Under Two Hundred
All The Invisible Lines in The World of AIDS
I write articles in my mind while I am swimming laps. Unlike the water, where I can only draw imaginary lines, I often embed the lines that begin in my imagination in concrete in my life. No lines surprise me as much as the ones I cross back and forth in the world of AIDS.
I'll never forget when I was diagnosed. It was late 1986. Everything was kind of fuzzy except for my search to make myself an exception. That was my first exposure to the lines that separated people with AIDS in 1986. Early in the epidemic HIV-infected individuals fell into one of three categories: the first line was the one crossed after taking the antibody test (if you were asymptomatic you stayed at that first crossroad); the second line was signified by a low T-cell count, shingles and about with pneumocystis carinii pneumonia (PCP) that welcomed you to the wonderful world of AIDS-Related Complex (ARC); and the third and fateful line that nobody wanted to venture past was the world of the opportunistic infection and fewer than two hundred T-cells (an existence punctuated by fevers, Kaposi's Sarcoma [KS] lesions, Mycobacterium avium complex [MAI], Cytomegalovirus [CMV], Meningitis, and the endless list accompanying a full-blown AIDS diagnosis).
I wanted to stay in front of the under 200 T-cells line (like many others with HIV). From early on, the ever-present T-cell Inquisition persisted. Despite my best efforts to feign their unimportance, I secretly hungered for more of them; and as long as we had some, we monitored them carefully. Of course, the physical data that preoccupies me today is my viral load number.
In the past, before I even got into the medical implications, I first had to face being defined by my route of infection. Those lines were the ones society had carefully engraved into the minds of Americans. Back then, there were the guilty and the innocent. The guilty fell into two major categories: gays and intravenous drug users (IVDUs). Sometimes the line was rather fine according to who was defining it. The relatively innocent were the partners of IVDUs. The truly innocent were their children, hemophiliacs, and transfusion receivers; that is, of course, if they weren't concurrently gay or an IVDU. Women were virtually invisible in the early years of the epidemic. With no drug trials or accurate criteria to diagnose us, we died leaving trails of weeping children, families, and loved ones. And so the lines were drawn; but we crossed the lines to find each other anyway.
Then I drew my own lines: lines etched by fear. I continued along with my life, secretly hoping not to cross any new lines. I began writing articles about how people living with HIV need to focus on our likenesses, not our differences, while desperately praying and looking for ways that I was different from those who had neuropathy, dementia, CMV, MAI, shingles, KS, PCP, etc. Once again, I wanted to separate myself from the rest of humanity -- especially the less than physically perfect.
Anyway, I fought the good fight, trampling from one gay meeting to the next reminding them of their obligation to share their community's wealth of information and experience with IVDUs and the rest of humanity that was suffering with this virus.
Inside my support groups I was still drawing invisible lines. There was the "under 200" club, those who had less than 200 T-cells. There were those who were quitting their jobs. There were those who were on public assistance. There were those who would never have sex again. Though I kept my distance, I had an ever-pervasive and haunting secret. One day, I too would cross some of the inevitable lines and join my brethren. Though I kept a mighty front, standing side-by-side with Maryann Williamson, proclaiming the power of love and the inevitable triumph of the spirit, fear halted every breath I inhaled and bullied its way into every waking thought. It even invaded my dreams, though I slept fitfully, at best.
Years later, it suddenly occurred to me that I actually might never get sick. I responded with a reserved optimism, a kind of cautious yet legitimate hallelujah. With most of the AIDS visionaries long gone, and the AIDS industry transformed into one of the ugliest, most spiritually vacuous, morally bankrupt, capitalistic, corrupt, and divisive industries I have ever witnessed, I knew it was not a battle I could fight much longer. Despite my rage at the New York Times Magazine which triumphantly declared the end of AIDS, I was secretly grateful for the respite. It had been 11 years since my mind had taken a vacation, not to mention my ego-directed ever-present fear. I decided that perhaps it was okay to let down my guard, to think in terms of a future, to make AIDS the second item on my pursuing-a-relationship list.
I decided to cross the next indelibly etched line -- the viral load test -- my second one. The previous one showed I had an undetectable viral load. The results came in, and I not only had a detectable viral load, but a rather hefty one at that. Oh well, no rest for the weary. Back to the grind. Back to the old drawing board in the mind.
I guess I'll have to rise to the occasion at least one more time as the lines between you, and me, and us blur.
This article was provided by Body Positive. It is a part of the publication Body Positive.