Right now might not be the best time for me to write a column for PositiveLite.com. September 6th is the seven year anniversary of the death of a man I loved very much. As such every year I find myself, around now, focused on a deep sense of melancholy and reflection.
John died after three months in the hospital, from AIDS. He had been a long term survivor and had, ultimately, run the course of his ability to deal with the disease. Stopping medications for over a year his system eventually failed and it wasn’t pretty.
A lot of the time recently I’ve been wondering about this apparent, to me, dichotomy between lived experience and that of the initiatives, programs and slogan-bound activism of today. If I were to take things on a face value, examining the messages for content and what they directly reference, you’d think ARV medications solve every problem of the human condition.
Because ultimately this is a disease in humans. Which means that like any other disease it is mitigated, altered and made much more complex by the variables of being a human on this planet.
Study after study, over the years, has shown us that we need stable housing, stable social networks and if addictions are in our lives we need to address them as well. In today’s circle of storytelling that we provide ourselves around HIV, no longer AIDS, the narrative of these components gets short shift.
If some messages are to be believed community viral load drives the disease; if we get it low enough it will hinder transmission. Without addressing the incredibly complex set of components to getting a community viral load down, we’ve pretty much left out the direct and open conversation about prevention of getting the disease in the first place. We’ve also left out the reality that simply aiming for a singular aspect of this disease doesn’t fix the others, which HIV is dependent upon.
Is an ARV pill going to provide a home for some one to live in, to take that pill? Is an ARV pill going to help provide the support at home that people need? Is an ARV pill going to help addictions? Is it going to solve any other issue than viral load?
"Tolerated doesn’t mean it’s perfect. Made “manageable” doesn’t mean it has no effect whatsoever."
And circling back to John, I have to wonder… do people really think that even with the better formulations and newer “better tolerated” drugs that no one, ever, is going to eventually be affected by this disease? Tolerated doesn’t mean it’s perfect. Made “manageable” doesn’t mean it has no effect whatsoever. Dialogues that like to brush past these points tire me far more than the disease itself does, some days.
As much as I know I have funny stories and anecdotes to tell, that I have much lighter subjects to mine for entertainment, there is a point right now where I look around and wonder where did these conversations go? North America is not the whole of the world, nor is the disease in an urban setting here the same as it is in a suburban or rural setting. Let alone outside of a developed country.
I could, in fact, write pages upon pages of the various components that even in my own limited life I’ve seen effect the progression of the disease, no - the actual lives of people I know. And I could endlessly bemoan how they seem to be missing more and more from conversations as we drive ourselves toward this “a pill will fix it” future.
I suppose in some ways I’m still remembering the days, which still exist, of “a pill, then a pill for that pill, then a pill for the pills for the pills”. I’d hope we understood that lesson.
Or maybe I’m just being somewhat maudlin right now.
Watch this space for something a little lighter, next time. Promise.