June #71 : Generation AIDS - by Tom Beer

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Table of Contents

Longtime Companion

Generation AIDS

It's A Small AIDS World After All

Marsha Burnett

Ruben Rodriguez

How They Shot AIDS: A Viral Video Roundup & Takedown

AIDS Movie Must-Haves

Words to Live By

Memento Mori

Quotes: 20/20 Hindsight

Birth of a Notion

About Face

Life After Birth

Serostim Sabotaged!

Herb Of The Month: Hawthorn

Warning: A Riff on Amps

Natural Woman

The Right Angle

Hotline Help Me!

Under My Skin

Editor's Letter

Mailbox

First Case Scenario

Songs In The Key Of Life



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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June 2001

Generation AIDS

by Tom Beer

Liz Murray, age 20, wasn't born with AIDS -- but with two positive parents, she certainly grew up with it. Tom Beer explores the story of Generation AIDS.


Liz Murray was just a baby, 9 months old, when The New York Times ran a small story about an outbreak of a rare cancer among gay men. It was July 5, 1981. Liz lived with her mother, Jean Murray, and her 3-year-old sister, Lisa, in an apartment on University Avenue in the Bronx. Chances are that Jean, like many people that day, took no notice of the article. It's unlikely that Liz's father, Peter Finnerty, even saw it; he was upstate serving a three-year prison sentence on drug charges. The "rare cancer" was, of course, Kaposi's sarcoma, one of the first manifestations of a disease that would profoundly change not only this family, but the world. Liz's mom tested positive when Liz was 10 and died when she was 16; by the time Liz was 18, her dad had tested positive, too.

Liz is now 20. Though she remains negative, she has grown up with AIDS. So has all of her generation, really. Some have been surrounded by the epidemic: Fordham, the Bronx neighborhood where Liz spent her childhood, has long been a crossroads of drug use and HIV; today, the New York City Department of Health reports that nearly one in nine people there have HIV. Others have experienced the epidemic through a teacher, a cousin or a friend of a friend. All of them have been exposed to AIDS as it has played out in the media since the early 1980s. Now these young people are coming of age, making choices about sex and drugs, forging their own adult compact with the virus.

Liz often recalls the day she was speaking at a public high school in New York, and a student raised his hand to ask a question: How would your life be different if your mother hadn't gotten sick and died of AIDS? Liz has been asked countless questions about AIDS over the years -- some ill-informed, others anxious or astute -- but this question has stayed with her. The answer is, AIDS changed everything.

You may have seen Liz on 20/20, in a December 1999 segment titled "Liz's Triumph." It told, with maximum bathos, the tale of a girl who was raised in poverty by drug addicts, watched her mother die, won a college scholarship and was accepted into Harvard. When I first meet Liz in person on a bright, cold afternoon last February, she is poised and resolute. We sit talking in the cluttered Sarah Lawrence College dorm room of her boyfriend, Ruben Porras, 19, and Liz speaks forthrightly about her life. But her Irish green eyes are guarded. The Cinderella story seized on by the media hasn't quite had a fairy-tale ending: She spent a difficult, depressing semester at Harvard last fall and is now taking a term off. It's a period of reflection.

"My parents met and fell in love in the '70s," Liz tells me, "when they had mutual friends who were in the drug scene very heavily. They were an intense couple." Liz remembers feeling loved as a child, taking family trips to the beach and Greenwich Village during the good times. But most of all, she remembers the drugs. Liz's parents shot coke openly at the kitchen table. Liz's older sister, Lisa, would get furious and withdraw; she'd lock herself in her bedroom, blast Debbie Gibson on her stereo and write poetry. But Liz would stay and watch, taking in the details of her parents' obsessive ritual. After a hit, her dad would sit in the corner, tense and mute, while her mom, nervously twitching, would perch next to Liz on the living room couch and unburden herself, often with memories of physical abuse by her own father.

Outside the self-contained world of that apartment, the Bronx had become a different place from when Jean grew up there. During the '70s, as services were cut, century-old houses burned to the ground and poverty worsened, white ethnic families moved out and blacks and Latinos moved in. By the '80s, the drug culture was in full blossom, and AIDS, too, had encroached, as overlapping networks of users shared needles. By the time she was 8, in 1988, Liz could see signs of the disease all around her, though she hadn't yet heard its name. "These neighborhood characters started disappearing, or they would look drastically thinner and more unhealthy. My mother told me later that she lost a lot of friends to AIDS."

Liz can't say for sure when her mother got infected, but she remembers quite distinctly the night when she was 10, and Jean came in to her bedroom after shooting up. This time her confession was different, gentler. "She started to reassure me," Liz says. "'I'll always be in your life, don't worry. I'll see you graduate from college. I'll know my grandkids.' I sat up and said, 'What's wrong?' And she said, 'Well -- I have AIDS.'" Liz quietly shakes her head. "I just knew that it meant death."

If Liz's family was a fragile ecosystem that held together despite its many dysfunctions, AIDS was about to throw it out of balance. There was the day Liz accidentally stepped on a needle in the apartment. For months she kept it a secret; finally she told an upstairs neighbor, and he took her for her first HIV test. It came back negative, as have the dozen or more tests she's taken in the years since. But Liz still remembers the uneasy weeks of waiting for the result that first time. Most children imagine that they are invulnerable. At 11, Liz already knew otherwise.

Things fell apart more swiftly then. Jean stopped doing coke, but she began to drink heavily. She moved in with a new boyfriend, taking Lisa with her. Peter, unable to make rent, went to live in a city shelter. And Liz, 13 now and chronically truant, was placed in a group home. When Liz finally got out, she found her mother in wretched decline: drunk every day, sometimes incoherent and wasting away. One day she told Liz she had only 78 CD4 cells left. Even for Liz, baffled by her mother's illness, that number had a terrible clarity. Jean was dying.

Liz had picked up some HIV pamphlets in the group home; now she read them cover to cover. She asked her mom lots of questions and pieced together the fragments. "Because AIDS was in my life, the curiosity was there," she says. "Otherwise, I would have stayed ignorant for who knows how long." The knowledge sometimes distanced Liz from her friends. She noticed little things, how kids would refuse soda if they'd seen her mother drink from the bottle. Afternoons, Jean would stumble home from the neighborhood bar, as drunk as she was sick, and Liz would have to usher her mother past her friends to put her to bed. The kids would sit there, stunned.

"A lot of times I didn't do anything because I didn't know what to do," says Liz's friend Chris Bautista. "I'd never seen anything like that before." Chris is a fine-featured 19-year-old of Dominican and Puerto Rican parentage who grew up on nearby Perry Avenue; she and Liz have had a rocky but passionate friendship since they met in junior high. Witnessing her best friend's mother slowly die of AIDS was awful, but she insulated herself from it. "As far as safe sex," says Chris wryly, "I was like, 'Safe sex: good idea. Too bad I'm not doing it.' I would look at Liz's mom and then go have sex with a couple more people. I don't think I put two and two together."

Liz had started to do just that. At 15, she had sex with a boy for the first time. It was his first time too, and they were safe, but she insisted on taking an HIV test afterward. "I knew I was messing with stuff that could kill me, just like drugs could," she says. Drugs held no appeal for her -- not after all she'd seen. But sex was different. "I guess I was more like a normal teenager that way," she muses. "The decision to have safe sex was something I had to come to on my own." Some partners helped her stay safe, others protested. "What -- do you think I have something?" one boy challenged Liz. "Well, anybody could," Liz replied.

Jean was in and out of hospitals throughout 1996, less and less able to communicate. But there was one exchange, toward the end, that Liz will never forget. "I was sitting in the kitchen, looking out the window, when my mother burst in," Liz says. "She had bad eyes, so she didn't see me in the corner. She reached for her pills on top of the fridge and was trying to open a jar, feverishly. It burst open, and the pills spilled all over. She plopped down on the chair, her head on the table, and just started crying. I reached for her hand, and then she picked her head up and saw me. She said, 'You're too young for this.' I had been looking at the summer sun out the window -- this nice setting, the room was calm -- and two seconds after she left, the room went back to that serene feeling, with all these pills spilled out across the table."

Not long after, Liz left home. Her mother was in the hospital most of the time, anyway, and she didn't like her mother's boyfriend. She and Chris would sleep at friends' houses, in subway stations, wherever they could. Eventually, they got a room at the Van Cortland, a cheap Bronx motel. Liz was there in December 1996 when Lisa called to tell her that their mother had died. "We buried her the day after Christmas," Liz says, "at a cemetery where if you're Catholic, they do it for free. They bury you in a pine box, and they stack you on top of other pine boxes, with the other people who couldn't afford funerals, and you go into an unmarked grave. So that's what we did."

In Ruben's dorm, Liz recounts this very softly and matter-of-factly. "Everything changed inside me around that time," she says. This is what really stopped Liz short when the high school student posed his question: How would your life be different if your mother hadn't gotten sick and died of AIDS? That Liz wouldn't feel sad all the time is the obvious answer. What's more paradoxical is that the next chapter of Liz's story -- where the homeless girl imagines that her life can be different -- well, that wouldn't have happened either.

Liz's next years have the quality of a dream: She dropped out of JFK, her neighborhood high school, and applied to one of New York's alternative schools -- Humanities Prep in Manhattan. There, she took Shakespeare and physics and ran for school government. She studied and got straight A's. One day she saw a flyer posted in her guidance counselor's office: HIV PEER EDUCATION GROUP. But nobody had joined yet. Talking it up in the school cafeteria, she pulled together 15 other students to get some HIV training; soon they were going from classroom to classroom, teaching. "Some kids didn't know how to take things that they heard and apply them to their own reality," Liz says. "It was hard to get kids to own up to what they're doing with themselves, and then to do something about it. Other kids, you could tell that AIDS had touched their lives."

With the help of her guidance counselor, Liz submitted an application for a New York Times college scholarship; unexpectedly, she won it. At the same time she applied to several colleges, including Harvard. When Harvard waitlisted her, she flew up to meet with the admissions officers; it was the first time she had ever worn a skirt, her first time on an airplane. She aced the interview, and prepared to start Harvard in the fall.

During this time, Liz still saw her father on special occasions, when they would get together with Lisa at a diner to celebrate: three of them, sitting in a booth for four. On Liz's 18th birthday, they agreed to meet in Greenwich Village, and while waiting for Lisa to show up, Liz and her dad sat on a stoop and talked. "He was stuttering and talking about AIDS research," Liz says. "My heart started pounding. He said, 'A lot of guys I know are on this new cocktail. Actually, I found out that I have the virus, too.' That's how he tells me." Liz consoled him -- then rushed out to get another HIV test, although she'd tested negative only three months before.

The bright, ambitious children who arrived with Liz at Harvard in fall 2000 had grown up with the epidemic as well, but AIDS meant something different amid the school's brick and ivy. In the Bronx, AIDS took away your parents and neighbors; it was a plague that left you powerless over your own life. Here at Harvard, the epidemic was something to wrestle with. Here there was a boundless sense of energy and optimism; you could have an impact.

One day in March I travel to Cambridge, Massachusetts, to meet with the leaders of Harvard's AIDS Education Outreach (AEO), a student group dedicated to educating the campus about HIV. Jorge Alex Alvarez, 21, is a brisk, wonkish biology student from Miami; his partner, Sharon Batista, 20, is a friendly bioanthropology major from Eaton Town, New Jersey. "The individuals here at Harvard seem to be very well educated about HIV," says Alvarez. "They usually know the transmission routes and what constitutes high-risk behavior. Although they don't necessarily think they have to worry about it, since they know it's treatable. In one popular organic chemistry course, you go over the structure of a protease inhibitor and find out exactly what it does."

Batista and I walk over to Straus House, where AEO is running a freshman workshop. The group's casual dress -- sweats and flip-flops -- contrasts with the room's Ivy League formality. Batista and her cofacilitators move fluently through the material, talking with great specificity about safe sex (though less about safe drug use or life with HIV), and the freshmen ask fairly advanced questions. Everyone seems at ease; the boys even say the words anal sex without tittering.

Liz found it hard to fit in at Harvard. There wasn't a single person that she knew of on campus -- student or professor -- who was HIV positive. When Liz told people about her mother and her father, they often got uncomfortable. "Oh, sorry for your loss," they'd say distantly. She joined another campus AIDS group, Visions, which educated about HIV in local high schools. But she felt separate from the others in the group, who seemed to have learned about AIDS from books. She only made it out to one school before semester's end. That was when she got on a bus and came back home to the Bronx -- to live in a small apartment with Chris, not far from the old neighborhood.

In the days when Liz was taking care of her sick mother, she sometimes attended a support group at JFK High. The group was called REAL -- Reality Enters All Lives, an acronym the students devised -- and it was started by the school psychologist, Paula Foster. Every week, the students in the group, who had each lost one or more family members to AIDS, came together to grieve. For nine years, Foster has listened to their stories. "What they tell me is this," says Foster. "Once you've been through a real tragedy, as they have with their parents, it's hard to be in the world with people who haven't. It isn't just the sadness that you've lost someone. It's proof that you're mortal. Most people live in denial." What Foster doesn't know for sure is whether this knowledge is enough to keep young people like Liz from taking the risks that lead to HIV infection. She hopes so.

The last time we meet, over lunch at a Midtown restaurant, Liz assures me that she always has safe sex, but it's difficult to tell if that's a simple truth or the answer that everyone expects from a tireless AIDS educator. Shortly after I first met Liz in February, I called to find out how things were going and couldn't find her anywhere. Finally, I reached her boyfriend, Ruben, and he told me that she'd left town for a few days to see some friends and think things over. Ruben had just told her that he was gay. I'm struck by the volatility of their romantic lives: Young people learn everything as they go. If the story of her childhood with AIDS is one that Liz has mastered in the telling, the story of her adult life is still a work in progress. Who she will become, who she'll have sex with and how she'll protect herself -- these are open questions, none of them easy. They're the questions that everyone in Liz's generation faces: Chris, Ruben, the kids in Paula Foster's support group, the freshmen at Harvard. All of them, with their different histories and hopes, have to make their way to adulthood in a world, after 20 years, still haunted by AIDS.




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