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.

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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.

Two Roads Diverged…

I got a text from a friend earlier. “Where are you,” it read. I laughed to myself as I read it and wondered for a moment whether she meant literally or existentially. I wondered because the question could be taken either way. If she meant it literally, then I was (and am) sitting at a desk in an outrageously overpriced hotel in the great city of Boston. Its rooms are hardly reflective of the exorbitant cost, but its relative proximity to Fenway Park command it, I suppose. If she meant it existentially, well, then I was (and am) in the ninth circle of my own private Idaho. Damn. That metaphor worked better when I whispered to myself. Where I am is in my head. And it’s a fucking jungle in here.

Had the question been asked last night, the answer would have been altogether different. Last night, I communed, quite literally, with the dead. I spent several hours at my grandmother’s graveside, propped up against her headstone, talking endlessly about nothing. Not nothing, I suppose. Rather, everything. Everything I couldn’t talk to her about when she was alive. Everything I can’t bring myself to say aloud to anyone with a, you know, pulse. Don’t worry, she didn’t answer me back. I’m not completely delusional. Still, I felt a modicum of comfort sitting there. I’d planned on leaving after I poured my heart out to her. Instead I laid down and just fell asleep. It was a brief slumber, but a fairly peaceful one.

A week or so ago I tweeted the following Erich Fromme quote: “To die is poignantly bitter; the idea of having to die without having lived is unbearable.” Those words resonated with me. I quoted Fromme, and then wrote my own [expanded upon] version of his thoughts: The courage to love is what sustains me now. But if I don’t live to be old, don’t think that I couldn’t have made something out of my life. My only regret is that I will die without having left my mark. At 18 I was prepared to take on the world, to suck all the marrow out of life. Now I just want to hold onto it for a while. I just wish the fear would go away.

Two roads diverged. Which will I take? I’ve no idea, really. I don’t know much, but here’s what I do know: So far I’ve been given 39 years, 8 months,  11 days, 19 hours, and some odd minutes to make something of a life I don’t understand in a world I don’t comprehend. I’ve spent a lot of time questioning my existence. I’ve also spent a lot of time in awe at the world around me and for that I am grateful. I think maybe our reward for putting up with all the other crap is all that having a heart, mind, and soul brings with it. I have been alive to see the sun rise and set roughly 14,486 times; I have stood at the edge of the ocean, looking out into the seeming abyss, and stared with wonder at its vast beauty and mystery; I have read words by poets that have touched my soul, and listened to music that has, at times, moved me to tears; I have felt love and hate, and I have tried to understand the dynamics of both; I have known despair as well as joy, and have tried to live my life with some sense of purpose. I have often struggled to find that purpose, but I have never denied its ultimate existence. Now, in the face of a decision that I’m not sure I have the right to make, I want desperately to understand that purpose once and for all. Only my heart and my God can help me with that one.

Two roads diverged. It’s time to pick a path. But for right now, I have 23 days sober. And I have today. I can’t ask for more than that.

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.

Terror, Revisited

I’m pretty sure I have an ulcer. The pain that has me doubled over radiates deep in my abdomen and leaves me nearly breathless at times. Nauseous almost constantly. I hate it. But usually I can will it away. Not so much will it away, really, as ignore it until whatever I’m doing at the moment distracts me enough to trick my brain into believing there’s nothing going on. That works most of the time. A fistful of Tums doesn’t hurt either. Not so long ago that would have been a fistful of Xanax and the pain that may be a physical reality would have been replaced by the warm and fuzzies that take over as those pills slid down my throat and worked their magic. Follow that with a vodka chaser and I was good for days. Too much to lose if I succumb to that remedy tonight. I know that. Still, the pain this night is as real as ever and I need to purge all these thoughts that are choking me tonight.

I hardly know where to start. It’s been overwhelming. I guess from A to Z. Beginning to end. Only not really. Easiest to most difficult. No. That doesn’t work either. How about I just start then?

I experienced my great crisis in my early twenties. Well, I guess it started earlier, but surely it culminated and became defining then. At that moment in my life I had reached the edge of madness; from that point on my life became an unending desert…a Faustian nightmare…and I began to see the world as a jungle, one in which I was perpetually unable to protect myself. The repercussions of that year, of that very night, have reached far and keep me bound still in their unyielding stranglehold. It is all drawn out so woefully. And there remains only the great solitude in the shadow of memory.

I survived that night to be sure. But I am vulnerable to the continual relapse that has me on the verge of terror or in fear of madness. I retreat then to the safety of the blank page before me. It is my valley of death which I traverse, the dark interval during which I lose my relation with the cosmos. It is the time of the Assassins. I no longer “vibrate with exultation,” as young Rimbaud said. I writhe and squirm with fear ad uncertainty. And it has brought me to this very place. This place where I now find myself laying bare my soul to the anonymous Reader, opening the wound and letting the blood flow. The blood. The virulent blood running, wreaking havoc though my veins. I find myself relaying to no one the truth of who I was then, the end of my life as it was, and the beginning of this journey that has haunted me for so many years.

It’s taken all my energy. I don’t have the strength, physically or otherwise, to fight it off. It has robbed me of sleep again and again and has finally landed me here.  Too afraid to close my eyes, too tired to keep them open. A crossroads. The stuff is so vague. In case. And did you know that. There is. And. Wait. Not. No. Sure. But maybe. And endless stream of consciousness. Or incessant babble. I’m tired. And weary.

This post hasn’t gone where I expected it to go. It hasn’t gone anywhere actually. Still, I’m loath to scrap it altogether. It’s what came out. It is what it is. I’m still trying to wrap my head around the happenings of the last few weeks. The last few months, really. I’m trying to establish a timeline of the insanity, but I’ve killed several million brain cells via my indulgence in this substance or that recently, and it’s only coming back in dribs and drabs.

I’ll try to make sense of it all later. Right now I need tea. It’s going to be a long night.

All in the Family…

Well, it’s official. Addiction has finally decimated my entire family. I spent the day with my grandfather. My grandfather, who wants nothing more than to make it to his 90th birthday in December, but whose cancer is spreading wildly throughout his body, making that goal less and less likely to be achieved. It’s gone from his lungs to his bones and his brain. Just like it did with my grandmother. The difference is he’s in a lot of pain. She, thank God, never was. I sat with him today, as I did with her at the end, holding hands and just being in the moment. I put the morphine under his tongue when I sensed he needed it, though his pride prevented him from actually asking for it. He’s out of it enough that he failed to notice my own physical limitations. My slurred, halted speech and impaired mobility. He fell in and out of sleep. While he slept I did what I could to pick up around the house. I did his laundry and put fresh sheets on his hospital bed. I emptied the two urinals that sat by the chair where he slept. I tossed old food from the fridge, food that’s gone to waste because he’s no longer able to eat it. And I cleared the kitchen and dining room of all the empty alcohol bottles. I’m sure some of the older ones were his. Most were my uncle’s or my cousin’s. It was just my grandfather and me today. I had been afraid I’d run into someone else but I couldn’t put off seeing him any longer. His time is running out.
I wanted to take a long sweet sip from the full bottles that remained. I wanted to feel the burn as it slid down my throat. I didn’t want to stop until I was numb to all that surrounded me. I didn’t. But I wanted to. The nurse came around 7:00. It was time for me to go. I hugged him tightly. I could hear the rattle in his lungs. His lips had a blue hue to them, though he’s on continuous oxygen. He struggles for each breath. Still, he was warm. And I settled into the familiar embrace for longer than I expected. Both our cheeks were damp with tears as I lifted myself up. I swallowed a sob, told him I loved him, and said I’d be back. I don’t think either of us is entirely sure we’ll see each other again. I felt the familiar heartache.
I left and immediately had to switch my mind from heartache to determination. I took the long cab ride to the hotel in the city that will serve as my home until I accomplish what I came here to do. As I write this I’m waiting for a cab to take me to a place I shouldn’t be going. I wouldn’t be going, but for the fact that I have to go find my cousin who I quite literally just found out today has a raging drug problem and has been stealing and borrowing money from everyone she knows, including me. Ten thousand dollars in 5 months. Ten grand. Five months. My cousin. What the fuck. I sure as hell can’t judge. However, she’s been stealing our dying grandfather’s pain meds. Time to get involved. She was the last best hope for this fucking family. The one I thought escaped. She was in nursing school. She’s not any more apparently. Her sister, who hasn’t spoken to me since our grandmother died, texted me and asked me to go look for her. Guess she figured I’d know the seediest placed to look. She’s not wrong. There’s a warrant out for my cousin’s arrest. I should probably just let them do this. But I can’t. I just hope we don’t both fall tonight.