Whirlwind Marlene Diaz tests the limits
"I feel like I'm living in dog years," says
Marlene Diaz, 35. "I just make believe each year is like a year in a
dog's life -- every one equals seven," she says, sitting amid stacks
of papers in her small two-bedroom apartment. The clutter, she says
apologetically, is the result of her work as an activist with the
HIV Law Project, Just Kids and ICW (International Community of Women
Living with HIV/AIDS), among others. Pert but pleasant, she has a
certain wariness that surfaces when she coolly talks about her HIV
status and its origins.
"I tested positive in 1992 when I was eight months' pregnant,"
says Diaz, who lives with her 5-year-old daughter, Margaretha, in
New York City's Chelsea neighborhood ("HIV Mecca," says Diaz, who
has lived in the same building since 1967). "I was planning on
breast-feeding, so I wanted to know if I was positive, because I had
been raped when I was two months' pregnant," she says
matter-of-factly. "I definitely had my share of intimacies, mostly
with women. There were maybe a handful of men, so I couldn't rule
that out. But my daughter's father was negative, and other people
that I hunted down were negative as well. So I think it's safe to
say that I probably got infected being raped for five hours. It's
high-risk sex,'' says Diaz, with a laugh. "Nobody's thinking safe
sex and you don't have much say in the matter." She pauses.
"Unfortunately, you don't have any say at all."
Our conversation is interrupted momentarily by Margaretha,
looking for her Beanie Babies. "I don't know where they are," Diaz
says to her daughter. "Look in the pockets of the blanket you made
for them." Without skipping a beat, she picks up where she left off.
Her mood shifts as she begins talking about her daughter. "They
tested her antibody positive at birth, but they also gave her a p24
antigen test two months later. Remember, this was five years ago,''
she says with the casual familiarity that comes from years of poring
over AIDS research. "No one counseled me about the test. If someone
had said to me, 'We're going to test Margaretha, and if that test is
positive, that means your kid is going to be positive forever,' I
would have said, 'I can't deal with that now.'
"It was rough." she continues. "My life went from finishing
college to being focused on my T-cell count. And the more I
stressed, the lower it got." Diaz leans forward. "I remember
watching TV and seeing an ad for cemetery plots -- pay-as-you-go.
I'm still paying off that stupid mausoleum." After about a year,
Diaz managed to channel her anger and depression into advocacy. Not
surprisingly, she became involved in programs for women and children
with HIV, and in outreach to the Latino community. She has testified
at congressional hearings on legislation that would mandate HIV
testing of newborns without the mother's consent -- something to
which Diaz is vehemently opposed, especially without the proper
prior counseling. "Imagine someone being tested without their
consent, by testing their child," she explains. "Without any
counseling, I would probably very briefly consider jumping out a
window -- with my kid."
Perhaps one can better understand Marlene Diaz's transition from
first-generation American daughter of a Puerto Rican father and a
very Catholic -- and "very critical" -- Peruvian mother by hearing
her describe her daily routine: "On a typical day, I'm up at 5:30 to
give Margaretha ddI so she has an appetite two hours later. She just
started kindergarten, so I have to pack her meds -- Viracept for the
afternoon, bottled water, whatever lunch is going to be. Sometimes,
if I know I'm going to be exhausted when I get home, I'll put on a
pot of rice, so I easily make something when we get home. Usually I
don't have time." By 7:45 she's out of the house.
After dropping her daughter off at school, Diaz heads to her job
at Beth Israel Hospital, where she does counseling for the Families
in Transition Project. She puts in about 20 hours a week there,
Mondays through Thursdays. "Fridays I need to keep open for medical
appointments," she says.
Once a month she must also help Margaretha through an IVIG
(intravenous immunoglobulin), an injection of sterile solution of
concentrated antibodies to prevent bacterial infections in children
who are immunocompromised.
Although Diaz trusts her doctor, "we don't see eye-to-eye on a
lot of things. Doctors seem to be very territorial, and I refuse to
be bullied," she says with characteristic resolve. "I think the
reason why my daughter's doing well is that I really believe in her
doctor, although we didn't agree on the IVIG. I didn't want to have
an IV pump in my apartment. There will be a time when we will need
one, but now is not the time. So every month I put on my boxing
gloves to go another round with the doctors.
"I've made it six years already, and that's a pretty old dog,"
Diaz says with a hearty laugh. "Maybe I can go back to human years
now."
To find out more about Marlene and Margaretha's health today
and in the coming months, check in on "What
This Means".
