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This Positive Life: An Interview With Evelyn Hernandez

September 15, 2011

Lee en Español
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Did you immediately have side effects?

Well, interestingly enough, when I started taking AZT, my T cells increased from 45 to like 335 -- something to that effect. I thought, "Wow, this is just in a matter of a couple of months." I was shocked. But then my T cells immediately just dropped after that.

So your initial T-cell count was 45?

Was 45.

And what was your husband's?

His was 236 I believe.


But he had more symptoms?


Wow. So strange.

It is. At the time, being naive and not knowing as much about the disease as I do now, I thought that, because I had less T cells, I may have given my husband the illness. But since then, I learned that a lot of women, when they're infected, they lose T cells a lot quicker than men do. But I took the blame personally for a while.

What about your circle of friends? How many people did you tell?

I had a couple of really close friends that I talked to. I worked for the Speaker of the New York State Assembly, Sheldon Silver. I immediately spoke to my supervisor, and shared with him, and they all understood. The work that we did for the Assembly was passing legislation that provided services to individuals that were living with HIV and AIDS. I think that being in that role, in that position, and working for the Speaker at that time, was a blessing in disguise. They were all extremely understanding.

So you didn't suffer any discrimination?


Did you ever think that you would go public as you have?

I never thought that in a million years. I moved from New York to California -- I have two brothers in Los Angeles. My health was not well at the time, and I thought, well, I really wanted to experience as much life as possible.

We should back up. What happened that year that made you move?

Prior to my move, I came down with PCP [Pneumocystis pneumonia]. I was very, very ill. I managed to get through that. I was hospitalized for over a week. Then I was sent home and I had a nurse that would come over every day. I was hooked up to an IV. Both my parents drove out from New York City and they spent time with me, taking care of me.

Where was your husband at this point?

My husband passed away eight months after our wedding day.

What did Greg die from?

He died from encephalopathy.

He had a grand mal seizure at home. We had to rush him to the emergency room. We had to call the ambulance and they took him in. He really never quite got out of that. He was extremely disoriented. He couldn't do the work that he was used to, or accustomed to doing, which was his construction work. So, at the time, I was head of the household, living with AIDS at this point, going to work every day, and taking care of my husband when I would come home. If he was in the hospital -- because he was hospitalized at least three times -- I would rush there after work. And working for the Speaker, you work very long hours; it's a very stressful job. But my husband was in the critical care unit and in a comatose state, so I just needed to be there with him.

Were his parents involved?

Yes, everyone was involved. His parents were extremely supportive and his sisters and his brother. They were also extremely saddened and heartbroken.

So where were you when you were dealing with PCP and all alone?

After he died, almost a year to the day of his death, I was planning a gathering for his friends to commemorate Greg and celebrate his life. And as I was doing the planning, I wasn't feeling well. I was extremely fatigued. I was exhausted. I was short of breath. I kept coughing. I didn't know what was going on, but I kept pushing. Pushing myself to the point where I ended up in the hospital. He had died June 5 of 1994 and I came down with PCP June 3 of 1995.

Several years after that, I moved to California and decided to experience as much of life as I possibly could.

Had you changed medications by then?

Oh, I changed medications constantly. I was the type of patient that would exhaust all types of medications that were available. A trial would come out and I would participate in a lottery. I was accepted into a couple of lotteries that they had regarding some of the new meds that were coming out.

So you've always been proactive about your treatment?

I've always been. I think a lot of that has to do with my advocacy work, working for the Speaker, and growing up in the streets of New York City, in the Lower East Side. Living in the projects made you learn how to fight your way through certain situations. So, I think that's kind of in my blood, even today.

Tell me more about California.

My first stop was L.A., which to me was a bit stressful. I lived there for about two years. Then I decided to move out to the desert area -- the Palm Springs, Calif., area. That move really changed my life. I met someone who I had a lot in common with several years after my husband had passed away.

I had disclosed my illness to Steve. I figured there's one of two roads he can choose: Run and head for the hills, or be there by my side and support me. Steve chose to stick by my side. He's learned a lot about the illness. He's negative. He's been tested several times. Now we live together in beautiful Palm Springs, Calif. And he's been a huge support. I don't know how I would have made it without him. He's a genuinely special person. And I think that Greg, in his own special way, brought the two of us together.

How did you guys meet?

We met at Rosarito Beach in Mexico. I was living in L.A. at the time, and I went there with my brother and his friends. We went out to Rock and Roll Taco. I just wanted to have fun. I was dancing and then I couldn't find my brother; I'm like, "Where's my brother?"

And as I was looking around the dance floor, this very tall, handsome gentleman came up to me and asked me to dance. At first, I was going to say no, because I needed to just physically see where my brother was. But then I thought, he would never leave me, so we danced and then we danced some more. And we talked. And we exchanged phone numbers and it just so happened that he was staying at the same condominium complex where my brother and I were staying. So the next day, when I got up to walk the dog, I saw Steve taking his bike off the truck.

How long ago was that?

This was back in 1999.

So you've been together ever since. Wow.

Yeah. At first, we did the long distance thing. I worked for a nonprofit called Crystal Stairs; I was their public policy associate. So, on a weekly basis, I would travel a lot to Sacramento and Washington, D.C. It took a toll on me.

Steve would come out to Los Angeles and visit with me. I would drive down to Palm Springs. It just got to be too much. It got to the point where either we're going to be together, or we're going to end the relationship.

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