Ever hear the sound of a ticking clock and then slow it down in your mind so each movement of the second hand sounds like a pounding hammer against steel? This is what the past many months have been sounding to me leading up to this day.
Today marks 20 years since I was diagnosed with HIV. My T-cells were at 206, anything below 200 is medically considered AIDS, and my viral load was at 106,000. And to give you and idea of where I am now, my T-cells hover between 600 and 800 with my viral load being undetectable. I can still see the regret in the doctor’s face when she told me. I can still feel the “what do we do now” feeling as I sat there. The months that followed were endless tests, enough needle pricks to turn my arms black and blue, questions from everyone possible, counselling every single person I told, and learning to live as a statistic.
Over the 20-years I have learned that some friends were mad at me for not telling them first about my diagnosis, that I regret telling my family (and that’s one of the very few regrets I have in life), that gay men are the most HIV-phobic discriminating group of people out there, that everyone immediately treats you different when you tell them about your diagnosis, that the medications will give you weird side effects like being allergic to salt air by the ocean (yes I had that), and that you live in a perpetual fear of losing your medical insurance.
I have gone from 36 pills a day to just 1 pill a day and eventually one injection every 3 months starting sometime next year. The advancement in medical research is what keeps me alive and for that I am eternally grateful. When I maxed out an entire class of HIV medication because I had grown resistance to them all, I realized that my mortality was not a fantasy but a harsh reality. That this virus will eventually kill me; and save the “oh you don’t know that” because I just do. I am at peace with it and at the same time it scares the fucking hell out of me.
The above photo is from “AIDS: A Turning Point” on NPR @ http://www.npr.org/series/156379460/aids-a-turning-point.
In the beginning I supported the AIDS Walks and AIDS charities because I believed in them. But now I can’t. A lot of these “fundraisers” do do good but the companies that help create them take a rather large cut; did you know that the AIDS Walks in Los Angeles and New York pay 37.5% each to the one production company that puts them on? If you want to help out, always donate directly to the charity and don’t feed into the marketing bullshit that is put out there.
Over the years my disdain towards gay men has gone from barely there to completely full-blown daily aggravation. To the point where I refer to them as “the gays” which to some comes off as derogatory. Do I care? No. Why? In my experience with this virus and the gays, I have experienced some of the absolute worst discrimination possible. From being belittled by a screaming faggot in public, to those that physically recoil backwards away from me as if I’m a leper. I’ve seen the gays rally at these AIDS “fundraisers” only to see them later say they would never date nor want to be around someone with HIV. And yes I have seen that particular one several times over the years. I just don’t relate to the gays anymore and just find them to be a vile existence of waste. Just like the stupid they are better off dead. And before you start your own soapbox of “well, but…”, first I don’t care what you have to say until you have lived specifically in my shoes, and secondly not all gays are bad; just 99.9% of them. You speak the truth and people get so bent out of shape, but it’s those same people that are the hypocrites and discriminators in the first place.
I have been fortunate to not have my looks completely washed away by the medications over the past 2 decades. But yes, my looks have suffered. I battle every day the slight gauntness my cheeks have by applying face cream that helps to somewhat generate the skin cells. It’s just enough to keep me from looking like “that” type of HIV patient. It’s hard to tell if the medications have affected my weight considering I have battled suicidal depression over the past several years, and we know that depression really messes with the body. As I keep the current workouts going I’ll know by the end of the year if it’s just in my head with the medications affecting my body.
I live in constant anger. I live in constant fear. I live in constant hope. I live in constant reality. I live in a constant state of being alone. At this point I know that I will never find another person to settle with and for the most part I am OK with it. The Man With The Pegasus Tattoo walked into my life when I was being destroyed by the gays’ HIV-phobia and he gave me so much hope and love that it changed me drastically. But in the end he was just a self-involved liar and I had to wait 15-years to learn that. Closure is good but shit it takes a long time. And the Nordic Viking accepts me as me and nothing else. Truthfully we both knew we could never be in a relationship in the romantic way, but we could in the friendship way. And yes he is still around, I just do not talk about him anymore because I got tired of people’s looks, thoughts, opinions, and judgments. Some say that I should put it out in the universe likes it’s some fucking cosmic cash machine to get a relationship, but I do not believe in that stupidity. There is a much larger reason for why things happen the way they happen and I have had this proven belief since I was a child. Sometimes I just know things without explanation.
So where do I go now? I am officially a long-term survivor. I am another statistic. I am still fucking here. The medications will constantly improve and diverse giving me more chances to make it through another year. But it’s my mind, body and soul that take the toll of everything. And that is a new balance I have to work on. I don’t want to be 66 and be in the same state of constant anger and fear that I am in now. It’s fucking exhausting. Yet is there a way to really trust again since that is the core of everything for me?
Here’s to me for making it this far. Here’s to those for making it through the day. Here’s to all of us for making it even when we don’t think it’s possible.
My name is Craig Mingus, I have HIV and I am a long-term survivor.