[I] may be crazy but I'm the closest thing I have to a voice of reason.

15 April 2010

HIV University

Tonight we start Chapter 5, Longtime Survivor, and I admit that I’m anxious. I don’t know how this chapter will work as a serial. It’s not episodic like the others, and for all I know I’ll decide to post ten pages of it tomorrow, as there seems no dividing it before that part of the story has gathered strength. The original title of this chapter was HIV University. When Jose died in 1994, I lived in a world that reviled gay men and believed that God was raining down hellfire and damnation on the sodomites who brought us this dread disease. It wasn’t just the crazy TV evangelists who believed this, most of the country did. So I set about writing HIV University. It’s a very different world today, and I’ve no doubt that those of you born after the mid-80s don’t know what I’m talking about. Which is a very good thing.

LONGTIME SURVIVOR (HIV University) part 1

In 1995 I had myself tested for HIV. Long before that, I knew to use a condom, to stay away from intravenous needles that weren’t fresh from the package, and to treat blood as a biohazard. The day before I received my test results, I wrote a letter to one of my sisters. I didn’t grow up with this sister, nor anyone in my father’s family, but less than two months after my best friend’s death I found myself on the Oregon coast with the whole family: dad, step mom, both sisters, their husbands and kids. I arrived at the family vacation awash in the grief with no name; neither orphan nor widow; the crush of living in close quarters, the push to have fun with people I loved but did not know, these slammed up hard: grief buggering family fun. My sisters, so young, neither within spitting distance of thirty -- or twenty-five, for that matter -- death had never touched them. I could not speak my feelings to them. Hell, I could barely contain those feelings, but I tried, mentally packing my nitroglycerin grief between layers of cotton batting and ice. It wasn’t long before my husband drove me up the coastline while I screamed.

Before going to the coast, I had called a friend. “How can I do this? How do I talk about Jose? How can I not talk about him? They’re Seventh Day Adventists. I know how the church feels about homosexuality.” When this friend told me to bear witness, I found myself remembering the beauty of Jose dying:

eyes closed, chin
lifted, cheekbones carved and wood-brown
translucent as petals, lips rounded, reaching
for water, eager
almost singing.

At the coast each night, I lay awake in the shared room where my husband, my father, and my stepmother lay sleeping. Each night I slipped out of bed, got my pictures of Jose, and fell asleep with them spread around me. I didn’t know what I was doing. This was a time in my life when my favorite picture was of my best friend just days before he died; with light caressing his cheekbones, illuminating his brow, his eyes rolled heavenward; here Jose is retablo, altar, ecstatic saint. Here he is Christ reclining before God in the final hour, terrific to behold, and I was possessed of a grief that had me sharing an eight by ten of this picture with all comers, exclaiming its beauty. But not at the coast.

Nearly a year later, as I waited for my HIV results, I composed that letter to my sister. I didn’t know it at the time, but I was writing to do what I hadn’t known how to do at the coast: to find, or maybe to create, a space for the emotions I felt and also to create a place for my friends, my dead and dying friends, whom the world so often condemned or simply denied. That was a part of the world I could not understand, but I think on some level I understood that, at least as represented by my father and my sisters, this world did care about me and so perhaps it could care about those for whom I bore witness. To my sister I wrote, “Another friend has died.” I had been practicing that phrase. From the time Jose died, I practiced saying it to those whose lives remained unmarked by AIDS.

To my sister, a nurse, I wrote that my friend Frank had only nine T cells left. This sister worked on a small reservation in rural Idaho at the time, so I wasn’t sure how much she knew about T cells. The T cell is a principal type of white blood cell. Its job is to identify foreign antigens in the body and to activate the other immune cells. Each human body starts out with approximately 1000 to 1500 T cells. When the body gets down to 500 it's in danger of contracting thrush, a fungal disease that erupts in a white, yeasty coating on the throat and tongue; usually accompanied by fever and diarrhea. At 200 T cells the body is in danger of contracting pneumocystis pneumonia, a standard indicator of AIDS. I told my sister that a count of 200 T cells is what the CDC -- the Centers for Disease Control -- defines as AIDS, that when you have HIV and your T cell count dips below 200, you’re considered to have AIDS whether or not any opportunistic diseases are present. I hoped these numbers could convey to her just how scary it was to know that Frank was down to nine, a tiny committee of nine to fight off all infections. I didn’t tell her that we had named them. Silly names like Tabitha and Endora and Jose Jr.

As I wrote, I found myself remembering when Jose had only two T cells. He gave me the news over the phone, pronouncing his fate with the astonishment of a scholarship boy discovering he’d gotten into an Ivy League college.

“You have two?” I said. “What are you going to do with them?” It was the same voice that had popped out of me when Jose learned that one of the opportunistic infections was causing his brain to shrink. After that, whenever Jose forgot something I’d say, “Well what do you expect, Jose, your brain is shrinking,” and we’d laugh. Longtime survivors say attitude is everything. People who give up simply die.

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