Between Two Worlds: Living with AIDS in the Church

There is something in AIDS to offend everyone. Social conservatives are appalled by the sexual licentiousness that facilitates the spread of AIDS. Social liberals are dismayed that something as good as sex could possibly have fatal consequences. And everyone in the modern West is offended by the idea that there could be such a thing as an infectious disease for which there is no ready cure. Our grandparents’ generation died young, of pneumonia, influenza, tuberculosis. We think that if we have to die at all, it should be at a grand old age, and then only of some chronic ailment like cancer or heart disease. AIDS is thus not just an illness; it is a gauntlet thrown down before us, a challenge to all our comfortable assumptions about the way the world ought to be.

Perhaps this is why people tend to take AIDS so personally. We practically define ourselves in relation to it. Does AIDS happen to “us,” or does it happen to “them”? For gay white men, AIDS has from early on been something that happens to “us.” AIDS was first identified in young gay men in centers of gay culture like San Francisco and New York. As gay men began to recognize how many of their number were infected, ill, or dying, they made AIDS a rallying point, calling for better medical care and better access to care, for less-risky patterns of behavior, for a readiness to care for the sick and to mourn the dead. And, over against the condemnation and rejection that many of them had experienced from family, society, and the church, they sought for ways to affirm and understand the value of their individual and corporate lives in the face of this terrible and overwhelming epidemic.

For a good many Christians, on the other hand, AIDS is something that happens to “them.” Many conservative Christians have long been inclined to suppose that the worst sins are sexual, and the worst sexual sins are homosexual. Perhaps it is thus not surprising that many Christians seized on the early correlation of AIDS and homosexuality as sufficient reason to understand AIDS as a uniquely terrible fate that befalls uniquely wicked people. AIDS doesn’t happen to nice people, decent people, Christian people. It happens to bad people, who deserve it. The so-called “innocent” victims of AIDS—hemophiliacs, infant children—are pathetic exceptions to the general rule: To have AIDS is to be guilty of something really bad. Thus, as the gay community responded to AIDS as an enemy requiring engagement, and as a call to affirm the value of their lives in the face of those (especially Christians) who would reject and condemn, large segments of the Christian community responded to AIDS as God’s judgment on other people (especially homosexuals), as something to be feared and avoided but not encountered personally.

My late husband, Hyung Goo, and I felt ourselves caught in the crossfire between these opposing rhetorical camps. Neither the external (Christian) nor the internal (gay) rhetoric of AIDS paused long to consider the existence of happily married, conventionally Christian people living with AIDS. For the Christians, people with AIDS were the enemy, not members of the family. For the gay community, the institutions of marriage and the church were oppressive, irrelevant, or both. And yet, we were members both of the AIDS community and of the family of the church. We moved in both of these worlds, belonging to them by virtue of our obvious affiliations, and yet strangers by virtue of our other allegiances. Our dual citizenship made us aliens wherever we went, and caused us to listen simultaneously as insiders and as outsiders to the rhetoric of both worlds.

Photo by Nick Fewings / Unsplash

In search of love in the church

A dominant theme in too much Christian rhetoric concerning AIDS is that AIDS is primarily a moral problem, and a life of virtue will make the problem go away. In the summer of 1994, Focus on the Family published a full-page newspaper ad headlined, “In Defense of a Little Virginity,” the burden of which was that all the condoms in the world wouldn’t keep you from coming down with AIDS if you were so foolish and immoral as to engage in illicit sexual activity. You might as well play Russian roulette as practice “safe sex,” said the ad. The only way to protect yourself from HIV is “abstinence before marriage, then marriage and mutual fidelity for life to an uninfected partner. Anything else is potentially suicidal.”

At the time this ad appeared, there was increasing published evidence that consistent practice of so-called “safer sex” did in fact dramatically reduce rates of transmission of HIV. One would never have known this from reading the Focus on the Family ad, with its shrill insistence that “safe sex” was essentially the same as suicide, only slower. But I was familiar with the current epidemiological wisdom concerning HIV transmission, and I wondered: Why was it so important to the Focus on the Family writers to deny this? What would they lose if it were possible to prevent the transmission of HIV by, for example, the consistent use of condoms? And what exactly was the sexual morality that they were promoting? Was it merely incidental that they portrayed virginity and marital fidelity solely as disease-prevention strategies, or was this really at the center of their sexual ethic?

It seemed to me that there were a couple of complementary currents of thought running beneath the surface of this ad. One was a view of the world in which people get what they deserve. AIDS, so this train of thought goes, is a very bad thing. Anyone who has AIDS must have done something very bad to deserve it. Anyone who would risk exposure to AIDS must be similarly morally corrupt. Therefore, such persons deserve to get AIDS, too.

We might call this the “Job’s comforters” approach to AIDS, or indeed to suffering of any kind. When Job was struck with suffering, three of his friends came, they said, to comfort him. This supposed comfort consisted in urging him to remember and confess the sins he must have committed in order to deserve his sufferings. “Think now,” says one of his friends. “Who that was innocent ever perished? Or where were the upright cut off?” In other words, it is impossible that this is not all your own fault. Repent! Then everything will be okay again.

In fact, as the narrator of the story makes clear in the beginning, Job’s sufferings were never a result of his sin. Job’s comforters were wrong when they assumed that great suffering is an infallible indicator of great sin. And yet, this assumption has proven powerfully attractive to legions of Job’s comforters after the biblical ones. Suffering—especially the suffering of other people—seems so much more manageable if we assume it is those others’ own fault. Suffering then also serves the handy purpose of flagging everyone who has been bad. Do you want to know who the sinners are? Just look for the sufferers.

But now imagine that it might be possible to sin and yet to escape suffering. Imagine, for example, that it were possible to have illicit sexual relations and yet not come down with a sexually transmitted disease. How could anyone tell who the sinners were? It would be very confusing. More than that, it would turn the moral framework of the world upside down: It would make it possible for people to avoid reaping the consequences of their sin. Hence the horror of modern-day Job’s comforters at the idea that it might be possible, through the practice of “safer sex,” to prevent the transmission of HIV. Never mind that the sex in question might be perfectly licit by traditional Christian moral standards: for example, a wife having marital relations with her HIV-infected husband. Job’s comforters, in their eagerness to maintain that people who go astray will certainly get what is coming to them, cannot be bothered to distinguish questions of epidemiology (How can HIV transmission be prevented?) from questions of Christian morality (What is morally good sex?). Epidemiology and morality are conflated: AIDS is bad, people with AIDS are bad, sex with people with AIDS is bad. Decent people should stay very far away from AIDS and people with AIDS, and then everything will be fine.

This is the flip side of the Job’s-comforter approach to suffering: the idea that the Christian life is fundamentally an exercise in looking out for number one. Self-preservation is the highest of all goods, and the fundamental motivators of Christian moral behavior are therefore self-interest and fear. Thus the authors of the Focus on the Family ad dismiss all talk of “risk reduction,” and make clear that, in their view, it is never enough simply to reduce one’s risk for HIV; what is needed is the complete elimination of any risk. That is what virginity and marital fidelity are for: They are essential components of a comprehensive disease-prevention strategy. One wonders what other components of such a strategy might be. Christian physicians refusing to treat HIV-infected patients? Christian parents removing their children from schools attended by HIV-infected children? Christian churches barring their doors to HIV-infected people?

It is hard to reconcile this vision of the Christian life with Jesus’ words: “Greater love has no one than this: to lay down one’s life for one’s friends.” Jesus seemed to think that a Christian person might be called to risk or even to give his or her life in the service of another. Did Jesus mean to make an exception for certain kinds of risks—non-respectable ones like AIDS, for example? Given that Jesus went willingly to the most shameful death the ancient world had to offer, this seems unlikely.

Jesus seemed to think that a Christian person might be called to risk or even to give his or her life in the service of another. Did Jesus mean to make an exception for certain kinds of risks—non-respectable ones like AIDS, for example?

It also seems unlikely that Jesus would recommend virginity and marriage in quite the same terms as Focus on the Family did, namely as “the only … safe way to remain healthy in the midst of a sexual revolution.” According to Jesus, the whole of the Christian life can be summed up as the love of God and the love of neighbor. Shouldn’t it rather be the case that Christians practice sexual purity and faithfulness because they are disciples of a pure and faithful God whom they love and wish to imitate? And shouldn’t Christians respond mercifully to those who suffer, given the mercy Jesus showed to suffering people?

But love, either as a motivation to action or as the content of one’s behavior, flies out the window rather quickly for many people, including many Christian people, when AIDS comes into view. AIDS, after all, is a disease of bad people. Good people do not run risks that might result in their meeting a fate that strikes only bad people. Thus, for example, the president of a Christian college, upon finding out that I was married to a man with AIDS, telephoned me long-distance to berate me for my supposed naiveté in believing that condoms reduce the risk of transmission of HIV. He then rescinded the approval he had given that I be hired at his institution.

Where was love, as Christians confronted AIDS?

In search of hope in the world of AIDS

If living with AIDS gave Hyung Goo and me an uncomfortable perspective on Christian rhetoric concerning AIDS, being Christians gave us at least as uncomfortable a perspective on the internal rhetoric of AIDS. One of the things that people do when confronted with incomprehensible disaster is attempt to construct some sort of narrative that promises to make sense out of the suffering it details. This effort received extra impetus in the case of AIDS, because so many of those who suffered with AIDS in the early years of the epidemic were artists of various kinds: dancers, musicians, photographers, filmmakers. Sometimes it seemed that we could hardly turn around without coming up against some artistic expression or other that had AIDS as its subject. And yet, so many of these efforts to create meaningful narrative seemed to fall breathtakingly short, to do no more than call attention to the fact that the person who spoke through this creation had, in fact, no hope at all.

In the spring of 1993, the documentary film Silverlake Life was shown on public television. Silverlake Life was made by a gay filmmaker and his lover, both of whom had AIDS, as a sort of video diary of their life and (as it turned out) the filmmaker’s death from AIDS. The film was essentially a love story, and, as such, it touched a lot of nerves in me. I found all too much in the film to identify with—the love, the anger, the fear, the helplessness, the companionship and devotion these two men had with and for each other. And there was all too much insight into the experience of the sicker partner, who died in the course of the film. He was tired, sick, frightened, hopeless; and, at the end, in so much pain, so disfigured by disease that seemingly nothing was left of his humanity except his capacity to suffer.

There was a scene toward the end of the film in which Mark, the less sick partner, was filming Tom, who was lying in bed, eyes closed, close to death. Mark was weeping, and saying, “I fed Tom some food that didn’t agree with him, and he was up all night vomiting. I shouldn’t have done it. I felt so bad. I felt so guilty, so ashamed. I shouldn’t have done that to him.”

“Someday, that will be me, I thought. “I will feel just that way. I will have had just such an experience.” I think there was a sense, in fact, in which I already felt this way—responsible in some major way for Hyung Goo’s well-being, and yet utterly helpless to accomplish it, weeping somewhere inside myself in rage and frustration and feeling myself accused somehow for not being able to control things that were completely beyond my control.

One would think that watching this film might have made me feel less alone, that it might have made me feel that there were others who had shared the experiences I had had and would have. In fact, this was not the effect. Faced with the film’s bleak realism, I felt more isolated than ever. These two men, both of whom had experienced great alienation, had found a measure of solace in their love for one another; but their lives had devolved into a spiral of suffering and hopelessness in which there was, in the end, no meaning to be found. Their attempts to create some kind of significance for their lives—through their defiant affirmation of gay culture, through their films, through their dabblings in the supernatural—were pathetic, and obviously so. Tom said at one point, agitatedly, “I can’t remember things anymore. I can’t remember any of the good things I’ve done. It’s the things you’ve done that give meaning to your life … isn’t it?” It was obvious from the film exactly how much meaning his work gave to his life. He died, racked with pain and devoid of hope, leaving behind his lover, whose only comfort as he anticipated his own death was to imagine that he sensed Tom’s disembodied spirit flitting about the room from time to time.

Hyung Goo and I had a friend whose sister and brother-in-law both died of AIDS during the course of our marriage. We knew of their illnesses, and heard of their deaths through mutual friends, but Rini seldom spoke of them to us, and never talked with us about our or her own experiences with AIDS. After Hyung Goo’s death, Rini confessed to me that she had kept her distance from us because she had felt there was nothing she could say. She felt she would have had to be supportive, or make morbid jokes, or something, and she just couldn’t. All she could have done was tell us how horrible it was, and even that would have been futile, because we would have to find out for ourselves.

Where was hope, in the world of AIDS?

Connecting across the divide

A few months after Hyung Goo’s death, I participated in a panel discussion at Duke Divinity School that was part of a continuing-education event designed to assist pastors in responding appropriately to AIDS. Among the other panelists were a retired minister whose son had died of AIDS, an HIV-positive black man, and an older man in the final stages of AIDS.

The minister said that his son, Paul, had stopped going to church when he was in college because (as his father found out much later) someone had told him that homosexuals had no place in the church. Paul didn’t tell his family that he was gay or that he had AIDS until a year or so before his death. I heard later, from a social worker who had known them, that Paul’s parents and siblings had responded to his illness with extraordinary love and compassion. But they kept the specifics of Paul’s illness to themselves, and perhaps that was prudent, because when their church found out that Paul had died of AIDS, they were ostracized. They ended up leaving that church and going to another. Paul’s father said, “The church let my son down, and it has let down everyone else who is gay.”

“The church let my son down, and it has let down everyone else who is gay.”

Robert, the black man with HIV, talked about the particular challenges and isolation he experienced as a gay black man. He felt rejected by the black community, rejected by the church, and an outsider to the (mostly white) gay community. He served on the boards of a number of AIDS service agencies, but had kept his own HIV status a secret from most of his family members. Of the few relatives who knew, some had responded with rejection, others with only tentative acceptance. He had just that very day spoken with his pastor about being gay and having HIV. What would come of that? It was too soon to know.

Bill, the older man with AIDS, was the angriest of all. Everyone was hateful. His family wouldn’t speak to him. He had had HIV for 15 years, had been doing chemotherapy for many of those years, and was beginning to feel that his life was not worth living. Two hundred of his friends had died. He had been present at the deaths of six of them. He had heard of a church that had ruled it would not conduct funerals for suicides or persons with AIDS. This made him twice an outcast, as he planned to kill himself, possibly soon. “People who call themselves Christians should act like it,” he said. “Jesus said, ‘As you did it unto the least of these my brethren, you did it to me.’ I am one of ‘the least of these,’ and I plan to tell God exactly what other Christians did or didn’t do for me.”

Then it was my turn. As the date of the meeting had approached, I had wondered what I should say. It had not occurred to me to wonder what the other panelists would say. Now I wondered why I had even come. What could I say, what could anyone say, in the face of such anger and hurt and alienation? Lacking any better option, I told the truth. I said that after years of keeping secrets, we told everyone we knew, and they all responded by taking care of us. Our church’s intercessory prayer group prayed for us. The members of our small-group Bible study shared their lives with us. The women of the church gathered around me in my widowhood. And I told the story of Hyung Goo’s and my marriage: how even in the midst of HIV and AIDS we had managed to get married and stay married and have a full and happy life together. Hyung Goo had lived and died well, and it had been an honor to be his wife.

When the meeting was over, we all stood to leave. I had been seated next to Robert. He turned to me and said, “May I hug you?” He embraced me and said, “You give me hope that someday I will find someone who will love me, even though I have HIV.” The depth of the divide that his words crossed was vertigo-inducing: He was gay, black, male, HIV-positive; I was straight, white, female, HIV-negative. And yet, he saw the love that Hyung Goo and I had shared with one another and had received from those around us, and he reached out and found hope.

I would like to think it is significant that this connection took place, if not actually within the household of faith, then at least in its general vicinity. A divinity-school continuing-education forum is not the church, but everyone who was present was a pastor or a parishioner at some church congregation. When we left, we all went home to those congregations. Could love and hope return with us? Could faith, hope, and love come together to form a healing and unitive response to AIDS, in contrast to the existing rhetoric of AIDS, which seemed to allow only for recrimination and division?

Margaret Kim Peterson is associate professor of theology at Eastern University. This article is excerpted from her book Sing Me to Heaven: The Story of a Marriage (Brazos Press, a division of Baker Publishing Group, 2003) and appears here by permission of the publisher.

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