Planning home-grown solutions for long-term care
Vanessa Johnson, 63
“Do you know how different my life would be if they hadn’t told me I’d [die young]?” Vanessa Johnson said, speaking of her and countless others’ lack of a plan or resources for eldercare.
Johnson’s adolescent fantasies for a life of adventure and a comfortable older age were shattered in 1990 when she learned she had acquired HIV. Though relieved that she hadn’t passed on the virus to her son, then a toddler, she was traumatized by the news she’d be lucky to survive more than a few years.
Fortunately, effective combination antiretroviral therapy arrived in time to give her decades of life she’d assumed were forgone. Now 63, Johnson is once again contemplating infirmity and death. But this time, it’s not HIV-related sickness that fuels her anxiety. Instead, she worries about a future like that of her mother who, at 84, is disabled by garden-variety age-related health complaints—and Johnson wonders who will take care of her.
“When you’re coming into your life, somebody’s got to take care of you,” she said, “and then when you’re leaving, somebody’s got to take care of you, too.” Johnson says the need for care doesn’t frighten her. What does is being dependent on people who don’t do it properly, which she believes demands patience and kindness. She points to the reverence for the elderly found in some traditional Asian cultures as a model.
She intends to take her son, now 36, to therapy to work out how they’d both feel about her care needs and whether he’s up to the challenge, and she strongly encourages others with HIV to do likewise. She’s clear that it’ll be okay if he doesn’t think he can do it, but she wants him to work with her on a backup plan.
That plan could very well be a home-grown commune of sorts: a large house where she and a group of other Black women with HIV with whom she shares a special bond could live with and care for one another. Alongside the shared experience of HIV, she feels the supportive sisterhood between Black women—who often take on the exhausting role of protector in their communities—to be incredibly precious.
“We fuss, and we fight,” she said, “but we get energy from each other, and when you’re around your own people, you don’t have to explain anything.”
Making this dream a reality is not without challenges, however. Johnson, who holds a law degree and is a co-founder of Ribbon Consulting Group, is intimately familiar with the brand of bureaucracy that can stifle innovative non-traditional projects before they begin.
“It gets to a point,” she said, “where you’ve got to say, we don’t need another study to tell me what I already know I need.”
Johnson is particularly uneasy about projects that funnel resources toward medical and social services at the expense of existing social networks. For example, how helpful will it be to provide safe housing for someone if it’s located so far away from friends, family, and community that it leaves them socially isolated?
She worries particularly for African Americans, whose communities and families have been forced to endure nearly continuous disruptions—beginning centuries ago with the forced passage from Africa to the Americas, to slavery, Jim Crow, and racist social and legal policies that still limit Black lives.
“When I was growing up, if Big Momma decided she was going to tell your momma about you acting up, you knew you had a problem,” said Johnson. For her, that’s love—a sign that a community is so tightly bound that its members feel responsible for each other’s wellbeing. She admits she does the same now with kids on her own block, and when her son gets embarrassed and tells her, “Mom, you can’t do that,” she just smiles, knowing she’s contributing to a culture devoted to survival.
Los Angeles, CA
Focusing on living—and nurturing a new generation
Lynnea Lawson, 35
Like many who acquired HIV at birth, Lynnea Lawson belongs to a group who contracted the virus in the 1980s and 1990s yet survived into adulthood. These young people, now in their 20s and 30s, share many of the physical, mental, and emotional challenges we see in other long-term survivors who are now in their 50s, 60s, and 70s. That’s requiring our community to rethink what it means to “age” with HIV.
For Lawson, it’s the psychological and emotional scars she carries, more than the physical consequences of having the virus, that have demanded the most attention. Still, she’s also learned that healing can come from the most unlikely people and places.
Like many long-term HIV survivors, regardless of age, Lawson had carried the belief that you’ve got to settle for whatever you can get because anything good (including life itself) can be taken away at a moment’s notice. A late-night call she placed roughly nine years ago to “the other woman” of her then-boyfriend was her unanticipated catalyst for healing. She had come home after a long day at work to find the boyfriend on the couch, pointedly ignoring his phone which was buzzing nonstop with text messages. She played it cool, letting him fall asleep before opening his phone and seeing a message from another woman.
Lawson looks back on the momentous decision to call the woman—whose name is Marneta, and whom she now counts as her best friend—as a radical turning point in life. “The last thing she told me before we got off the phone was to delete her number from his phone and add it to mine,” Lawson remarked.
The next day, openly weeping while walking down the street, something inside compelled her to give the woman another call and tell her she’d taken her advice and dumped the boyfriend. Lawson recalls that Marneta—still practically a stranger at the time—dropped everything to come and comfort her.
The experience, said Lawson, taught her that “families, by blood or by choice, come into our lives by accident”—and that you’ve got to be ready to take the risk of opening yourself up to receive the grace they can bring.
At the outset of their friendship, Lawson, who has struggled with post-traumatic stress disorder (PTSD), depression, and anxiety since childhood, said her spirit remained buried beneath stigma and fear over her HIV status, questioning her future, and certain she’d never have a child, which she’d always wanted.
“It’s that stigma that we put on ourselves that’s way worse than the stigma we get from out in the world,” she said. “If you’re already telling yourself how awful you are, you only need to hear a little bit more from outside yourself for it to be too much.”
When Marneta became pregnant, she asked Lawson what her own plans around motherhood were. Lawson said she told her, “I don’t think I can ever have a child because I’m HIV positive.” Her friend didn’t hesitate to reply, “You can have mine. We’ll share him.” She asked Lawson to be her son’s godmother.
“I thought, if I’m going to be someone’s godmom, I’ve got to lead by example,” said Lawson. “I’ve got to stop focusing on dying and instead focus on living, because I’ve got this little boy coming who I’m going to be partially responsible for.”
Within a couple of years, Lawson decided to have a child of her own, knowing that HIV medications for mother and child can reduce the risk of HIV transmission during birth to less than one percent. Her daughter, Nae’lyn, was born without HIV in 2014 (see “Born Free”, POSITIVELY AWARE January+February 2020).
Despite decades of survival, having a beautiful daughter, being a loving mother and best friend, and making progress toward a college degree in psychology, Lawson continues to be haunted by depression, anxiety, and PTSD. The dearth of effective and affordable mental health care has left her lacking some of the support she’d like to have.
Nevertheless, she says, her life is so much bigger and better than she imagined when she kept her HIV status a secret. She now thinks nothing of telling work colleagues, and doesn’t hesitate to bring up her status when dating.“I just met some guy on Facebook Dating, and I was like, Oh yeah, I’m HIV positive, and if you have a problem with that, let me know now so we can get past it,” she said. The guy told her it was no big deal, that he was definitely interested.
She laughs when recounting the chat. “Just being open and accepting people into your life, whoever they are and wherever they are,” she said, “that’s medicine. It’s better than any pill.”
Finding intimacy, trust, and community
Billie Collins, 53
Billie Collins is grateful this past year to have been surrounded by the diverse community of people living with HIV who make up the neighbors in her supportive housing complex. Although restrictions due to the coronavirus nixed all large gatherings, she and her neighbors got the better of social isolation by spending time outdoors, binge-watching movies over popcorn only with close friends, and checking in on each other more often.
Collins says her current life—and the fact that she enjoys it—is a surprising departure from the future she’d imagined before her fiancé’s HIV diagnosis led her to be tested in 1996 at age 24. At the time, she said, she essentially shut down. “I cleaned up after myself and kept to myself, but I was scared and afraid,” she recalled.
Despite the desire for companionship, and the significant stigma around HIV, her fiancé had shattered her trust about men living with the virus, and she went on to fall in love with and marry a man who was not living with HIV.
“He did genuinely love me,” she mused, “but he could never get over the hurdle of everything to do with my status.”
Her husband’s concerns about transmission led them to lead a “non-intimate life.” When Collins ultimately began volunteering at HIV organizations and being more open about her status, things grew worse.
She’d met a bright, young, and passionate health educator who taught and encouraged her to be more proactive about her health and the rest of her life.
“I was volunteering for a lot of different agencies, and I was becoming more and more public, and I lost my marriage in the process,” she said.
Collins came to know and befriend other cisgender women living with HIV, as well as gay men and transgender women. Without realizing it, her beliefs about what might constitute an emotionally safe romantic partner had grown to include men living with HIV.
Although she says she shares the longing that many of her neighbors in the housing complex have for romantic companionship, she’s alert to the tendency she sees in herself and others to compromise too much for partnership.
“Sometimes we settle for a little less than perfect not to be alone, or we get up in age, and the medical issues start to happen,” she said. “You don’t want to be there alone and having to brave your way through it by yourself.”
Over the past two years, Collins has been confronted with her biggest health challenge since testing positive. She said if you’d asked her back in 2018, she’d have told you she never even got a cold or a headache. Then she was diagnosed with pancreatic cancer. She said she tries not to let it get her down, reflecting that “everybody has to take their turn,” but it has affected how she sees the future.
On the plus side, she’s currently dating a man who has also been living with HIV for decades. There’s an emotional intimacy that comes with that, she said—and she might not have opened herself up to the friends she’s gained had she not been ill.
Her brush with a type of cancer that is so highly fatal has left her all too aware that nothing is forever. She’s glad to have someone with whom she can disclose more—someone who, she said, “can walk down that path with me.”
David Evans is a longtime HIV science advocate and educator. His written work for the HIV community has appeared in POSITIVELY AWARE, AIDSmeds, POZ, and TheBody.com. His scientific work on HIV cure has appeared in top medical journals.