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25 Years of AIDS: For Some, Disease is a Catalyst for Positive Change.

Posted on: Monday, 5 June 2006, 12:01 CDT

By Don Mayhew, The Fresno Bee, Calif.

Jun. 5--Other Stories

* AIDS through the years

She knows it sounds a little nuts, but Stephanie Williams insists that getting AIDS has been a positive thing in her life.

Williams, who had struggled for months with health problems, was diagnosed in 2000 while she was hospitalized with pneumonia. The mother of three lay in her hospital bed, taking stock of her life and wondering how she'd become infected.

AIDS was a catalyst for change in her life. She divorced her husband and moved from the Bay Area to Fresno. She began taking medication that improved her health while raising her youngest son, who's now 11.

"I'm probably the happiest I've ever been in my life," she says.

Today is widely recognized as the 25th anniversary of the AIDS epidemic. On June 5, 1981, the Centers for Disease Control and Prevention reported its first description of the syndrome.

Clearly, not everyone has Williams' upbeat attitude about living with AIDS. But during the past quarter-century, society's beliefs and expectations about the disease have changed dramatically.

AIDS once was considered nothing less than a death sentence. People now regard it as a chronic condition that in many cases can be managed with medication. Williams takes five pills a day -- one in the morning, four at night. They cost $1,500 a month, all but $9 covered by Medicare.

Had she contracted the HIV virus, which causes AIDS, years earlier, she might not have lived long enough to turn her life around. But in 1996, the antiretroviral therapy commonly called the AIDS cocktail was introduced. Knowing that there were other patients out there who'd survived gave her hope.

Unlike many people, she refused to be ashamed of her status.

"This was one area where I decided, when I found out, secrets are not good," she says. "I don't walk up to people in the grocery store and say, 'I have AIDS.' But I've always been a pretty open person."

While there is no cure, activists and patients say, having medication to manage AIDS has lessened fears and increased sympathy among the general population. It's been a gradual shift, but Magic Johnson's public admission in 1991 that he was infected had a big impact on the way people thought about it.

Ostracism still exists, but those with the disease aren't shunned as often as they once were.

Cynthia Karraker, a longtime Fresno activist whose husband died in 1985 because of complications from AIDS, says "so much has radically changed." She remembers trays of food being slipped under the door of her husband's hospital room. The staff was too afraid to enter.

"Back then, I'm not kidding, it would be nothing that there would be a death a week, two deaths a week, even in Fresno," she says.

The virus has become so much less lethal that Karraker and others fear that people don't take it seriously enough. In particular, teenage students can be blase about the dangers.

"They think now it's OK, because you can take some pills, and you'll be fine," Karraker says. "The sad thing is, those medications can be so hard on the people taking them."

Wayne Christianson, 48, of Fresno says he's had the virus for 25 years, the result of a needle prick while caring for a friend. He says it's no walk in the park.

"I feel like I have the flu 24 hours a day, seven days a week -- and those are good days," he says. Medications he has taken the past decade have helped. But there are days "you spend hanging around the toilet. You're wiped out."

Daniel Mendoza, 30, was diagnosed HIV-positive in 1998. His health deteriorated during 2002, when he also was diagnosed with Hepatitis C and cancer.

He recovered and now works as the coordinator for the Red Ribbon AIDS Project at Cornerstone Church. But the emotional and physical toll of that year haunts him today.

"I celebrated my Thanksgiving that year and my Christmas like it was my last," he says. "It hurt. My mom moved in with me, because she didn't want me to be alone, and I said, 'Mom, I don't know how long I have.'"

Though he got better, Mendoza says, a typical day remains a challenge. He fights nausea in the morning. He must avoid dark sodas and greasy food, limiting his diet.

"Enchiladas -- I love enchiladas," he says. "But I get very sick and nauseous because of the grease, the cheese."

Then there are days "I completely shut down," he says. "I'm in pain, and it comes and goes."

It was a couple of years after her diagnosis before Williams was able to return to work as a bookkeeper, and even then, only part time. Despite her optimism, she admits that AIDS is tough to live with.

"You always feel like there's this shadow hanging over you," she says. "If you get sick with a cold, it can turn into pneumonia, and that can be devastating."

Christianson concurs: "Once you are HIV-positive, you do not lead a normal life ever again. You have to watch what you eat. You have to watch everything that goes into your system.

"A simple cold could kill me."

Which is why Karraker is disappointed that, in her view, efforts to educate teenagers have waned.

"Shame on us for letting HIV to get as quiet as it's getting," she says. "Younger people are thinking it's just not the boogeyman it used to be."

She recently spoke to an HIV-positive man who no longer had a trace of the virus in his body. He acted as if he'd been cured.

She told him, "That doesn't mean you are HIV-negative. What that means is -- yahoo! -- your system's working. But you can still pass it on. That's a little something that sometimes people tend to overlook."

It isn't always a popular notion, but Williams says she tells people there are few AIDS victims -- apart from children born to HIV-positive mothers.

Most others "made a choice," she says. "Whether you're a man and a man or a man and a woman, you're making a choice to sleep with someone and not protect yourself. If you're using drugs, you're making the choice to use needles.

"HIV does not care what color you are. It doesn't care what religion you are. It doesn't care about your economic status. It doesn't matter."

Looking ahead 25 years, patients and activists hope first for a cure. But they also would like to see society's attitude continue to evolve.

Mendoza says it's hard to live with AIDS. It's even harder when you're alone. Having people stand alongside to offer support makes a world of difference.

Karraker says there remains a knee-jerk reaction among people who learn someone has AIDS: "Instantly, people go, 'How'd you get it?' When it's cancer, people don't say, 'How'd you get it?'"

Like Williams, she looks at AIDS as a gift in her life, despite the hardships.

"I've been able to share such intimacy with people," she says. "It's the gift of service, when the acts of giving and receiving melt into one act of love."

The reporter can be reached at dmayhew@fresnobee.com or (559) 441-6322.

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Copyright (c) 2006, The Fresno Bee, Calif.

Distributed by Knight Ridder/Tribune Business News.

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Source: The Fresno Bee

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