He rarely cries anymore, despite decades of personal and professional pain and heartache, combined with many, many deaths. Mike Barnes is cried out, he says, the direct impact HIV/AIDS has had on him over the past 26 years.
Barnes, 55, was with his first long-time partner, Donald Hendricks, from 1984-'89. Hendricks was diagnosed with HIV in 1986 and died in 1989.
Barnes was then with Sky Bixby from 1989-'97. Bixby learned he was HIV-positive in 1995 and died in 1997.
Barnes is now partnered with Bart Rarick, a relationship that started in 1999. Rarick, 53, has been HIV-positive for 22 years, and the last five have been a "living hell," Barnes said, as Rarick has endured serious liver issues, caused by his HIV and cancer treatment over the past two decades. Rarick has dropped from 170 to 125 pounds and even struggles at times getting out of bed or eating.
Barnes also has been a bowler since the mid-1980s in the local gay leagues, which have lost countless former participants over the years to HIV/AIDS. Plus, Barnes is a pharmacist at a Lakeview Walgreens, so he has met customers who became casual friends during their battle with HIV/AIDS—until many died.
Barnes learned last April, after a gut infection got worse following a routine shoulder surgery for arthritis, that he too was HIV-positive.
"Everyone always wonders why they're here in life. After Sky [ died ] , I figured that must be my lot in life: I'm here to take care of HIV guys," said Barnes, who lives in Chicago's Lincoln Park neighborhood. "There are not a lot of mid-50-year-old gay men, because so many of them died in the 1980s. That's why I sort of feel like a survivor.
"HIV/AIDS has been devastating over the past 25 years, but also has brought me joy because I feel, at times, like I have been able to beat the virus."
The battle Barnes fights now is alongside Rarick, who measures daily successes with simple ventures, such as leaving their house—as Rarick did one early January day—and not for a doctor's appointment.
After meeting in 1999, Barnes and Rarick quickly realized that they had many of the same values, as each was raised in Michigan. They became really good friends, and then started dating. Ultimately, they became, "best friends," Barnes said. They moved in together in 2000.
"It was a fun trip until five years ago," said Barnes, who vividly recalls the exact moment their lives changed.
It was April 15, 2007, and they were flying home to Chicago from Palm Springs.
"On the flight, I could see that something wasn't right. He look fatigued; he looked awful," Barnes said.
The next day, Barnes convinced Rarick to go to the doctor, "and that's when, literally, all hell broke loose," Barnes said. "They thought he needed a liver transplant, but discovered his liver actually was really healthy."
However, he had circulation issues in his liver and many blood clots.
"That has been our constant issue since [ 2007 ] ," Barnes said.
Rarick is now just trying to put weight back on, which is no easy task, Barnes said. He was a flight attendant for American Airlines, but has been on a five-year leave of absence, the company limit.
On Jan. 8, Rarick was awake most of the day and able to feed himself, "and for someone who hasn't done [ those two things ] in a while, they are big things," Barnes said.
Rarick also in early-January backed off his interest in dying.
"He was ready to go, ready to die. We had had many conversations [ about death ] because he wanted to die when he was happy. He had gotten what he wanted out of life, including our relationship," Barnes said. "But then, almost out of the blue, he decided it wasn't time to die, that he said he still had things he had to do. Mostly, he doesn't think I'm ready to live by myself, yet."
Barnes, who has lived in Chicago since 1983, sees a mental health counselor himself to help his emotional roller coaster. He also views himself as, "the world's best caretaker." But still, "it's been very tough, very very tough for me."
But Barnes has friends for support, plenty of close, supporting friends. Or, as he says, "some of the best friends in the world." Including "the ultimate faghag, who is proud to be called a faghag."
Barnes and Vicky Wagner met in the late-1980s in the gay bowling league at the now-closed Marigold Lanes. They were immediately attracted to each other's spirit and sense of humor, Barnes said.
Wagner, who is straight, is still bowling side by side with Barnes—for a team long known as the Gutter Queens.
"She would do anything for me, literally anything," Barnes said. "She is one of my main pillars—through the death of my parents, the death of my dog, losing my last partner, and now through the struggles with Bart."
And there have been plenty of struggles over the past five years—with rock-bottom coming between Christmas and New Year's 2010. Rarick went into the hospital for a routine colonoscopy and almost died, Barnes said.
During surgery, doctors nicked a vein, causing excessive bleeding.
"We really felt that was it," Barnes said.
The struggles have changed Barnes' approach to life. Normally, a detailed, planning person, he now doesn't—or can't—look farther than the next day.
"I live one day at a time," he said. "I can wake up and he's [ doing ] really well, or, I can wake up and he's really bad. So, we don't make plans. Not even a week ahead. There is no planning ahead," Barnes said. "That's very frustrating, especially for a guy who likes to plan every step of his life."
Barnes learned he was HIV-positive last April and, despite years of unsafe sex, was "surprised" at the news, especially since he was HIV-negative two weeks earlier.
Barnes had a gut infection following shoulder surgery and his doctor ran an HIV test, just to re-confirm that HIV was not an issue.
Sure enough, a resident at the local hospital had his result and asked, "Is your partner around?"
Startled, Barnes replied, "Why do you need my partner?"
The resident answered, "We'd just be happier if he was here."
Barnes knew what he was about to hear. "I guess that tells me what the answer is," he said to the resident.
"I didn't really care [ about the test result ] because I've dealt with [ HIV ] so much, for so long that I almost feel like I've been positive for years," he said. "I was disappointed more than shocked [ at the test result ] because I just felt like I was one of those people who would almost be immune to HIV.
"But I knew there was a chance," of being infected.
Barnes said he enters the New Year "very, very healthy," other than "normal growing old issues." He still bowls every week alongside Wagner, a stress relief and escape from HIV/AIDS for Barnes. He also anxiously awaits spring to return to his passion for gardening—an at-home oasis away from HIV/AIDS, where he planted more than 700 tulips in 2011. Barnes and Rarick have won the gardening contest in their 70-unit housing association for the past two years.
Victories are few, have been few, for Barnes—but he battles on.
"I don't know how I do it, I just do," he said.
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.
