The morning after I got my HIV test results I got arrested at an ACT UP demonstration.
It wasn’t a spontaneous decision: I’d been planning to get arrested for months. It was a big demonstration at City Hall on the one-year anniversary of ACT UP—I’d joined an affinity group and was all excited about my first ACT UP arrest. But it was rough: The cops were total homophobic assholes—they screamed at us the whole time, “You’re gonna die of AIDS, you goddamn faggot cocksuckers!” and shit like that. And they roughed us up pretty good. But I’m glad I went through with it.
The night before, after I got my diagnosis, I suddenly wasn’t so sure about getting arrested. I called a friend in my affinity group for advice. He was very droll and very wise. He said, ‘Lee, it doesn’t really matter if you get arrested tomorrow or not. But eventually, you’re going to have to go on living your life.’
At the time of my diagnosis, in 1989, I had read somewhere that the average length of time between diagnosis and death was nine months. I don’t know if that was true—there was a lot of conflicting information back then,—but it stuck in my mind. Nine months is, of course, the length of a human gestation period. I thought, ‘I’m gonna do everything I can to stay healthy and buy myself another nine months.’ And I keep giving birth to myself. It’s always surprising.
The biggest negative [that being HIV+] has had was on my relationship: I’d been in a relationship for eight years. It was a good, solid relationship but my HIV status shifted the dynamic. It was subtle at first, but the distance between us kept growing, and eventually, I ended it. We’re still close—he’s my dearest friend and the truth is, we’re better friends than we were lovers. But it took a while to get there.
Ultimately, my diagnosis was a catalyst for a positive change. But it sure felt negative at the time.”
Lee Raines, 57, marketing director
New York, NY
Diagnosed: 3/27/89
Image via Steven Rosen
Scott Bonzitski
I TRULY have empathy for HIV+ people. The ONLY thing I DO NOT understand is WHY did they NOT protect themselves!? I was born in 1961 and I LIVED through the scenes of watching my fellow men die just because they had a new “lover” every week or so. I PROTECTED myself. I still wonder WHY others did not. The signs were there and WE ALL knew there was SOMETHING going on. Like I previously stated, I HAVE empathy for them but… Why DID YOU allow it to be transfered to you? I am NOT pointing out any faults. We ALL have to LIVE by our decisions and I hope and pray the younger people in this age of resurgence will follow their hearts and THINK about life over a few minutes of pleasure! YES, some things DO last a lifetime and I for one, am glad that I, myself, did survive. I am now in a relationship going on 16+ years…Both of us are HIV- which contributes to us both having the same philosophy. Sorry if anyone is offended but,…That’s the way I do things. THINK B4 YOU ACT!…SB
Scott Bonzitski
PS: I know that there will [probably] be alot of critics and hatred towards my being honest about my OWN opinion here. That is OK. Some will need an outlet to vent their own frustrations for their own decisions…SB
CBRad
@Scott Bonzitski: You ARE right. And in many cases one could say it’s the guy’s own fault (those who acted recklessly, repeatedly). But there are so many variables, too. When you’re young you’re more apt to take a risk sometimes. I always protected myself, except for two or three times when I “slipped” and just kept going along with the sex act even though I knew we were venturing into the unsafe (just luckily never caught anything). Etc.
Andy
@Scott Bonzitski: There are plenty of people who got this virus in the confines of a “monogamous relationship”. Plenty of others who were too young or too inexperienced to realize “what was going on”. Still others who reasonably assumed that the ravages they saw around them were the side effects of drugs. Even today, when we “know better”, the conduits of infection are never a simple as people like to pretend. You say that you aren’t interested in “pointing out faults”, but in your proclamation that people threw away their lives because they weren’t as smart as you, you do just that. “Think before you act”? Seriously? How about you think before you type and have a litle respect for the dead? Can this godforsaken rag get through a discussion of HIV without a bunch of self-rightious jackals finding a way to blame the victim?
CBRad
@Andy: I don’t think he’s being self-righteous. Just that he saw a lot of guys acting recklessly again and again, long after we knew to practice safe sex. I don’t think he negates there are other ways, situations, where guys caught it. And I think his main message is “Think before you act” which everybody should be reminded of repeatedly.
Rey
@Scott Bonzitski:
Only someone with a pathological need to feel morally superior would tie a person’s worth to a disease. You know, far, far more people die due to obesity than HIV; and the cause and prevention for obesity are well known. Feel free to get on your soapbox at a McDonald’s.
tazz602
@Scott Bonzitski
You have a valid point – not everyone who is HIV+ had full knowledge or were lied too by partners, or about the disease or were prevented from getting information from their small town community where such things are never discussed.
BUT – like everyone else said – to try to trumpet being POZ as the best thing that has happened to you is a disservice, not only to yourself but to the millions of young gays growing up NOW. The last thing we need is to tell people that being Positive was a good thing, you may have dealt with it in a positive way and used it as a vehicle for personal growth, but in NO WAY does HIV improve your life or make you a better person, it was how you dealt with it and the challenges.
We need to tell the truth to the younger generations, they need to protect themselves and stop glamorizing being HIV+. That is the STUPIDEST thing we ever allowed as a community.
jay_max
@Scott Bonzitski: Well, do you want a ribbon or a medal? I guess I have trouble understanding why, of all days today, you feel the need to man-beat your chest and trumpet to the rest of the world that you are HIV-. Congrats! But that’s no excuse to take the tone that you did, unless of course you just wanted to be a jack@ss about it. If that’s the case, you succeeded very well! Hope you feel better about yourself now.
o
Why did you name yourself Lucretius, anyway? It wasn’t after the naturalist, was it?
Henry
@o: The name was chosen because it’s the male form of Lucretia.
Brad
This World AIDS Day has truly hit it home for me. Last week I was at a college party for my local university where somebody spiked my drink and assaulted me. He confessed later on he was positive. The doctors started me on PEP within 12 hours of the assault and despite the assurances from every single doctor who’s spoken to me that they are extremely optimistic, today has not been a good day for me. I can’t imagine what people go through living with HIV, let alone the uncertainty of having been exposed this way. It puts everything in a whole new perspective.
Mike in Asheville
@Scott Bonzitski: I was born in 1959, started going to bath houses at 18. That was 3 years before anyone knew anything about what this new disease was. My first symptom showed up in 1986, also the first time the HIV-antibody test was made available.
So, Scott, most who died and most of us long-term survivors did not not protect ourselves as there was not a know virus that required protection. And for the very long-term survivors like me (based on my medical history and my symptoms, my doctor estimated I was inflected in 1979-1980), obviously we have maintained a healthy enough lifestyle, combined with lucky genes, to keep on going.
For myself, the mid 1980s were horrifically and emotionally difficult times. The same week I learned officially that I was HIV+, my cousin, the first of our generation and 9 years older, died of AIDS after a 3 month battle. This was so sad and scary — I always had a bit of a cousin crush on him, so handsome and godly build, and sweet and charming. He was gone before we hardly knew it. Scary, of course, because I too was HIV+.
A year later, the same week we learned that my Dad had 3rd stage prostate cancer, my lymph nodes became so swollen I had to seek treatment. During the next 3 months, I watched my Dad shrivel from the cancer, a respiratory problem and 2 heart attacks, enduring several weeks in the ICU before dying. And thinking, there goes me in a few months.
All the while, losing friend after friend, so suddenly and without warning, so fiercely and devastatingly.
On the very bright and shining side, my boyfriend, who took the HIV antibody test together (he, HIV-) way back in the Spring 1986, well he is now my husband and next month, we will be celebrating our 27th anniversary (of course, I remain HIV+, and he remains HIV-). We lost so many friends, we never forget to remember them, each and all.
phigmentor
@Scott Bonzitski: It’s also worth mentioning that many people who are victims contracted the virus through bad blood transfusions, before tests were made available to test donated blood for the virus. One of my close friend’s dad died from AIDS due to a bad transfusion (he was a hemophiliac and needed regular transfusions).
Also consider what many people have said above, many long term survivors and early victims to the disease didn’t *know* to protect themselves. But, that was then and this is now. People know to be careful, get tested and stay safe.
WillBFair
Prevention, darlings. Prevention, prevention, prevention, prevention, prevention, prevention, prevention, prevention.
WillBFair
@Scott Bonzitski: We all have various degress of self hatred and internalized homophobia. The trick is to admit it, and to discover and control our self destructive behaviours. That’s not an easy task. In fact, it’s excruciating.
There are many of us who can’t admit it and go on acting out forever. The tragendy is that they don’t respond to logic or pleading or argument. And they have a butt load of avoidance tactics.
Notice the endless excuses and subject changes above to avoid talking about prevention. These have been the main avoidance tactics for thirty years, and we are still waiting for the community to shut them down and begin a mature conversation. Here’s hoping.
the other Greg
@Mike in Asheville: I bet Scott B will be baffled by your comment. He’s the type who can’t fathom how an HIV- guy could stay negative for 27 years with an HIV+ partner. Plus he figures your boyfriend should have dumped you the second he found out you were poz! All very perplexing to simple-minded moralizers.
Lee
@Scott Bonzitski: For the record, this interview mentions when I was diagnosed, not when I was infected. In all probability, I was infected before 1980, long before “safe sex” was part of the lexicon. (My partner, thankfully, was HIV negative, and remains so.) I never said being HIV positive was “glamorous” or “the best thing that ever happened to e”, but neither do I allow my HIV status to be a closet or place of shame. You seem to have a lot of negative feelings towards people who are openly HIV postive, and your feelings seem to echo certain people’s feelings about people who are openly gay. Perhaps you should reflect on that. I hope it goes without saying that I discourage risky sexual behavior.
Lee
Correction: The “Target City Hall” demonstration was the 2nd anniversary of ACT UP, not the 1st.
the other Greg
@jason: Wow – are you a time traveler from 1989?
Mike in Asheville
@jason: YOU ARE A FUCKING IDIOTIC MORON!!!
matt
@Scott Bonzitski: The thing is EVERYONE makes mistakes and displays poor judgment, most people do so on a very regular basis. Luckily for me my poor choices and lack of judgment is pretty unlikely to end in an HIV infection, but in other places or times it very well could. For some reason people have a tendency to assert their superiority over others based not really on the actions of others, but on the consequences of those actions. A disturbingly high percentage of gay men engage in at least some bareback sex, but most of them don’t get HIV. People like to put all of the blame on people who are HIV+ when in reality they are just the unlucky ones who reap the consequences of the poor judgment of the many. If you want to do something productive instead of bashing HIV+ you would be better off bashing those HIV- individuals who allow the epidemic to continue.