The Many Screaming Heads of HIV

I’m not sure how I’m supposed to feel about HIV.

I’ve heard the stories of watching loved ones waste away in hospital beds as their partners stood by helplessly. I’ve seen the tears men cry when they talk about the last time they held their boyfriend’s hand or the last time they cuddle close together before the end. I’ve felt the sadness and the shock of what HIV did to the gay community in the decades before I ever came out.

HIV is the terrible disease that killed tens of thousands of gay men and loomed over our community like an immense shadow of death. This is the disease to fear and fight against, least we repeat the horrors of the past.

I’ve also heard the stories of strong healthy men beaming with life despite their infection.  I’ve seen muscular bodies and smiling faces living lives seemingly unaffected as a result of being positive.  I’ve felt the confidence for better treatments and the hope for a cure.

HIV is the manageable condition that is almost commonplace in the world around me. HIV is something to be aware and cautious of, but it should never stop someone from having sex or prevent them from living a full life.

And sometimes HIV is a tiny echo somewhere in the back of my mind as I’m overcome by desire and hunger…and sometimes HIV is so real and scary that I feel so guilty for ever letting my guard down for a moment.

I was too young to experience the death plague, but I’m old enough to know the history and experience the lasting ripples.  I’m educated enough to know how to protect myself, but reckless enough to sometimes think I’m immune.  And all the messages, feelings, memories, and hopes merge together in me and I’m not sure if I should be uptight or chilled out about this disease–especially when new cases of  HIV are on the rise in NYC.

A friend and doctor who specializes in HIV shared over Facebook this week that he recently diagnosed an 18, 19, 21, and 23 year with acute HIV infections.  He said none of them had used condoms with any of their sexual partners.  I find this shocking and it makes me wonder what the hell young people are thinking.

To answer this, one of the replies to the post is: “Here is what is happening to our younger generation. They don’t see HIV as a threat. Its very literally “marketed” as a manageable disease in everything.. from Advocate to gay.com to local publications. Sexy models are used to promote whatever new medication and the life is great and grand. So our younger generation doesn’t ‘care.’ I had a conversation with a kid in his early twenties who said to me…”if I get it, I take a pill and besides…there will be a cure before I die.  My recent experience has been that they are educated on how HIV is transmitted….they just have a completely lax attitude on getting it.”

Another person responded with: “I’m from the generation that should have known better when people died daily. Yet, I was just as guilty of that sort of behavior before being diagnosed myself. It’s a hard lesson to learn.”

I agree that the general attitude nowadays is that HIV isn’t such a big threat and the risk of infection is low…and even if you do get infected life won’t be that much different–maybe even better because you won’t have to worry anymore.  I asked another gay man who lived through the AIDS crisis what he thinks about this and he said, “People don’t realize that there are lots of complications with being positive.  You can get boxed in–stuck–at a job because you’re not sure if your next job will have insurance that covers your meds.  Besides that, the meds are expensive and health care costs keep going up and having to rely on pills for life is not an ideal way to live.”

There’s a lot tied up in HIV–it may just be a disease, but the social and historical components surrounding it make it so much more.  We’re told we need to lose the stigma against positive people, but then told we have to be responsible citizens and stop the spread of HIV.  This makes me feel like I should look at Positives as irresponsible people…so how can I not stigmatize them?  Did they fuck up?  Should I not be like them?  But it’s okay to be like them because they can still be healthy and happy?  Who am I fighting against here?  The people or the disease?  Are Positives more sexually free than me?  Am I jealous?  There are so many fundraisers for HIV that is makes me feel like I’m not part of some popular club.  Is that crazy?   Oye!

The more I think about all this, the more I realize how overwhelming all the messages about HIV are to the average gay man.  We’re told it was once the ultimate killer, but now it’s totally fine.  We’re told to use protection, but don’t make a big deal out of it and stigmatize anyone.  You have to be safe!  But the risk is low.  Unless it’s not!  But even then you’ll be fine.  Or maybe not!

So what is one to do?  Well, as with any complicated issue a good strategy is to take things back to the basics:  Awareness, testing, protection…and keeping it all in perspective.  My journey with this continues.

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4 Responses to The Many Screaming Heads of HIV

  1. Will K says:

    living though something is different than being told about it. As a result I never have sex without a condom…and I get tested annually. Early in the crisis when I was 18 I turned celibate because no one knew how it was spread. When safer sex practices took shape I rejoined the sex world so to speak. Now some 30 years later practicing SAFER sex.. happy to say I got one case of crabs and I’m still negative. PS. When someone tells me they are postive especially someone in their 20’s I am saddened… but I never judge because WHO THE HELL AM I to do so??? I don’t know their story?? All I can do is provide support IF asked.

  2. Mike Bento says:

    Justin, its difficult for me to express how pleased and proud I am that you’re struggling with knowing how to feel about this. Not pleased and proud of you in a patronizng way, but pleased and proud of myself and my generation. We didn’t have that luxury of deciding how to feel. Terror and anger were forced on us, and there was no choice. As I write this I quickly go back to the emotion of those times, and my eyes fill. But we fought and fought damn hard not only for ourselves but for a future where great men like you would have the freedom to decide how to feel about the disease, the freedom to consider it in perspective and proportion to lots of other risks, and the freedom to make informed choices for your own lives. Thanks for sharing your thoughtful and authentic feelings about the issue – by vocalizing them you empower lots of others to wrestle with the same issues.

  3. Rick W says:

    WOW – there is a lot of emotions and questions going on in here. One line really stood out to me “This makes me feel like I should look at Positives as irresponsible people…so how can I not stigmatize them?” I know this line looks really bad out of context, but it brings up a good point. We are ALL responsible. By that I mean we ALL need to take our health into our own hands. If we know we’ve had ANY type of unprotected sex we should get tested. Too many people out there don’t know their status and refuse to get tested. Your latest HIV test is only as good as your encounter before you got tested. Have you had sex after that test? How many times have we asked our partners their status and yet we never ask them when was their last HIV test? How many times do we believe them when they say they are negative and yet they have never been tested. At least someone who is openly positive is honest and more than likely on meds AND has a much greater chance of NOT spreading the disease.

    Thanks Justin for putting this topic out there.

  4. Pingback: The Shockingly Common Case of Barebacking | BECOMING MR. EAGLE

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