This Positive Life: Now Over 50, Ed Viera Reflects on HIV's Challenges and Lessons
April 16, 2013
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?
"Surrendering to the disease is definitely not an option. It might eventually claim me, but not without a fight."
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.
"[HIV work is] 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."
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.
Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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This article was provided by TheBody.com. It is a part of the publication This Positive Life.
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