Simply Rob: Advocate and Artist, a Man of Words Uses Them to Spread Truth
All the negative HIV test results Rob Vassilarakis kept getting made him think he was having safe enough sex. "I was wrong," he says. In 1993, at age 22, he tested positive for HIV.
"When I was 17, I was disowned for being gay after my mother read some of my journal entries. I was forced to leave my mama's-boy existence in the suburbs of Long Island. I fled to New York City with my newly found freedom and found work in night clubs like the Sound Factory, the Tunnel, and Roxy. I used sex as a way to cope and escape my troubles. I was lonely, missing home, and welcomed any and all kinds of sexual attention as a substitute for love.
"I started using sex as a way to negotiate, to connect, to feel wanted and desired, to find acceptance, and as a means to an end. I was receiving a lot of attention, sometimes to the point where it would get overwhelming, but if people were willing to dish it out, I was more than happy to take it. I never knew that the time would come (like with my own family) when they would snatch it back and throw me away. It wasn't love, but for the moment, I reveled in it.
"I had met an older gentleman who spent a lot of time mentoring me after I was thrown out of my mom's house. He knew the circumstances of my life and understood that as green as I was, I might be easily led astray. He was more of a father to me than anyone else I'd known. He also had advanced AIDS. I knew other people who had died of AIDS, but this was the first time I saw someone, who seemed relatively healthy when I met him, deteriorate over three years and die. I watched him go from healthy to dementia, tubes everywhere, diapers ...
"I was traumatized by that. I tried to reach out to my mother, who kept referring to him as a thing -- 'poor thing,' she'd say -- as if this is where you end up if you live the gay 'lifestyle,' like the plague that's referred to in Revelations. He died in March of 1993 and I tested positive that summer. I think I had an underlying self-destructive element that stemmed from loss, rejection, and internalized homophobia. In retrospect, I feel my testing positive for HIV was a self-fulfilling prophecy."
Nineteen years after his HIV diagnosis, Vassilarakis is a healthy guy -- a marathoner, in fact. He is a full-time HIV outreach worker and a full-hearted spoken-word artist. His life today is a long, hazardous road from where he started in those matter-of-factly hopeful weeks after his diagnosis and the life-threatening years that followed.
"Initially, after learning about my status, I made a largely successful attempt to take back my life and live a healthier lifestyle. I imagined I would live until 2000 and I intended to live each day as if it were my last, enjoying them to the fullest. I didn't think I'd live to see the year 2001."
"I wasn't prepared for all the stigma and rejection associated with disclosure. For someone whose identity and self-worth was so dependent upon being sexually desired, the rejection was devastating. I went into the closet about my status. This made me feel horrible about myself when I would engage in sex but not as bad as being rejected for having HIV.
"I had already begun to experiment with drugs, but now they made it easier to hook up without disclosing. Eventually, I found myself caught in the grips of a crystal meth addiction for many years. I unraveled in the intensity of the drug-driven sex and ended up a homeless, strung-out, intravenous crystal meth addict with little more than my life and the clothes on my back.
"In October, 2006, with few options and death breathing down my neck, I checked into a rehab program within a Pentecostal church in the South Bronx. I made the mistake of disclosing my sexual orientation and the pastors regularly made an example of me during Wednesday and Sunday services, asking God to have mercy on those suffering from homosexuality and quoting [so-called] anti-gay scriptures in the Bible. After a month of judgment and scrutiny, I was back on the street again.
"I walked almost 50 blocks to the opposite side of the Bronx to a friend's apartment, hoping he would let me in to use his computer. I Googled 'drug treatment homeless NYC' and a list of places came up. I closed my eyes, put my finger on the screen and made the call to the one on which my finger had landed, a six- to- nine-month inpatient program in Harlem. It was a step up from a homeless shelter or a minimum-security correctional facility.
"I stayed there for a year with hundreds of other residents who had either been released to the facility as a condition of their parole, as an alternative to incarceration, or who, like me, had walked in homeless off the street. I never disclosed my sexual orientation or HIV status out of concern for my safety and well-being."
During the year he spent in drug treatment, Vassilarakis made his way to Harlem United, a nearby HIV/AIDS support center without which, he says, "I don't know if I would have made it through." Group support allowed Vassilarakis to start processing "gay," "HIV-positive," and "addict" in a safe place with others who were working through the same issues of identity. Today, he's an outreach worker at Harlem United, helping others trying to make it through.
"To date, I am four years free of my crystal meth addiction. In 2010 I took on the challenge of running 26.2 miles in the NYC Marathon to benefit Harlem United. I made this decision for two reasons. One was to affirm life 19 years after my HIV diagnosis and my battle with crystal meth addiction. The other was to give back to the agency that has provided, and continues to provide, me with support.
"Preparing for and running a marathon has been such a metaphor for my life. Challenging and even painful at times, but in the end, I emerge victorious and all the stronger because of it.
"I am totally out about my HIV status. I have done much work to get to this place of acceptance and my status is not something that can be used as a weapon against me, nor does it define me. It is, however, an aspect of my identity and I wear it proudly, like a badge of honor."
The Treatment Issue
Like everybody living with HIV/AIDS, Vassilarakis has to sort through HIV treatment decisions and how best to take care of himself and stay healthy. Like many, some parts of this he finds easier than others.
"I've yet to begin my ARV regimen. I still struggle with this 19 years after my diagnosis. My CD4 count hovers in the mid 600s to mid 700s while my viral load maintains around or below 3,500. My primary care provider and I have the meds talk frequently enough, but I will hold off for now. In the meantime, I keep a positive outlook and live the healthiest lifestyle I possibly can.
"Even early on, despite how flaky and irresponsible I was in other areas of my life, I was always pretty good about remaining engaged in care and keeping my finger on the pulse of what my HIV was doing. The doctor who tested me subscribed to the 'hit early, hit hard' belief about starting treatment. Every time I went to see him he made a strong case as to why I should start my meds. I was hesitant to comply because I knew I was too flaky, scattered, and transient to be able to adhere to a regimen properly.
"I left his care and sought out a doctor who supported my decision to wait, given my circumstances at the time, that my CD4 counts were still up in the 900+ range and that my viral load was virtually non-existent. In retrospect, I am glad I listened to my gut. The medications that were considered cutting edge at the time were just not as sophisticated and way more toxic than what we have available today. I also had a difficult time remembering to take a multivitamin on a daily basis; I can't imagine how I would have done with meds where it was imperative that doses not be missed. Add the insanity of my active addiction and homelessness and I am sure that I'd be experiencing all sorts of complications and would have developed some kind of resistance to meds by now. Having said all that, I would have taken them if my labs had reflected that I needed to.
"I give a lot of consideration to what I put in my body by way of my diet. I am not vegan or vegetarian, but I do love to eat raw foods and I'm having a total love affair with my Breville juicer! I have also adopted a fitness lifestyle that goes beyond just lifting weights at the gym. I have run two NYC Marathons and several half marathons. I believe that diet and running keep my heart and my blood healthy."
Vassilarakis has been refused an apartment because he disclosed he had HIV to the owner, who feared her toddler would somehow be exposed to the virus. He knows the look of fear on a friend's face after sharing the same drinking glass. As an outreach worker, he has a front-row seat to the work that remains in the battle to overcome ignorance and fear. As Vassilarakis says, "We can never take for granted that people are aware, especially in our own community and social circles.
"I was once facilitating an HIV/AIDS 101 at a local community college in the Bronx and someone asked if it was true that soaking in a bath with bleach after possible HIV exposure due to unprotected sex would prevent infection. I asked if anyone present would like to answer and a few hands went up. The person I called on said 'No, soaking in a bath won't, but drinking some will.' I was floored.
"When my good friend, who had just joined me at an HIV/AIDS event where I was performing some poetry, freaked out that I had sipped from his cup, another friend who was there said, "Well, you can't really blame him." I felt gut-punched. Later, I put the experience into a poem I wrote called Infected/Affected that includes these lines:"
You don't select what family you're born into
But you do choose your friends
These days I pick mine wisely
I can say pretty confidently that those whom I love
Have as much love for me
Every once in a blue I am disappointed
When one refuses to drink from the same glass or bottle I have
Or pulls out the disposable paper plates for me
While everyone else eats from regular dishes and cutlery
So I wash my food down
With gulps of reality
And wonder where I fell short
What opportunities have I missed to educate my peeps
Then I cease the moment and teach
How does Rob Vassilarakis keep steady these days? Where does he find hope and strength? "There is power and freedom in prayer," he says simply. If the God of his prayers has shut some doors in his life, it seems clear Vassilarakis has his eyes on the open windows.
"I tried reaching out to my mother a few times, but she had become a religious fanatic and her sermons and crying on the phone would leave me feeling emotionally depleted, leading me to severe bouts of depression. I eventually had to make the decision to sever all ties with her without ever telling her about my HIV status.
"There is no rhyme or reason why I should be alive and as healthy as I am all of these years later except for and through God. Through prayer I maintain in conscious contact with the God of my understanding, not the one who was depicted for me in my youth. My relationship with Him is one that I continue to develop through prayer and meditation.
"For many years I rejected organized religion because I felt they rejected me. In turning my back on them, I also turned my back on God, but He was always there for me. Many crystal meth addicts don't make it back from where I've been. They have their physical and mental health irreversibly damaged, their cognitive or motor skills impaired, and those with compromised immune systems deplete them further, sometimes to the point of no return. I have been spared of all of that.
"All of my faculties have been restored. I am in the best shape of my life, despite all of those years that I abused and disrespected my body. This is one of countless examples of how God continues to work in my life.
"I don't say any of this to brag. I say it in acknowledgment and in acceptance that God has another plan for me. "
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