Mark S. King

Calling HIV-Negative Men: This is Your Time

Filed By Mark S. King | May 26, 2011 8:00 PM | comments

Filed in: Living
Tags: HIV/AIDS, negative, vaccine

This is directed to HIV-negative gay men. Listen carefully. This is your time.

I've lived with HIV more than half of my life, and people often praise me far more than I deserve, simply for surviving. They use words like brave and courageous.

You know what takes courage? Getting an HIV test every few months. You, waiting nervously while your most personal sexual choices are literally being tested, waiting to find out if you've been good - or if you're going to pay for a single lapse in judgment by testing positive, when the look on the faces of your friends will say you should have known better.

I have no idea what that must be like. I took the test over 25 years ago. The positive result was traumatic, no doubt about it, and I soldiered on during some awfully frightening times. But I have a significant psychological advantage over my HIV negative friends: I only took that damn test once.

During all of these years, I've acted irresponsibly at times or taken chances I hadn't intended. But there has been no further judgment from a blood test. That reckoning was faced long ago.

But you - whether you have been sexually active for a year or a decade - have very likely faced some tough choices and behaved wisely. You keep doing the right thing.

This is your time. The word "courageous" is for you.

If you don't define yourself, in large part, by the fact that you are HIV-negative, start now. It is your accomplishment. It says you are taking care. And it says you are eligible to participate in vaccine trials or mentor someone else trying to remain negative.

There is ongoing research now focused on HIV-negative men like you. Exciting new studies are investigating drugs to prevent infection after something risky has occurred, while other studies have shown promise for a drug regimen that might block infection before it happens.

And right now there are vaccine trials waiting for men like you to help find the ultimate weapon against HIV. They need volunteers badly.

This is your time. This research is about you. This call to action is for you.

I can already hear the rumblings on both sides of the viral divide. People are so quick to take offense, so afraid of being misunderstood, of being labeled or blamed or ostracized.

My fellow positive brothers are so bruised by stigma that it can be hard for them to lift you up. They've been rejected by you. They don't like hearing "maybe we should just be friends," and they don't like seeing "UB2" in your online profile. They might be positive as a result of one heated mistake, or due to sexual assault, or by trusting (or loving) the wrong person - and they deeply resent feeling judged.

Maybe they think your negative status is the result of pure luck, or that you don't like anal intercourse, or that you're lying.

Meanwhile, your sacrifices go unrecognized. You've seen some positive friends take early disability, hang out at the gym, and get help with the rent. They receive so much support and empathy that it must feel like there isn't much left for you. Every year we all swarm the streets for the AIDS Walk, and you can't help but wonder if your parade will ever arrive.

These grievances and resentments give me a headache. It doesn't matter much to me who is most injured. How infinite is our compassion for one another? I don't care anymore who gets what. What matters most is who does what.

This is your time. This truce, this call to a higher purpose, is for you.

You are fully human, like everyone else, my friend. You are courageous, afraid, selfish and compassionate. You make difficult choices, and you make mistakes. And we need you so very badly.

Thank God for you. This is your time.

(This piece was written as part of the GA Voice commemoration of 30 years of HIV/AIDS. I was honored to contribute to their special issue.)

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Thank you for this Mark. I got tested yesterday morning at my University Health Services and was speaking to the doctor about his experiences and he shared with me that a few young gay boys have come in claiming that they never really use condoms because they feel HIV is inevitable and it won't be so bad. It was so interesting hearing that because I was under the impression that most young gay men in my network don't see HIV as a conceivable reality, because it isn't really talked about.

It's a tension for me, wanting to honor and protect my HIV+ friends and the HIV/AIDS history in my community from stigma while simultaneously taking the precautions I can to keep myself safe. I sometimes wonder if it's inevitable for me too, but I use condoms always always always (or nothing's going in my butt!) and I get tested every 3 months... so I'm doing my best!

Thank you for this Mark, and for your work. It is so meaningful.

Thanks, Jake. And becoming infected is never inevitable, although I understand your feelings. Remember, in some U.S. cities the percentage of gay men with HIV approaches (and sometimes equals) African proportions. The fact that sexually active gay men are hooking up within a community with such a high prevalence of HIV... well, it makes it all the more impressive that people like you can consistently reduce your risks and remain negative.

Jake, you wrote:
It's a tension for me, wanting to honor and protect my HIV+ friends and the HIV/AIDS history in my community from stigma while simultaneously taking the precautions I can to keep myself safe.

Does this mean that you feel bad about using safer sex practices because this might make HIV+ men feel bad about their status? Am I interpreting this correctly?

No it's more like, I love and respect you, but I do NOT want to be one of you... Feels kind of weird

OK. I understand you better now. It's can be a tough situation, no doubt about it. I try to think of it this way: I want myself and the other guy to stay as healthy as we can given our particular individual circumstances.

Eric Payne | May 27, 2011 6:45 AM

Mark,

I wish you had better defined your definition of "HIV negative."

You were writing to a target audience not of persons who are simply HIV negative, but to a target audience of men who are sexually active, presumably with different persons.

You say: "You know what takes courage? Getting an HIV test every few months. You, waiting nervously while your most personal sexual choices are literally being tested, waiting to find out if you've been good - or if you're going to pay for a single lapse in judgment by testing positive, when the look on the faces of your friends will say you should have known better."

"Courage"? To take an HIV test? It's not bravery, it's responsibility, both to him/herself and his/her sexual partners.

In an informal poll I conducted some 20 years ago, when I was writing AIDSpeak in the Bay Area, the only fear a great many men had about testing, even anonymously, was they would be disclosing to someone that they were gay. Even guys who marched in Pride parades, or attended ActUP! and QueerNation meetings and rallies were hesitant to reveal to a "government official" their sexual orientation. Better closeted than shipped off to some imagined Homosexual Gulag.

The bottom line, though (and I'm going to use common language, here): If you're going to fuck around, you need to be tested for HIV every 90 days... especially if, at any time you've screwed around bareback. It doesn't matter if you're a top, a bottom, or a cocksucker. You have a responsibility to yourself, and to potential future sexual partners, to know your HIV status.

The survivors of that wave of devastation - the late 80s to mid 90s - are all older now.

We remember the friends and colleagues who fell along the way. We remember the pain and frustration of trying to get the public health branches of the government to even acknowledge there just might be something communicable out there that killed.

The country was living in an age where appearances on the world stage meant everything. The impression the First Lady's ballgown made on the Russians was much more important news than what progress US/Russian peace talks were making. Style was substance. And dying fags simply didn't look good so, therefore, weren't important.

A lot of people - gay and straight - died. Before a pathogen was "officially" considered by the government, private citizens had that part kinda, sorta, figured out. The Watergarden, a club for men in San Jose, CA, had bowls of condoms on their counters and in their rooms before the Centers for Disease Control recommended their use. Now defunct "sex clubs" in NYC had posters on their walls detailing the possible existence of an unidentified sexually transmitted disease that seemed to target bottoms and was often fatal, recommending condom use during anal sex. Volunteers in studies across the nation became sicker and sicker. Some from the disease. Some from the medication. Some from a combination of both.

But from those many deaths came a simple life-saving truth: Use condoms during sex, period.

I'm not so sure about your definition of courage, Eric. It DOES take courage to take the test that could give you "bad news." it's the same reason so many people put off going to the doctor for multiple (non-HIV) related tests. Think how many people could survive cancer if they'd only been tested, or mental illness diagnosis. Facing your fears is always courageous.

Eric Payne | May 27, 2011 7:18 PM

And think how many professional baseball players we would have today if every T-ball team had just given a trophy to every member of every team, instead of just the winners!

I'm sorry, I've given this some thought, and at the end of the day (it's now just before 7PM), I have to disagree with you.

Bravery is running into a falling, burning skyscraper, knowing there's no way to extinguish the fire and knowing there's very little possibility of getting anyone - including yourself - out of it, alive.

Bravery is engaging in an action in which others benefit, but places yourself in serious risk of death or injury.

Getting an HIV test isn't "brave."

It's responsible.

But to tell younger gay men they're being brave for doing it? Tell you what, quit giving them that encouragement. If they don't get tested, after the tens of thousands who died in the 1980s - people who helped define what HIV was and what actions could lead to infection with their very lives - then, in under a decade, they will be decimated in numbers exceeding the death toll of the 80s. Even worse, they will have gone to their deaths in ignorance... but not ignorant of this communicable pathogen. It will be conscious ignorance that kills them; they will have made an overt decision to be stupid.

Don't look to me to call people getting tested "brave" to get themselves pricked with a needle (what are they? Five year-olds?), but definitely look for me upfront, calling them stupid, as they lay dying.

Cold-hearted? You damnbetcha. And anyone who lived through the 80s who is cutting the youth of today any slack when it comes to HIV... well, I'll use a word we used a lot in ActUP! and QueerNation... "Shame! Shame! Shame!"

HIV infection is 100% preventable. It was also 100% preventable in my youth... except we didn't know what it was, and how to stop its progression. By the time it was figured out, it was already almost a decade too late. It's only because I wasn't the partner engaging in the most "at-risk" behavior in every sexual encounter I had (in plain language, getting fucked just never appealed to me, not even as a curiosity) that I made it through that period, physically, unscathed. Mentally and emotionally, though? Well...

My last AIDSpeak column, published December 31, 1995, dealt with a "look back" at AIDS and HIV related news stories. I reprinted a headline, and then gave a brief description of the 1995 AIDS/HIV related press release. At the end of the column, I revealed that while the press releases dealt with 1995 news, the headlines (which perfectly described the press release) were from 1985.

My next paragraph consisted of one line: So, the only thing that's really changed regarding AIDS and HIV is: (with the next 10 paragraphs being a simple listing of names of persons, locally and nationally, for which AIDS was listed, publicly, as a factor in cause of death. Some of my outlets went me one better, adding their own names from obituaries that were not available to the pre-internet microfiche researcher... or typesetting the names of their local citizens in italics or boldface.)

The last paragraph was another single line: "I can't do this anymore." And I couldn't - when Alex died, that November, his was the last "Celebration of Life" I attended.

For anyone under the age of 48 to die of any HIV-related illness is, simply, inexcusable and unworthy of any sympathy. To call people "brave" for doing the most minimal action - outside of breathing - to, quite possibly, keep their own life going spits on the grave of every person, gay or straight, who died of AIDS-related illnesses prior to 1999.

Oh, Eric. *sigh* Your attitudes are as old and faded as the newsletter columns you keep quoting. ACT UP and Queer Nation are nothing more today than tattered t-shirts in my bottom drawer.

I understand your 1980's post-trauma, and your indignation that younger gay men are behaving in a way we would find disgraceful "way back when." But this generation has no idea what you keep screaming about, Eric. That horror show has ended (as much as you keep indulging in your horrific, distant youth). And the more you quote Reagan-era activist slogans, the more out of touch you appear.

We'll have to trade war stories sometime. Meanwhile, cut some slack to a generation living under very different circumstances. They don't need old farts shouting "shame!" at them. They need compassion and support.

Eric Payne | May 27, 2011 10:29 PM

They know unprotected sex can kill.

They may not know how that knowledge exists, but it's been a fact of their lives for most of their entire lives.

If they don't respect their life enough to wear a rubber, don't expect me to commend them on their "bravery" by doing something responsible.

Oh, Mark, Mark, Mark... being an adult doesn't mean placating the children... but it's much more important to be their friend?

Eric Payne | May 27, 2011 10:57 PM

Mark,

I was a bit catty in my "Mark... Mark... Mark" statement. Please, allow me to rephrase.

How could anyone who wrote something as beautiful, and as deeply moving, as Once, When We Were Heroes think merely doing the responsible thing - so that 5 or 10 or 20 years from now, minds aren't once again being lost, and one spouse doesn't have to mix a poison cocktail for the other, and men (healthy just months or, sometimes, simply days before) aren't drowning in their own phlegm as cancerous cysts make their lungs unusable - is "brave"?

Once, When We Were Heroes is a powerful piece, Mark. For me, I guess, that's the message that our youth need to here - the collected war stories of AIDS - not the Reagan years, as Randy chronicled that, I think, better than anyone could... but from, say, the Clinton years on, when the deaths had slowed, but not to the trickle they are today.

But, for God's sake, don't coddle the youth.

Toward the end of his last draft of "Band," (and I believe he may even have incorporated the thought into the narrative), Randy believed that the gay sex overdose that was going on in the gay communities in NYC, LA and SF were almost certain to guarantee some new pathogen would take hold; he was still amazed at the inter-connectivity of those distant gay communities toward the end of his life, when Randy discovered his lover had dated (several decades apart) the same man Randy had, in Los Angeles.

So, let me ask you a question: if there were a cure for AIDS tomorrow, and it was verified as a cure, would you tell these kids to throw away their rubbers and to explore their limits? Would you advocate, for them, a return to the nonstop sex that was so readily available in the 70s and, yes, I do know the "nonstop sex scene" still exists, if one knows where to look... vice never goes away)?

If you were cured tomorrow... would you fall back to 1970s and 1980s behavior, or would you approach sexual encounters much more warily?

If I were single, I know the answer for me. I don't really like the taste of latex (even "flavored" latex), but - even with a cure for AIDS - it would still be two years of monogamy and mutual testing before that latex could come off.

We'll have to disagree about whether or not being testing regularly takes courage, Eric. My experience counseling gay men suggests that it does.

Your attitude about being tested -- that it is simply a responsibility and presents no particular challenge -- seems antiquated and naive, Eric. It doesn't acknowledge the stigma surrounding being HIV positive that has grown stronger in the gay community in recent years. When you witness your peers rejecting and judging those with HIV, it can make that HIV test a lot tougher to bear.

I deeply appreciate the struggles of a (past) generation. I was there. But your 20-year old survey and what happened to you and me in our now-distant youth -- while making us more committed to safe sex and afraid of the consequences -- are memory pieces now, and difficult to apply to the challenges of gay men in the here and now.

Eric Payne | May 27, 2011 12:15 PM

All I can say to that Mark (and, by extension, Bil, since Bil's comment was along the same lines) is that you are correct. I've been out of the dating scene for 16 years; it's been 14 years since the last time I've been HIV tested, voluntarily (been tested, as an automatic, twice since then as a precursor to cardiac surgery). Becoming HIV+ is not the concern in my life it once was.

So the pendulum has swung, and now the HIV+ are shunned, not only be the "real world," but the gay community? Shame on them. Shame on the younger homosexually oriented who continue that "I can't be unpopular!" viewpoint out of high school and into their lives as adults. It wasn't all that long ago that a portion of the younger homosexually oriented were labeled as "bug chasers" - gay men who felt they were either doomed, simply by being gay or gay men who felt they couldn't share in the whole "gay experience" if they weren't infected. Now, it's bullying through social segregation, huh? Wow, I've missed a lot...

Then again, looking at my life with Bill, and life as a single, young, fag...

No, I haven't.

I seem to remember, "back in the day", all sorts of complaints within the men's community of splitting along status lines. Plenty of HIV+ guys thought they were avoided and stigmatized, at least in the communities that I lived in during the late 1980's through the mid-1990's. And HIV- guys thought they were ignored or forgotten while the fight for recognition, treatment, cure, etc. for HIV raged on in the streets.

Plus, lots of us saw people die within a year or two after being diagnosed - talk about motivation to "do the right thing". Nowadays HIV has become more of a chronic illness that requires management. That doesn't mean people aren't responsible for getting tested, but the motivation might be a lot lower when you don't see people getting seriously ill and dying right before your eyes day after day.

It really is a new situation; and the younger guys basically don't understand what a lot of us guys who lived through the '80's went through. How can they? I still think it takes some courage on my part to get tested, and I've been doing it now for, I don't know, maybe well over 25 years.

Mark-

Thanks for this article. I am having a first-hand experience in PeP as we speak. I did something rather stupid. Luckily, I have good friends around me who all insisted that I see my Doctor first thing on Monday morning. I'm glad I did.

I have a gay doctor. I came in with the face of shame, and he immediately reassured me, and said, we all make mistakes, I have before, and you're going to do what I did, and go through PeP treatment.

Before I know it, I'm at the pharmacy. The Doctor had written PeP on my prescriptions. The pharmacy said it would take two hours to fill- I did like my Doctor said and showed them the word PeP on it and all the sudden they told me it would be ready in 15 minutes.

I took my first dose of Truvada and Isentress before 24 hours of exposure had passed.

Baseline bloodwork has already come back - everything looks good. Taking these drugs has given me a new respect for people who must take them everyday for the rest of their life, of which I hope to NOT become one.

The first week was nasty, my stomach was bloated and all upset and my body generally just felt ran-down. After a week, those side effects have mostly subsided, of which I am very thankful. I've been on treatment for two weeks and am proud to say I have not missed a dose.

I feel extremely lucky. Lucky that I had good friends who insisted that I go to the Doctor. That I have a Doctor who is gay, knew what PeP was, did not judge me, but empathized, and put me on a course of treatment immediately. That I had a Doctor who knew the Pharmacy well enough to get me bumped to the front of the line, all by putting PeP on the script.

I wonder what would have happened if I had of gone to a doctor in a rural area. Would they have known the appropriate course of treatment? Would they have given it to me?

I have two more weeks of these drugs to take. Then get tested in the following month. I am very hopeful that things will work out for the better- that I will remain HIV-negative. The experience has taught me that I need to value myself more, and not allow myself to be put into dangerous situations, out of depression and self-hate. It has taught me that I love myself enough to protect myself, no matter what the other guy says.

It has also taught me that these HIV-drugs are no panacea. They side effects suck and they definitely change your quality of life. I have so much more respect for people that are HIV-positive. I've sometimes thought, what is the big deal if I become positive, I'll just pop a couple of pills a day. Well, it is a big fucking deal.

I feel blessed that I live in a time where PeP is known about and available. Every gay man living has made a mistake when it comes to sex. I'm just glad there is an option now to hopefully make those inevitable mistakes that will happen, a thing that you can learn from, and not something that will plague you for the rest of your life.

In all my relations.

Thanks, Mark. Overcoming fear is bravery- and there IS a fear of HIV testing in our community.

We'll just keep harping on it until it goes away...

bigolpoofter | May 27, 2011 11:13 AM

Sing out, June! You and I have talked over this concept a few times in the past, and I agree that HIV-negative Gay and Bi men and MSM who test regularly demonstrate courage by their willingness to confront a possible unfavorable outcome every few months. Though I learned much from friends who lived and died with HIV in the 16 years between my infection and my confronting it, nothing could have prepared me for the feeling of being cut off from my negatoid brothers--viral apartheid--which a positive result yielded; and that's something everyone who tests faces every time he or she tests, given the prevailing attitudes in our culture, especially among Gay men.

Dr. Nancy Padian 10-year study on HIV transmission bit.ly/lbJha6 (video) bit.ly/kA0FjO (Paper)

John Gagon | May 27, 2011 1:32 PM

I believe it takes courage to both take the test and it takes courage to come out as poz. It can also take courage to come out as neg to a group that is poz as well. It is a very personal subject and since everyone's experience is different, we're bound to offend someone. But that shouldn't stop us from saying what needs to be said, let the criticism come and maybe we can eventually understand one another. I think it's better said than left unsaid.

I like the fact that so many rumors will be dispelled and stories shared as a result of this conversation.

Let's just hope those of us who are neg can live through this continual fear and those of us who are poz can also life through their fears and find whatever it is they need and desire as well. We all have a hardship but they're not all identical. Together, we should stay unified and combat the general stigmas and homophobia and fight for each other. Thank you!

I was one of those activists that fought Randy Shilts on the closing of the baths. We felt that it was far better to have places where you could have condoms and safe sex literature and peer group pressure than to drive it underground to places where you could not control the environment and which might be dangerous. In many ways we have been proven correct, except instead of parks and public restrooms, it's Internet hook-up sites and phone Apps like Grindr or Party N Play. Even so, I feel like I am seeing the gay world more and more through Randy's eyes as I see the proliferation of bareback porn and websites, blogs and parties and the complete indifference (or support) from most of the community. Here in San Francisco many AIDS benefits are co-sponsored by Naked Sword, a porn website that shows videos from a variety of studios including bareback companies like Treasure Island Media. Sometimes bareback porn is given away as raffle prizes at these benefits.

I think we have taken being non-judgmental a bit too far. There are some things we should be very judgmental about. If it were discovered that one of the bareback porn companies were secretly owned by Fred Phelps or another homophobic bigot we would be furious. Well why is it any better when the owners are gay and their motives are to make a profit? Our enemies can only wish AIDS upon us. We are the only ones who can make their wishes come true. Isn't it time we stopped doing their dirty work for them?

Mark, you speak of people who try to do the right thing most of the time but have occasional lapses in judgment. Many (if not most) sexually active gay men, myself included, fall into that category. But that ignores the reality that there is a significant minority of gay men out there who are making, dare I say, a "lifestyle choice" not to use condoms. They almost dare HIV to come get them and when and if it does they expect taxpayers or ratepayers to foot most of the bill.

As a black man, I have been very disappointed to see many responsible black people sit back and let an irresponsible few hijack black culture by glamorizing violent and criminal behavior and misogyny and homophobia. As Edmund Burke said, "The only thing necessary for the triumph of evil is for good men to do nothing." Barebacking is the gay community's moral test and one I'm afraid that we are failing.

Eric Payne | May 28, 2011 8:35 AM

Very well said, Claude.

I don't want to make this a paean to Randy, but those endless hours of trying to get, what seemed to him, an entire world to shoulder a little responsibility when all the citizens of that world though he was just trying to ruin their fun weighed on him.

I wasn't around in the period of time "Band" first popped into his head. But he was one of the most intelligent people I've ever met; to just look around at his circle of six friends, watch them all die from six different illnesses, mentally index those six into a couple of newspaper reports from NY and LA, and just know everything was tied together by some unknown pathogen... by the time the CDC actually admitted a pathogen was at play, Randy already had Band plotted.

And the Band Played On should be required reading for everyone; juniors in high school should have it as required reading in their classroom. By the time every high school student begins fucking for fun, they should have already been constantly quizzed on their reading, and have undergone at least one essay test on Band.

(By the way, I make that statement with tongue firmly planted in my cheek.)