Women with HIV, after years of isolation, coming out of shadows

Schools, 59, lives in Emeryville near the foot of the Bay Bridge, walking distance from a Nordstrom Rack and other big chain stores she can’t afford. Off and on since April, her granddaughter has lived there too, sleeping on a blow-up mattress with Schools’ daughter and son-in-law and another grandchild.

Five is too many for the one-bedroom apartment. But they’re family. They kept her going during the worst times, and that she can help them now is a blessing.

Nearly 20 years ago, when Schools was diagnosed with HIV, it was her daughter Bonnie — then 12 and living in foster care — who gave her hope, saying, “Mama, you don’t have to worry. You’re not going to die, you’re going to be able to live a long, long time.”

“It was her that gave me the push and the courage to keep on,” Schools said.

She had contracted HIV from a man who’d been in jail, who beat her repeatedly until she fled. By then she’d already left another abusive relationship and lost all four of her daughters to child protective services. HIV was just one more burden.

At the time, the disease was a death sentence. That Schools is still here — helping her family, getting to know her grandchildren — is wonderful, she said. But for her, as with tens of thousands of others who have lived two decades or more with HIV, survival comes with its own hardships.

Gay men made up the bulk of the casualties of the early AIDS epidemic, and as the male survivors grow older, they’re dealing with profound complications, including physical and mental health problems. But the women have their own loads to bear.

Whereas gay men were at risk simply by being gay, women often were infected through intravenous drug use or sex work, or by male partners who lied about having unsafe sex with other men. The same issues that put them at risk for HIV made their very survival a challenge.

Today, many women like Schools who are long-term survivors cope with challenges caused or compounded by HIV: financial and housing insecurity, depression and anxiety, physical disability and emotional isolation.

“We’re talking about mostly women of color, living in poverty,” said Naina Khanna, executive director of Oakland’s Positive Women’s Network, a national advocacy group for women with HIV. “And there’s not really a social safety net for them. Gay men diagnosed with HIV already historically had a built-in community to lean on. Women tend to be more isolated around their diagnosis.”

There are far fewer women aging with HIV than men. In San Francisco, nearly 10,000 people age 50 or older are living with HIV; about 500 are women. Not all women survivors have histories of trauma and abuse, of course, and many have done well in spite of their diagnosis.

But studies have found that women with HIV are more than twice as likely as the average American woman to have suffered domestic violence. They have higher rates of mental illness and substance abuse.

What keeps them going now, decades after their diagnoses, varies widely. For some, connections with their families, especially their now-adult children, are critical. For others, HIV advocacy work keeps them motivated and hopeful.

Patti Radigan was living in a cardboard box on South Van Ness Avenue in San Francisco when she tested positive in 1992. By then, she’d lost her husband to a heart attack while a young mother, and not long after that she lost her daughter, too, when her drug use got out of control and her sister-in-law took in the child.

She turned to prostitution in the late 1980s to support a heroin addiction. She’d heard of HIV by then and knew it was deadly. She’d seen people on the streets in the Mission where she worked, wasting away and then disappearing altogether. But she still thought of it as something that affected gay men, not women, even those living on the margins.

Women then, and now, were much more likely than men to contract HIV from intravenous drug use rather than sex — though in Radigan’s case, it could have been either. IV drug use is the cause of transmission for nearly half of all women, according to San Francisco public health reports. It’s the cause for less than 20 percent for men.

Still, when Radigan finally got tested, it wasn’t because she was worried she might be positive, but because the clinic was offering subjects $20. She needed the cash for drugs.

She was scared enough after the diagnosis — and then she got pregnant. It was the early 1990s, and HIV experts at UCSF were just starting to believe they could finesse women through pregnancy and help them deliver healthy babies. Today, it’s widely understood that women with HIV can safely have children; San Francisco hasn’t seen a baby born with HIV since 2004.

But in the 1990s, getting pregnant was considered selfish — even if the baby survived, its mother most certainly wouldn’t live long enough to raise her. For women infected at the time, having children was something else they had to give up.

And so Radigan had an abortion. But she got pregnant again in 1995, and she was desperate to have this child. She was living by then with 10 gay men in a boarding house for recovering addicts. Bracing herself for an onslaught of criticism, she told her housemates. First they were quiet, then someone yelled, “Oh my God, we’re having a baby!”

“It was like having 10 big brothers,” Radigan said, smiling at the memory. Buoyed by their support, she kept the pregnancy and had a healthy girl.

Radigan is 59 now; her daughter, Angelica Tom, is 20. They both live in San Francisco after moving to the East Coast for a while. It was because of her daughter that Radigan stayed sober, that she consistently took her meds, and that she went back to school to tend to her future.

For a long time she told people she just wanted to live long enough to see her daughter graduate high school. Now her daughter is in art school and Radigan is healthy enough to hold a part-time job, to lead yoga classes on weekends, to go out with friends for a Friday night concert.

“Because of HIV, I thought I was never going to do a lot of things,” Radigan said. “The universe is aligning for me. And now I feel like I deserve it. For a long time, I didn’t feel like I deserved anything.”

Anita Schools got tested for HIV because her ex-boyfriend kept telling her she should. That should have been a warning sign, she knows now.

She was first diagnosed in 1998 at a neighborhood clinic in Oakland, but it took two more tests at San Francisco General Hospital for her to accept she was positive. People told her that HIV wasn’t necessarily fatal, but she had trouble believing she was going to live. All she could think was, “Why me? What did I do?”

It was only after her daughter Bonnie reassured her that Schools started to think beyond the immediate anxiety and anger. She joined a support group for HIV-positive women, finding comfort in their stories and shared experiences. Ten years later, she was leading her own group.

She’s never had problems with drugs or alcohol, and she has a network of friends and family for emotional support, she said. Even the HIV hasn’t hit her too hard, physically, though the drugs to treat it have attacked her kidneys, leaving her ill and fatigued.

Like so many of the women she advises in her support group, Schools is most troubled by her finances. She gets by on Social Security and has bounced among Section 8 housing all over the Bay Area for most of her adult life.

Schools’ current apartment is supposed to be permanent, but she worries she could lose it if her daughter’s family stays with her too long. So earlier this month they moved out and are now sleeping in homeless shelters or, some nights, in their car. She hates letting them leave but doesn’t feel she has any other choice.

Reports show that women with HIV are far more likely to live in poverty than men. Khanna, with the Positive Women’s Network, said surveys of her members found that 85 percent make less than $25,000 a year, and roughly half take home less than $10,000.

Schools can’t always afford the bus or BART tickets she needs to get to doctor appointments and support group meetings, relying instead on rides from friends — or sometimes skipping events altogether. She gets her food primarily from food banks. Her wardrobe is dominated by T-shirts she gets from the HIV organizations with which she volunteers.

“With Social Security, $889 a month, that ain’t enough,” Schools said. “You got to pay your rent, and then PG&E, and then you got to pay your cell phone, buy clothes — it’s all hard.”

At a time when other women her age might be thinking about retirement or at least slowing down, advocacy work has taken over Schools’ life. She speaks out for women with HIV and their needs, demanding financial and health resources for them. In her support group and at AIDS conferences, she offers her story of survival as a sort of jagged road map for other women struggling to navigate the complex warren of services they’ll need to get by.

The work gives her confidence and purpose. She feels she can directly influence women’s lives in a way that seemed beyond her when she was young, unemployed and directionless.

“As long as I’m getting help and support,” Schools said, “I want to help other women — help them get somewhere.”

Billie Cooper is tall and striking, loud and brash. Her makeup is polished, her nails flawless. She is, she says with a booming laugh that makes heads turn, “the ultimate senior woman.”

For Cooper, 58, HIV was transformative. Like Radigan, she had to find her way out from under addiction and prostitution to get healthy, and stay healthy. Like Schools, she came to understand the importance of role-modeling and advocacy.

Cooper arrived in San Francisco in the summer of 1980 — almost a year to the day before the first reports of HIV surfaced in the United States. She was fresh out of the Navy and eager to explore her gender identity and sexuality in San Francisco’s burgeoning gay and transgender communities.

Growing up in Philadelphia, she’d known she was different from the boys around her, though it was decades before she found the language to express it and identified as a transgender woman. But seeing the “divas on Post Street, the ladies in the Tenderloin, the transsexual women prostituting on Eddy” — Cooper was awestruck.

She slipped quickly into prostitution and drug use. When she tested positive in 1985, she wasn’t surprised and barely wasted a thought worrying about what it meant for her future — or whether she’d have any future at all.

“I felt as though I still had to keep it moving,” Cooper said. “I didn’t slow down and cry or nothing.”

Transgender women have always been at heightened risk of HIV. Some studies have found that more than 1 in 5 transgender women is infected, and today about 340 HIV-positive trans women live in San Francisco.

What makes them more vulnerable is complicated. Trans women often have less access to health care and less stable housing than others, and they face higher rates of drug addiction and sexual violence, all of which are associated with risk of HIV infection.

Cooper was homeless off and on through the 1980s and ’90s, trapped in a world of drugs and sex work that felt glamorous at the time but in hindsight was crippling. “I was doing things out of loneliness,” she said, “and I was doing things to feel love. That’s why I prostituted, why I did drugs.”

She began to clean up around 2000, though it would take five or six years to fully quit using. She found a permanent place to live. She collected Social Security. She started working in support services for other transgender women battling HIV. In 2013, she founded TransLife, a support group at the San Francisco AIDS Foundation.

“I was coming out as the activist, the warrior, the determined woman I was always meant to be,” she said.

Cooper never developed any of the common, often fatal complications of HIV — including opportunistic infections like pneumonia — that killed millions in the 1980s and 1990s. But she does have neuropathy, an HIV-related nerve condition that causes a constant pins-and-needles sensation in her feet and legs and sometimes makes it hard to walk.

Far more traumatic for her was her cancer diagnosis in 2006. The cancer, which may have been related to HIV, was isolated to her left eye, but after traditional therapies failed, the eye was surgically removed on Thanksgiving Day in 2009.

The cancer and the loss of her eye was a devastating setback for a woman who had always focused on her appearance, on looking as gorgeous as the transgender women she so admired in the Tenderloin, on being loved and wanted for her beauty.

Rising from that loss has been difficult, she said. And she’s continued to suffer new health problems, including blood clots in one of her legs. Recently, she’s fallen several times, in frightening episodes that may be related to the clots, the HIV or something else entirely.

Since Thanksgiving she’s been in and out of the hospital, and though she tries to stay upbeat, it’s clearly trying her patience.

But if HIV and cancer and everything else have tested Cooper’s survival in ways she never anticipated, these trials also have strengthened her resolve. She’s becoming the person she always wanted to be.

“A week before they took my eye, I got my breasts,” she said coyly one recent afternoon, thrusting out her chest. Behind the sunglasses she wears almost constantly now, she was smiling and crying, all at once.

Aging with HIV has been strangely calming, in some ways, giving her a confidence that in her wild youth was elusive.

Now she exults in being a respected elder in the HIV and transgender communities. She loves it when people open doors for her or help her cross the street, offer to carry her bags or give up a seat on a bus.

Simply, she said, “I love being Ms. Billie Cooper.”

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