As HIV-positive residents come to terms with the fact that they aren’t necessarily facing an early death from their disease, the Schenectady agency that has served them for 15 years is changing its focus as well.
Damien Center used to provide meals and a friendly ear. Now the goal is to provide life-affirming activities too.
“It’s important just to keep learning. As long as there are interests that keep you motivated, there’s the will to keep going,” said program manager Dan Butterworth, who took over the center in April.
He’s taking clients to the Christman Nature Preserve in Duanesburg and the New York City Ballet, to museums and parks — anywhere that might spark new interests.
In another indication of the changing perspective on what was once viewed as a death sentence, HIV-positive clients now gather to play bingo or watch movies.
Better medical care has also made it possible for infected women to give birth without passing on the disease. Now so many children come to Damien Center with their infected parents that the agency needs a volunteer to provide child care while the adults talk.
Only four children have been diagnosed with HIV in Schenectady County, but 362 adults were diagnosed here, according to Department of Health records. Of them, eight are teenagers and 10 are between age 20 and 24. The vast majority, 240, are between age 30 and 49, and that’s the group that most often shows up at the Damien Center. Most of them have been living with the virus for more than a decade and expect to live full lives if they keep taking their medication.
“It’s nothing like the hysteria of the ’80s,” Butterworth said. “The way medication and care are now with HIV, living with the disease is comparable to diabetes or MS. Lifespans are normal if you get care.”
The center used to simply help clients stay nourished.
“Most of Damien Center’s activities were focused just on meals,” Butterworth said. “One of the reasons we provide meals is nausea is one of the common side effects and so often people don’t eat because they don’t feel like it.”
But now, with medications far better than the hated and painful AZT regimen, clients want more.
“Maintaining the body, like with any chronic disease, is very important,” Butterworth said.
An entire room at the center is now set aside for massage, and Butterworth holds regular meetings on nutrition, medication, and insurance options.
But just because there are better medications doesn’t mean the battle has been won. Butterworth is deeply disturbed by the sudden growth in infections among young people. Those under age 24 are getting HIV at a faster rate than anyone else, and he thinks it’s because they don’t believe AIDS is a serious disease.
He wants to bring some of his younger clients to local high schools to talk to the students.
But even his own clients say they may not be able to convince young people that a chronic disease is scary enough to use condoms and stay away from dirty needles.
Constance Johnson, who comes to the Damien Center regularly with her HIV-positive mother, said she ignored her mother’s advice even though she grew up watching her mother struggle with the disease.
Her mother was infected when Johnson was 6. She saw her mother choke down daily medications, coping with oppressive side-effects. Above all else, Johnson says, she wanted to avoid the disease.
“I see what my mom goes through. I think it would break her heart,” she said.
But somehow, when she was 17, she had unprotected sex. For weeks afterward, she was terrified. She couldn’t bring herself to tell her mother. Sure, there was the possibility that she could be pregnant. But what she really feared was AIDS.
“I don’t know why I did it,” she said. “I was scared, more scared of getting the virus than being pregnant. It took me a long time to tell her … maybe a month.”
Her mother took her to get tested. There were two tests: one for HIV, one for pregnancy. One came back positive.
But it was OK. She was pregnant.
“Now I’m going to be careful,” she said, feeding her 8-month-old daughter Eniya.
Her mother had intended to be careful too. Mary Kleitzel had been married for years when she got HIV. The cause? Having sex with her husband.
Now Kleitzel says no one should trust any sexual partner, married or not.
“Don’t matter,” she said. “If they’re going to have a spouse, still use protection.”
But despite her own advice, she has two children born after her diagnosis. That may be difficult for outsiders to understand, but that’s one more reason why Kleitzel and Johnson enjoy the Damien Center.
There, clients can talk openly about the days in which they skipped the medication that gave them explosive diarrhea, or the times when they just couldn’t stick to the strict regimen that would be best for their health.
“They understand what you’re going through,” Kleitzel said.
Johnson added that clients understand she is living with the virus, even though she’s not infected.
“You don’t find nobody like that out there,” she said. “How could you talk to somebody about that? They don’t relate.”
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Categories: Schenectady County