Somehow, 50

I felt the blood drain from my face, my mind. It’s a strange feeling, like submersing your head in a pool of nearly frozen water, but not as cold.

“What?”

Now I was finding it difficult to stand. There wasn’t anything to sit on so I leaned against the racks of VHS videos behind the counter.
The voice on the other end of the line repeated what it said, a little slower, each point a sentence like he was trying to teach a five year old quantum physics.

“This is Dr. Thomas. Your test results have come back. You have tested positive. For the HIV antibody. The virus that causes AIDS.

  1. I was 19 years old, and a single two minute call was all it took rip away everything I thought I knew.

I had run away from home at 17 for the third and final time, and after living with my meth dealer for a while, *not* sleeping in his unfurnished living room on the floor, I decided to leave, go somewhere besides San Diego. I didn’t know a single person in the Bay Area. It seemed like good a place as any to try and figure out who I was.

When I was finally able to think, I realized that I must have been tested on a recent trip to visit my adopted parents. They asked if I wanted a physical while I was there, and I agreed. I wanted to show them I was fine, healthy. That there was no reason to worry about me. That I didn’t need them. I figured out that they had also requested an HIV test from the doctor, and getting my approval wasn’t important. The call on that day was kind of a shock.

I had never used needles, had slept with maybe five men. I was exempt from AIDS, I was mostly straight and I was safe. I guess all it took was one of those men being positive, and everything working just right to infect me. Talk about rotten luck.

But that didn’t matter now. Nothing mattered. Across the Bay the City was dying, the plague was killing people and no one had any answers. I’d heard the treatments they had weren’t that much better than the disease.
That’s all I knew. That’s all I chose to know.

I figured I had about 18 months, maybe two years left to live if I was lucky, but much of that time would be spent in horrible pain, my body shutting down, my own shit and blood and fluids pouring out of me. All the sudden my self-imposed rule of never using needles for recreational drugs and never using heroin went to shit. When I started to get sick, I would handle it my own way. I wasn’t going to be a burden on anyone – just slide away and disappear.

Time passed. A year, two, five, and the sickness never came. Still, bordering the line between conscious and subconscious, I kept waiting for the day everything turned around. I knew it was coming.

As much as I wanted to go back to school, to learn something I could use, I couldn’t commit to the time. I didn’t have a future.

 

 

I destroyed the best relationships & deepest loves I have ever known, selfishly afraid to ever force anyone to feel like they needed to be loyal, faithful, as they stood by, helpless, watching me die. For the same reason I never allowed myself to have what I perhaps wanted more than anything in life – a child.

I took each day as it came, tried to make the best out of it. I studied myself and my beliefs, did all I could to learn about me and what life was. I taught myself to see the beauty in everything, every day. I tried to help, I learned from others, I read & continue to read feverishly, so at least I might have some wisdom, some inspiration, something to offer another. Maybe something clever & profound to say in my final breath. Only up until the past 15 or so years, every moment of my life has been spent expecting to die. It’s the only thing I’ve known.

It sure did fuck up my credit score.

Now, somehow, I’m only a few weeks away from 50 years old, and wondering how it is that I got here. I’ve spent years looking for an answer as to why. Why, of all people, me?

I’ve only been able to come up with one answer that makes any sense at all.
 

 

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remembering: how it feels

It was 28 years ago. While much of that time is hazy save for a few of little consequence, there is one single moment that is cut into my memory – a deep jagged scar that will never go away.

I was living with Aleph, Rip & Jennifer at New Method Warehouse, heaven and haven, some time before moving there from my first home in Berkeley, the YMCA on Allston Way. I had run away to the Bay Area at 17, knowing absolutely no-one but eventually met some of the better people. People who are still my friends.

This isn’t about them.

After two years, I had begun talking to my adopted parents again, and they proposed coming back down to San Diego to visit. They would pay for the flight, everything – just a brief time to say hi, maybe try to mend some things between us.

Missing the beach and feeling as nostalgic as a kid can feel for certain things – the Pannikin Cafe, where I spent most of my days alone & wishing I wasn’t so insecure & withdrawn, sitting at the corner table of their outside patio watching people, writing & drawing in my journals, pretending to be all adult & doing my best to figure out life – and the abandoned building on Pearl St, the only abandoned building in La Jolla, which I found my way into one night and called home for a few months after I left my parents house.

Memories. Sure, I would come visit.

While there for those few days, they suggested that it wouldn’t be a bad idea to get a physical – just a routine thing at our family doctor to make sure I’m healthy and doing alright. Eager to show them that I’m fine, flourishing, rosy-cheeked & flourishing, eager to show them that they can please stop worrying about me, I agreed. I don’t recall much more of the visit, but I suspect that it went mostly fine, or as fine as it could. Back to Berkeley, back to New Method and playing on all of Rip’s music equipment, back to work at Tower Video on Telegraph, back to free time at Cafe International, coffee and writing, still trying to figure out life and taking most of my instruction from ‘Barfly’. Back to just watching the days pass, one by one, an inconsequential life.

Life was simple, good. Me & my ’68 Dart, rolling with Aleph blasting Public Enemy & the Chili Peppers on the boombox that sat between us, changing the words to “Me & My Friends” to include each other, singing at the top of our lungs & making stupid faces…

A few weeks after I returned from San Diego, the memory of the visit already fading into the place where ‘things that happened and don’t matter’ resides in the mind, I was at work ringing up video rentals and putting boxes on shelves, when Chase, a girl who I worked with, called me over. Someone called and actually asked for me. That was rare, but whatever. I waled behind the counter, pressed the blinking line button, and confirmed “Yeah, this is Casey, what can I do for you?” As I listened to the unknown guy on the other end of the line, his voice grew dim but it was still the only thing I could hear. I felt the blood draining from my face, my knees buckling. Many years later I would experience the exact same feeling again when Baruzula told me that my Bean had been hit and killed by the train…

What the person – Dr. whoever on the other end of the line told me didn’t make any sense. I couldn’t have it… could I? Yeah, I had experimented, played around, but only a few times. It was fun, I had fun but it wasn’t really for me, I liked girls, women, more. I mean fuck, I didn’t even know what it was, no one really did at that time, besides a brand, a curse, a stigma and a near guarantee that anyone who had it would soon die a slow, agonizing death. I was healthy. I felt great. How could I have it? How was I supposed to feel? How could I possibly be HIV+? I wasn’t even TESTED! This is a fucking lame joke, asshole. How was I, when was I… oh……. wait.

Without my knowledge or consent, my adopted parents had requested an extra test during my physical.

In the time it took for the doctor on the other end of the line to say four words, my entire world changed. My story was rewritten.

Some things were obvious effects; I wasn’t concerned about trying to live anymore, not worried about if I took too much of this or that drug I would die. As long as I didn’t end up a burden to someone, as long as it was clean, whatever…

But there was one thing that in looking back now, I truly appreciate; Without question, this knowledge insisted that I looked far deeper inside of myself than most have reason to. It has forced upon and blessed me with a wisdom that I can offer to others and help people with. In the strangest of ways, it has become a gift.
Nearly every decision I made and continue to make comes with necessary introspection, a conscious decision, from deciding where I want my life to go to what may become of the most innocent flirtation. Little can be done without first reaching deep inside of myself and looking at it from every view I can consider.

While that may seem oppressive and prohibiting – and sometimes is, it has also granted not only a profound self-knowledge, but an absolute lust and appreciation for the things in life that don’t require me to do anything more than simply choose to say, with enthusiasm and joy: “Fuck YES”… then unfold my wings, and remember how it feels to fly.

A Revelation.

9-24-10
 
How long do I need to keep fighting this? How long can I?
It’s coming up on three years, three straight years of peeling away flesh, fingernails caked with blood – three years of almost getting better and then not. Three years of hope, of trying to figure out why this or that wasn’t working. Back and forth, always ending up with the same result – always ending up with the swelling coming back, the pain, the frustration of not seeming to move forward at all.
 
When it comes down to it, three years out of what… twenty-five, twenty six ago, when I first heard, was first diagnosed… when I got the surprise call at work in Berkeley from a Doctor in San Diego, telling me that I was by all rights dead. The inflection in his voice didn’t hide the gravity of the news well at all.
No one knew enough about it then to be able to promise any hope, so I pushed it away, ignored it, hid it in a place that only I knew of, but I couldn’t keep it from seeping through the cracks of the wall I built so meticulously around it.
If I denied it with enough strength, would it go away? This random call from hundreds of miles away, my parents had asked me if I wanted a general physical when I went to visit them, and had also, completely without my knowledge, scheduled the HIV test. I didn’t have the slightest that I was tested for the virus until I was surprised with the telephone call at work telling me that I had it.
Was it even true to begin with? Could it have somehow been a prank call?
Was it 1985, ’84,’86? Does it matter? Though death was thought of with every cold, every ailment, I decided to live…

 
Three years is nothing. Keep fighting. There’s a reason that I’m still here. Keep fighting.
 
So little said here. I don’t feel like writing. I don’t feel like writing but needed to, needed to talk to someone but there has never been anyone, anything but pen, paper, computer. The only best friend I have ever known or had.  Writing demands nothing from me except the courage to reach as deep as possible and find the purest honesty.
 
I am afraid. My body is decaying. The disease is no longer hiding.
 
It has been a good life, and I am grateful for every moment I have had. For every person I made smile, for all that I have learned and been able to share with others. I am so very thankful that I might have possibly made their lives just a little bit more beautiful… if even just for a moment.
 
So much more to say, but not now. Some things will never be said.
 
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
9-24-10
 
I write about this. I write too much about this. Am I to blame? For over half of my life, it has controlled my life. Every love shadowed, every dream coming with the fine print. Sure, you can dream, but don’t dream too far into the future because you’ll probably be dead.
I turned from boy to man with the ever-present haunting of what I knew.

Am I the disease or the man?
This is the new question, the one that has come as a result of the past three years.
I have let it become me, have let it control my life – my actions, relationships, words, thoughts…
 
Am I to blame?
 
Only if I don’t do anything about it, now that I know.
 
It is time for a new fight; a new quest.
 
It is time to become the man.
 
There is still much to say, much to release & let go of. It will be a process, changing into who I am – and saying goodbye to so much of me…