April 16, 2013
"I'm doing damn good," says Ed Viera, Jr., who was diagnosed with HIV in 1987. "I exercise, I eat right, I sleep, I don't smoke, I don't drink, and I don't do drugs." That's a far cry from Ed's youth in the U.S. Marine Corps, where he became HIV positive through unprotected sex in the early 1980s. "Every time I had sex, alcohol was always involved," he recalls. It's those early experiences that led Ed to become a substance abuse counselor, and an advocacy leader in his community. Supportive friends and his commitments to work and to living healthily have helped Ed through the toughest times in his 25-plus years living with HIV -- and though the challenges have been many, Ed says: "I'm never going to stop living."
How did you find out you were positive?
I was tested at the clinic on the Lower East Side in New York City back in 1987.
What made you decide to get tested?
Most of my close friends were dropping like flies, you know, at a time when we didn't have the triple combination therapy yet. I was scared. It's just out of sheer fear that I had to go and get tested. I knew I was infected probably since 1983.
What is your sexual orientation?
I identify myself as bisexual.
What was your reaction when you found out you were positive?
I was frozen and terrified. What I immediately started thinking about was the closest funeral home. At that time I thought HIV was a death sentence.
How did you get through it?
I had too many goals still to accomplish. I just didn't want to give up. I wanted to live no matter what. My quality of my life wasn't that important to me, I just wanted to live.
What helped you get through it?
My closest friends. Actually my closest friends are also HIV positive -- the friends that I have now. Whenever I'm depressed, I call them and they're there for me and they see me through it.
To be honest, I'm not used to being HIV positive. I guess I haven't quite accepted it yet. I know it's real but in the meantime all I have is just the support of my friends.
Who was the first person you told that you were positive, and how did they react?
The first person I told was a male friend and we are still friends -- oh mercy, for like a thousand years. Really like 25 years. He's a college professor and we were having a relationship and the moment I was diagnosed I picked up the phone and I told him to go get tested and he did. He was negative, which was a relief for me because just the thought of having someone else's life in my hands. ... Thank goodness he is still negative. He protected himself.
Was he supportive of you at the time?
Oh, absolutely. He's been my rock ever since I was diagnosed.
When did you tell your family?
I waited about a year to tell them because to be honest, despite all the information out there, they are very ignorant. They're very ignorant people. I pretty much anticipated what their reactions were going to be. And to this day they're convinced that I'm a heroin user and I got HIV because I was sharing needles. They also look at AIDS still as a gay disease and they do not accept my sexual orientation.
I had tried to talk to them over the years, but they decided to shut the doors to me. So I finally got to the point when I realized that all they are going to do is hurt me, so there is no place for them in my life.
One time, my mother actually told me that God was punishing me and that I got what I deserved. That made me isolate myself from other people even more, because I internalized what she said. But after awhile, I just got tired of being imprisoned by HIV. I got out there and I said, "Fine, if my family doesn't accept me there are other families out there that I can connect with. I'll make my own family." And that's what I did, I just moved on. Sometimes in life you have to dig deep within yourself to see how strong you are. The rejection from my family was that test.
Did you ever get the opportunity to speak with the person who you suspect infected you?
No. I didn't get to talk to the person. I was infected when I was in the U.S. Marine Corps. I can pretty much pinpoint it. I was with a male prostitute in the Philippines and from that encounter I caught gonorrhea and I got it treated. But as the months went by, I started feeling funny. When I got to our main base in San Diego, back to camp, I was given a blood test, and I got a call later on that said there "something funny in your blood and I can't tell exactly what it is." You know, the Marine Corps is so homophobic in many ways -- they didn't ask, I didn't tell. Back then, that was his way of telling me that it could be this "gay disease that was going around."
But unfortunately when I went back to the Philippines I couldn't find the man to disclose or say anything. At that time also, I would be drinking so much I just wouldn't recognize him, to tell you the truth.
Shifting gears, how do you think that HIV/AIDS is perceived in your community now?
There's an increased level of acceptance right now, but in my experience here in East Harlem people are not that comfortable with it. They might tell you that. "Yes, I know so-and-so is positive and I'm OK with it," but then I look at the faces that they make and their body language and I can tell they're uncomfortable with it.
The catharsis that surrounded HIV/AIDS until the advent of the triple combination therapy in 1996 has subsided as people have become better educated and realized that it's now a chronic manageable disease. Yet the stigma, ignorance, and discrimination are still around as well, albeit in a veiled form. Having won a few battles doesn't mean the war is over; and we shouldn't become complacent just because the disease is no longer considered a death sentence by most people.
If you had one message for the Hispanic community in terms of HIV, what would it be?
Know your status and practice safer sex even if you're negative.
I now want to talk about disclosing. What advice would you give to others about disclosing their status?
If the desire to engage in sex is mutual, and you're dealing with a trustworthy individual whom you've known for a while, the responsible thing to do is to carefully disclose. As for everyone else, it's none of their business. There's no need to go around volunteering information that can be used against you, even by people who claim to be your friends. Unless, perhaps, you're trying to take advantage of them through emotional blackmail. That's outright immoral.
In your own dating life, what have some of the reactions been from men and women when you have disclosed your status to them?
Several years ago, when I was a serial monogamist looking for love in all the wrong places, I took my chances with disclosure. Some people were supportive and agreed to play it safe. Others expected -- if not demanded -- honesty, but once I gave it they didn't know what to do with it. A few women got misty eyed, a couple of men almost dropped their dentures in disbelief and had no clue how to continue the conversation. I made it easy for them by leaving the scene. As a self-respecting man, I'm way past the point of making down-payments for other people's acceptance.
At this point when you're dating somebody, when do you usually disclose to them?
I try to develop a loose friendship just to get to know each other, with no sexual expectations at first, because I know that disclosure will be right around the corner. This has gotten quite tiresome. Nowadays I have straight male friends who, even though they sense there's something different about me, are so secure in their masculinity that sex between us is never going to be an option. That's a relief. If the individual, however, is gay or bisexual and the attraction is mutual, the best way to show I care is to disclose. I've built some long-lasting friendships this way.
Have you found love since you tested positive?
I thought I did. The problem has always been that deep inside the other individual wants a homosexual relationship along heterosexual lines. I couldn't deal with being accused of sleeping with women, the hissy jealousy fits, and the Spanish TV melodrama complete with police intervention in the middle of the night.
Maybe at the age of 53 I'm subconsciously looking for a custom-fit in an off-the-rack world. But I'm OK with that because I'm alone by choice.
In addition, ever since I was a child I found safety in solitude and pleasure in not having to explain myself to anyone. There's nothing better than coming home late at night after working a double shift and having no one nag and yap about your whereabouts.
Can you tell me about your work on the HIV Planning Council and your substance abuse counseling training? When did you get involved with that?
The two of them happened at the same time in September 2007. The mayor appointed me on the HIV Planning Council and when I received the appointment via mail I almost passed out. [Laughs] You're appointed by the mayor for a term of two years, not to exceed four years. Actually being appointed to the planning council just confirmed that what I wanted to do was a real, great thing. That also gave me the strength to get out there and try to educate people and see if I could do something to stem the tide of HIV infection.
As far as the substance abuse counseling training -- whenever you're talking about HIV and AIDS, substance abuse seems to go hand-in-hand. Also, when you have HIV and substance abuse there is also homelessness trailing not far behind. To help the HIV/AIDS community and to help myself also, I started training to become a CASAC (Certified Alcohol and Substance Abuse Counselor) at the same time I was appointed to the HIV Planning Council.
My work with the NYC Health and Human Services Planning Council ended in 2010. At the end of last year, I took a break from substance abuse counseling to pursue a master's degree in public administration at Metropolitan College of New York. Tired of being in the trenches and having so little to show for it, I went for something that helped me acquire transferrable skills. With this degree I'll be able to command a higher salary, relocate if necessary, and have the opportunity to call the shots instead of having someone else control my life and my health. I want to be in charge for a change.
Has your relationship with your family changed at all in recent years?
Although shunned by the family for years, my oldest sister Ivette and brother Victor always tried to stay in touch. In 2009 I bumped into Vic in my Kingsbridge neighborhood. My health wasn't good, so I gave him a set of keys and asked him to come check up on me every now and then. My apartment was a mess, as I was going through bouts of severe depression. One day, as I returned to my apartment from a CASAC internship in Queens; my sister Ivette came out of a car with Vic. To my surprise, they had decorated the entire apartment, complete with new bed, shower curtain, and many other furnishings.
A few months later my mother visited; but I kept my distance as I still harbored deep resentment towards her. Little by little I've been finding a way to forgive her -- and myself; otherwise I won't be able to move forward and finally heal from all the pain and venom I've been carrying for so long. In 2011, at Ivette's insistence, I went to Mom's 74th birthday party. Didn't stay long.
This year I had a breakthrough. At Venice Restaurant, I was the first to hold my mother in a long embrace and wish her a happy 76th. Things are looking up.
That's wonderful! What would you say is the most important thing that HIV has taught you?
Before HIV, all I did with condoms was fill them up with air, tie them up and throw them. They were insignificant. Now I've realized that I could have protected myself from it. I didn't think. I was just reckless and stupid and a drunk, to be honest with you. Every time I had sex, alcohol was always involved. Which is also one of the reasons that I'm a substance abuse counselor.
Basically, HIV has taught me how to be a better man and how to care about other people.
What would you say is the hardest thing about living with HIV?
Even though I work out, try to eat right, stick to my regimen, and have constructive things to fill up most of my time, it's a debilitating disease that slowly gnaws at you. Sometimes my bones hurt and I feel as if poisoned. Erectile dysfunction has come with the territory, and being over 50 makes everything even more difficult. But surrendering to the disease is definitely not an option. It might eventually claim me, but not without a fight.
Are you now currently on treatment for HIV?
Yes I am. I have been since 1998. Ever since I was diagnosed I refused treatment because a bunch of my friends who were on AZT [Retrovir, zidovudine] were dropping like flies, There were a lot of rumors that AZT was killing people, so I said, "No, I'm not going to go and get treatment, I'm not going to do it." But almost 10 years later, I started treatment.
By that time, medication was different. They had the triple combination therapy, which I'm comfortable with. Now, I'm on a once-a-day regimen: Edurant [rilpivirine], Epzicom [abacavir/3TC, Kivexa], Reyataz [atazanavir] and Norvir [ritonavir]. Add to that multivitamins, Dapsone [avlosulfon] to prevent PCP [Pneumocystis pneumonia], and a baby aspirin.
Your CD4 count is a little bit low. Do you know why?
Some years ago my CD4 count was around 320. Then a graveyard shift at a residential treatment facility in Queens in 2011 plus another bout with PCP last December dropped the count to a little over 100. Today it's back up to 239. That's normal for me.
What's the highest your CD4 count has ever been?
No higher than 350. But I don't worry about the CD4 count as much as other people I know. It's the CD8 count that matters the most to me. Plus the best thing is that after 25-plus years of being positive I'm haven't developed a resistance to any medication.
Do you have particular things you do to remember to take your medications?
Not anymore. Even though I'm a full-time student, I still wake up between 4 and 4:30 a.m., walk to the kitchen, pop my once-a-day meds, and try to go back to sleep for another hour or two. If that doesn't work, I go to the nearest Planet Fitness or fix a full breakfast and read something interesting like the reign-by-reign Chronicle of Russian Tsars, or catch up with the endless homework.
Overall, how is your treatment working? Any side effects?
I started the current regimen last fall, and the nasty side effects don't seem to go away. One moment I'm losing my balance; then I'm nauseous or running to the toilet every half hour. One day I look like I've been tanning in Tahiti; the next day ashen and dehydrated. The toxicity gets to be too much sometimes.
The best regimen I've been on was Sustiva [efavirenz, Stocrin], which helped me become undetectable in less than two months. But the side effects proved unmanageable. One night I got up to go to the bathroom and ended up on the corner of Prospect and 149th Street. Half-naked and sleepwalking through the streets in 13-degree weather. The thin membrane between reality and fantasy became blurred; as if someone had gone into the filing cabinets of my brain and rearranged all the folders. I didn't know what was real or not. Almost got misdiagnosed with paranoid schizophrenia.
How did you prepare for starting treatment back in 1998?
I remember telling myself, "OK, it's time to go get treatment. Just because your friends died doesn't mean you have to. Let's go and start treatment."
In the beginning, they had me on Crixivan [indinavir] and it was scary for me. It was so toxic and back then you had to take it on an empty stomach. At that time the treatment was just worse than the diagnosis. I couldn't hold food down with Crixivan. I lost a lot of weight. I was around 120 pounds. Thirty pounds lighter than my actual weight. People kept asking me if I was on drugs because I looked so drawn with the sunken cheeks -- I looked like a crackhead. Yes, I was on drugs, but not the drugs that people thought I was on.
So after that experience, I just stopped the treatment because I just felt the treatment was killing me. And I stayed off treatment for year and a half and then I decided to go back. Every time I heard about new medications coming on the market, that were easier to tolerate, I got more tempted to start back up again. So in 2000, I started taking treatment again.
Having lived with HIV for almost 30 years, how do you commit so strongly to doing HIV work every day?
At 53, it's no longer about commitment or the high idealism that compelled me to join the fight against HIV/AIDS. It's about having the discipline, passion and compassion to do the right thing, and knowing that my efforts are actually making a difference.
Finally, what advice would you give to somebody who was recently diagnosed?
My advice is simple: Develop a support network. It's really important to have one. Also think about having a second and third family. Look at me. In my case my family turned their backs on me for years and closed all the doors. I had to develop other networks by going to HIV support groups. Go to a library, just talk to people, get out there and stop isolating yourself from other people.
This transcript has been edited for clarity.
This interview originally took place in 2008, and has been revised and updated. Additional reporting was provided by Kellee Terrell and Olivia Ford.