an empty victory

I avoid the mirror, the bloodshot eyes stained from the tears brought by years of frustration, 
I look instead inside, searching for an answer, a reason. 
Some sort of justification. Anything. 
The energy it took, the agonizing pain I forced myself to get past or swallow or get through, the stench of my own flesh decomposing, rotting away on my legs…
So many times I could have stopped fighting, so many times I wanted to. 
It wouldn’t have taken more than a few weeks until I went away, and if the pain got too unbearable I had the pills stashed. 
An hour at most, into one last dream – 
and then nothing but a name
forgotten in time.

But I had hope. I believed that things could be better.
That they would be.

How wrong I was.

So now, I search inside
for the passion
the rage
the anger
that i have found 
and hold so dear

I search for the love,
a reason,
a purpose…

but these past months
the deeper i go
the less i find and
the less i find a reason
to go on.

Seven years since I left the hospice, seven years fighting against the current, trying desperately to make it to calm water… 
and for what? For THIS fucking life? This life, where loneliness eats away at my heart, where I seldom know where the next meal is coming from, where I can’t even pay my bills.
This is not what I fought for. Not what I lived for – and I can’t help but think, at times, that I made a mistake.

But here I am. If it was a mistake, it’s already been made, and it’s far too late to give up now.
Maybe tomorrow I’ll sell some jewelry, maybe I’ll soon finally be able to buy a car so I can not only do the things I need for my business to make it grow, but escape this city and just drive until I find a place – a beach or forest somewhere, alone, where I can find my heart again.

Maybe.


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.
 

 

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…

20160924_074043

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.

 

 

 

 

The Way It Works / The Circle

The comforter loosely tucked around my body, the cool air from the slightly open window on my arms a perfect contrast to the soft warmth underneath. Cozy, warm & content as I sit up against the softness of my pillows, Ruby asleep with her back pressed tight against my legs. A single candle glows softly in the sconce on the wall behind me offering just enough light to pick out the letters on my laptop – in the quiet & solitude of 4:30am, the sudden brightness of my reading lamp would shatter this perfect moment.
I can barely see anything.
Screw it. I’ll squint.

I had just woken up thinking how amazing it can be, when things are used well.

Thanks to a few incredible people who are still lifting my spirits, still, even after all this time reminding me that is still one HELL of a warrior inside of me…

– & some ‘creative logic’ on my part in the herb & food needs (i.e. “I *think* I can stretch that out until… um… the 1st? Shit.”) – I was able to afford to take a journey out to El Cerrito yesterday to visit an incredible friend, woman, & fellow warrior who is going through her own medical hell – getting two different, completely soul-crushing messages about 48 hours apart like a fucking double-tap to the heart.

We had a kickass day, hanging out in her room, talking, laughing so hard I *honestly* thought my guts might finally come flying out of me (I was holding them in, squeezing as hard as I could with both arms & yelling at her to shut up before I popped – but would she? NoooOOOoooo – the bitch!) and… just remembering what it felt like to be *normal* people for a few hours, watching stupid TV, singing songs at the top of our lungs and giving each other loving hell.

I needed it just as much as she did, if not quite a bit more. There’s a healing in just simply that connection, that amount of love that that no medicine, no herb, no “perfect living” can *ever* equal.

We talked about our animals, and both wondered if either of us would still be alive without them… and she had the amazing idea of making a Youtube video about the caring for them – what they like, what they need, can or can’t eat – what makes them happy, the treats they like or a certain way they like to be scratched, or petted – or not…
Just in case.

Just in case so if anything ever did happen, if we weren’t able to talk or move or…

Then at least we would know that, even then, we still did our best for them…
On the way out there, some dancers got on the BART train, did their speech blahblahblah… and as they began I moved my eyes up from my writing, looked at them – then looked around at the other passengers, who were nearly ALL doing their best to ignore these courageous kids who were dancing for THEM, maybe in hopes to shine a little more color on the grey, Friday evening lives they lived.

They were, actually, pretty good! Did that new thing where it looks like your entire upper body has had every bone broken and swivels put in to repair the job instead of pins.
And thanks to those who help *me* – I was able to offer them something. I pulled out $5 – not much but a lot for me at the time, and the worst part is – I was sitting four rows back from the door, and as the hat-holder got to me after I *called* him to come over – that $5 was the only bill that they left with.
Still, they left the car in style – saying their thank-you’s & smiling.

After the day with Isa & finally back in the City, walking through Civic Center BART there were a couple guys around my age setting up – one in a wheelchair, but still somehow tall & lanky with pencil-dreads, his partner shorter but still thin, and looking close you could see what appeared to be not an easy life in their faces.

Then, as I took the first couple of steps up the escalator, they started singing – and I jumped back down. Goddamn. They sang an old spiritual, lanky in a *low* base & his partner harmonizing beautifully – I had $3 left in my pocket, so gave them that…

and I made my way back up the escalator into the frigid San Francisco night with my p-coat pulled tight, hat brim down – and an enormous smile beaming out from underneath it, still humming the spiritual.
And none of this would have ever been able to happen without you – you know who you are.
Thank you.

 

More To Do

(I know – this is a bit long for the anti-attention society these days – but I would appreciate if you read it & got the *whole* story. Far too often I talk with people who only know a little – because they only read a little, yet think they know all that’s happening. Nearly the whole story *is* in these pages, but you only get it if you take a couple extra minutes to read the posts in their entirety.)

I first heard of it 15 months ago. Some amazing new drug, with almost no side effects and a 95% success rate of curing Hepatitis-C.

This was a far cry from the Interferon therapy that we – John (my doctor) Val, my Hep-C advocate & I – tried a few years ago, long before the 18 months I spent in the hospice. That was one of the worst nightmares I have gone through with any drug – not only effecting me physically, but as an added bonus some very serious thoughts of cracking the head open of anyone walking too slow in front of me… and frequently of suicide.
I had given up on you. All of you.

I used to wonder how long it would take someone to find me in my motorhome, if anyone would even notice I was dead. None of my “friends” ever called or checked in just to say hello, and my thinking was twisted to feeling as if I already was dead – it was difficult to find any reason not to make it just a little more real. At least the pain in my heart would likely be gone…
Thankfully, after three straight months of this they weren’t getting the results the wanted, and I was taken off the Interferon – otherwise it would have been another year & three months, and deep inside, I knew that I wasn’t strong enough to make it through. Every time it entered my mind, ending everything made so much more sense. If they were too busy to call, they didn’t have the right to miss me… but I couldn’t let John & Val down. They had cared so much over the years, tried so hard – and now it was time to try again.

After 6 months of battle with the insurance companies, I was finally authorized to try this new drug, Harvoni. Six months, one pill a day, and I made them swear – minimal side effects.

They were true to their word.

After six months on Harvoni and another three to make certain it was effective, I got my final blood tests back this past Wednesday – and I am officially cured of Hepatitis-C.
When John called to tell me the news, I didn’t have the heart to tell him what I really feel – that this is an empty victory. That the damage has been done. Being cured of Hep-C at this point means nearly nothing. While the virus caused the problems, they are their own entity. Hep-C was the gun – but the bullet caused the destruction.

I still need to take the herbs daily, still need to watch my diet & eat the best things possible – but now there is a new fight, a new goal. One Western Medicine says isn’t possible – but Western medicine also calls me a “miracle” for coming out the other side of the hell I went through, and should be dead.

I’m alive because *you* didn’t give up on me.

I’m not a miracle more than anyone else is – I just chose to believe that I WOULD live – and now, I choose to believe that I WILL reverse the cirrhosis, and have a healthy liver. No ascites, edema – and when I accomplish that, I’ll be able to inspire others to know that it IS possible – and show them how *I* did it. Even if what I do doesn’t work for them, at least they will know that it is possible – and if they let me, I intend to be there for them as LIVING proof. As I didn’t have anything like that, they will already have an advantage over me, and because of that, I am ecstatic.

But at least for now, I still need your help. You’ve kept me alive this long, and because of you (& that “being alive thing) I was able to finally find my Birth Mother – and now, the book is in high gear and I’m fucking THRILLED.

Thanks to a dear friend in Amsterdam (who I have never met – yet) I was able to afford some critical things I needed for the creation of the Kickstarter, help building an author website, and of course, herbs & good food – *even* one of the most important things for my spirit, which was getting out and being around friends and a trip to visit my Mother.

Now, I need *your* help again, if you can. If you’re still willing, if you want to see just how far I can take this. I am GOING to reverse the cirrhosis – but I need the specific herbs to do that with.

If you can – please help. My paypal is ksea@culturefluxmagazine – and I will be grateful for anything to help me achieve this – to conquer the final thing that they say I can’t.

Thank you again, & again.

I love you.

~ Casey

To do it right…

I’ve been playing a dangerous game. Cutting corners, taking far less than I know I should in order to stretch it all just a little bit further, keeping a close eye on it all, noticing everything that was okay or about to go wrong, and hoping it wasn’t too late to fix.

I watched my legs begin to swell, and instead of taking more herbs to fix it I opened them up, draining the fluid that way. A tiny hole in each ankle a couple hours before I went to sleep, that’s all – but the fluid that was built up continued to flow all through the night, saturating the towels I had stacked underneath. Even when I was woken up with my legs cramping I let them continue until the morning, when I finally put a small drop of super-glue on each to staunch the flow. It’s the only thing that works, when the skin begins to dry & wrinkle & feel thin as paper.

It’s a foolish way to achieve what I needed to, I know that – but it kept me from needing to ask for help at least a little bit longer.

Now, I need to. Nearly ALL of my herbs are down to the last, and I have no money to get the foods I need or more coconut water for effective hydration.

Again, I need help – but hey, even though I did it the wrong way, at least it’s been over a month since I last asked!

Meanwhile, I’m continuing to work diligently on what I can give you – my book. Right now, it’s the only way I can repay the energy you share with me – but I AM getting better, and as I continue to – as I continue to work on getting my strength & health back, there will be more & more things I will be able to offer…

So if you can, please help. That leaky-leg crap – well, I’d like to avoid it in the future & do this *RIGHT.

I can’t thank you enough for all of your help – but I’m sure as hell trying, even if it’s simply passing it forward by giving old clothes & boots & blankets to the people who need them in my neighborhood… I do what *I can.

My paypal addy is ksea@culturefluxmagazine.com – and whether you can or can’t help, that doesn’t matter – I’m still going to love you.
To your health! (& mine),

~ Casey (kSea flux)

Connection / being seen

I was 13 when I first put pen to paper, and realized not only the fun – but the magick, and most importantly, in my joyless teenage years, the therapy it offered. The therapy I desperately needed.

You see – I was the most insecure, terrified and nearly silent kid – but when, one night, a pen found its way into my hand… my entire world changed. I had finally found something that would listen, and unlike talking to people, I felt that, at last, I wasn’t being judged. The paper would just sit there and accept all I had to say – and the more I wrote, the more it listened. It was the only friend I could talk to about all the confusion, angst, and above all, the loneliness & solitude I felt growing up.

The writing began almost entirely by accident. I had just discovered coffee, and one evening stayed up all night in the tiny kitchen in my parent’s home, writing & drawing in some sketchbooks I had laying around for some reason. Eventually I got together a few dollars, and after school one day went to Warwick’s – the main stationery/office supply/book store in La Jolla, and bought my very first actual journal. You probably know exactly what that journal looked like – the classic black, pebbled hardcover, 5.5”x8.5” blank book. Though everything before it has been lost or thrown away by my adopted parents, I still have that very first journal – though now have 10 others just like it, full of my heart, mind, and guts. My friends.

When internet journaling came around, it took me a while to warm up to it, but eventually I did. All of the sudden, people could actually read what I was writing… and when comments began occasionally coming in, and people were saying nice things about my writing, or connecting with it, or, sometimes, even thanking me for saying what they felt – all of the sudden I wasn’t alone anymore. With each post, with each comment that someone left, a little more fur was rubbed off – like the skin horse in The Velveteen Rabbit. People could SEE me, and sometimes in me, they saw themselves – and perhaps for the first time, I felt real. Maybe they did as well.

After a lifetime of feeling inadequate and like my life didn’t matter, I had found a way I could give something back to the world. A way I could connect with people, regardless of where they were, and not feel so alone. A way I could help… and maybe, just maybe – change someone’s life for the better.

As time went on however, people’s attention spans kept getting shorter & shorter. Less people read my words, less people commented, and the loneliness began creeping back. I started writing less, but – I just couldn’t find the words, or the passion I once had to write them. That was a HUGE mistake, as I had forgotten the reason I began writing, which is solely for me. Because I need to. Because the “paper” is still the best way to keep learning about my Self…

But there is one thing I would really like to do – something I’ve been thinking about for a few days. I write all this drivel, and except for perhaps a few, I don’t know most of you who reads it. I don’t know about you, I don’t know who you are, I don’t know about your country, what you like to eat, what your favorite song is – or pretty much anything about you – and I would really, really like to.

So I ask this of you. Tell me a little (or a lot) about yourself! Anything you want. Anything you don’t mind sharing, and as much or little of it as you want to. Just, at least, to start a conversation. There are no rules. Ask questions, send pictures, say anything you feel and know that I will not only appreciate it – I will absolutely LOVE it! Hell, even share this with friends of yours – let’s get people talking & connecting!
Of course, you are welcome to play along or remain silent – that’s entirely your choice – but I do hope you say something – and I promise – I will reply.

Much love, and thank you for reading.

P.S. – if you see this post on Facebook or Twitter, please let me know – but comment here!
AND, if you read this *here* and want to connect with me on facebook or twitter, I’m kSea flux on Facebook, and @kSea_flux on Twitter. Hope to see you there!

time again.

NYE, 2015/16. 2:07 am.
The night I was conceived in passion & beauty, 48 years ago.
Or maybe intoxication. Need to remember to ask. If my Mother ever calls.

Figured it was best to enter the new year clean for the first time in a while – no flesh hanging off of me, no blood to slip in, none of the poison that’s been in my head for the past 6 years, just wanting to end me.
It is important. Even though the new year is just another day – it’s what we MAKE it that makes it something new, something special, a place to start getting better, healthier, apply yourself at the job you hate more like a good little under-appreciated pawn  – or break out of the mess, and follow your dreams.
Regardless of what the dreams cost – they pay back tenfold. That job NEVER will… so maybe now it’s time to be who you always dreamed of being? Do what you’ve always wanted? Realize how GOOD it feels to get past the sheer terror of actually LIVING?

I dare you to.

I know 2016 is going t be insane. Things I haven’t been able to do, I now can or soon will be able to – and I fucking WILL.

It’s been 6 years of dreaming, 6 years of hope. 6 years of “Gods, if I live, I’m going to…”

And now it begins. The dreams I had when I was dying – or just simply lethargic & spiritless to the point that the act of getting out of bed was exhausting – NOW it is time to make them “reality”.
To create. To make. To help… to WRITE.

To jump off the cliff again.

This time, I don’t have to look over my shoulder.
I know my wings are there… the ones I’ve rebuilt with paste, bandages, and your generosity – and it’s time again to fly.

Happy New Year… and thank you.