My life one blog at a time

There is a scene in the movie “Pee-Wee’s Big Adventure” that I especially like. Now, you don’t have to know the movie or the characters to appreciate it. But short story is, boy looking for stolen bike ends up sitting quietly for a moment in the mouth of a papier mache dinosaur in Texas, next to a diner. He is sitting with a middle-aged waitress who works at said diner.

The waitress has just told her life story, her abotions, her dreams, what she believe she has deserved all her life. But, she says, she met a man who treats her badly, who crushed her dreams, who made her feel small, and her she remains.

Pee Wee, the boy, turns to her and says, with a totally sincere straight face, “You know something? Everybody’s got a big butt. I want my bike back, but I can’t find it. You want your dreams, but you think you can’t find them. I know what I’m going to do about MY big but. What are you going to do about yours?”

What indeed.

My big but these past five years has been AIDS. Thinking that the person I have physically become, the life I have gradually adopted out of necesity, has been the hindrance between my dreams and their realization. HIV has derailed not only the obvious dealbreakers like, I dunno, being able to travel the world,staring a new career,being on stage (ok lack of talent there).

Even the littler things… let me rephrase that… the not-so-connected with HIV things, have been impacted. Like what I deserve as a person. Who I need in my life. What makes me really healthy, as in what encourages me to seriously, and on a deep, deep level, really want to stay on the planet. Taking these drugs makes me sick. Taking them every day makes me sick thinking about it. the junk I have to put up with and overcome in order to keep my world, my health, my life from deteriorating completely is often daunting. I have had to be brave, and I was not by nature a brave person before.

Self esteem is a tough thing to hold onto with HIV and AIDS, assuming you have it in the first place (and let’s face it, many of us with HIV got the vitus specifically due to a dearth of self esteem and self worth). Trying to create self esteem while dealing with HIV and all things after is like learning to fly a plane while upside down and stalling. Blind. With bunnies duct-taped to your hands.

People are often criticized for turning to drugs, booze, the funny farm (note the reference to the movie “Valley of the Dolls.” I’m good for stuff like that) when they are dealing with AIDS. People are criticized for giving up, for not taking meds, for all kinds of coping behaviours which, given the circumstances, are totally rational responses to an essentially unreasonable situation.

Note I said AIDS and not HIV. We like to pretend that there’s a difference between the 24 year old who has had HIV for three years and is on his first round of meds, and the 48 year old who has knocked on heaven’s door multiple times, burned through many drugs, and scores of friends. We like to pretend that the guy with HIV who works in a law firm and struggles with Sustiva and Trizivir has the same experience as the guy on disability who cannot work or else he loses the income he needs to stay at poverty level, who, due to a depleted immune system, handles the meds like a fish handles battery acid. For the sake of solidarity, we do this. It’s a nice gesture. It’s pretty much bullshit.

I have less in common with most people who have been infected with in the last year than I have with many people who do not have HIV at all.

It has taken me a long long time to even begin to develop self esteem. And it comes and goes. Luckily, I am noticing that slowly but surely, my standards for acceptable situations have risen. They are much closer to being parallel with the standard for a healthy situation. Not nearly there yet, but within shouting distance. Given time and T cells and the grace of the Goddess, I might just reach that place.

My big butt remains my ability to be in a healthy romantic relationship in which both parties are getting more or less what they need, and even, through negotiation and compromise, what they want. Not there yet.

I have dated a few pozzie men and few not pozzie.

AIDS does not help. Crisis might bring people together, but the day to day mechanics of loving with AIDS takes strong will and strong hearts from all involved in order to work. It’s not like in the movies, where the hero’s true love is sometimes a bit pale around the edges, and sometimes dramatically falls out on an ice skating rink.

It’s the reality of spending an hour in the bathroom throwing up or having diahrrea, sometimes, every day for months at a time, while doctors try (and fail) to figure out whats wrong. It’s changing your expectation of what love’s evolution must be when one party lives in highly coveted low-income housing and would be a total idiot to leave it behind, no matter what.

It’s loving someone who cannot normally pick up the check in any eating establishment that does not have a drive-thru window, much less pay half the rent. But who makes a killer picnic, and knows more free ways to spend a Sunday than there will be Sundays left on Earth.

It’s knowing what burdens you are going to assume, and what sacrifices you are going to make. It impacts the quality of life of everyone involved. In some ways… I like to think many ways, for the positive. But to ignore the negative is not only absurd, it’s dangeorusly unhealthy. It was cute in high school. Not so much now.

We all have a need to be needed. As cliche as that sounds, a desire to be desired and all that. And sometimes, no often, we exchange our standards for society’s. We — meaning I — swap out what we truly need in a nurturing and healthy relationship and are simply grateful to have a boyfriend. One-sided gratitude is a terrible foundation for a healthy relationship. And heaven help the person — and by the person I mean me again, — who, along the way, has developed some self esteem.

Self esteem is a relationship killer, unless it’s the right relationship, the real one, of course.

I even managed to keep a psychologically dry relationship on life support for five years. Thats five long years. And, in the last six months or so of it, a lot of bourbon, let me tell you. The petty lies and cheap tactics and stopgap measures I had to take just to create the illusion of a balance of power were nothing short of Seigfriend and Roy. And why? Because somewhere at my core, I felt I was simply too damaged, too wrung out, to ask for what would nurture me.

Times, they seem, appear to be a changin’. Which is good, in the long run (assuming there is one of those for me) but maybe not so much here in the short run. I respect someone’s need to find themselves, to grapple with their demons, to reconcile the horrific childhoods full of beatings and neglect, to reconcile the betrayal of religion and to discover a path of real self worth. I respect a person’s inalienable right to decide what they want and who they are.

But the time to ponder whether or not you are ready for a relationship, or whether you need to work through your issues on your own, is, in my humble opinion important, before you are the owner of a second set of house keys, and the keeper of another heart.

As someone with AIDS, I am personally amazed that I am reaching this point. Never thought I would. I suppose that growth happens even when you don’t expect it to, even after you feel pruned from the tree of life. some tendril, some bit, still struggles to find the sun, and turn the petals to face it.

I am beginning to see that maybe my big but isn’t so big, after all.

I am aware of many of my flaws (also aware that self-realization is one of them). But despite them, and maybe in some ways, because of them. I am also beginning to get a feel for what I deserve, and it’s neither selfish nor unreasonable. I deserve to be cherished, reassured, challenged. I deserve to spend my years with someone who can laugh with me, and laugh at me. Who can talk to me, who has things to say, things he’s passionate and articulate about. And as sexy as I want to be.

Someone who can be goofy, and someone with whom I can experience profound things. I deserve someone who will bring me homemade soup three days into a ten day flu, who will walk thorugh the door to find me in my goofiest sweats, bedhead, and the dorkiest glasses you can imagine. I deserve to have that someone set down the soup, kiss me, tell me I am beautiful, and mean it.

I deserve someone who will say “I love you” first.

I deserve someone to whom I do not have to teach true love, and to whom I do not have to barter shame for acceptance. I deserve someone who will say “I love you” without a “but…” I deserve someone who will challenge me to better myself, even is that self-awareness leads to scary places. And I deserve someone who can be afraid of those places, yet stand by me.

I deserve these things, because this is the person I am slowly starting to become.

As I am slowly becoming someone without such a big but… I am starting to expect that in others.

Of course I am damaged. We all are. And my AIDS isn’t yours, or anyone else’s. My life, my disease, and ultimately, my death is my own. It is a part of me like the color of my eyes. I am slowly outgrowing shame.

But whatever happens, I have to have faith that my petals are indeed straining to the light, to the truth. I have to believe that there is a greater purpose, and that I am duty-bound to find it… that there is hope beyond the pale of death, if I am only brave enough to seek it.