Guest Writer Jaoyte on Long-term Survival
Please welcome guest writer Jaoyte of New York in this personal account of living with HIV/AIDS as a long-term survivor.
I went to open a can of biscuits the other [day], and I noticed the expiration date was March 2006, I thought "screw it, I want biscuits" I went to open the seal and it blew up, dough everywhere.
Sometimes I feel like those biscuits, like I'm past my expiration date.
I was infected in 1991. I know this because I was in a monogamous relationship at the time. I knew I probably was, but wasn't brave enough to get it confirmed until '93 (I was hoping maybe I had pulled a quick one, beat the odds - I hadn't). So, the nice doctor told me she's very sorry, but the test came back positive, she went on to say something about a retest, blah blah blah, but I didn't hear it, I heard "You're gonna die.. now, probably within the next few minutes. I honestly believed that.
I made it past the next few minutes and into the next few months, I thought even though I have AIDS, I have my wonderful partner... he left me a year later. That sucked, but despite a couple of stays at a fine mental establishment, I made it through... 1995 and still alive, but the clocks ticking.
I didn't make plans for the future, my self life was surely going to be up pretty soon. So the mid to late 90s were all kind of a blur, no direction, hope, just waiting for my day (pot also enhanced the 'blur' effect).
So in 99, I got off the pot (no pun intended) and decided to do something, anything, it didn't matter.. I was going to rejoin the work force. I had just met Mike (The Saint) and pretty much figured my disability checks weren't impressing him (he said it didn't matter to him, but it did to me). So maybe I've got a few years after all, but not many. poor Mike will have to bury me (or burn me, I wanna be cremated).
I wasn't taking meds at the time because, well, I didn't want to, there was no point. Friends and other people I knew were on meds, and they died just the same. My brother asked my why I didn't try a homeopathic approach. Good Idea!! I told him I knew several people that had done that. He asked how they were, and I said they're all dead now... He thought that was funny, I didn't.
So life goes on, Saint Mike actually sticks with me for longer than four months (the usually term of my relationships).
I'm not dead yet and it's been over 14 years.. is God playing another joke on me (He's got a dark sense of humor too). Then something went wrong (or right, depending on how you look at it). I started seeing little sparks of light in the corner of my eyes, must be I've got toxo[plasmosis] or something (I didn't know better). I scrambled, I realized I wasn't ready to die after all. I made appointments with all kinds of doctors: my HIV specialist who I'd abandoned years ago, an eye doctor, foot doctor, psychiatrist, ear, nose and throat specialist.. I wasn't taking any chances. So I go see the eye doctor, scared shitless, and asked him how long I had to live (I really did that :). He said many.. I better get another doctor, this one doesn't know what he's talking about. Turns out the eye thing was completely unrelated to anything HIV, it was something that happens to old people, and I figured, given I have AIDS, that would be me, old at 41. So now I have all these appointments I have to keep. What the hell, I'll start taking the meds again. I say again, but thats not really the case. Before, I took them when I felt like it. "Yes Wendy, I haven't missed a dose since the last visit"... I lied my ass off. Finally I didn't bother to show up for the appointments at all. Wendy was surprised when I returned, I told her about the eye thing and she gave me the usual exam and was ready to send me on my way. I told her I wanted to start taking the meds again, she nearly stroked out. I got the "Sure You Do" look, but I assured her I was serious this time, and I was. I don't want to die.
Two years later, I'm taking the meds, sure, I miss a dose every now and then, but I don't lie about it. I'm on seven pills a day now, but that includes meds for being bipolar as well (another wonderland). I'm still alive.
Now, here's the point, I never expected to live this long, I was supposed to be enjoying my eternal reward (a twinkie and rice cakes if it were based on my deeds). I've outlived my life. This has caused a sense of loss of direction, hope... there's nothing left to do. Or is there? What I can't figure out is why I keep taking the meds. I told my Psychiatrist I'm not suicidal, but if I could just 'be gone; no guns, pills or blades, I would. She made some notes in my charts and upped my Wellbutrin.
I don't know why I'm still here. Maybe I'm like one of those friends that stops by for a visit and stays too long, you wished they'd go, but they linger, droning on and on. Go home already, I wanna go to bed. I'm not really sure why I'm here. Me and God haven't been on speaking terms lately, so He's not talking (I'm looking for a replacement). So for now, I'll take the pills... and [keep]haunting the earth.
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