Monday, June 29, 2009

Science for a Rebel Heart

Two seasons have passed since I've come here. It feels like I had to hibernate my heart for awhile, so that I can bear it. So that I can understand better, what being h.i.v. positive actually means in this time.

Finding out was not the worst thing. Somehow, it didn't change anything for me. I didn't cry. The world stayed the same. But my place in it changed. How I would be viewed was changed.

I've been grateful. It's not 1983. I won't die from this. My family has been very supportive, generous, understanding and accepting. I am cared for, in shameless ways.

Winter, and then Spring. A time of great silence broken by a splash. I adorn myself.

After reading an article from a medical journal that studied longevity in HIV positive men with t-cell counts between 350-500, and after reading that the sooner these men started their meds, the longer they ended up living, I called up my doctor and insisted on starting, even though my t-cell count was 422, a moderately good level.

Do you know how these trees matter? White t-cells, those little white knights of the body. And the demons of virus. My health now is a ratio between them.

A normal count for t-cells is between 800-1200. If this number drops below 250, you officially have AIDS, because your body can't fight off any number of afflictions that are present for most of us anyway.

The flesh is weak.

The hungry demons can be counted among the tens of thousands, hundreds of thousands, while your white knights slip below 300. Each virus is like a drill that digs itself into a blood cell, and then uses the cell to replicate itself inside. Destroying the blood cell, exploding it from the inside, while out fly the demonic hungry saucers.

When I decided to go on meds in January, my t-cell count was 422 and my viral load was at 16000. Over the first year that count was moderate, but fluctuated between 44,000 and at my lowest count, 8,000. These are lucky numbers. I know people in the hundred thousand count, and around 300 tcells. . . Everyone is different.

Medications are different and have changed dramatically. My doctor says that in the early years the practice was to demand early treatments, and the side effects were intense and very damaging. Frightening times. Then in the 90's they gave cocktails and had some restraint. Patients would try to wait as long as possible to go on the meds because the side-effects were so awful, and because once you start them, you cannot stop for the rest of your life. Some patients would wait until their t-cell count was as low as they could bear, as close to 200 as they could go. My doctor says there's a threshold. At some point the body cannot recover a normal t-cell count.

The medications are fascinating. They do three things. Prevent the virus from being able to enter blood cells. Prevent the virus from being able to use the cell to make virus parts. Prevent the virus from being able to replicate itself inside the cell. Hense, a cocktail of drugs to do all these things. Once this is done, the body can recover its t-cell count.

I started ATRIPLA, a three in one pill. I take this one pill every night now. My pink pill, 1-2-3. I chose it because the side-effects are nervous system related and not gastrointestinal. Which means night tremors and not diarrhea. Though I wonder how my liver will fair in the long haul. . .

I spent a month being sick. Flulike. No night tremors. But a dizziness that lasted into the late afternoon. It's died off and now I only have it at night. At ten days I had a rash begin to cover my whole body, neck to wrists, neck to ankles. So I took Claritin for a month or so to keep it at bay.

Spring is one gross extravagance after another. I'll tell you what.

And all of this matters how? I'm not sure. It's not like being sick, really. It's like being in a kind of purgatory between shame and shamelessness. I don't have guilt, I have a sense of my body's vulnerability. Each of us will come to this somehow. This is the first way I will come barefoot to my mortality. The pink moons hiss. I don't care. My viral load is undetectable, Zero, which means if I get tested I test negative for the virus.

The stigma is something else entirely. How to own it. And not just in public, but in the naked mirror. I have lit degrees, and teach lit. studies, and have read enough Dickinson and Larkin and Whitman and Hardy and oh, Henry Miller and Dostoevsky to have brooded over love and death and misunderstanding and the tragic failure of human longing, the transcendent chants of rebellious hearts against the fates of bodies in the earth's light.

Silence is the enemy of the rebel. The point of the rebel is to speak out against the injustices of the human body, which are many and everywhere.

Maybe that's why I told my family, against the advice of my X and close friends and even my doctors. Maybe that's why I've started this blog, despite the mask. I can't stand the culture of silence and anonymity that's so ingrained in the gay community now surrounding this disease, which in America, in California, at least, does not have to be very different than having something like diabetes.

So tonight I'm clinging to Audre Lorde, black american Lesbian poet, who when she discovered her breast cancer in 1977, presented it in a panel discussion on Lesbians and Literature at the MLA conference, asking them, "What are the words you do not yet have? What do you need to say? What are the tyrranies you swallow day by day and attempt to make your own, until you will sicken and die of them, still in silence?" And who recounted her daughter's advice to her beforehand:

"Tell them about how you're never really a whole person if you remain silent, because there's always that one little piece inside you that wants to be spoken out, and if you keep ignoring it, it gets madder and madder and hotter and hotter, and if you don't speak it out one day it will just up and punch your mouth from the inside."

I'll take my pills. I'll open my mouth. But don't expect anything less than a curse from me. I love my flesh more than I love anything.