Selections From Being Positive: The Lives of Men and Women With HIV

Being Positive

From Chapter Thirteen: "HIV and Beyond"

Recently a friend who lives in the country by the ocean pointed out a house -- a cream-colored gingerbread Victorian with white wooden doilylike trim -- across the street from her. Its small front porch overlooked the bay and then the ocean beyond. In the twilight the horizon of sea seemed to stretch on forever. "A young single man bought it last year," my friend explained. "He worked on Wall Street and said he had always wanted to have a house by the sea. The neighbors all invited him over and found him very nice. A few months ago though, he suddenly died of AIDS. We all thought, 'What a shame. He finally saved up enough money to buy the house and then he had to die.' "

But as a result of these interviews I saw this situation differently. I assume that when the young man bought the property he knew he was HIV positive and had a limited lifetime. It was sad that he died, but I sensed that before he did he had managed to do something he wanted.

The narratives in this book allow us to see life from these patients' own perspectives, not simply from our own. The stories proved more powerful than I had anticipated, enabling us to enter these individuals' worlds. As I look back, I realize how much I learned from these men and women. In retrospect, I had started out with several assumptions -- not all clear to me at the time -- about psychological distress, self-change and narratives.

I had expected far more persistent distress and depression caused by the illness, as I found in the clinic. Suicidal thoughts do continue to surface. And HIV-infected men and women face a tenuous balance between life and death in themselves and others. In addition, they face rejection, stigma, and pain from multiple sources around them. Yet these tales display courage and persistence in the face of such odds, and teach us much about resilience -- how people from even disadvantaged backgrounds find strength and respond when pushed to the limits of physical and mental endurance.

Individuals come to terms with these stresses by finding meaning in the illness and in their lives. Victor Frankl, in his book Man's Search for Meaning, drawing on his experiences surviving Auschwitz, wrote that human beings need purpose. Frankl quotes Nietzsche: "He who has a why to live can bear almost any how." Faced with widespread annihilations of themselves and others around them, the men and women interviewed here seek a larger significance to their lives. This study illuminates the range of approaches they use, demonstrating not only that people seek meaning but exactly how they find it.

Individuals find strength through HIV-land, spirituality, volunteerism and family. I was surprised that traditional values such as religion and family prove as crucial as they do. Yet patients follow these broad patterns in individual ways, shaped by personal background and experience. Survival itself becomes a creative endeavor as men and women grapple to find answers that work.

Through these broad patterns they are able to integrate illness and mortality into their lives, accepting death not just intellectually but experientially, and preparing to deal with it when it arrives. They struggle to surrender myths -- even if unconscious -- of immortality, and to find something to live for. I had not imagined the depths of anguish nor the heights of wisdom and insight they achieve -- the troubles they had encountered in their lives but are now able to confront and discuss.

By acknowledging the possibility of death, many patients now develop an increased appreciation of the present, of the life that remains. They realize they had taken life for granted and now have stopped and changed. For me personally, they urge a message akin to Seneca's: live each day as if it were the last and hence be prepared for, rather than frightened by death, whenever it may arrive. These narratives thus affirm human potential and strength.

The quest for meaning extends across differences in gender, race, sexual orientation, class, and education. At first I was surprised that even those deeply embedded in the worlds of injecting drug use, who had sacrificed their lives to their addiction, still sought purpose and dignity. Much of society objectifies drug users as "other," making this group easier to ignore. Yet these stories show them as struggling people with feelings.

Spirituality proved far more important and pervasive than I had foreseen. Higher powers provide not just connectedness with a future after death, but a sense that despite rejection by other people, God is accepting and understanding. Spirituality also offers an explanation for "why me" and a way of compensating for perceived past misdeeds.

These men and women strive to place themselves in the larger moral cosmos. Their role in getting infected -- even if accidental -- conflicts with their need to see themselves as morally blameless. As a result they enter a particular place no longer on the familiar moral terrain they had inhabited earlier. They now try to establish and justify in larger terms their actions and continued lives. They seek to do good and volunteer -- not just as a way to achieve symbolic immortality but as a response to moral promptings.

On the one hand these findings parallel in many ways those of Robert Jay Lifton in his studies of Hiroshima and Nagasaki. In both instances, individuals sought connections through family, religion, and "experiential transcendence" (i.e., through drugs and, to a lesser, more transient extent, sex).

Yet instructive differences arose as well. The men and women here seek to adapt not only to death but to a range of social problems. Death in America also differs from that in other cultures. In Japan, individuals more commonly sought connection to "nature" -- the sense that trees and grass would continue around them even after they died. The atomic bomb had destroyed plants as well as humans, and fear spread that the bomb's effects on foliage might linger. Works of nature hold particular importance in Shinto beliefs and in traditional Japanese culture.

Nor did an exact equivalent to HIV-land arise in the situations Lifton described. Family and community played vital roles in traditional Japanese culture that merely continued. But in HIV-land, many individuals, estranged from their families, look to create a new community to replace social networks now lost.

Numbness, found by Lifton among individuals directly affected by massive death, emerges from HIV more among the uninfected -- the rest of society. Patients with HIV minimize or reconceptualize the disease, bur rarely feel numb. A blood test that doesn't otherwise alter one's experience of one's body can easily fade from consciousness. Many individuals describe feeling "numb" only in the first few minutes or hours after testing positive, and then deal with the fact of infection in other ways -- though some patients then minimize their infection. But widespread death from HIV induces numbness from the public at large who fall into indifference, pleased to hear of treatment advances, but of little else concerning the epidemic. In short, HIV, while in some ways resembling other instances of massive death, also differs substantially, given in part the cultural context and public perceptions of the epidemic.

The Biology of Self

HIV transformed lives far more than I had expected. In response to feelings of shame and the threat of death, individuals reexamined and remade their inner as well as outer worlds. Patients radically shifted their identities and purpose. George Sullivan and Wilma Smith, for example, came to embrace the illness and to refer to themselves, respectively, as "HIV George," and "HIV Wilma." In our identity-conscious age, self-definitions have become more fluid. Still, self-change, though necessary for personal growth, remains difficult. Successful people seem particularly good at it, yet HIV has impelled many otherwise seemingly ordinary men and women to grow in extraordinary ways.

HIV illustrates how notions of self become constructed and altered. Conversion experiences, in earlier centuries viewed in religious terms, can now result from illness. Changes in the outward body can affect the inner self as men and women make sense of their ailments and mortality. Infected men and women construct not only their illness but themselves as ill, seeing themselves not as patients but as part of a community through which they create an identity. Thus, members of HIV-land prefer to be called PWAs instead of AIDS patients. They try to see HIV as a nondisease that affects nonpatients who are not "infected by," but are only "with" the virus.

Since the last century the self has been framed in psychological terms by Nietzsche, Freud, and others, and viewed as amenable to change through psychological interventions such as psychoanalysis. Recently, however, that paradigm has been challenged. Alterations in self brought about by pharmacologic agents such as Prozac have been one part of this shift, but the stories presented here illustrate self-transformation occurring also as a result of disease. To become "HIV Wilma," for example, suggests the emergence of a new identity. The mechanisms may be psychological, but the impetus to change is biologic.

To adopt an identity because of a traumatic illness raises profound questions about the parameters and definitions of self in the first place. Freud never addressed the notion of new identities forming out of social or medical upheavals. Yet the HIV epidemic offers evidence of such shifts. Illness, along with the culture of origin and of career can profoundly shape self-concept in ways not examined by Freud.

At the same time HIV illustrates how culture frames and mediates such identity changes. HIV-land provides both a language and a social order for molding such new identities. Homosexual men, for example, in coming out as gay and as HIV positive, enter subcultures that then help influence everything from styles of clothing and leisure activities to anticipated life spans.

Yet not all aspects of such transformation are coveted. While former injecting drug users praise beneficial aspects of being infected, many gay men dissent. Disease can raise or lower social status. Still, some gay men, such as Kerry Musgrove report that after being "lost" much of their adulthood, HIV has helped them find purpose.

Although the lives of both gay men and drug users have often improved, differences clearly remain. Many gay men had struggled hard for decades in difficult fields, building careers that now must be abandoned. Yet even many of these men readily cite lessons they have learned, the grace and wisdom they have attained, and the appreciation of aspects of life they have previously overlooked.

From Chapter Five: "Flowers and Fruits: Connections to Nature"

Many of those with HIV seek to connect to nature as a way of sensing the implicit hand of God. Nature offers consolation and larger order. Leonard Barber in Westchester reported, "For the last three years, I've been involved in a garden design business. The therapeutic aspects of gardening are clear: simply doing, being active. Though gardening design is very long term, the actual practice of horticulture is very immediate, with concrete physical progress that's very helpful. If my task is deadheading five thousand irises, I just do the job and it's done, which is very satisfying. In the meantime, my mind can go off and think about anything it wants.

"Gardening is also useful in thinking about HIV because making and keeping a garden is about orchestrating death and dying. All plants have a life span. Annuals are purely seasonal, but perennials die at different rates. So making a garden is all about coordinating life: blooming, flowering, and fruiting. I have to understand how and when plants die and what to do to make sure that the garden as a whole continues. I've got to accommodate all that dying. There's constantly going to be dying. I have to think in terms of decades. If I start a garden of any size this spring it will be at least five years before I know what mistakes I make now. I might die before it does. To work with big trees, whose life spans are hundreds of years, I already have to project myself into a world in which I no longer exist. So I've developed a certain detachment from the results of my actions. If I can detach myself enough, I don't care that I'm doing something that won't come into it's own until forty or fifty years after I'm gone. It's really just a matter of scale. If I die in five years, I don't get to see what I would have in twenty."

Nature can provide evidence of a higher power. Olana Ramirez said, "Yesterday evening I looked at the sky. It was a beautiful sunset, orange and purple. When I look at something like that, I know there's got to be something greater to create so much beauty out there. Man can't create that. So I have a lot of faith in a higher power. It's blind faith, but it beats no faith at all.

"Now, I pray every night. I say, 'God.' The first part I say in Spanish because that's the way I learned it when I was in church. I'll start talking like I was talking to a person. Sometimes I ask Him to forgive me for being weak. In a way I'm glad I'm HIV positive because it has made me see and appreciate a lot of things. I never noticed when it was going to rain, or the sky was beautiful, or the evening when the sun goes down. I thought drugs were it. I didn't need anything else."

Olana also sees evidence of God and life continuing after death. "What fascinates me is how the body is built. I've seen videotapes about the immune system fighting, and it's beautiful. I feel joy when I see it. God made us perfect. He made one little cell to send a message and another cell to go fight, and they communicate to one another. The eyes see, and the liver filters things out. When I think of things like that, I'm grateful that we have the ability to fight. Scientifically it's incredible. Would God create something so magnificent just to live a little while and die and be buried and that's it? There has to be something else. I'm put here for a purpose. God has something else planned for me. I don't know what.

"I don't believe I'll come back as a bird or nothing. But I always had the sense that this is just one part of my life. Nobody builds anything so beautiful, so intricate, and just throws it away. That's ridiculous."

Nature provides a sense of order in the face of chaos. Roy Gifford: "When I got totally frustrated the other week, I tore my fish tank apart and redid it. I couldn't move furniture around. My roommate walked in late in the evening, and said, 'You must have been upset because you rearranged the fish tank.' I took everything out -- all the stones and stuff -- and relandscaped. I felt, 'There: life is reordered.' I don't have access to my other old ways of feeling balanced. In the past, when I had a car, I would drive to certain places, like up a hill, and just sit and look at the river. Or I'd go to a spring. I had favorite places. I still take walks -- to no specific place. Just wherever the spirit goes. I forget about whatever upsets me, leave it behind or work it through."

Nature provides a sense of connection to the hereafter. As Jenny Singer said, "When a person knows they're going to die, they appreciate nature. I look at the clouds and the birds more. I go sit out on the porch at night and look up at the stars, and think, 'This is beautiful -- the human body, the stars, and the leaves.' Nothing dies in this world. A tree loses its leaves, but they go on to become something else. Everything is part of a cycle. A supreme being definitely put all this together. I look up and see the sky and feel I want to be there one day. I didn't even think about death before HIV."

Nature serves as an escape. Jenny added, "Sometimes I just walk down by the river from 200th Street down to 125th Street, and simply keep walking. Wherever, whatever, it doesn't matter. The water comforts and calms me. I look at the sky just to put my mind in a state that I forget everything until I have to go back home. I also like the sound of water running. At home, I turn on the faucet and just sit and let the water go through my hand, listening, like when it rains."

Spirituality can reduce the threat of death and alleviate feelings of rejection and isolation by making one feel accepted by God, and an integral part of the larger, ongoing universe. Thus spirituality counters the threat of physical death and present and future social annihilation. Beliefs in a higher power serve other functions as well, providing a sense of order, and an increased appreciation of the present. Individuals choose spiritual beliefs from a range of traditions and incorporate a variety of notions about communication with God -- afterlife, Apocalypse, and physical healing. Nature too can provide order, escape, and evidence of God's existence. Yet not all who seek spiritual solace through these means find it, due in part to feelings of depression and past experiences with religion.

Issues of responsibility also press forcefully through these narratives. Given prior moral and religious beliefs, individuals have a strong need to feel innocent. Most come to see God not as punishing but as forgiving and providing strength. Spirituality also assuages guilt about the past. Those who don't view HIV as God's will, often see it as fate -- if not a moral judgment, a logically probable outcome. Many also seek to hold others partly accountable for the infection or its consequences. Spirituality and morality help to address issues of responsibility and fate, and offer hope.

Robert Klitzman is assistant professor of clincial psychiatry at Columbia University. This is his third book.

From Being Positive: The Lives of Men and Women with HIV, by Robert Klitzman. Reprinted by permission of Ivan R. Dee, Publisher, 1-800-462-6420

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