Residents of a local HIV/AIDS family care home make peace with the pastPulling into a driveway lined on either side by mimosa trees, I see before me the modest brick building I’ve visited countless times over the past two years, a family care home for people living with HIV/AIDS. This six-room home is one of three like it in the Triangle, providing this area with only 16 beds total for all of the individuals living with the illness in Orange, Wake, Durham and surrounding counties. Circled by gardens kept up by a former resident, this is a place for people to go when they get too sick to be on their own. Sometimes they come to get steady meals, medical supervision, substance abuse counseling, and whatever else is needed to become strong enough to move back into independent living.
But sometimes they come to live out their last days.
As a volunteer here for the past two years, I’ve cooked meals, run errands, driven clients to doctor appointments and social functions, and perhaps most importantly, spent time just talking with them and trying to bring smiles to their faces. But this time, I’m here for a different purpose. With a tape recorder tucked under my arm, I’m preparing to hear them out, to record their stories, to learn how they got here. This seems even more urgent to me than ever, since another client I had come to care for just passed. His story is mostly lost to me now. He’s the fifth friend I’ve lost since I’ve been working here.
When I first started volunteering, I was ignorant even of my own ignorance about the disease. In retrospect, it’s amazing what I didn’t know. These patients, each with different backgrounds, each with a different path to this house, have gone through a similar learning process. Except in their cases, they’ve learned the hard way, by living with the disease, by having their lives turned upside down, by facing their own mortality on a daily basis.
I have been asked to conceal the three clients’ identities for reasons that will become apparent (their first names have been changed). One is a 37-year-old man whose long-term partner gave him the virus through infidelity. One is a 26-year-old woman who contracted the virus the first time she had sex. One is a 36-year-old woman whose partner knowingly gave her the virus. Each contracted HIV through a betrayal.
Despite their different backgrounds, they’ve all ended up at the same place, sharing space and time, living like a family. They get frustrated with one another and bicker at times, but more importantly, they help each other. If one’s too weak to walk, someone else helps lift her or guide her wheelchair, or take a plate of food to her bed. They visit one another in the hospital, worry when others can’t eat, or dwell in pain. The best days are those when we sit around the kitchen table telling stories about residents who have passed, laughing about the good times, or hearing new stories from the pasts of the new clients. For these residents, it’s a comparatively good place to be. Waiting lists for homes like these average 100 persons long, according to a resident. Due to the lack of space, many people living with HIV/AIDS face homelessness.
This visit is unusual not just for me, but for the clients. On Michael’s list of appointments today he has added another one, an interview with me to discuss his illness. At 6-foot-1 and 230 pounds, Michael ambles through the door of the home a few minutes past interview time. We decide to sit in the main living room, one of the house’s three common areas. The kitchen, with a large dining table and a small stereo that often blesses the meals with gospel music, is the place where we usually socialize. The other sitting room, the “smoking room,” is a smaller room with a few recliners and a television. This room is cozier, with plants in every corner and artwork on the walls.
As I write up an agreement to keep his identity confidential, Michael talks to a new friend who has come to visit. In order to protect his and the other clients’ safety, integrity and housing, their names and address cannot be revealed to a public that, after years of being educated about HIV/AIDS, still holds some destructive stereotypes. Michael’s not ashamed of his illness, but he’s concerned about potential rude remarks from insensitive people in the community. “If someone says something to me, I’m going to want to say something back,” he tells me. One of the rules of residency here, however, is no run-ins with the law.
Michael came to North Carolina in 1993 to be near one of his sisters not long after he was diagnosed, and moved into this facility after shingles attacked his nervous system about a year ago. Although he’s lived with AIDS for about nine years, constant supervision has not been necessary until now. He’s lucky to be able to wear a stylish, silken shirt today. Not long ago, the shingles made it impossible to wear a shirt; even being wrapped in a blanket would have left him buckled over in pain. Before we make it to the sofas, Michael offers a bit of roast and veggies from the night before to the caregiver on duty. He’s a skilled chef whose career, he tells me, consisted mostly of cooking in large hotels in Delaware. This made for a good living. He and his partner, Calvin, owned a home in Delaware and were raising Calvin’s son from a previous marriage to a woman before Calvin realized he was gay. The two men had been together for five years when, in 1993, Michael began to see a rash on his hands and feet. As we talk, he shows the faded spots to me. Unbeknownst to Michael, his partner had been cheating on him with another man, he explains. Later, he found out he was HIV positive.
“It was easy for me to pinpoint where I got it from because he was the only person I had been with,” Michael says, with a chilled detachment. Michael and Calvin had both been tested regularly, and the results were always negative. When Michael was diagnosed, he had to hire a private detective to find out the truth. Shocked, but informed, Michael made his partner leave, but offered to let the child stay, having grown very close to him. In the end, both father and child left.
Due to his ignorance and fears about the modes of transmission, Michael stopped cooking for the public for a while. He wasn’t sure if food could be a vehicle for infecting others, but now he knows otherwise.
“You are more of a threat to me than I am to you,” he tells me, leaning forward for emphasis. “I’m capable, because my immune system is on the shaky side, of catching anything. The only way you can catch something from me is through open wounds, sores, blood and so forth, but just breathing and taking in the air from being around a person can kill me.”
He should be wearing a mask to prevent infection, he says, but he doesn’t. Michael says that if something happens, he’ll just have to deal with it. He doesn’t want to suffer the wondering gazes provoked by a mask.
Michael feels compelled to talk about his struggle acquiring aid for his illness, because he feels it will help others. He urges anyone who tests positive to begin the lengthy process of filing for Medicaid, Medicare and disability. It’s possible that an infected person will be too sick to work for stretches of time, he says, and for those without resources, these are the only ways to avoid homelessness and stay treated. Being on disability is the only way Michael can afford to live in this care facility. Despite the difficulty and discouragement he’s experienced, he advises those diagnosed to be persistent and visit an infectious disease clinic (there are two in the Triangle at UNC-Chapel Hill and Duke University) in addition to those doctors provided by social services. Otherwise, he says cynically, “you’ll never get disability.” This governmental support will not be taken from him now, but according to the house manager, it’s increasingly difficult for new applicants to get this aid due to the economic crunch. This means more people are expected to be homeless living with this virus.
Michael’s had a difficult time adjusting to communal living, but knows it’s the best thing for him. In addition to a house manager who spends a great deal of time working with and advocating for the clients, a caregiver is always on duty to cook meals, give out medications, keep the house clean in order to prevent infections, coordinate with doctors, set up rides, and provide conversation for the clients.
While he hopes to return to independent living, Michael’s not yet ready. He’s stable, but he says living with AIDS is hard. Michael no longer thinks of his disease as sad, just something he deals with. “Being depressed takes a toll on you,” he says. “It’s bad for your health. My suggestion to anyone living with the illness is keep yourself motivated. Keep yourself occupied. Keep yourself going. Don’t sit around thinking about the illness. Do something out there, even volunteer work. Just take it day by day.”
Another of the home’s residents, Hannah, has taken this sort of advice to heart. Soon to be 27, she’s been living with HIV for 11 years, since she was an adolescent. Sitting outside a local health food store, Hannah says she doesn’t have a lot of time today, because she has a doctor’s appointment in an hour. She’s also been working with an organization for people living with mental illness, which takes up a great deal of her time.
Hannah has been living with mental illness for even longer than the immune disorder. Struggling with depression at age 15, she was admitted to John Umstead Hospital, a state mental institution in Butner. There she received the news that she was HIV positive. She had not used drugs, and had only briefly experimented with sex, so she was pretty confident she knew where she had gotten the virus.
At 15, not long before her teachers intervened because of a subtle drop in grades, Hannah began to drink locally made hard liquor with the people she grew up with in a trailer park on the Orange-Chatham county line. She wishes her family had lived elsewhere, she says, somewhere with more privacy, away from bad influences. “Everybody there would have done better without some people there. On our block, the whole block was quiet–nice trailers, nice cars, everything–but on the other block, or other side, it was all these raggedy, scaggle-muffins always hanging out.”
Hannah met a guy through a mutual friend in the neighborhood. “Everybody was experimenting with sex at that time,” she remembers. “Nobody knows who’s got what.” This man told her he was 18. They were drinking with others, and as Hannah tells it, “things happened.” Later, during a confrontation, the “18-year-old boy” revealed that he was actually 28, had a wife, and was infected with HIV. When Hannah speaks of the incident, she almost whispers, as if it’s a ghostly memory. Eyes shifting downward, she says softly that this was the only guy she had dated. Though Hannah knew about HIV from hearing about Magic Johnson’s story, she hadn’t considered the possibility of getting it herself.
Now 26, this energetic woman lives in this group home for people living with HIV/AIDS. She appreciates the home because there’s so little government subsidized or group housing available. Heather is well-read on policy issues affecting her, and says she’s concerned about decisions coming up that may reduce funding for group homes, and raise the price of medications. “We can’t afford much more,” she says, as she contemplates protest.
Heather’s first sexual encounter changed her in many ways, not the least of which is her sexual habits. She playfully tells me stories about her “best friend.” She hasn’t dated other men since the encounter that gave her the virus, and she’s openly a lesbian now. She doesn’t have a girlfriend, but a best friend, she says, is “as close as you can get.” And that’s just fine for her.
Janice and I sit in the main living room of the home. Her energy level is low these days, but she’s enthusiastic about the interview, as if she needs to relieve herself of a weight. She sits back in the plush purple sofa, which nearly matches the bandanna she wears today. The color complements her fair freckled skin and red hair. But the bandanna is more than a fashion statement; it covers the hair loss she’s enduring for reasons the doctors can’t explain.
Although the hair loss is disturbing to this woman in her mid-30s, the most pressing thing on her mind is her 13-year-old daughter whom she is unable to see. The girl lives with the family of an old friend who feels it’s better to keep them apart while Janice is so sick. This woman had been a close friend and adopted the child several years ago when Janice and her husband–the child’s father–were struggling with addiction to dilaudid. “I want to get a place and take care of her. Some say I can do it, but most say I can’t,” she says, tears welling in her eyes.
Janice’s husband eventually went to prison for robbing houses to support his drug habit. She found a new boyfriend, by which time she’d stopped shooting up, but had switched to cocaine. Smoking it became a method of choice. It was during this period that Janice became ill. Upon admittance to a hospital, she was immediately given an HIV test, which came back positive.
“He had it, he knew he had it. He had had it for years,” she says, through gritted teeth. “I don’t hate him for it. I’ve asked him why he did this to me and he’s never made a comment. He’s never apologized. He’s never denied it.” According to Janice, her boyfriend was already undergoing treatment for HIV before she was diagnosed, but she hadn’t understood the secrecy behind his visits to the doctor until then.
Janice has been clean for two years, but is openly an addict and still struggles with the desire to escape reality. “It’s very hard. Some days you wake up and look at yourself in the mirror and say ‘Damn, I don’t want to deal with today. I’d rather be somewhere in the corner, high, not dealing with this shit today.’” But she says she’s come far enough to understand the reality of that choice. “I’ve got to see that picture like a film, run it all the way through. I take that first hit, that first puff, where’s it going to end up. I’ll end up not living here with no place to go. My daughter’s not going to talk to me. I’m not going to have a care team, no place to live. My mama’s not going to take me back. I’ll end up homeless. And if I was to get an apartment to live with my daughter and I was to get high, I wouldn’t keep that apartment long.”
Michael, Hannah and Janice continue to struggle, but they are also able to experience some of life’s pleasures. After showing me the watermelon patch that he recently planted behind the home, Michael informs me that his mother and sister are visiting this weekend. He’s enthusiastic about the visit, but also a little anxious.
“My mother could walk through that door right now, and the first thing’s she’s going to do is bust out crying,” he says. He wishes she wouldn’t get upset because he feels it’s not healthy for either of them. Although he too was depressed when he was first diagnosed, he’s come to terms with it. “I don’t think of my illness that way. It’s going to be all right,” he says. But, as Michael tells it, when he tells his mother that there’s nothing to worry about, she says, “But you’re my baby. You were my last.”
While this home may not be what Michael’s mother would have wished for her son, in many ways it’s the best option available for him. Homeless shelters don’t meet the sanitary requirements for people living with HIV/AIDS, and living with relatives can put a strain on families.
And there is another benefit to living here. In a plot next to Michael’s vegetable garden rest the markers of all those who’ve died while living in this home. The markers list the name of each resident and the date of their death. Whether the residents have come here to get well enough to achieve a modicum of independence or whether, like those represented on these markers, they’ve come to spend their final days, the home is a place where they can come to terms with their pasts and what brought them here. The home is the one place where they can talk about their lives without fearing judgment. It’s a place, finally, to achieve some peace.