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.
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.
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.
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)