At least 10 of the old friends meet in one of the back rooms at 10:30 a.m. every Tuesday.
Yet at 10:29 on May 15, David Taylor, 55, and Bob* (some men chose not to be named in full), 83, were the only ones there. Next to walk through the door was Keith, a 65-year-old man who immediately snaked his arms around Taylor.
"So how does your garden grow?" Bob asked Keith once he'd settled into chair.
"It's an everyday endeavor," Keith replied.
Over the next 10 minutes, the rest of the men shuffled in for their twice-weekly Daytimers support group meeting at Test Positive Aware Network (TPAN), an HIV/AIDS service organization located in Edgewater. Most have known each other since their pre-HIV days, when they were young gay urbanites taking part in a wave of sexual liberation that characterized LGBT culture in this country during the 1980s.
Objectively, the men are lucky to be alive. Besides Bob, who found out he was HIV-positive three years ago, the Daytimers rode the "second wave" of HIV infection in the early 1990s—just in time to be saved by the advent of protease inhibitors in 1996.
Twenty years later, their prognoses are less promising. They are full of medical terms—like Kaposi's sarcoma, a rare skin cancer, and lipodystrophy, the displacement of fat tissue that's a common companion of some antiretroviral drugs and that Keith and Bob share in the form of what appears to be a "pot" belly but is actually lipohypertrophy (added fat in the abdomen which can often be disfiguring and even painful). Myeloma, or bone marrow cancer. Strokes, heart attacks and diabetes. All the costly ramifications of aging, lumped into the side effects of a virus that costs sufferers $20,000 of medications a year just to keep in check.
Terry Lewis, 55, quit his job in 1995 after getting diagnosed with HIV, acute viral toxoplasmosis and diabetes. As he struggles to stretch his $16,800 disability annuity income over a year of rent, groceries and countless medical bills, Lewis said he's not sure which is more disheartening—that he suffers from a potentially fatal virus, or that he's going to survive it.
"I was supposed to die in a year," he said. "Now I'm going to live into old age—I didn't think I would—and that's terrifying."
First wave
As of 2010, an estimated 1.1 million people live with HIV in the United States, including 256,259 people over 55 years of age; 650,000 Americans with an AIDS diagnosis have died.
America discovered it had AIDS in fits and starts. In 1968, a 16-year-old boy named Robert Rayford died in Missouri from a disease no doctor could identify. In 1981, the illness was first observed clinically when a group of gay men displayed a strange clumping of previously rare autoimmune deficiencies. In 1982, the U.S. Centers for Disease Control dropped several names in favor of Acquired Immunodeficiency Syndrome, or AIDS.
HIV spread quickly around the world, centered mostly in the gay community in the U.S. and among heterosexuals in Africa, intravenous drug users, and those who received tainted blood (through transfusions) or blood products, especially hemophiliacs. Homophobia helped to fuel its spread in the U.S., because authorities were slow to react to a disease that often targeted people it already discriminated against.
Keith and Bob recalled their friends engaging in "barebacking," or sex without a condom, and "hanky codes," which allowed one man to identify the sexual preferences of another by the color of a handkerchief tucked in his pocket. Since so little was initially known about transmission, the community took on its own safer-sex education campaigns, but there were some who wanted to take the risk anyway.
Within a decade 130,000 men had contracted the virus. "That was the first wave of infection—the first paradigm," Lewis said, and the rest of the men nodded.
Lewis recalled getting called out at bars with his three best friends, all of whom were shorter than him. "They called us Dorothy and the munchkins," he said. Now Lewis' "munchkins" are all dead. Keith's closest friends are, too.
"It was like my own personal Vietnam," he recalled.
Before his illness forced him to retire, Keith worked as a bartender at several bars in the Chicago area and had made his friends within the "leather community" that frequented them. Though it began with post WWII biker culture in the 1940s, the "leather" lifestyle Keith experienced was a response by gay men against traditional effeminate stereotypes through hyper-masculine rituals, from sexual hierarchies based off military rankings to bondage, discipline and sado-masochism.
In fact, these men rejected "twinks" and "swishes" so vehemently that "if you mentioned the word quiche, a Leatherman would stick your head in the toilet," Keith recalled.
The leather community experienced a high rate of loss from AIDS. Keith's five best friends succumbed to AIDS in the early 1990s. Diagnosed in 1992, he barely made it to second wave. Along with his medication-induced belly, he has been struggling with fatigue and the aftereffects of a simultaneous heart attack and stroke he had several years ago.
"Hasn't it made you a more compassionate person?" David asked Keith once he finished.
"No," Keith said. "I was told by my shrink that I wear my heart on my sleeve."
"I mean, more understanding," David said. "I mean psychologically."
"Exactly," Keith said. "Yes, you're absolutely right. That's what the meds do to you."
Second wave
Terry Lewis said he hit rock bottom in 1995 on Christmas Day, the same year he was diagnosed with HIV. Halfway through a holiday visit, he was feeling bad and was admitted to a South Carolina veteran's hospital with a diagnosis of toxoplasmosis and a nearly nonexistent T-cell count of 25. A normal range for immune-supportive T-cells, or white blood cells, is around 500-1,000, and for those with HIV anything under 200 is considered an AIDS diagnosis.
Weak, shaking and near death, Lewis said he felt worse when his father began spooning hospital food into his mouth.
"I thought, he's feeding me, and I'm less than 50 years old," Lewis recalled. "He said I was a 40-year-old in a 60-year-old body, and he was right. This disease ages you."
One month later, Lewis' Chicago doctor called him "one sick puppy." Lewis drafted his will. Then he began taking a newfangled cocktail of antiretroviral protease inhibitors that would control his HIV into the present day.
Lewis became a regular at TPAN at around the same time. As he attended more of the meetings, he said he began noticing a pattern among the other HIV-positive men.
"I saw that people who organized their lives around it ... were living longer," he said. "People with crazy schedules—bartenders, chaotic people—were not doing so well with the AIDS."
Lewis revealed his HIV status to his boss, who understood and helped him set up an easier work schedule. He was lucky, he said; a computer company gave one of Lewis' HIV-positive friends extra work to do, and "watched him like a cat," in the hopes he would feel uncomfortable and quit of his own accord, effectively renouncing his right to the disability payments for which he was eligible if they fired him outright.
Lewis' coming out process differed from those of his peers, many of whom kept their sexual orientation hidden. He recalled the events following the death of his HIV-positive lover, Bob.
Bob's parents found out he had died, was gay, had a lover and had AIDS over a three-day period. Lewis thinks they never quite recovered.
"I learned from Bob," Lewis said. In 1996, he used a slideshow to narrate his experience with HIV to his family. He said one of the hardest parts was depicting anal sex in a way that wouldn't shock his "conservative farm parents."
"You can't. You just can't," Lewis said, shaking his head incredulously. "I tried to explain they used it as a form of birth control in Africa. My sister, who's a nurse, said, 'Yeah, I know a family who does that in the United States. Immediately my mom asked, 'Which family? What's their names?' Incredible."
Although Lewis remained on good terms with his family, HIV worked alongside diabetes to exhaust him out of his former job at Northwestern University's financial office. He makes $1,400 a month in disability payments. $743 of that goes to his rent, while medical bills, including monthly copays on his antiretroviral drugs, swallow up several hundred more.
"My one weakness is I love eating out with friends," laughed Lewis. "I go out to eat 'cause that's my social. That and SAGE [a senior support group] and Daytimers."
The Daytimers did not discuss money in depth, but many of them wondered aloud how they would be able to afford the thousands of dollars in medical bills left uncovered by their insurance plans.
"What kinds [of] seniors can afford those kinds of costs?" mumbled 63-year-old Ken, a frail gentleman who once wore thick makeup over the black bruises characteristic of his Kaposi's sarcoma. A former radiology clerk, Ken was fired from Grant hospital in 1997; he is thankful that happened, he said, because the hospital closed several years later. Now his severance package is the only thing keeping him off the street.
The Daytimers socialize primarily with each other and other older people. Most of the men at this meeting have known each other for so many years they can swap facts about each others' families and illnesses without hesitation. After this meeting, they're headed for a semiweekly pizza lunch. "I laugh, because years ago I'd go to bars," Lewis said. "Now I go to a recreational center for old people."
Most of them don't hit up Chicago nightlife often.
"Um, I don't have any desire to ... for sex at all," said Ken, his mouth twitching. "So I don't have to worry about that. That part is—"
"Over," said Bob.
"Over," Ken finished.
Third wave
In 2003, Rolling Stone ran a lurid story on an emerging trend in HIV transmission. Titled "Bug Chasers," the article painted a network of HIV-negative gay men obsessed with prowling the dark corners of Internet chat rooms for HIV-positive sex partners.
"HIV-infected semen is treated like liquid gold," wrote freelance journalist Gregory Freeman. "In this world, the men with HIV are the most desired, and the bug chasers will do anything to get the virus—to 'get knocked up,' to be 'bred' or 'initiated into the brotherhood.'"
Yet the translation of these desires into an actual trend is doubtful at best, according to experts.
"Most of the major discourse around bug chasing … was a media-generated myth," said Will Nutland, former Head of Health Promotion at Terrence Higgins Trust in London and current doctoral candidate in the London School of Tropical Medicine. "I could talk to 10 men online who could say they wanted to be 'pozzed up', [but] if you got them in the room, it would be something totally different from what you thought they were talking about."
He's not alone in his opinion. According to a page on the AIDS Healthcare Foundation website, the "phenomenon" of which Freeman writes was counteracted by AIDS advocates as "an insignificant subset of reckless gay men who get the disease in myriad ways." After the article appeared, Dr. Bob Cabaj, its main official source, asked to have his quotes removed because he'd never said them.
The Daytimers were unaware of the article's questionable status. They were still reeling from their meeting two weeks before, in which they discussed the fad in detail. They found it incomprehensible that the newest wave of urban gay men could ignore several decades of "cultural genocide" in pursuit of such a reckless fad.
"We need to go to these groups and tell them, it's not fun counting out your pills," Keith said, and the rest of the men murmured in agreement. "When there's 13 pills for a morning and seven for a night, it's not fun. I don't understand or comprehend why someone is asking for it. If I would've had the choice, I would've said, 'I don't want it.'"
The side effects of some antiretroviral medications can be as inconvenient as they are dangerous, from loose bowels and nausea to kidney damage and increased risk for cardiovascular disease. Lewis, who schedules his travel routes around bathrooms to take care of his diarrhea but rarely discusses or displays his symptoms in public, wondered whether people understand just how much of the battle against HIV takes place behind the scenes.
"I wonder what my family thinks about all of this," Lewis continued. "They don't see I have problems with diarrhea, and when I stay in bed 'til 11 o' clock 'cause I'm so tired. They see me at my best."
For details on support groups at Test Positive Aware Network, see www.tpan.com .
