On Coming to Terms with Death and Dying: Neglected Dimensions of Identity Work

Kent L Sandstrom. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.

During the past three decades, a growing number of studies have examined the challenges confronted by people diagnosed with life-threatening or potentially life-threatening illnesses. Many of these studies have focused on the psychosocial issues encountered by the terminally ill. In the process, they have revealed that some of the most troubling issues confronted by dying individuals include fears of social isolation and rejection; feelings of guilt, shame, anger, and grief; radical role changes; loss of future expectations and hopes; denial of death; and adjustment to physical and emotional devastation (Baider 1972; Furstenberg and Olson 1984; Oberfield 1984; Samarel 1995; Stulberg and Buckingham 1990; Stulberg and Smith 1988; Vachon 1998). Other studies, building on the observations of Elisabeth Kübler-Ross (1969, 1981), have highlighted the stages of adaptation the terminally ill usually pass through as they grapple with such issues. These stages include numbness and disbelief, denial and isolation, anger and resentment, bargaining, depression, and planning for the reality of death (Morin and Batchelor 1984; Moynihan, Christ, and Silver 1990; Nichols 1985).

In identifying these stages, researchers have attempted to formulate models that can be applied to the experiences of all severely or terminally ill people, often with the goal of helping these individuals and the clinicians who care for them. Kübler-Ross was clearly guided by these aims in developing her theory of the dying process. Inspired by conversations with more than 200 dying individuals, she crafted this theory not only to help terminally ill people understand their coping reactions but also to allow clinicians to recognize these reactions and intervene positively, particularly by assisting the dying in progressing toward a state of hopeful acceptance.

Although Kübler-Ross’s model has been useful to clinicians and dying patients, a variety of studies have revealed its flaws and limitations (Corr 1993; Corr and Corr 2000; Fox 1981; Hennezel 1989; Kastenbaum 1985; Weisman and Warden 1975). For example, empirical tests have demonstrated that this model mistakenly suggests that dying people move through sequential stages of coping when, in fact, they usually experience cyclical and vacillating processes of adjustment and adaptation, moving back and forth among responses such as denial, anger, and acceptance (Kastenbaum 1998). Studies have also shown that those dying may experience several of the “stages” identified by Kübler-Ross simultaneously. Moreover, researchers have reported that a number of dying people never go beyond the first two stages of adaptation identified by Kübler-Ross, and many feel apathy, apprehension, and anticipation as well as acceptance of death when they reach the final days of their lives (Weisman and Kastenbaum 1968). In some cases, the dying may also respond to their impending mortality with rage, guilt, fear, uncertainty, disbelief, dissonance, struggle, stoicism, or surrender (Shneidman 1984; Yedidia and MacGregor 2001).

Given the limitations of Kübler-Ross’s model (as well as similar stage-based approaches), researchers have formulated alternative theories of how people cope with dying and death. For instance, Kenneth Doka has devised an approach that applies the principles of human development to the end of life. Guided by these principles, Doka (1997) focuses on the dimensions of social, psychological, and spiritual growth that can arise for dying individuals. Doka also seeks to isolate and identify “the commonalities of human experience that emerge at the end of life, including the universal needs and opportunities that people confront as they die” (Yedidia and MacGregor 2001:808). In pursuing these aims, Doka follows in the footsteps of Kübler-Ross, striving to develop a broadly generalizable model that is useful to both clinicians and the dying.

In a related vein, Charles Corr (1995) has formulated a theory that emphasizes the universal tasks individuals must grapple with as they come to terms with death and dying. According to Corr, these tasks present themselves in four key areas: the physical, the psychological, the social, and the spiritual. Corr proposes that in the physical area, dying individuals must concern themselves with meeting their bodily needs (e.g., nutrition, hydration, elimination, obtaining shelter) and minimizing their pain or physical distress. In the psychological realm, they must grapple with the challenges of maintaining a sense of security, autonomy, and richness. To feel secure, dying persons must remain as free as possible from anxiety and fear. To feel autonomous, they must sustain a sense of control over their lives and key decisions. To preserve a sense of richness and vitality, they must have access to activities that allow them to feel satisfied or bountiful. In the third key area of task work, the social domain, dying individuals face a couple of major challenges. The first is to sustain and enhance the social relationships they value, and the second is to address the demands of surrounding social groups and organizations, such as families, clubs, churches, and governmental entities. Finally, in the fourth area of task work, the spiritual realm, dying individuals must grapple with the challenge of maintaining a sense of integrity or wholeness. They must also find a way to sustain a sense of hope.

In highlighting these areas of task work involved in coping with dying, Corr (1995) emphasizes that coping is an active process that consists of “efforts to manage what occurs in one’s life to achieve a livable balance insofar as it is possible” (p. 309). He also stresses that coping with dying is not merely a phenomenon that arises at the end of an individual’s life; rather, it is a process that encompasses all of a person’s life. It is also a process engaged in by all of the significant others who are drawn into the person’s experience of dying.

Corr’s task-based model of dying has several advantages. First, it avoids making claims that people go through stages of adaptation or that the dying process has a linear character. Second, it offers a holistic picture of how people cope with dying, considering not only their emotional states or psychosocial responses but also other important dimensions of their lives. Third, it has both universal and specific applications. It applies broadly to all individuals by focusing on the four primary areas of death-related task work. At the same time, it applies uniquely to each individual by focusing on the specific tasks that a person faces in coping with dying and how he or she addresses them. Fourth, the model recognizes the coping engaged in by all the people involved in a particular dying experience, including not only the dying person but also his or her friends, family members, and caregivers. In addition, it regards dying individuals as active agents who determine which tasks are important to them and how, when, or whether they will address these tasks. Finally, Corr’s model offers guidance to helpers and caregivers as they interact with the dying person. It proposes that they should be attuned to the tasks that the dying individual chooses to address and should focus their efforts on how to best help him or her in the completion of these tasks.

Despite offering several advantages, Corr’s framework shares a significant shortcoming with many other “psychosocial” theories of the dying process; that is, it fails to recognize or discuss some of the most important forms of identity work engaged in by individuals as they come to terms with death and dying. More specifically, Corr’s model fails to consider how and why many dying individuals alter their goals for self and fashion new, valued, and enduring identities—identities that enable them to sustain a sense of vitality, efficacy, and continuity in the face of death.

In an effort to address this gap in Corr’s model and the literature on dying, I focus the remainder of this chapter on the identity work that persons living with AIDS (PLWAs) engage in during the final phases of their illness career. Drawing on in-depth interviews with 31 PLWAs, I describe how they (a) build or rebuild vital and valued selves; (b) counteract the threats posed by debilitation, suffering, and dying; and (c) fashion and solidify identities that extend beyond death.

In exploring these themes, I highlight some of the most prominent identity-related challenges encountered by individuals grappling with life-threatening or potentially life-threatening health complications. I also consider the trials and transitions that shape the self-images and identity constructions of persons with AIDS, particularly as they come to grips with the threat of death. Finally, I examine how persons with AIDS fashion postmortal identities and sustain a sense of symbolic continuity as they enter the last stages of their lives. Through focusing on this dimension of identity work, I reveal how people with terminal illnesses construct enduring selves and futures that enable them to gain a measure of control and transcendence over death as an ultimate limit.

Reshaping Identity and Preserving Vitality In the Face of Death

After receiving an HIV diagnosis, individuals typically wrestle with issues of stigma and uncertainty (Sandstrom 1990, 1996; Weitz 1989, 1991). They worry about how, whether, or when to share the news of their health status with others and how to address the threat of devaluation it poses. They also worry about the unpredictable aspects of their HIV infection, such as when it might provoke serious symptoms, what symptoms or complications might emerge, what treatments will be available, and how both the symptoms and treatments will alter their lives and selves (Sandstrom 1998).

As their illness unfolds and its physical and social implications become more clear, persons with HIV/AIDS find that their concerns start to change. For many, the threat of stigma wanes, especially if they establish or solidify relationships with supportive networks of others. Most also discover that their struggles with uncertainty diminish. In fact, they begin to feel far more concerned about the certainties that accompany their health status—certainties such as the onset of problematic symptoms, the disruption of comfortable routines, and the shortening of their life span.

Sustaining a Vital and Valued Self

As they come to terms with the disruptions and losses provoked by their health condition, persons with AIDS, like others diagnosed with potentially terminal illnesses, reconfigure their lives and selves and search for ways to preserve a sense of vitality and self-worth. In the process, they utilize various strategies of identity work. One of these strategies is compartmentalization. When compartmentalizing their illness, persons with AIDS acknowledge its presence in their lives but downplay its salience for self, as Barbara (all interviewees’ names are pseudonyms) revealed when describing how she incorporated her AIDS diagnosis into her self-conception:

I don’t really think about being a person with AIDS, or having AIDS, on a day-to-day basis … I think of AIDS as being part of who I am but not as something that’s at the top of my list of identities. Instead, it would be pretty much toward the bottom. I’ll admit that I wear my “person with AIDS” button at times, like when I do educational talks at schools, but on a day-to-day basis I’m more likely to think of myself as other things—like a friend, a caring person, or a nurse.

Through compartmentalizing their diagnosis, persons with AIDS keep it at the margins of self and maintain a life beyond it. They find it difficult, however, to continue employing this strategy when serious health problems arise and impose constraints on their valued involvements or interactions. Under these circumstances, minimizing the salience of the illness requires them to stake their cherished images of self in the past. This, in turn, evokes an “emotionally divided self” (Denzin 1984), especially as they try to come to terms with the incongruity between their past images of self and a self currently immersed in illness. Greg touched on these themes when he remarked:

I find myself adjusting to, like, who I am now as opposed to who I used to be. You know, like I used to be a guy who was involved with all this stuff and a leader in the community, and so on. And now I’m not. I don’t have the energy to do that anymore. So now I almost think of myself as like a couple of different selves—and this, being sick with AIDS, is an other self.

Given the difficulties that can arise in compartmentalizing their illness, PLWAs often employ a second form of identity work: embracement. When engaging in embracement, they build or sustain a valued self by highlighting the unexpected “blessings” that have resulted from their illness (Sandstrom 1990). For example, some individuals emphasize how their diagnosis has motivated them to make positive changes in self. As Carrie observed:
I feel like AIDS has been sort of a blessing because, well, it’s helped me to grow a lot as a person. I’ve come out of my shell emotionally and I’ve grown a lot spiritually. I mean, it’s ironic but because of AIDS I’ve learned how to enjoy life and enjoy people … It’s been a very positive experience for me. I just feel so much better about myself now. You know, I’ve come to acceptance with AIDS and with who I am. Before becoming infected, I had no self-esteem, you know, and now I’m okay with who I am. I can relate to other people in a more genuine way. I don’t have to try to pretend to be somebody else or to make somebody else happy. I can just be my own person.

Others point out that their illness has been a gift because it has shown them how much their partners, friends, or family members care about them. Still others stress how their illness has been a blessing because it has led them to reflect more deeply on the meaning of their lives and to clarify their goals and priorities. For instance, when discussing the effects of his diagnosis, Curtis said:

I think it has forced some changes. I think I’ve become a little more focused about things on a daily basis and less apt to waste my time with unnecessary anger, you know. And I just think that I’ve eliminated, uh, a lot of things that I don’t need to deal with. It’s helped me to set priorities, you know. I’m better able to sort out what’s really important and what isn’t. I think that I’ve changed in that respect.

Another way in which persons with AIDS highlight the benefits of their illness and preserve a sense of selfworth is by reexamining the significance of previously cherished involvements, such as their sexual involvements (Weitz 1991). As their illness unfolds and triggers health complications, many PLWAs experience declines in sexual interest and activity. In turn, they place greater emphasis on nonsexual interactions and relationships (Sandstrom 1996). Thus, rather than assessing their value or attractiveness in terms of their erotic activities or involvements, they accentuate the new and deeper forms of intimacy and self-worth they can realize through nonsexual friendships.

In addition to relying on embracement, persons with AIDS frequently sustain or rebuild valued selves by engaging in strategies of empowerment (Kayal 1993; Sandstrom 1990, 2000). One of the more common ways they do this is by participating in AIDS-related education or advocacy efforts. Through speaking at schools or churches, facilitating support groups for persons living with HIV, serving as volunteers in AIDS service organizations, or engaging in lobbying efforts, they challenge stigmatizing constructions of HIV/AIDS and assert their right to define what it means to be a person living with the disease. They also derive feelings of efficacy from their related accomplishments in the “war against AIDS and AIDS-related stigma.”

Finally, those individuals who have lived with AIDS for a decade or more may gain a sense of empowerment and self-value from being “long-term survivors.” On one level, they can derive feelings of pride and accomplishment from having endured the trials and tribulations of life with AIDS. On another level, they can bask in the recognition and admiration they receive from others because of their ongoing survival. Yet long-term survivors also discover that their persistence in the face of AIDS poses threats to self. As they outlive friends or acquaintances with the illness, they wrestle with troublesome feelings of “survivor guilt” (Lifton 1967). As Jay noted:

You know, you watch others die and you can’t help but think, “Why am I still alive?” I mean, I try to say, “God just has a different plan for all of us, and it’s my plan to be here.” But it’s hard to get around that—the survivor guilt. It does pop up a lot and I can’t help but say to myself, “Why did that person die, but not me?”

In addressing this question and resolving their related feelings, long-term survivors often attribute their longevity (and others’ deaths) to fate or other uncontrollable factors. For example, Neil remarked:

I feel proud of the fact that I’ve survived but I feel that it was still totally beyond my control anyway. I don’t think that people who died sooner, you know, did anything wrong. Mostly I don’t think it has anything to do with what they did or didn’t do. It’s just because, you know, they got something and they died. Um, so I see it [survival] as something people don’t have a whole lot of control over. And I see myself as just being lucky.

Through adopting such an outlook, long-term survivors can alleviate feelings of survivor guilt and protect themselves from accepting too much responsibility for their unfolding health situation.

Coming to Terms With Serious Illness, Suffering, and Dying

As their illness unfolds and provokes symptoms such as chronic pain, nausea, fatigue, neurological problems, and opportunistic infections, PLWAs are confronted with bodily evidence that challenges their visions of themselves as vital and healthy persons and, correspondingly, deters them from using identity work strategies that highlight the beneficial aspects of their illness experience. As a result, they often turn to other adaptive strategies that allow them to sustain a sense of control, vitality, and self-value.

One of these adaptations is to become more absorbed in the present and avoid thoughts of the long-term implications of their health problems. Through recasting their visions of the future and living more fully in the moment, persons with AIDS derive a greater sense of control and find new sources of personal satisfaction and fulfillment. Many start to see and appreciate “the little things” happening around them each day, thereby anchoring themselves in what Charmaz (1991) describes as an intense present. In the process, they discover a revitalizing sense of joy and transcendence, as Ryan conveyed:

When I got really sick and truly realized that I had a limited amount of time left to live, I started to look at things differently. All of a sudden each new day was precious to me—it was a gift that offered special surprises. I started to see and experience each moment as sacred, at least in some respects.Like others grappling with serious or life-threatening illnesses, PLWAs find that living in an intense present leads them to experience not only a rejuvenating sense of joy, vitality, and transcendence, but also an enhanced sense of urgency (Sandstrom 1998). As they strive to “make each day count,” they feel more compelled to take risks, explore new vistas, build new or closer relationships, tie up loose ends, and take advantage of reasonably good health while it lasts. In many cases, they also feel motivated to accomplish something socially meaningful while they still can. For example, when reflecting on how AIDS-related health complications had affected his visions of and goals for the future, Todd remarked:The thing it’s focused me on the most, one of my concerns, is that I haven’t made a dent in the world. And so I’ve decided to do some advocacy things, like starting an employee resource group for gays and lesbians at my company. I’ve started a group now. And I’ve gotten on the local diversity council so I can train people on all aspects of diversity. And that’s helped me a lot—it’s helped to take the focus off the fact that I might be dying and it’s made me feel like I’m making a contribution to the world.

Nevertheless, although a declining health situation can give persons with AIDS greater motivation to seek new ambitions and embrace new identities, it can also make it difficult, if not impossible, for them to do so. As a result, PLWAs may decide to pursue more proximate and tangible goals for self. Through realizing these goals, they can sustain a sense of efficacy and self-worth, as Jim described:

I set goals that I can meet on a daily basis. I make it a point to do that now, even though it’s hard because of my energy level … I try to do something outside the house every day—weeding, gardening, painting, or cutting grass. That’s a requirement for me—it forces me to get up and get dressed. And when I’m done weeding or whatever, I feel like I’ve accomplished something worthwhile.

If their health deteriorates to the point where it becomes difficult to attain even small goals, PLWAs worry about losing highly cherished bodily capacities, such as their ability to see, walk, think clearly, drive a car, and engage in sexual activity. Above all, they feel concerned about losing their autonomy and jeopardizing their relationships with loved ones, particularly as they become increasingly dependent on others. To alleviate these anxieties and enhance their sense of personal freedom and control, many PLWAs make arrangements that specify who will care for them and how they should be cared for if or when they become incapacitated. Some make arrangements for their most intimate others, such as spouses or lovers, to serve as their primary caregivers. Others plan to receive caregiving assistance from a variety of people, including nurses and hospice personnel as well as family and friends, so that no one individual will feel burdened or resentful. Ginger revealed the attitudes of those embracing this approach when she remarked:

It’s a huge responsibility for one person—to take care of someone when they’re really sick and dying. I know that because I took care of my husband in that situation. But, you know, I’m not going to expect anyone to do that for me. I’m trying to set things up so a bunch of people will be involved. That way nobody will have to carry the load alone.

In addition to planning for their future care, persons with AIDS, like others who are terminally ill, take a number of other steps to enhance their control over the process of dying. For instance, some make plans to end their lives if or when symptoms progress to the point where they have virtually no hope for recovery. More frequently, however, persons with AIDS exercise control over their dying process by writing up advance directives for their end-of-life care or assigning durable power of attorney to individuals they trust to carry out their wishes.

Yet another way that PLWAs derive a sense of control over their dying and death is by focusing on the recent advances that have taken place in HIV-related medical treatments. They may point to the health-related comebacks they have experienced as a result of taking antiretroviral drugs or drug combinations. They may also stress the continued progress being made in the development of new and more effective medications, as Corey illustrated when he remarked:

It’s just a matter of getting the right meds, you know. I was just reading the paper the other day—they’re working on meds that operate differently than the protease inhibitors. I guess they’re more of a block to the virus. And, you know, even if those meds don’t work out, my doctor says there are 14 agents out there now and I’ve only used 4. And if they can find the right combination then I’ll be okay—find one that works for 2 or 3 years, then find something that works for another 3 years. By that time, they might have something else that works for 2 or 3 more years. That’s the attitude I’m sticking with—it’s the attitude my doctor gave me from the beginning.

Transcending Death Through Building a Valued Postself

As dying individuals come to terms with their prospective mortality, they commonly try to make sense of their lives and to sustain a sense of personal continuity, often through emphasizing those features of self they want others to remember (Unruh 1983). They also strive to gain a measure of control over the last chapters of their lives and over their postmortal future (Charmaz 1991; Marshall 1975). This struggle for control becomes closely linked to their struggles for meaning, vitality, and continuity (Sandstrom 1998). As Victor Marshall (1980) has observed, by effectively legitimating or making sense of their personal histories and prospective deaths, terminally ill individuals can gain an enhanced sense of control. Indeed, through giving redemptive meaning to their lives and deaths, and through defining death as an opening to another life and identity, the dying can gain mastery over death as a final limit. That is, they can transcend death, at least on a symbolic level (Becker 1973).

One of the most prominent ways in which people with terminal illnesses transcend death is by constructing what some scholars describe as a “postself” (Lifton 1967; Schmitt and Leonard 1986; Shneidman 1973, 1995). As Shneidman (1995) posits, the “postself relates to the concerns of living individuals with their own reputation, impact, influence after death—those personal aspects that still live when the person himself does not” (pp. 455-56). Through building and embracing a viable postself, dying individuals can sustain a sense of hope, esteem, and vitality in their daily lives. They can also solidify and preserve valued identities and assure themselves that their lives have had or will have lasting meaning and importance (Sandstrom 1998).

Like others dealing with the prospect of death, PLWAs often seek to anchor important identities in a postmortal future. Some do this by devoting extra attention to their interpersonal relationships in the hope that after they have died they will be remembered as a “special friend,” “loving parent,” “caring colleague,” or “wonderful partner.” They may also try to solidify these and other favorable identities by writing letters, poems, diaries, or memoirs that they plan to pass along to relatives, friends, or the wider public. In crafting these autobiographical narratives, they document and accentuate the pieces of personal history for which they wish to be remembered.

Along with these strategies, many PLWAs anchor a postself in the enduring contributions they have made through their labors as nurses, counselors, educators, writers, artists, clergy, or businesspeople. In some cases they also try to leave a legacy through their accomplishments as leaders or participants in gay or HIV-related advocacy efforts. For instance, Rachel and Lee stressed the impact they had made through confronting homophobia and promoting HIV-related support programs in the small towns where they had lived. Others emphasized how they had made a lasting difference through their HIV/AIDS education efforts, as Ryan noted:

The biggest legacy I’ll leave, I think, is the work I’ve done in AIDS education. The local media, like the TV station and the local newspapers, they know who I am. And most of the people in this city know who I am. And there’ll be nice things written about me when I die—but, you know, above all, I think they’ll stress the role I played as an educator. That’ll be my mark—that I taught a lot of people around here to see that AIDS wasn’t a plague or a punishment; it’s just a disease, and it doesn’t discriminate.

As they come to terms with dying, many persons with AIDS anchor postmortal identities not only in the legacies they will leave behind, but also in religious or metaphysical beliefs that they will live on spiritually (Sandstrom 1998). Several of the PLWAs I interviewed did not conceive of death as the end of existence; rather, they saw it as “a gateway to a new realm of being.” Some thought of this postmortal realm in traditional Christian terms (e.g., as heaven). More commonly, however, they embraced Eastern or alternative religious philosophies that emphasize the continuation of a person’s “life force” after death, either in an ongoing cycle of death and rebirth or in a journey of self-discovery. Most important, belief in an afterlife enables persons with AIDS to sustain a sense of hope and continuity regarding their present and future. Through drawing on this belief, they can build or preserve an essential sense of self and anchor it in a future beyond death—a future that seems more pleasant or promising than the present. This gives death a less menacing meaning. Instead of representing the cessation of self, it is defined as an opening to new experiences and, implicitly, to an enhanced or transformed self.

Finally, although most of the individuals I interviewed did not embrace or draw upon traditional Christian views when articulating their images of an afterlife, a few did employ Christian imagery in their efforts to immortalize the self and sanctify their experiences as persons living with AIDS. For instance, Jay, Greg, and Nancy emphasized that PLWAs have a crucial spiritual role to play in the larger society. They saw people with AIDS as “modern-day prophets” who need to “spread the word” to others about the signs of “planetary illness” emerging around them, such as war, homophobia, racism, poverty, and environmental destruction. Others emphasized similar themes when stressing how they were called to educate others about the broader meaning and implications of AIDS. As Don described:

I’ve lived with AIDS for years now and I feel like, um, I’ve got something important to say … I feel like I’ve got a mission now—a mission to teach others about what AIDS really means. I tell people that AIDS really stands for “Am I Doing Something?” Am I doing something to change things? Am I doing something to make the world a more compassionate place? Those are the questions we need to ask if we want to stop the spread of AIDS and HIV.

Through embracing a sense of special mission, persons with AIDS can build revitalized selves, legitimate their unfolding biographies, and alleviate some of the painful or troubling feelings evoked by their health condition (Sandstrom 1990). They can also connect their illness experiences to larger religious meanings and social dramas, thereby granting these experiences a redeeming, significant, and enduring purpose.

Conclusion

Much of the literature on the dying process focuses attention on the psychosocial adaptations and tasks engaged in by persons with AIDS as they cope with the prospect of death. Although this literature offers helpful insights into the emotional states that dying individuals experience, the areas of task work they address, and the dimensions of growth they can realize, it largely overlooks how dying persons interpret their situation and reshape their lives and selves in light of their interpretations. As a result, it fails to consider some of the most central identity-related challenges confronted by people as they cope with dying, such as how to sustain a vital and valued sense of self, particularly when dealing with debilitating or life-threatening symptoms.

In recent years, thanatologists have become more receptive to approaches that focus on the perspectives, self-stories, and lived experiences of dying individuals (Kastenbaum 1998). These approaches have relied on ethnographic interviews and inductive strategies of data analysis (Sandstrom 1990, 1998; Yedidia and MacGregor 2001; Zlatin 1995). As a result, they have accentuated the narratives, life themes, and identity constructions drawn upon by dying persons as they come to terms with their situation. Guided by this approach, in this chapter I have highlighted the identity-related narratives and strategies that persons living with AIDS use to build or preserve valued selves. In doing so, I have portrayed how they derive a favorable or vitalizing sense of self from their intimate relationships, personal accomplishments, and long-term survival, as well as from identity constructions that highlight the beneficial and empowering aspects of their illness experience. I have also revealed the strategies that PLWAs use to sustain a sense of control, value, and continuity as their health declines and the threat of death looms larger. Drawing on their personal narratives, I have shown how individuals with AIDS, like others coping with dying, strive to build and affirm viable postselves, or identities that will endure after their deaths. They link these postselves to the legacies they will leave behind through their creative endeavors, community involvements, work accomplishments, and personal relationships. In some cases, they also anchor postselves in visions of an afterlife where they will be liberated from current limitations and realize transformed or enhanced selves. Ultimately, regardless of how they construct and embrace postmortal identities, persons with AIDS gain a measure of control and transcendence over their prospective deaths by doing so. They also derive a sense of hope, vitality, and continuity that helps them in their struggles to cope with the daily ramifications of their illness.

In addressing these themes this chapter refines and extends the literature on the dying process, particularly by demonstrating how and why dying individuals construct identities not only in terms of their prospective earthly futures but also in terms of a postmortal future. Through making this contribution, the chapter draws attention to an important but relatively neglected dimension of the lived experience and identity work of people diagnosed with life-threatening illnesses. It also suggests the need for further research.