My neck is tight with the tension that comes with sitting at the keyboard, trying not to let the words take you over.
Secrets have always been part of my life. Cautious restraint has always dictated the levels to which I am allowed to engage in any social relationship. This was never truer than after I was diagnosed with HIV. The mirror has two faces indeed. And I simply cannot find it in myself to justify the chasm that lies therein, between the two divergent paths.
In the days after the diagnosis I found myself sinking deeper and deeper into despair but not only could I not do anything about it, I didn’t want to do anything about it. Perhaps I was unconsciously willing it to consume me. Eventually I put the whole thing out of my head. Better not to think about it, not to deal with the reality of the situation. Now all of a sudden I have to deal with it again. Feeling sick, being afraid people will find out, wondering if I’m going to have the energy when I wake up in the morning to do what needs to be done.
My first journal entry, written 2 months after the diagnosis, reads thusly:
“The face of AIDS is blank, its voice unheard. Human beings are dying and still people turn their heads. Those who suffer must fight because who else will? It is the victims of the disease who stand up, raise their voices, and make themselves heard. If you listen closely, just beneath their screams for justice, you will hear their cries and you will see their tears–the same tears that healthy people are afraid to touch for fear of contamination. No one is afraid to touch a cancer patient. Why is it different with AIDS? I need to be held, too.”
It’s the first and last mention of the disease. And now it’s all coming back to me. Suddenly I feel very alone.
The nightmares I’m having lately are the same ones that plagued me as a child. God, how I loathed being a kid at times. I felt I had no control over the things that happened in my life. I couldn’t wait to grow up. I realize now that was a fantasy. I have little more control over the thing that happen in my life now than I did when I was 8. But at the very least I thought I’d be rid of these childhood demons.
When I was in the hospital recently I was reminded that this was the 30th anniversary of the AIDS epidemic. I had some thoughts on that.
The fire of the AIDS epidemic rages on and it was fueled from the very beginning by several nasty factors: fear, ignorance, indifference, and selfishness.
I look back with amazement at how the political leaders in Washington refused even to publicly speak of the plague for the first 6 years of its existence. Scientists fought over whom discovered what first. And the public’s apathy grew as the body count among the gay population soared. Thirty years later and there’s no real end in sight. Humanity just succeeded in destroying itself. How did we let it get this far?
I was 9 in 1981 when AIDS made its presence known. Far too young to understand the enormity of the impending calamity, but old enough to be aware that it was being talked about a lot. I vaguely remember hearing about a gay cancer, and I don’t ever remember it being called GRID. But slowly news of this new disease called AIDS made it way into my young world and became a part of my life, first at a distance and later as a devastating reality.
I was 13 when Ryan White, who was the same age, was thrust into the national spotlight with his fight to remain in school. I was more socially aware by then, and certainly after 4 years of news on the epidemic I was slightly more knowledgeable about its consequences. By now I was aware that AIDS was fatal and it was most often associated with what was deemed “immoral” behavior: homosexuality, drug use, promiscuity. Good and decent people didn’t get AIDS. It was talked about in hushed tones and evoked levels of fear and shame that ought never to be associated with simply being sick. People were judged, and as bad as the physical consequences of the disease were the social ones. Secrecy and denial reigned. And all the while, AIDS was getting the upper hand.
Ryan White died in 1990. I graduated high school that year. He would have graduated that year as well if he had lived just a little longer. It was Ryan’s death from AIDS that I can point to as the turning point for my generation. Having someone our own age die from this disease that had been raging for 9 years was a powerful reminder that we were not invincible. I was 18. I had gone through 4 years of high school without a single mention from the people whose duty it was to guide us into adulthood about safe sex, about protection against AIDS and STDs, about what AIDS really was. It was the old “us and them” mentality. Safe from the deviant behavior of “them,” we remained in our little suburban utopia at arm’s length from the ravages of AIDS. So why teach about it? AIDS education did not exist at my school back then. Believe it or not, 20 years later, the fight continues to bring AIDS education to that school.
I entered college without ever giving the disease much though after the emotion of Ryan White’s death subsided. I was young and healthy and my life was just beginning. Sadly, the apathy that ran–and runs–rampant in our society left me believing that while AIDS was a tragedy of unspeakable measure, it would never really directly affect my life. Over the years, I entered into a few debates with my peers regarding the social implications of the disease. My liberal tendencies and my close friendships with several gay and lesbian people led to more than a few heated arguments against the belief that AIDS could ever be considered a punishment of some sort and that those who got it deserved it. Not to mention my belief in a just and loving God. The horror of AIDS was humanity’s problem; not one specific segment of humanity, all of humanity.
So, while these types of discussions occasionally surfaced during the course of my college career, AIDS was still not a predominant theme in my life. Usually these discussions came about when someone of import passed away from the disease. A pop culture icon that those in my generation could relate to on some inane level. This was never truer than with the death of Robert Reed, who played Mike Brady on The Brady Bunch. The man we grew up knowing as the father of America was gay, got AIDS, and died. You can imagine the firestorm of controversy this brought with it among those of Generation X.
And history was made–for a lot of reasons–when MTV’s The Real World featured Pedro Zamora, a 22-year-old man with AIDS in 1994. I remember watching the show and being astounded by his courage at such a young age. Pedro passed away 4 months before I was even diagnosed. I had no idea as I watched him on my TV screen that he would become such a personal hero to me one day.
Still, aside from the philosophical discussions about the disease among my peers, AIDS was held at bay. It drifted in and out of our collective consciousness, but never made it beyond the periphery of our lives. Already in our late teens and twenties, the disease had yet to penetrate our core and attack one of us directly. Silently we counted our blessings as we remained beyond the reach of the scourge. Publicly we never gave it a thought. Ours were lives full of promise and hope. AIDS had no place among us.
I was in my early twenties when I had to face my own mortality, or at least the idea of my own mortality. At that age I had rarely thought of such things. Then one day I collapsed outside a restaurant and suddenly I was faced with a whole new reality. I had had an idea, of course. I’d heard rumors that the man who had raped me years earlier had AIDS. Still, until that day I had managed to pretend my way into a normal life.
When I was first diagnosed, I got angry. I got really angry. I struggled with my faith and I often found myself questioning God. Eventually, with the help of those God placed in my path to take this journey with me, I chose life. By that I mean I chose to accept that I was living with HIV and not dying from it, and I decided to stop using the illness as an excuse to remain indifferent.
I’m 39 now, and I’ve only told a handful of people about my diagnosis. I’m free to write about it here because blogging offers me a cloak of anonymity that brings with it comfort and strength that I otherwise do not possess. The fear and shame that I so long ago argued should not surround an illness haunt me now. And I am not yet strong enough in myself to stand up against it. I am afraid to tell people because I am afraid of their reactions. So I fight my battles with the aid of the few who know.
My status changed recently. I went from being HIV-positive to having full-blown AIDS. I let this happen. I chose life once. But over the last 18 months, I have not been as committed to that choice. I have, to be honest, dared the disease to come and get me. And get me it has. I quit taking my meds. I drank. I used. I don’t sleep enough. I don’t eat well. I have self-destructed this last year and a half and it has landed me here, with a nearly non-existent T-cell count and a viral load through the roof. Night sweats, seizures, agonizing stomach cramps. This is my reality right now. It’s time for me to make another choice.
When people find out about my diagnosis, inevitably one of the first questions out of their mouths is “How did you get it?” I’m offended by the question. Does it matter? Do I not deserve the disease because I was raped? That does not put me in a different category than those who got it any other way. The disease is not a punishment for immoral behavior. It’s just a disease. A God awful, nasty, horrifying virus that ignores the boundaries of social status, wealth, gender, and sexuality.
“Let us not look back in anger or forward in fear, but around in awareness.” AIDS is not over. But someday it will be. And whether or not I’m around to see that day, I will do my best while I can to lift the veil of shame that casts its shadow over the faces of those affected. By raising awareness we ensure that those who went before us did not die in vain.
I’m inspired by those who lift their voices against this disease. They will always have my gratitude because long before I started fighting this battle, they were already fighting for me. And someday they will be the saviors who spared the lives of countless victims yet unnamed.
Let not one more ask, “Who will carry my torch?” Shared among the fellowship of humanity, such a burden is made light.