When did it happen? I am not sure of
the exact date; perhaps I should check my records to make it exact? But, does
it really matters if the impact has been the same? We were in class together
when he first approached me. His name is Saúl Maravilla. I could have ignored
him and continue paying attention to class. But no; I listened to him. I let
him lure me with his ideas. I was an eager listener and the excitement of
something new got a hold of me. And without much hesitation I said yes. And
that is how C.A.L.O.R. came to my location.
C.A.LO.R. (Comprensión y Apoyo a
Latinos en Oposición al Retrovirus) came as a direct response to the lack of
culturally and linguistically appropriate services to Latinos impacted by HIV
in the first few years of the epidemic. A group of HIV+ individuals along with
committed community members came together to fill the vacuum that existed at
that time. At first, it was only a support group but over
the years it grew as a result of the expressed needs of the participants. At
that time, I had a for-profit business along with Omar N. López. We had a huge
loft around Division Street and Damen Avenue in Chicago with plenty of space
available, and so it was easy for us to say yes to the idea of having this
group meet at our location.
I remember the first group sessions I
attended. I was mostly lost, not having a clear understanding of what was
happening and of what impact this epidemic would have in our community. I
do remember there was not yet much talk about
HIV or about dying. Most of it was about needing
assistance to apply for Social Security, public aid, or some other type of
benefit. “Who can go with me? I need translation.” There was a general sense of
brotherhood, of everybody being together in the same situation. And everybody
seemed to understand except me, because I was not clear on what was happening.
Back in my hometown of Arecibo,
Puerto Rico, nobody I knew had HIV; nobody had died of complications of AIDS.
In retrospect, I can see it was already happening, just that nobody was talking
about it. There was the guy that died of encephalitis, but that through a
hospital worker we found out that it was “that new disease.” This was prior to
regulations that prohibited disclosure of health-care information; people with
access to medical records talked about it. As a young summer intern at the
Hospital Regional de Arecibo, I had access to medical records and found out
about my uncle’s battle with cancer way before anybody in the family knew about
it. But that is another story.
There was also the death of one of
the neighborhood guys who used drugs intravenously and his wife’s subsequent
illness. Nobody said it out loud, but everybody said they were “sick with that
new illness.” This was in 1986 and I moved to Chicago in 1987, and that was the
extent of my contact with HIV. Of course, Magic Johnson’s announcement came a
couple years later, but I was not a basketball fan, so it did not shock me as
it shocked the rest of the world. HIV was still not a reality in my mind.
It was that training, my very first
training about HIV. I think the training was at Stop AIDS Chicago. It was also
Saúl who pushed me to go to that training which was about women and HIV. Now,
that really shocked me. I learned about HIV and women specifically, about how
it impacted us, about the rising numbers of infections among women. That did
it. I was alarmed, sad and scared, but also determined to do something about
it. I was determined to continue learning and to dedicate myself to this
matter.
And so I did. With the help of
others, we created a skeleton volunteer structure to accompany people to
medical and social service-related appointments. We incorporated the
organization with the State of Illinois and began to look at opportunities for
funding. And most importantly, we kept our Saturday support groups going; this
is where our friends, our family came together to share their experiences, to
share their fears and frustrations about dealing with their new reality, to
give each other encouragement and support.
And I still did not know much. It
still had not impacted me personally…but not for much longer. My life was about
to change in ways that I had never imagined. The following months and years
were filled with many visits to hospitals, with helping dear friends with their
medications, with loss and visits to funeral homes. It was also filled,
alternatively, with the desire to do something different because I was not sure
I could continue coping with the frequent loss, and with the renewed desire to
continue doing more. That was 21 years ago…and here I still am, and there is
still much more to be done.
I will tell you about those early
years in my next blog. Meanwhile, share with me: how was your first experience
with HIV? How and why did you get involved?
I look forward to reading your experiences!
Rosa
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