
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.