Chicago Tribune - June 17, 2001
Jeremy Manier, Tribune staff reporter

The human scale of AIDS can get lost in the staggering numbers the disease has racked up since the medical community first reported its presence in June of 1981. Blazing a horrifying path across continents, AIDS has killed almost 22 million people worldwide, with 36 million more infected with HIV, the AIDS virus.

In some ways the pathogen's progress is starkly impersonal. The virus does not care whether its host is a suburban retiree, a Kenyan soldier, or a gay Chicagoan. It casually jumped the species barrier early last century: That's when scientists believe humans contracted the virus from chimpanzees in Africa.

Yet it is personal narratives--one drug addict's sharing of a needle, another person's vacation to Southeast Asia--that have shaped the global epidemic's deadly course.

A single drug user traveling from Ukraine probably was the source of a huge outbreak in Kaliningrad, Russia, in 1996, according to studies of viral DNA. Between July and October of that year, the rate of new infections in Kaliningrad shot from less than 1 per month to more than 100 per month.

In 1986, virtually the only victims of HIV in Thailand were a handful of male prostitutes. By 1988, the virus had spread to more than 5,000 people--an explosion that DNA studies have traced to one "founder virus" introduced to the heterosexual population from outside the country.

Wherever it has struck in this age of global trade, HIV has followed what writer Malcolm Gladwell calls the Law of the Few--the tendency during an epidemic for a small group of people to infect a much larger group. So it was that Gaetan Dugas, a Canadian flight attendant sometimes called "Patient Zero," infected dozens of people in New York and San Francisco during the first years of the disease.

Despite the lives new treatments have saved, the fight against AIDS still is being lost on many small and large battlefields.

The combination therapies that can slow the disease in many patients have not helped the 25 million people living with HIV in sub-Saharan Africa, nor have they prevented an estimated 40,000 new HIV infections each year in the U.S.

And every day, the virus from the rain forests claims more victims in the Midwest.

Some of their stories of torture and triumph are included in a new volume called "The Faces of AIDS: Living in the Heartland." The book, compiled by the Chicago Department of Public Health and released this month, contains interviews with HIV-positive people living in 11 Midwestern states, from a deaf Native American man in Minnesota to the only infected person in Norfolk, Neb.

Some of the book's subjects are healthy and full of hope.

Others are near death. Taken as a whole, they offer a remarkable testament of how HIV has invaded and changed whole communities.

The following are edited excerpts from the book.

Jane Fowler, 65, Kansas City, Mo.

Fowler, a former journalist with The Kansas City Star, traces her HIV infection to New Year's Day, 1986. Divorced three years earlier, Fowler spent the night with a longtime friend whom she had dated on and off for several years.

"After celebrating the New Year by sharing an evening filled with laughter, dancing and champagne, we further celebrated by having sex. Unprotected sex.

"I'd lived a conventional lifestyle. I didn't do drugs. I was a virgin, by choice, on my wedding night. And I enjoyed 23 years of monogamous marriage before my husband and I separated.

"When we became intimate, it didn't occur to me to inquire about his sexual history or preference. When I finally called him in the spring of 1992, I asked him if he was infected.

`No, of course not,' he sputtered. `That's strange,' I said.

`I'm HIV-positive and I believe I can trace my infection to a time when we were together.' He abruptly hung up.

"His death made me reconsider my own life. Why not publicly acknowledge my predicament and bring a prevention message to uninfected people, particularly those my own age?"

Derrick Davis, 35, Tulsa

Derrick Davis has been a drag queen since he was 18, sporting an alter ego named Donisha.

Six months after he graduated from high school, Davis met Juan. They were together until 1998, when Juan died of AIDS.

Juan's failure to tell Davis about his status led to Davis' infection.

"I knew I wasn't positive before that. I had been tested," he said. "I never got angry until he died. It was the strangest thing. My love never changed, it never ever wavered. I can't explain why."

He now works on HIV prevention among gay men of color in Oklahoma, helping build a coalition of black churches to fight AIDS.

"I sat one-on-one with Baptist ministers throughout Tulsa. I approached them and said, `Let's be real here. It's time. I'm not asking you to talk about HIV; I'm asking you to allow me to do it. And if you don't want me to do it, we can get you the education so you can do it. But it needs to be done.' The first year I did that, I had, like, six churches agree. Last year, for the first time, we held World AIDS Day in an African-American church, one of the oldest African-American Baptist churches in Tulsa.

"People say, `How are y'all doing that in little-bitty Tulsa?' It didn't happen overnight."

Davis decided to retire his drag persona Donisha in April--a casualty of his growing ministry, growing bills for HIV medication, and growing dress size.

"Jackie O. was my role model, and Princess Di. Those two girls were just the ultimate. If I can't look and dress like that, I don't want to have it."

Alice Rodriguez, 46, Chicago

Rodriguez, who contracted HIV as a result of her heroin addiction, spends as much time as possible these days with her 3-year-old granddaughter.

The much-ballyhooed wonders of modern anti-HIV drugs never panned out for Rodriguez, who had to stop her regimen of combination therapy soon after starting.

"I couldn't tolerate the medications," she said. "The ones I tried all made me so sick. I'd rather live a shorter life than take the meds and be sick all the time."

Rodriguez, a patient advocate at an HIV-AIDS facility run by Cook County Hospital and Rush-Presbyterian-St. Luke's Medical Center, has endured a steady decline from the disease.

"I had low platelets at one point, and so they had to remove my spleen. First, I had a bone marrow procedure. They don't put you to sleep. They went in through my back, and rammed this tube in, and then they started scraping. I could hear it. The pain was horrible. I screamed my bloody lungs out. I ripped up the pillow.

"This was freaky--I was told that I could survive without my spleen for anywhere from three to five years. I'm going on five years now, and I have noticed that I'm deteriorating, especially in the last two years. I've lost 30 or 40 pounds. I get a lot of colds, and it's taking me longer to get rid of them. Lately I've been really, really tired. I get nauseous, and sometimes I hardly eat for days. I have [nerve damage], too, and fevers."

Yet Rodriguez said she is facing her failing health with calm.

"It's like a realization that's coming to a head. It's not that I was in any kind of denial before. I've seen so much illness and death with other HIV-positive people that I have always thought, `When is this going to happen to me?' I guess now it's happening. . . . I'm taking good care of myself. But the reality is that there is no cure, and eventually you will succumb. That's what I've come to. It's starting to happen. It's OK."

Kenny Bell, 45, St. Louis

Bell found out he was infected in 1993 when he tried to donate blood. He believes he contracted HIV from a former girlfriend who was an injection drug user. He is a Navy veteran and former firefighter and lives with his fifth wife, who is also HIV-positive. He lost his fourth wife to AIDS.

Since he tested positive, he has attempted suicide 23 times.

"I have hope now," he said. "I'm very spiritual.

Self-destruction is just not my thing, I guess. I am living longer, and helping other folks live with it too."

"And you can live with it. I'm not going to say it's all peaches and cream. . . . I was a firefighter for eight years. I couldn't bring myself to tell those guys; they wouldn't understand.

"I talk to kids at high schools, through the Red Cross, and sometimes, if I'm in the park and I see a bunch of young guys around, I try to explain to them, `Hey, you're out here, if you're hitting Sally, Sue and Betty, [use a condom]. Don't matter, don't worry about the feeling, cause you wouldn't want to feel what I feel. . . . You don't want to live a life that's about taking medicine, some of which makes you feel awful.'"

Tony McKee, 29, and Endra Richardson, 29, Gary, Ind.

AIDS wasn't discussed much in Gary's relatively small gay and lesbian community. One day in 1999, McKee's knee swelled up, from what turned out to be a rare form of bacterial arthritis.

"I got admitted to the hospital, and I gave them consent to test for everything. I was hoping that it wasn't HIV, but I kinda knew. Two days after I was in there, they told me."

McKee gave Richardson the news the next day. "I was scared I might have it, and angry at myself because I could have protected myself," Richardson said. It was several months before he could bring himself to take an HIV test, which turned out positive.

When Richardson finally told McKee the news, McKee was devastated. "I felt guilty," McKee said.

The disease has changed their relationship, in some ways for the better.

"We actually made a pact with each other," McKee said. "We said no matter what we go through, we'll talk it out. Even if we don't end up staying together, and we do break up, we'll still be together--we'll be there for each other. So no matter what, we will be at each other's side."

"It was our seventh anniversary in February," Richardson said. "We might try to get married over the summer."

Raymond Rodriguez, 56, Chicago

For years, nothing could bring Raymond Rodriguez to kick his heroin and cocaine habit--not even the HIV diagnosis he received in 1986. But in 1994, after a jail term for theft, Rodriguez got clean at St. Leonard's House, a halfway house for men leaving prison. Now a staff member at the house, Rodriguez teaches residents about sobriety and HIV and works for a West Side needle exchange program.

"I don't particularly want to give you something to get high with, but it's a prevention thing. [They're] gonna get high anyhow.

"You see 18-year-olds, 19-year-old kids, beautiful girls, getting high. . . . And these are kids from the suburbs. Some of them look OK, some of them look filthy, and they're all driving cars. I ask them, why not baseball, why not hockey, football? The gym? What is this? Is it the high? It can't be the high, because at one time it was the high, but now it's not a plaything. You're freezing your butt off out there."

Debbie Mata, 20, Chicago

A first-generation Mexican-American who lives in Pilsen, Mata learned she was HIV-positive at age 19.

"I have only slept with one person. What are the chances? Ya know, first time, first everything. He was seven years older than me, so he lived his life, ya know, he's done whatever.

He's slept with a lot of women, he's done drugs, but no needles that I know of.

"The first thing that went through my mind, well I got rid of my toothbrush. I got rid of my razor that I left in the shower, I got rid of everything. And I bought new stuff and put them away so my little sister or mother wouldn't have contact. I didn't tell my mother, and four, five months later I still couldn't. But . . . my family took it pretty well. At first they were in shock. They all look out for me and they don't judge me. We are real cautious about stuff, like the menstrual cycle and everything else.

"I'm not going to let the virus take over my life. I'm only 20; why should I let the virus bring me down? I want to be a psychiatrist.

"My family, we do not really say I love you. But when they found out I was HIV-positive, they kept telling me, `I love you.' Everyone kept saying it: `I love you no matter what happens.' I was like, `OK, stop it already, you're driving me crazy.' It's a good thing, but it's also a bad thing, because why does something bad have to happen for people to be nice?"

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