AIDS activist, Youth HIV/AIDS educator and long-term HIV/AIDS survivor - Bob Bowers' www.onetoughpirate.com

HIVictorious

Bob Bowers is in-your-face muscular.

He's tattooed from neck to ankle and silver hoops dangle from pierced ears.

Photographs in his East Side Madison apartment show him clutching women by their curves or straddling a Harley-Davidson, bear-brown eyes crinkled in a grin.

Bowers looks like a pirate who eats small children, as one buddy, a Los Angeles police officer, once put it.

Beefy and heterosexual, he defies stereotypes of a man infected for 21 years with human immunodeficiency virus, much less a sensitive and passionate advocate for HIV and AIDS education.

Bowers, 41, has pared his life down to those two essentials: Staying healthy and reaching out.

ACT II AIDS ride organizers invited Bowers to speak at today's opening ceremony as well as at the closing ceremony on Aug. 7.

"I'm the Mother Teresa of HIV," Bowers said in his raspy voice. "I'm spreading the word but not making any money.";

Bowers is part of a pandemic that has infected 38 million people and killed more than 20 million people worldwide. Nearly 1 million Americans are infected with HIV.

In Wisconsin, more than 8,400 people have contracted HIV -- 5,500 of them developed AIDS -- since 1982.

Activism

At a recent speaking engagement, summer campers at Jefferson Middle School first notice Bowers' tattoos and muscles. But it's his sensitivity and blunt delivery that get his point across.

Over the scraping of chairs and murmuring, an AIDS Network staff person gives his AIDS/HIV tutorial.

But once Bowers starts talking -- covering topics most adults talk around -- the teens stop fidgeting and even shush each other.

"I got HIV from using a needle one time. One time," he tells them, brown eyes full of tears as he holds up his index finger. He points next to his pelvis. "I was thinking with Mr. Twinkie instead of my brain."

For 40 minutes, he talks about monogamy, virginity, peer pressure and condoms, using terms not often heard in school counselors' offices.

"Using condoms means you are having safer sex, not safe sex," Bowers says. "A condom can break. ... Hey, man, you can get stuff that makes AIDS look pretty."

He warns girls that boys will say anything to convince them to have sex without a condom, mentioning lines older women have probably heard but that tender girls might gobble up.

"Does it hurt?" one boy asks about AIDS. The kids also question him about drugs, death, myths and anal sex. They want to know how people reacted to his HIV. He answers them all.

"There are no stupid questions," he says repeatedly.

Living with AIDS

Since his diagnosis, Bowers has been in the hospital numerous times, watched friends die and watched his 11-year marriage flourish and then die.

His tattoos tell a story.

In 1990, he got his first one, an eagle, just because he wanted one. Subsequent tattoos have more meaning.

"Courage" inside a heart on his arm marks his 15th year of survival. His 17th year is represented by the Japanese symbol for "warrior" on his lower arm. A mako shark on his left arm pays homage to one of his 40 friends who have had AIDS and died.

"The next (tattoo) is going to ... be a phoenix," Bowers said. "It symbolizes ... my willingness to never give up and the beauty of life."

Bowers contracted the virus in 1983 when he shared a needle to shoot up crystal methamphetamine, a pure form of speed, with a girlfriend and another couple in a Hollywood hotel. He was 19.

"I (injected drugs) one time due to peer pressure and experimentation," he said. "I couldn't believe that was all it took."

Swollen glands and flu symptoms sent him to a clinic a year later. Doctors told Bowers, then a clean-cut body builder, he had AIDS-related complex -- now called HIV. He was among the first 100 clients at the AIDS Project Los Angeles. A year after his HIV diagnosis, he developed AIDS.

"I went back two or three times and got re-tested," he said. "I didn't look the part and I didn't feel the part. ... I never imagined in my wildest dreams I was dying of something."

Initially he thought it was the end of a life that had already seen a lot of suffering.

"I don't think people realize the magnitude about the length of survival and all the hills and valleys I've travailed to get here," Bowers said.

He asked questions, participated in surveys and got involved with HIV activist organizations. He learned he didn't have to live the rest of his life alone.

No woman has ever said she didn't want to be with him because of his status, but he admits it's a complication.

"It's like having a third person in a relationship. ... I'm always afraid I would possibly infect that person, and there's a part of me that feels tainted or dirty," Bowers said.

Living for connections

In Wisconsin, where nearly 60 percent of AIDS cases stem from two men having sex, Bowers puts a new face on advocacy, AIDS Network caseworker Mary Vasquez said.

"HIV in the U.S. is primarily a disease of homosexual men," said longtime friend Howard Jacobs, who contracted the virus as a teen in New York having sex with a man. " Bob has the ability to bust that stereotype. It's a very, very powerful thing."

Bowers puts that and his positive energy to good use.

He talks to schools and other youth support organizations, often working with AIDS Network staff.

"Over the years, AIDS groups (on the West Coast) have become corporate giants, a very cold machine, so to speak, where there's locked doors, security guards," he said. "AIDS Network has been a lifesaver and when I speak for them I say how grateful I am to them. They are compassionate to their commitment and although they're well-established, it's still very grassroots."

Bowers spends Tuesdays talking to small groups of inmates at the Rock County Jail with AIDS Network staff. His heterosexuality helps alleviate discomfort among the men when it comes to discussing HIV, he said. Women tend to open up more quickly and ask questions.

Living so close to death has made him more spiritual, more inclined to forge real connections with people.

"When I really talk real with somebody, that's when I know I'm glad to be alive," he said.

Bowers still cries over stories people tell him. One juvenile offender told of an uncle who died on the porch to which his family relegated him after he contracted the virus.

"Dying on your porch," he said. "I can't believe people still do that."

Bowers' efforts extend into cyberspace via his Web site, www.onetoughpirate.com. When he's not feeling well, it's the people who reach out to him that help him stay positive.

" Bob is a champion and a voice for the underdog," Jacobs said. "He's not afraid to tell what his life is like and what he needs to survive. Madison is lucky because he can relate that to legislators."

Bowers said he's connecting with Madison, not just the HIV-positive community.

"I love it here," he said. "It reminds me a lot of Portland (Ore., near where he grew up). It's not as wild and crazy as Los Angeles. I can become involved more and still take care of myself."

Struggling to survive

A big part of Bowers' story are the drugs helping him live. They're also the worst part of survival.

He lists medications like he's talking about pop stars. He's familiar with them all.

In 1989 he began taking AZT. The resulting stomach pain curled him into a ball.

Then came protease inhibitors and combination therapy or drug "cocktails," which is like being on chemotherapy.

A documentary, " The Fire Within," by Leanne Whitney followed Bowers through 1999.

The film shows him fighting bouts of vomiting which left him weak and moaning on the shoulder of his petite former wife, Shawn.

"I don't want to puke anymore," he said in the film. "I'd rather die than keep taking this (stuff)."

His body no longer makes its own testosterone and his thyroid doesn't work, so he takes drugs to replace their functions. One HIV drug elevates his cholesterol, so he takes another to control it. One drug damaged his heart. Another put him in a wheelchair for months with nerve damage.

One HIV drug, which he still takes, can give him diarrhea without warning.

Over time, his virus has become resistant to most drugs. "Until last year, I had no treatment options left," Bowers said. "I was doing non-traditional combinations on a wing and a prayer -- sort of the anything-is-better-than-nothing therapy."

For some reason, it's working. His virus is at an undetectable level in blood samples.

He takes about 30 drugs a day in two doses. He hurries them down in two or three swallows, punctuated by a gulp of water. He injects testosterone into his thigh once a week.

He'll continue this combination until his virus learns to fight it. Then he'll try the new drugs on the market.

"I'm trying to get as much life out of this drug as I can," he said.

His t-cell count has been as low as 106 -- below 200 is full-blown AIDS. It's now 540, so his current status is "AIDS asymptomatic." He'll always have AIDS, but he's free of AIDS-related symptoms.

Through it all, Bowers has been his own advocate, having doctors change his cocktail until he's taking a minimal number of drugs with the least side effects.

"I'm not OK with just being alive," he said. "I want more."

Death When asked about death, Bowers first talks about suicide, not death from AIDS-related illness.

Almost half of Bowers' 40 or so friends who have died with AIDS committed some form of suicide -- either giving up on medications or taking action to end their life.

"My greatest accomplishment is survival in general," he said. "I'm committed. I'm not going to take the easy way out."

His longevity struck him on his 35th birthday, the age at which his mother died of breast cancer when he was 9.

He had been sure he'd die before turning 30. "That was prior to AZT, so 35 just was not going to happen," he said. "Thirty-five was just, like, wow. It took things to a deeper level spirituality."

Survival has meant 20 years of medications and illness, of watching new acquaintances react to his HIV status, of friends dying, and of people greeting him by asking "How are you feeling?"

But mostly, his life's a blessing.

"That's why my speaking is so emotional," Bowers said. "I'm out there way beyond my time. I've seen miracle after miracle after miracle. Too many to count. ... And I've survived."

~Lisa Schuetz Wisconsin State Journal