Brave New World: Living and Dancing with HIV

July 31, 2007

Nearly a quarter of a century has passed since reports of a voracious disease with an ability to destroy immune systems appeared in
The New York Times
. At the time, neither the disease, nor the agent that caused it, had names. Today they are known only too well: The human immunodeficiency virus (HIV) causes Acquired Immune Deficiency Syndrome (AIDS). In the 1980s and 1990s, AIDS cut a devastating swath through the dance world, cutting short too many lives and careers.

HIV remains an enormous global problem in 2005, despite the fact that breakthrough medications like protease inhibitors and antivirals have saved a lot of lives in the last decade. In the dance community, HIV has many faces—male, female, black, white, straight, gay, healthy, or compromised. Five dancers, choreographers, and teachers stepped forward to tell
Dance Magazine
how HIV has rerouted their lives—and to demystify the issue.

One dancer who has weathered his fair share of ups and downs is Jaime Galindo, who began his dance training at age 17. Galindo came to New York in the early 1980s, performing with the Eleo Pomare Dance Company and in numerous industrials. In 1986, when many in the dance community were dying of AIDS, Galindo suddenly suffered spasms of vomiting backstage during a performance. His subsequent hospital stay proved unbearable. “All the doctors wore masks,” says Galindo. “Food trays were left in the hallway. They put tape around my room, and no one would enter or clean my room.”

For eight years, through bouts of streptococcal meningitis and wasting syndrome that, at one point, cut his body weight in half, Galindo somehow boomeranged back and kept dancing. To keep his HIV status a secret, he says, “I would work some, and then just disappear for a while.” Eventually, doctors consulted
on his survival techniques, which included the steadfast support of his ex-wife, Victoria Burke, and a sense of humor. (Galindo devilishly liked to stun nurses by jackknifing himself into a completely folded hospital bed.) Despite a sight impairment in his left eye from a bacterial infection (“It’s hard to spot,” he jokes), Galindo adheres to a combination drug therapy regimen that’s working. Recently, he completed a degree in dance education through the 92nd Street YMHA Dance Education Lab and SUNY Empire State College with an aim to teach kids in city schools.

Richard Daniels, on the other hand, returned to dancing at the age of 43 after his HIV diagnosis. Having stopped 15 years before to work as an arts manager, producer, consultant, and interior designer, Daniels resumed dance classes to counter the burnout of caring for his hospitalized life partner, Curtis Sykes. When Sykes died from AIDS-related causes in 1994, Daniels concentrated on taking care of himself—and that meant rejuvenating his body and soul by dancing and choreographing. Hungry for a serious artistic outlet, Daniels called his friend Molissa Fenley, the choreographer. “Mo, can I have a solo?” he asked. Fenley danced three solos for him in her studio and said, “Pick one.” Since then he’s performed works by choreographers like Zvi Gotheiner and Peggy Baker.

Though he’s remained asymptomatic of AIDS, Daniels has experienced debilitating side effects from the medications. Crixivan, a protease inhibitor, bloated his rib cage. “I can look at videotapes of my dancing and tell you what drugs I was on because of my body shape,” says Daniels. Although his own choreography doesn’t deal directly with AIDS, he says it’s informed by “looking at an altered world.” As far as what keeps him going, Daniels says, “Dancing is the only thing I really want to do.”

For Fay Simpson, the connection between dancing and healing also bestowed a new sense of life’s purpose. After dancing for six years with the Erick Hawkins offshoot Greenhouse Dance Ensemble, and RUSH Dance, Simpson became disenchanted with the modern dance world and considered jumping ship. Then, in 1987, she unexpectedly tested positive for HIV. After an initial period of shock, she says, “My eyes got bigger.” She questioned what life she wanted, if that life only lasted five more years. “Before that, I felt like there are so many choreographers, what do I want to say? Suddenly I felt like I had a lot to say,” says Simpson. Her creativity coalesced in the formation of her own physical theater troupe, Impact Theatre, where she produced, directed, and performed 15 works.  One of the highlights was her signature one-woman show,
Trapped In Seven
, a personalized essay on the conquest of the emotional barriers of victimization, which she performed at The Actors Studio in New York, the Harold Pinter Theater in London, and for the opening of World AIDS Day in Tennessee.

Simpson, nevertheless, navigated bumps in the road, like gritting her teeth through tasteless AIDS jokes and rejoining the dating scene, where many equate HIV positive with damaged goods. (She’s happily involved with a man now.) Simpson, 48 and healthy, has taken her hard-earned woman warrior perspective into the classroom by teaching her self-conceived technique called The Lucid Body, a chakra-based method geared for actors but also helpful for “dancers who seek emotional clarity in their work.” Though she is pleased to be viewed as a female HIV positive role model, she doesn’t necessarily want to be pegged just as “an HIV artist.” Instead, she says, “I want to be judged on the merits of my work and my teaching.”

Lawrence Pech, a principal dancer with San Francisco Ballet, seemed like a poster boy for youth, good looks and vitality. But in November 1990, after partnering the legendary Evelyn Cisneros in the now ironically titled ballet
The Comfort Zone
, his back went into excruciating spasms. A biopsy on his 30th birthday revealed a tumor on his spine, the result of non-Hodgkins lymphoma. In routine blood tests, the doctors also found that Pech was HIV positive. That double whammy, says Pech, “kicked my butt.” Never one to cave in, Pech gave himself ballet classes two weeks after the surgery and self-produced an evening of dance at the Columbarium in San Francisco the following June. “I went straight from chemo to the theater,” says Pech. “It made me get off my feet.”

Pech now serves as the ballet master and resident choreographer for the San Francisco Opera and co-directs his own group, Lawrence Pech Dance Company. He’s been on nearly every HIV-related medication and has suffered side effects, but his viral load remains at zero. Since his diagnosis, Pech has choreographed over 30 musicals, and graduated top of his class from the San Francisco Conservatory of Music with a B.A. in composition.Â

Given that resume, the last thing Pech wants is for people to see HIV as a liability in terms of a successful life. “Those who are HIV positive shouldn’t be embarrassed or feel any less of a person,” says Pech, who lives with his long term partner. I see a lot of people hiding. That’s one reason why I wanted to be interviewed for this article.”

Unfortunately, there are those like director, choreographer, and teacher Craig North, for whom the drugs have not worked miracles. North was a self-described workaholic who started out as a “barefoot baby,” performing with the Larry Richardson Dance Company in the 1980s in New York. “Then I got swallowed by musical theater,” says North, who juggled the roles of choreographer and lead dancer in road shows like
and My One and Only. Eventually, he worked 12 months a year, splitting his time as an adjunct professor at Wagner College on Staten Island and as artistic director of Music Theater North at SUNY Potsdam.

When he discovered his HIV status in 1995, North continued to work full-force, having inherited from his family a “whatever” attitude about doctors and illnesses. After three years and a loss of 35 pounds, he finally said, “I’ve got to stop pretending this is not a problem.” North went on disability and admits that, “It’s been a roller coaster,” living with a shattered immune system, 17 prescriptions, severe neuropathy (numbness of the extremities), and ongoing hospitalizations. But North also came to a major realization. “Whenever I had a to-do list, my name was never on it. It was all outward, looking after other people, making sure my students had what they needed,” says North. “The last few years have given me an opportunity to figure out what makes

Discriminatory behavior against those with HIV still remains a concern today. A lawsuit brought by North against a New York employer based on the suspicion of his HIV status 10 years ago was settled out of court. And Galindo still feels some bitterness about the hypocrisy he perceives toward the disease in the performing arts. “Everyone was wearing the red ribbon, but they wouldn’t give you a job,” he says.

Pech laments poor AIDS education, particularly the abstinence-only variety, leading to misconceptions about transmission. “There are some nuts out there saying you can contract HIV through tears and saliva,” he says. North adds that, “There’s still a concern about what bathroom or silverware you use, things we dealt with in the ’80s. There’s a whole new generation out there getting pregnant and seroconverting.” (Seroconversion is a change in HIV status, detected through antibodies in the bloodstream.)

And to be very clear, there is no cure for AIDS. The medications can keep the disease at a manageable level, like diabetes, but not, as in North’s case, for everyone. Nevertheless, having made it through to the other side lends these artists a profound sense of wisdom.

“There are so many of us long-term survivors,” says Simpson. “As a survivor, I feel so lucky. I feel like I need to give back.”

Joseph Carman is a contributing editor for
Dance Magazine and author of Round About the Ballet (Limelight Editions, 2004).