It has been a little over 40 years since the first cases of HIV were reported. Of course, back then, it didn’t have a name. I was diagnosed with HIV in 1995, and I really can’t believe that I am still alive today.
It was the summer of ’95. New York City was very hot, and it was a few months after my boyfriend had passed away from AIDS that I went for a test at a local clinic. I assumed that I was fine because I had never had any HIV-related illnesses, nor did I have any of the purple spots on my body that my boyfriend had (Kaposi sarcoma). I just felt that I needed to take an HIV test to ease my mind, to give me comfort, but it didn’t. The test result came back positive.
My boyfriend (Carlos) and I had always practiced safe sex. He was diagnosed in 1993, but it was 1994 that was his (and my) hardest year. He got sicker and sicker throughout the year (it was the year the Channel Tunnel officially opened and the year Jacqueline Kennedy Onassis passed away). Carlos’s illnesses started with Kaposi sarcoma, then his energy levels went way down and then he was hospitalized numerous times for various illnesses. I couldn’t even begin to count the exact number of days he was in the hospital. I spent New Year’s Eve 1994 by his bedside in the hospital, which was conveniently around the corner from our apartment in NYC’s Greenwich Village. Carlos would be dead three months later, dying on Academy Award night in March 1995. It was the night that Forrest Gump won Best Picture, a movie about a man with longevity, which was ironic because my boyfriend didn’t have any. Carlos was only 30 when he passed away, surrounded by me, a couple of friends and his home nurse.
When I got my diagnosis, I was in a state of shock. My body felt so heavy. Some days I just couldn’t move. I struggled to go to work and struggled even more to maintain contact with friends. It was even worse when I found out my CD4 count and viral load. I happened to accidentally take what I thought were antibiotic pills to ward off colds and flu because I had been traveling a lot that summer after Carlos died. (I took his ashes to his family in Venezuela, even though he was never very close to them.) Well, taking medication not prescribed to me was not the smartest thing to do. I ended up in the hospital with a bad reaction to the medication, and, unbeknownst to me, they did an HIV test. Even though I knew I was positive, I had never told my doctor. Anyway, when the results came back, I also found out my CD4 count was in the double digits, and my viral load was very high. If being HIV diagnosed shocked me, knowing that my numbers were so low and so bad was even worse. I asked my doctor how much time I had left. Of course, he didn’t know, but in my mind, I was already dead. With my numbers that bad and the lack of effective HIV medications at that time, I figured I would be dead in a year. But by some miracle, cocktail combination therapy became available. I have continued to take various combinations of drugs since then. Sure, I’ve had a few health scares—in 1999, I had a fever for two months, and no one could figure out what it was until, luckily, it quietly went away—but for the past 26 years, my health has been robust and HIV-illness free.
What made me survive HIV? The cocktail combination of HIV drugs have had something to do with it. But I also think that I want to continue living for Carlos and for all those friends (and two of my cousins) I lost in the 1980s and 1990s to the once deadly disease. HIV has not taken me, and I won’t let it.
What three adjectives best describe you?
Determined, positive, full of life.
What is your greatest achievement?
Being a successful businessman after almost giving everything up and waiting to die.
What is your greatest regret?
Not being able to spend more time with those people who succumbed to HIV at such a young age.
What keeps you up at night?
That we only live once—so make the most of it!
If you could change one thing about living with HIV, what would it be?
If I knew then what I know now, things for me now would be very different.
What is the best advice you ever received?
Live everyday like it is your last.
What person in the HIV community do you most admire?
I would have to say those people who spoke up early in the crisis, like Larry Kramer and Elizabeth Taylor. They helped to start the conversation!
What drives you to do what you do?
The determination to keep on living for those who left us years ago.
What is your motto?
“Live every day like it is your last.”
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My passport because I love to travel! I am so grateful to have lived as long as I have because I have been able to see places I never expected to visit (Hong Kong, Tokyo, all of Europe, Brazil).
If you could be any animal, what would you be? And why?
A giraffe because I am not that tall (5’5), and I would love to be as tall as a giraffe to be able to see over people’s heads at concerts!