors for 4 years. I was involved in the Center on Halstead. I‟ve done a lot.

I guess I feel like by helping, I help myself, and I feel stronger.

The epidemic also took a toll on the ability to actively volunteer for men in this group: I continued for a few years with the AIDS Walk and with Chicago House. I helped get some contributions to Center on Halstead. I did make some donations.

It became more of a donation thing rather than a physical involvement, and I think that was sort of a safeguard. It was safer emotionally to just send money.

Beyond the inclination to volunteer, these men described political feelings and inclinations toward political activism: I am belligerent in my political views. AIDS represents a lifetime annuity to the drug companies. I am firmly of the opinion that research to eradicate AIDS is bullshit.

I am very politically aware, especially with what is going on now—like with Proposition 8 in California. When I talk to coworkers and straight friends, the issue surrounding AIDS relates to what‟s going on today.

If you want to talk about the struggle for gay rights and all that, at some point we will have equality.

You know, it is interesting. Part of what I have wanted to do as a lower caps social activist is to be able to address being gay as openly as I address being a Jew. I think actually it [that activist feeling] is an element of my faith. Judaism is about being partners with the divine, with the creation and perfection of the world.

I don‟t think of myself as an activist, but it is sort of like activist not by choice.

121 Commentary on the Younger Generation of Gay Men I found in early interviews that the participants spontaneously commented on the younger generation. Their perception was that young gay men today neglect to practice safe sex. Thus I included a question about this in subsequent interviews. I asked participants to state their thoughts on relating to the younger generation of gay men. The men commented that the younger generation could not appreciate the history of gay men now in midlife whose lives included the urban experience of the AIDS epidemic: I don‟t feel that one can fully recognize that period, what it was like before there were medications, when someone everyday was dying, when we had the wasting and cancers, and when we had the death wards. We knew there was nothing else to do.

Maybe they should step up the education levels. With kids today, you don‟t have that fear factor. It was death sentence. It was a death sentence, where now you don‟t have that.

I think there is manifestation in the gay community that says to the world, “Go to hell. You don‟t accept us. We don‟t accept you.” One very painful manifestation of that is young people who get HIV today, including people who get it on purpose to convert from positive to negative. Young people do not know what we had to do to get here.

Participants described their feelings associated with members of the younger generation‟s tendency to practice unsafe sex. The felt frustration, anger, and envy: You don‟t have to go very far to find the guys who are willing to bareback. There is a funny kind of denial. It is very hard to talk about.

There is a new generation that thinks they are impervious.

On one level, I am disgusted with my own community, this whole bare-backing movement and all that.

The selfishness of people who put orgasm over the perpetuation of a 100% preventable illness pisses me off. There are times I can‟t help myself and I deliver a sermon on why they are worthless scum.

122 The younger generation is thought of as in denial, as belligerent, and as uneducated, but also as enjoying a freedom: They are not nearly so self-conscious as I was.

You know envy is close because of, and this is certainly a cliché, how for them coming out doesn‟t look as bad as for people my age.

Another participant commented on a 45-year-old friend‟s recent relationship with a 27year-old man: “He was saying they go after what they want. It is liberating for someone who is 45 like he is.”

Participants defined feeling invisible, but this was not as prevalent as the note that younger gay men may not look at a gay man in midlife age and realize his history: “I don‟t think the youth I have run across think of me as an older person, not as a person who went through all the HIV stuff.”

There is also a reminder that feeling older comes as a result of relating to a generation that appears to stay young: The people I teach always stay 23 and I keep getting older. You are just aware of the increasing gulf between them and you. I used to go out to pizza with my students all the time. Now that doesn‟t happen so often. I don‟t think they perceive me as a pal anymore. So that reinforces the aging thing.

Thoughts on Mortality All participants were asked toward the end of the second interview to discuss their current thoughts about mortality, specifically how they thought about their own deaths. I have broken down the responses into three sections. The first category groups responses that recognize that by virtue of age, the participants now think about death more frequently. The second groups introspective answers. Finally, the third includes responses of participants that directly associated to the experience of witnessing the deaths of peers

123 in their twenties and thirties. These latter responses reflect answers from less than a third of the men in the study. Thus the majority of responses did not indicate a conscious association to the early losses, losses discussed and recounted earlier in the interviews.

This response portrays thoughts of mortality as a process of current life, without association to the past. Several men noted their thoughts on mortality recognizing these thoughts stem from their midlife experiences: I think about that [mortality] all the time, because I am 64, pretty much. I will be 64 and I read the obituaries more than I read the home and garden section, and I see lots of people my age and younger dropping dead You get a certain age and think of mortality.

You know, I am now 45 years old and men 45 and 60 seem to be dropping like flies of brain cancer for no apparent reason.

You know, none of us get out of here alive.

I don‟t think about it so infrequently anymore. I wonder how I am going to die. I am glad I don‟t know how and when, but I still wonder how and when.

None of the participants described fear of dying. It was clear, however, that some had contemplated it more than others: It‟s never bothered me. If I die, I die.

It doesn‟t incapacitate me, if that is what you mean, not at all. But then like, I have been fascinated with this Air France plane going down. I travel a lot. I guess I am more fascinated by that—not a good way to go as far as I am concerned.

When I was 30, I thought of death less than I do now, when interestingly, I was living in New York.

I have organized a majority of responses under the idea of introspection and contemplation: This doesn‟t way heavily on my mind all the time. It‟s just in the process of being introspective. Periodically, I have these conversations with myself, but it is not overwhelming.

124 I guess I call into question the value of possessions. I think I feel more and more—in a strange way, I feel more akin to the earth and its cycles. I see that as being more spiritual, as opposed to being separate.

I‟ve had a great life. I‟ve enjoyed myself and even with the valleys. The peaks can be fantastic too.

I don‟t want to look back saying, why didn‟t I just go do whatever. I hope I don‟t have many thoughts like that. I know I will though. I am forever looking back.

The question of mortality stimulated reflections on time, and on the meaning of life and experiences: Since the year 2000, where did that go? It just flew by.

From time to time I say to myself, “what is my role in this world?”

What does all this mean? If I lusted after things all these years, what‟s the point of this? What‟s that, an intermittent existential crisis?

I guess I call into question everything about the value of possessions, or doing anything, not that I will stop doing them. I see more things as being recycling, not reincarnation.

I don‟t want to die, because of course my whole sense of what life is, is because I am here on this earth, which is true for everybody. If you die, the whole world dies. But you know, it doesn‟t happen that way. But of course it does (in my mind) because I am so important and, lord knows, I am going to burn in hell, but the parties we are going to have. [This last statement was said with humor and laughter.]

Presented with this general question to discuss thoughts on mortality, several participants directly addressed the experience of the AIDS epidemic: I think having lost so many people and seeing how people can be stricken, generally, this is new in life. It certainly has given a sense that life is pretty precious. You only get one. You better ask if what you are doing matters.

You sort of lose your perspective in the day-to-day, what sort of things are important and what aren‟t. At least when thinking about people who have died, we shouldn‟t be afraid of taking risks or taking chances on like career stuff. You should keep taking chances. It is not life or death.

The old thing about it [death] beats the alternative—I do definitely have that perspective. Tim died at 40. So many people died. You‟re alive. That is a big deal.

125 Not only did participants appreciate life, they also were surprised at being alive.

They wondered how or why they had not been inflicted with HIV and died like their friends and acquaintances: The AIDS-related part of this is wondering why I didn‟t get sick. And of course, being incredibly grateful that I didn‟t, and not understanding. Is it something in my genetic makeup, since I wasn‟t using, there were no condoms involved.

I live with more gratitude and the value of life.

By every right, I should be dead.

Beyond being grateful, one participant noted that somehow the experiences of the AIDS epidemic provided a perspective in which he lived with less fear in his life and less fear about death: I feel like I am not so freaked out about death or whatever. I feel like I have had a little more exposure to it. I just don‟t, maybe that is just my own personality, but I don‟t feel so freaked out about it. I think you sort of have what time you have.

Another response differentiates between fearing death and fearing the manner of death, associating to the death of many during the AIDS epidemic: “I‟ve never been afraid of dying. It wasn‟t dying, it was the horrible way I thought at one point I was going to die.”

One participant reflected back not just on how the AIDS epidemic had impacted his thoughts of mortality, but also on how the loss of a sibling to cancer just prior to the 1980s had: I think I am unusual because I think I had to confront that sense of mortality when I was 20, or 19, when my sister was diagnosed with cancer. And then I went pretty quickly into the AIDS crisis. And again I was confronted with thinking, “how soon is it till I die?” I thought of myself in terms of death and dying earlier in my life, and that scene tends to pop up again periodically.

One of the respondents considered the question regarding thoughts on mortality and answered from the memory of his partner‟s AIDS-related death:

126 I was there the day before he passed. The reason he passed, I believe, is I gave him permission. I said it is OK to let go. That is the hardest thing I learned in life, and that is because of HIV, and that is to stand in front of someone you love more than life and tell them it is OK to let go. It is tough.

Thoughts on Spirituality Many participants indicated that they differentiated between spirituality and religion, yet thoughts on each were often intertwined. Earlier in their interviews, several of the men talked of their religious upbringing and religious background or their association to a particular faith or church. It was previously reported that one of the participants made a decision to join an Episcopal church, leaving his Catholic church (not without great consideration) because the Episcopal congregation ministered openly to its gay and AIDS-impacted members: Talking about the Episcopal community, this community stepped up in an extraordinary way because of so many people who were dying. They worked out rituals for grieving. The decided they did not want to bury one more person without celebrating gay life.

Another participant had described his active participation with a Catholic church that ministered openly to AIDS-impacted members and nonmembers, at times providing funerals for those rejected by their own denominations. Another participant mentioned the influence of his Jewish faith in his life and what it taught him. For these men, faith and religion were very intertwined and woven into the fabric of their interviews in talking about the AIDS epidemic: “I would think for myself, I somehow, I just looked at my faith and it helped me deal with it.�

Others participants had not talked so much about their faith or church throughout the interview, but noted their religious affiliation in discussing the question of spirituality

127 in their life in their midlife years and in relationship to their experiences during the AIDS epidemic years: No, I was fairly religious to start with. I was going to an MCC church before.

Dealing with the AIDS crisis didn‟t really change or make me more spiritual because I already was. I am religious, and it helped me have the right attitude going through it.

A number of men in the study did not claim any religious affiliation. Some stated that they had not been raised in any faith. The idea of spirituality was clearly recognized as something separate from religious affiliation. The experience of the AIDS epidemic did impact spirituality, and sentiments like the following were expressed more than once: I don‟t do much in institutional religious things. Since the AIDS crisis and loss of my partner, a lot of things got called into question. A lot of things got chucked and thrown out the window. A lot of my beliefs that were taken for granted got processed and got challenged by the emotional element and didn‟t make sense anymore. I didn‟t lose a sense of spirituality. That got reinforced.

Without any reference to religion, there were responses limited strictly to the concept of spirituality in life: We weren‟t church-going. I used to go on my own when I was younger. I have my own inner spirituality. I do believe, probably more so now at an older age. I have really formed my own inner strength and my own spirituality, my own connection to a supreme being in terms of something out there I think I am more at peace in the sense that whatever comes in the future just comes, and though I don‟t understand, I am more accepting of a sense of mystery of life. I don‟t need to know the answers to everything, and that I am more OK with. I don‟t know if it is the sense of AIDS or loss of friends or my partner that contributes to that viewpoint. He himself asked to be cremated. I think it made me focus more on the, I guess the idea of recycle. I have become more attuned to accepting that who we are and what we are in this life alters when we die, and I am not sure what happens, but I do believe that goes on beyond us. It is not necessarily about the things we have. It is about what we have done.

Some of the responses from participants reflected a lack of any change in thinking about the question of spirituality:

128 My family is not religious. I guess I always felt in terms of mortality, you have to make the most of what you have. And people make their own hell on this earth.

So I don‟t think that has changed. I don‟t believe in the whole heaven and hell thing. If there is a heaven, then Tim [his deceased partner] would be there. I don‟t believe that in a conventional concept.

The way I would use spiritual is being aware of talent and where does it come from, and genius. Where does it come from when I meet other people or talent, or have a musical experience that is so powerful that I just like dine out on that thing for months and months. That is my spiritualism, but it has nothing to do with finding God. Did AIDS affect my spiritual life? I don‟t think so, not that I am aware of.

Participants did address spirituality in their lives. Faith helped some participants cope with the AIDS epidemic. Other participants felt that the AIDS epidemic provided them with spiritual insights. Still others felt that nothing had changed in their thoughts on spirituality. The question had meaning and was cause for reflection: “To this day, I always say a prayer up in the plane and on the way down.”

Commentary on the Interviews As I concluded the second interviews, I checked in with participants looking to ascertain how they were doing as well as how they felt about participating in the interviews. Interestingly, a few men noted that they had been worried going into the interview about being helpful to me or worried about answering the questions correctly.

Across the board, all the participants felt good with having volunteered and participated.

Not one participant voiced regret. In fact, responses directly show that participants experienced positive reactions after participating in the first two interviews.

This is very positive.

It has been good and I have appreciated it.

It is great to have this conversation. I am doing fine.

129 I have no regrets about doing this.

Some participants elaborated on the positive experience of the interview, indicating why the experience felt good: “You made it easy to talk about things I hadn‟t talked about in a long time.” In commenting on talking about memories from 20 or more years ago that he had not previously discussed, one participant said, “I felt OK about it, and I felt a little ashamed that I had dishonored it by letting it not be in the front of my brain.”

The interviews created space to remember, and as the results indicated that, except for in isolated moments, participants had not ever before been put in a situation in which memories were recalled in a structured way. The interviews created opportunity to remember and often a desire to hold on to the recovered memories: “I want never to deny that this has happened. I want never to deny that this was significant. And each of these three men has had a strong imprint on who I am as a person.” Remembering trigged guilt about forgetting, but also the idea that remembering is important, if not vital. It felt like a part of the person‟s reality. But there was also a thought about more than the personal reality of the AIDS epidemic: Oh, absolutely. I think it is great. I think people need to know what really happened, not just that a lot of young guys died. About how, and the circumstances that were involved, and how difficult it was, just the reality of what it was. I don‟t think that straight people—they don‟t have a clue. There were a couple of movies made, but they never really got down to the day-to-day living experience of what it was like.

Several participants expressed the idea that the results of this study should somehow go beyond the purpose of this dissertation.

What you are doing here is fantastic. I hope you publish. I know it is for your dissertation. It could lead to a lot more. It is fantastically interesting. I wish you all the luck in the world.

130 I would love to hear how you actually write these reflections in your final document. It is like finally telling someone of their experience of World War II. It is still very alive.

Finally, in concluding an interview with the question of how the participant felt about the process, I found insight into a problem that I had encountered in executing the study‟s methodology. It had been difficult to recruit the participants. The plan was to recruit around 20 men. After interviewing 12 participants, I encountered a period over several months in which no new participants volunteered. No one was calling or e-mailing in response to my early solicitation efforts. In the original planning, consideration had been given to the possibility that recruitment could be difficult. I was asking participants up front to reminisce about what was likely a painful emotional period of life. Indeed, it seemed that participants were reluctant to come forward. The lack of new men volunteering was open to conjecture as to why. This concluding response from a participant provided data behind the conjecture: It was interesting because I heard about this study from my old roommate. And I sent it around to a lot of my friends. Because I think, well, that is me. I was surprised that nobody really wanted to do it. Like, they were like, it is the past and we don‟t really want to go there. I said, “Yeah, but it is kind of important that somebody is trying to look at that.” I was really surprised at some of my friends.

That was the reaction. So, good luck with this.

Twenty-one men did participate, and the interviews provided the data for this study. These 21 men found it important to talk about their lives now and, maybe without much forethought, jumped in and volunteered. This last piece of data noted that there were men who looked at my solicitation with a feeling of reluctance to open themselves up to remembering the AIDS epidemic years. Twenty-one men did remember, describe, feel, and recall more than they expected. The request to remember facilitated reconnection to emotions left behind and sometimes memories of sadness almost

131 forgotten, if not at least temporarily placed out of consciousness. One participant concluded with, “Thank you for this privilege.� This sentiment is returned to all 21 participants.

132

CHAPTER XI

FOLLOW-UP INTERVIEWS

Introduction The prior six chapters were e-mailed to participants as a draft prior to completing this dissertation and are reported here as the final results chapter. Participants were asked to review the chapters and respond if interested in discussing thoughts and reactions to the material. Six of the 21 participants have been interviewed, and results are noted in this chapter. Attempts to complete interviews with two additional participants were made, but interviews were not completed. Brief comments were received by e-mail response with one of these participants. The second participant also provided brief comments and a couple of comments by phone. He was not able to do a full interview but did intend to respond later. Two participants also e-mailed after receiving copies of the results. They stated intent to do follow-up interviews, but they did not respond further.

The intent of these third interviews was to accomplish member checking. Member checking provides a check on accuracy of the results establishing trustworthiness.

Lincoln and Guba (1985) define this as analogous to establishing internal validity.

133 The responses are organized into four properties: Additional Memories, It Wasn‟t All Processed, It Gave Me Clarity, and Capturing the Story of AIDS. These are followed by a Summary section.

Additional Memories Several participants stated that after reading the results chapters, they found themselves remembering more of their own experiences of loss and of caring for friends.

After reading about other men‟s experiences taking care of friends and going to hospital visits, one participant stated, “It sparked additional memories. Aha, that was my experience too in a different way.”

Another participant stated that reading the results brought him back to a memory of an ex-boyfriend he had previously reported. In this follow-up interview, he elaborated further on planning the funeral of his lost ex-boyfriend, and it helped him grieve the loss as he felt sad. The experience itself had been very emotional for him. He also remembered that a prior therapist had been diagnosed early on and later died as a result of AIDS. A third participant stated that he remembered more of his own lost friends and how losing them felt. He stated that a lot of this time period was very painful, and he was not sure how to describe the pain from that time.

Reading his own story reported in the results brought another participant back to remembering the friendship of someone lost he had talked of previously: “It brought me back to my friendship with him.” He felt sadness thinking of this lost friend. The

134 participants remembered additional experiences and connected with the sadness of loss during the early years of the AIDS epidemic.

A different type of recall was described by one participant in his follow-up interview. He stated that recently he had seen bruise marks on his legs. Prior to this he had started taking the medication Plavix and was told that as a side-effect, he may bruise easily. Knowing this, he still found himself looking at the bruises and thinking that he had Kaposi‟s sarcoma. He knew this was not true. He is HIV-negative. Still, the thought persisted. The bruise stimulated the memory of earlier experiences in his life, that is, of seeing men with Kaposi‟s sarcoma, which produces a raised bruise-like area on the skin.

His anxious reaction to the bruise was a type of reactivity, the interrelation between a current experience and a previous one.

It Wasn‟t All Processed After reading the results, a participant stated that he felt like experience of the AIDS epidemic for gay men was like going through war. He stated, “I don‟t think we as a community have processed this yet. The entire community went into a fugue state in order to survive and in order to cope.” Another participant stated that he felt the war metaphor was pertinent to the experience of the AIDS epidemic. With AIDS, he stated that gay men didn‟t realize they were going through the war while it was happening and that the battle fatigue experienced by gay men is not being discussed among them. These statements support earlier results from initial interviews. Participants had stated that they had not talked about their experiences within their circle of friends. Men in the study had

135 felt detached from the past. It was apparent that gay men had left the experiences of the AIDS epidemic behind.

It Gave Me Clarity Several statements made by participants show that reading the results chapters, lead to greater clarity or understanding that they had experienced something: I am a part of this story. Yes I did survive something, but I wouldn‟t say I was a survivor. I am a piece of this, a small piece of this. When I see how my experience fit with everyone else‟s, it is humbling.

Another participant stated that he felt he had less of an experience than others. He stated that the story of AIDS described in the study‟s results had resonated for him with his early experiences, and he elaborated on his reaction: It brought those feelings out. It left me feeling sad. I wondered, how did this happen? I think a lot of us identify this it as our disease. It was ours. Here was this lethal thing. It was killing you. I remember. It made me grateful. How did I survive?

The participant had described his realization that the AIDS epidemic had a different meaning for gay men as opposed to everyone else.

Statements from a third participant also show how he as a participant located himself within the early AIDS epidemic. He used the metaphor of a tornado hitting a town in the Midwest. Some of the residents will sustain greater damage, being in the direct path of the storm. Other residents will sustain less property damage as they were further away from the center. But all will know they had experienced a tornado come through. He stated, “I wasn‟t in the center, I was touched. It hit me and impacts me. I was on the sidelines rather than in the center of the storm.”

136 A fourth participant talked about how heavily he was hit by the epidemic. He described that reading the results chapters provided clarity to his experiences: “It had not been up front for me. It helped to clarify a lot of what I went through, and I am a stronger person for it.” This participant talked further about having lost almost all his friends in a 6 month period of time. He added that he had family who were survivors of the Holocaust. Elaborating, he stated that it was clear they had gone through horrendous experiences, yet they walked the streets and looked like everyone else. He likened his own memories of the AIDS epidemic to their experience: “I think this was an unusually awful experience.” He added that it is important to talk about what happened, just like it was important for Holocaust survivors to talk about what happened to them.

For another participant, his perspective after reading the results was to define the AIDS epidemic as a war: “There are scars, but most people continued on. The bloodletting stopped. There was a reprieve or truce like in Northern Ireland. It flares up once in awhile, and there is a death, but it is not like before.”

Capturing the Story of AIDS The intent of conducting follow-up interviews in this study was two-fold. First, it provided an opportunity to further enlighten the categories and their properties. The second intent was to evaluate the results obtained in the study. This second intent is called member checking. This section presents comments about the results from participants: You captured different thoughts and feelings of the time along with different points of view from those who were HIV-positive to the guys who were HIVnegative. This is really a significant time. You tapped into that.

137 You hit every aspect of the time that I went through. There were things I needed to thing about and reevaluate. You did that for me.

There is not a single thing in this that was surprising to me. It was totally congruent to my overall sense of what happened. Even if I had not experienced those things directly, I certainly heard about them for friends had experienced them.

I want to give this to my parents and have them read it.

Member checking provides a method of evaluating grounded theory research for trustworthiness. Six participants engaged in follow-up interviews. One other participant had set up a follow-up interview, but when called he stated that he wanted more time to finish reading the document. He had read through about two-thirds of the studyâ€&#x;s results.

He also stated he was in the middle of a couple of projects and didnâ€&#x;t have time to talk.

He did comment in the brief call that what he was very impressed with what he had read and thought it captured the epidemic years. These results support the accuracy of the six categories and their properties derived from the studyâ€&#x;s interviews.

Several similar comments were made in these final interviews, reflecting reactions of the participants: I would love to see a Spielberg-type project where people are videotaped. I can imagine, like with the Holocaust, people saying it never happened It is not the same scale as the Holocaust, but there is a need to document this so it can never be swept under the rug.

When I got it [the results], I wanted to read the first couple pages to get a feel for it. I ended up plopping down in the bedroom and reading the whole thing. I kept envisioning a play. I was literally envisioning a stage play when I was reading it.

This is really a significant time in history.

Summary The quality assurance step of member checking was defined as the intent of conducting third interviews. Responses did support the integrity of the results. It was not

138 anticipated that participants would continue debriefing, that is, processing their past by relating additional memories and talking about their feelings in relation to the AIDS epidemic years. After reading the results, participants described being conscious of the significance of this time period. It was compared to the Holocaust, to the ravages of a tornado, and to going through a war. This acknowledgment, that the early years of the epidemic were horrendous and painful, defines a reorganization of understanding concerning their personal narratives.

Along with personal clarity and new meaning to their experience came the realization that others need to recognize this time period for what it was, that is, a time of trauma for gay men. The desire to see the story as a movie or as a play recognizes the need now felt for others to validate the trauma of the AIDS epidemic.

139

CHAPTER XII

FINDINGS AND IMPLICATIONS

Introduction This chapter presents six findings. The findings will be briefly outlined. Then the implications of each finding are discussed and are followed by sections on the limitations of the study, clinical implications, and implications for future research.

Brief Description of Findings

Finding 1: Happiness in Lives of Gay Men in Midlife: Friends, Partners, and Happiness Gay men in midlife described their lives as satisfying, with feelings of happiness and enthusiasm for life (Chapter IV, Life Satisfaction, Happiness, and a Few Setbacks property, Âś 1.) Participants were actively involved in social activities, reported satisfying friendships (referring to friends as their family), and were still industrious in their jobs or other activities. Eleven men were in committed, long-term relationships.

140 Finding 2: Memories Were Readily Available for Recall Participants easily and vividly recalled early stories of gay men dying and the early media reports on HIV and AIDS, along with experiences of seeing weakened young gay men on the streets and caring for ill friends. They also remembered the names of lost friends and recalled the experiences of caring for them, sometimes relaying details surrounding deaths of friends and partners. The men in this study readily recalled feelings of fear, personal threat, shock, and powerlessness. These memories and emotional responses were often reported devoid of affect, as if reporting the news of the day.

Finding 3: Recalling the “Forgotten� Losses In addition to the memories first recalled, further memories of persons lost (both the names and experiences around the deaths of persons lost) were recalled secondary to participation in the first interviews. These were referred to as forgotten memories by a participant. Additional experiences were also reported in the third, follow-up interviews, which were conducted after participants read through a draft of the results chapters.

Finding 4: Reconnection to Affect Participants spontaneously were overcome with intense affect during the interviews and between the first and second interviews. When this intense affect came up, participants were surprised at experiencing these emotions and surprised to find they were suddenly crying, stating they were unaware these feelings were inside them.

141 Finding 5: Gay Midlife and Generativity Gay men in midlife were caring for their aging parents, participating in volunteer work, donating to charities, and parenting; they had been or were members of boards for not-for profit organizations, involved in academic work in which they were teaching and mentoring members of the younger generation, informally mentoring younger gay men, and involved in creative activities. These behaviors represent the presence of generativity, a hallmark of midlife development.

Finding 6: Gay men in Midlife: Mortality and Transformation of Narcissism This study population of gay men in midlife accepted mortality as inevitable, sometimes as a factor of aging but also as a result of past experiences of loss during the AIDS years. Some noted their changing bodies. Others noted either the death of their parents or the presence of aging parents as contributing to their realization of death.

Others directly reflected on the experience of deaths of friends during the AIDS epidemic as contributing to valuing life now because we all have to deal with the end at some point. Their acceptance of death reflected an internal transformation of narcissism.

Theoretical Implications Finding 1: Happiness in Lives of Gay Men in Midlife: Friends, Partners, and Happiness This study population of gay men in midlife described happy and satisfying lives.

Their lives included experiences of satisfying long-term committed relationships and valued friendships. A quote from Chapter IV, under the property Life Satisfaction, Happiness, and Few Setbacks exemplified this: “I think I am at the best point in my life,

142 better than I have ever been.� Whether in a relationship or single, the men in this study reported having close friends and were socially involved. Friends were often referred to as family.

In the property Ingredients for Happiness, Chapter IV, results showed that friendships were a primary source of life satisfaction: I have a large circle of friends that is very satisfying. After 9/11, I went back to church and Iâ€&#x;m a regular member of [church name omitted] in Lincoln Park.

I have a partner of eight years. We have a zillion friends and we are all over the place all the time doing stuff, including some friends that we go on vacation with and weekend trips with and things like that.

I still maintain some friendships with people from college and one person from high school. And I think thatâ€&#x;s probably what provides the most satisfaction.

Though men had described losing almost all if not all good friends during the AIDS epidemic years, they had found ways to create new friendships, keeping themselves involved in community activities. One participant founded a social group, which meets monthly. Another had become a member of a gay chorus. New friendships were formed in these activities. Though lost friends were not replaced, the new friendships were satisfying. Results show these gay men in midlife held on to committed relationships formed prior to, during, and after the early AIDS years (Chapter III, Participants property). Some participants reported loss of almost all the friends listed in their address books. Nevertheless, these men reported new close friendships.

The fact that feeling happy was tied to partners and friendships supports Quam and Whitford (1992). They found that older gay men and lesbians who were involved in community programs and had a core group of friends reported a better adjustment to aging. In this study, adjustment to midlife, even after experiencing devastating losses, is reported as a result of social connections, partnerships, and involvement in social groups.

143 Results supporting this are reported in Chapter IV, especially under the property titled Ingredients for Happiness.

This first finding is significant for two reasons. First, few studies on adult gay male development exist. Studies of midlife have focused on heterosexual populations.

Second, though few studies exist, it has not always been the expectation that gay men would transition into midlife with healthy feelings of happiness and satisfying social connections. Kertzner (2001) expressed concerns that stigmatized sexual identity could inhibit satisfactory development of gay men moving into midlife. Concerns were noted

by Kertnzer (2001) about how the HIV epidemic has shaped homosexual identity. Friend (1987) expressed concerns about midlife development, pointing to the problem of fragmented sense of self in gay men and issues of separateness and alienation.

This study did not include a survey regarding the meaning of identity or assessment self-cohesiveness. It did find, however, that happiness and/or life satisfaction were reported by all 21 participants. Cohler and Hoestetler (2002) named factors impacting the gay midlife experience. “Homophobic discrimination and stigma, the different structure and timing of gay life course, and the far-reaching effects of the AIDS pandemic have all contributed to a gay midlife experience that diverges from the heterosexual norm� (p. 232). This study specifically looked at the last of these factors, the AIDS pandemic. All the participants experienced the early AIDS years within an urban gay community. The only factor dampening the experience of midlife that came through is the factor of job loss or underemployment caused by a current recession. Thus happiness, despite the experiences of the AIDS years, is found in this population of gay men in midlife (Chapter IV, Life Satisfaction, Happiness, and a Few Setbacks).

144 Some men in this study described psychiatric symptoms along the way, receiving treatment (both medication and psychotherapy). These men also talked of now having active lives, feeling life satisfaction and hope for the future. Despite carrying the impact of the AIDS years, gay men transitioned into midlife years with satisfying careers and relationships, embracing changes and finding satisfaction and happiness in life.

Finding 2: Memories Were Readily Available for Recall

Suppression and Memories Gay men in midlife easily recalled memories and emotions from the early AIDS years. Chapter V details responses from participants when they were asked to recall first memories and then about the AIDS years as they continued. Under the property I Remember Hearing About It Before It Had a Name, in Chapter V, vivid memories of first news reports about gay men dying and early stories of acquaintances becoming mysteriously sick and later dying were reported by participants. With little difficulty participants continued relating experiences from the early AIDS years. These memories are described in Chapter V in the property HIV Hits the Senses and the property Initial Personal Reactions. Emotional reactions were also reported in Chapter V under the property It Was a Scary Time and the property Feeling Powerless.

Participants said that remembering was painful, yet welcomed (Chapter VII, The Interview: Emotional Reactions). For gay men in this study, the memories recalled during and between interviews had been split off from consciousness until recalled for this study: “You know, it is kind of weird. I hadnâ€&#x;t even thought about it until recently when I

145 answered your ad� (Chapter VIII, Emotional Reactions). Memories were preconscious.

There were exceptions to this: a couple of men did report that memories came into consciousness over the last 14 years. Others described moving on in life (Chapter VIII, As It Slowed Down, You Just Didnâ€&#x;t Think property): I think a lot of my behavior over the years has been survival mode, thinking more immediate than long term.

People were too traumatized and were getting back to business as usual or simply surviving.

Suppression of memories from the early AIDS epidemic years is evident in this population of gay men in midlife. Laplanche and Pontalis (1973) differentiate repression and suppression. Under the definition of suppression, they write, In a broad sense, mental operation tending to eliminate distressing or unwelcome contents (ideas, affects, etc.) from consciousness. When suppression is understood in this way, repression is seen as a specific mode of suppression.

In a narrower sense, the term denotes certain types of suppression in a sense which differs from repression either (a) in that the procedure is of a conscious nature, while the suppressed content passes only into the preconscious, not into the unconscious; or (b) because, in the case of the suppression of an affect, this is not transposed into the unconscious but instead inhibited or even abolished (p.438).

Using the above definition, repressed memories are unconscious. Thus repressed memories would not be easily recalled. Unconscious material is unavailable to the conscious mind. It becomes the work of treatment to gain access to the unconscious. It was in the context of interviews that memories came forward for this study population, thus implying suppression versus repression.

It is beyond the scope of this study to determine if repression exists in this study population of gay men after the early AIDS epidemic years. The fact that results are

146 obtained by study interviews and not by clinical work limits the ability to ascertain the presence of repression.

Identification and Feeling Doomed to Die Feelings of fear and feelings of doom were reported during interviews, initially, and significantly, without any intense emotion. Results show that early reports of illness and death, along with personally witnessed experience, provoked these fears of death and feelings of doom for gay men. This finding implies the work of identification felt by gay men within these urban gay communities. Laplanche and Pontalis (1973) define identification as a process in which properties of others are assimilated by the individual, who is then transformed. This study group of gay men recalled an immediate emotional hit in reaction to news of illness and death within their community. As news continued and personal experiences of friends becoming ill and dying ensued, young gay men felt as if all gay men were doomed; that is, they felt their own lives threatened. Results here showed that despite testing negative for HIV, gay men remained fearful, worrying they would end up sick and/or dead. Thus the results support the literature written during the AIDS epidemic years that noted the reaction of gay men and the feeling of being doomed by identification with their peer group (Cohen & Abramowitz, 1990; Getty & Stern, 1990; Martin 1988; Shelby, 1992; Wright & Coyle, 1996).

Gay men are prone to failures in satisfaction of twinship needs (Martinez, 2003).

Healthy development includes satisfaction of the need for alikeness, promoting a feeling of belonging (Kohut, 1971). Gay men seek satisfaction of selfobject needs, specifically twinship needs, by identifying with other gay men (Martinez, 2003). “Selfobjects are

147 psychological representations of others that are experienced as part of the self” (GalatzerLevy & Cohler, 1990). Galatzer-Levy and Cohler (1990) succinctly define the function of selfobjects, “to include not only mental representations that stabilize and vitalize the experience of the self, but also those that promote development by, as it were, holding the person through the periods of instability and change that are necessary for psychological development” (p. 94). Identification with others forms a feeling of connection. Twinship needs are met within this context. Feeling likeness with others is an essential ongoing satisfaction of a specific selfobject experience. Kohut (1977) defined the need for selfobjects throughout life. Wolfe (1988) defines twinship (alternately referred to as alterego needs) as, “a need to experience an essential alikeness with the selfobject” (p. 55).

Wolfe (1988) also notes, “the need for the experience of likeness of the selfobject and to be strengthened by its quietly sustaining presence…occur from about the oedipal phase onward” (p. 57). Gay men read about and heard about HIV-related illness and deaths.

They saw weakened, ill HIV-infected men on the street and read weekly obituaries of friends and acquaintances from their social world. A feeling of certain doom was felt by these gay men simply by identification with their peers. It was not by virtue of being HIV positive.

Arguably, gay men in urban communities find satisfaction of essential twinship needs. Bonds are created, and within their network of friends, they feel a part of their identity supported by identification their gay peer group. For gay men during the AIDS epidemic years, identification with their peers, men with whom twinship needs were satisfied, was the source of feeling doomed to become ill and die. The threat of dying was not due to health status. This is an essential differentiation. Results reported in Chapter V,

148 under the property The Impact on Life: Testing; Sexual Choices, Dating, and Relationships, support this argument: You didn‟t know what sexual practices were more or less likely to cause you to become infected. They just didn‟t know early on, but yes, it was always in, not even the back of every gay man‟s mind. It was in the front of their mind. What? I could be next. Will I be next? What have I done in my past?

If you are homosexual, you will establish lesions on your body, and I felt that I am going to die. So I checked my body daily for lesions.

Well, I also thought people were converting like dominos falling, and you know it just—early on it just seemed like a question of time. If you were gay, you were going to die.

This population of gay men shows evidence of suppression and identification in association to the early years of the AIDS epidemic. Memories came forward with ease, but it was clear the experiences were out of consciousness. By process of identification, these gay men described feelings of doom, fearing the threat of impending death by virtue of being a gay man in the early 1980s.

Finding 3: Recalling the “Forgotten” Losses

Overwhelming Loss, the Losses Forgotten and Now Remembered Memories of lost friends and experiences of caring for partners and friends were all reported as indicated in Chapter VI. Beyond these first memories, study results report “forgotten” memories of AIDS-related losses. Many of these gay men recalled lost friends and experiences around their deaths between interviews, secondary to having participated in the first interview. These results are found in Chapter VII under the property Additional Memories. Additional names were remembered along with details

149 about the person lost. Again, what is seen here, evoked by the experience of the first interview, are memories that weren‟t initially remembered and were referred to as “almost forgotten” by a participant. Specifically these were memories around loss.

Repressed memories would not be so readily available to recall; they are suppressed memories. The early years were filled with experiences of loss and feelings of fear. Men disappeared. The experiences are recognized as overwhelming, more than can be processed at any given time. Some memories were consciously held over the years by participants. “You know, I don‟t think that a day passes that I don‟t think back” (Chapter VIII, I Have Remembered It through the Years). Other memories were suppressed, at times recalled in response to an experience or conversation and recalled secondary to the first interview. This supports the idea that the AIDS epidemic years were psychologically traumatic for gay men in urban communities.

Evidence of Trauma Ornstein (1994) examines the aspect of memory in defining trauma. She borrows from Kohut (1977) and Stern (1985), defining psychic continuity and integration of memories into a coherent sense of self. Traumatic memories can threaten continuity of self. Thus evidence of fragmented memory is indicative of adult trauma (Ornstein, 1994).

The results here show evidence of fragmented memories, supporting the idea that the AIDS epidemic years were felt as traumatic for urban gay men. For Ornstein (1994), the intrusive fragments of memory need to be integrated by healing the split that keeps the often complex emotions from being consciously experienced and processed.

150 Boulanger (2002) noted that when looking at adult trauma, it is important to examine the meaning and the organization of the experience. Study participants‟ experiences were organized with easily recalled feelings of fear, shock, and doom.

Trauma is defined by Hurvich (1989) as fears of being overwhelmed and fears of being annihilated. He supports the concept of disintegration anxiety defined by Kohut (1984).

The individual can experience fear of annihilation at any point in life when encountering a perceived threat to survival (Hurvich, 1989). The men in this study talked specifically of their fears of getting sick and dying. They described experiences consistent with Hurvich‟s definition of trauma and Kohut‟s concept of disintegration anxiety.

Memories were initially relayed without emotion. By their nature, traumatic memories are unspeakable and thus disavowed. Until men were prompted by this study, they had not thought about these memories for years. Others noted they were thought about, but not in such an organized manner (see Chapter VII). Laplanche and Pontalis (1973) define disavowal as a “term used by Freud in the specific sense of a mode of defense that consists in the subject‟s refusing to recognize the reality of a traumatic perception” (p. 118). The definition continues, noting a splitting of the ego but not one that involves a conflict between the ego and the id. As well, “disavowal of a perception is directed towards external reality” (p. 119).

In his study of trauma, Boulanger (2002) described survivors‟ accounts of experiences without emotion. Participants showed evidence of relating history devoid of emotion. Utilizing the above definitions of trauma with application to the findings of this study, the results exemplify evidence of trauma secondary to the AIDS epidemic years

151 for gay men. Memories were recalled without emotion, and “forgotten” memories were evoked following the interviews.

The memories elicited in this study define the experience of the AIDS epidemic years as traumatic. Memories had been suppressed and affect disavowed. Fragmented memories were recalled without emotion, demonstrating that disavowal was present in this population of gay men in midlife. Evidence of suppression and disavowal support the contention that these gay men experienced the early AIDS epidemic years as traumatic.

In addition to this evidence, one experience recalled universally by this population was a fear of annihilation.

Finding 4: Reconnection to Affect

Experiencing the Unanticipated Emotion In the property It Wasn‟t So Bad for Me, in Chapter V, describing his experience of the early AIDS years, one participant stated that his experience was not so bad. As his interview continued, he recalled daily phone calls informing him of another AIDS-related illness in or death of in an acquaintance. At this point, he became tearful. Intense affect was felt within this initial interview and he expressed surprise at this spontaneous eruption of emotion. (Chapter VIII, I Was Surprised at What I Felt). Other participants related experiences of unanticipated emotions in this same section: I was surprised I got teary.

I was struck by how much emotion was there for me, and sadness, some confusion around that which had been all encompassing.

152 I had tears very close to the surface. I wasnâ€&#x;t sure if they were tears of missing these people or if they were tears for how lucky I was not to expire. There was a wealth of emotion, sadness, grief, but there also was this more subtle feeling, a sense of amazement and gratitude.

And since that time [the first interview] you have been in my mind every so often, because certainly more than ever before, because it comes back to me you know. I will flash on something or I will pick up on somebody, maybe someone we talked about or whatever. It just stayed with me. Iâ€&#x;ll be back at that interview again three or four times a week.

These experiences exemplify reconnection to affect from the earlier experiences of loss. Another experience of intense affect was again unexpectedly displayed and is described in Chapter VI under the property Names: The Magnitude of Lost Friends. As he began naming lost friends and began silently counting, intense affect suddenly came forth. The participant stopped and felt overwhelmed with sadness; he found himself unexpectedly crying. He had been unaware of this emotion in him. The affect came as he was silently counting and realized that 13 close friends had been lost in the early 1980s, victims of AIDS. Prior to this moment, he had described moving in with a close friend to care for him in his last 6 months of his life. He described that part of his history as a matter of fact. He had stated it was just what men did. They cared for their friends. The spontaneous emotional expressions exemplify reconnection to intense affect, affect that had been disavowed, hidden from awareness, and unarticulated.

These experiences described above exemplify the moment in which the process of mourning, defined by Shelby (1992), takes place. It is in these moments that we see the reorganization of intense affect states along with an integration of the loss into the experience of the self. Ornstein (1994) noted that fragments of memory can be felt as intrusive and require integration in order to heal the split that often keeps complex emotions from being consciously experienced and processed.

153 The experience describes one participant coming to the realization that 13 friends had been lost through the AIDS epidemic. Previously during his interview he had described friends getting sick. He recalled that he and his partner packed their bags and moved into a close friendâ€&#x;s home in order to care for him until he died. It was during the first interview that he realized how many good friends were lost as early victims to HIV. This gave a new level of meaning to his past. It was accompanied by unanticipated affect.

The realization that so many good friends were lost provoked tears, which he did not expect. For him as for many, he proceeded past the AIDS years with a partner, with friends and family, and with new friends met through social and recreational involvements. They reorganized around existing or new relationships maintaining a sense of self-cohesiveness following massive loss and feelings of personal threat. These existing friendship, new friendships, life partners, and family continued to provide selfobject functions, allowing for maintenance of self-cohesion. There were symptoms along the way, but these gay men in midlife described healthy development into midlife.

The participant described above showed capacity to adapt and move forward in life though he had not fully integrated the experiences of loss and the affect into his conscious self-narrative.

Affect and Disavowal Participants described isolated moments of conversation with friends, usually the remembrance of a lost friend. But in these conversations since the early AIDS epidemic years, these gay men were not talking about what this past actually felt like, the magnitude of what had happened, and the impact of AIDS. Organization around memory

154 was not internally accomplished. Within the social context these gay men participated in an unstated collusion to avoid conversation or effectively deny the past. This avoidance of the past sustained the internal disavowal. Gay men collectively colluded in a process of disavowal of this past, thus inhibiting the incorporation of this traumatic history as a part of their identity. It came up only in fragments without internal reorganization.

Additional evidence of this collective disavowal is also reported in the results in Chapter IX, under the Commentary on the Interview property. The quote comes from concluding remarks of one participant.

It was interesting because I heard about this study from my old roommate. And I sent it around to a lot of my friends. Because I think, well, that is me. I was surprised that nobody really wanted to do it. Like, they were like, it is the past and we donâ€&#x;t really want to go there. I said, “Yeah, but it is kind of important that somebody is trying to look at that.â€? I was really surprised at some of my friends.

That was their reaction. So, good luck with this.

Recruitment for participants began in November, 2008. Twelve men had volunteered for participation by March of 2009. For two months, there were no additional participants. Recruitment efforts were stepped up, reaching out through internet resources. Nine additional participants came forward. The above quote may exemplify the sentiments of men who were aware of the study but did not volunteer. Many did not want to go there, that is, to remembering the early days of the AIDS epidemic. An interesting question is not answered in this study. Why were 21 gay men willing to go there? Disavowal protects individuals from intense pain and affect. Life can go on as it did for men in this study. This study cannot comment on why participants were willing to remember and why some reconnected to the emotions and some did not.

Several participants described problems along the way. Participants noted treatment for substance abuse problems and psychiatric treatment. One of the participants

155 directly related his symptoms and treatment to the trauma of losing so many friends in a short time. He had lost the last of these friends and found himself walking down the street feeling paranoid. Inpatient psychiatric care with a diagnosis of post-traumatic reaction followed (Chapter VIII, There Had Been Problems along the Way property). There were other reports of outpatient psychiatric therapies, yet all of these men went on into midlife.

They found satisfaction and happiness and left the AIDS years behind. Results reported under the property As It Slowed Down, You Just Didnâ€&#x;t Think of It, in Chapter VIII, describe men actively putting the years behind them. The following quotes exemplify this idea: I think a lot of my behavior over the years has been survival mode, thinking more immediate than long term.

People were too traumatized and were getting back to business as usual or simply surviving.

The attempt was made to put the years behind them. Several participants described symptoms, but others found detachment without intrusive symptoms. There is evidence that this period of detachment implied a period in which disavowal was maintained. Experiences were remembered, some were suppressed, but for all, emotions were disavowed.

Affect, Disavowal, and Articulation In the property section titled I was Surprised at What I Felt (Chapter II) there is further evidence of reconnection to disavowed, complex emotions occurring secondary to the interview. Asking about his reaction to the first interview, a participant in a phone interview became silent, and upon inquiry it was clear he was overwhelmed with

156 emotion. Within this same property, results show that a number of participants exhibited emotional reactions to the first interviews, some noting that this was the first time they had been asked to recall and talk about the early AIDS epidemic years.

As noted above, participants spontaneously and surprisingly felt intense emotion during the interviews. Others described intense affect between interviews. Some men continued feeling detached from their past experiences, neither showing emotional reaction throughout the interviews nor describing emotional reactions between interviews. These results support the implication that disavowal is present for these gay men in midlife as a result of living through the early AIDS epidemic years. The absence of emotional reconnection implies maintenance of disavowal. What was unanticipated in this study was the experience of men reconnecting to these emotions secondary to the interview process. The inquiry into the past, though part of a study and not part of clinical interaction, provoked reconnection. This is the articulation of disavowed affect described

by Ornstein (1994). She noted that this articulation is necessary for fragmented memories to be integrated into the coherent sense of self.

Emotions remained out of reach for some as evidenced by participants who remained emotionally detached in descriptions of their experiences. Several men voiced no emotional response, stating nothing further came to mind after the initial interview. In the property titled I Was Surprised at What I Felt, in Chapter VII, there is evidence of this. From that section is this quote: “It was about what I expected.” Elaborating on this idea, another participant noted, “I can‟t find the word for it, but detached is kind of how I felt looking back at the time as something that happened to me awhile ago, and I just feel emotionally detached from all of that.”

157

Defenses and Healthy Functioning Defenses have value for healthy functioning. The ego‟s use of suppression and disavowal protect the individual, maintaining efforts in maintenance of self-cohesion.

Knox (2003) states, “the human being constantly searches for meaningful links, but trauma reverses this process by creating dissociative defenses which fragment an unbearable experience into parts, so that its full horror is mitigated” (A Developmental Account of Archetypal Defenses property, ¶ 4). The purpose of defense is defined as twofold: On the one hand, defenses serve to fragment painful meaning, rendering it less unbearable by a process of dissociation and compartmentalization. On the other hand, defenses are also attempts at repair, constructing new and less distressing symbolic significance which renders trauma less threatening to one‟s personal sense of worth and identity (Knox, 2003, Dissociative and Constructive Aspects of Defenses section, ¶ 1).

Auerhahn and Peskin (2003) examined trauma reactions of holocaust survivors.

She described the functionality of defense related to feelings of powerlessness. Before continuing with the implications of Auerhahn and Peskin‟s work, it is emphasized here that the experiences of the early AIDS epidemic years do not compare to the circumstances and horrendous experiences of the Holocaust victims. Comparison to the holocaust is not intended to offend anyone. With apology if offense is taken, the psychological constructs defined by Auerhahn and Peskin have application to gay men traumatized in the early AIDS epidemic years. In fact, participants, though also quick to note differences, expressed similarity of their experience to the Holocaust. Auerhahn and Peskin (2003) pointed out that withdrawal from knowledge of the trauma is expected in the context of unwitnessed trauma. Maintaining dissociative defense protects from the

158 feelings of futility and powerlessness associated to the trauma itself and failure of the trauma to be acknowledged.

Arguably, the early AIDS epidemic years have not been acknowledged for trauma experiences of young gay men. Clinically there were reports of disease and dying, but the experiences as chronicled in the results of this study have not been put forth publicly and defined as shared trauma. There is evidence within this study population that the trauma of the early AIDS epidemic years are not acknowledged within the population of gay men studied. Feelings of powerlessness are described by participants. Some faulted the government for turning away as it was only a bunch of homosexuals that were impacted. Auerhahn and Peskin (2003) defined the expected use of defense for holocaust survivors, a factor present also in this population of gay men traumatized by AIDS. Dissociative defenses, that is, suppression and disavowal, became integral in maintaining functioning and in effect allowing healthy development in the face of unacknowledged trauma. Defenses connected to AIDS-related trauma may have served this population of gay men, allowing life to go on in functional manners and moving toward lifeâ€&#x;s goal. Gay men successfully pursued career goals, transitioned to active and satisfying retirement, and sometimes pursued major life changes to satisfy dreams, for example pursuit of art or moving to a rural area for a simpler life.

In effect, given the above theoretical argument and given the lack of early social and governmental response during the AIDS epidemic years, these men utilized defenses to allay re-experiencing painful feelings of hopelessness associated with environmental failure. Gay men felt they were all doomed and that society at large didnâ€&#x;t care. Feelings of abandonment come across in the statements made that nothing was done by those

159 outside the gay community. A position of denial protects the individual from reexperiencing the pain of prior failure felt in the lack of social and governmental response to the crisis of AIDS in the 1980s. Study participants felt the heterosexual world now had additional rationalization to discriminate against homosexuals and thus the only help in this crisis would come from within the gay community, not from outside.

Resonating with the Results: Follow-Up Interviews The studyâ€&#x;s design did include third interviews. These were requested after sending participants a draft of the results chapters. In two of these interviews, the men reported a greater sense of integration. “I found myselfâ€? was a comment from one participant in one of these follow-up interviews. The participant described reading the six results chapters sent to him and feeling excited, anxious to relate what he read to a friend.

He felt a connection to the story and a feeling that he found himself. Through further inquiry, this participant defined his reaction, stating he identified with the feelings and experiences of others; he recognized his own reactions and his past experiences of caring for friends and watching them die. He identified himself as one of many with similar experiences of having lived through the early AIDS epidemic years. The un-thought was known (Bollas, 1987). He realized he had felt hit by something, something threatening and something absorbed as a part of his identity. Previously, this feeling was unstated, both internally as an organized experience and externally to others. He talked of excitement after reading the draft of the results chapter of this study, having defined himself within the experience of others and wanting to tell a friend about his experience.

160 This same idea was noted by a second participant after reading the results chapters. He stated that the overall story “resonated� within him. This participant had entered the study feeling removed from the experience of others, but now also felt he had been part of this. These statements imply a process of internal transformation. The men stated they found themselves after reading through the results.

Gay men in midlife were talking for the first time about their memories of the AIDS years in this study. Memories had come up on occasion over the last 14 years, but generally without affect. Participants had emotionally laden memories and for some the experience evoked intense emotions.

Loss, Trauma, and Affect Integration The experiences of massive loss had been left behind. Shelby (1992) studied massive loss experiences for gay men due to AIDS. The process of mourning includes the reorganization of intense affect states along with an integration of the loss into the experience of the self. For this psychic reorganization, supportive others who create an environment of selfobject functioning are required (Shelby, 1992, p. 219). Participants concentrated on their relationships, friendships, and their jobs. They described the relationships that provided needed selfobject functioning against a background of earlier massive loss. The gay men in this study maintained environments of selfobject functioning, but these were not environments in which they were processing their losses.

Memories were held outside of consciousness. There were moments over the last 14 years in which a conversation among friends evoked memories of a lost friend. Yet not one of these men described any conversation in which memory and affect associated to

161 the AIDS epidemic years was processed. The environment of selfobject functioning maintained self-cohesion, albeit without providing opportunity to mutually process and integrate shared trauma.

In this population of gay men in midlife, there is no clear evidence of prior affect integration when it comes to the overall experiences of multiples losses during AIDS epidemic years. Evidence of suppression was apparent in all participants. Some described their reconnection to intense affect and others experienced affect during interviews. All of the participants expressed feeling good that they experienced this reconnection. There is evidence to support the idea that internal reorganization occurred for some of the men in this study by virtue of their reconnection to feelings of loss. Further, men in the study reported an experience of “finding themselves� in reading the results, recognizing that part of their personal narratives included this traumatic piece of history. They realized they were part of a group of gay men who lived through similar experiences with similar feelings, integrating experience and affect into a sense of self.

In summary, gay men in midlife described happy and satisfying lives. Results also indicate that memories of the AIDS epidemic years were easily recalled, though there is evidence of suppression. This group of post-AIDS-years gay men first reported fragmented memories associated to this time period. Then they recalled losses and names and experiences of friends, lovers, acquaintances who were victims to AIDS. Along with recall of fragmented memories, there was a reconnection to suppressed memories.

Additional losses were remembered. Finally, participants reconnected to what had been disavowed affect. Sadness and loss were felt following the interviews. Participation in this study triggered mourning and reorganization of memory. Evidence of suppression

162 and disavowal support the idea that the early AIDS epidemic years were traumatic. In follow-up interviews, after reviewing study results defining experiences of the early AIDS epidemic years, men in this group expressed a new sense of identity as one of many gay men who had experienced similar trauma associated with the social aspect of the AIDS epidemic in its early, life-threatening years. There is evidence that participants did have an experience of placing themselves in a context of a shared experience.

Finding 5: Gay Midlife and Generativity

Defining Generativity in this Population of Gay Men in Midlife The previous two findings pertain to developmental aspects of midlife found in gay men. The fifth finding states that these gay men in midlife described behaviors consistent with the accomplishment of generativity. Erickson (1959/1980) proposed that the psychosocial crisis of midlife is generativity versus stagnation. The individualâ€&#x;s involvement in self and uninvolved in the care of others defines stagnation. Generativity is defined by care for others. Erikson (1959/1980) defined generativity in terms of caring for the next generation by virtue of procreation. Erikson (1959/1980) stated, Generativity is primarily the interest in establishing and guiding the next generation, although there are people who, from misfortune or because of special and genuine gifts in other directions, do not apply this drive to offspring, but to other forms of altruistic concern and creativity which absorb their kind of parental responsibility (p. 103).

Results indicated active involvement in care for others. One participant in this study had adopted a child, now a teenager. This represented less than 5% of the studyâ€&#x;s population, which is a population that is by no means representative of all gay men in

163 midlife. This same participant was worked in the field of education and verbalized a genuine investment in mentoring his students.

Beyond those involved in parenting and in education, participants described their involvements in volunteer work and charitable giving. Quotations from the property Volunteering and Political Activist in Chapter IX are noted below. They exemplify generative behaviors in this study population.

I am not specifically giving back to my community, but act on the feeling to give back, the feeling of the need to give back that was entirely related to being a survivor of the AIDS crises.

So for while I looked at what I could do to give back that was in the realm of what I could handle. Now I am doing three different volunteer activities. I started [a social group for gay men]. I also donate to charities.

Oh lord. I was involved in the HRC [Human Rights Campaign] for 9 years. I served on the Board of Governors for four years. I was involved in the Center on Halsted. I‟ve done a lot.

I guess I feel like by helping, I help myself, and I feel stronger.

Participants also described caring for aging parents and mentoring younger gay men. One of the retired participants kept busing caring for new friends, having moved to a rural area within the last few years. He was involved in a group, educating others on HIV and AIDS. Men in this study were passing on what they learned in various ways through formal volunteer work, informal care of others, mentoring, and even parenting.

Several participants expressed concern for the younger generation of gay men.

One participant stated, “Maybe they should step up the education levels. With kids today, you don‟t have that fear factor. It was death sentence. It was a death sentence, where now you don‟t have that” (Chapter IX, Commentary on the Younger Generation of Gay Men).

164 Generativity and Its Developmental Antecedent: Intimacy Over and over participants described their lives inclusive of generative behaviors and sentiments in their midlife years. The AIDS epidemic years were also years of caring for others, their partners and their friends when they were in their twenties and thirties.

These are years Erikson and Erikson (1982/1997) state are marked by the psychosocial crisis of intimacy versus isolation. Development of intimacy is required in order to care for others. In the Battle Stories property, in Chapter VI, results demonstrate stories of younger gay men stepping up to care for dying partners and friends. Thus along with the developmental task of developing intimacy, gay men in early adulthood were challenged to care for others, albeit not for younger generations but for their own. Erikson and Erikson (1982/1997) stated, Intimacy and generativity are obviously closely related, but intimacy must first provide an affiliative kind of ritualization that cultivates styles of ingroup living held together by often extremely idiosyncratic ways of behaving and speaking.

For intimacy remains the guardian of that elusive and yet all-pervasive power in psychosocial evolution, the power of communal and personal style: which gives and demands conviction in the shared patterns of living; guarantees some individual identity even in joint intimacy; and binds into a way of life the solidarity of a joint commitment to a style of production. These, at least, are the high goals to which development, in principle, is tuned (p.71).

By the above definition, where generativity is, there is evidence of intimacy.

Young gay men their twenties and thirties, now in midlife, were challenged to develop intimacy. They were confronted by virtue of the AIDS epidemic with massive loss, personal threat, fear, and feelings of powerlessness (see results reported in Chapter V).

They learned to care for friends, moving into their homes, caring for them as they were dying from AIDS. We kept our place, but we moved enough clothes and so forth that we stayed in his guest bedroom and cared for him for the last 6 months of his life. And that was

165 the most difficult thing that I had ever gone through, watching him suffer, trying to care for him (Chapter VI, Battle Stories property, Âś 1).

Another statement exemplifying the act of caring, and in this case the act of intimacy, is reported in Chapter VI (Battle Stories property, Âś 4): It was really a demanding time, but when I look back, it was one of the most rewarding 6 months in our relationship because we were able to get even closer and our friends all came to meet our needs and the work.

In this population of gay men, there is clear evidence of altruistic behaviors as they rallied to care for dying friends. These gay men felt some of these behaviors were just part of caring for those they loved. They jumped in to provide care with no apparent hesitation. Young gay men found themselves engaged in caring for others while also in a phase of life in which intimacy, the predecessor to generativity defined by Erikson and Erikson (1982/1992) was developing.

Finding 6: Gay Men in Midlife: Mortality and Transformation of Narcissism Mortality Kohut (1977) believed that adaptation to mortality is characterized as a narcissistic transformation within the cohesive self that translates into a calm state of mind, a state of acceptance free from conflict. Coming to terms with oneâ€&#x;s finiteness is an achievement along the narcissistic line of psychological development. Erikson (1950/1963) stated individuals in midlife with healthy development come to grips with mortality. Acceptance of mortality leads to a desire to leave a legacy, part of the motivation for generativity. There is concern for others, especially for the generations to come (McAdams, 2001). Results reported in Chapter IX, in the Thoughts on Mortality

166 property, from which all the quotations in this subsection are taken, demonstrate the capability of these gay men in midlife to accept mortality without fear, an accomplishment Kohut would define as narcissistic transformation.

Men in this study were asked specifically to talk about their reactions to the concept of mortality. Statements noting that mortality is thought about and related to as inevitable are reported: I don‟t think about it so infrequently anymore. I wonder how I am going to die. I am glad I don‟t know how and when, but I still wonder how and when.

It‟s never bothered me. If I die, I die.

You know none of us get out of here alive.

When I was 30, I thought of death less than I do now, when interestingly, I was living in New York.

This doesn‟t way heavily on my mind all the time. It‟s just in the process of being introspective. Periodically, I have these conversations with myself, but it is not overwhelming.

Death was acknowledged as inevitable, but men also related that they have had cause to relate to life differently: I guess I call into question the value of possessions. I think I feel more and more in a strange way, I feel more akin to the earth and its cycle. I see that as being more spiritual as opposed to being separate.

I‟ve had a great life. I‟ve enjoyed myself and even with the valleys. The peaks can be fantastic too.

What does all this mean? If I lusted after things all these years, what‟s the point of this? What‟s that, an intermittent existential crisis?

I did not encounter one participant fearful of dying. There were direct references to earlier loss: The odd thing about it, it [death] beats the alternative, I do definitely have that perspective. Tim died at 40. So many people died. You‟re alive. That is a big deal.

167 I live with more gratitude and the value of life.

I, by every right, I should be dead.

I feel like I am not so freaked out about death or whatever. I feel like I have had a little more exposure to it. I just don‟t, maybe that is just my own personality, but I don‟t feel so freaked out about it. I think you sort of have what time you have.

Gay men in midlife showed healthy adaptation to the idea of death and to their own mortality. Some directly referenced the experiences of loss from the AIDS years.

This finding concurs with findings by Hoffman (1979) in his study of parents confronted with death of their children. He found they accepted death and focused on life, thus exemplifying healthy adaptation to their mortality. Whether by virtue of being older or by virtue of confrontation with deaths of cohorts during the AIDS years, this study population of gay men demonstrated an ability to reflect on the meaning of life and the acceptance that it is finite. Kohut (1980) noted a vital factor in the healing of self in connection to adult trauma is the presence of selfobject support in the environment. For Kohut, failures or loss of selfobject supports can result in self defects that require therapeutic intervention. Gay men were confronted with massive loss. Yet, they have arrived at midlife showing healthy adaptation.

Wholesome Transformation of Narcissism: Additional Evidence Kohut (1966) stated that one of man‟s greatest achievements is his capacity to acknowledge his mortality. This is an accomplishment of healthy psychological development, a transformation of narcissism. Beyond man‟s capacity to contemplate his mortality, Kohut (1966) defined wholesome transformation of narcissism evidenced in the presence of humor, creativity, empathy, and wisdom. The gay men in this study

168 showed evidence of humor, empathy, creativity, and wisdom, as well the ability to contemplate their mortality. In Chapter IX, under the property Thoughts on Mortality, results support the contention of narcissistic transformation described by Kohut (1966) in these gay men. One quote stands out.

I don‟t want to die because of course my whole sense of what life is, is because I am here on this earth, which is true for everybody. If you die the whole world dies. But you know it doesn‟t happen that way. But of course it does (in my mind), because I am so important and lord knows I am going to burn in hell, but the parties we are going to have.

This quote was stated with humor and accompanied with laughter. The participant jokingly referred to his earlier narcissistic frame of mind, stating life for all ends when his life ends. He then noted that it does not happen that way. He had come to a point of wisdom. A transformation occurred. He ended with laughter, jokingly referring to the moral condemnation felt from religious and social groups stating that we (all gay men) will all end up in hell, “but what parties we will have.”

The exact impetus for such a transformation cannot be validly addressed as the finding is based on study results as opposed to dynamics obtained in clinical work, which would allow for deeper analytic investigation of the dynamics. Several different reasons for this transformation can be considered. One reason takes into consideration the experiences of multiple losses. Multiple losses created opportunity for internal transformation as loss promoted reflections on the meaning of life and death. This reflection could have enhanced capability for wisdom and developmental transformation.

It could be that caring for dying friends had fostered intimacy. Caring for others requires anaclitic behaviors promoting transformation in narcissistic development as the engagement in caring for others is an altruistic act. The evidence of transformation of narcissism found in this study population may simply be natural healthy development in

169 their personal life course. For Erikson (1959/1980) development of intimacy in earlier adult development allows for development of generativity. This population was confronted with intimate caretaking during the AIDS epidemic. They described loving, intimate adult relationships with their parents. Educators in this study expressed a dedication to the care of their students. Whether narcissistic traits existed and were addressed in earlier therapeutic work or organically developed by life experiences and within the context of rich selfobject milieu cannot be determined here, but these are possibilities.

The Problematic Position of Homosexuality and Narcissism Evidence of narcissistic transformation outlined above provokes commentary on the problematic argument within psychoanalysis on the etiology and nature of homosexuality. The argument began with Freud (1914), who defined homosexuality as narcissistic object choice and heterosexuality as anaclitic object choice. Due to the complexity of the arguments, the debate over the years since will not be fully outlined here. It is pertinent to note that a renewed argument began in 2002. Bergeret (2002), following Freud (1914), defined same-sex erotic desire as a narcissistic object choice, concluding the homosexual (or for Bergeret, the homophile) is characterologically narcissistic. Bergeretâ€&#x;s work prompted response. Phillips (2003) describes Bergeretâ€&#x;s conclusion noted above and refutes it. Roughton (2002) addresses Bergeret (2002), refuting the idea that homosexuality implies failure to evolve beyond the narcissisticphallic stage. Roughton (2002) argues that both heterosexuals and homosexuals exhibit

170 narcissistic object choice. Therefore narcissistic object choice is defined not by gender but by function.

It is not my contention that findings from this study provide any conclusive evidence in the argument. The debate over the dynamics of homosexuality in psychoanalysis over the years is a complex debate. Findings here do not refute the argument put forth by Bergeret (2002). Contemporary theorists debated the issue moving analytic theory away from pathologizing homosexuality (Roughton, 2002; Phillips, 2003; Shelby, 1994a). A comprehensive discussion of this complex issue is beyond the scope of this study‟s findings. The point emphasized in the findings of this work is that these gay men showed healthy psychological development. Kohut (1966) argued that healthy transformation of narcissism is exemplified in humor, creativity, empathy, and wisdom (section II, ¶ 33). Kohut (1966) also states, “Man‟s capacity to acknowledge the finiteness of his existence, and to act in accordance with this painful discovery, may well be his greatest psychological achievement” (section II, ¶ 18). Granted, study results are derived not from clinical analysis but from study interviews. Still, the results have validity within this population and the merits of a qualitative study. Results imply these men show transformation of narcissism. Results show in this population, creativity, humor, wisdom, calm acceptance of mortality, and concern for the younger generation.

These are seen following a common experience AIDS epidemic trauma. Implications of these results require further consideration in the debate of the etiology and nature of homosexual men. Additionally, it is of no minor importance to recognize this population of gay men shows healthy acceptance of the finitude of life, despite earlier experiences of trauma, including prior fear of annihilation by virtue of identification with a peer group

171 becoming ill and dying. Earlier experiences of death anxiety were present and apparently did not inhibit later stage appropriate acceptance of mortality.

This is a nonclinical population. It is also a population impacted by shared trauma, yet this population clearly shows evidence of carrying on in life with healthy development, while processes associated with trauma, that is, suppression and disavowal are present. There is evidence of wisdom, and humor, and empathy, and acceptance of mortality, all hallmarks of healthy midlife development.

Summary of Implications Gay men in midlife are leading happy, fulfilling lives, connected to partners, friends and family. Life was viewed as happy and bumps on the road were noted, but not included as a bump was the experience of trauma related to the AIDS epidemic years.

Prior threat to life and multiple losses were not outlined as obstacles to current happiness.

It was apparent that life continued to unfold for the participants in this study, leaving the experiences of the AIDS epidemic years behind, split off from conscious memory except for isolated recall of fragmented memories, devoid of emotion.

These men could remember the AIDS epidemic years with little difficulty. Some memories were immediately recalled, while others were recalled upon reflection secondary to participation in this study. Intense affect associated with loss from the AIDS epidemic years was initially absent for all participants, but to the surprise of some participants, it spontaneously arose. Some felt a sudden overwhelming tearfulness during the interviews. Others described the return of emotion upon reflection after the first interview. The manner in which participants recalled and reconnected to experiences and

172 emotions of the AIDS epidemic years is defining of their experience as traumatic. Some memories were suppressed and intense emotions had been disavowed. Simply by participation in this study, participants demonstrated a capacity to re-work trauma with very little effort. This re-working of the trauma was seen following interviews in which participants were simply asked to remember. It included mourning and re-organization of memory. Men in the study realized the experience of the early AIDS epidemic was lifechanging. It defined their personal history. In this study, in the process of soliciting memories participants reconnected with intense affect, and though it was painful, found themselves grateful for the opportunity to talk about their experiences in this study as they felt transformed by simply talking about their memories.

One of the significant experiences of trauma described by these gay men was the fear of annihilation. They all had some fear of succumbing to AIDS, simply by process of identification. The threat of death first encountered in the early years was obviously felt by those infected whether they fell victim to the virus or survived. But all gay men felt the jolt of early illness and deaths impacting the urban gay communities, and by identification, feared their own death.

These gay men, having experienced massive loss, and personal threat in the past all showed healthy developmental aspects of midlife, that is, generativity and acceptance of mortality. Life continued on for these men and was filled with social connections despite losses (some massive loss) in their earlier adult years.

Kohut (1980) defined adult trauma as the fear of the destruction of the self that occurs as selfobjects are lost in their environment. For Kohut, a vital factor in the healing of self in connection to adult trauma is the presence of selfobject support in the

173 environment. Gay men in midlife who lived in urban centers during the epidemic years lived through massive loss of selfobjects. By definition, they lived through trauma. This trauma included the anticipation of annihilation and losses of sustaining relationships.

The men in this study, despite earlier trauma and massive loss, adapted, sometimes rebuilding social networks, sometimes holding on to life partners. Some made significant geographic moves to rebuild life. They all cited relationships as one of the greatest sources of their happiness.

Development is seen in this population of men who have carried suppressed memories and disavowed affect. Despite the use of these defenses, participants established new relationships and their defenses did not preclude continued adult development. There is evidence of generativity, a hallmark of healthy midlife development. There is also additional evidence of healthy narcissistic transformation in this population of gay men as results include evidence of acceptance of mortality, along with evidence of creativity, humor, and wisdom Study participants underwent transformation in personal self-perspective after involvement in interviews and after reading through the results of the interviews. They recognized that they had experienced a piece of history that had impact on their selfnarrative. There was a new awareness of the meaning of their experiences now consciously recalled and organized in a context that includes feelings of sadness and loss.

Validity and Limitations of the Study Evaluation of qualitative research is arguably different than criteria applied to quantitative research. By quantitative standards, this study is limited by the fact that the

174 population is not a representative sample population. The 21 participants were volunteers solicited through fliers, word of mouth, and internet networking. Due to the limits of a small number of participants and the fact that this was not a randomly selected group, results cannot be generalized to the larger population. Straus and Corbin (1998) argue, “the usual canons of good science have value but require redefinition to fit the realities of qualitative research� (p. 266). Thus, evaluation of grounded theory studies such as this requires the application of different criteria.

Corbin and Straus (2008) suggest criteria for application in evaluating qualitative research. These include fit, applicability, concepts, logic, depth, and variation. In this study, member checking provided evidence that the results resonated with participants (See Chapter XI). This demonstrates that the results fit with their experiences. The results are applicable to this study population and possibly with other massively traumatized populations. The results outlined in Chapters V through Chapter X capture mental processes and describe depth in emotional responses. Within the results there is variation in the way participants wanted to talk about their experiences. Participants defined a variety of experiences which were categorized and described in the results.

The findings are applicable or useful in working with a specific population.

Concepts have been generated after defined analysis of results. The results are contextualized in history and within theory. The findings presented are logical and contain richness and variation, which meets the definition of depth defined by Corbin and Straus (2008). Corbin and Straus (2008) define additional criteria of, creativity, and sensitivity. Complexity of human life is described in this work. Questions were adjusted through the interviews to capture the nuances of experiences discussed in earlier

175 interviews. Interviews were also adjusted as participants unexpectedly ended up using the interviews for the purpose of debriefing that is participants not only connected with memory; they re-connected with feelings of loss and sadness. These feelings were unanticipated by participants. Participants had varied experiences with similar emotional reactions.

Creativity is demonstrated as new information is presented, bringing new understanding to the experience of a defined population. Sensitivity is also demonstrated as the results were collected in a consistent manner and analysis of the results drove this research.

Given the nature of this qualitative research, there is validity and applicability of this work. It provokes questions for future research and thereby accomplishes a goal of grounded theory studies.

Clinical Implications Clinical Work with Gay Men in Midlife Clinical implications of this study first and foremost bring enlightenment to work with gay men in midlife. The men in this study demonstrated healthy midlife development. Generativity and acceptance of mortality, hallmarks of healthy midlife development are evident in this nonclinical population. Thus clinically, when the therapist encounters failure in a gay man in midlife to demonstrate these attributes it cannot be assumed that the failure is a simply a facet of homosexuality by virtue of assuming homosexuality is a function of narcissistic organization. Assessment for

176 psychodynamic origins would go beyond any assumption that gay men are bound to be unhappy as they remain in a regressed state of narcissism.

Drawing from the results of this study, failures to show healthy psychological development for gay men in midlife observed in a clinical setting may be a factor of AIDS-related psychological trauma. Memory fragments from AIDS-years trauma have potential to intrude into the psyche, creating intrusive symptoms. Ornstein (1994) defines the need to integrate memory and disavowed affect in treating symptoms associated to trauma. The results from this study population do not provide evidence of symptoms within participants. These men all described happy lives. The findings are restricted by the fact that data was obtained by study interviews rather than in clinical treatment.

Though symptoms were not identified in the study population, results did support the finding that there is evidence of suppression and disavowal. Therefore potential exists for breakthrough of memory fragments evoking symptoms and /or inhibited adult development following adult trauma (Ornstein, 1994). Study findings inform the clinician of potential dynamics for treatment of gay men in midlife.

The Informed Clinician This study provides information for any therapist working with gay men in midlife regardless of gender, age, or sexual orientation. The study demonstrates that the early AIDS epidemic years were experienced as traumatic for this population of gay men, a factor that must be known to any therapist working with a man in this population. It is a necessary knowledge for comprehensive diagnosis and treatment. Goldberg (1994) addresses subjectivity of the therapist as a factor in treatment. The therapist is impacted

177 by theory and knowledge as well as subjective experience. Without acknowledging the experience of AIDS-related psychological trauma in treatment of gay men in midlife, diagnosis of problems secondary to trauma becomes impossible. Gay men in midlife seen in the clinical setting may have had experiences of massive loss similar to participants of this study. Any therapist gay or straight, lacking their own knowledge of this time period and the realization of the trauma of the AIDS years would lack necessary knowledge for diagnosis and treatment.

Within the gay community, younger gay therapists working with gay men in midlife likely lack detailed knowledge regarding the early AIDS epidemic. Some history may be known, but if it is not recognized that this period of time was traumatic, that it produced overall fears of annihilation and experiences of massive loss, the younger uninformed clinician lacks the knowledge necessary for assessment. Simply asking by asking the men in this study to talk about their memories, they reconnected to suppressed memories and disavowed affects. Thus they were also able to re-organize their personal narrative to include the horrific experiences of the past and realize they had been impacted emotionally even as they continued development into midlife.

The Midlife Gay Male Clinician: Confronting Personal Suppression and Disavowal The gay male therapist who is also in midlife potentially may encounter his own blind spot in assessment and treatment of other gay men in midlife. There is clear evidence that the men in this study had not connected the dots; that is, memories were present but not previously processed and organized in a cohesive narrative. Affect associated with the AIDS memories remained disavowed in a manner described by

178 Ornstein (1994) as evidence of a vertical split. Thus the gay male therapist with similar history and experiences of AIDS-related trauma is likely to be living with a similar vertical split. This can leave the midlife gay clinician incapable of seeing the need for assessment and treatment of the trauma as the maintenance of suppression and disavowal are potentially shared between therapist and client.

Implications of Healing the Split: Reconnection to Memories and Affect There is evidence in this study that participants recalled memories, organizing their fragmented memories in a coherent narrative integrating traumatic events into the self-experience. There is also evidence of reconnection to disavowed affect associated with loss incurred during the early AIDS years. Intense unexpected emotions emerged during interviews and were described occurring outside interviews secondary to study interviews. The experiences were painful yet welcomed as participants described a connection to their past that they now felt vital to maintain. In follow-up interviews the act of reading a narrative describing the experiences and emotions of the early AIDS years provided some participants with a new experience of locating themselves in context of shared historical events.

Life Course, Gay Men in Midlife, and Healthy Transformation of Narcissism The study set out to examine a midlife population of gay men. Life-course theory has examined the crisis of midlife (generativity vs. stagnation) using heterosexual populations. Erikson (1959/1980) early on defined generativity as an aspect of procreation. For those unfortunate persons who for whatever reasons did not procreate,

179 evidence of generativity is placed in productivity and creativity. Generativity is a result of healthy development that implies narcissistic transformation. Findings show the clinician various ways in which gay men demonstrate successful negotiation of the generativity versus stagnation crises defined by Erikson (1959/1980). Men in this study were involved in the lives of aging parents, caring for them and providing companionship. They worked and valued their roles as educators. They mentored younger gay men and showed concerns for the current generation of young gay men living without a healthy fear of AIDS. They volunteered with and donated to charitable organizations. Gay men are even involved in parenting. Thus when a failure to identify aspects of generativity is encountered in the clinical setting, the question would be why. This is not a factor of homosexuality. It is not what would be expected given the results from this study.

Gay men do enter midlife years with healthy aspects of psychological development. The clinician may not see usual evidence of generativity, and thus the clinician must recognize generativity is exemplified in different ways. Men in midlife may be observed to hold friendships with younger gay men. These relationships may contain an aspect of or be totally based on providing a mentoring role, thus demonstrating an act of generativity. The manner in which a man in midlife describes his career in teaching or the importance he might describe in helping his student population is evidence of generativity. Failure to procreate does not imply the lack of generativity.

Earlier Trauma and Capacity for Healthy Development This study population of gay men in midlife exhibits a capacity to live beyond adult trauma with evidence of healthy and productive development. Results contradict assumptions that AIDS-related trauma will cause debilitating symptoms. Social networks,

180 significant relationships, and productive and creative aspects of life all were factors in the lives of these gay men. Maintenance of social networks with other gay men allowed for satisfaction of twinship needs. There is an implication that such a rich environment provides necessary self-cohesion. Though symptoms were not a found in this study population, 10 participants were single, voicing concerns about remaining single and a desire to find a significant partner. What cannot be answered here is whether or not AIDS-related trauma impacts their ability to bond. This question would be ripe for assessment with these men in psychodynamic treatment.

In addition to the healthy facets of development, it is significant for the clinician to think about the fact that this study population transitioned despite prior adult trauma, carrying with them suppressed, fragmented memories and disavowed intense emotions.

Thus for this population of gay men in midlife, when symptoms related to AIDS trauma are diagnosed, there is a question of why. Why is there intrusion from the vertical split into the functioning of the individual? Could the AIDS-related trauma be just one experience of trauma for this person whose life may have been marked by earlier trauma?

All the men in this study identified the importance of social connections, partners, friends, and so forth. Could this be a missing aspect of a clientâ€&#x;s life, and why? These questions would be open for further clinical assessment. For this study population, maintaining a rich environment of selfobject functioning was a crucial factor in maintenance of healthy development. Knox (2003) and Auerhahn and Peskin (2003) defined functional aspects of defense. Defense protects the psyche from unbearable affect. Dissociative defenses maintain self-protection when unacknowledged trauma has been encountered. Suppression and disavowal for men in this study population acted as

181 functional defenses. Is there potential for symptoms when these defenses include isolative behaviors leaving the individual vulnerable to loss of self-cohesion as he would be withdrawn from a rich selfobject environment? For the clinician, reflection on this question can lead to diagnosis and necessary treatment.

Implications of the thesis proposed by Auerhahn and Peskin (2003) provide considerations for treatment. Simply by identifying and acknowledging that the AIDS epidemic was traumatic, gay men in midlife can reconnect to their memories and feelings and thus mourning and integration may be triggered.

Summary of Clinical Implications Findings provide the clinician with necessary knowledge in treating gay men in midlife. For this population of men, having lived an openly gay life in an urban gay community, the clinicianâ€&#x;s awareness of the early AIDS years as traumatic is vital for adequate assessment, diagnosis, and treatment planning. The therapist who himself is a gay man in midlife holds the potential to be blinded by his own dissociative defenses such that knowledge of the epidemic years by virtue of personal experience may not translate into recognition of the clinical implications. The implications for clinical work center on the ability of the clinician to hold knowledge that informs assessment.

Defenses of suppression and disavowal identified in this study population have been maintained over the last 15 years, with evidence that they have not inhibited healthy development into midlife. In addition, as defenses have functioned, it is possible that maintenance of these defenses have enhanced development. Beyond the defenses as internal processes necessary for healthy development, this population relied heavily on a

182 milieu of selfobject functioning. Significant relationships were maintained or formulated.

Failures to feel response from the heterosexual community and from the government added to the experience of trauma and the need for dissociative defenses, implying the possibility that treatment may start with a validation of experience. The AIDS epidemic is part of history. Its impact on gay men has not been adequately recognized either within the community of gay men or within the community at large. This study begins to scratch the surface, providing direction for clinical questions and future research.

Social Implications These results define the historical experiences of gay men during the early years of the AIDS epidemic as traumatic. In a follow-up interview, one respondent stated he wanted to have his parents read the final dissertation. He wanted them to connect with his experience. Repeatedly participants stated there was value in the results of this study being made public. The study found that within themselves, these men had not organized their memories and emotions in a manner that recognized their trauma. There is evidence that by the end of participation, either from interviews or from reading the results, participants now integrated memory and affect identifying their personal experience.

Society at large can draw from the results and findings of this work, recognizing that the failure to acknowledge and validate the experiences of gay men should not continue. The trauma is validated in this study, and it is important for society to acknowledge it and draw a lesson from the negligence of the past.

183 Future Research The midlife experience of gay men remains an inadequately studied field in lifecourse studies. This study provides insight into a specific group of gay men, opening up areas for further inquiry. Life satisfaction can be studied not just by self reporting, but by using quantitative measures of assessment. How the healthy aspects of midlife development are exhibited in this population is open for further research..

Defenses activated following trauma have been recognized as having functional qualities. Further research on adaptation to trauma can enlighten this perspective.

Specifically, further studies of AIDS-related trauma for gay men in midlife are called for to explore the concepts generated in this qualitative study. The findings here need to be studied using larger scale populations of gay men in midlife. Large-scale studies could look at the development of gay men see if the finding here that gay men developed despite prior trauma and use of defenses stands up to the test. Are there gay men in midlife who show issues in their developmental trajectory as a result of earlier trauma?

Ten of the men in this study were single. A larger scale study could look at this and define if there is any connection to these men remaining single and their experiences of massive loss during the early AIDS epidemic years.

Final Thoughts This study set out to investigate the lives a population of gay men using grounded theory methodology. Research bias was recognized and controls put in place in order to design a study that stood the test of trustworthiness. Methodology was carried out in a sensitive and consistent manner such that findings were derived from results. The data

184 obtained was richer than expected. The researcher did not anticipate that interviews would trigger mourning and integration processes in the participants. The early AIDS epidemic years were years of illness and deaths. Families, friends, partners, acquaintances, and society lost talented, creative, loving men. A specific population of gay men bore unique witness to this early viral attack on members of its family and community. Not only is it important to remember the loved ones lost, but it is important for those who lost to remember and grieve and continue on in life with an appreciation for the complexity of their experience.

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APPENDIX A

FLIER I

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187

APPENDIX B

FLIER II

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APPENDIX C INFORMED CONSENT FORM

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Individual Consent for Participation in Research INSTITUTE FOR CLINICAL SOCIAL WORK

I,______________________________________, acting for myself, agree to take part in the research entitled: Midlife gay men: An exploratory study of a cohort midlife population, survivors of the urban experience of the AIDS epidemic.

This work will be carried out by James N. Lampe (Principal Researcher) under the supervision of Dennis Shelby, Ph.D. (Dissertation Chair) This work is conducted under the auspices of the Institute for Clinical Social Work; 200 N. Michigan Ave., Suite 407; Chicago, IL 60601; (312) 726-8480).

Purpose The purpose of this study is to gather information on the midlife experience of contemporary gay men whose life history includes the experience of the AIDS epidemic. The analysis of this data will provide insight into the psychological experience of midlife gay men. The study will be reported in the dissertation work of the researcher (James N. Lampe).

PROCEDURES USED IN THE STUDY AND THE DURATION The participants are consenting to participating in three interviews with the researcher, each interview being forty-five minutes to one hour in length. The interview questions will focus on each participantâ€&#x;s life today as well as remembrances over the last twenty five years, since the beginning of the AIDS epidemic Benefits This study provides no direct benefit directly for the participants. This study will be beneficial to society, providing insight into psychological development of an adult population.

Costs The only cost to participants is their time and possible the cost of traveling locally to the researcherâ€&#x;s office. If parking fees are incurred by the participant, the researcher will provide reimbursement.

Possible Risks and/or Side Effects There is no physical risk involved in this study. There is no hidden agenda in asking questions during the interview. Some questions may elicit strong, negative, emotional responses.

Participants may interrupt the interview and/or opt not to respond to any question should they feel emotionally uncomfortable.

Privacy and Confidentiality

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Participantâ€&#x;s privacy and confidentiality will be maintained at all times. All recorded interviews will be erased after a transcript is typed. All data obtained from transcripts of interview will be kept locked in the researcherâ€&#x;s private files, along with all memos and notes associated with interviews. All data will be destroyed after a period of five years.

Data obtained in this study, along with analysis of the data, and reporting of its results will be part of the dissertation by James N. Lampe for partial fulfillment of a Ph.D. at the Institute for Clinical Social Work. Careful measures will be utilized at all times to protect the anonymity of all participants.

Subject Assurances By signing this consent form, I agree to take part in this study. I have not given up any of my rights or released this institution from responsibility for carelessness.

I may cancel my consent and refuse to continue in this study at any time without penalty or loss of benefits. My relationship with the staff of the ICSW will not be affected in any way, now or in the future, if I refuse to take part, or if I begin the study and then withdraw.

If I have any questions about the research methods, I can contact James N. Lampe (Principal Researcher) at 773-665-1380 (day and evening number) or Dennis Shelby (Dissertation Chair), at 312-458-9214 (day and evening).

If I have any questions about my rights as a research subject, I may contact Daniel Rosenfeld, Chair of Institutional Review Board; ICSW; 200 N. Michigan Ave., Suite 407; Chicago, IL 60601; (312) 7268480.

Signatures I have read this consent form and I agree to take part in this study as it is explained in this consent form.

_________________________________ Signature of Participant

_____________ Date

I certify that I have explained the research to _____________________ (Name of subject) and believe that they understand and that they have agreed to participate freely. I agree to answer any additional questions when they arise during the research or afterward. ________________________________ Signature of Researcher Revised 6 Sep 2006

______________ Date

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