Dispatches From The Moon: Three

My 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.