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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Through the Brambles

As the clocked clicked on, 12 hours, 24 and further and ticking up to the door of 36 hours, I thought that somehow, the herbs I’m taking specifically for easing the withdrawals were doing far more, far better than I had expected them to – that I ever *dreamed* they could do.

I began to feel only the most minor of miseries after the 24 hour mark – energy draining, my mood faltering and becoming less optimistic and focus slowly starting to disintegrate. I felt some of the pain in my calves reminding me that it’s still there, and in a strange way I found comfort in that; here was something I knew.

But where was the rest?

Then, 32 hours after my last dose & after watching downloaded movies to the point where I couldn’t tolerate it anymore, I laid down in bed, propped my back slightly against the pillows & did my best to read more of “Look Homeward, Angel” by Thomas Wolfe. I just finished another book that morning and now desperately needed something to occupy my mind. I was tired, knew I should probably try to sleep, but the signs were coming on stronger then & felt I needed a place for my  thoughts to go and calm down a bit before sleep was even attempted.

Not being able to enjoy reading with a mind that wasn’t really seeing the words as any more than black scratches on paper, I gave in, got out of bed, stood up and did dome minor stretches of my legs, torso & arms, poured more coconut water into my thermos to do my best to stay hydrated. I brushed the dog hair off my feet, gave Rubes a hug and got under the thin top cover above the comforter, making certain that all the pillows were placed perfectly for the best comfort available, which under any other circumstances would have gently carried me away to dreamland within a matter of minutes…

This time, however, I wasn’t so fortunate. This time, I’m paying. a debt, and sleep is only *one* of the things I must give to the collector.

Not three minutes after I breathed the deep & final ‘sigh’ and waited for my mind to drift off into it’s odd ideas & dreams, my right leg twitched violently bringing my knee in the direction of my chest. Not to be outdone, both of my shoulders shot up in a convulsive manner – as if they were tying to say “Hey, don’t look at me – I don’t know what the hell that was”.

I’ve been here before.

I find it humorous, those that post “you can do it!” on my Facebook page. Humorous, but appreciated. They don’t know what I’ve been through already.

They don’t know of the pain that went on for months in the hospice, pain that even the morphine couldn’t touch. They don’t know that I wondered if the pain would ever even cease before I died, or every day would be like this until the end. They have no idea how many times I thought of taking away the pain myself – taking away everything.

I’ve always kept a stash of 500mg or more of morphine, secreted away but close enough so that I didn’t have to get out of bed if I couldn’t.

They don’t know how many times those pills sat in my hand as I stared at their round & oval shapes, trying to justify taking them, trying harder not to.

No, they don’t know any of that because I didn’t tell them. It wasn’t their business, and the last thing I wanted was a bunch of common bullshit attempts to cheer me up. Certainly not then, and most certainly not them… or most of them, at least.

But I digress.

This won’t be easy by any stretch of the imagination, but it will end. Like cutting away and climbing through blackberry brambles that have grown over a path, getting torn, flesh getting ripped & stained with blood & juice but persevering, knowing that once I make it through this dark thicket, leaving the parts of body & mind I don’t need anymore draped & dripping on the thorns…

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Once I make it through, I’ll find a clearing of indescribably clear beauty –
And I’ll find me, waiting, and smiling.
9-23-24-16

Still kickin’

Funny how you can be just innocently reading something, your mind behaving for the most part & not going down that road of what you really should kind-of be doing because it needs to get done but you’ve rationalized it really well since it’s still really early and there are SO many more hours in the day to work on what should be done, and then you read something that makes you think about something else, and that something else makes you think about something else entirely.
I was just reading Jenny Lawson’s book “Furiously Happy” (which if you haven’t read yet, you should look into why you enjoy depriving yourself of certain amazingly wonderful things) and she mentioned a list of life goals.

I thought about making my own, just for kicks, and then I did that thing where I took the thought further, and wondered if I ever had. I mean, I’ve make enough month-goals, and week & day goals (which are usually simply known as to-do lists and are pretty damn boring compared to a LIFE goal – I mean, think about it. Day-goal: – “send emails to people”. Life-goal: “Jump out of a plane above an active volcano.” (Not that I ever really want to jump into an active volcano, that was an example – but I DO want to go skydiving. AND learn how to fly a plane…”

Then I began wondering WHY I had never made any lifegoal lists, because it almost sounds like fun.

And then I remembered that 30 years ago I was working at Tower Video in Berkeley, and got a call from some Doctor who could have said “If you have written a list of life goals, it might be easier on you if you just tear that thing up right now.” But instead he said “We’ve gotten your test results back, and they came back positive for HIV antibodies.”

This was back in the years when everyone was still trying to figure out what it was – also known as “The years when everybody was dying”, at least in the less formal circles. I didn’t know much about it then, and chose to completely suppress and internalize what I just heard, and live until I died. The way I figured, I had 1 -2 years at most, and wasn’t going to waste time with dwelling on it. I mean hell, I was barely 19 years old. I had better things to do with the little time I had left.

I recently looked up some statistics, and found that 98% of people infected with HIV died within 18 months.

That’s a LOT.

Somehow however, I wasn’t one of them, and I still can’t really figure it out. I’m pretty sure that I’m not meant to – that it’s just something I carry with me forever to inspire me to do more huge things and say to myself “Maybe THIS is why I lived?” Hell – I’ll never know…

 

But I do know that for around ten years after I got that news, every few days I wondered when I would finally get sick and die. I’ll tell you one thing – it really fucks with any long-term plans. “Hey! Maybe I’ll learn how to… no, I’ll probably die before it’s done and that time will be wasted.” “Okay, by the time I hit 30 I want to have accomplished…. HA! Who am I trying to fool? I’ll be dead!

It’s really difficult to imagine your future, to prepare for it, to hang onto the dreams of who you want to be when you are absolutely certain that you’ll be nothing but a vague memory I people’s minds – if even that.

But for some strange reason that I’ll never be able to figure out (unless, of course, I do something & die immediately afterwards, saying with my last breath “OH. THAT’S why I lived!”)…

I’m still here. ALIVE – and even though there are days when I just want to hide under the covers in bed all day, and sometimes do – every second of this life counts.

Do something good.

back in.

 

It’s hard for me to accept. Impossible to foresee what the outcome will be.

Either all I have worked for comes to fruition and my life changes entirely, or… it doesn’t.

Like the 1st letter I sent to the person who, after searching for 25 years, I knew was my birth mother, and the wait after that. Like fighting so hard and so long to make a dream come true that the final act of jumping into the unknown is the only direction to go anymore, I need to take a deep breath, and believe.

It’s time to let go.

Let go of nearly all of the control I had, and just do my best to aim away from the rocks and trees as I soar past them, faster than I’ve become familiar with over the years of lying immobile in a hospital bed and then my own, planning for this time as life passed me by.

It’s time to join life again. To jump back in the game.

It’s getting closer. It’s what I have worked so hard for. It’s what I have studied far too much for – and I’m terrified. I need to remember how to love being afraid, because I *sure* as hell have forgotten – and I recall not that long ago when being afraid, when doing something I had NO idea how to do was like a drug for me – a euphoria. Where the hell did that person go?
I need to do some digging around inside of me & find him again. Maybe he’s just sleeping – feeling unloved and under used.

This will light a fire under his ass.

Very soon, it comes to the point where I have to release this to the world, and see if they approve. See if they are interested enough in me enough to support my project, and hope that they are.

Will they see me? Do they want to know me?

Will they love me?

Sure, I’m frightened – but I also believe that it’s time to light a fire under MY ass, and which-ever way this goes – in some way, it will be successful.

out of my head

I sit up in my bed, comforter pulled up to just above my stomach, drinking the tea that I just made. Ruby sleeps beside me, snoring gently off & on. It’s just after 6:00am & there is a rare serene quiet to the Tenderloin neighborhood of San Francisco – no sirens, yelling, horns honking… even the crow’s abrasive caw-shout isn’t heard.

I adore the solitude of this part of the day, & try to be a part of it if the night before has been kind enough to allow me to. Of course, sometimes it isn’t, especially these days with all the physical crap I have to deal with, sometimes enough to wake me up, sometimes enough to prevent me from sleeping when I intend to in the first place – but today, this morning, is mine.

I’ve been thinking a lot about perfectionism. It’s something that I’m cursed with, and has for a large part of my life really screwed with things I wanted to do, going so far as to prevent them from happening altogether.
Without question it’s why this whole book project has taken so long to come to fruition, with me (aka “this asshole”) ripping things apart, re-doing & incessantly re-writing the copy for the site & never being satisfied – and it can’t go on like this. Not if I want to continue, and SURE as hell not if I ever want to finish my book.

I look further into the need for everything to be perfect & find that it could be based – most liely IS based – in fear. If I keep on changing things, I never have to show it to the public and am still able to say that “I’m working on it”.

I need to work on that. I need to change that.
If I don’t, then my life & all I want to do will be entombed in frustration, ripping away the joy I remember when I *did* finish things whether they were perfect or not in my eyes – performances, my magazine – hell, even my Living Statue garb when I began. I still can’t believe I started doing it without the frock coat & in my Dr. Martens – tattooed arms bare, black boots, poorly done makeup – but I DID it. I got out there. I was appreciated, tipped well, and hells- it worked.

I need to remember that lesson.

Things will never be as perfect as I want them to be, so I need to stop needing them to be. I need to remember that it is only a foolish fear that I created inside my mind to help avoid the time when it will need to be shown to the world.

Some people will like it, others won’t – whatever it is. Whatever it is, even the smallest dream that I make happen is worth FAR more than the largest dream that I never attempt.

That last part is from a quote I read somewhere, and it fits perfectly into this… but there’s also one of *my* quotes that may work well in this case: “Never let logic stand in the way of your dreams.”

My life began when I started making my dreams come true. The first time it happened & many times after that, they were small dreams (if there actually *is* such a thing) – they took little effort or fear – but the feeling that washed over me when I made them into a reality was – and will ALWAYS be – incomparable in the sensation of strength & accomplishment it gave me, and each one reinforced me with the confidence to reach for more…

invocationpixie.jpearcher79ceccfd-54ad-442e-848c-b60b259371f5.jpe

 

…but then I got sick. Somehow, although it was the greatest & most difficult thing I have *ever* done, coming out of that – saving my life when no one else could, and literally dancing out of the front door of the Hospice (which admittedly was more of a stylish shuffle aided by my cane) – for some reason I don’t see that as an accomplishment.

Sitting here thinking about why… perhaps part of the reason is because although I did what many people believed unlikely or even impossible, I focus on more of how the sickness ripped my life apart – the exquisite life I had built, full of excitement, love, adventure & value – and in many ways continues to cage it as only a ghost of what it was.

I whine about how much it took away from me, instead of how much it gave and allows me to give to others… I had never thought of that until now; not even the idea that it didn’t feel like something good I did – and as a result was likely at least partially responsible for breaking the habit I had built of fearlessly realizing my goals & dreams.

Great. Something else I need to work on – but at least now it has a name, and the beginning of an understanding. That is pretty damn cool. I know where I should be looking now – instead of before when it was like trying to fix the brakes on a motorcycle by adjusting the throttle.
MotorHeart

It’s now just flipping a few switches in my head from self-pity to gratitude that I’m still alive. Shouldn’t be that difficult, right?

It’s LONG past time to start making dreams come true again.
And simply through writing it out of my head, I just may have found the reason why it’s been so godsdamned difficult for me.

ON   WITH   THE   SHOW!

Closer…

 

I can feel it getting closer.

What began as something that I thought would be easy over a year ago quickly revealed itself to me that it wasn’t when I got down to the work involved. This wasn’t something that I could take lightly – and I was far from prepared to deal with the way my own fears made me stumble along the way… but I kept at it.

It’s all I had.

Now, what I perceive as the hardest part – the part that tested me, made sure I had what it takes as I read, studied and re-wrote every work on every page in every part about 20 times is nearly over, and soon I get to do what this has all been buiding up to – write my book.

It’s amazing what I have learned over the time I have been putting the first part of this project together, and there have often been times where I think that I learned *too* much, as with nearly each new discovery came a new change that need to be made and what I thought might be alright before simply wasn’t anymore. Not for me, at least…

But soon it will be over – I’ll be able to focus on what it has all been building up to – and just as importantly, I’ll be able to quit being consumed by the emotional walls it is necessary to get through every time I need to ask for help for the herbs I need to stay alive, and, at long last, be able to support my SELF and the things I need.

NGG.DreamersLoveLetter

I’m not going to pretend that writing this book is going to be anything even *close* to easy, and the process of it – rough draft, re-write, editing, design, promotion, etc. will be quite a task – as well as the rawness of emotion that I will need to re-live will at times, I’m sure, rip my soul apart… but the exciting thing is that it WILL get done, each & every day a bit more – and it will help someone else.

It *will* help.
And I can feel it getting closer…

Getting out of the way of myself

(Begun)Saturday night, roughly 12:30am. GrassFish 2016
Post laydown recharge –
(Semi-completed) Monday, 5.17.16, the early waking hours before my feet hit the floor…

~ ~ ~ ~ ~
I’m tempted to say that I almost didn’t make up here, but now, ultimately, I know better. Some things are simply *meant* to happen, and we end up using more effort to ignore and fight the call than we would simply listening to the ‘Verse and accepting that it will *always* know what we need.
Of course, it’s simple to ignore or simply not notice, to have what *you* thought remain true to your expectations. It’s safe to remain in the bubble that we’ve created and go on with our daily lives, digging for any excuse available to remain in our world of woe-is-me. I never was like this before. Before the hospice.
I’ve let fear take over my thoughts.
A few months ago when this event was announced, a week of camping on a sublime campground 3 hours north of San Francisco, at that moment I resigned myself to most likely not being able to join.
All of the reasons and rationalities ran through my head in a valiant attempt to justify my decision: Finances, first & foremost. I had already asked for and received, in my mind, more than I deserved. Even though it was to help keep me alive, it still felt – will always feel – like I am asking for too much. If I asked for something simply to *enjoy* life instead of not dying, that would be abusing the kindness that has already been shown – and could possibly take away from the assistance that I actually *need* in the future to not only stay alive, but in the effort to get well.
Then of course there was Ruby, my dog, my companion, the one, who with her smiles and snuggles and dependency on me takes the sharpest edges off the loneliness that is an ever-increasing part of my world… and of course, the book project. Losing myself in the work & words & all of the things that need to happen so *it* can happen… no. I need to work. To dig my way out from under the poverty that keeps me stuck here, to finally be able to give back.
In my mind, it was settled. I simply couldn’t go to GrassFish.

I’ll tolerate the daily drudgery because the daily drudgery is easier than actually changing the ways that have been set for me – but that is *NOT* me. I wondered who this person was that I had become, wondered how this fearful bastard took control.

I looked back to the time before the sickness took hold of me, to that very moment I gave everything that I was *supposed* to do up and ran with a smile & wild look in my eyes to the edge of the cliff – and jumped – not even knowing if I even had wings but hoping that they might unfold… and if they didn’t, if my body & soul was shattered on the razor-sharp rocks below, then so be it.
I was done being someone else’s pawn, someone else’s work-horse.
I wanted to remember who I wanted to be, and become that person who I dreamt of as a child.
And I was more than willing to pay any cost to find him. To find, for the first time… me.

And I fell. I lost my car, had to sell off everything that I could simply to feed my dog & me in-between the odd-jobs I took – at one point I couldn’t help but laugh as I was surrounded by over $7,000 worth of original French Art-Deco lamps to rewire & had $3 & change in my pocket… but even though I was broke, hungry, and days away from getting the eviction notice on my apartment – something felt more right than it ever had before. With the odd-jobs I was helping people, and the stain left on my soul from my last “official” job was fading. I was absolutely terrified of what might happen next, but I had never felt so alive. There was a strange feeling inside that I remember then, hidden behind the terror and uncertainty, but at certain times it was much stronger and edged its way out to the front. The closest I can come to naming it is genuine happiness… the kind of happiness that begins at the core of your soul and makes your entire mind & body tingle, adds a vibrant light behind your eyes and a peacefulness in every motion you make.
I was doing something right. I was becoming me – and it was noticed.

From that moment on, it was easy to compare, in a way, to Alice falling down the rabbit hole. Things started falling into place. A dear friend hooked me up with a band that I had performed with before called The Dresden Dolls, and I started working with them – organizing performers for their shows around the world from wherever I could find a place to sleep after I was evicted – from a fetish dungeon (with rooms for all types of fetishes) to artist warehouses, friends couches and gods, the stories…
From being flown out to Boston, coming back to San Francisco, deciding to move there and being re-routed in route… just going wherever I was pointed, making the best of wherever I ended up.

I can’t say I wasn’t afraid, but I didn’t let the fear control me – and the world just kept opening itself up to me, as if everywhere I went there was the proverbial red carpet laid out on the roads and in my mind…

I created an online magazine, produced events, and even won an award. There was no stopping me…

and then I got sick.

Even though I somehow lived through that, the fear was so unknown & intense – knowing that at literally any moment I could die – that I don’t think I was ever able to shake it.
I still carry that fear, and only when this camping event came up and it came to the point that it would have taken more effort to hold onto it like a child’s security blanket and not go to GrassFish1 did I realize that the fear that I had worked so hard to move through in the past was now, again, acting as a barrier against living the life that I wanted.

When Tanya Mia offered me tickets, a place to sleep, and food when up there at the last moment, I still fought it. I couldn’t find someone I trusted enough to watch my dog, Ruby, with so little time to spare. Hells – I only had 1 day and with my mind battling me, couldn’t think of anyone… but wait, maybe? I sent a message, and the first person was busy. Good. See? I was right. I can’t go, but thanks.

But then there was another person I thought of. A long-shot as they’re usually busy and active, but… and then the reply came back. They can watch her but won’t be available until late Friday after work.
Okay. Now, a ride…

Ultimately, it worked out, and I was a fool for fighting it so hard – but through it all, I learned what I needed to –
1) that I need to let go of this fucking fear that’s been clinging to me ever since I was dying in the hospice. For nearly six years it has been controlling me, weakening me, and I have been losing me. It’s time to come back.
2) that this book is going to be terrifying to write – but I’m more familiar with fear than most, and I will do it. Hell – I’ve already begun. It is the greatest thing I can give. I lived a life that I couldn’t even imagine at the time and became who I wanted to be. I went (and continue on) a great journey, one that has taken me from the shining top of life to the depths of watching my own flesh decompose but I wasn’t willing to go I had to live and… and as I did what I swore I would do and danced out the door of the hospice, called a “miracle” by the nurses and nurse assistants who (understandably) pegged me for dead…
If I can help or inspire even one person with this book, that’s all I need.

Now, time to write a book.
We are ALL going to win.

1- GrassFish is a mid-year campout that has been going on for… I don’t know, 5-7 years? Born from a Burning Man
camp created by Lord Huckleberry & Opal Essence a long time ago named DustFish. By FAR, the best camp on the Playa.