By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
By Eric Nicholson
He can't be more than 18 or 19, brown hair, tight T-shirt, tighter jeans, light blue eyes that have yet to be deadened by the street. It's obvious what he wants: a quick hustle, sex for money, drugs, his next meal. Yet he approaches Neal Shaffer with some caution. Maybe he pauses because of the time and place: a balmy September afternoon behind "the strip" on Cedar Springs Road in the parking lot of the AIDS food pantry. Maybe it's Shaffer's gait, which is slowed considerably by nerve damage that even morphine can't relieve. Or maybe it's Shaffer's black tote bag, standard issue for all pantry consumers and the mark of an AIDS survivor on the dole.
"Hey, can I talk to you for a second?" the boy finally says.
"Why? I don't have any money. I am here for the food pantry."
"Oh, this is that AIDS place, isn't it?" says the boy, referring to the AIDS Resource Center sign posted on the rear of the mostly pink brick building.
Shaffer nods his head, wondering if playing dumb is part of the kid's come-on.
"If I go in there, will they give me free food?" asks the boy.
"It's not that easy," Shaffer says. "You have to have AIDS before they let you have food."
"I hear AIDS isn't so bad," says the boy. "You just take some medicine, and they give you lots of free stuff."
Shaffer may be feeling fatigued, but a look of shock still registers on his face. "Believe me, it's not a good thing. It hurts; it hurts a lot. Don't be fooled. It's not something you want to get."
The boy smiles coyly. "The only thing I'm going to get fooled by is fucking someone and not getting paid for it."
"You do what you have to do," Shaffer tells him. "Just make sure you wear protection."
"But then I can't feel it," says the boy, obviously trying to entice. "I like to feel it."
There was a time when Shaffer had both the strength and the inclination for this kind of play, but not anymore. He has been sick too long, he has been celibate too long, and he begins to walk away. "Trust me," he says. "AIDS sucks."
"Something profound has occurred within the last few months," claimed Andrew Sullivan, the Times writer, who is HIV-positive. That something was the availability of a new class of drugs in the AIDS pipeline, protease inhibitors, which suppress the irascible human immunodeficiency virus to undetectable levels in the blood, particularly when mixed in combination with another class of antiretroviral drugs already on the market.
These "cocktails" weren't a cure, but the drugs seemed to bring the dead back to life. HIV-positives whose disease had progressed to full-blown AIDS and who had been wasting away--their emaciated skin marked by legions of lesions, their internal organs an opportunity for parasites of all persuasions--got their cocktails and got better. Overnight, it seemed, man had conquered nature, and gay man, whose friends and lovers were the first and foremost to be decimated by the disease, reaped the benefits. Although prohibitively expensive, these powerful medications gave hope to all positives--primarily gays, IV drug users and recipients of tainted blood. Told they had only months to live, they were suddenly reborn by a medical miracle that might renew their lives for 30 years or better.
The numbers told the story: According to the Centers for Disease Control and Prevention, in two years following the introduction of the cocktails, AIDS-related deaths in the United States dropped a startling 62 percent. Hysteria over the epidemic began to wane as prevention messages began to sink in. A condom for all occasions became the unyielding mantra of safe-sex advocates, and new AIDS cases began to level off at 40,000 a year down from a peak of more than 80,000. The disease seemed to be someone else's problem, that of poor souls in Africa, where a devastating strain of the virus was killing millions and rates of infection staggered the conscience. What was once a death sentence in this country had become a manageable, chronic illness like diabetes or high blood pressure. Or so we were told.
What was left largely untold was how difficult the virus was to manage. The new medications might save lives, but they were a bitch to take. Cocktails required strict adherence to a daily regimen of about 20 pills. Miss a few doses, and the virus was unforgiving. It might multiply and mutate, this time roaring back by the millions to stalk the immune system with a strain resistant to the original therapy. New cocktails would have to be ordered with the hope that science would always stay one step ahead of the disease.
Because the Food and Drug Administration had humanely fast-tracked its approval (under pressure from AIDS activists), not much was known about the medications' side effects, and what was known was downplayed. Nausea, vomiting and intractable diarrhea made life with cocktails (also known as highly active antiretroviral therapy, or HAART) as unpredictable as it was unpleasant. Killer opportunistic infections such as Kaposi's sarcoma and pneumocystis carinii pneumonia (PCP) seemed a tragic footnote in AIDS' brief history, but with cocktails came freaky tales of fat redistribution and increased risks for diabetes and heart attack as well as renal and pancreatic damage.
Assisted by steroids, cosmetic surgery and renewed determination, patients often kept these toxic side effects from public view. What was seen instead were positives returning to work, getting off of disability and managing just fine. In controversial ads, drug companies portrayed positive men climbing mountains, riding bikes and engaging in romantic liaisons--just like everyday queer folk. But it wasn't just the drug companies that depicted the life of an HIV-positive as nothing out of the ordinary. An entire culture of AIDS service agencies grew up around the epidemic, dedicated to bringing normalcy to economically disadvantaged positives by providing them with food, clothing, counseling, housing, transportation and medical care. Not only had the disease galvanized the gay community like never before, it began to whittle away at old homophobic hatreds. While some heterosexuals continued to stigmatize and discriminate, others became more accepting of gays, their rights and their relationships. "The victimization of gay men by a disease paradoxically undercut their victimization by a culture," wrote Sullivan in his Times article. "There was no need to kick them, when they were already down."
A new mythology grew up around the disease and its new drugs, one that bred complacency as well as denial. Because the next generation of gay men didn't know many people who had died from AIDS, their fear of the disease seemed diminished. "There is a false complacency that comes from seeing your friends on meds and they are doing well," says Melissa Grove, the executive director of the Legacy Counseling Center, the largest provider of HIV counseling services in Dallas. "And you start to think, 'Hey, if I get the disease, it wouldn't be the worst thing.'" If getting AIDS was as normal as depicted, why even worry about safe sex, especially when you could pop a few pills and feel fine?
Other men, gay and straight, tired of safe-sex messages and found rationales to swear off condoms: a need for intimacy, a fear of rejection, a sense of invincibility. Certainly for some in the gay community, there was a push toward monogamy, but for others, illicit drugs, the Internet and a willful blindness about transmission all conspired to justify a return to the promiscuity of the past, where anonymous and casual sex were no big deal. And denial ran deep in minority communities where the stigma from the disease was as daunting as the disease itself. (That stigma is still enough of a concern that all the HIV-positive individuals interviewed in this article except one agreed to participate only if given pseudonyms.)
By 2002, the numbers began to tell a different story: For the first time in a decade, the number of AIDS cases rose in the United States. From 2001 to 2002, new HIV infections among gay and bisexual men in the 25 states with long-standing HIV reporting procedures increased by 7.1 percent. More than 50 percent of all new AIDS cases were in the African-American community, and more than 64 percent of women with AIDS were black. Based on findings released in September by Dallas County Health and Human Services, new HIV infections have grown steadily since 1999 in Dallas County, which now records the greatest number of new cases in the state. Some epidemiologists believe it's too soon to tell if the disease is resurgent, while many speak with growing alarm that the plague is staging a comeback.
And yet no pristine epidemiological category--men having sex with men, IV drug users, women of color, heterosexual men--can capture the anguish and the actuality of the disease. Life with cocktails is messy and rigid and irrational and tragic. It saps the spirit and the bank account and magnifies the stress of everyday living exponentially. And it can best be told not through cold numbers, but rather through the lives of the people who live it.
There is a brief window in the morning when he feels good--good about himself, good about his health, good about not dying. It only lasts a few minutes, until he starts taking his medications. That's when Neal Shaffer begins swallowing his 19-pill cocktail, a combination of protease inhibitors (PIs), nucleoside analogues (nukes), non-nucleosides (non-nukes)--the three classes of antiretroviral drugs, which attack the virus' ability to reproduce.
Some doses are taken in the morning, others in the evening, some before meals or after. His nausea, headaches and vomiting arrive early or not at all. It's the not knowing that's the worst, not being able to anticipate whatever side effects his regimen might bring. "It's what keeps me from getting a real job," he says. "Sometimes the best I can do is to get back into bed."
At 43, Shaffer is a long-term survivor, which is the true source of much of his pain. "People who began treatment 10 to 15 years ago are in the worst shape today," says Dr. Louis Sloan, a Dallas infectious disease specialist with a high volume of HIV/AIDS patients. "Not only because their immune system may be more damaged, but also because we didn't have the medicines back then that we do now."
When Shaffer was diagnosed with AIDS in 1993, he was a marketing director for a physical therapy clinic. He had no symptoms but agreed to get tested to induce his best friend, who he felt was "very promiscuous," to do the same. "He turns out to be negative, and I am the one who was positive," Shaffer says. "I was devastated."
He then submitted to another blood test, which counts the number of T-cells in a drop of blood. T-cells are a type of white blood cell that directs the immune system to fend off disease-causing bacteria, parasites and viruses. HIV, a cagey virus, hides from these T-cells before seeking them out and invading them. The virus then forces each infected cell to do its bidding by making millions of deadly copies of itself. It then mercilessly kills off each infected T-cell, whose reduced numbers indicate the amount of damage done to the immune system. A normal count is anywhere from 500 to 1,500 T-cells in a cubic millimeter of blood (about a drop). A person with a T-cell count below 200 has already progressed to full-blown AIDS. Shaffer tested at 150. "I was told I had six months to live."
He had gone to great lengths to minimize his risk, as did the vast majority of the gay community whose obliging response to the safe-sex message was a triumph for public health in this country. Although he never believed public pronouncements that AIDS was a "gay plague," he stopped drinking and doing the club scene, stopped having anal sex, unprotected or otherwise, and started dating married men exclusively. At least 20 of his friends would die from the disease, and his daily habit of perusing the obituaries made him treat everyone as if they were positive. "Before I went out with anyone, I would ask to see their test results."
Little did he realize that he was already positive, had been since the mid-'80s. He had come out when he was a teenager, he says, when being gay was more like entering a secret society, one with its own language, culture and nightlife. He was drawn to that life, dancing until morning at Bayou Landing, a popular Dallas club where gays and straights mingled without inhibition. Too possessive to have a long-term relationship, he instead had a long string of lovers. He used sex as a challenge, a celebration, a way to feel good about himself. "It was like a game with me," he says. "I knew how to fix myself, and that was through conquest." He met new men wherever he went: at gas stations, in grocery stores, outside clubs. It fed his ego to have them; it also gave him AIDS.
His first symptoms nearly cost him his life. Two months after testing positive, he developed an opportunistic infection in his intestines that required surgery. He could no longer work and went on disability. His former employer continued to carry him on its health insurance for a year, but the insurance provider refused to pay for a new medication on the market, AZT, which it considered experimental. AZT (a nuke), the first drug developed to fight HIV/AIDS, works by interfering with an enzyme that the virus needs to create new copies of itself. Suddenly there was a wonder drug that could save Shaffer's life, but he couldn't afford it. The state had devised a lottery to dispense the drugs to a fortunate few, but he couldn't wait. "I bought some through the black market," Shaffer says. "There are patients out there who refuse to take their medicine and need money. You just have to find them."
Regrettably, AZT was not the medical miracle it promised to be. During the three years he took it, Shaffer's T-cell count dropped to six, and he fell victim to pneumocystis carinii pneumonia (for which he was hospitalized four times), tuberculosis (for which he was quarantined), shingles, anemia and neuropathy so unbearable even morphine failed to ease the burning and stinging in his nerve-damaged feet. "Some people thought the AZT was killing us," he says. "Too many people were dying while they were on it."
The problem was, AZT was no cure and acting alone not particularly good medicine. For a time, it would compromise the virus, but it would never completely suppress the viral load--the number of copies of the virus in a drop of blood. Eventually, HIV would mutate into another strain that was not only resistant to AZT but was also cross-resistant to similar drugs within the same nuke class that were being rapidly developed.
Because of his resistance, Shaffer qualified for a clinical trial to test the effectiveness of Norvir, one of a new class of drugs called protease inhibitors. Much like AZT, these drugs prevent the virus from replicating by inhibiting the action of protease, another vital HIV enzyme. When taken as part of a HAART cocktail of nukes and later non-nukes, they would blast the virus into submission. Though the virus still remained hidden in "safe sanctuaries" such as the brain and the lymph nodes, these cocktails could make HIV virtually undetectable in the blood. "Protease inhibitors literally saved my life," Shaffer says. "For the first time, I wasn't susceptible to opportunistic infections."
Protease inhibitors were initially so effective, it seemed as though an entire generation of AIDS patients were suddenly resurrected. "They would go from cadavers to looking like normal human beings," says Dr. Stacy Broun, a Dallas clinical psychologist who has worked with AIDS patients since the onset of the epidemic. "A lot of my patients, who were told they were going to die, had spent everything and gone on these wonderful cruises and vacations. Suddenly they were told they were going to live. They had no plans for the future. Life didn't hold out a lot for them." She counseled many patients who were depressed, even suicidal, others who felt guilty that they had survived their lovers and friends. "The good news was, they were going to live," she says. "The bad news was, the drugs might make them feel like crap."
Over time, the use of protease inhibitors became associated with a bizarre side effect called lipodystrophy syndrome. Patients reported odd accumulations of fat behind the neck (buffalo hump), around the abdomen (protease pouch) and on the chest (breast enlargement). "I looked like I was pregnant," Shaffer says. "I had a thick ring of fat around my neck and a double chin, but my legs looked thin, like a runner."
"We don't know what causes it, whether it's the drugs or the disease or a combination," says Dr. Dolores Peterson, an HIV researcher at UT Southwestern Medical School who has studied the syndrome. "We do know that between 20 to 50 percent of patients experience some form of the syndrome after they have been on HAART treatment for as many as five years. That is when we get the highest numbers."
Shaffer says he lost the excess fat after he developed a resistance to Norvir and discontinued its use. Every two years or so, despite his austere regimen, his virus multiplies and mutates. The new resistant strain must be beaten back with a different HAART cocktail. "Even if completely adherent, people who started on meds when AZT was all there was tend to develop resistances quickly," Dr. Peterson says. "In the old days, we didn't do combinations, and then the combinations we did do weren't powerful enough to suppress the virus completely. Those people still have it rough."
Shaffer has no job, no health insurance and no money. The Texas HIV Medication Program pays for his cocktails, which would otherwise cost him an estimated $16,000 a year. Despite his morphine-numbed neuropathy and a hip replacement that still causes him severe pain, he has no choice but to stand in long lines and wait: for food at the AIDS pantry, for medical care at Parkland Memorial Hospital's Amelia Court Clinic, for his medications at the county's outpatient pharmacy. It's the life of a subsidized AIDS patient--someone who is fearful that an overwhelmed bureaucracy is out to screw him, someone who is fighting for a future that seems out of his control. "I am just one step away from being hungry, homeless and having the lights turned off."
To Shaffer, complacency isn't about having unprotected sex, it's about people who wrongly believe the AIDS crisis is over, who have no clue that 15 people a month die an AIDS-related death in Dallas County alone. It's about AIDS agencies lacking funding because of a perceived lack of urgency and a 9-11 mentality that makes people too uncertain about their own future to be charitable to someone else's. It's about a budget-cutting Texas Legislature that last session tried and failed to reduce the rolls of HIV patients eligible for free medication, and will no doubt try again. And it's about an indigent health-care system that has told Neal Shaffer that he has run out of free pharmaceutical options if his medications fail him again.
And they will.
Boys at Play
At 24, Barry Warner's only exposure to the AIDS epidemic was watching the movie Philadelphia. He was too young to know anyone who had died one of those horrible AIDS deaths. His friends were gay, and they never talked about AIDS, never seemed to worry they might catch it. And if they did, so what? There were pills you could take, the next best thing to a cure. But that was nothing that concerned him, not until July when he learned he was infected with the virus.
His laissez-faire attitude toward the illness was several years in the making. After he came out at 18, he immediately left home and moved in with Jon, an older man who insisted on wearing condoms if he insisted on sex at all. Jon blamed his low sex drive on Warner, claiming Warner was "fat and unattractive" despite his classic good looks. Living with Jon wasn't easy, but neither was living with his adoptive parents, who wanted "the perfect child," says Warner, and instead "got a gay, alcoholic, drug-addicted one."
For three years, Warner remained monogamous, although Jon held no similar compunction, which might account for why he acted so "responsibly." The day Jon told him to leave, Jon had another lover in waiting. Warner was devastated and escaped to New Mexico, where he delivered pizza and got stoned simultaneously. "It was the best job I ever had," he says.
After nine months, he moved back to Oak Lawn, got a job waiting tables and immersed himself in the world of late-night clubbing, after-hours parties and drugs. "I used to have this saying," he recalls. "I have to go to work so I can buy some drugs so I can stay awake so I can go to work so I can buy some drugs so I can stay awake so..."
When you're speeding like a freak at four in the morning, there are just so many places you can go. If Wal-Mart got too boring, Warner might wind up at a local bathhouse known as Grandma's. "It was a playground for people who were totally fucked up on crystal meth and GHB," he says. "It was like a Candyland of unprotected sex."
But why risk infection when "use a condom every time" was still the clarion call of every AIDS prevention message? "We are talking about an epidemic connected to sex, and sex isn't always rational," says Douglas Shehan, an HIV researcher at UT Southwestern who coordinated an extensive survey of young gay men in Dallas. "Seventy percent of the guys surveyed didn't even perceive they were at risk for HIV infection, despite their risky behavior." A surprising "18 percent of the gay men surveyed in Dallas between the ages of 23 to 29 were infected with HIV, more than any other city studied, including New York." Fifty-three percent reported unprotected anal sex in the past six months, "an alarming marker of risk-taking," Shehan says.
Yet there is a growing feeling, particularly among younger gay men, that condom absolutism is as unreasonable as it is unpleasurable. It has created a "barebacking" backlash, which celebrates skin-on-skin sex as being more spontaneous and intimate than latex sex. Although this younger generation is still AIDS-aware, time and medicine have made them less terrified of the disease, less likely to use a condom because someone a decade ago didn't and died. Even for the fearful, a lifetime of safe sex could seem unrealistic and overly rigid. "When everything is prohibited and dangerous, people throw in the towel because adherence is impossible," says Dr. Walt Odets, a Berkeley, California, clinical psychologist and AIDS prevention expert.
With an estimated 300,000 people in this country who are unaware they are infected, the idea of qualifying the safe-sex message is an epidemiologist's worst nightmare. But the truth is, even unprotected anal intercourse carries no risk of HIV transmission if neither person is infected. The chance of getting HIV through oral sex is less likely than being struck by lightning. The risk of contracting HIV from someone testing positive is greatly reduced if his or her viral load is undetectable. "People take risks all the time for things they value," Odets says. "But the whole assumption behind prevention is that sex between men is some kind of recreational, superfluous activity, and it's not worth any risk at all. But gay men know it's emotionally completing and a very important, human part of their lives."
Barry Warner saw no value, however, in having sex at Grandma's--unprotected or otherwise--because he still felt vulnerable after his breakup and didn't want to risk rejection, even in a public bathhouse. He went deeper into his addiction, turning from using methamphetamines to selling them until he began mainlining his profits and found himself homeless and broke. "My life had turned to shit, and it was nothing I ever imagined for myself," he says.
He had just enough relationship left with his parents that they agreed to pay for his rehab, and he spent the next eight months among the newly sober. That's when his life began to change, he says, as well as his self-image. "I stopped thinking of myself as unattractive and started dating again."
Because he had "a hard time separating love from sex," he chose not to have sex with the men he dated. Instead, he began cruising the Internet, meeting men in chat rooms and leaving his apartment for late-night liaisons. These clandestine parties seemed a throwback to a more closeted age, but their anonymous nature made things more erotic and dangerous. No test results were compared before bodily fluids were exchanged, and no one talked about whether they were negative--or not.
"It is both parties' responsibility to disclose, as it should be in any sexual act," says Dr. Stephen Tankersley, a Dallas psychiatrist who has been treating HIV patients since 1984. "But if the person who is positive is not comfortable disclosing, he should make sure the sex is safe."
Warner claims he always wore protection, and besides, as long as he was the one on top, it was impossible to contract HIV--or so he thought. The truth is, it's less likely but still possible, particularly if the "asserter" has cuts or open sores on his penis.
In May, Warner chatted online with several men who were partying at the Oak Cliff house of a man named Gary, someone Warner had previously met on the Internet. That's why he felt comfortable going over there, even though "everyone was watching porno, talking online and getting sky-high on drugs." Warner remained sober and after a while paired off with another man. Preoccupied with getting a blow job, he says, he didn't see Gary, who "came out of nowhere and surprised me from behind." Gary wasn't wearing a condom and, in the heat of the moment, neglected to discuss his HIV status.
Three weeks later, Warner felt feverish and chilled, his head pounding with pain. When his symptoms didn't abate after five days, he went to the doctor, who suggested he might have HIV. Testing later confirmed his suspicions: Warner's viral load was soaring at a million; his T-cell count was down to 150.
While his numbers looked as though he had full-blown AIDS, he was suffering from acute retroviral syndrome (ARS), which occurs when the body goes from negative to positive. Although ARS typically resolves itself after a few weeks, with T-cells rising and viral loads falling, research suggests that if the virus is attacked before it can lodge in the harder-to-reach sanctuary sites, there is a better chance of staying healthier longer. People can live with HIV for an average of 10 years before their immune systems become seriously impaired.
Because Warner carries no health insurance, his doctor enrolled him in a clinical trial that provides him with free medicine for 18 months. He now takes an adherence-friendly cocktail--three tablets once a day--that would make pill-fatigued long-termers such as Neal Shaffer envious. Warner's prognosis is not unlike many of the newly infected. Assuming he adheres strictly to his regimen, doesn't develop drug resistances and the meds he uses aren't later discovered to cause any long-term toxicity, he should live a normal life. "So far, my side effects have been minimal," he says. "I do get really fatigued, and my stomach gets upset if I eat fatty foods, but I can live with that."
After the initial shock of his illness subsided, he met with friends at Starbucks and told them about his status. They were furious with Gary, but in true 12-step fashion, Warner took full responsibility for his risky behavior. He even went to dinner with Gary, who acted upset, claiming he just assumed Warner was also positive. Why else would he have put himself in that situation?
Not only did Warner forgive Gary, they also began to date. Warner felt a level of comfort and intimacy that came from their both being positive. There was no fear of the rejection that full disclosure might bring. They spent a lot of time together and grew closer, more trusting. With Gary, Warner felt he didn't have to worry about spreading the virus; there was a certain relief in knowing they were just two positives having unprotected sex.
Then a friend told Warner to log onto a Web site called barebackcity.com. He needed to check out the personals section, which included a posting from Gary. Next to his photograph, Gary wrote a description of himself, saying that he enjoyed bareback sex and was HIV-negative.
"I broke up with him after that," Warner says. "I knew he had infected other people."
He was a big hulk of a man who played football at the Los Angeles junior college they both attended. She had never been with anyone else, and she thought she would be with him forever. But when Shalonda Henderson (her real name) turned up pregnant, he wanted nothing to do with her, and she decided to have the baby on her own. Six months into the pregnancy, her doctor ran some tests and questioned her about the father, who was African-American, the same as her. Was he an IV drug user? Absolutely not. Could he have been gay or bisexual? She didn't think so. Did she know anyone who had pneumonia? She paused and said yes, the father; he'd been hospitalized with pneumonia a month earlier. The doctor said it was likely the father had HIV and had infected her as well.
Two years later she ran into him--she wanted him to admit what he had done. He only copped to being sick, said his new girlfriend and their baby also had the disease, claimed it was some kind of genetic blood disorder. "What kind of fool did he think I was?" she says. Since then, she has met many women who were infected by men, and "found out later that they were bisexual, which is probably what happened to me."
The problem of male-to-female heterosexual transmission is particularly daunting in the black community, and most notably in the South. People of color--African-Americans and Latinos--continue to fuel the epidemic, accounting for 70 percent of all new infections between July 1999 and June 2000, according to the Centers for Disease Control. The disease is also the leading cause of death for black women between the ages of 25 and 34.
"Let's cut to the chase," says Don Sneed, executive director of Renaissance III, a Dallas AIDS service agency primarily targeting black men. "There's a lot of internalized homophobia, guilt and shame revolving around same-sex behavior in the African-American community. It can be traced to the black church and culture, which treats homosexuality like the greatest sin since blasphemy. It keeps folks in denial, makes people less likely to test or seek treatment until they wind up in the emergency room."
"Men on the down-low," those who do not "self-identify" as gays or bisexuals but who secretly enjoy sex with other men, "comprise the majority of HIV transmissions to African-American women," says Sneed, who is also a member of the Presidential Advisory Council on HIV and AIDS. "Homosexuality and AIDS are still a very uncomfortable conversation in the black community in 2003. We would prefer to talk about women and children with AIDS; it's more pleasant because there's a true victim."
But in 1992, being pregnant and HIV-positive felt totally isolating for a young African-American woman. "No one in the black community was talking about AIDS," Henderson says. "It was still considered a gay man's disease." Her family was supportive, but they lived in Dallas. If there were HIV support groups for women--black, Anglo or otherwise--she didn't know about them. There were no medications to protect her unborn child from exposure, and she wasn't allowed anything to keep her virus in check. The only comfort she received was from prayer, she says, which must have been enough. Her son was born HIV-negative.
Rene Ryan wasn't quite so fortunate. She learned her husband had infected her only after their newborn son had caught a cold in an Austin day-care center. It was apparent that his elderly pediatrician had misdiagnosed the illness, but few people had seen pneumocystis carinii pneumonia in a 3-month-old baby in 1989. Tests taken in the ICU, however, confirmed the baby had full-blown AIDS.
The Ryans were just a couple of white kids who had grown up together in a small Hill Country town, fallen in love after he went off to college and married too soon after deciding they just had to be together. Before marriage and monogamy, they were both young and promiscuous, which must have increased their risk of exposure. Now none of that mattered, not after the doctors told them their baby had only six months to live. "We were just hoping we could take him home to die," Rene says.
They had a glimmer of hope when their son was accepted in a Houston drug study, which tested AZT on children. Every two weeks for two years they would travel to Houston until the virus finally overwhelmed his body. "We got to take him home for an early Christmas," she says. "He was such a strong and brave little boy--happy right until the end."
The death of their son strained their marriage as they cycled between anger, counseling and cocaine. None of these helped them stay faithful to their AZT regimens, although she was better about taking care of his medical needs than her own. "It didn't help when I had side effects like diarrhea. I was running to the bathroom at work every five minutes, and I was trying to keep it a secret from my boss." She developed a strain resistant to her meds and was forced to switch regimens more than once.
Drugs and bitterness finally took their toll, and the couple decided to separate. She moved to Houston to be close to her brother, who was also dying of AIDS. Her husband grew worse, his illness progressing faster than hers. A year later, she got the phone call: He was in a hospital bed, comatose and dying. "I was there when he passed away. I loved that man for a third of my life, but we ran out of time to work things out."
Shalonda Henderson also took AZT, until she could hardly walk from the neuropathy it caused. The medications she took to prevent her from getting pneumonia made her face "blow up like I had been beaten up." In 1996, her doctor wanted to start her on protease inhibitors. She decided to wait until she and her son returned from Dallas. They would be spending Christmas with her family.
In Dallas, she developed a migraine so painful that she started seeing double. Rushed to Parkland hospital, she was diagnosed with cryptococcal meningitis, a fungus that lodged on her spinal cord and produced pressure on her brain. She slipped into a coma, and the doctors encouraged her mother to "pull the plug." Her mother insisted on waiting, and after 32 hours, Henderson opened her eyes. She was blind, other than being able to discern light from dark. Her T-cell count had dropped to two; she had virtually no immune system left. Her hair had fallen out, and her skin looked as though she had been burned beyond recognition. "Still, I was glad to be alive," she says.
Her doctors put her on a three-drug cocktail, two nukes and a protease inhibitor. One of the nukes caused her to have more neuropathy--bad muscle spasms and numbness in her feet--but her viral load and T-cell count both headed in the right direction. She and her son moved into her mother's house until 1998 when AIDS Services of Dallas found them an apartment at one of its HIV housing projects for the poor. AIDS Arms helped her with clothing; AIDS Interfaith helped her with transportation; AIDS Resource Center helped her with food; and Bryan's House helped her with child care. "I had case managers up the butt," she says.
AIDS Interfaith also ran the Daire Center, a place where HIV-positive adults eat lunch and chat, and where Henderson met her future husband. "We just started talking and became friends," she says. "He was positive through drug use and multiple partners. We exchanged phone numbers and later got married."
At first, the sex between them was safe; neither of them wanting to risk re-infecting the other. "It's not real common, but it can happen," Dr. Sloan says. "There are cases of patients whose virus is under control, and all of a sudden, there is a huge viral change that corresponds to the virus the partner has. One predominate virus will usually win out, but you may have to treat both."
As their relationship progressed and Henderson's viral load didn't, they decided to have a child. They consulted a doctor who said that with the HAART therapies now available, there was less than a 1 percent chance their baby would be HIV-positive. "Thirteen weeks after the fetus' organs develop, the woman begins treatment with a cocktail," Sloan says. "And when the baby is born, he or she gets AZT."
On December 8, 2000, Henderson gave birth to a healthy baby girl. But her husband, who was using again, tempered her joy. "My blindness may have heightened my other senses, but it didn't take much intuition to figure out that he was doing drugs," she says. "Not when the dope man came around looking for his money." She would have none of that around her children and told her husband to pack up and leave.
Stressed over her marriage, she let her health slide and stopped taking her medications. "When there's a lot of stuff on your mind, sometimes you don't feel like swallowing 40 pills a day," she says. Her viral load shot up 10,000, and her T-cell count dropped to 130. She felt fatigued, bone-weary and developed resistances to two medicines. Getting adherent with a new cocktail took some persuading, but she managed it with the help of The Kitchen Table, an HIV women's support group affiliated with the AIDS Resource Center. She talked freely to women in the same situation, women who had contracted the illness from working the streets or IV drug use or a husband in denial. "But I'm the only blind woman," Henderson says. "I think that gives the others strength."
Rene Ryan became a founding member of the group in 1999 after she moved to Dallas. Through friends, she had met a "highly empathetic" HIV-negative man whom she would eventually marry. "Not many men would go into this with their eyes wide open," she says.
They understood it was more difficult for a woman through vaginal intercourse to transmit the virus to a man than the reverse. Nonetheless, she insisted he wear a condom, at least at first. It was his choice, however, to have unprotected sex, knowing that any virus he might contract could be a more virulent strain, replicating with her same drug resistances. Still they were cautious: He would get tested every six weeks, and they would have unprotected sex only if they knew her viral load was undetectable.
She didn't know if she could even get pregnant and felt conflicted when she finally did. She could never replace the child she lost, yet she wanted to be a mother again--desperately. She knew the risk of exposing her baby was negligible but grew concerned others might judge her: What business did an HIV-positive woman have getting pregnant when taxpayers were paying for her medications? Then again, she had lost a son, a husband, a brother, her own health to this epidemic. Wasn't she entitled to some happiness?
Ryan decided to continue her pregnancy and delivered a healthy baby girl. Four years later, she had a boy, who is also HIV-negative. "I never thought I would be a mother again, which alone brings me the greatest joy in the world."
Yet she can never forget the fragility of her existence, the worry that she could contract an opportunistic infection from a cold her child might catch, the angst that her latest cocktail might fail her or her immune system finally just might give out. "I feel like a frog jumping from one lily pad to another before it starts sinking," she says. "I stay as long as I can, but I'm not sure how many lily pads are left."