|Photos by Anne Fishbein|
The day Dorothy Travis got baptized, she woke up sick. Churning stomach, headache, tingling legs. She had grown accustomed to this wake-up call from the force that was slowly consuming her. But today the pain was more fierce than usual, as if trying to stop her from what she was about to do: tell the world she had AIDS.
With some effort she made her way from the bed to the closet, selected a burgundy sweat suit — a practical choice for full immersion in the baptismal waters — and turned to the mirror to make sure her hair was just right. She had always been proud of her looks, and for an instant she was startled by her reflection. Her skin, once smooth and creamy brown, was now dry and dull. Her curvy figure, which she'd maintained through the births of five children, had dissolved into loose flaps of skin. Her large brown eyes looked glazed, her lips cracked and chapped. This was not the image of the strong, energetic 33-year-old she wanted to be. How could she stand before the congregation looking like this?
It was a hot September morning, and Dorothy was covered in sweat by the time she got to Little Saint John, a tiny storefront church in South L.A. As her Aunt Bessie helped her out of the car and into her wheelchair, they could hear the congregation belting out one of Dorothy's favorite church songs, “Ain't Nobody Do Me Like Jesus.” Dorothy's insides began to flutter. The last time she had faced a crowd was at her graduation from Compton High. Back then she was an ROTC regiment leader, and she had held her head high. That was pure joy. This was altogether something else. Not only was she going to publicly acknowledge for the first time that she had AIDS, she was also finally soon to seek the medical care she'd been avoiding. Dorothy had agreed, at Bessie's coaxing, to move to a hospice — as long as she could get baptized first. Secretly, she hoped God would make her well.
As the song came to a close, the pastor called Dorothy forward. Bessie steered her niece to the front, and all faces turned their way. The room was so quiet that Dorothy was afraid to breathe. Then the pastor put his hands on her shoulders, leaned over and looked directly into her eyes. He spoke loudly, so that everyone could hear. He compared her to Lazarus, who had died, but with the help of Jesus come back to life. Dorothy, too, could be healed. “Yes, you have AIDS and you are sick,” he said. “Don't be afraid. You're God's child, and he's going to take care of you now.”
The pastor led Dorothy to the baptismal font, a tub the size of a small Jacuzzi. She was too weak to get in, so he dipped his hand into the water and shook it over her head. Then he made the sign of the cross, embraced her and invited the congregation forward. One by one, every man, woman and child filed up to the front, kissed and hugged her, and welcomed her into the fold.
For many African-Americans, seeing one of their own dying of AIDS is an all-too-familiar sight. Over the past decade, the epidemic has engaged in a sort of reverse white flight, migrating steadily from the aeries of middle-class Anglo gay men to the ghettos of the poor, especially blacks. Thanks in large part to a range of highly effective new drugs, the overall number of deaths from AIDS has dropped by two-thirds in the past seven years. Meanwhile the percentage of people dying of AIDS who are black has risen steadily.
Scientists tracking this shift start in L.A., in fact, where America's first cases of AIDS were positively identified two decades ago this month. Of those five original cases, all were gay men, as were most of the hundreds of thousands who died in subsequent years from what came to be known as the gay plague. But by 1993, blacks, who represent about 12 percent of the U.S. population, made up an estimated one-third of AIDS deaths. And in 1999, the most recent year for which statistics are available, half of all people who died of AIDS in America were black. That means that in 1999 more than 8,000 African-Americans died of AIDS, more than of emphysema, or of gunshot wounds.
Dorothy Travis had no idea of the extent of the damage AIDS had done — just that she felt utterly alone. But for these few moments at the front of the church, she had made her illness visible to all, and she was accepted unconditionally. As the congregation surrounded her, the fear that had enveloped her fell away, and she began to cry. “So many times, people see me looking sick and they turn away, pull they kids back,” she said later. “Having all these people, all these kids, kissing me, and nobody was afraid, that felt real good.” In that moment, she felt ready to get help for her AIDS. For once in a life full of hard luck and wrong turns, Dorothy knew she was doing the right thing. What she did not consider was that it was probably too late.
TWO MONTHS LATER, JUST A FEW DAYS BEFORE Thanksgiving, Dorothy got herself into a hospice. Carl Bean House, situated on the northern edge of South L.A., has a friendly staff and state-of-the-art care, but Dorothy was used to being surrounded by her children, and she was lonely. She hung her youngest child's drawings on the walls and put her plush-bear collection on prominent display. Bears sat at the foot of her narrow hospital bed, on the windowsill, on top of the television and on the counter alongside her makeup next to the sink. Her favorite was a grinning polar bear in a tasseled graduation hat, a gift from her 12-year-old daughter, Kiniesha*, the last time Dorothy got out of the hospital. “You took that first step to getting better,” Kiniesha told her. “You graduated to Carl Bean.”
That it took Dorothy so long to take that step — getting the help she needed to treat the virus — could be considered puzzling at best and downright crazy at worst. But it was just the most recent of a string of delays and denials that began the moment Dorothy learned she had AIDS.
Though the details of Dorothy's life are her own, her experience with AIDS tells the larger story about where the virus is now — deeply entrenched in the American underclass, particularly among African-Americans. The self-deception at the heart of Dorothy's attitude about AIDS is universal — anyone with a serious illness can relate. But AIDS is different, because it is transmitted through the intimacy of sex and shared needles, because there is no cure and because the medical regimen required to combat it is arguably the toughest ever encountered by human beings. As a result, AIDS hits hardest those sectors of society least equipped to defend themselves against it, a group that is disproportionately black and poor. What Dorothy did — and didn't do — once she knew she had HIV sheds light on a community whose affliction remains largely hidden, but where the epidemic is taking an increasingly heavy toll.
Shortly after her arrival at Carl Bean, Dorothy sat at a round meeting table down the hall from her room and considered her life. She was a wispy, quiet presence in shorts, gold-framed glasses, and a white T-shirt stretched awkwardly over her stomach, distended from AIDS drug therapy. Her voice raspy and dry, she seemed eager to reveal the difficult road that got her to this unbearable point. But on this day she made it clear that she didn't want the information publicized. “I don't want anything in the paper that's gonna say 'Dorothy Travis has AIDS,'” she said firmly. “It's been hard enough on me already.”
During dozens of conversations over the next five months, Dorothy shared the most intimate details of her life, the misdeeds done to her as well as the mistakes she herself had made all spilling out in an even, unaffected tone. Eventually she changed her mind about having her story told, saying she hoped the information might help someone else in her situation. “Maybe if I'd seen something like that, I'd felt less alone,” she said. “More brave to act right.” Today, though, she was just happy to have someone to help take the edge off her loneliness. “Up until I got AIDS I was doing okay,” she said. “Sometimes I still can't believe this is me.”
DOROTHY JEAN TRAVIS LEARNED EARLY ON TO distance herself from painful things. She and four brothers grew up in a cramped apartment on Chicago's South Side, getting by on their mother's schoolteacher salary. When Dorothy was 5, her oldest brother, whom she adored, died from an allergic reaction to penicillin at age 11. Another brother, who was often charged with looking after her while their mom was at work, seemed to have little concern for her well-being and made her the target of cruel games. Sometimes he would stand her in front of a playground swing and launch it into her head, knocking her to the ground. On one occasion the swing gashed her forehead, leaving a jagged scar that remained throughout her life. “I never did cry,” she said, shaking her head as if talking about someone else. “I just got up and let him do it again.”
School held little interest for Dorothy. She regularly skipped class to hang out with her friends, listen to music and look for boys — with her high cheekbones, wide-set eyes and open, unassuming air, she never lacked for male attention. “I liked the boys,” she said, “and the boys liked me.” It wasn't until she was 15 and the family moved to Compton that she discovered another passion: ROTC. “That was one time in my life I was good at something,” she said. “I thought maybe later to go into the military.” At her high school graduation, she had four stripes on her uniform and plans to join the Army. But by the fall she was pregnant, and her enlistment application was denied.
In May of 1987, just after Dorothy turned 19, Antoinette* was born. Though Dorothy's relationship with the child's father was rocky, she could not get enough of their daughter's sweet innocence. “I loved that baby smell. That baby smile,” she said. “It lifted me right up.” When Antoinette was 4 months old, Dorothy got pregnant again. By the time Kiniesha* was born, the father of the two girls was history. “We wasn't compatible,” Dorothy said. “He was always goin' around with other girls.”
When that relationship failed, Dorothy stopped expecting much from men, especially when it came to anything long-term. From here on out, the stable relationships in her life would be with her children. The men could come and go, but her children would always be there, and she meant always to be there for them, too.
Nonetheless, Dorothy had no intention of renouncing male companionship, either. In the summer of 1988, Dorothy went to southeast Arkansas to spend a few months with her grandmother. She got a job waitressing in a café, where one of the customers took a liking to her. “He came in there and started courtin' me out,” Dorothy recalled. “He used to ask them all the time who was I.” The two spent the summer together, and more than a decade later Dorothy still remembered that experience as nearly perfect. “He was my first true love,” she said. “Puppy love.” Both knew that at summer's end Dorothy would be heading home, and on their last day together they made a pledge. “We said we would not marry nobody but each other,” she said. “That was a true pact.”
Back in L.A., Dorothy heard a few months later that her true love was getting married. She packed up her things, piled herself and her baby girls onto a Greyhound bus and made the two-day trip back to Arkansas. “I went down there and reclaimed my love for him,” she said matter-of-factly. “We moved in as a family together, and he took care of us.” The two were married, and soon James* was born. But Dorothy was unhappy with the pace of life in a small Southern town. She persuaded her husband to move the family back to L.A., where they stuck it out for another year and had another child. It soon became clear that the marriage was suffering. “He moved out here to be with me, but he couldn't adjust,” she said. Before long he headed back to Arkansas, alone.
Dorothy found herself in a difficult situation: At 23 years old, she was a single mom with four children under age 4. Given her low expectations of men, she was not surprised. She believed her husband had given the relationship a fair shake, and she harbored no ill will. “We still married,” she said. “To this day.” But to the Dorothy Travis living out her days at a hospice, her pre-AIDS notions of love and loyalty seemed little more than distant, quaint memories. Especially in light of what came soon after.
SHIVERING UNDER THE COVERS, BLINDS DRAWN on a sunny afternoon, Dorothy mustered her strength to tell the story of how she got AIDS. She was nursing a bad cold and had slept most of the day. Hugging one of her teddy bears, she sniffled and remembered the experience that profoundly altered the course of her life.
In 1991 she met Anthony, a friend of one of her brothers. Anthony was the man who infected her with HIV, but lying in her bed at Carl Bean, she talked about him the same way she had discussed the men who had come before, in an even tone with little indication of the depth of her emotions.
Once Dorothy and Anthony hooked up, they were practically inseparable. He worked odd jobs and spent time with the children, and for a while Dorothy let herself think that a stable, two-parent home might actually be possible. But a few months after they got together, Anthony was arrested for drug possession and sent to prison. When he got out, in 1993, they picked up where they had left off. Anthony said very little about his life inside, and Dorothy didn't ask.
Then Anthony got sick. “We didn't know what it was,” Dorothy said. “Was it tuberculosis or what? At that time we wasn't educated about AIDS. He took a test, and I decided to go and take me one at the same time, and we both found out June the 3rd that we was positive for HIV. I'll never forget that day. I cried. Yeah, I cried a lot. I got angry about it.” And then Dorothy did what she had learned to do as a child, detaching herself from the reality of what was happening. “I just let it go,” she said. “I guess in my mind I knew it was true. But I really didn't believe it.” ä
Dorothy's disbelief that she could be infected stemmed — at least in part — from the misperception that AIDS in the U.S. is spread almost exclusively through gay sex and shared needles. Indeed, male gay sex remains far and away the number-one means of transmission in the U.S., and injection drug use accounts for a substantial share as well. But women now account for one in five AIDS cases in this country — the number of men diagnosed with AIDS peaked in 1992 and has been declining ever since, while the number of women diagnosed with AIDS continues to grow. And the main means of transmission to women is heterosexual sex. In L.A. County, the AIDS rate is more than four times higher among black women than among white and Latino women. All of this was news to Dorothy. In her limited world of family and friends, she had never heard of a black woman getting AIDS.
Anthony told Dorothy that he was not certain how he contracted the virus, but there were plenty of possibilities. She knew he had gone to prostitutes and had injected drugs. And, though Anthony considered himself heterosexual, Dorothy didn't rule out the possibility that while in prison he might have had sex with men. About 3 percent of all inmates incarcerated through the California Department of Corrections are HIV-infected, a rate that is seven times higher than the rate in the general population. And black men make up 8 percent of California's total male population but nearly one-third of its prison population, heightening the effect of prison-transmitted HIV in the African-American community. The high rate of black incarceration combined with the taboo of gay sex has created a potent, yet largely undocumented, incubator for the spread of HIV.
“In jail, sex between men is a ritual,” said Cleo Manago, founder and director of the Amassi Center, an AIDS-focused community health clinic in Inglewood with a largely black clientele. “To get away with it, it is presented as a manhood contest. It's another world, like going to Russia. When they go home, they don't dare address it, and in this regard it doesn't matter whether they were forced or one of the forcers.” Once they're out of prison and back with their wives or girlfriends, some men continue having sex with men, adhering to a code of silence so widespread it has its own name: the D.L., short for down low.
Dorothy had never heard of the D.L., and in any case she was less concerned with how Anthony contracted the virus than with how long he had been aware of his HIV status. She searched her memory for clues that he knew but didn't tell her. The only time she remembered him mentioning HIV was when he joked about the countless women he'd slept with. “He used to always say if it ever turned out he had it, he was takin' a lot of people with him,” she said. “That stayed in my mind a lot. He always said he didn't know. But sometimes I wonder. I really do.”
Even as Anthony got sicker, Dorothy showed no symptoms. And though both were fully aware of their HIV status, they did something even Dorothy herself had a hard time believing when she talked about it later. They tried — unsuccessfully — to have a child of their own. “I knew I was going to lose him, but I wanted to keep a part of him with me,” she said. “I know it was a risk, but I couldn't accept the loss.”
Anthony died in April of 1995. Dorothy had his name tattooed onto her left wrist, but she did little to stem the spread of HIV through her own body. She went to the doctor occasionally and took AZT every now and then. But taking the drug made her feel sick. Most of the time she just tried to forget. “I was drinking a lot,” she said. “Smoking weed with my friends.”
Lying in her bed at Carl Bean as the day's light began to fade, Dorothy remembered that time with remorse. In some twisted way, she knew, she was one of the lucky ones. She had discovered her HIV status early on, and had witnessed the slow and painful death of a loved one from AIDS. These experiences could have emboldened her to buck the cultural malaise and get the treatment she needed to keep the virus at bay. Instead, they fed her fear, and she pushed the knowledge of her sickness deep inside. “I just kept on saying, 'Well I ain't gettin' sick,'” she said. “Sometimes your partner have it and you don't have to have it.” She paused. “I was in denial a lot.”
CONVENTIONAL WISDOM HOLDS THAT MORE black people have AIDS because they don't know when they're at risk and they don't get tested. “African-Americans are poorer and have less access to health care,” said Phill Wilson, founding director of the L.A.-based African-American AIDS Policy and Training Institute. “There is less of a culture of health care, period.”
But as time goes on and AIDS continues to spread throughout the African-American community, it is clear that ignorance and limited access are only part of the picture. AIDS-education billboards dot the landscape of black L.A. And clinics that treat HIV abound. As far back as 1997, a Los Angeles Department of Health Services Survey found that African-Americans had the highest HIV-testing rate of any ethnic group — nearly half of all blacks surveyed had been tested, compared with less than a third of whites. “It's a myth that black people think AIDS doesn't affect their lives,” said Manago of the Amassi Center. “It's just not plausible when you have the likes of Magic Johnson, Eazy-E, Arthur Ashe, Max Robinson — big names that everybody knows — all with HIV or AIDS or dead.”
The cause of the unchecked spread of AIDS, according to advocates and health-care providers, is a complex of socioeconomic factors that can be summed up in a single word: stigma. According to Robert E. Fullilove, a professor of public health at Columbia University who has studied AIDS in the black community extensively, the epidemic cannot be brought under control until the stigma is overcome. “Some people,” he said, “would rather die than acknowledge they have AIDS.”
To understand this, it helps to look at the way AIDS was dealt with in the gay community. Initially, AIDS was a source of shame, and gay men went through the requisite stages of anger and denial, followed by acceptance. Only it wasn't just acceptance, it was an all-out embrace. “For gay men, living with AIDS became a statement,” Manago said. “I'm not just going to die as an oppressed faggot. I'm going to live with this. Boom. There was no stigma anymore.”
But when black folks started confronting the issue, the white gay blueprint did not work. Gays had a built-in health-care network for sexually transmitted diseases, and a culture of adhering to medical treatment for those STDs. In the black community, those things were less established. There was nothing that dealt with black notions of gay sexuality, or with the way black AIDS related to substance abuse and mental health. There was nothing that spoke to heterosexuals at risk for AIDS, or to the disenfranchised, poverty-stricken world of the black underclass. And there was nothing that addressed the deeply ingrained suspicion of a government-backed medical establishment that had inflicted the Tuskegee syphilis experiments on its black population. In essence, there was no recognition of the profound differences — both obvious and opaque — between blacks and gays. “The empowerment piece, the cultural-affirmation piece, the part that would help them resurrect their self-image and learn to love themselves and feel good about themselves, that did not come with the blueprint,” Manago said. “The only thing that came with it was a condom and the command 'Don't do it.'”
The lack of support that begins with HIV prevention persists once a black person has AIDS, said Wilson of the AIDS Institute, who is himself HIV-positive. “In order for someone to invest the time and energy it takes to get the treatment and adhere to the medicines, they have to believe their life is worth the effort,” he said. “As long as there is the stigma, that isn't going to happen.”
STIGMA WAS NOT A WORD DOROTHY USED, BUT she felt its effects from the moment she learned she had HIV. One Sunday, as she waved away the Jell-O and strained peaches her Auntie Bessie was trying to feed her, she recounted her loyalty to Anthony during his decline, how she stuck by him, caring for him and encouraging him to speak out about the virus. How she felt the sting of people's reactions to him, watched as his friends stopped coming around and his family shut him off. “When you have AIDS, it's like you dead,” she observed. “Nobody wants to know you.”
Dorothy's HIV diagnosis heightened long-standing tensions in her own family. Her mother, who had high hopes for her only daughter, stopped speaking to her. Other relatives followed suit. “They was ignorant,” she remembered. “They was afraid to touch me.” Anthony's family was angry with her as well. “They thought I contracted it to him,” she said. “They used to want to fight me and everything. But Anthony stood up for me. He wouldn't let them take care of him. He only wanted me.”
Fortunately for Dorothy, Bessie Golden-Jones was an exception. She was working as a receptionist at a clinic in South-Central L.A. at the time, and she had witnessed the reactions of patients, many of whom were African-American, when they learned they were HIV-positive. “There was a lot of anger and denial,” Bessie said. “A lot of shouting and crying.”
Dorothy and her Aunt Bessie had never been close, but Bessie was concerned enough about her niece that she enrolled in a nine-week home-health-aide program at Compton Adult School. She took a job working at an AIDS hospice in Long Beach, where she confronted her fear of the virus. “I was scared if somebody touch me, I could catch it. Touch a cup or a spoon, eat out the same bag of potato chips,” she said. “That is the misconception people have, that I had. I learned from the people there. They told me you can't catch it any of those ways, and you can't catch it from hugging me.” Bessie learned that the AIDS virus can be contracted most easily through the blood, and people with lesions caused by STDs are many times more likely to contract the virus during unprotected sex than those who don't have these sores. She also found out that such STDs are far more prevalent among African-Americans than any other racial group. In 1998, according to L.A. County statistics, 1 in 10 African-Americans living in South Los Angeles had chlamydia, a finding characterized in an otherwise dry report as “staggering.” The countywide rate was a fraction of a percent. African-Americans also had the highest rates of gonorrhea and syphilis.
Since Dorothy contracted the virus, AIDS has taken center stage in Bessie's life. “Everyone I know, AIDS has touched their lives in some way,” she said. “But nobody wants to talk about it. Nobody wants to hear about it. After a while, you just don't want any more bad news. You just tune it out.”
DESPITE ANTHONY'S DEATH, DOROTHY CONTINued to act like she was immune. A few months after his burial, Dorothy had a fling with a man who was HIV-negative. She told him of her status, but he seemed unconcerned. Even years later, Dorothy never truly acknowledged the recklessness of this affair, that she was risking passing along the virus that had killed her lover and that was threatening to kill her. When asked about it, point-blank, she shrugged. “We used condoms,” she said. “That was enough for him.”
Then the unthinkable happened: Dorothy got pregnant. “It was a real surprise,” she said. “It was scary, because I said, 'How am I gonna take care of a baby if he's sick?' I was real worried.” Despite her concern, she was also elated. “I said, 'This is God giving me back Anthony,'” she said. “I looked at it like that ever since.”
Dorothy's pregnancy temporarily altered her attitude about the virus. Whatever her ambivalence about treatment for herself, she was taking no chances when it came to the fetus. For the first time, she sought regular care. She got into an HIV prenatal program at USC and followed the doctor's orders to the letter. Twice a week, USC sent a cab to her home and took her to the clinic for testing. “I took all my medication,” she said. “I did everything they said.” Her pregnancy also broke the silence between Dorothy and her mother. “My mom opened her mind to us when she found out I was pregnant,” Dorothy said. “She started taking classes at school, learning about HIV.”
In May of 1996, Nathaniel* was born, free of the virus. He has tested negative annually ever since. The day she delivered, Dorothy had her tubes tied. “Since Nathaniel made it,” she said, “I think it means I was meant to have him.” ä
But then Dorothy was diagnosed with full-blown AIDS. This made no sense to her, because she felt better than she had in a long time. Despite the diagnosis she stopped taking her medicine and did not go to the doctor. She felt so good, in fact, that she thought she might somehow have been cured. “I was doing real well,” she said. “Seemed like maybe the AIDS was gone.”
FOR NEARLY TWO YEARS, DOROTHY got no treatment and did not get sick. Then, in mid-1998, she caught a cold. Before long she could hardly stand. She wound up spending a month in the hospital. “I found out my T cells was gone,” she said. “They told me I had pneumonia.”
In the hospital, Dorothy was on a strict regimen of HIV medication, but when she was released, she stopped taking her pills after a few days. “There was a lot of side effects,” she said. “They made my stomach hurt, caused me headaches.” Dorothy paused and looked down. “They made me more angrier that I had the disease.”
She also had other things on her mind. While she was in the hospital she had fallen behind on the rent, and the day she got out, she was evicted. She and her five children sought shelter with her few remaining friends, in cheap motels and then, eventually, in abandoned buildings. Dorothy was not on good terms with her family at the time, and she was too proud to ask for help. “I had a big issue with my mom,” she said. “So we just left each other alone.”
Dorothy and her kids were homeless for nearly two years. When the family finally did get into a subsidized apartment in the city of Hawthorne, just east of Compton, she was so sick she could not get out of bed for weeks. The burden of maintaining the household fell to Antoinette, who had just turned 13. Soon Dorothy was back in intensive care. “My immune system was shot out,” she said. “Then pneumonia again.”
When Dorothy returned home, her life unraveled. “I was tired of taking medication. I felt unhopeful. I was swollen up all over my body. The kids were unhappy.” Antoinette started calling Dorothy's mother, asking her to come and get them, much to Dorothy's dismay. “I'd tell my mom, 'Let Toni stay. Let me talk to her,'” Dorothy recalled. “She was like, 'Dorothy, Toni don't need to be around you like this while you sick. None of the kids do.'”
Dorothy was so frustrated, she all but decided to give up. “I went to the doctor for the last time and I told him, 'I'm not taking any more HIV medications,'” she said. “And his words to me was, 'Well, we gon' lose hope in you. You just go home and die.'” He then told her that if she wanted to get better, a hospice was her only hope.
ON NOVEMBER 21, 2000, DOROTHY checked into Carl Bean House. It was Bessie who picked Carl Bean, a 25-bed center named for an AIDS activist, specifically because of its outreach to African-Americans. Since the advent of highly successful AIDS drug therapies four years earlier, the center's traditional clientele — white, gay men on their deathbeds — had dwindled. Carl Bean had broadened the types of care it provided and was filling the beds with people who reflected the community — namely blacks and Latinos. That change was largely enacted under the vision of Olen Henry, an openly gay African-American man with a teddy bearlike affability who was at that time director of the hospice. “Our goal is to get people in here and help them confront their illness in a supportive environment,” he said. “We want them to feel we are here for them, that we are nonjudgmental, that we love them.”
Under Henry, the hospice began offering a round-the-clock program to help residents learn to take their medicine and another to prepare those getting out of prison or the hospital to re-enter their lives. It was this readjustment program that Bessie thought would work for her niece. “This is a good place for Dorothy to be right now,” Bessie said. “It puts my mind at ease.”
There were many things about Carl Bean that Dorothy liked. Having someone help her take her medication was very important to her, and she was grateful for the contact with other people with the virus. “Seeing other people shed tears the way I do,” she said, “it releases a lot of my anger.” She started spending time out in the lounge area, chatting with the janitors and medical staff as they made their rounds.
One afternoon when Dorothy was feeling pretty good, she saw through her open door that another resident, Ernesto Zapata, was being wheeled out to the lounge. As usual, he was staring off into the middle distance, not paying attention to much of anything. Dorothy got herself out of bed, put on her purple scuffs and smoothed down her hair, which was tufted and patchy like that of a well-loved doll. Tugging her IV stand along beside her, she made her way out to where he was. She stood in front of him and smiled.
Though Ernesto spoke only Spanish and Dorothy did not, she learned from the nurses that he was 35 years old and originally from Honduras. His wife had died of AIDS a few years before, and the little boy Dorothy had seen running into his room was their child. The nurses also told Dorothy that an infection related to Ernesto's AIDS had spread to his brain, and when he did speak, he was usually incoherent. On the occasion of Ernesto's son's eighth birthday, the boy ran to his father's bedside to show him a stuffed animal he had received as a gift. Ernesto stared at him blankly. He did not recognize his son.
Despite his condition, Ernesto liked to sit in the lounge as much as Dorothy did, and she decided to befriend him. Whenever she saw the nurses wheeling him out, Dorothy would go and talk, telling Ernesto about her kids, what she had seen on television, or whatever came into her head. “Sometimes it don't really matter if you can understand what somebody's sayin',” she explained. “Just to know they interested is enough.” And Ernesto did seem to respond. When she was not there, he looked around expectantly, then smiled when she appeared.
On this day, just as Dorothy had settled in for a chat, a nurse came over wielding a needle, preparing to give Ernesto a shot. He got these shots several times a day, and usually sat impassively as the needle slid into his flesh. This time, though, he put on an exaggerated expression of horror — bugging his eyes out and leaning away. He then looked at Dorothy, rolled his eyes and smiled. She couldn't help but respond, erupting in a round, rusty sound that made her shake all over. “Not too many things to laugh about these days,” she said later. “But Ernesto always makes me laugh.”
FROM THE DAY SHE ARRIVED AT Carl Bean, Dorothy tried to maintain ties to life outside, especially when it came to her family. She refused to give up her apartment, because getting out of the hospice and back with the children was her number-one goal. In the meantime, she fretted over the children's struggles to cope with her illness. James, who was 11, was falling behind in school. After Dorothy had been at Carl Bean for a couple of months, he had packed up his stuff and “run away” from Grandma's house, arriving at a cousin's home just as Grandma showed up there for a planned visit. Though Dorothy knew the underlying problems were real, she could not help but be amused. “He thought he was getting away, and boy, was he surprised,” she said, shaking her head. “Now when I see him, I tell him I'm getting better. I tell him I'm getting well.”
Antoinette, who would soon turn 14 and resented any sort of parental control, had become withdrawn and would not show or receive any affection. During her last visit she had spoken sharply to her mother, and Dorothy slapped her in the face. Enraged, Antoinette hit back. “What is wrong with you?” Dorothy asked the girl, and Antoinette began to cry. “I didn't mean for this to happen to you,” she told her mother, confessing that, in the past, when she was mad at her she had wished her harm. She now believed her thoughts had made her mother's sickness worse. “It's my fault,” she said. “I'm sorry.”
Dorothy was shocked that her daughter felt responsible for her illness. “I had no idea she was carrying this around inside her,” she said. “I was so hurt that she didn't want to be near me, but then I understood why.” Dorothy reassured her daughter. “It's something inside me,” she told Antoinette. “It's nothing about you. It's not because of you in any way.”
Caring for five children had never been easy, even in the best of times. Thinking back on it, Dorothy could see now that when she was on her own, struggling with her sickness, it had been too much to keep up with the kids and life's day-to-day demands. “When I felt good, I just wanted to take a break, be with my friends, ä partying all the time. I didn't pay too much attention to the kids. Then, when I was sick, I was with the kids, but they didn't want to be around me 'cause all I did was lay around.”
Since she had been at Carl Bean, Dorothy felt better able to focus on her children, and to be a better mom. The irony of the situation was not lost on her. “When I had the chance, I didn't do right,” she said. “Now I see they need me, and I don't have the same chance anymore.” At the hospice, Dorothy missed them desperately and called them nearly every day. “When I talk to 'em, most of 'em cryin' 'cause they miss me,” she said. “It bothers me a lot.”
On a warm late-winter day, Bessie came by with 4-and-a-half-year-old Nathaniel, a gentle boy whose most striking feature is his eyes — elongated like his mother's and framed by thick lashes and oversize, unruly brows. These visits, when the rest of the kids were in school, had become their special time together. The boy ran straight for Dorothy. “Hi, Mama!” he shouted, smiling as he climbed into the bed. Dorothy was tired, but at the sight of her son she felt her loneliness dissolve. As he snuggled into her arms, she started nodding off. “He's at the age where he understands I can't go home with him,” she said drowsily, “and he still loves me.”
ONE RAINY AFTERNOON ABOUT A month later, Dorothy curled up under the covers in her bed, exhausted and depressed after an hourslong struggle with a relentless case of the hiccups. She felt especially dark because she had just been forced to let go of her apartment — if by some miracle she ever did get well, she now had no home for herself and her children.
“Sometimes I just wish my heart would stop beating,” she said and started to sob. “I get tired of taking all the medication. I'm tired of being here. That's the part I'm trying to understand. Sometimes I wonder, what does God want from me? Is this the way God wants it to be?” She paused, wiped the tears from her face and was silent for a long time. “I'm tired of limbo,” she said quietly. “I told them either make me better or let me die.”
The hospice staff tried to be encouraging. Olen Henry was especially concerned. It was he who had launched much of the outreach designed to bring black people with AIDS to Carl Bean. “There are people who doctors say are going to die who have turned around on antiretroviral therapy and are living very productive lives,” he said. “In the white gay population, it's all about how to help people go back to work. I had no intention of giving up on Dorothy, and I didn't want her to give up on herself.”
But by the time Dorothy got to Carl Bean, she had already burned through many of the drug therapies, which she had taken sporadically over the years. Now, with her immune system virtually nonexistent, she was on the most aggressive course of treatment available. Her medical chart listed 27 different kinds of medication, some she was taking as often as three times a day. “We're doing all the fighting externally,” Henry conceded. “Dorothy has very little fight left in her.”
EARLY ONE SATURDAY MORNING IN February, Dorothy prepared for her morning dose. Dressed in her purple scuffs, shorts, and a T-shirt that read “Jesus Is My Lifesaver,” she dragged her saline IV out to the lounge area. She had been feeling weak, and she had to stop and rest several times until a nurse came over to help her to the sofa.
Taking a seat in her favorite spot under a large skylight, Dorothy watched as the nurse brought out a tray containing 13 pills — the first of three rounds in her morning regimen. Dorothy regarded the colored pellets warily, then went to work.
She picked up four long blue capsules, Cytovene, for a herpes virus known as CMV. Left untreated, it can cause blindness. Dorothy was taking a total of 12 of these pills each day. “These are for my eyes,” she said, placing them on her left palm. She added a flat green disk, an iron pill called Feosol she took for anemia, then two shiny pebble-size balls, one white, ä one brown, called Marinol, the chemical component of marijuana, intended to help stimulate her appetite. “They help my digestion,” she said.
A pink rhombus known as Diflucan, used to treat meningitis and thrush, went into the pill hand. “This one helps the rash in my mouth,” she said. A black-and-pink capsule that looked like a hybrid Good & Plenty followed — Prevacid, to reduce stomach acid. Dorothy was in a constant battle with heartburn and hiccups, and this pill brought relief. It, too, went into her left hand.
She sighed and eyed the remaining pills, “the bad ones,” as she put it. There was a tiny white pill, called Lasix, to help relieve fluid retention and balance her electrolytes. Dorothy called it a pee pill and despised it, because when she took it she had to run to the toilet constantly. There was Paxil, a pink oval pill for depression that Dorothy called a crazy pill and that made her irritable. And finally there were two giant beige pills, each the size of a pen cap. These were Fortovase, a protease inhibitor. Dorothy picked them out of the cup. She was supposed to take two of them every 12 hours, but had stopped several weeks ago. “They supposed to keep my viral load down,” she said. “But they give me knots on the back of my head, so I don't take 'em.”
She took the Fortovase, along with the pee pill and the crazy pill, and dropped them all into an empty can of strawberry-flavored Ensure. She didn't hide this action. Nor, however, did she mention it to the nurse, who had gone to fetch the second batch of medication. Dorothy tossed the remaining nine pills into her mouth, took a swig of water and downed them all in one gulp. She then leaned against the sofa and began to hiccup in long gasps that yanked her head back and caused her chest to heave.
One of the hardest things about living with HIV and AIDS, even for those receiving the highest-quality care, is taking the medication. Patients must down more pills more often with more accuracy and for a greater duration (the rest of their lives) than has ever been experienced in human history. If doses are missed, the virus can then build resistance to the medication, narrowing a patient's treatment options and bringing death that much closer.
And there are the side effects, many of which Dorothy suffered. Her body fat gravitated to her belly, leaving her with twiglike arms and legs. She lost all her hair, suffered insomnia, nervousness, diarrhea and incessant hiccups. Though she usually took most of her medication, she developed a survivalist relationship with the drugs, rejecting what she believed to be most damaging, and from time to time going on strike and taking no pills at all. “I'm just trying to clear out my stomach,” she would say. “Sometimes it works, sometimes it don't.”
The nurse returned with round two, a cupful of nine pills — super antibiotics and vitamins — which Dorothy said were all for her MAC, or mycobacterium avium complex, a bacterial infection related to tuberculosis that attacks the intestines and is found mostly in people in advanced stages of AIDS. She took all but one, Magonate, a pale-orange oval that is a form of magnesium which she said “puts too much air in my stomach.” Then came the third and final tray of medication — seven cups of liquid — including the reverse transcriptase Viramune, the nucleoside Epivir, a protease inhibitor called Kaletra, as well as Ziagen, similar to AZT. There was also Zantac, which decreases stomach acid, and Megace, an appetite stimulant. Dorothy drank everything but the Kaletra, which she dumped down the sink. “That one really makes me sick,” she said. “I don't take it anymore.”
AS THE WEEKS PASSED, DOROTHY'S health continued to decline. She was barely walking at all and spending more time in bed. The struggle was one of simple survival now, and she spent a great deal of energy just trying to stay awake. Most of the time she lay in the dark, shades drawn, staring at the flickering TV. “I'm missing so much,” she said on one such day as she lay motionless on her side. “Life is just passing me by.”
One morning in late March, she woke up feeling better than she had in a long time. She called Auntie Bessie to see if she would bring Nathaniel by after work. Bessie agreed, and Dorothy's spirits soared. She passed the time until they arrived in the lounge area, joking with Ernesto and the nurses. “I feel so good it scares me,” she said cheerfully, turning her face to get the full benefit of the sun pouring in through the skylight. “Some people say that right before you die you get that glow. I think I got the glow, but I'm not ready to go.”
When Bessie and Nathaniel arrived, they decided they would all go out shopping. Dorothy was getting her things together, when she started to cough. The coughs grew deeper and longer, and Dorothy gagged, her body spasming so she had to lie down. Bessie called the nurse. Dorothy heaved, spitting up phlegm and then blood. The blood kept coming until it covered the bed and splattered the floor. Then she passed out. The nurse was having a hard time finding a pulse. She called an ambulance and asked Bessie and Nathaniel to leave the room.
Out in the hallway, Nathaniel was quiet. He looked up at a nurse who was waiting with them. “Is my mama dying?” he asked. The nurse considered him for a moment. “Honey, we don't know,” she said. “Can I see her?” he asked. The nurse nodded and opened the door. Nathaniel stood very straight and walked to the bed. Standing beside his mother's immobile form, his head level with hers, he kissed her cheek. “Go to rest, Mama,” he said. Then he turned and walked out.
DOROTHY DID NOT DIE THAT DAY. She had burst a blood vessel and for two weeks was moved to Cedars-Sinai Medical Center and placed in isolation until the doctors could be certain she had no contagious infections. By the time Dorothy returned to Carl Bean, she was too weak to walk and had lost her desire to eat. Her weight had dropped to 80 pounds, and all nourishment came through a feeding tube inserted in her stomach. She had lost control of her bowels, and felt intense pain in her legs and in her stomach. The truth of her condition was undeniably clear: She was not getting better. When the doctor told her she had the choice to stop all medication, Dorothy agreed. But while she was glad to escape the tyranny of the drugs, she could not help but feel abandoned. “The doctors giving up on me,” she said. “They say there's nothing else they can do.”
The Thursday before Easter, in a morphine and sleeping-pill haze, Dorothy lay in bed thinking about her future. Suddenly, everything was clear. She had already died, she decided, and this was the beginning of a new life. “I believe I am not the same Dorothy I was before,” she said, coughing. “That I've come back into another life, been reincarnated. Except instead of coming back as a baby, I've come back full-grown. I just have to be taken care of like a baby.”
Later that afternoon, Dorothy panicked and decided she wanted to leave Carl Bean. Her request for a discharge was denied. “They told me I'm dying,” Dorothy said angrily. “I can't believe they would say that to me. How do you think that makes me feel?” The next day, she asked to be taken outside. The nurses got her into her chair and wheeled her out. Dorothy sat silently in the parking lot for a long time, gazing out over the trees into the dense blue-gray beyond. Looking up, she was sure she caught a glimpse of her brother, who had died when they were small, smiling and beckoning her to join him. She stared at the sky for a long while. “Okay,” she said finally. The nurses put her back in bed and called Bessie.
All day Saturday and into the night, Bessie sat at Dorothy's bedside, praying and singing over her niece. “Give her to Jesus, Lord,” Bessie chanted, “give her to Jesus.” Most of the time Dorothy slept, her breathing ragged, her body slumped under the sheets. In the early Sunday hours, as Bessie dozed in a chair near the bed, Dorothy woke with a start. “Help me, Bessie!” she hollered. “Help me!” Bessie took her hand. “It's okay,” Bessie said. “It's okay to let go.” Dorothy nodded off again, and Bessie resumed her prayers. Then, just as the Easter-morning light began filtering into the room, Dorothy opened her heavy-lidded eyes and looked at her aunt. “I gotta leave,” she whispered, closing her eyes and coughing. “I gotta go.” Bessie called for the nurse, and leaned over to help her niece. She felt the stillness and knew Dorothy was gone.
“WE CAME HERE TO REJOICE OF A home-going,” the pastor declared. “Amen,” came the reply. “We are here to celebrate, because Sister Dorothy has gone to a better place.”
Dorothy's memorial fell on one of those rare L.A. days when fat white clouds hang low in a brilliant blue sky. The congregation gathered at Bessie's church — the Universal Mission Church of God and Christ in South L.A. — and shouted out song after song. The children crowded around a makeshift shrine of flowers and photos at the front of the church. There was Dorothy as a girl in a short pleated skirt, Dorothy peering out beneath a white hat, Dorothy smiling wanly from her hospital bed. Nathaniel took in the dozens of people gathered and grinned. “Everybody really loves my mama,” he said. Dorothy's mother made her way up the aisle. Face twisted in sorrow, she leaned on her grandchildren for support. Bessie followed close behind. Antoinette stood with the choir as if to sing, then changed her mind and sat down.
The pastor read the 23rd Psalm and talked of making time for family and God. He called Dorothy “one of God's great soldiers” and spoke of the heavy burden that now fell to Bessie and Dorothy's mother to raise the children. A few friends got up and offered their support. “I'll be there for you,” one friend said to Bessie. “You just say the word.” “You keep holding on,” a cousin said to the children. “In a new season, you'll meet your mama on the other side.” “Dorothy's not suffering,” Bessie said. “That's the good thing about it. And she couldn't of went on a better day. She was suffering, and now that's over.”
None of those who stood before the group explained this early death, or named the reason that these five young children were now without a mother. The word AIDS was never spoken.
*The names of the children have been changed at Dorothy's request.