By Sean Pendergast
By Sean Pendergast
By Sean Pendergast
By Jeff Balke
By Richard Connelly
By Jeff Balke
By Casey Michel
By Craig Hlavaty
Rochelle and Rhonda are sitting next to each other, eating M&M's and recalling the day Rochelle almost died.
It was complications from Rochelle's HIV that landed her in that emergency room, so dehydrated, she says, that the doctors and nurses could barely squeeze one drop of blood out of her fingertip for tests.
"The lady in the emergency room, she said, 'Sister, you are just struggling,' " remembers Rochelle in a matter-of-fact voice. "And I said, 'What do you mean?' And she said, 'You're dead. But you're just refusing to lay down.' "
Rhonda, Rochelle's partner for the past year and a half, takes a deep breath at the memory. She's HIV-negative, and doesn't know what it's like to live with the illness. But as Rochelle's girlfriend, she is as close to it as she can get. She loves Rochelle, tries to make sure she takes her medications, urges her to stay on her special diets.
"I thought she was going to die right there," says Rhonda, remembering that day in the hospital. She takes off her glasses, rubs her eyes and looks sideways at Rochelle. "That screwed me up for a little while."
Rhonda keeps on talking in a soft, rough voice. She says her biggest fear is that one night the two of them will go to bed, fall asleep and Rochelle won't ever wake up in the morning.
"You love something so much, and you can't stop what's going on," says Rhonda, as tears begin to fall in earnest over her full cheeks. "You can only help it a little bit."
Rochelle sees Rhonda's tears but doesn't begin to shed her own.
"Don't you dare cry on me!" she snaps. "I'm not going anywhere! I'm too struggling to die."
For the next few moments, the two women alternate between debating and consoling each other. Rochelle says if the roles were reversed -- if Rhonda were the sick one -- she would be crying too. But Rochelle counters that she never gets "majorly sick." Wrong, argues Rhonda, remembering the times Rochelle's T-cell count dropped dramatically, or her colon began giving her problems. She ticks these events off on her fingers like a lawyer making a closing argument.
Rochelle sighs and says as long as she can walk around and talk to Rhonda, those things don't count. She thinks "majorly sick" will be when she won't be able to feed herself, or bathe herself. But Rochelle doesn't think about that time.
"I'm gonna be here," she says, her voice softening. "I'm gonna be here till time indefinite."
Rhonda stops crying, but she doesn't seem convinced. Being with Rochelle makes her so happy. But sometimes she's not sure how to handle the uncertainty that comes with loving someone with HIV.
"It can take you," says Rhonda to Rochelle. "It can reach out and get you at any given moment."
In medical jargon, Rhonda and Rochelle are known as a serodiscordant couple. Some experts use the less clinical-sounding "serodiverse," or "mixed status." But either way, the term is a simple one applied to couples who are made up of an HIV-positive and HIV-negative person. As a mixed-status couple, Rhonda and Rochelle are not an anomaly. It's been just over 20 years since the Centers for Disease Control and Prevention published its first mortality report on what came to be called AIDS, and with new, more aggressive HIV treatment extending the length and quality of HIV-positive peoples' lives, more of them are finding new opportunities to fall in love. And they often fall in love with people who are HIV-negative.
"We are seeing more now because people are living longer and living healthier," says Dr. Robert Remien, a clinical psychologist and professor at Columbia University. While there is no national resource center specifically for couples in Rhonda and Rochelle's position, Remien is one of the country's foremost researchers into the issues surrounding mixed-status couples. In the early '90s, in collaboration with the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute, Remien developed The Couples Project, eight-week workshops that concentrated on problem- solving within mixed-status couples.
"Couples can feel isolated, and very closeted in their serodiscordant status," says Remien, who has worked with both gay and straight couples. "There is a lack of support -- they get a lot of negative feedback just for being in the relationship: 'Why are you doing this to yourselves?' "
The risk of transmitting the virus is often a secondary concern to the "psychological risks" these mixed-status couples can take, he says. Rhonda and Rochelle's argument is a textbook example of the issues that can surround both partners: grief, guilt, anger and fear of loss. Oftentimes, says Remien, these issues can feed on one another, creating a chain of dysfunction that can be broken only by regular, honest communication.
Ken McLeod, director of the Bering Support Network at Bering Memorial United Methodist Church in the heart of Houston's Montrose neighborhood, agrees. He has seen such a rise in the number of mixed-status couples in the Houston area that the support network has decided to start a special group just for them. While both McLeod and Remien say there is no way of knowing how many of the roughly 800,000 Americans living with HIV are in a mixed- status relationship, both say the issue can become only more important as time goes on and people continue to live longer lives with the illness.
"We've just seen a lot more couples express this issue," says McLeod, a social worker and advanced clinical practitioner who has worked in the field of HIV for more than a decade. "We've got to listen to the beat of the drum and respond."
When Ron Drumm moved home to Houston five years ago after living in San Francisco for 20 years, the last thing he thought he would do was date someone who was HIV-positive. In fact, he barely wanted to have any kind of relationship at all.
"I went through a period where I thought I was the angel of death, because I had seen so many people through to the end," says Ron, 52. While working as a bartender, Ron dated and befriended many people who eventually succumbed to the virus. Having been in relationships where honesty had not been a prerequisite, he was getting tested every four months and felt like he was "sitting on top of a barrel that was about to explode." Finally, he felt like he couldn't handle one more death -- especially his own. So he retreated to his hometown of Houston, HIV-negative and determined to be by himself, at least for a little while. For almost a year he lived with his brother, went to work and rarely ventured out socially. He just shut down, he says.
But one evening a co-worker suggested a drink after work. Ron, who didn't have a car, accepted the offer and the ride. At the bar, Ron saw Thomas. The two started talking. When Ron's friend got ready to go, he asked if Ron would need a lift home.
"But Thomas said he would make sure I got home okay," says Ron, laughing. "Now we're starting our fifth year."
That very first night, Thomas says, he told Ron about his HIV. He had tested positive in 1987 and lived in an AIDS assistance facility. The fact that Thomas was honest right off the bat, something Ron had not experienced in other relationships, was enough to make Ron wonder if he could fall in love again.
"Thomas had a lot of the same values I have about coming into a relationship," says Ron, a soft-spoken man who works in inventory and delivery for a local florist. "My values were centered about creating a home space, having the security of someone to go through all those things with."
Thomas, an extreme extrovert who speaks in a fast clip and peppers his conversation with jokes, says he knew right away Ron was someone he was interested in.
"I want you in my life because you add to my life," the 40-year-old says in a rush. "You have to be loving and caring and fabulous and vivacious. I just like beauty. Things like flowers and piglets and angels and Ron Drumm."
Ron and Thomas dated for about a year, spending lots of time together and getting to know each another. Ron liked to stay in and be a homebody, Thomas wanted to go out a lot. Ron liked horror movies, Thomas chose drama. Ron enjoyed bowling, Thomas preferred to be "the pom squad" and watch from the sidelines. But they both say they enjoyed being together so much and cared about each other so intensely, they knew the next step was to move in together.
"Honesty was what I demanded," says Ron, of his ability to enter back into a relationship. "I can trust him further than anyone I've ever known in my life. And I knew that. And I fell in love with this person, and HIV is a part of him. So I learned to embrace that too, just like he does."
Ron and Thomas became an ideal example of a mixed-status couple who made it work. Amid good discussions about how they were feeling and what they were thinking, they decorated their new home together.
"I like things, as Ron says, 'nelly,' " says Thomas with a laugh. But they compromised. Ron's bathroom was a subdued Santa Fe style. Thomas's was done up in piglets and angels. Ron did some dark green stenciling around the dining room table. Thomas, a florist, wanted to put greenery on anything that didn't move.
And as far as intimacy, there was never any question from the beginning that it would be safe. Because of the risk of transmission, "with many couples, the sex life goes to hell," counselor McLeod says. "And getting people to talk about sexual problems is always a problem, even without the HIV." But Thomas and Ron did discuss it, and unsafe sex is not an option for them.
"We've always, always practiced safe sex," says Thomas. "We can't even use the excuse of drinking. I don't drink, and I'm going to make sure he has a rubber on. Period." In addition, Ron still gets tested every six months.
And while the experts say it's common for mixed-status couples to fall into an unhealthy "nurse-caretaker" relationship -- taking away from the mutual caretaking and other ways of relating that go on in couples where HIV is not a factor -- Thomas says Ron never babies him. In fact, he says he became the caretaker, preparing dinner, decorating and mixing up fresh chicken soup for Ron when he was feeling under the weather.
After Thomas did the flowers for a holy union ceremony at Resurrection Metropolitan Community Church, the couple decided to start attending services there themselves, and they both got involved in congregational activities. Then a little over a year ago they decided to have a holy union themselves. Their families, both supportive, attended the ceremony. They joked that it was the first time they'd ever seen Ron's brother in a suit. Ron and Thomas vowed in front of everyone to be true to each other in health and in sickness too.
Things seemed to be going so well.
And then one day last February, Thomas called Ron at work.
"He had just come back from the doctor, and he said, 'Are you sitting down?' " remembers Ron. "And I knew right then that it was probably HIV-related."
Except that it wasn't.
Thomas had been diagnosed with stomach cancer.
"That put it in perspective for me," says Ron. "Anything can kill you, not just HIV. It's like that old thing, you could walk out the door and get hit by a bus."
Thomas had surgery to remove the cancer, and doctors want to wait and see about chemotherapy. He's lost quite a bit of weight but feels good about his chances. Like most things in Thomas's life, he looks at it in the best light possible.
"My life is really, really full," he says. "We take it one day at a time. As long as I'm here today and the tumors don't come back, we don't look beyond our little world."
So Ron and Thomas continue to try to make it work for them. They go out, they see friends and family, they attend church. And above all, they talk.
"We know where the other stands," says Ron. "It's honesty and respect."
"We argue like everybody else does," admits Thomas. "If I'm mad or upset, I'm going to tell him. But we never go to bed mad. You have to talk about it."
Kathy and Michael (not their real names) sit next to each other on the couch in their apartment. They take turns pulling cigarettes from a pack of Marlboros on the coffee table in front of them. Baby photographs of their five-year-old son are all over the walls.
"We met in our addiction," says Kathy in a smooth, matter-of-fact voice. "I met him in the motel, and he never left."
There are rough stories, and then there are stories like Kathy and Michael's. Both were longtime crack addicts who lived on and off under bridges downtown. When they weren't under bridges they might be in jail, in rehab (which never lasted long) or in a shelter if they absolutely had to be. The daughter of drug users and dealers, Kathy started abusing drugs at the age of 15. Michael smoked his first joint at eight. For years they created a life together that Kathy claims was surprisingly "comfortable." With pride in his voice, Michael says he tried his best to make her happy.
Both are blunt when it comes to talking about their past troubles. Now, with help from AIDS Foundation Houston, they have been clean for over a year. Kathy works as a secretary and Michael as a maintenance man. And twice a day Kathy tries to remember to take the HIV medication that she hopes will lengthen her life.
"I'm on her all the time," Michael says of Kathy's medication, in a voice rough as gravel that is the complete opposite of his wife's.
Kathy believes she contracted the virus sometime in 1992, most likely from sex. When she met Michael, she had been positive for several months. But in the distorted world of addiction and homelessness, Kathy decided not to tell Michael about her positive status. In the close network of homeless people they knew, Kathy understood public knowledge of her HIV would affect whom she could sleep with for money or drugs. But she says the lie she was living made her feel disappointed in herself.
"You didn't lie," Michael corrects. "You just didn't tell me."
Finally, at the urging of a counselor during one of the couples' unsuccessful attempts at getting clean, Kathy admitted her HIV status to Michael. He decided to stick around.
"I wasn't afraid," says Michael. "I wasn't angry. I was a little disappointed. But among the other disappointments, one more little disappointment's not going to matter to me."
And so Kathy and Michael continued on, living with the HIV as just another disappointment in a long list of big troubles that continued to plague them. They couldn't stay clean. They were in and out of rehab, wondering where their next chance to bathe would come from. Michael says he wasn't safe when it came to protecting himself from the virus. At the age of 32, much to her surprise, Kathy discovered she was pregnant.
"When I first got pregnant, my family said, 'You're bringing a baby into the world, and the baby's going to be sick,' " says Kathy. But Kathy was more concerned about the drugs she had been ingesting during the short time she had not known she was pregnant. She got into rehab, started taking medication for the HIV, and her son was born negative. Five years later, he still is. Now the small family is living in an apartment and both Kathy and Michael are off drugs. This time, Kathy swears it's for good.
But unlike Thomas and Ron, Kathy and Michael do not practice safe sex. Michael says he even wants to have another baby. When he gets around to it, he says, he tries to get tested. Kathy rolls her eyes when he mentions this. It's no good to bother with testing when you never use a condom, she says.
"I used to feel real guilty about it," Kathy says of putting Michael at risk for catching the virus. "But then I was like, he's an adult, I've let him know. What am I gonna do? Say, 'No, you can't if you don't use a rubber'?"
Michael grunts at Kathy's proposition.
"You could, but I wouldn't listen," he answers.
Michael understands others might think he's crazy, but according to the experts, his actions are not uncommon among the negative partners in mixed-status relationships. Because of the growing view of HIV as a chronic, treatable illness, many negative partners are taking the risk. And for Michael, whose life has been full of nights spent under bridges, living with HIV is not something that scares him.
"You could walk by a building and something could fall on you," he says. "I'm just gonna live my life the way I have to."
He admits he doesn't think about the future, because he doesn't see a need to worry about what he can't predict. Kathy says she doesn't sit and think about it, because if she did she'd be depressed all the time. But when pushed to discuss it, Kathy admits there are things they should look into, like burial insurance.
"I don't want someone to spend thousands and thousands of dollars to bury me," she says in a casual voice. "Just the basics."
"What about nice and crispy?" jokes Michael.
Kathy looks at him and says she doesn't want to be burned, she wants to be buried. So Michael insists he'll bury the ashes.
"I like to keep life fun," he explains.
And life, he says, is so much more manageable without the drugs. He thinks drug addiction makes the HIV seem easy in comparison. Kathy agrees, but thinks that maybe she'd like to become some kind of HIV and drug awareness educator, talking to kids about the dangers of the streets and the importance of making good choices -- something she wishes her own husband would consider.
"If you don't have to live through it, don't," she says, inhaling on her cigarette. "If you have the choice ahead of time " She pauses and slaps her husband on the knee and looks at him pointedly. "Make the right decision," she finishes.
"I will," answers Michael, "when I get my baby."
Kathy moves past his comment and keeps talking.
"There's already so much, why add one more thing?" she says. "I already have this one more thing. If you have the choice " Kathy stops and shrugs her shoulders. "But people don't think like that."
Even though they have to argue about something many couples never have to deal with, Rhonda and Rochelle are like any two people in love. They joke around, gently teasing each other but pausing long enough to take each other's hands or demand a back scratch.
"First time I looked at her, I was like, 'Oh, what an ugly, stinking thing!' " remembers Rochelle, 31.
"I detailed cars and I smelled like a big walking automobile," explains 38-year-old Rhonda.
"Then she took a bath and dressed up real cute and I was like, hmm ," says Rochelle.
The two met at a treatment facility, where Rochelle had checked in for cocaine addiction. Rhonda admits to abusing marijuana and alcohol but says she entered the facility because she needed to get away from family members who wouldn't let her live her life on her own terms.
By the time Rochelle arrived for treatment, she already knew she was HIV-positive. She had gotten tested in 1989 and was on medication. But at the facility, one of the other residents convinced Rochelle to take more pills than she needed to. The heavy medication made Rochelle unaware of what was happening around her, and the resident was able to take a few of Rochelle's small belongings. Seeing what was going on, Rhonda interceded and decided to bring Rochelle back to her apartment to take a shower and rest.
"If someone was hurting me and could've stopped it, I would wish they would," explains Rhonda.
Slowly, the two began to spend time talking and getting to know each other. Rochelle, who says she has had relationships with both men and women, believes she contracted the virus from a former boyfriend who used IV drugs. She couldn't understand why Rhonda kept sticking around, even though she knew Rochelle was positive. But Rhonda knew Rochelle was someone she connected with -- and the HIV just happened to be a part of who Rochelle was.
"I wouldn't be happy right now if I had pushed her away back then," explains Rhonda. Through the help of AIDS Foundation Houston's Project Life Road, Rhonda and Rochelle got their own apartment and are off drugs. Rochelle is in cosmetology school and Rhonda is training to be an assistant manager at Jack in the Box. Rochelle says they're both like "big kids." On a recent trip to AstroWorld they dressed up in matching outfits, right down to the shoes. They carry a tiny photograph of the day on a key chain.
But while parts of their personal lives are more in order, the HIV isn't going away, and Rochelle says Rhonda can fall into the common caretaker role all too often.
"She's scared of losing me," says Rochelle. "She wants me to take the medicines exactly like they said. When the doctor gave me a diet, she wants to make me live it to the T! And I say, 'The medicine makes me sick, and I like to eat pork and beef!' "
"I just feel like if these are things you need to do to stay around just a little bit longer, then that's what you've got to do," insists Rhonda, who admits it can make her angry when Rochelle doesn't follow the doctor's orders.
For Rhonda and Rochelle, like Thomas and Ron, safe sex is a constant practice. And even though the day of the results makes her anxious, Rhonda gets tested for HIV every three months. But sometimes, Rochelle says, she doesn't feel like being intimate because she feels guilty every time she thinks she might be putting Rhonda in danger of contracting the virus.
"Last month we were on lockdown," jokes Rhonda.
"We argued, we fought," explains Rochelle. "I was like, 'No, we can't have sex because my T-count dropped and that means there's something going on inside my body and I don't want to put you at risk of being positive.' "
When Rhonda countered that she knew those risks going into the relationship and that she understood, Rochelle consented. But with the intimacy came the guilt.
"I don't want to do anything to hurt her," she says. "And sometimes I feel having sex with her is not showing her that I love her. Because I'm putting her at risk."
Guilt isn't limited to the positive partner, the experts say. Oftentimes the negative partner feels uneasy for just being healthy. Then, if the positive partner does something that upsets the negative one, the negative person clams up and doesn't argue. If they're already sick, why make it worse? they think. Over time, the positive person can start to get frustrated or tired of holding everything inside. Anger can build, then more guilt.
But Rochelle and Rhonda say they try to talk about everything, especially during the difficult times. When Rochelle's neuropathy acts up, or her T-cell count is down, they talk.
Sometimes they try to allow themselves to think about the future. Rochelle has three children who were taken away from her when she abused drugs, and she'd like to get them back. Rhonda wants to buy a house.
"We're doing pretty good," says Rhonda. "Having our own place is good, her going to beauty school is good."
"Rhonda's gonna let me put makeup on her and do her hair," says Rochelle, giggling at the possibility.
Rhonda sighs and answers, "That's gotta be love."
Rochelle picks at her fingernails and admits in her soft voice that feeling love is a new thing. In her past, abusive relationships were the norm. She would always start off so trusting, but things would always turn out bad. And when she found out she was HIV-positive, she wasn't sure anyone would want to be with her.
"Before Rhonda, it was like I didn't want to let anyone get close to me," she says, staring at her hands. Rhonda, who likes to do a lot of the talking, now sits quietly and listens to Rochelle.
"I said, 'I'm not going to allow myself to get close and to really love her, because I know it could never work,' " Rochelle explains. "But after she stuck by me, I said, that's it. It's destiny."
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