A Pirate’s Crusade

by | Oct 5, 2014 | 0 comments

At 19 years old, Bob Bowers became one of the first cases of HIV documented. Now, at 45, he looks back at whom he’s become after living longer with the disease than without.

First, some perspective. Imagine it is 1983. You are 19 years old, living in southern California. Your idea of the basics isn’t food, shelter and clothing but sex, drugs and rock ’n’ roll. You don’t have much in the way of family, but friends make up for that. You are unattached and hungry. You can go anywhere and do anything. In a word, you’re free.

Then, you get sick.

At first, no one knows why. You are told it is cancer or an autoimmune disease. It takes a couple of years and a newly developed test to determine your diagnosis: AIDS. What do you do? If you’re Bob Bowers, your illness becomes your crusade.

Fast forward to 2008. Bob Bowers is a mainstay in Wisconsin’s HIV/AIDS activist community. If you’ve been to an ACT Ride or an AIDS Network benefit, you cannot have missed him.

Bob’s head is shaved, and his glasses are thick-rimmed. What he lacks in height, he makes up for in muscle (think tree trunk or Marine arms). And then there are the tattoos. Like Bob, they are vibrant and bold: waves and skulls, webs and flames, a bluebird, a phoenix, a heart with a banner reading “Courage”–one tat for every year he has been positive.

Bob–aka One Tough Pirate–looks like gym freak meets ultimate fighter meets beatnik. That’s not too far off because Bob travels in all those circles–and more.

Bob has been living with AIDS for 25 years – a quarter century with a disease that owns his body and his life. Twenty-five years with a disease that has a stigma like no other. Twenty-five years with a disease that has no cure, only experimental drug after experimental drug. In those 25 years, Bob has made HIV/AIDS awareness his cause. And although not gay, he has also become an outspoken activist for gay causes.

After being diagnosed, Bob felt fear sink in. AIDS-related complex (or ARC, as it was often called then) causes severe fatigue, swollen glands, compromised immunity and a lot of unanswered questions. He was told he’d have maybe ten years to live. For Bob, this conjured up his mother’s short life. When he was ten, Bob’s mom died of breast cancer. She was only 35. Bob was certain that, like her, he would not live to see much more than 30. In his words, “I thought, ‘I’m dead at 32. I’m fucking dead.’”

By the late 80s, Bob was receiving treatment for HIV/AIDS. The disease made him sick, and the drugs made him sick. He also began participating in the culture of the disease. He went to walkathons and dance-athons. He kept on being Bob: loud, uncompromising and passionate about life, if a little lost. He just did it as someone with AIDS.

Then in 1999, a friend convinced him to watch the Tanqueray California AIDS Ride. He resisted. In fact, he says, “I went only out of guilt.” But it turned out to be something he never forgot. “Looking into the eyes of the riders when they came in … it was life changing.” The next year, his wife, Shawn, whom he had married in 1990, cycled the 575 miles from San Francisco to Los Angeles as part of the Seventh California AIDS Ride, now called AIDS/LifeCycle. By 2002, Bob was enmeshed in the rides. Although he doesn’t cycle – Bob happily admits he’d rather be on a Harley – he lives for the rides. He explains, “The Ride pushes everybody. It breaks down façades. There is nothing else that can mirror what it is like to live with HIV or how we should respond to it.”

In 2004, after a divorce and a stint living in Kenosha, Bob moved to Madison. It didn’t take long for him to get involved in ACT, the Wisconsin AIDS Ride. He volunteered to speak at Ride orientations; he crewed; he looked the riders in their eyes when they came in. Today, he is the check-in lady. Whether in shorts or a skirt, Bob is there to make sure all the riders come in – and to give them each a hug.

Before moving to Madison, Bob often spoke at high schools and fundraisers about HIV/AIDS awareness. Once in Madison, he founded HIVictorious, a nonprofit organization dedicated to creating HIV/AIDS awareness. But it’s more than that. It is a career, a calling, a catalyst. Through HIVictorious, Bob lectures, gives interviews, and volunteers his time to other organizations, such as Camp Heartland in Willow River, MN. He encourages, educates and challenges his audiences. He wants people, especially young people, to know that sexually transmitted diseases (STDs) are serious business. In the way only Bob can, he holds up his experience as a warning.

Given the choice, Bob chooses Madison over anywhere else, hands down. He is amazed by the access he has to the media and to politicians. He says, “There’s no way I could walk into the L.A. mayor’s office and have a talk with him about HIV/AIDS.”

And it’s not just talk. Bob conceived of a contest where students created posters answering the question, “What if it were you?” (meaning, “What if you were HIV positive?”). Madison Mayor Dave Cieslewicz and Congresswoman Tammy Baldwin got involved. Both have given written answers to the question, and both have hosted the contest winners at their offices. Bob is proud of these connections. He says, “We’ve affected them as well. They have stepped outside of their comfort zones.”

Bob says that starting HIVictorious and its various projects “wasn’t business, it was personal. It’s not work, but an extension of me.” He likes what he’s doing and will continue to come up with new campaigns, but he doesn’t want to expand. He’s content with his small volunteer staff and the small amount of monthly revenue from private donations. He explains, “I don’t want more overhead. I want it to be grassroots and heartfelt. I don’t want to lose myself. You start taking federal or state dollars, and your hands are tied.”

Even after how far he’s come, Bob continues to deal with fear. He takes about 15 pills each day, and on some days, such as the day of our interview, he still pukes. But he says, “Today I barf, and I take it in stride. I don’t give up and think I’m done for the day. Instead, I think ‘That’s how today turned out.’” He credits the good doctors he has, the gay community, and the people closest to him for helping him put fear aside.

To be sure, Bob is driven. In all he does, he pushes himself. Why? That’s just who Bob is. “If it wasn’t AIDS, it’d be something else. Who knows? I might have gone to school. Or been a CEO. Or a Hell’s Angel.” But because of a shared needle or unprotected sex – he’s not sure which ultimately caused him to contract HIV/AIDS – he is HIV positive. And so he fights the only way he knows how: continuously, inventively, and genuinely. Thinking ahead to turning 45 this May, he says, “Given the hand I’ve been dealt, I’ve played it pretty well.”

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