It is the day after my 35th birthday.
It is five-and-one-half years since I tested positive for HIV.
It is nearly one year since I kicked my triple combo to the curb.
The journal opens with my segment. I felt very uncomfortable seeing this at first, being whisked back to a more neurotic me, rather depressed, and sort of obsessive/compulsive. I had just started on a triple combination at the time, so many pills, and had been recently released from the hospital after pulling a Code Blue -- some allergy shots sent me into anaphylactic shock, turned purple. Sick as Old Yeller. Pills, pills, everywhere pills. My relationship was in tatters, and my sex life consisted of jacking off to Machismo and the entire family of Inches magazines. And not that I understood this then, but I was compensating for the lack of control in my life by cleaning my apartment constantly. I was forever sweeping and wiping, polishing, straightening, and tidying up behind myself and anyone else who displaced a dust particle. When I wasn't streamlining the household, running to doctor and clinical trial appointments, or working, I was smoking a lot of medicinal pot and spraying Windex. A lot. The video captures images that recall all this, lots of pills and one-hits and hits on the asthma inhaler, supermodel Linda Evangelista, The Planet of the Apes, sleazy bars, brooms, and more, set alternately to East Indian chanting, George Michael's "Freedom," and the song featuring the refrain "I think I'm going out of my head" -- because I thought I was going crazy, see.
Viewing this three years later, cozied up in chaos and clutter, tripping over dustballs, I laughed. It was actually funny. God, I was a weirdo.
Then comes Orlando. The music is a hypnotic, instrumental jazz piece, kind of Pink Panther-ish. And much of the focus is on him getting around his apartment, and elsewhere, in a wheelchair. He's 35. He has some loss of capability in one of his arms and hands. He has long fingernails. I wonder if he is able to cut them himself, or if he wants them like that. The segment is quiet, sad, and oddly soothing at the same time.
Then comes Archie. It's apparently cold outside as he's all bundled up, several layers and gloves, walking down a city street, a narrow alley. Similar to the other segments, you cannot see his face. He is careful and deliberate, using a cane to make his way, each step barely the length of one of his feet, and he sits, tired, on the edge of a bus bench, and his head hangs. The trees have no leaves, and there is an empty water bottle and other debris on the ground. He is 36, but I'd guess 80 from that slow shuffle, that cane. The music is a blues number, and a man is singing, "It's been too hard livin' but I'm afraid to die. I don't know what's up there beyond the sky."
Archie died shortly after taping his images.
I watch Archie's segment over and over.
I had started out laughing at this video, like HIV is just a goofy sitcom episode starring a hapless Caucasian homosexual. Then, with Orlando, I became melancholy, and now, with Archie, I am crying. Sobbing. The blues'll do that. "It's been a long, long time coming, but I know a change is gonna come, oh yes it will." I never met Archie, but I am crying for him. I am crying for a life that reduces a 36-year-old man to relying on a cane. I am crying for a life that is over too young. And I am crying for me.
Is this a window into my future? Where am I on the time line?
I feel overwhelmed by the enormity. I'm exhausted from the fight, and I haven't even gotten in the ring yet. For crying out loud! I've been sitting on the sidelines, watching it all go by with me in the third person, still merely an understudy for a secondary role, waiting and waiting. Meanwhile, HIV has provided me an opportunity to write a lot of witty one-liners, a couple zingers and some real doozies, and it has allowed me to vent a lot of rage. But beneath the raucous laughter and the strident shrieking, I'm still grappling with what it's doing to me emotionally, with the enormous effort it takes to not let it flatten me, and with what it is bound to do to me physically. Sometime unknown.
I feel sorry for myself.
I am 35, and it is hard for me to think back to the time, the many times, before HIV so rudely barged in. It's not that I can't remember, it's that it hurts. It still hurts.
I am 35, I have been infected going on six years now, and still, still I can't tell my mom, or the rest of my family. This thing that is public knowledge, this thing that strangers know intimate details of, I cannot bring myself to disclose to the people I have known the longest, people with whom I share the most history, people with whom I share blood. Oh, the agony of this irony.
I am 35, and one year ago my T-cells were over 1,000 and my viral load was undetectable. I felt like hell most of the time, thanks to the handfuls of pills that gave me such great numbers. So I went on a drug holiday. My last regular lab work revealed a T-cell count in the 400s and a viral load around 40,000 - 60,000. Being that 350 in the T-cell department is the new magic number indicating the optimum time for treatment, I am resigned to starting back on meds in March. I will have gotten an entire year off, which I am grateful for. Yet, still, I feel sorry for myself. I really wish I didn't have to face a new drug regimen.
Will I be able to ever take a break like that again? Will the Sustiva dreams be sweet or scary? Will I be nauseated and have diarrhea every day, like before? Will I feel compelled to start scrubbing the bathtub again? And when will it be my turn to step out from the wings and get sick . . . walk with a cane . . . die?
Will I always be a bridesmaid?
Will it ever stop hurting?
One thing I do know. I will always try to laugh.
In memory of "Archie"
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