Red Ribbon

World AIDS Day

AIDS

I’ve mentioned a few times on my blog that I am HIV+. About two months from now, I’ll mark my 25th anniversary of finding out that I was infected with the AIDS virus. I purposefully use the word mark rather than celebrate, because there is nothing celebratory about it. Not that being alive and healthy twenty-five years after my diagnosis is a bad thing.

In fact, most days, it is a good thing.

Yet, it’s been a journey fraught with stigma, with pain, with heartbreak, with losing jobs and friends because of it. I’m now developing complications from use of some of the early drug treatments. Don’t think that I’ve got a negative attitude towards my HIV. I don’t. Ok, so maybe I don’t like my HIV, but, having survived through those early years, when everyone around me was dying from it taught me that those who were most negative and angry were the ones who died, more often than not. So, I’ve tried very hard not to wallow in self-pity, or to be angry about it — neither emotion will do anything to get rid of it, right?

There’s a part of me that’s wanted to share some of the stories of my journey through life as an HIV person, and, while I’ve written a few stories about it, I’ve not written as much as I could.

That’s going to change. One of my writing goals for 2014 is to be as open about my HIV as I have been about my struggles with depression, and with breaking my alcohol addiction (which, by the way: November 15th was my one year sober anniversary — a cause for celebration.) I want to write more about my life as a person with HIV because I’ve been reading that new cases of HIV among young people are, again, spiking upward. While we may have new drugs to treat HIV, and while HIV is now a manageable illness, much like diabetes is, it’s not a fun disease to have. Maybe knowing what its like will help someone make smarter choices and avoid infection.

And, like any writer, putting thoughts and feelings into words, sentences, paragraphs, and stories is a way to help make sense of things, to help release some of the pain. So, watch this space for more.

Until then, watch this video of some remarkable women living with HIV:

(video via Upworthy)

Dispatches From The Moon: It Was Twenty Years Ago Today

Red RibbonThose of you who’ve been actively following along will know that I’ve been cleaning up my old blogs, and reposting old posts that I think are worth keeping.  Well, I’ve also been cleaning out some old files and drawers, finding notes, scribbles, half-written stories, as well as some old typewritten journal pages.

This post is from one of those old typewritten journal pages.  It was written exactly twenty years ago, the date on the bottom reads August 29, 1993.  It’s an interesting glimpse at my mental state during a period of my life that was pretty rough.

Some background on the piece:  I was twenty-seven, I’d been HIV+ for five years (which, at that time, was a very long time to be infected and reasonably healthy).  I’d been dealing with some HIV meds that were particularly brutal — some of the newer meds aren’t quite so toxic, but, in the early days of the epidemic, the drugs, and dosages were hell.  They left people anemic, with uncontrollable diarrhea, nausea (many people struggled just to keep the pills down).  They left you weak, tired, and ripped away most of your hope.  The regimen I was on was particularly tough, and, besides creating physical problems, the drugs created problems at work — I was so ill from the drugs that I was missing time at work, and the days I did make it to work, I couldn’t work for more than a few hours at a time; it created a tough environment for those I worked with, who had to pick up the slack, and created additional stress for me as I was constantly being warned about my attendance, and threatened with being fired for missing work.

In those years, I had many conversations with fellow inhabitants on the moon, and we wondered if the drugs were worth it — was feeling that miserable worth the extra time it might give you?  The discussions were about the quality versus quantity of life.

I’m not sure any of us had an answer, though most of us stuck with the meds, and a few of us are still here, all these years later.

At the bottom of the page, you’ll find a link to an explanation of the series title, a series I started to chronicle life as an HIV+ person — not just the triumphs (like still being alive), but also the misery and hell of those early days, when no one knew if we’d live much longer.

I share this post because it’s about as raw as it can get, emotionally.  It’s not a fine, polished piece of writing (I’ve changed nothing about it, except a couple of spelling errors).  It’s a journal entry, written, as most journal entires are, as a stream-of-conscious piece of writing.  So, it might be a bit redundant, not very polished, and, you’ll find it rather emotional.  But, I think I want to share it anyway.

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I’m twenty-seven and I’m going crazy.  There is a bright side though.  Since I know that I’m going crazy, the really means I’m not, since crazy people are totally oblivious to the fact.  I suppose I should do much rejoicing, being as I’m probably not crazy, but somehow, much rejoicing seems way beyond my capabilities.  Maybe it would be better to be truly crazy, that way I could be oblivious, and I would not hurt so much inside.

I’m too young to be crazy, aren’t I?  I mean, craziness is like Alzheimer’s , or brittle bones, or hardening of the arteries; something that only happens when you pass a certain age.  Perhaps by being born, I passed that “certain age.”  Age has nothing to do with crazy, like AIDS has nothing to do with being gay.  Age and gayness just put one at higher risk.

Okay.  So I’m not too young to be crazy.  But, I’m not crazy.  So, what does that make me?  I wish I knew.  Maybe I’m just losing control.

I think that it it — losing control.  Losing control of my life, of my thoughts, of my emotions.  I’m a basket case, a nuthead, a fruitcake.  My life seems uncertain; my thoughts no longer my own; my emotions unstable.  Why?  And why should it bother me?

I’ve always been in control. Everything I’ve ever dealt with has been on my own.  I’ve been my own best-friend, my own support system, my own shoulder to cry on.  And I’ve always been strong.  Yet, I am at a point where I no longer know how to be strong.  And that scares me.  One of the few things in my life I always thought I could be sure of has been yanked out from under me.

And why do I need to be strong?  Why should I care?  Because I’m afraid that the end of my life is two steps closer than it used to be.  I’m scared.  My nights are filled with sheet-drenching sweats, my bowels seem to have taken on a life of their own.  I tire easily, and want to do nothing other than sleep.  I’m scared.

I study my face in the mirror, searching for signs.  What signs?  I do not know, but would recognize them if they were there.  I look at the veins in my arms and hands — veins that would be so easy to slice open if I ever so desired.  I pretend to be Superman with x-ray vision, gazing into my veins with hatred at something so tiny I cannot see, something tiny yet deadly.  I stare at this microscopic virus racing through my veins, and curse it with every ounce of strength I have, hoping that the curses will make it shrivel up and die.  But that will not happen.  I’m scared.

I’m losing control, and I’m fucking scared.  I want to crawl under the bed, and never come out.  I want to be locked in a room with a chair and a window — simply sit on the chair and watch the sun come up, travel across the sky, only to set again, leaving me alone in the darkness.  Only in the darkness can I not see the veins, and not be reminded that the timer of my life is running faster towards the buzzer.  Total isolation.

I have no desire to leave my house. I do not want to see or talk with anyone.  How can I be interested in the trivialities of their lives, while mine is crumbling before my eyes? How can I smile and laugh, when I have only fear inside me?  I simply want to be left alone.  Besides, being alone eliminates the possibility of trite words, because people are afraid of saying what they really feel.  being alone means I do not have to smile when I do not feel like it, or be happy just because people don’t like to see other people when they’re feeling down.  I only want to be alone, where I’ll feel safe and unafraid.

When I wake up in the night, covered in sweat, I pray to God to let me die.  But that will not happen.  God doesn’t take away your life just because you wish it.  Nor will I do anything to make my life end sooner than it’s supposed to … yet.  Even though part of me wants to die, my heart doesn’t seem to be ready to go.  Besides, I have this disease that may make me ill for a long time before I die, and ending my life would mean that no one suffered along with me.  That sounds selfish, but that is how I feel.  If I’m going to suffer, I want everyone in my life to suffer along with me.  No easy outs for anyone.

I do not know how to let go.  That is what scares me most.  I am hanging on to my self-control by a tiny strand of silk, and I know that I have to let go first, before it lets go of me.  But how?  How do I let people do the supporting of me when I only know how to support myself?  How do I cry on someone’s shoulder, when the only shoulder I’ve cried on is my own?  I need to learn, need to let go.  But how?

I’m not crazy.  I know that.  But that is how I feel.  My mind has trouble staying focused on even the simplest of things.  Maybe it would be better if I were crazy.  Then I would not know, would not hurt, would not be scared.  If I were crazy, everything would seem so much better.  Maybe I should go cut off an ear.

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Dispatches From The Moon is an ongoing series of my nearly 25-years as an HIV+ person.  For a brief introduction to the series, and the explanation of the series title, read the short post here.)

Cleaning Up The Old Blogs: Carols And Farts

(Cleaning Up The Old Blogs is a series of posts that are part of an effort to condense my collection of old blog posts, from three other separate blogs, into one place, keeping only my favorite posts. These are the original posts, with very few minor (mostly grammar, punctuation, clarity) changes.   This is a post, from my old, LiveJournal blog.  Original publication date: October 18, 2004.)

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Cleaning Up

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I’m reposting this particular old post now, in honor of my good blogging buddy, Elyse, who, after much prodding (pun, perhaps, intended) from me and a few others, shared her own fart story.  Not only did I help convince her to write her tale, I also had to go and reblog it, so I feel I owe it to her to share my own story.

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Ok. I’ll get it out of the way now: I’m a freak.

Here it is, only mid-October, and I’ve started listening to holiday music. Christmas music in October?! (I can hear the gasps of horror)

And, say I: why not?  There is no written law about the proper time to play and listen to Christmas music.

Granted, there are only 14 Christmas songs, which I suppose is half of the irritation factor for many people. But, still…there’s something fun about it. It’s always happy. Ok, so there’s “Blue Christmas”, but mostly, it’s music about family, about home, about love and joy; and, even though I’m horribly non-religious, the King Is Born Today stuff makes me smile. And, I found a web radio station that plays holiday music all the time. I’ll admit, Christmas music all the time might be a bit much, even for me. But, for the next two months at least, it will be some happy music.

I could use some happy music my life right now.

I’ve been on this new HIV medication for six months now, and every day is a fucking struggle.

Every morning, as I’m getting the pills out of the bottle, as I’m filling up a glass of water, as I’m swallowing the damn things, I keep saying to myself “This is for the best. These will keep me alive.” If taking these pills were like taking a couple of aspirin, I’d have no problem with it. I’m not a big pill person, meaning, I am not one of those people who believes pills are the answer to all of life’s ills. I’m not going to take a pill to lose 5 pounds, or any other silly little thing that you can fix yourself, with maybe a little work. I’d take a pill for my blood pressure if I couldn’t first control it with diet and exercise — the pill would be the last option, not the first. Same with cholesterol.

Too bad it’s not the same way for HIV. I can do some things to help my immune system stay healthier, but, ultimately, this little virus that has invaded my body is the Ultimate Commander of my immune system. It decides when it’s going to slow down or speed up it’s attack. I have no control over it, other than the medication. And, even the pills aren’t in complete control — they’re more like speedbumps in the bloodstream. They discourage the virus, make it tough to do the things it needs to do to replicate itself, but, the virus, like all living things, has a strong survival instinct. So, it can only be slowed down for so long, before it begins to mutate itself and become resistant to the drugs. So, really, the drugs are just a time-extension device, a way of keeping me alive longer, until, hopefully, a cure is found.

So here I am, every morning, and every evening, swallowing a couple pills that are keeping me alive, though they have the glorious side effect of  making me feel like shit all the time.

Oh joy!

I always thought that pills were supposed to make you feel better, not worse.

There’s obviously not a big market for these kinds of drugs on the party-circuit. “Hey man. I got these here little HIV pills. Pop two of these before you have to go somewhere, and I guarantee you’ll feel like you’ve been hit by a ton of bricks, and that you’ll feel like shitting your guts out the whole time you’re out.” Yeah, I can make a fortune selling these on the street.

And, if that’s not enough, there’s all the other fun side effects from prolonged use. Between the first go-round of drugs a few years ago, and this round, they’ve pretty much ruined my stomach. They irritate my stomach so much that most food bothers me, they’ve given me severe refulx, severe heartburn, that even with the max dosage of a perscription acid-reducer, I still get doubled over by heartburn and stomach cramps from acid. Really, the stomach acid pills are working:  I don’t feel like my stomach is going to burn through my skin any more. So that’s a big relief.

Then there’s my personal favorite side effect: gas. Excess stomach gas. We’re not just talking a few extra bubbles. We’re talking bubble machine kinds of bubbles. We’re talking belches, not burps. We’re talking belches that register on the richter scale.

And farts.

Lots and lots of them.

Gut-wrencheing ones.

The kind that you’d be mortified if anyone ever heard you let one rip.

Between the noise and the smell, even the cats often leave the room. It can really hurt your feelings when an animal that can lick clean it’s own stinky ass leaves the room on account of your stinky ass, glaring at you as it leaves the room, as if you’ve just committed the most heinous of acts.

Most days I feel like one of those big Macy’s Thanksgiving Day Parade balloons. I’m afraid that one of these days someone is going to bump into me, and I’m just going to explode.

And normal bowel movements? What the hell is that?? I feel like just strapping a can to my ass so I don’t have to spend so much time in the bathroom. And, working is such a joy. I mean, how much can you really fart at work? How much gas can you hold in at a time before you start feeling your chest hurt? Can you really spend alot of time in a bathroom at work? And, then there’s the joy of working at a place that only has public restrooms. I know some people have no hangups about them, but, alas, not me. Sorry. Just can’t fart when there are strangers in the bathroom. Though, to be honest, at least in a public bathroom, no one knows who smelled up the place — with employee only restrooms your fellow employees spend the rest of the day walking around, looking at each other, wondering if the other is the culprit who stunk up the whole bathroom and break room.  If there was a way to convert flatulence into a useable fuel sorce, I could make a couple thou a day. And, it’s cheap for me to produce, just costs me the $25 a month co-pay. There’s just something about your digestive system being out of whack, no matter how good the rest of your feels, when your stomach or bowels act up, it makes the rest of you feel bad too.

The past few months I’ve been having a tough time getting out of bed in the a.m. I used to just get out of bed when the alarm went off. For awhile I was changing the time of the alarm every time it went off (I have an old-fashioned alarm clock, with hands, not digial displays). So, I move the little alarm hand around, reset it for a few minutes later, and snooze. But, it was making me late. So, now I set the alarm for an hour earlier, so I can snooze and brace myself for the day. I realized that the reason I was doing this was because for that little period of time, laying there, half dozing, half awake, is the best I feel all day. Once I get up and get moving, it just gets worse. So, now, my hour in the morning is my little bit of heaven. It lets me know that I am ok, that as bad as it can get during the day, I’m still here. I’ve been healthy, and more importantly, alive, for a lot longer than I thought I would be. Almost 16 years so far. So, that little interlude of peace and physical wellbeing in the morning is what gets me through the stupid drugs during the day.

And, of course, that’s just the immediate side-effects. Long term, no one knows. I’ve got a friend who developed ostioperosis from one of them. And, it’s still a bit early for me to tell yet, but, they often make your blood-pressure go up, they often make you diabetic, they often send your cholesterol through the roof. So, that’s something else to think about. But, not something I’m going to think about tonite. Tonite, I’m ready to think about going to bed. It’s been a long evening, my stomach had been on fire all night, the cats abandoned me an hour or so ago (fortunately the candles burning keep the smell from lingering… although, I fear that one day I’m gonna let one rip with the candle buring… and BOOM!). So, I’m going to take my fussy stomach, and my stinky ass and go to bed. Because the sooner I go to bed, the sooner I can enjoy my peaceful hour of feeling well in the morning, before starting it all over again tomorrow.

Red Ribbon

Dispatches From The Moon: Four

Red RibbonTrying something new with this post: an audio version.  Click the play button to listen to this post:

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During the early days of the AIDS epidemic, there wasn’t much hope.

Sure, there was a vague idea of its cause, some even more vague ideas about how to treat it.  There wasn’t much vagueness, only certainty, about the ideas for a cure: it would be years, maybe a generation, maybe not at all.

Like all new scientific discoveries, theories abounded.  When AZT was found to slow the progression of the virus’s attack, there was a wide divergence of opinion regarding dosage: start taking it the moment you find out you’re infected; wait until your t-cells drop below a certain level; take frequent high dosages; take lower doses.  And, because there was little hope to be found elsewhere, we let ourselves be Guinea pigs, we clung to the potential promises of the pills.  Maybe they wouldn’t cure us, but, maybe they’d keep us alive longer, maybe until they finally found a cure, or, at least long enough to cross a few things off of our Bucket Lists before we went.

It wasn’t just the pharmaceutical remedies either — there were very few back then; we scoured the health food stores, talked to herbalists, looking for something, anything that would keep us alive for a few more days.  Take AZT, the scientists exclaimed!  No, take blue-green algae, take spirulina, shouted the herbalists.  Those of us who had money jetted off to various South American countries to try new treatments not performed here in the U.S.: transfusions, injections, concoctions.

Obviously, none of them worked as a cure, but, in an ironic twist, science was able to learn what treatments were ineffective, without having to do much studying — we, in our race to stay alive, did the testing for them.  They just had to watch and monitor the results.

By the time I reached my fifth year of being HIV+ (or, at least, it was my fifth year knowing) there was a theory going around — one that still has some traction to it, though, it seems to be fading in popularity.  The idea was to teach the body to fight the virus on its own: when one had a high viral load count (meaning lots of the virus in the blood — HIV multiplies in the body, so it’s not just one virus — it becomes thousands, hundreds of thousands), one took the HIV medications, which worked to slow the replication, resulting in lower viral counts; then once the viral count was below a certain level for a few months, one would stop taking the drugs.  Eventually, the viral count would creep up, and the meds would be started again.  The idea was that the body would learn to associate the high viral load with the introduction of medication, and, over time, would fight the virus on its own, without the medication.

My doctor at the time, Dr Kuhns, was (and still is), highly respected by her peers and patients for her expertise in the HIV field.  Dr Kuhns is the kind of doctor all doctors should strive to be: knowledgeable about their subject, compassionate, relatable, and willing to let their patients actively make decisions regarding their own healthcare.

My decision, when my t-cells began to drop and my viral load climbed was to start medications, and, depending on how well the medications worked for me, to practice the medication cycling.  The duration of time I would be on the medication was dependent upon my own body’s response to the medications — some people respond quicker, others required more time, and, still others found that the medications made them too sick to continue taking them.  I decided I wanted to be on the cycles of medication because it was still a new area of study in treating the virus.  From the moment I found out I was HIV+, I participated in every study that I could — from basic studies that just asked questions about my medical history and lifestyle, to studies that involved extensive interviews and required dozens of tubes of my blood to be left behind when I left the interviews.  Once I started on the drugs, I was constantly participating in studies that monitored the effects of the drugs, not just on their efficacy in fighting the virus, but, also, to determine the effects of the medications on the rest of the body.  One doesn’t want to take a drug that fights a virus, but destroys the kidneys, or liver, or heart.

I felt that since I was a part of the early group of people infected (for once, I wasn’t late for something, tardiness being a large part of my character then), that I owed it to others to do what little I could to help find a cure — or, at the very least, a vaccine.  Even though it meant ten or twelve tubes of blood every few weeks, it made me feel like an active participant in the fight against AIDS.  As an introverted person, with mild agoraphobia, I’m not a crowd person, so I’m not the kind of person to march with crowds of unknown people in rallies to raise awareness.  Giving blood, answering questions, taking a variety of medical tests — these allowed me to participate in the  research, hopefully, in a small way, giving help to all the advances in treatments that have since followed.

When the time came to actually start the medications, I’ll admit to having second, third, forth thoughts.  I knew people who were taking the drugs, and the drugs were making them sick.  I knew how toxic they were (AZT had been developed in the 1960s, to fight cancer — though it wasn’t successful).  I knew people who ended up having to stop the medication, because it made them so sick that they were unable to keep the medication down, and had to take multiple doeses, in the hope that at least some of the medication would dissolve, and enter their system before they threw it back up.  Did I want to end up like that?

Did I want to die sooner?   That was what it came down to.

Strangely, even though I pretty much contemplate suicide every day — even before the HIV, the thought of dying from it spurred me to action.  Sure, maybe I toyed with the idea of death at my own hand.  But, I didn’t want to die from AIDS.  It’s a slow, agonizing death. Not taking the drugs could be a passive form of suicide, but, who’d want to chose slow and agonizing over a quicker, less painful method?

In the 1980s, those of us who were infected, assumed our lives would be cut short.  Some were more optimistic about the chances of staying alive for awhile.  And, there were deniers — those who chose to act as if they weren’t infected, live as if they weren’t infected, refuse treatments because they didn’t believe they were infected.  But, most of us fell somewhere in between hope and denial.

So, we took what was offered and wrapped it in a flag of hope, and swallowed it with fingers crossed.

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Dispatches From The Moon is an ongoing series of my nearly 25-years as an HIV+ person.  For a brief introduction to the series, and the explanation of the series title, read the short post here.)

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Dispatches From The Moon: Three

6392051_sMy life is a series of demarcation lines, designating the periods of my life with something and the periods without something.

My brother, for example. I spent the first five years of my life as an only child. I spent the next nine years having a little brother. When he was nine, my brother left, to go live with his birth mother, and, I was again an only child. I’ve been an only child for longer than I was a sibling.

Then, there is my father. I lived the first fourteen years of my life with a father. I’ve spent the years since his death, in 1980, without him. I’ve lived most of my life as the child of a single parent.

Today marks yet another demarcation line: after today, I will have lived more of my life with HIV than I lived without it. I was a week from my twenty-third birthday when I learned that I was HIV-positive. Today is the anniversary of my test result.  I lived the first twnty-three years of my life without HIV, and, now, I’ve lived more of my life with HIV than without.

Tomorrow, I start the twenty-fifth year of my life as an HIV-positive person.

Happy Anniversary to me.

Back on that day, in 1989, I never imagined I’d be here, in 2013, writing about being a long-term HIV survivor. During the 1980s and early 1990s, there was little hope for long-term survival. One usually died, sooner, rather than later, of some horrible AIDS illness.

Back in those days, those of us dealing with HIV and AIDS, whether we were the person who was sick, or if we were a friend or loved one of someone who was infected, the future wasn’t measured in wistful thoughts of some future date.

Time was measured in moments.

Instants.

Breaths.

At any moment, one could go from being healthy, to being sick, to being dead.

During those dark days, once we came to terms with our illness (and, not everyone did come to terms with it), we tried to live a lifetime in each moment. We all knew, or had heard of someone, who was healthy one day, and then sick, and then dead within a matter of months. We all knew that our turn could arrive at any time, with little warning.

There was hope. Not much. And, not a hope that was full of certainty. It was more of a hopeful wish. A glimmer of a happy thought that maybe, just maybe, science would come up with something, anything. Perhaps, if we stayed healthy, or, if we got sick, if we could stay alive long enough, then perhaps science would be able to help us.

Some people I know never had hope. Never came to terms with their disease. They were angry, bitter. I have no proof, other than anecdote, but, all those that I knew who lived in anger and bitterness, and who were consumed with a hatred for the disease and the body that betrayed them, all those wonderful souls are long gone. When I can’t sleep at night, and thoughts of the past wander through my mind, I wonder about those rage-filled souls I once knew, and wonder if it was their anger that carried them off.

I was angry for the first month or two. Then I was terrified. Not of death. Death has never scared me. It was they dying. Living through those early years of AIDS, I’d seen and heard my share of stories of the horrible, painful dying of the infected. Some were lucky, in the sense that they were carried away quickly. But, as time moved on, science caught up a bit, keeping individuals alive through the first AIDS illness, through another, then another. I had friends who were sick, but alive, for a few years, rather than a few months, and I saw how they wasted away, frail, sickly, but alive. Many were grateful they were still alive. They terrified me though. I do not want to linger, to suffer for years; I would rather have quality of life, rather than quantity of life.

For the first few years of my infection, I, like most of us, figured I’d be dead within a couple of years. I was nearly twenty-three when I was diagnosed, and I never imagined, never believed I’d see thirty. I didn’t sit around, waiting to die. I didn’t dwell on death, nor did I wish for it (well, except for those periods when my depression would engulf me, and I’d spend hours wishing that death would take me. The depression was not a result of the HIV diagnosis. My depressions started when I was fifteen or sixteen, predating the HIV.) I didn’t dwell on thoughts of my death, I just assumed, based on what was going on around me, that I would be a part of the carnage of AIDS, another number, another statistic, another panel on The AIDS Quilt.

Those days were spent trying to cram as much life into my moments as I could. I wasn’t rich, or well off financially, so I didn’t make it to all those far away places I wanted to visit before I died. And, I’m not a big adventurer, so there were no mountains I felt the need to climb. I didn’t dream of skydiving, or deep-sea diving. No, my list was simply a wish to spend as much time as I could with those I cared for.

Someone suggested I go back to school, finish my degree. I did. I got my two-year associates degree, from the local community college, in two-and-a-half years (I had to take a couple of beginning math classes, so I could take Algebra, because they always tell you that you’ll need Algebra. I’m still waiting to use a quadratic equation in a real world setting). I worked full time, in retail, because retail stores are open seven days a week, so one can work full time, and still have two days off during the week to take classes. So, I worked 40 hours per week, and took 15-18 credit hours each semester. When I wasn’t at work, I was home, doing chores and studying.

It all paid off. I graduated Magna Cum Laude.

I enrolled in a four-year college, ready to begin work on my Bachelor’s Degree, and then, probably a Master’s Degree.

Then, in a moment of panic, I quit.

Why was I spending all this time working and going to school? Surely I was going to get sick soon, right?

Surely, after three years of good health, I was living on borrowed time. Many of the friends I’d made in the HIV+ support group were getting sicker. The funerals hadn’t stopped happening either. News of someone else’s death arrived with a mind-numbing frequency.

Shouldn’t my funeral be happing soon?

Sure, I still felt good, but, I’d seen enough to know that could change in an instant.

So, why, then, was I spending every moment I had left working and studying. Shouldn’t I try to do something enjoyable with my remaining time?

I wasn’t giving up; I wasn’t sitting around waiting.

I was simply looking at what was going on around me. Hundreds of us were still dying each week, thousands of us were getting sicker and closer to death each day.

Surely thinking that my turn was coming soon was not an irrational thing to believe?

Turns out, it was really irrational. Twenty-four years later, and here I am.

I didn’t die.

Of all the people I knew from those days I think of as The Dark Ages, only three others, besides myself, are still here.

Three.

I make Four.

Out of every HIV+ person I knew, out of every AIDS patient I knew in The Dark Ages.

My forty-seventh birthday is next week. I never imagined, nor even dared hope, I’d live to see fifty. Yet, it seems, unexpected events notwithstanding, I’ll celebrate the big Five-Oh in 2016.

I’m not ungrateful. I’m quite thankful that I’ve been able to care for my mom in her Golden Years.

I’m not angry.

I’m not bitter.

What I am is lost.  I feel as if I’ve showed up for the party on the wrong date.  Or, perhaps, it’s as if I’ve showed up for the wrong party.  I wasn’t supposed to be here past thirty.  Surely, I wouldn’t live until 40?  Now I’m at a party where I know no one, nor know what the party is for.

Life as we knew it, when we were all living on the moon, seemed to tell me that a long life was not in my future, I never planned for one. I spent the healthy moments of those years trying to be as Alive as I could be. Why plan and save for a future I’d probably never see?

Slowly, each year that passed brought a new drug, a new chance to put off the ravages of AIDS for a few more years.

Science has given me a future.

And I have no plan for it.

I chose to live like I was dying, and, damn if that didn’t work out well.

All my peers finished college, started a career, maybe have a few dollars set aside. And, good for them!

Me? I’ve got a two-year college degree which isn’t worth much. I have no career, nor many career skills. I don’t have a bank account, much less money in one.

I’m nearly fifty, and it seems I may have to worry about things like retirement and financial planning.

I wish to say again that I’m not angry or bitter. Not at myself. Not at my peers who’ve proceeded down the path of life in the normal way. I made choices based on what the information of the time was telling me. Why be angry that Science came along and kept me from dying a decade ago? I’m glad to be here.

Just lost.

I’m a man, in a soon to be forty-seven year old body, feeling like a kid just out of high school who is wondering what he wants to be when he grows up.

Melancholy is perhaps my word for today.

I miss those years when I felt so alive because I thought I was dying.

I miss those years, those first twenty-three years when I had no idea what HIV was.

I look at the road ahead of me, and realize I’ve not got all the hiking gear I need to make the journey a little easier.

But, mostly, I’m melancholy because I miss all those people I knew, who died much too young.

You’re gone, but not forgotten.

(You can read the fist two posts in this series here and here.  To learn about the title of these posts, see About Dispatches From The Moon)

Dispatches From The Moon: Two

The conversation in my head went like this:

Me:  “I need to tell my mom right away.”

Myself:  “Are you sure?”

Me:  “Yes.”

I:  “But you know what she’s like.”

Me:  “I do. But, she’s my mom. I have to tell her.”

Myself:  “How do you think she’ll react?”

Me:  “I’m not sure.”

Myself:  “This will break her heart.”

I:  “She’ll freak out and throw you out again.”

Me:  “Well, I don’t know that she’ll throw me out, but, if she does, I at least have somewhere to go this time.”

Myself:  “True.”

I:  “Are you sure Ronn will let you move in?”

Me:  “I think so. He said that we could live together.”

Myself:  “Well, let’s not think about that at the moment. She hasn’t thrown you out yet.”

I:  “You should have a plan.”

Me:  “A plan? C’mon. You know me better than that. I don’t ever have a plan. I just make it all up as I go along.”

Myself:  “You’re not that bad, you can plan things when you have to.”

Me:  “Thank you.”

Myself:  “You’re welcome. Don’t sell yourself so short.”

I:  “Can we stop with this lovefest and stick to the point. Are you sure you want to tell her.”

Me:  “I can’t not tell her. I mean, how can I keep it a secret? Well, I know how, but, … you know what I mean.”

Myself:  “Yeah. You’ve already got too many secrets you keep from your mom. Don’t add to it.”

I:  “At least she can’t take you to a shrink, like she did when you told her you were gay. This is beyond the power of a shrink.”

Me:  “That’s something to be thankful for.”

I:  “Is she still going to love you?”

Myself:  “Maybe the question should be does she love you enough?”

Me:  “I’m not sure I know the answer to that.”

Myself:  “There’s only one way to find out.”

Me:  “I know.”

I:  “Are you sure?”

Me:  “I’m sure.”

==++==++==++

The day was the same day that I found out about my status, all those many years ago, back in that dark time where we all thought that finding out that you were infected with the virus was virtually the same as being sentenced to death from AIDS, when there was still uncertainty and confusion about how one could become infected. I wish I could tell a story about what happened when I told my mom that I was HIV+. You’d think that with it being something that was so important to me that I would remember every detail, every word, every facial expression; it seems that it should be one of those moments that you always remember with such sharp clarity. There’s not much I remember about that day. This is what I do remember:

Pulling up in front of the house.

Seeing mom and a family friend in the window of my room: they were Spring Cleaning.

We gathered in my bedroom, mom, my brother (who was staying with us for awhile), our dear family friend, Ronn and I.

I don’t remember the words I said. Again, it seems as if they should be words that are etched in my mind, seared there by the pain of having to tell my mom that I was, again, in trouble. Whatever form the words took, the result was crying and tears.

What I do remember most about that day was that my mom said the most extraordinary thing to me, and, it’s those words that remain etched in my brain. This is what she said:

“I love you. You’re my son, and I love you. You’ll never be alone if you get sick. Even if it means that I catch HIV caring for you, I’ll take care of you. You’re my son, and I will always love you.”

Dispatches From The Moon: One

Picture this: two men walking down a long, sterile, old medical building hallway; one man is weeping uncontrollably, his head is buried in the second man’s shoulder, while the second man has his arms around the first man, holding him up, supporting him as they walk, his face is full of concern for the first man.

The two men are partners, lovers. One has just found out that he’s HIV+. Watching the scene of the two men walking down the hall, it could be assumed that the man who is crying uncontrollably is the one who just found out his HIV-status.

If you assumed the crying man was the HIV+ man, you’ve assumed wrong.

A few weeks before the walk down the hallway is when this story really begins: Christmas Day, 1988.

Ronn and I were celebrating our first Christmas together. There was a feeling of happiness and contentment in the air, that feeling that comes when you’re young, in love, and are close to celebrating your first anniversary. We weren’t living together yet, just spending a lot of time together.

I’d spent the morning and part of the afternoon celebrating Christmas with my mother and some family friends. I arrived at Ronn’s apartment sometime later in the afternoon. The events of the afternoon and evening are rather fuzzy. I think we exchanged gifts. I don’t know if we had planned to have dinner. All I remember was the phone call from Ronn’s sister, Theresa. It was obvious that something was wrong, and that she was ill. I could tell that much from the conversation and Ronn’s tears. There were lots of questions: how she got it (whatever it was), what the doctor’s thought, did dad know? There were lots of tears. Even if you’d asked me that day how long the phone call lasted, I’m not sure that I could have given an accurate answer. To me, it seemed to go on forever — hearing only half of that type of conversation leaves you feeling helpless and frustrated. I had no idea what was wrong, only that something serious seemed to be going on. Cancer, it seemed to me, was probably what it was. But what kind?

When Ronn hung up, the tears flowed even more, the tears of deep anguish: not the tears that just fall from one’s eyes, rather, the tears that start out deep in the soul, and push their way through the heart, then out the eyes. He couldn’t speak for a very long time. He’d been sitting on his bed while he was on the phone. I climbed onto the bed, and we lay down, my arms around him, his head on my chest, and he trembled and cried. For nearly two hours we lay there, his sobs and gulps for air were the only sounds. I didn’t press him for details, I knew he’d tell me when he was ready. Crying was what was most important.

When he finally spoke, the words he said were not anything like I was expecting to hear.

“Theresa has AIDS.”

I think the words were shocking not only for their unexpectedness, but, for what they represented: the intrusion of AIDS in our lives. In those early years of AIDS, it was a disease of New York, a disease of San Francisco. No one around us had it, so it allowed us to live in our little shelter, with it’s cardboard walls.

“Theresa has AIDS.”

The storm winds just blew the cardboard walls away. One probably always remembers the particulars of what they were doing when bad news is received, but, in those early days of the plague, the first time you heard that someone had It, you remember not just because the news is bad, you remember the moment because it became the moment when you could no longer pretend that AIDS was something that happened to other people, that it could finally crumble the walls of denial you’d surrounded yourself with it’s trumpet blast.

The next few days were spent in an emotional vacuum. Theresa didn’t feel she could tell her family about her diagnosis, and had asked Ronn to share the news. He spent a good deal of time on long-distance calls in those first few days. Each call was emotionally draining for him, and I spent a good deal of time doing what I did on Christmas Day: holding him, and letting him cry. I was frustrated and angry that there was so little I could do. I hated seeing him in that much pain. I was deeply saddened by the news, but, at the same time, I wasn’t as devastated as he was. For me, his sister was this rather nebulous person — someone I knew of, but had never met; the rest of his family were just as vague to me, since they lived two thousand miles away, and I had never met them.

About two weeks after Ronn’s sister called with her news, Ronn said that he thought that we should both get an HIV test. We arranged our schedules so we could go together. We decided to go to the City Health Clinic to get tested. We could have each gone to our primary care doctor, but, back in the day, there were lots of doctors who were dropping patients who had HIV. We figured it would be easier to get tested through the clinic, and, it would give us time to find a doctor who treated HIV+/AIDS patients if we needed to, rather than just be dropped by our current doctors, something that seemed humiliating if it were to happen.

From the moment we arrived in the clinic, I knew that my test would come back positive for the virus. An argument could be made that my certainty was just a defensive mechanism, that it was my mind preparing for the worst-case scenario. In this case, though, I’m not convinced by that argument. I’ve had that experience, before and since, of expecting the worst. In my case, when this happens, this feeling of dread is quite emotionally charged: I worry, I play scenarios over and over in my mind, I don’t sleep well, I am nervous and jittery, I’m even more neurotic that usual.

This was different.

Three things happened practically simultaneously: the nervous-anticipation I always felt when I knew I was going to have my blood taken vanished, to be replaced with a sense of calm acceptance; a voice said “I’m HIV+”, though I hesitate to use the word voice, as it sounds schizophrenic, so I’ll call it a sound, a sound that seemed to be pushed up from my chest to my brain, and the sound made a noise that seemed to say “I’m HIV+”; an image flashed before me, a specific image, a brief glimpse of a sexual encounter I’d had a few months before I’d met Ronn. I don’t know why that particular image appeared in my mind — it certainly wasn’t the only sexual encounter I’d had before I met Ronn. There was nothing about the man I was having the encounter with that suggested that he might be infected, there was no sudden realization that a spot on some part of his body was an AIDS spot; as far as I can remember, there were no marks of any kind on his body. But, the vision that appeared was so sharp, so clear, and so real, that even now, twenty-three years later, I can still see and feel the image in my mind. I’m not much of a believer in psychic phenomena — though, I’m not so close-minded that I don’t believe that some things can’t be explained scientifically — but, those first moments, when I walked into the clinic left me convinced that my test was going to come back positive. Whether it was my body telling me, or whether it was my brain just bracing itself for the worst, I’ll never know for sure. What I do know is that the calm that came over me stayed with me for the two intervening weeks, while we waited for our test results. Ronn was, understandably, very nervous about it.

We arrived for our test results appointment, and after a short wait in the waiting room, we were escorted into a small room, and offered seats in one of several school desks at the front of the room. Some writers might remark on the appearance of the room, commenting that the bright, colorful room contrasted with the grim news they received, or that the starkness of the room was foreboding, a glimpse of the results to come. Some writers are more observant than I (or is it ‘than me?) Quite frankly, other than the fact that we sat in two desks, and the nurse sat in a desk facing us, I could tell you nothing about the room; if it offered any glimpse of what was to come, I was oblivious.

I’m not going to badmouth the nurse who gave us our results, because I’m sure that there’s really no good way to tell people that their life has just changed dramatically. The fact that he didn’t group us together with a phrase like “both of your tests came back negative” was my first confirmation. He looked at Ronn, and said “Ronn, your test has come back negative. You’re not infected.” There was a long silence, and finally he looked at me, and spoke the words I’d known I’d hear, “John, I’m sorry, but your test came back positive. You are infected with HIV.”

There was a loud gasp, and an even louder, uncontrolled sob, and, so unexpected the sob, that I thought, for the briefest of moments, that it came from me. Then, I realized that it was Ronn. He sat there, slumped over, his hands covering his face, sobbing, his chest heaving. Because we were seated in desks, there wasn’t much I could do but reach over and hold onto his arm, squeezing it in reassurance.

The nurse sat quietly for a minute or two, and asked me “Are you doing okay?” I nodded. “Do you have any questions?” I shook my head. I just wanted to leave. I wanted to get Ronn out of there.

We sat there for a few more minutes, the only sound was Ronn’s sobbing. Finally the nurse, looking directly at me, said “Are you sure you’re okay? We’ve got counselors here if you’d like to talk to someone. I know it’s tough to come to grips with, and we’d like to be sure that you’re doing okay before you leave.”

I couldn’t help it. The words just came out. “Why are you asking me if I’m okay? Don’t I look okay? Don’t you think you should be worried about the one of us who doesn’t look like they’re doing ok? Do you have counseling for him?”

“I’m sorry. We don’t have any counselors here for the partners of HIV+ people. I can give you a list of support groups and therapists who would be willing to talk to Ronn.”

“What the fuck good are you then, if you’re not able to help those who need it?”

“I’m sorry. We don’t usually… Maybe I can go see if one of the …”

“Forget it.” I stood up. I walked around my desk, and knelt down beside Ronn. “Let’s go,” I said, softly, “Let’s get you home.” I helped him out of the chair. He was crying so much that he could barely keep himself upright. He leaned himself against me, I put my arms around him, and, together, we made our way down the hall, to the car, and, finally, home.

***************

For information on the title of this series, click here.