Today I no longer feel real. HIV has hijacked my body, my soul, and my world. I am nothing more than a walk chemistry experiment. My very existence is dependent on designer drugs that slap together an immune system that in nothing more than a mockery of my former biology. I see the chinks in my armor that no one else does. I know my existence is nothing more than clever placements of smoke and mirrors. I am but a magnificent end product of chemical wizardry.
The problem with a smoke and mirrors existence is that eventually the smoke thins and the mirrors dull. The chemical magic begins to fade and your heart begins to crumble. I am now an old man with AIDS, and it is becoming increasingly annoying. Life’s delicate balancing acts are now taking conscious work every day.
Frankly, living with AIDS is a bitch. I am goddamn tired of it. I think “fed up” is likely a better term to use. I am fed up with taking the pills, feeling the daily pain, having my insides bloat and bluster just for the hell of it. I am really over being so painfully tired and fatigued nearly all the time I have taken to sitting in a locked bathroom at my clinic to rest. Now how fucking pathetic is that? I literally have to hide in the can on a daily basis and “pull myself together” to do what I love to do more than anything in world- practice HIV medicine.
My words must be coming across to some as man who is whining or may be past his time. Maybe that is true. I do not really know or really care. What I do know is things fall apart and a lot of people are scared of me. Many of the people around me ignore the fact I am chemistry experiment in a sack of skin and bones. They simply bypass the reality that I am a fabricated man. People are scared that if I crumble then what can be around the corner for them?
But let me get back to the “fed up” part I am feeling these days. I think many of us living with this damn virus have these days. We know the epidemic has lingered on too long and after 30 years not many give a damn anymore. I don’t blame them. It was not supposed to be this way. Yet it is. But here is the bottom line of bullshit I can no longer stand. Please stop ignoring the fact I have AIDS and it is a struggle. The drugs people with HIV/AIDS have to take are not “magic pills” but brutal chemotherapy.
And please dear God in heaven stop telling me how “good I look”. I could honestly drop kick a nun every time I hear those words. I know I look “good”. Hell, I work hard at it, and I am not clueless that I am vain. I also know I am consider good looking, muscled, wickedly smart, and can even be charming despite the fact that crap trickles deep from my guts when something upsets the chemical reconstitution of me. Simply put I am fed up with my HIV and it’s wrath being ignored. Yet, I honestly don’t know what I want. I know I don’t want pity, sympathy, or “tolerance”.
I am more than excellent lab values printed on paper, muscles under a lab coat, or expert clinician. I am frail and fearful. I know I am beaker of chemically induced health that if swirled too hard the precious formula my slop out of the top.
Living with AIDS is exhausting. It can consume every flicker of fire in a person. I feel it in me more and more and see it my patients’ daily. These feelings are hard to quantify, and maybe that is the problem right there. Trying to define an emotion that rambles in the ether of life is foolish, and I am a fool for trying to do it.
The magnificent writer Annie Proulx wrote: “If you can’t fix it you got to stand it.”
I know I can’t fit it and I am wondering if I can stand it anymore.