"For over ten years now," said Bruce, who has continued to test negative, "I've been picturing myself at a hospital bed feeding him, but that's never happened. In ten years, John's never been hospitalized. So everything we think it's going to be like, it isn't like. Everything that does happen is completely unpredictable. We've had to adjust and readjust over and over again through the years."
"We've always been completely prepared for me to die right away. We've never prepared for me to live another year," John added. "But I've lived."
For Simon Watson and Marcel, the story has been very different. Together since January, 1988, when they met in Marcel's native Puerto Rico, both men believed they were HIV-negative until Marcel began feeling run-down in 1990. "I went with Marcel to the clinic when he was tested," explained Simon, a longtime activist with ACT UP. "We were both kind of bewildered. For the next four to six months, Marcel went into total numbness. He totally shut down. I got tested again immediately, after he tested positive, and came back negative."
Marcel said, "After the first six months, I started getting more depressed, then I started therapy specifically for being HIV-positive. Shortly after that, I was diagnosed with AIDS, just from T-cell count. After a year and a half of [T-cells] going down, I started going back up. I started changing my whole life. But the couple thing took a longer time to work. I don't think we really talked about what our issues were as a couple with HIV. We were talking about being supportive of each other but really weren't talking about AIDS in our lives."
Whatever the statistics, men in mixed status relationships face heavy psychological burdens. The Male Couple Study conducted in 1993-95 at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute found that both negative and positive partners were experiencing greater psychological distress than similar samples of other HIV-negative and HIV-positive gay men and even general psychiatric outpatients. The seventy-five couples in the study revealed elevated levels of depression, anxiety, hostility, hopelessness, and demoralization. Further, two-thirds of the study sample reported unprotected oral sex with the negative partner being receptive, while two-fifths had engaged in anal intercourse without a condom.
"The need to intervene with couples was clear," said Dr. Robert Remien, a clinical psychologist who was Principal Investigator of the Male Couples Study. "To begin with, a lot of gay couples feel that there are very few role models for them, so there's a struggle just to be a couple. Then on top of that, for some, it's an extra challenge to be of opposite HIV status."
"Many of our participants told us about the lack of support and validation from their friends and family," added Remien. "Both the positive and negative men have told us that their friends and family wonder and question why they're getting themselves into, or continuing, a relationship like this with all the risks, whether it be risk of HIV transmission, risk of illness, risk of being dependent on someone else or having someone else being dependent on you, or even the risk of death."
"Some of the important themes," noted Wagner, "are caregiving, making sure that HIV doesn't overwhelm the relationship, keeping HIV in its place, sustaining sex and intimacy with safety, maintaining hope and optimism, feeling and receiving support, and being affirmed that being a mixed status couple is worthy of support."
"We help people to listen to their partners with empathy while suspending judgement, and trying to understand what's going on," added Carballo-Diéguez. "The workshops are designed to help participants sort out the problems that the couple may be confronting, prioritizing some to pay attention to them first, and find ways to solve them. People learn a process to define a problem, deal with it, brainstorm solutions, critically evaluate the solutions, and choose the approach that seems best."
In some ways, the workshops are a first for Body Positive (BP). Although BP has been sponsoring groups for mixed-status couples for over two years, "the big departure for us is that our support groups have always had as their goals -- primarily -- the expression of feeling, identification with others, and concrete support-network building, rather than behavioral change and psychological insight," said Jeffrey Karaban, Deputy Executive Director of BP.
"I think this collaboration is very exciting," added Karaban. "In this day of limited financial resources, it behooves us to have linkages like this and to work collaboratively. Community-based organizations that work in isolation can become complacent, while academic institutions can become more and more about less and less. But this is work that is relevant and directly related to a product that is reproducible, useful, helpful, and measurable."
After three years with zero T-cells and a severe bout of microsporidiosis-related wasting, John decided to join a drug study in 1996 and found himself in far better health. The couple began to realize that their relationship had to become more than a death watch. "It meant reinventing our lives," said Bruce, "because at first we thought he was only going to live six months, but then it's six years, eight years." So while a future of living with HIV was before them, they lacked any sense of what should constitute "normality" for them as a couple.
By contrast, Simon and Marcel had slipped into a state of tense, uncomfortable "normality." Simon worked seven days a week and Marcel allowed him little or no role in medical decisionmaking or care. The couple hardly ever communicated and ceased being sexually intimate. "Classically, what would happen is that for six months we would go on having non-conversations about 'What did you do today?,' said Simon, "and then every six months it would get to the point where we wanted to strangle each other, and then there'd be lots of anger, recrimination, pain, savagery. Then it mends, the scar tissue heals, and you keep going for another six months . . . I [felt] like I was being cheated, like I was missing something, and I know Marcel had his own set of issues and frustrations about what he wanted."
After years of denial about HIV and AIDS, Marcel took so ill at the end of 1995 that he had to be hospitalized. "It was just a nightmare going into St. Vincent's on New Year's Eve," recalled Simon. "We got out of the cab while fireworks were going off in Times Square. The entire doctor and nursing staff was out on the street watching the fireworks. We sat there while minute-by-minute more bodies came in of people who were sick, shot, stabbed. It was like the middle of a war zone, and Marcel was shaking -- it was just a nightmare."
"That was the crisis," Simon continued. "We both had to acknowledge that it was here, and if we were going to be together, we had to face it together. Then the group came along." After receiving a flyer sent to all couples who had participated in the first study, Simon and Marcel decided to join a pilot group for the new workshops.
For both Simon and Marcel, however, initial apprehension quickly gave way to enthusiasm. "We saw ourselves reflected in other couples, and it was such a relief to see them do the same stuff that we're doing. And it didn't seem they were such big things any more," said Marcel. "There were still problems, but we could see that other people were dealing with the same stuff and going through it successfully."
John and Bruce had much the same take. For Bruce, the group presented opportunities that he and John could never have explored alone. "The most interesting thing was having the group of positive members get together and talk about some issues with the negatives listening, and then switching that whole process around. That's not possible to do at home."
For both men, the skills imparted by the group, in John's words, "opened up a whole new level of communication. It gave us a vocabulary for a whole different set of problems that we needed to talk about and didn't know how to or didn't have the words to discuss." These new communications skills have enabled them to pursue the stability they have craved so badly.
"Bruce and I have made a conscious effort to work on 'normality.' When Bruce had to give me intramuscular shots, we made it normal. It was perfectly normal that when couples get up on a Saturday morning, one of them gives the other a painful shot of anabolic steroids in thick oil," said John. "To be in a situation where there are other couples dealing with the same things in the same way just instilled a sense of normality. I know it's strange by a lot of people's perceptions, but we're not the only ones creating this normality. To reinforce that it's normal for couples to be doing what you're doing is no small relief."
For Simon and Marcel, the change has been even more profound. This has been thanks in part to the workshop's "homework" assignments in which the couple are asked to continue each session's conversation using such newly learned techniques as effective expressing and active listening. For Simon, the homework was useful because "there was a structure about how to talk about [issues]. One of the things that polarized our discussion in the past is that I have a sharp tongue, and my temper flares in an argument, and Marcel's response to that would be to shut down, to not talk. One of the things we practice is to have ground rules for fights, how to have arguments."
One of Simon and Marcel's biggest breakthroughs concerns reestablishing sexual intimacy. "I saw sex as being such a big issue, such a loaded issue, and I thought there were so many things behind it that I just didn't want to bring up. I was so afraid of feeling ill, being abandoned, and not being wanted in this relationship," said Marcel. "It wasn't until we talked about sex in the group that we actually talked about 'what's safe sex for you, what's safe sex for me, what's comfortable for both of us?'" The skills they learned in the workshop, Simon noted, "allowed us to articulate, to break down things into component areas: it defused the anger around charged subjects."
The progress is sometimes palpable: "Whether it's over the course of a single session or over the course of the eight sessions, I've witnessed partners physically moving closer to the other, including reaching out with their hand or putting their arm around one another, and I think that symbolizes and represents the increased intimacy that they felt with one another."
Remien, Wagner, and Carballo-Diéguez are quick to note, however, that the workshop does have distinct limits. "This is a workshop, not intensive group psychotherapy, and it doesn't offer the same individual advantages. You can't delve into specific dynamics," said Wagner. Carballo-Diéguez adds that "Many times we cannot go into some problems in enough depth. Therefore, some critical issues are brought up and left not fully explored." When warranted, such situations are dealt with through follow-up discussions outside the group and by clinical referrals.
Another clear limitation of the program is that, at least for now, it is limited to mixed-status male couples of all races between ages 22 and 55 who have been together at least four months. As such, it does not deal with how to manage the formation of a mixed-status couple. Even more significantly, the intervention cannot accommodate heterosexual or lesbian couples, whose relationships bear similarities to those of gay male couples but also have major differences. However, one of the major goals of the project is to modify the workshops for male-female and female-female couples and run future workshops at BP and other community-based organizations for these populations.
Meanwhile, Simon and Marcel now feel, for the first time in years, that they have a viable future together. After feeling confined to the status quo of their small, noisy Chelsea apartment, the couple recently moved to a garden apartment in Brooklyn. Whereas he once couldn't see the point of starting anything new, Marcel has returned to illustrating children's books and has begun taking guitar lessons at GMHC. He likens their renewed relationship to a second honeymoon period.
Simon agrees. "It feels like our relationship is at a new point. A realistic one, but also one where we're able to think about our existence as a couple. We have a rolling six-month horizon, and we can do a fair amount in a short period of time. Now there's possibility."
For information about participating in the Couples Project, call 212-740-3204.
Raymond A. Smith, director of the Couples Project at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute, is editor of the forthcoming Encyclopedia of AIDS.