Some Comfort. Some Solace.

December 1st. Today is World AIDS Day. I’ve no idea when this started or really what the hell it all means. I suppose it’s meant to be a day of awareness, perhaps compassion, education, etc. For the last 10 years I’ve attended an interfaith healing service on December 1. Similar services are held all over, but the one I attend is at an Episcopal church down the road from where I went to college. It’s a small church, but very active. I went there for a year or so while I was in school. I’m not Episcopalian, but I like to keep my options open. I was raised Catholic, but I defected when I was in my early teens and converted to Lutheranism. Over the years I’ve dipped my toe in many religions and traditions. Because really, how can I make an informed decision without knowing all the players? And what I’ve discovered is that I don’t want to be pigeonholed. I’m all about ecumenicalism. I joined some friends at the local synagogue for 2 years after reading the works of Rebbe Menachem Schneerson. Absolutely inspirational, that guy. I even frequented a Buddhist temple for a while. Because really? Monks? How bad-ass are they? Catholic monks are fine with their Gregorian chants and all, but Buddhist monks with their Shaolin martial arts? Yeah, they rock.

Anyway. The healing service. I’ve been going for 10 years. It has little to do with physical healing. I mean no one expects their T-cells to miraculously increase after getting hands laid on them or anything. It has much more to do with spiritual and emotional healing. For me, it’s always been a powerful fellowship. It’s a draining experience. Very emotional. The sermon usually revolves around educating on the disease; the emotion comes in with the laying on of hands. I’ve always found this practice to be especially extraordinary. I really have. The first couple of years I refused to go up and experience it. I stayed in the pew, head bowed, praying for those courageous enough to partake in the practice. A friend convinced me several years in to go up and just give myself over to it. I made my way slowly to the front and sat in the middle of a group of 5 or 6 ministers and lay people whose sole purpose at that moment was to make me feel human and to take on some of the pain. They asked if I was HIV positive and I said yes. I think it was the first time I had ever said it aloud. They put their hands on me—not something I’m usually comfortable with—and prayed. Hard as I tried, I couldn’t stop the tears. Sobs racked my body as these complete strangers embraced me without fear, without judgment, and prayed for me. I’d never before—or since—felt such loving contact. My grandmother was the only other person in my life who made me feel that I was worth loving. Had I ever been brave enough to tell her about my diagnosis before her death several years ago she would not have hesitated to wrap me a loving embrace. I’m sure of it. I wish I’d been brave enough. God I miss just being held.

So I went to the service tonight. I didn’t really want to go out. I haven’t been feeling well, and my lungs are still pretty messed up. Each inhalation of breath is accompanied by painful coughs and spasms. The last thing I wanted to do was bundle up against the cold and ride in the back of a cab for an hour to go to this service. But I did because I had to. I’m glad I went. I walked with some trepidation to the front of the church to receive the laying on of hands, and it was as powerful this time as in times past. This service was a little bittersweet. One of the men who runs the service became a good friend of mine over the years. Peter Jacobs was his name. Hell of a nice guy. He passed away 3 weeks ago. His absence was palpable and devastating. But his presence was felt in a far greater way. And that, I suppose, is where faith comes in.

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The Mirror Has Two Faces

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.

AND THEN…

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.

NOW…

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.

Winds of Change…

I woke up because the blinds were knocking back and forth in the open window. It was grey and dim because it was all cloudy outside. I had dark green sheets on my bed, but in that light they looked different. Even the braided ficus in the corner of my bedroom looked droopy and depressed. It was one of those days that threaten rain without making good on it.

I did my usual: I shuffled to the kitchen to get something to drink, and I punched the time button on the phone so I could check the time without having to un-squint my eyes. The phone said it was  “Nine. Fifteen. AM.” in its recorded chip voice. Damn, I thought, it’s late.

Then, Why do I have a headache?

Right. It was all coming back to me.

The needle tore into my skin roughly because I couldn’t control my movement well enough. I went too deep into the vein and it bled. The pain felt good, mixed with the rush. I closed my eyes and let the pain wash over me, something new to focus on. I went searching then for what I knew I had hidden somewhere in the house. I searched until I remembered the door behind my bedroom closet, lined with shoes and purses and coats. I threw them aside and forced open the locked door. A single bottle, but full, still sealed. I unscrewed the top quite unceremoniously and put the bottle to my lips. Then I hesitated. I thought briefly that there may be no going back once that warm liquid slid down my throat. The thought caused both my heart and my breathing to quicken and I started to sweat. I held the bottle there for just a minute longer and then started pouring its contents greedily down my throat. The familiar burn was like the touch of an old friend, unafraid, unashamed.

The double shot of vodka went down sweet and warm and scratchy, which was a little to the left of where I wanted it to be. Don’t you hate indulging in something without really thinking about it? You get all guilty and stuff, and sometimes you get a little sick.

Days like that slip into sinister faster than morning blinks. Especially when you take a hit you didn’t expect. I took a hit. A couple of days later I was in the hospital. That was almost a month ago. If not for the pneumonia that landed me there, I’m not at all sure I’d be here to write this out tonight.  I took a hit. It’s time to haul my ass off the mat.

I have 26 days sober today.

The One In Which My Doctor’s Good Intentions Will Kill Me…

I had an appointment with my doctor this morning. I don’t know if my doctor doesn’t understand the concept of addiction or what, but I came home with prescriptions for pain meds AND anti-anxiety meds. And — here’s the kicker — a casual mention that marijuana (she actually whispered the word) sometimes eases nausea. I’m pretty sure my doc just advised me to blaze up a doobie to deal with my stomach issues. Interesting. Hot tea and ginger ale have been making it bearable for now.

I’m seriously surrounded by cartoon characters.

I ripped the prescriptions up, by the way. I’m not taking any chances. I’m 24 days clean and sober today.

Death…

I’ve been thinking about death a lot. It’s consumed me this week. The recent death of my cousin, the impending 1-year anniversary of my best friend’s death, my grandfather’s current slow demise from lung cancer, and finally, the virus that courses through my own veins. I’ve tried to commit lately to being grateful for each day, to living as well as I can, to not focusing on the fear and the darkness. It’s just that when the fear does seep in, the sadness, the loneliness…in the midst of the maelstrom, it all just seems so…I don’t know…overwhelming?

The problem is, when I sink into this place it releases the floodgates on things long repressed. Of course. Naturally. It’s the endless loop of torment that then plays over and over, trying to convince me that I’m less than. The loss. Of others. My own. And…I’m 8 fucking years old again. Is it always going to go back to that? The loss is always tied to abandonment, isn’t it? Or rage. Or fear. I suppose it doesn’t really matter. In the end, it’s just the loss and it leaves me quite empty and broken-hearted.

There’s really no way to prepare for such misery. Just pray that it passes quickly enough. It always passes, and if I can keep the madness at bay long enough for it not to consume me then hopefully I’ll be looking back on these words soon and wondering what the big deal was.

I’ve been writing a lot lately. The other thing that’s consumed me. For better or for worse. I’ll share some of it in these pages soon. I’ve needed time to wrap my head around some things before I shared. Forgive my absence, my silence, those of you who’ve written, commented, tweeted, etc. Please know I appreciate your good thoughts, your prayers, your support. I’m working my way out of the darkness. I’m trying.

Ruminations on the Nature of Things…

I’m starting to lose myself. Even as I creep slowly back to awareness, back to consciousness after these last dizzying 6 weeks, as the reality sets in and I’m brought back around to this realm from the one in which I’ve been ensconced, even now I’m not sure what’s real and what’s not. I’ve been faking my way through the last 6 weeks, but now, finally, it’s all catching up with me. The armor of strength I feigned to avoid the inevitable breakdown has become a mere shadow, taunting me as I struggle to hold onto it. Where once there was strength, now sorrow and despair have sunk in and have me in a stranglehold that makes it difficult to breathe as I come to terms with it all. How desperately I long to be numb once again, to not have to feel.

The only difference between now and 6 weeks ago is thus: I was haunted by different things 6 weeks ago, only then the terror tended to vanish to the bottom of a glass, becoming more abstract, less threatening. I’ve not used since the day before I had the stroke. It’s not that I don’t want to use. Quite the opposite is true, in fact. As the days continue to slide into one another, I want nothing more than to drown any coherent thoughts I have in absinthe and despair. But I can’t. I will die if I do that.

But how I want to pour a shot. I want to swallow a bottle of Valium and chase it with a bottle of rum. I want to grab the sharpest blade I can find and run it hard against my skin to cause myself physical pain to distract me from the emotional anguish of what is happening around me. But I can’t. I can’t move.

I wrote about memories this morning. And grief. It was more of a yell than a thought, but the process was somewhat cathartic. I expressed my rage and lightning didn’t strike. So there’s that…

Whispers in the Wind…

Last night around, oh, I don’t know, 2:00 in the morning, I suddenly needed very badly to talk to someone. I had just returned from taking a short walk. It was an interesting walk. I suppose it was in the 40s, but what with the wind and all, who knows how cold it really was. I tell you, though, there’s nothing like being out there that late at night while the world around you sleeps. The wind tried to snatch my hat away, settling instead for making me gasp when it blew into my face. I walked through it all, drinking deeply from and keeping warm with a thermos full of tea until I was good and dead behind the eyes.

But back at the house, I sat down heavily and stared at the telephone. There were a couple of people I knew on Pacific time, but I didn’t want to think about the west coast just then. Then I remembered: Fitzy was in Colorado. Of course. A 2-hour difference wasn’t that bad. Anyway, I had a lot I wanted to say to him, and until that moment I lacked the courage I needed to do it.

His brother’s machine picked up. The outgoing message was sing-songy and annoying. I pulled the phone away from my ear until I heard the beep and then I left a rambling, incoherent message. I hate leaving messages for people. I always sound like such a tool.

I lay back on my bed, fully clothed and on top of the blankets, and covered my face with a pillow. I thought about the wind outside, how it had pushed me and made me lean into it for balance. I can tell you why we think of the wind as a living thing, if you like. It’s because it has a voice. It howls around the corners of buildings and whispers past your ears. It sighs over the ground and bustles on its way around your legs. If I thought it would tell me something I wanted to hear, I might have asked it a few things.