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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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