LIVING WITH AIDS: SIX DANCERS SHARE THEIR STORIES.

No longer a universal death sentence, AIDS remains a scourge to be conquered

I was riding in an elevator in a Manhattan hospital, and the elevator doors happened to open onto a ward in which a distraught young man was talking into the phone at the nurses' station. I recognized him as a fellow choreographer--Arnie Zane. I knew Arnie had AIDS, and I stepped out to say hello. He had just learned that his chemotherapy wasn't working and the doctors were telling him there wasn't much hope. He was crying, and I hugged him. That was all I could do. As we walked outside, he lamented, "I know I complain a lot, but I love this life and I don't want to die." A few months later, Arnie was dead.

That was in 1987. If this scene had happened today, there would be more hope.

In the '80s and '90s, the dance community was decimated by AIDS. We lost some of our most treasured elders: Alvin Ailey, Robert Joffrey, Rudolf Nureyev, Michael (A Chorus Line) Bennett; some of our most promising youths: Edward Stierle of the Joffrey and Peter Fonseca of American Ballet Theatre, and mid-career artists like Arnie Zane (whose memory is preserved in the name of the Bill T. Jones/Arnie Zane Dance Company), Louis Falco, Robert Blankshine, Christopher Gillis, John Berndt and Ulysses Dove. During that period, it seems, we were attending as many memorial services as dance performances. We learned the meaning of community--the gathering together when the loss of someone you love leaves a big hole.

But thanks to improved medication, testing positive for HIV is no longer a death sentence. More dancers are continuing to live and dance with the virus. Others are still having a hard time. The fatality rate is slowing, but we cannot forget the devastation the disease still brings. I spoke with six dancers and former dancers who are handling the disease in different ways.

Dancer/choreographer Neil Greenberg, who teaches at the State University of New York at Purchase, tested positive in 1986. He's been basically asymptomatic, so he is living his life as usual, only cutting back on alcohol. Greenberg says 1993 was a hard year for him: His brother died of AIDS, two-thirds of the people in his HIV support group died, and he learned that the virus's presence in his blood had increased. Out of these tragedies emerged his Not-About-AIDS-Dance (1994) a powerful work that created a buzz in downtown New York. But in 1997 he landed in the hospital. "I had high fevers the whole week I was performing that fall" he says. "About a year later the doctors realized it was the medication that was doing that to me."

Now on new medication, he is thriving again. All along, he says, he has maintained a positive approach. "I tried to deny what all of the papers said, which was a ten-year maximum life expectancy," Greenberg says. "I refused to believe that and, as it turned out, I was right, for myself." However, he still struggles with the disease emotionally: "The whole AIDS-as-punishment thing is hard to get rid of in the deepest layers, and I probably haven't." In order to dispel some of the stigma that he grew up with, he makes a point of telling his freshman students at SUNY Purchase that he has the virus. After all, he reasons, it's part of their education.

Another dancer I spoke with dances every night in a high-powered Broadway musical. He has asked that his name be withheld, so I'll call him Jack. Jack got the bad news in 1996, the year that new medications came into being and many AIDS patients found "cocktails" of a variety of medications to be effective. Jack says, "My doctor told me right away, `This isn't the end of your life. Don't drive your car off a cliff. There are medications that are helping people, and you should be able to live a normal life. It's a controlled disease like diabetes. You just have to take your pills every day.'" At first Jack balked at telling his fellow dancers. But, he said, "I've never had a bad reaction from people I've been working with, though it's scary at first. You're afraid that people will look at you differently. But I don't mind being out a little bit at work, because people have questions and they know they can come to me. I enjoy giving back whatever I can to people around me." He's been generally very healthy, but his doctors haven't always known what to prescribe: "One time, for a whole month, I couldn't leave the couch: vomiting, diarrhea, severe stomach cramps. It was very scary."

But the knowledge of his HIV status motivated him. "It made me pull my life together and get my career going. I was happy doing revues and competitions, but I decided I wanted to make Broadway. Within three months, I made Broadway."

He feels comfortable in the dance world. "Being gay in the dance world is more accepted and you can be who you are. Because of that, people who are [HIV] positive can come out and share that also. When you get into TV or film, being gay is not OK. They may hire you to be a gay character, but they want you to be straight. If they were to find out you're HIV [positive], they would probably not hire you."

Of course, not only gay men get the disease. Stephanie Dabney, former star and unforgettable Firebird with Dance Theatre of Harlem in the early 1980s, was diagnosed ten years ago. Her first thoughts were, "There goes my career. If I get too sick to dance, what am I going to do? How am I going to tell my brother and sister?" She spent all of 1996 in the hospital with recurring pneumonia, and the following year in nursing homes. "My fourth pneumonia was PCP [pneumocystis carinii pneumonia, a life-threatening infection for people with weakened immune systems], and my lung collapsed. I had a chest tube pump in me for eight weeks. I remember the doctor coming into my room, surprised, saying `Hi, I didn't think you would be here.' He thought I wasn't going to make it through the night! That freaked me out." She is now participating in an experimental program, a nine-month trial with an Italian physician. "Maybe I'll help him find the cure," she says. Friends encourage her to resume dancing. "I ran into [actress] Cicely Tyson, and she thinks I should dance again," she says. "But Arthur [Mitchell, DTH's artistic director] has young, healthy and eager dancers now, and there's nowhere else I would want to dance besides DTH. I can't imagine trying to get in shape. I'd rather be remembered as the Firebird when I was young and healthy."

Sometimes, non-dancers would turn against her when they found out she had AIDS. "There was a woman in Atlanta whose position was to wine and dine the Somebodies," Dabney says. "I was the black ballerina who did Firebird, so I was in her in-crowd. But when she found out I had it, she wouldn't even return my calls."

Dabney, who has taught at Spelman College in Atlanta, thinks about the future. "I thought I'd want to teach again, but I'm walking with canes now. Tanaquil LeClerq [the extraordinary young Balanchine ballerina who was struck down with polio in the '50s] was my favorite teacher. She used her hands and arms as legs and feet."

Another former dancer, Joseph Carman, is now a freelance writer. [See his Young Dancer story.] Carman, who has danced with American Ballet Theatre and the Joffrey, almost died four years ago before the new medications became available. He had been diagnosed in 1987 while dancing with the Metropolitan Opera Ballet. "I kept it secret in the beginning because there was such a stigma. That was the time when The Post was running headlines like `AIDS Killer.' There weren't many support groups around. The year before I left the company, I told the ballet mistress, Diana Levy. The Americans with Disabilities Act had just been approved, which protects anyone in the work force who has a disability. It allows people with HIV to shorten work hours or to do a less demanding job. She was understanding and would ask me during rehearsal, `Are you OK?'" The main thing for Carman was getting enough rest. Working on a new production, he'd sometimes be in the theater for twelve hours: "When things were bad, I'd break out in shingles."

In 1996, he was diagnosed with Kaposi's sarcoma (KS), a cancerous growth associated with AIDS. "It progressed slowly and then all of a sudden my immune system went like a house of cards. I'd wake up with two new lesions every day. It was terrifying. They discovered I had KS in my lungs. That usually means a year to live if you're lucky. The doctor put me in the hospital and administered heavy-duty chemotherapy. I call it `slash-and-burn' chemo because it wrecks everything. For days afterward I would feel like crawling out of my skin. But it did get rid of the tumors."

An AIDS conference in Geneva had just demonstrated that protease inhibitors and the new "cocktails" were helping people. It was good timing, and Carman started a regime of the new medications. "My immune system slowly started to rebuild itself, and my T cells [white blood cells that help suppress disease] climbed from 10 to over 600. It's truly miraculous." But it wasn't easy emotionally. "I thought I was dying, and then all of a sudden I wasn't dying. I was in shock for about a year. Physically, it took me four years to feel like myself again."

But Carman has been through a significant shift. "When you come that close to death, it changes the way you look at things. It's like a rebirth; it cuts the b--s--factor. For me now, the quality of life is important: eating well, walking my dog in the park, spending time with my boyfriend. I still do a juggling act with all my medications."

Carman feels that consciousness has been raised and there is less stigma about the disease. He is grateful for the concern of people in the dance world. But the past is a string of sorrows. American Ballet Theatre's 1977 video of The Nutcracker starring Mikhail Baryshnikov and Gelsey Kirkland used to be broadcast on TV every Christmas. He says, "I can't even watch it now because half the dancers in it are dead."

Chris Dohse, a dancer/choreographer/writer who is also a proofreader, is torn between submitting to the new medications and just letting himself slide downhill. "I don't know if I want to buckle myself into the regime of the new cocktails. I don't want to go through that ordeal." Dohse, who tested positive in 1987 when he was dancing in Washington, D.C., was put on azidothymidine, or AZT, in 1990. AZT inhibits the multiplication of the AIDS virus, but it can have debilitating side effects. "I felt terrible every single day of that year," Dohse says. "It makes you tired, nauseous, headachy--dizzy and run-down. During that time they were finding that it works better if you take less of it. I got disillusioned and distrustful, so I don't believe anything the doctors say."

But for Dohse too, the news was at first a motivating factor: "Knowing I had the virus made me stop fiddling around. I stopped dancing for other people and started making my own work." Like Greenberg, he used his despair creatively. "I made a big dance for nine people that was going to be the final thing that I gave to the world. I kept revamping it. I didn't want to finish it because then it meant I was going to live, and have to make other work. This was supposed to be the everything-I-have-to-say piece."

He lost the few romantic figures in his life, which has left him with a strong sense of alienation. "Mostly I feel anger that I didn't get to go with them. They had these memorial services and dramatic narrative arcs, but I have to stay here and turn gray and have my teeth fall out and pay back my student loans. I'm lonely." Medically, he's not up for the new round. "They started saying I should take new medication to reduce my viral load. They said that to me in 1990 with the AZT. My blood data will improve but I'll feel awful." His T cells are under 100, and, after thirteen years, his viral load has gone sky high. Looking back, he says, "Back at eight years the data showed that thirteen years was the longest anybody had lasted before they started getting sick. I thought: OK, I got five years left; I'll make a five-year plan. For eight years I made six-month plans. I would have gotten a college degree back then if I wasn't going to die any day. I danced instead, thinking I'd go out in a blaze of glory. Little did I know I would keep lingering. I'm the boy who cried wolf because I've lived so long on this edge of despair."

Christopher Pilafian, on the faculty of the University of California at Santa Barbara, has found some measure of peace. He danced with Jennifer Muller/The Works from its inception in 1974 to 1989, eventually serving as associate artistic director. Now 47, he says, "It's hard to tell whether what I'm feeling is a result of the virus or of the natural aging process. I'm a little more methodical, less rambunctious now." Four years ago, he improved his T-cell count tremendously with the new medications.

Pilafian feels fortunate to have colleagues who are sensitive to his condition. "Once it was made known, the other teachers were totally supportive. When I was having a bad time, they were available to cover classes for me." He regrets the toll the virus has taken on the lives of dancers he admired as well as his own. "The middle years are an important period in a dancer's life: You've still got your chops and also your independence. I would like to have seen what Louis Falco would have done, had he lived past 50. If I weren't HIV positive, I might have focused on my work as a choreographer. Instead, I had to go into self-preservation."

In 1989, he attended a seminar that redefined AIDS not as a terminal illness, but as a manageable chronic infection. `To take the assumption of fatality off the diagnosis is very powerful. Now I'm doing things that support life: meditation, visualization, eating well and watching the purity of things. There was so much fear about the available medicines at that time. To deal with that, I used what I knew from dancing: imagery. I began to visualize the medications as rainbows, waterfalls and light.'

"At the conference, we were asked, `What is this apparent misfortune bringing to you that is a benefit?' It gave permission to look at your life in a different way. You could imagine the endpoint being closer. Then starts the dropping away of the nonessentials, which is a sacred, life-sustaining process."

These six dancers are, like the rest of us, many-faceted people. One of those facets, surely, is tremendous courage. Another is hard-earned wisdom. All of them agree on one thing: the need to tell young people to take precautions. Anyone can contract the virus from sexual activity, and drug users can get it from using a contaminated needle. Although a broad range of treatments is now available, not every patient does well on them, and the side effects can be devastating. The ultimate message is one of prevention: inform yourself, protect yourself, and have only safe sex.

RELATED ARTICLE: THE REMEMBER PROJECT

Dancers Responding to AIDS both celebrates the dance community and remembers those who have been swept away by this epidemic. Each year it sponsors The Remember Project, a noon-to-midnight marathon of performances by scores of dance companies. This year's Remember Project, sponsored by the Danspace Project at St. Mark's Church in New York City, inaugurates World AIDS Week on December 2.

DRA was founded in 1991 by Paul Taylor dancers Denise Roberts and Hernando Cortez. The money they raise is pooled with Broadway Cares/Equity Fights AIDS and goes to the AIDS Initiative of the Actors' Fund of America. The Actors' Fund distributes the money to people with HIV/AIDS to be used for rent, food, insurance and medicines. Since its founding in 1988, BC/EFA has distributed more than $40 million for such critically needed services.

Denise Roberts has seen the tragedy of AIDS up close. "What has brought me here," she said by phone, "are Christopher Gillis and Jeffrey Wadlington from [the] Taylor company. They became ill in the early '90s. I was seeing the day-to-day struggle, and I tried to help them as much as I could."

DRA has mobilized the compassion of dancers across the board. "Out of this tragedy," Roberts said, "we have been able to come together and show the strength of the dance community. The Remember Project involves the whole dance community--from downtown to American Ballet Theatre. With this array of dancers, lesser-known dancers can perform next to someone they have admired." All the dancers who perform, Danspace Executive Director Laurie Uprichard, and fifteen to twenty technical people also donate their time. Last year the event raised $30,000.

This year, despite a new $30 application fee to be considered to perform in the Remember Project, DRA received 170 applications--more than ever before. The group has chosen fewer--last year there were ninety eight--because it wants more time for the audience to pay tribute to the lives lost and those living with HIV/AIDS. Anyone can pay $5 to place a name on the Remember Project mural displayed on the altar. Choreographer-turned-nurse Senta Driver reads out the names of those to be remembered. This year the performers come from more than seventy companies, including Buglisi/Foreman, The Daring Project, Arthur Aviles Typical Theatre, Jane Comfort and Company, Limon Dance Company, Ron Brown/Evidence, the Wendy Osserman Dance Company and Robert Hill of ABT. (For a complete listing, visit www.dradance.org)

In addition, DRA has also sponsored an annual fund-raiser on Fire Island (which raised $72,000 last summer), a "Dances from the Heart" tour during the summer of 1996, two fundraisers with Mikhail Baryshnikov, and countless post-performance dancer-to-audience appeals. DRA also works with Dance Masters of America and the New York City Dance Alliance to raise money. If you want to contribute to these efforts by buying DRA holiday cards, T-shirts or hundreds of other items, call the DRA office at 212/840-0770 and ask for a catalogue.

DRA has a national program as well--its "Studio of the Year" competition. The dance studio that raises the most money for DRA wins a trip to New York to perform in the Dance Week Kick-Off at Lincoln Center in April. Dance schools may sign up online at www.broadwaycares.org. "We are trying," Roberts said, "to motivate young people across the country so that they can make a difference."

--Wendy Perron