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HIV/AIDS Blog Central

Pozitively Struggling

By Brandon Lacy Campos

September 15, 2010

Living with HIV is a constant fucking struggle. It's a struggle against yourself and the internal tapes associated with being positive. It is a struggle to deal with stigma perceived or otherwise. It is a struggle to master fear and fear of rejection. It is a struggle to just live your life like any other human being does or gets to do.

I have been trying to do some serious work integrating HIV and acceptance of it into who I am. Recently I taped a video interview talking about that process for TheBody.com. Since May, I have been writing for TheBody.com, and I have received some really amazing support and love from other poz folks in the world struggling with the same shit that I am attempting to deal with, and that has been truly a wonderful experience.

But, translating these thoughts, experiences, and feelings into daily actions is sometimes very hard to do.

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All of this is complicated by semi-attempts to try and venture back out into the world and enjoy the benefit of being in an open relationship, to make connections with people (sexual and otherwise), to enjoy those possibilities, and to navigate what it means to be a positive individual while doing so.

The paranoia and fear around situations, even ones in which there has been no responsibility to disclose, has me at a spiritual and mental tipping point.

Then, on top of all that, add to the mix that I am a recovering meth addict. One of the loveliest and most fun long term impacts of meth use is a syndrome called PAWS (Post-Acute Withdrawal Syndrome), which is basically the fun experience of having, from time to time, bouts of mild paranoia that can come on suddenly. This lovely by product of meth use can last for up to three years after use has stopped.

Hands down the only times that I have experienced PAWS has been when I have been worried about a failure to disclose (whether or not it was necessary to disclose) or some other circumstance where, to use a recent example, where I connected with someone, there wasn't a need to disclose, but he chose not to continue in communication.

Now, for most people, someone not calling you back after having a minor hook up with some heavy petting, would simply mean that it was a one night stand or dude decided after all that he wasn't interested. For me, my mind and spirit immediately jump to a place where he Googled my name, found my blogs, and is now waging a silent war against me for being HIV positive and not telling him. Even knowing when there has been absolutely no risk of transmission, I still end up in this place.

That is some fucked up shit.

And it really doesn't matter. I could hook up with a dude that never asks about my status, doesn't care, and has an entire collection of photos and video tapes of all the men that he has hooked up with and practiced unsafe sex, and I will still feel the responsibility of the world coming down on my shoulders for his choices and mine. I repeat HIS choices and mine.

I need to have my own conspiracy theory show. Because, really, this shit is better than anything on the Spike Channel or Lifetime.

So, being a Virgo and thinking logically, and also never wanting to go through another PAWS experience in my life (I can avoid PAWS experiences ... for the most part ... .I will never be able to avoid poz experiences ... that's just my reality), and knowing that most often my PAWS experiences are triggered by hook up situations or even just plain old dating situations where no one has lied to anyone about anything, but I don't know the other person's status, and they don't know mine ... I have come to the conclusion that the only way to avoid PAWS situations caused by a poz situation is to make a commitment to only date and/or hook up with other HIV positive guys from now on.

At this point in my journey into integrating my identity as an HIV positive man, I haven't found a way, yet, to bring up casually while negotiating a blow job from a hot guy at a party that I am HIV positive. And since not having found the strength or whatever it takes to disclose in a situation like that or any other random hook up moment, the best thing I can do is avoid them altogether until I can find a way to do so without having a complete and total breakdown.

And walking down the street sober and believing that there is a queer mafia out there watching your every move and judging you or somehow monitoring your computer usage or cloning your cell phone to read your text messages is not worth it. It just really isn't worth it. And, truly, I don't want to end up pushing a cart full of old cat bones up and down 10th Avenue talking to my invisible friend Buttons and singing the Star Spangled Banner every time a car alarm goes off.

Yes people, I am on medication. Zoloft is my bestest friend ever.

It doesn't really matter that these moments are rare. It doesn't matter that 99.8% of the time, I go about my life, eating, shitting, talking, praying, laughing, and loving. One single evening, like tonight, where the issues converge by a chance moment and grow into something so unwieldy, uncomfortable, and avoidable, is so not worth it.

Maybe six months or a year from now, I will have done enough internal work that I can once again open myself up to deeper physical connections with negative folks. Perhaps I will get over whatever it is in my life that will not allow me to see, own, and be responsible for just my actions and not the actions of folks with whom I have connected, but that day is not today.

But I also refuse to walk away from being a sexual being. That is what so many would have us do, stripping an integral part of our humanity away from ourselves or boxing in our choices for us. Also, it is what so many of us living with HIV do to ourselves, denying that we are inherently sexual beings and that having a sex life is critical to being a healthy person.

Dealing with the mental health impacts of meth use is no joke people. Struggling with addiction is no joke people. And living with HIV isn't either.

And, just to answer a question that has been asked by more than one person, "Why/How do you write about some of the things you write about so openly," and the answer is so simple: I am not the only person that is going through this in the world.

We hide anything to do with mental health. We pretend it doesn't exist. We judge and look down on anyone that openly acknowledges that they are living with a mental health diagnosis. I don't have to tell you that addicts are dehumanized (and we won't talk about the fact that 75% of all queer people are either active or recovering addicts or alcoholics). We do the same thing to people living with HIV.

And, because of the work I have done or the way people perceive me or the way I project myself or the education I have or the opportunities I have had, when I talk about my struggles as openly and candidly as I can, it puts a different mental image in peoples heads about who it is that lives and works and even thrives living with addiction, HIV, and mental health diagnosis (temporary or otherwise). It also lets people know that living is work and growing is work and sometimes it is hard work.

So I try to struggle openly. I try to share what I've attempted and how it turned out ... whether it is a recipe gone wrong or a date gone wrong. Just like with queer folks, the more of us that are living with HIV, addiction, and mental health diagnosis come out of our closest, the easier it will be for those that come after us to live better, healthier, and less stigmatized lives.

Send Brandon an e-mail.

This piece originally appeared in Brandon's blog My Feet Only Walk Forward.

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See Also
Ten Things You Can Do to Enhance Your Emotional Well-Being
Depression and HIV
Feeling Good Again: Mental Healthcare Works!
More Personal Viewpoints on Coping With HIV

Reader Comments:

Comment by: keya (seattle-pullman) Mon., Dec. 13, 2010 at 6:33 am EST
Wow :) You're an insperation. I love you're blogs. THank you for posting. I feel you in so many ways. For instence, I've been feeling ashamed with the fact that I'm not normal b/c of my HIV+ status.. Sometimes, I wish I can have one night stands but that would just mess with my mind a lot. I need someone who I can be in a long term relationship with who I know I can trust... Sometimes, I feel I have to be much more selective in choosing partners (don't want anyone to say my buisness) and that is a challenge. Lastly, I want to do a research paper about HIV+ and - people relations and how neg people benifate from privlege living in a system that exploites and stigmatized HIV+ people...
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Comment by: Michael (Toronto) Sun., Sep. 26, 2010 at 12:36 pm EDT
Illegal? Yes, especially in where you live(the US). Morally corrupt? Yes, any person with a moral fiber in them can see that. And yes, I am aware it takes two to tango, but you have to take the lead and tell them about your status since the other person might not have any idea you might lead them to a life that consists of taking daily medication for the rest of their natural life
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Comment by: nicole (New York ) Thu., Sep. 23, 2010 at 4:09 pm EDT
Great brandon you are so strong
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Comment by: Brandon Lacy Campos (New York, NY) Tue., Sep. 21, 2010 at 9:18 pm EDT
Illegal? In some places. Morally corrupt? Not at all. Do the right thing? I try constantly, but doing the right thing means doing what's best and just...but it does not mean accepting responsibility for the choices of others.
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Comment by: Michael (Toronto) Sat., Sep. 18, 2010 at 9:58 am EDT
You make a lot of assumptions about people's HIV status; this is both illegal and morally corrupt. You have a right to inform everyone about your status. Moreover, guilt is why at times you experience PAWS. I suggest you take a page from Spike Lee, and from now on, "do the right thing."
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Comment by: Mike C. (Jackson, MS) Fri., Sep. 17, 2010 at 10:38 am EDT
Pete - "What's with these blessings from "the Lord" to Brandon, people? Sounds like some people who get HIV also very quickly succumb to believing in the non-existent! All we can believe in is ourselves and our own power and the powers of other human beings. There is nothing else. Religion is fantasy and garbage."

That is your opinion / belief / non-belief. Do not assume that my religious faith is because of my HIV. Yes, there was a time when I turned away from the church, when I was 18. I returned to my faith at the age of 25 when I explored religions and beliefs as a whole, as an adult, where I could make my own decisions. I found out I was positive at the age of 38, 4 years after I came out. Today, my faith is as strong as it has ever been, and it has nothing to do with HIV.

It's my choice to have faith in my religion, enough so that I passed along a prayer of blessing to another human being, one who just happens to be positive.

I don't look down on you for your belief or non-belief. I respect you for that because you've made that decision yourself. All I ask is that you respect me the same, for the belief that I've discovered.
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Comment by: Brandon Lacy Campos (New York, NY) Fri., Sep. 17, 2010 at 9:54 am EDT
@Pete I respect your right to not believe in a God. Please respect my right to do so. I believe in the amazing power of humanity, the almost limitless power of community, and I also believe in the loving creative energy of the Universe that I call God, and the God I know is the Christian one, though I believe that the divine reveals itself to each person in the best way that they can understand it. For you, it seems, humanity is how the Universe chooses to share itself. If another person calls that experience, or part of that experience, Shiva/Allah/Odin/Gitchee-Manitou/or Cuatlicue...then that is his or her truth. As far as I know, ain't nobody livin' call tell me a big T truth about whether or not there is a God...as the criteria for discovering that Truth comes with some fine print that says you don't get to come back and talk about it...at least not right away...as my Buddhist practice teachs.

@Peter from the UK, thank you for your kind note...and...please....go and have sex...and enjoy that part of yourself.

@Carlo SALAMAT PO! Kumusta ka? I grew up for my first three years in Papanga, and though I am not Pinoy, my sisters and brother are half! And I may some amazing pancit and adobo ;-) Thank you for your kind words my friend.
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Comment by: Pete (Sydney, Australia) Fri., Sep. 17, 2010 at 5:37 am EDT
What's with these blessings from "the Lord" to Brandon, people? Sounds like some people who get HIV also very quickly succumb to believing in the non-existent! All we can believe in is ourselves and our own power and the powers of other human beings. There is nothing else. Religion is fantasy and garbage.
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Comment by: Peter (Hereford, England, UK.) Fri., Sep. 17, 2010 at 5:33 am EDT
Brandon, bravo, bravo, bravo for your excellent piece of writing here! It's really a great joy to see somebody writing so absolutely honestly, not putting on any false show, not worrying what the world might think, and using the same fruity language that most of us use when we are alone in our thoughts.

As for your statement that having a sex life is an aspect of a healthy life, it is food for thought. I've basically become a monk since turning HIV and I really do miss the sex. Every six months or so I slip off to London and have a night or two of sex, but apart from that I've managed to live without it. Is being without it doing me harm? Well, I certainly miss it, but, on the other hand, I have achieved so much since becoming HIV that I would not have achieved if I were still behaving in the sex-obsessed manner that I used to be. (I'm one of those unfortunate ones, a bit like alcoholics, with a system that has a very unusual and very heightened response to sex.)
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Comment by: carlo M. (Manila, Philippines) Fri., Sep. 17, 2010 at 12:26 am EDT
You should be glad to know you're not alone in what you're feeling/thinking. As a queer, HIV-poz and stigmatized Pinoy, I know I am. Your blogs are inspiring, especially at this point in my struggles. I look forward to reading more, even past write-ups, from you.
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Comment by: Brandon Lacy Campos (New York, NY) Wed., Sep. 15, 2010 at 12:34 pm EDT
Dear Mike:

Thank you so much. And may God bless you as well.
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Comment by: Mike Camardelle (Jackson, MS) Wed., Sep. 15, 2010 at 11:32 am EDT
"At this point in my journey into integrating my identity as an HIV positive man" ... Brandon, this key phrase struck me as the most important part of your blog post.

It's my belief that for each of us, the "journey" is different. It's different paths, different turns, different lengths of distance, an different lengths of time. Some walk quickly, then jog , then run through their "journey". Others seem to stroll, sometimes stepping backwards a few paces to revisit something along their "journey" before moving forward again.

For me, the eight years of dealing with the mental, physical and emotional stresses have also afforded me the freedom and elation that life has to offer. It took a while for me to discover that finding out I was positive actually saved my life. The one night stands, multiple encounters, partying 7 nights a week, just the whole lifestyle was inevitably going to kill me. I was committing suicide as I'd tried before, but in a completely different way. My reality turned the day I started taking medications to STAY ALIVE. It was then that I realized I didn't WANT to die.

Eight years, strolling, jogging, running, retracing steps, and my "journey" has brought me to the happiest I've ever been in my life.

I guess what I'm saying is that for all of us, it's learning to live with the ebb and flow, not only of HIV, but of life period.

May The Lord bless you and keep you. May the Lord make his face to shine upon you, and be gracious to you. May the Lord lift up his countenance upon you, and give you peace.

Thank you for sharing your "journey".
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Brandon Lacy Campos

Brandon Lacy Campos

Brandon Lacy Campos is a 32-year-old queer, poz, African-American, Afro-Puerto Rican, Ojibwe and Euro (smorgasbord) poet, playwright, blogger, journalist and novelist (that last one is slowly coming along). In 2009, MyLatinoVoice.com named him the #2 queer, Latino blogger to watch. In 2006, the Star Tribune named him a young policy wonk for his political shenanigans. His writing and poetry have appeared in numerous anthologies including, most recently, Mariposas, edited by Emanuel Xavier and published by Floricanto Press. This fall, his work will appear in the academic text Queer Twin Cities, published by the University of Minnesota Press. And, one of these days, Summerfolk Press will be publishing his first solo book of poetry: It Ain't Truth If It Doesn't Hurt. Brandon is hard at work on his first novel, Eden Lost, and he lives in New York City with his partner, artist David Berube, and his boss, Mimzy Lacy Berube de Campos (their dog).

It's with heavy hearts that we share that Brandon passed away unexpectedly on Friday, Nov. 9, 2012. He was 35 years old. Read memorials by Brandon's friends and colleagues.


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