Saturday, July 28, 2007

Unchartered territory

You wake up one day into what is to become the nightmare version of your life, the inconceivable. This is the day that you will be branded a low-grade biohazard, although it will be done gently and considerably. Technically, nothing should change. In practice, everything does. You are stripped of your identity and must face the world in your new one. Like a prostitute in a shop window, you are naked, except maybe for a thin layer of liquid silicone to make your skin appear mannequin smooth. It is not even dry yet, and you are sent to stand on the street against the elements: the wind, the rain, the passers by. You are at the mercy of all of them, and you will remain so for the rest of your life.

Because a HIV status turns things around. Whatever you have been, you are now less of that thing. And less here is more. The additional stigma will weigh heavily from anything you've done, diminishing from it. You are no longer a young single mother, you are a young single HIV+ mother. You are no longer a recovering addict, you are a HIV+ former junkie. You are no longer a foreigner, with all the implications and unspoken accusations that accompany being one no matter which country you emigrated to, you are a HIV+ foreigner. You are no longer unemployed, you are HIV+ and unemployed. And goes with our saying, you are no longer a homosexual, but a HIV+ homosexual. And so forth...

And the only thing you can do is bear the burden in some shape or form. You can ignore it, but ignoring HIV always appears to lead to at least one of two things: self destruction in one form or another (drugs, pills, alcohol) and self denial which often leads to infecting others. Even when you don't infect your partner, you are living a lie, and every fiber of your being screams that constantly.
So some people go into denial. If not denial, into semi-denial and seclusion. They don't pretend not to have it, they just withdraw. They stay home, they eat alone, they avoid friends and family, the slip down into the dank well of depression. And I know because I have been there. Walking from room to room in my parents house. Slipping out for cigarettes and ducking whenever a neighbour passed by for fear of being spotted and chatted to. And to a certain extent I still do that whenever I go home. My last visit, which was a spontaneous week in June decided on just days before, I went to my first family thing voluntarily. There are many members of my family I haven't seen for years, cousins and the like, I am sure they have forgotten all about me. And why shouldn't they? They've gotten married, had children, got into the daily grind, established their adult identity, while I was clinging to shreds of my youthful one, and when the diagnosis came they turned to dust in my hands. I couldn't be the lighthearted persona I always pretended to be (though nothing could be further from the truth). I have wasted my entire life creating a self image. I have wasted it in front of mirrors, and now I couldn't even look at a mirror. I felt a surge of dread and utter panic whenever I even glanced at myself. There was no escape from me. There was no going back, no undoing. I was in my 30s, sucked into the whirlpool of adult education (for those who can't teach, and those who can't even teach, learn, and those who can't even learn properly, learn something completely impractical), without any economic stability or social rights where I was living, without a future or any type of assimilation or affiliation with that country, with a long and winding history of making wrong decisions, of running away, of embarrassing my hard working, long suffering parents, with many a dark secret tucked away in the torture cellar of my teens, on which I managed to built some sort of unplanned shack. Other people had buildings, because they had the foundations. I had the traitorous soil above that hollow of horrors, and I did what I could, and it was ramshackle but it was my own, and now I could see it for what it was, a frail, crooked assembly of bits and pieces, barely standing, but adorned with a huge flickering neon sign like a jungle path brothel, screaming AIDS.

There are so many ways to tell this story, and using metaphors is just one of them. But the truth is, i didn't even have that, I didn't have the words, they only came later. I just had the overwhelming panic. Sitting on a dark, packed, humming jumbo, knowing that I am the only one, knowing that I am the outcast. Coming out into the bustling world of travel and leisure, of business and family, but I have already written about that. There was just a big nothing. And there was nothing I could do but fall head first into that nothing. And when I try to look ahead now, the only thing I see is fog. I do see shapes in it though, but I have no idea how concrete they are. And I don't even dare to hope for them, but who am I kidding, I totally do. I want to finish this demeaning adjective. project and I want to move to Spain and I want to hide my tattoos and I want to get married and be a mom, and of course I want that with P. And then I want to teach English at a university to bright, outgoing students that I will really like and work hard for. And then I definitely want to write my book, so I wouldn't have to keep living off the odd jobs anymore. But I am not naive enough to trust that dreams lead to reality. I am still scared, and when I see other poz women, they just never seem to reach a peace of mind either. There is so much instability ingrained in this status, that I can see how people lose everything and become dependent on the state, or even homeless, when they are diagnosed. It is the stone that tips the scales and you fall off them with it strapped unto your body. If you were doing alright, you might still keep your head above, but you will have to struggle much harder with the currents. If you were already doing poorly, you probably just drown. Either way you are on your own. There are other HIV+ you can communicate with to see how they are doing, but you cannot generalize from them to you. You can find solace in others, but you go alone into the great unknown, at the whim of politicians and policy makers even more than most of that, at the mercy of fickle, relentless public opinion, positive for thorn in their side, positive for burden on their budget, positive for unwelcome conversation topics, positive for their unspoken deepest fears.

And that's where you are, unchartered territory. No one has walked here before you, although there are some trails around you but they are few between and faded. You walk and you walk, you make your life journey, despite all this. You see others making theirs. And some may not even have your status, but they are struggling their as well. And there is nothing more I can write about this, because I don't know what is around the bend, I can't guess. I can'only duck my head down and keep walking. And that means in very practical terms, get up, make myself reasonably pretty, go to work, do stuff, go home or to the gym, try to take care of my boyfriends, call my parents, and live almost as though HIV was not part of my life. That's what I can do for now. I have mixed feelings about the "poz pro" thing. I think there is a lot of genuine hrd work, and I think there is a great degree of manipulation and politics in this too, the poz and proud thing, the glam alternative. And there is corruption. At least here in the Netherlands there is a huge amount of it and it doesn't just amount to bad taste. It is on a criminal level. But I suppose for all these people, and for people in general, these are all ways of survival. I don't forgive them, but I know we are all holding on, some more desperately - and ruthlessly - than others. Some at the expense of other poz people, because they just don't care anymore. Because they can. Because they need to. Because we are fine on just getting barely by and on human companionship, and they are only fine with HIV if it includes trips abroad, five start resorts, cocktail parties, poz cruises, bareback orgies, huge houses, high salaries and even Botox treatments, all paid for at public expense from the government sponsored AIDS fonds, all paid for at our expense from money donated to women, to children, even to Africa. They have developed into a machine of greed and corruption, their "poz power" consists of levels of peer pressure to keep this momentum going, even as they are under scrutiny for the purposeful sex crimes and mass infection performed by 3 men, one of which is one of their active members. They can't break out of it anymore, and so I don't envy them. I'd rather make my own painstaking path.

Dedicated to my friends from Amsterdam.


corey said...

I just got here through Tribe.You know how that goes,go from one site to another and read your (this i guess is the last blog.)Just assuming you're a American woman living in the Netherlands,thanks for posting that.I lived there for the first 23 years of my live,moved to the U.S. and i relate.But i do think that the exploitive system is something that blew over from here.The whole "do it yourself" and funding thing was just not that prevelant when it was "socialist".I am talking about the1960's and 70's.Anyway,i condider myself still an Amsterdammer and so,LOL,thanks for dedicating this to me...Be well,and erase the message if you can,just a hello and hang in there,Corey.

Anonymous said...

miss your posts,
hope everything is ok!

Kristian said...

I am an HIV+ New Yorker, have been living positive for 20 years. I am still healthy and asymptomatic. I hope this encourages you. I am back to work after being on disability for years of expecting to die. Your writing is brilliant. I love your work. Good luck and God bless.


Dragonette said...

Thank you so much. It's very nice to hear. I hope he keeps blessing both of us, and everyone who needs it.