Saturday, December 1, 2018

What That Red Ribbon Means to Me

With today being World AIDS Day, I thought I'd write a bit about my complicated relationship with HIV.

I don't have HIV, and I have been incredibly lucky as a 52-year-old gay man to have not lost any close friends to AIDS (though I do have friends with the virus). By telling my own tale, I don't mean to minimize the experience of people actually living with it. But HIV has transformed my experience as a gay man -- how could it not?

I first remember hearing about AIDS when I was in high school. I regularly watched TV news with my family, and when the reports began to emerge in the early '80s and no one knew what caused it or how it spread, I remember my mom saying, "This is going to be bad."

I wasn't out yet, but I felt a visceral fear, knowing that it affected gay men and that might mean me. By the time I finally did come out as a college student, in 1984-85, the virus had been identified but there were no effective treatments. It was essentially a death sentence. I was involved from the very beginning in our campus AIDS Education Project, which worked with the local public health department to advocate for "safe sex."

To say that it cast a pall over my dating life would be putting it mildly. All the talk of risk made dating or sleeping with anyone seem like walking a knife edge. Very early on, I experimented with another guy in ways that were patently unsafe -- fortunately he wasn't infected. But after that, I was scrupulously careful.

I was so careful, in fact, that I subconsciously walled myself off. I was openly gay, I had gay friends, I went out to nightclubs and participated in gay life. But I rarely made myself personally, emotionally or sexually available.

Some people criticized "safe sex" at the time -- so-called "sex positive" activists -- because you had to be so conscientious about your activities. You could never really let yourself go, get into the animal act. And that's true -- even when I did sleep with someone, I was always thinking about the rules and what would or wouldn't expose me to danger. It was, to put it mildly, a drag, and I had guys laugh at me because I was so super-careful.

Even then, my infrequent encounters led me down dark scary paths. I'd wake up two days later with a sore throat or a swollen lymph node and think I was going to die. I would put myself through weeks and months of fear, even though I'd been careful and done everything "right." Doctors would tell me there was basically no way I could be infected, but I wouldn't believe it -- and I'd get tested multiple times during the ensuing six months until I finally convinced myself I was fine.

And then I'd meet someone else, and the cycle of fear would begin again.

I'm sure a psychologist could have a field day with this behavior, exploring my unresolved internalized homophobia or whatever, but I assure you I am not the only gay man who felt this way. I've heard enough stories to know. Ultimately, while I told myself I wanted romance, I subconsciously put myself in places where I didn't believe it was an option (Peace Corps in a Muslim country) or distracted myself with impossible romantic attachments (a best friend who was the object of a long-term unrequited crush).

Even as effective (but harsh) HIV treatments became available my personal life remained somewhat paralyzed. I did meet and sleep with people, but formed no meaningful romantic attachments through the 1990s, and I can't tell you how much time, money and emotional energy I wasted on fear of HIV during those years.

Finally, after I moved to New York in 2000, as treatments were becoming less arduous, I began to loosen up. I still wasn't a libertine, not by any means. But I met more people, had more stable relationships, became a bit wiser and became more comfortable with the idea that I could have sex responsibly and not be afraid.

I don't mean to make it sound like those were the "bad old days" and it's all over now. As we all know, HIV is still no picnic and contracting it is serious business. As I said, ultimately, I am so lucky -- and not just because I never lost any friends or contracted it myself. I'm just barely too young to be of the generation that got slammed most heavily by AIDS. On the other hand, my youth, when I should have been meeting people and going on dates and having fun, was consumed by it.

I often think how it could have been different. I could have been born a few years earlier and been infected before anyone realized there was a danger. I could have been born several years later, and matured into a world where HIV was more manageable and preventable. Either option might have changed my life, for better or for much, much worse.

(Photo: A pub near London Bridge.)


  1. scary times. it's ironic that you were afraid of forming a stable relationship when that was probably your best protection (after both partners tested).

  2. I'm saddened by how much this horrible disease impacted on your life.

  3. 1984- in the thick of it- mysterious and terrifying- walking in terror like time bombs-so many succumbed , incredibly devastatingly sad. There was so much irrational fear, lack of knowing, of "getting" it that my friend's would not even hug. We lost so many. Just two years ago , a more careless friend committed suicide due to the symptoms and effects of HIV drugs- my first boyfriend died from the "gay cancer", no body could be sure of anything. I am SO GLAD that you have been obsessively careful, thank you for staying alive, Steve!

  4. What a brave and beautiful post, Steve! I am really impressed with your openness here, your honesty.
    The first I was really aware of what was then being called, as Linda Sue said, "the gay cancer," I was in nursing school and I read an article about it, very well researched for what was known then, in Rolling Stone magazine of all places. I remember bringing up the subject in a public health care class and the teacher shrugged it all off saying something like, "Oh, that's not going to be a real problem because of the very limited pool of potential victims."
    Well, I knew she was talking bullshit and I also knew that viruses have no regard for sexuality. And then the virus did indeed spread although for awhile, yes, the victims were mostly young and gay and the CDC scratched its head and finally got to work.
    A good friend of mine got HIV. He was at the forefront of the testing of new drugs. He is still alive and living a beautiful life. But it was a time of hysteria and misinformation and your story of not being able to live a normal life due to the fear of infection is probably very, very common. It was a tragedy all the way around and still affects the life of many.
    So many.
    I can't remember. Did you see "Dallas Buyer's Club"? A different perspective as the protagonist was straight but a very good movie, I thought.
    I learned so much about the disease from "And the Band Played On."
    There are segments of our society who lost SO many loved ones. For people who did not live through those times, the fear and the grief cannot even be imagined and I say that not even as a gay man.
    I remember a friend who was in a lesbian relationship at the time and feeling a huge amount of Catholic guilt about that asking me if I thought that maybe AIDS was truly God's revenge on homosexuals.
    I said, "Well, if that's true, lesbians must be most loved by him," because at that time, the risk factor for gay women was probably the lowest of all.
    Anyway, blah, blah, blah.
    I love you, Steve, and am so glad that you are here with us, safe and happy and healthy.

  5. After all this, I'm sure you would look back and say , "I wouldn't have had it any other way."

  6. Thank you Steve for this very personal and honest reflection.

    It was such a scary time. In the eraly 1980s we lived in a commune and some of us where gay men. And this was catholic Ireland. The words panic and witch hunt do not capture it.
    One of the gay men in our house had a nervous breakdown, for a while, he was convinced that there was a secret conspiracy ready to persecute and kill all gay men. He recovered. Others were far more scared and there were suicides and suicide attempts. I went to several funerals.

    I remember a quote by Fran Lebowitz I read somewhere:

    "You know who got it first? The brilliant, witty, hot people. The people, quite frankly, who were getting laid a lot. That's the real tragedy of Aids – it wiped out a generation of those people. If those people could come back now, they wouldn't believe who'd become stars in their stead."

    I for one I glad you came through this time safe and well.

  7. This post brings back so many memories for me. I appreciate so much that you shared your story of the times, as scary and tragic as it was. My first husband and I lived in San Francisco for a time in the mid 80s. The undercurrent of the AIDs epidemic was everywhere there. I was working at San Francisco State University back then. Flyers on posts and walls about it, for information and counseling. We lost friends and cried often.

  8. We lost a friend to AIDS back in the 80's and it pained us very much. I was always curious why a mutual gay friend would deny that AIDS had claimed his life. I guess that's the way it was in those scary years. Thanks for this post, Steve.

  9. Wow! You have such courage. I don't know you, really, but you seem to be a most honorable man!

  10. Very honest post - thank you Steve. And what you wrote resonates with my personal experience, although I am 15 years older than you. I think the perceived link between "AIDS" and "gay" in the minds of my family (which included a wife and children), friends, work colleagues and general environment in the 1980s and 1990s kept me in the closet until I was 55 - I came out in 2006 when things finally felt "safer". I still feel like I was a coward though and I wish I could change that.

    I can relate to the fear and trepidation, the internalised homophobia and self-loathing, all of which results in us living a double life, hiding in a closet and denying our real selves for so long. In my case it was not HIV or AIDS that did that to me (I am not affected by either) but the prejudice of others that contributes to a life that could have been better lived.

    On the other hand, as one of the replies above puts it, maybe I should be grateful that it turned out that way - I would not have wanted it any other way. At least I am alive and well when so many are not. And they are the ones we remember. And the PLHIV who are with us now that we fight for. Thanks for a thoughtful and thought-provoking post.

  11. This is one of the best posts you've ever written and thank you for your candor. As one of your longterm friends, I can tell you that you were not alone in these concerns, nor in the making yourself unavailable. I would fall into that category for a variety of reasons as did several women of my acquaintance. It rocked my world to discover when reading one day that though HIV could be passed to women--from either gender. I lost several male friends to HIV in the eighties and nineties and I also heard and saw firsthand the ignorance surrounding HIV as I found myself writing about Illeanna Martinez and how she was treated and her mother's fight for her education, among other things.

    I think you should be glad you were scrupulously safe in your practices. I don't think people take that as seriously as they once did.

  12. I have little personal experience to draw on although the fear was also there to some degree, even for a straight female. My university days - my days of exploration - were just after the Pill became widely available and just before AIDS surfaced. I can remember worrying for a few years after that that something might be incubating in me. It's not hard to imagine how much more incredibly frightening and difficult it must have been for a gay male at the height of the crisis, and your post has brought that into sharp focus for me. Thank you for a very moving essay.

  13. Ellen: I think taking those initial steps to form a relationship was a scary hurdle. You're right in the long run, but getting there seemed an insurmountable obstacle!

    Colette: It affected all our lives, really. And that's the point of World AIDS Day -- to make us remember that, and the fact that it still isn't cured.

    Linda Sue: I remember my dad talking to me very frankly in the early years, emphasizing that no one knew how it's transmitted. He was scared I'd get it from kissing someone or shaking their hand or hugging them.

    Ms Moon: Thanks for your comments, and I love you too! I did see "Dallas Buyer's Club" and I LOVED "And the Band Played On," although it scared me to death when I first read it. The thing about AIDS is that it wove tragedy into ALL our lives, even those of us who weren't personally afflicted.

    Red: Given the circumstances, yes, I think I did the right things. But I wish the circumstances had been different.

    Sabine: I love that quote! It's so true. Who knows what we all lost. It was a very scary time and it's too easy to forget that now, when AIDS isn't even in the headlines anymore. (Even though it remains a crisis for millions of people.)

    Robin: I can't imagine what it must have been like to be in San Fran in those years. The epicenter of the crisis! (Or one of them, anyway.)

    Catalyst: That IS interesting, about your friends. I think the stigma of saying someone had AIDS or died of AIDS was seen as such a burden that others tried to avoid it.

    Peace Thyme: Well thank you! :)

    David: I can't imagine how hard it must have been for you to live with a family while feeling like someone else inside. And yes, AIDS and HIV helped drive so many people deeper into the closet. Another of the many tragedies surrounding that disease!

    E: I think we even talked about some of this in real time! I remember discussing AIDS and HIV news in and around Tampa with you. I'd forgotten about that Eliana Martinez case. (For others who are interested: )

    Jenny-O: I'm sure everyone felt the fear to some degree. And of course there was always herpes, which was also incurable and well-known even before AIDS. There were always risks of one kind or another!

  14. you bared your heart and soul, such a beautiful post, our family has lost members from the horrid beast AIDS, I watched my best friends son die a slow and miserable death following a life of fear, insecurities and self loathing, it was my greatest wish that he could have had some happiness, it was easier for him when he left this some northern Canada community and moved to Toronto, he found himself and the true David came through, a strong talented, kind handsome gay man to only have his happiness cut short by AIDS. I loved that young man and to this day I remember him crying at 11 years of age because he had fears of what his life was to be, small northern community, close minded idiots drove the sweet boy to suicide attempts, sometimes I am ashamed to be human.He died on a cold January day, kneeling by his bed in prayer, a terrible, loss, mean while the assholes that judged him are still alive living their nasty lives, so sad. Thank you for such tender post.

  15. You really poured out your heart out in this one and I can't blame you. I can't even imagine what living with such a threat must be like. I lost a friend to the disease as well. He was doing okay on the meds for a while but he got pneumonia and couldn't fight it. His former partner is also infected but thankfully, he's doing well. My best friend David is gay and I saw him through a scare several years ago but, he was lucky. I love the quote Sabine included too!

  16. I really appreciate your reflections here. I was on the knife edge myself, and my college boyfriend, who I later discovered was bi (on the way to gay?) died of AIDS. After we broke up, he was my best friend, and when he got sick, I nursed him in my home until that final trip to the hospital. I was sure I had contracted it myself; i told my husband, then my fiance, and he held me and did not walk away. I remember when I finally got tested, and the phone call telling me I was HIV negative. It felt as if the world suddenly exploded into full color, and I hadn't even realized I had been seeing everything in shades of gray. It was a sad time, the early 80s. We lost so many people. But we survived. It has been so interesting to watch my kids navigate the dating life. "Being safe" was something they grew up with. I think, as a result, they were a lot less wild than our generation. I was in college in the 70s for god's sake. I feel lucky. Thank you for the open heartedness of this sharing.