One-on-One with Sylvia Vázquez-O'Shaughnessy

I chatted briefly with Sylvia Vázquez-O'Shaughnessy, facilitator for TPAN's support group for HIV positive women, following a recent Chicago HIV Services Planning meeting. Day and night, good health or bad, Sylvia's always there for her clients. She's a dynamo, a powerhouse, and sometimes a holy terror. In every sense of the word, Sylvia's a patient advocate. I managed to get Sylvia to sit still for a bit just as she was preparing to visit with her parents in Puerto Rico -- with her new husband Arthur -- for a well deserved rest.

On Treatment Activism

"I'm an activist," Sylvia proudly proclaims. "I love putting my foot up somebody's ass for someone else." When she's not busy with her full-time responsibilities as a program and support group coordinator with TPAN, Sylvia serves as a member of the HIV Positive Action Coalition (HIV-PAC) and on the HIV Services Planning Council. "This is HIV positive people working for other HIV people, representing and advocating for them."

"Sometimes I don't think I make sense. I don't think that people understand, because I get so frustrated, I just want to get it all out." Not one to bite her tongue, she maintains, "I'm not afraid to ask questions until I fully understand what the situation is. Wait a minute. Stop. I don't understand." Because of her sheer forcefulness, sometimes people get the wrong impression of Sylvia. "I think people hate me and people love me. I see it. The clients and people I work closely with appreciate the advocacy work I do. I just do what I love doing. Helping."

On HIV Stigma

Her advocacy work began in 1991. "I was really a big mouth, with picket signs and everything." However, she pulled back from HIV/AIDS activity in part because of the stigma attached to HIV and the toll it took on her previous marriage. "I was married to a man who didn't want everyone to know I was HIV positive. And he didn't want people to assume he was positive, because he wasn't," she states. "He was in the penitentiary . . . and in the penitentiary if you're HIV they outcast you. He didn't want to have to go through that. But when that marriage dissolved, I was back full force, doing what I like to do."

On Miseducation and Cultural Barriers to Understanding HIV

HIV became a permanent fixture in Sylvia's life around the end of 1983. Her first husband had been sick on and off for months. "I got tired and frustrated with him going in and out . . . and there was never a diagnosis. Well, it wasn't that there wasn't a diagnosis, it was the fact that he wasn't telling me. He had full blown AIDS."

She continues, "It wasn't that he didn't tell me. But I don't think he understood the doctors, because he spoke Spanish." Sylvia and her husband both understood English at the time, but didn't understand the seriousness of his illness.

"I had just had [my last child]," she explains, and her husband told her he had cancer. "Well, he did have cancer," she remembers. "He had Kaposi sarcoma." The doctor eventually pulled Sylvia to the side and advised her that her husband had Acquired Immune Deficiency Syndrome.

But for a young Latina, who at the time read at a third grade level, the explanation was meaningless. Sylvia adds, "She told me that gay men and intravenous drug users get it [AIDS]. And your husband is both . . . bisexual and an IV-drug user."

"I couldn't understand [when] she told me that I needed to get tested. I said, 'Why? I'm not gay. I don't use drugs.' I didn't understand how me having sex with my husband would make me ill, when he was the one shooting up drugs and was bisexual."

The ability to read is often taken for granted in HIV prevention campaigns, but Sylvia was basically illiterate until the age of 27. "Reading is still tough for me," she adds.

On Her Experience with Testing for HIV

"I was sitting down in the [city clinic]. I don't know if he was a nurse, counselor or a doctor. I don't know what the hell he was. He never introduced himself."

What she remembers distinctly were those three little words: "You have AIDS." She continues, "Wow, I got AIDS and my husband has this big thing -- Acquired Immune Deficiency Syndrome." Sylvia still hadn't made the connection between AIDS and Acquired Immune Deficiency Syndrome. Sylvia (and I) can chuckle about it today, but it wasn't funny to her some 16 years ago.

In a very serious tone she tells me the counselor said, "'You're gonna die. Do you know that?'" And near tears, Sylvia adds, "I nodded my head. I never opened my mouth to say a word. Then he asked if I had any questions. What the hell kind of questions was I going to ask? You'll telling me I'm gonna die. I don't know what the hell is going on. All I'm thinking about is my babies . . . in an orphanage. Then he said, 'Have a good day.' That was it."

"I got up, walked out the room, and closed the door behind me. My whole world collapsed."

On the Road to Self-Empowerment

Like many newly diagnosed individuals, Sylvia's path to self-empowerment was frightening, frustrating, and not without detours. First, she had to deal with having her infant tested for HIV. "I didn't want to hear that. But we did test him, and they told me he was positive." Once that bomb was dropped, Sylvia withdrew from all medical advice. As she explains, "I didn't need to go to the doctor anymore. I was gonna go home and take care of my baby."

When her child entered school, his condition was reported to his teacher, who told the principal, who informed the school nurse. The next thing Sylvia knew, a freaked out nurse was at her door. "She was telling me that [my child] chews on his pencil and there's saliva all over the place. And I looked at her and my daughter. It was like, 'What is her problem?' We already knew we couldn't get it [HIV] from saliva. We had some clue."

Sylvia finally found a doctor she felt comfortable with, and told him she had AIDS. This doctor helped her to understand how HIV was transmitted, but more importantly how to take care of herself and her children.

With great hesitation, Sylvia took her son back to the hospital for additional tests. "I didn't want to hear what I was going to hear again. So when we got his results and they told me he was negative, I said, 'No, no, no. You've got the wrong paper.'"

"That's when they explained to me about how a child is born with the mother's anti-bodies and then he builds his own immune system. And that's when I grew furious. And that's when I started to learn about this disease. And that's when I sat my kids down and said, 'I'll be damned. I'm gonna teach these people about this disease.' I told them that I was going to start talking about this disease and kids weren't going to want to play with them because their parents are gonna to say, 'No, they're the family with AIDS.'"

On Support Networks

"My kids gave me support, since they were little. Always. They said go mom. They were the only ones who could have stopped me from doing what I do. From that point on I became a sponge -- observing and learning." Sylvia has a solid support network -- her children, her husband, her family, and her sister, Enid Vázquez.

Sylvia maintains that she's "still learning a lot," and sometimes she gets scared. "A lot of things change [in regards to therapy], but a lot of things haven't [in taking care of yourself].

"Usually clients come to me with concerns about a bad interaction with someone. Or they tell me something that was told to them, which was totally inaccurate. What I say is that you have to ask questions. The only dumb question is the one you don't ask. If you feel that what someone is telling you is not right . . . then ask someone else. You have to take care of yourself."

On Women and HIV Treatment

"Women in particular . . . are raised to believe that the husband and children come first. My generation and before, the husband handles everything, the wife takes care of the kids. Everything comes before the woman's health. Doesn't matter if you're Asian, African-American or Caucasian . . . it's the same. Prevention and treatment messages go in one ear and out the other. Educating women is my primary concern."

"Women have a lot of strength, but don't get recognized for that . . . holding down a home, working and raising kids. We don't even get credit for that. I have to pay rent, clothe the kids and put food on the table. Because we don't take credit, because society doesn't really value the work of women, we don't see the value in it. I tell women, 'take care of yourself, stay strong, and speak up.'"

On Inner Peace

"I want people to see that I'm doing this because . . . I found God from within. It's really difficult to describe everything that has happened to me, everything I've been through . . . people think I'm crazy. But when I learned to love Sylvia unconditionally, and learned to accept myself as I am . . . I was able to give to others and love people for who they are. Women need to remember to concentrate on themselves, but that's difficult thing for a woman to do when she has other responsibilities. But we're fighters. We're survivors." Indeed.

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