Monday, February 11, 2008

What's Worse Than Discovering You're HIV Positive?

I’ll tell you what: a lot of things. I think anyone reading this can easily come up with a good long list without my help. But for one example, how about the following: Being HIV-positive and not knowing.

Maybe some would argue with that assertion. I did, and I did my best to keep myself “ignorant” for many years, although I had suspicions and fears for so long that any stress related to “knowing” could surely not have eclipsed the stress of wondering, avoiding, and being in so-called denial.

I think about HIV every day, but I’m not consumed with anxiety about it unless I let those thoughts spin out of control. But as a positive person, I can’t imagine not thinking about it. Aside from having to remember to take my pills and capsules—all in coordinating blues and whites, like Delftware—I would say that, in some sense, having HIV has come to define who I am and what my world revolves around. Although again, I have to say that I’m not consumed by it. Those statements may seem paradoxical: I’m defined by HIV and yet I’m not. My habits and thoughts revolve around it so often, yet I’m happy to let it recede into background noise, like a radio playing in another room while I read or clean the house or get on with all the mundane business of living. The radio is audible, but not the focus of all attention and activity. Hey, I can multitask. With a soundtrack.

* * *

I’m prompted most strongly to write this now because a friend—not a close one, but someone I’ve known a very long time—was just diagnosed as positive. My tendency is to say yet another friend. Yes, another one, in my age group: under forty (or very nearly so). I had also discovered just before Christmas that a 34-year-old friend with whom I reunited after many years was also positive.

I struggle with how to write about this without making it “just a story” or just an example used to illustrate a point, or to illustrate my particular brand of navel gazing that verges on (or spills over into) being uselessly self-indulgent. But while I believe that no one’s story or struggle or experience should just be fodder for an anecdote, the truth is that this recent news has touched me and made me spin off into thoughts about my own HIV experience that I want to explore yet again, and I have to believe that there’s nothing wrong—or insensitive—about that impulse.

I frequently remember a bit of dialogue from John Guare’s Six Degrees of Separation, in which a character takes great pains to make clear that a person who intersected with her life was more than “just an anecdote to dine out on.” It’s in that spirit that I launch from news of my friend’s HIV diagnosis into further personal comments about “this thing” that some of us are saddled with.

* * *

How did we arrive at this place? How did I arrive at this place—this cohort of the Post-Safe-Sex-Revolution-HIV-Positive? I wish I could say that I no longer feel guilty about being positive, no longer feel any shame or regret, no longer beat myself up for “doing this to myself despite ‘knowing better.’” Yet there are times I feel like I was one of the most irresponsible people in the world, and I mourn for both myself and others who may be in similar situations (realizing that those “situations” can be totally unrelated to HIV as well).

While none of that self-loathing or re-questioning is useful or productive, it’s once again like that radio playing in the other room: always there—the soundtrack to daily life. Sometimes the volume is cranked up a bit higher than at other times, but the drone never quite goes away.

I’ve thought many times of writing a post entitled “I Want Your Sympathy Even If I Don’t Deserve It.” The rational brain knows that there are so many things wrong with a statement like that, starting with the word choices of “sympathy” and “deserve,” which are usually the types of words I want to expunge from my vocabulary—or at least from the vocabulary of the HIV experience. Still, those words surface in the well of genuine emotion; they’re what I feel sometimes. Maybe it’s a variation on that theme—something I’m saying to myself: “I Want MY OWN Sympathy, Even If I Don’t Believe I Deserve It.”

* * *

Mostly, the rational brain believes that HIV and a lot of other things “just happen,” along with a lot of other shit in the world. Which is not to take a fatalistic tack and say that I or we or you or they can’t do anything to change the “shit” that happens to us. It’s just to say or to ask: What’s the use of blaming or pointing fingers?

I’ve done some stupid things in my life, and things that were done from a position of truly not caring about whether I lived or died. There’s more than a grain of self-pity in looking back at the person—me—who did those things and thinking how unfortunate it was that he felt the need to do them. I guess I think it’s a shame that he didn’t realize how valuable his life was at the time, but like everyone, I’ve learned some lessons through whatever means it took to learn them.

Again, I have to step back because that last statement sounds like I’m saying that I acquired HIV as a means of learning some cosmic “lesson,” which is not what I believe. HIV has been quite a lesson, there’s no doubt about it, but I certainly don’t think that it’s a lesson “doled out” by some universal power. I believe that some things come our way due to good or ill luck just as surely as they do due to our relative “stupidity” or intelligent behavior.

* * *

So I’ve been dealing consciously with this wily virus for almost six years now, and I was probably dealing with it unconsciously for at least a little while before that. Time flies.

Is life “better” since I’ve known? Was ignorance bliss?

Life’s different since I’ve known. It’s been better in some ways, and worse in others, often unrelated to HIV (at least at first glance). I made a decision to deal with life—or at least with HIV—in a head-on manner during a ten-day meditation retreat, even though that kind of confrontation had been scaring the hell out of me for years. In a different mindset, it’s so hard to grasp the obvious (and always factual) statement that “Either you’re positive or you’re negative. Those are the only two options.” It’s such a straightforward statement, yet so difficult to embrace or to convince yourself to verify. “I’m not sure” can seem like such neutral and safe ground sometimes.

I want to write more about this, but I feel like I’m spinning off into nonsensical streams of consciousness—which in their own way can be ok I guess. I hope to continue this sometime soon.

I’m left right now with a single feeling: Sometimes it’s compelling to want answers to so many things, but it’s for me it’s comforting to try to make peace with the questions that just keep coming and coming and always will. Like everything else, they can wait around in their own limbo, and if they’re never answered, that’s a perfectly fine outcome.


Huntington said...

Thank you for writing so much of what I don't feel free or able to do.

Ladron de Basura (a.k.a. Junk Thief) said...

There is almost too much here to comment. I am touched by what you wrote, and it reminds me that in my own blogging that it's important to write heartfelt, personal things from time to time. It's so much easier to post and comment with glib and uninvolved barbs. That's always safer and not very rewarding. I wouldn't want to read this every day, but these types of reflections are part of why I come back to your blog regularly. But don't drop the meringue and pork in the meantime, sir!

Gledwood said...

I know someone who got a false positive a few years ago... he went utterly nuts. Really NOT the person to give that news to. He was hardly the brightest light on the xmas tree to start with... a drinker who drank so heavily he looked like he had Alzheimers when he was still only 30... eventually his girlf managed to drag him to the 1st of his appointments... of course the "viral load" test shows up nothing wrong... I'm sorry that story couldn't have happened to you my friend it must be very difficult sometimes. I know quite a few people who have the HIV because I'm on the drugs... nasty business all round

Salty Miss Jill said...

Ok. This is the third time I've tried to read this post without tearing up. I was not sucessful.

All I can say right now is thanks so much for writing this.

You're so wonderful, Joe.


Anonymous said...

This is a moving post. Thank you.

BigAssBelle said...

okay. first, thank you for this. as i've been reading, i've done so with the full awareness that i am one who has dodged so many bullets, HIV included. i shot dope sharing needles with dozens of folk in the early 70s, i shared beds with countless men in the late 70s and early 80s, i drank myself nearly to death, yet i've never contracted any venereal disease, no hepatitis, no permanent liver disaster, nothing.

so i must tell you that i have enormous sympathy for you, but even more empathy. i have no trouble at all putting myself in your shoes because we are exactly the same.

i am very much aware of how much in this life is sheer luck and happenstance. i have such great good fortune just by virtue of being born in this country. 600 miles south and i'd be longing to cross the border in hopes of being able to make a living, get an education.

you had terrible bad luck and i hate that for you. i salute the courage it took to find out the truth, but i can't even imagine how that must have felt.

yet look at you, joe. you live this life with grace and honesty and true emotion and you're not bitter or angry or full of hate or resentment. in your shoes, some "what if" and regret would be expected. but that you manage to keep from letting that swallow you whole is remarkable to me. i don't know that i could do it.

it's something i've admired about people who accept their mortality ~ i fight the concept that my time here is limited, always and forever. thank goodness for the drugs, because you can live a long and happy life. but the diagnosis itself has to make you step back and look at life as a finite thing and that you just deal with that on a daily basis in such a way. . . it's inspiring.

the "deserve" thing really hit me. when mike was dying of hepatitis C, there was a great deal of talk about it in the papers, television, medical world. as with HIV, there are "good" ways to contract it and "bad" ways, and everyone wants to know how did you get it???

i hate it, because just as with HIV, there is a withholding of understanding and acceptance and compassion if you "brought it on yourself." I HATE THAT! as if all uninfected people everywhere never did anything wrong, never did anything risky or dangerous? surely that can't be true. it goes back to luck.

mike and i did the exact same things. i was lucky. he was more careful and yet was not.

you and i have done many of the exact same things. i have been lucky. you not so much.

doesn't help to rail about the inherent unfairness of life, but what it really boils down to is that life is a complete and total crapshoot and the best we can hope for, maybe, is to deal with results of living the life with get with as much grace and wisdom as possible.

that's what this long and rambling response to your moving post is all about: you have that grace and wisdom and this touched me greatly. thank you, i adore you, my friend.