out from underneath

It’s all in my mind.
I keep telling myself that, doing my best to rip it away, rip it out and discard it like I did most of the memories of my childhood, but it’s tricky. I tend to hold onto things.

I can almost trace it back to the exact time it started, this heart-hoarding. 1986. A call, telling me i would be dead within a year, or maybe a few months longer in excruciating pain if i wasn’t lucky. 19 years old, and all of the sudden all the time I thought I had wasn’t there anymore. I needed to remember it all. I needed a reason to die smiling.

Everyone else was doing what they should. I read the papers, heard about the vigils, and everyone else was behaving as expected, taking their last breaths in a timely manner.

A year passed, then two, then three, and every day for over a decade I would wake up and wonder if that was the day I finally got sick.

every single fucking day, when my mind was left to wander for even a few minutes, I remembered – I couldn’t forget – that every second mattered, and shouldn’t be forgotten.

It’s hard to break a habit like that, but I need to. I need to crawl out from underneath this shadow that has kept me from believing in any kind of future for myself.
Things need to change. I need to change.

It’s all in my mind.

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coming true

This timing isn’t working. All I can do when I sit down to write in the morning is think about how quickly I can get it done. There are so many stories I want to write, so much life I’ve lived, but they don’t fit neatly into a few small paragraphs. Into a small pocket of time. There is so much more I need to be doing, and so much more time than I had intended to have this ready by has already passed. just a few more things and every bit of focus I can dredge up to get them done before I’m able to take my art and life to a place that has only been a vague dream with no knowledge of how to get there – like the whisper of a pirate’s buried treasure with no map of how to get there.
At least, up until now.

Suddenly this lifelong glassy-eyed, “wouldn’t it be nice if someday” dream has an incredibly good chance of  becoming real… and I’m having an insanely difficult time believing it. It’s as if David Bowie called you out of the blue to explain that his death was just a hoax, and not to intrude but he would love it if you could find a nice two bedroom apartment where you & he could live for a while, and just live quiet lives hanging out, chatting over pints at local dive bars on the nights when you two weren’t at the studio while he cut another album – and by the way, do sing or play an instrument?

Okay, so that may be a bit unbalanced on the level of disbelief in the possibility of it happening, but you get the picture. The life I’ve considered nearly impossible to ever be mine is now so close to becoming reality that I’m absolutely terrified. More than finding my birth mother, more than dying. This is being able to do what I want, to have the freedom to go anywhere, to simply treat a friend to a nice dinner on a whim as we walk past an interesting looking restaurant – I can’t even remember how many years it’s been since I’ve been able to do something as simple as that…
and to be able to help. Having a car when someone needs a ride or to move, money if they need that, donations to animal shelters & sanctuaries, and eventually even a yard large enough for Rubes to run around & plan in – with her new friends.

I see the steps, have carefully thought about how it’s going to grow, and am ready as I can be for the inevitable challenges along the way.
I’ve learned quite a bit about how to work through adversity over this life I’ve lived.
Maybe it – the good and bad – maybe all that I’ve lived through has been preparation for this new adventure. Maybe it has all been trying to teach me not to be afraid, that one way or another, it will all work out – just like it always has.

All I need to do is get my ass in gear & get the things I need to get done, done – and maybe, come this Friday – four days from now – this impossible dream will get its first taste of reality as I receive the first wholesale order for my jewelry.

Either that, or David Bowie will call.

Moving Forward

Every morning I would wake up excited, the doors to infinite possibilities wide open & inviting me in. Decisions were sometimes made by careful deduction, but more often than not with little more than whim, the flip of a coin, direction of the wind, or the quiet, passionate desperation that endlessly seethes inside of me – the eternal need for the unknown, for adventure. To continually test myself with whatever blessing or adversity the Universe could conjure up to throw at me, and grow. And learn.

Plans to move to Boston fell through so I found myself in Austin volunteering for Katrina refugees in an artist’s forest. A new friend had never been to Burning Man so I promised her a ride from New Orleans, only being able to find a van to buy less than 10 days before we had scheduled to leave. I couldn’t find the magazine I wanted to read so I decided to create it, not having the first idea how I was going to, or even how to build a website – and four months after it launched was producing shows for the first time & winning awards.

Nothing could stand in my way. The world opened to whatever I sought or desired, and if it didn’t exist I created it. It felt like nothing could stop me, like this life I had shaped and formed and fashioned would keep storming ahead. I made my dreams so real, so beautiful, that they virtually fulfilled themselves…

…and then there was nothing. I felt like I was lying in the middle of a freeway, unable to move as life rushed by and all I could do was lay there, static in a world of action, decaying, decomposing, trying not to die.

And time passed. What was supposed to be a three month vacation turned into eighteen months of hell. People visited, some, I’m sure, expecting it to be the last time they saw me alive. I was good at reassuring them, I think, letting them believe I was fine, strong, getting better so that they would be more comfortable. I don’t think I ever expressed how terrified & unsure I was most of the time. I wouldn’t even let myself believe that. I couldn’t. Instead I focused on healing & what I would do when I walked out the door. When I could, I read feverishly. Studied quantum science, I taught myself to use my mind to heal my body.

It was easy to get to know the people in the hospice well, as it was only 14 rooms, 14 people at any time. You found out why they were there, created a familiar bond with them. Of the 15 who died in that time, I watched four with the exact same diseases and symptoms as I had give up and die – three of them younger with less severe symptoms. I’ll never know why. Was it the constant pain, or thinking there was nothing to live for? Had they forgotten their dreams?

I don’t know. I would just wake up and their room was empty, sterile, as if they had never been there.
I couldn’t let their deaths affect me. I couldn’t give in to the pain or the constant terror or the stench of my own flesh rotting. Up until the moment I walked into the hospice – those years had been the happiest of my adult life. I wanted them back.
I had to keep fighting.

~ ~ ~ ~ ~

I walked out of the hospice just a little over six years ago.
All that time I have carried what happened, what I went through, on my shoulders & in my heart – and deep inside of it, I have also carried my sickness. Using it as a crutch, the only thing special about my present is my past – that I’m simply here. Alive, but not living. My life no longer moving forward the way it had been before it all went to shit, and I was left with nothing to hold onto but what I “had” done, instead of what I am doing.

I learned a lot about mind/body healing while in the hospice. I have absolutely no doubt that, as impossible as it was sometimes, if I hadn’t *known* I would live, I would have ended up just like those I watched while there – another sterile, empty room, my body carted out on a gurney behind the curtain of night.

But I still had work to do. Until I let go of that part of my past, I would always consider myself “sick”, and therefore never be able to be *truly* healthy, perfectly healthy – but it had turned into my identity. “The guy who didn’t die” was all I felt I was anymore.

At least until recently.

It feels, now, like I have a future, something to look forward to, and something that I’ve been looking *for* since the moment I walked out. Though it’s not close to enough to satisfy me fully – I still need a vehicle to get the fuck out on the road & just *drive* for days on end and find myself nowhere I’ve been before, I am creating again – I am frequently challenged, always learning, and I love designing & constructing my jewelry. And I have something to look *forward* to. I can let go of who I *was*.

The warrior awakens. There are new battles to win.

And you better fucking believe I will.

 

 

Wherever The Roads Take Me

“You’ve never been to Burning Man? Darlin’, you belong there. I wasn’t sure if I was going this year, wasn’t even planning on it – but now, I guess I am. I’ll give you a ride.”

New Orleans, 2006. I had recently moved there about five months before, the first time I had ever stepped foot in the city. Though I had seen it on the news a lot recently, nothing prepared me for what I was in person, stepping on the ground, smelling the decay and rot – but still, underneath that, there was something else it took me a while to put my finger on, a feeling… and then I realized what it was. There was a strength to the city, a spirit that even The Storm couldn’t take away. I fell in love with it instantly.

It was a strange path that led me there. My work with The Dresden Dolls had ended in Colorado, and with it the move to Boston. In thinking back all of these years later, I think it may have been a combination of a couple of things that prompted the email from Amanda. The first two were that The DD were going a slightly different direction, and also – I think The Brigade – what we called, and still call ourselves, were perhaps getting too big, too strong, especially the Boston chapter. Hell, we were even working on making it into its own entity, looking into becoming a 501(c)(3) performance group, renting a building where we could inspire & teach others.
And without question, one was my drinking. Though my work with them had never faltered for it, I was again trying to escape something dark & wrong inside of me by numbing it however I could. Still, I helped inspire hundreds of young people across the world to reach beyond themselves, to walk through their fears, to realize how beautiful they are. It was the first time I had ever, in my life, actually felt needed, felt appreciated. The first time I had ever felt loved.
Then everything I loved was ripped away from me.
Such is life. The Universe had other plans. I needed to pick myself up, to try to find the strength to keep moving forward.
In Colorado I found a good place to busk, saving up money I would need for gas. I would listen to the radio in my van at night, stretching out as much as I could in the back seat with Bean, my beautiful dog, caressing her as she rested her head on my chest and hoping sleep would come soon. It was then that I heard about Katrina and the devastation it left in its wake. It was September 5^th, my birthday. I was alone with Bean, in our van, crying.

The next morning I started emailing people, and I connected with an old lover who was now living in New Orleans with her family, asking if there was anything I could do to help them. They were fine; she was safe with her family and out of the city. I asked if there was anywhere or anyone she knew of that needed help, and she gave me the contact information to a place in Austin.
“We need people. Show up anytime.”
I smiled for the first time in a week. Within the hour Bean and I were back on The Road.

Going through Kansas & Oklahoma, driving hard, Bean asleep on the throne I had built for her in the back seat. In the black of night there was nothing but the hypnotizing dashed lines on the highway, as if nothing else existed after the reach of my headlights. No signs, no horizon, no hills or turns. Only every few hours would another vehicle pass going the opposite way. 80mph and I would close my eyes, seeing how long I could keep them shut before opening them again in sheer panic. The rapid pumping of my heart helped keep me awake. I knew how stupid I was being, but only when I thought of Bean did I decide to pull over to the side of the road and rest for a bit. The morning brought sunshine and a beautiful view that stretched for an eternity.

19 hours later I was finally in Austin.

It was an amazing place. The “Austin Enchanted Forest”, a private 3 acre wild forest in the middle of Austin, art everywhere. They had set it up with donated tents, blankets, and everything else people who had to leave their home with next to nothing might need. I was “in charge” of welcoming people, showing them around, making sure they had everything they needed.
Bean was in absolute heaven. She had an entire forest to run around in and sniff, other dogs to play with, and every night she would sleep just outside of my tent. In the morning she would poke her head inside the flap if she thought I was sleeping too late and do this kind of “rrrroooowwrr?” thing, a cross between a growl, bark, and asking me to get the hell out of bed because it was time to play, to go on our morning walk in The Forest.

I lived there for four months in a 10’x10’ tent, going from volunteering for a couple months to helping set up and performing for their yearly “Austin Haunted Forest” through the month of October. The time I spent in Austin is another story, though.

~ ~ ~ ~ ~

“I’ll give you a ride.”

Burning Man was coming up fast. Raven, the kickass woman I had promised a ride to and I started preparing. We bought our tickets, figured out the route – there was just one thing we needed.
A van.
The van I drove there in had only made it that far because I needed it to, and it had done its job. Shortly after I got to NOLA when I needed to move it for parking and found that it had a flat tire and no spare, I decided it was time to let it go to the city. Considering that it was breathing its dying breaths, I wouldn’t have felt right selling her to someone who might depend on it. The next day it was gone.

My work was busking, doing street performance as a Living Statue. I was making good money, saving every penny I could for a van to get Raven & I the 2,200 miles to the Black Rock Desert. Once I had saved $800, I started looking…

Coming from the West Coast where vans & large vehicles are plentiful and cheap, I was surprised at how few there were for sale here, and how expensive even the crappy ones were. I couldn’t figure it out – and then it hit me. I understood.
This is hurricane country. People here need to regularly throw everything they can grab into a car and bug-out, and the bigger the vehicle, the more space for family & things.
I hadn’t thought of that. Time was getting close to our planned departure.

Shit.

I worked extra hours, every day forcing my body to the limits of what it could stand, standing perfectly still. I took the suggestion that a nurse whispered to me one day and started taking aspirin to hopefully prevent blood clots from forming. At night I would look on craigslist for a van, widening the search, increasing the amount I could pay by working the extra hours.

It was grueling, painful, exhausting, but I had given her my word. I wasn’t going to let her down. Far too many people are so full of empty fucking promises, and I won’t be one of them. Hell, if I couldn’t find a van I was ready to buy her a flight to Reno – but hopefully it wouldn’t come to that.

Every night as I laid in bed and every morning, I would do a manifestation meditation. I would picture Raven & I driving up the road to the front gate of Burning Man, blasting music and singing along in a plain white van. In the visualization my window would be down all the way, arm resting on the door as we laughed triumphantly.

The days continued. Still no van. I refused to worry, and just *know* that it would work out.
Well, maybe I worried a little bit. I mean, c’mon, I’m at least *somewhat* human.

Then, finally. Less than a week before we were planning to leave, I found a van for sale in Baton Rouge, at just a tiny bit under what I had saved – and get this: It was the exact van I saw in my mind; white, plain, even a Ford. And it didn’t have a driver’s side window at all. I guess that when I saw it in my mind, every time with the window all the way down – maybe I should have visualized at least a little of the window there. Still, the Universe had given me *exactly* what I was asking for. It likes having fun with me, I’ve found over the years.

The van wouldn’t idle, the driver’s seat felt like it was one of those things in kids’ playgrounds – the animals with the big springs under then that you sat on and leaned every which way, then sprung back up headed in the opposite direction. It felt like the seat was trying to throw me out the window with every right turn I took.
I managed, with the help of a friend following me, to limp the thing home, then spent the next three days making it not only stay running, but idle smooth and strong. I ripped out the driver’s seat and fixed the base of it, checked lights, brakes, tires, fluids, everything. It would get us there. We had a van. It didn’t have a license plate, so I made one out of cardboard that looked almost real, if you didn’t look *too* close.

Then, something unexpected. An email from the seller, a nice lady when I met her. She told me of her uncle – Conrad, or “Uncle Connie”. He had lived as a homeless drunk in New Orleans, and after most of his life spent that way had finally gotten sober. He had bought the van to fulfill a dream he had – of driving West to see the ocean for the first time. Unfortunately, he had died before he could make the trip. Before he could make this dream of his – his only dream – come true.

In her email, she said that when we were talking and I was telling her my plans with the van, she felt something in me that reminded her of her Uncle Connie. She said he had a wonderful heart, a warmth and kindness to him – and she told me how much she had adored him, feeling so fortunate that they at least had a little time to spend together after he got sober. He would have loved something like Burning Man, she said, after I explained it as best as I could to her.

“This is going to sound really strange, but… would you mind helping him realize his dream? Would you take his ashes with you? Take him to the Ocean?”

As Raven & I made our way across the country, we took the time to enjoy it, pulling off to sit in silence and look out over beautiful, expansive views – and I would leave some of Connie there. In kitschy tourist spots, I would leave Connie. Native American craft shops, roadside diners, places that felt, in their way, sacred. Connie was on the road with us, living his dream.

Well, not really “living” it, being as dehydrated as he was – but at least doing it.

That year at the Temple of Hope, I left two silk bags of ashes – and then finally, on a cold overcast afternoon in San Francisco, I again poured two different piles of ashes on the sand, just a little bit below the tide line.

One, of course, was Uncle Connie’s. The other ashes were of the best friend I have ever had.

I stood there for a while, alone and holding my coat tight around me and silently crying, as I watched Bean’s ashes being taken out into the heart of the Sea.
She had always loved running in the ocean.

and I rejoice

The San Francisco heat wave, our yearly week of Summer, finally breaks & I quietly rejoice. I am not made for hot weather – or at least hot weather where there isn’t a clean ocean or river or lake or large puddle to go swimming or stomping in.

September is knocking on the door of October, and if I had to choose a favorite, I think October would be it. I remember the way some of the places I have lived changed their color, the reds & oranges & hints of stubborn green flooding the air & ground as if the world was on fire, sacrificing itself in some sacred way to become the stark, haunting & beautiful bare branches of Winter.

The energy of Change is in the air. It finds its way into my blood – and my memory.

Twelve years & four days ago I decided to follow my dreams, whatever they were & whatever it took. Shortly after I was working with The Dresden Dolls & my life changed forever.

It was on this day that my beloved Bean was hit by a train in Austin & killed, a few hours and eleven years ago.

Ten years less a week ago I received an email from Mike asking if I was interested in becoming a permanent part of the Vau De Vire family.

Six years & eight days ago I first stepped into the hospice, walking in easily enough but rapidly dying one week later as my body began to shut down.

Five years & a month ago I did what the doctors thought impossible, and walked out alive.

Four years & a month ago I talked with my Birth Mother for the first time in my life.

Nov. 23, 2013

Two years & a week ago I first spoke to my Birth Father, who until shortly before that had no idea I existed.

And now I feel the story of this man should – will – change again. I’ve already begun to kick a nine-year morphine addiction & plan to have that entirely behind me in less than a week… yet I feel that is far from enough. I want more. Monumental change. I thrive on the shit. It’s my lifeblood, my constant need. When life gets too comfortable, too predictable, I have a bad habit of stepping into a dangerous dance to bring back, to summon life’s music – and far too much is dangerous these days.

The dreams I still have, but the energy to reach for them is as scarred as my liver. I will keep moving forward, doing my best to rip through the barriers, the walls both inside & out. Both physical & mental.
The failed Kickstarter shook me. It hit hard and I fell.
It’s time to rise again. Dust myself off and move on.
I will keep moving forward.
I will live to make my dreams come true.

I see the sun shining outside, feel the sharp chill of the breeze that cuts through my window. Today will be cooler…

and I rejoice.

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…

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

The Fun Begins…soon (Kicking, day 0)

No ceremony, no ritual. Little more than a momentary pause as I looked at the small white pills in my hand this morning, but in that pause I thought of the nine years gone to the past, and the days or weeks of torture & agony immediately coming as I took my last dose of morphine. Ever.

I took the two half-full bottles out of my nightstand drawer, grabbed the near-full “emergency” pill container that I have kept for three years and moved them across the room to be placed somewhere clever later. Out of sight, yes – but I think out of mind isn’t very likely, at least for a few weeks or more.

If I could figure out the technique that always seems to work when I “organize” things so that they’re easier to find, only to end up lost for months when I actually *do* look for them, then that would be perfect – but I don’t think that will work. If I actually *want* to lose something or forget where it is, it seems inevitable that I’ll find it, even in the least likely of places.

I should figure out that backwards science & write a book about how to use & control it. I’d make millions.

It’s a strange feeling, kicking morphine after so long, so many years of depending on it. So many years of letting it control me.
I was half-expecting a huge mental fanfare – streamers popping out of my head, flame effects shooting out of my ears and little tiny balloons dropping from my nose, but alas, nothing of the sort. It was almost as exciting as putting my pants on.
Okay – as exciting as putting a freshly washed pair of pants on that have yet to acquire any dog hair on them, but still, not much more than that.

The exciting part – well, that will most certainly begin tomorrow, most likely as I race to the bathroom desperately trying not to crap myself in the 20 feet from my bed, or stopping in the middle of eating something for the same reason. It never ceases to amaze me how food can go through an entire body’s system almost as fast as dropping it – as if during withdrawals everything moves around and there is just one direct line from the mouth to the ass.

I think there should be an “Opiate Withdrawal Olympics”, with challenges such as ‘The 10 Meter Toilet Dash’, ‘The Cold Sweat Pool’ (judged by the amount of sweat the body produces in one night of attempted sleep), and ‘The Snot Sprint’, won by producing the most water-like mucus out of the incessantly running nose in an hour. Of course there could be many others – the most sleepless nights, muscle spasm gymnastics, distance or quantity vomiting, most creative screams of agony… it could be fun! Well… at least for the spectators.

And now, off to do some final preparations – give Ruby a *really* good walk, enjoy some of the last sunshine I might be seeing for a few days, clear a direct path from bed to bathroom, send letters to my Mother & Father thanking them for their birthday cards (finally) – whatever else I can think of.

I’ve decided to document the fun with pictures. Here’s one I have titled “Before the Descent” aka “Keep the fog outside of my head” aka “oh, shit.”

See you all in hell. Be grateful you’re just looking through the window.

falling apart to fall back together

Four days, and as the clock relentlessly ticks down I count every hour with a strange combination of sheer terror and wary excitement, my emotions swinging from one to the other like spectators heads in a high-energy tennis match.

Two days ago I picked up my last Morphine prescription, and as the bottles were handed to me I looked at them with a feeling of triumph. This is it.

I mostly know what to expect. I’ve done this before, 28 years ago, and again a bit more recently when my motorhome was towed with all of my meds inside. It’s not what I remember that frightens me the most, though those memories still clutch at my mind and sink their diseased claws in when I try to make myself believe that I’m strong enough.

No. It’s the things I know I don’t remember that frighten me the most. The whispered shadows of the nightmare, the parts that my mind gratefully thrust out of my memory in an act of self preservation. The small things that are lost in the fog.

The Fog.

It’s surrounded me for over nine years, from when I finally gave in to my doctor’s concern & offer of something to help with the pain that twisted my face, carving each line on it deeper like a Halloween mask of Edvard Munch’s “The Scream”… the only difference being that my screams, I kept inside. At least when I could.

With the first pill they finally went away, and I was so grateful I almost cried, even through the personal guilt and failure of feeling like I wasn’t strong enough, that I had finally lost to what for so many years I had conquered when necessary, not even taking so much as a Tylenol-3 or even an aspirin when I broke my leg skateboarding, tore apart the tendons & dislocated my shoulder when my van rolled 5 times across I-5, and hundreds of other minor bangs, bashes & aches. Those, I knew, would all pass, and all I had to do was hold strong and stand my ground. This time though, instead of fading, getting better & finally going away, the pain only increased. With each day, with each strip of flesh on my legs that caught under my fingernails while the poisoned fluid pooled and the unbearable itching multiplied, the pain grew and my conviction deteriorated…

There were, of course, many, many  times I needed them, so if I chose not to take that first pill then, it was just a matter of time before I did. When the cirrhosis decided to go to town on my body, it’s two favorite places to destroy were my legs and abdomen – and it was like a category-6 tornado in a trailer park. From the swelling to the point where I couldn’t bend my legs & had to cut the legs of my pajamas to be able to squeeze into them to the itching so horrid from the poisons my liver couldn’t process I cut myself open with my own fingernails, to the pressure from the swelling in my abdomen & legs so severe the fluid actually started pushing out of the skin on my calves and pushing my intestines out of my navel, to the pain from the occasional infections that slipped right by even the highest doses of morphine – I was certainly grateful for it at times…

 
…but as the months & years continued and the pain slowly subsided, when I began to wonder and doubt how necessary the morphine was anymore, I knew I was screwed. Sure, there was still the mild constant pain from my calves that never fully healed or grew back more than the thinnest layer of protective skin, and there was still the occasional breakthrough pain in my abdomen – but nothing I thought – that I think – that I can’t deal with. Nothing so bad that my body’s own pain killer can’t handle it. Nothing so severe that the mind/body & quantum healing practices I discovered and used in the hospice and the surprising strength I found in my mind can’t handle it.

There’s only one small problem. My brain has completely shut down all of it’s own natural pain killers. Feeling unloved & un-needed, the receptors that normally block everything bad have gone on to other tasks where they feel more appreciated. I wish I knew more of the science of it – it’s not entirely endorphins or dopamine but a combination of the two along with some other things. That’s what I kind of know. I know the human body is fucking amazing. We all should kiss ourselves every day and thank it for all it does for us.

I know without any question, without the slightest hint of doubt at all – what I know intimately – is that the human body is in constant pain. Anyone who hasn’t experienced the feeling of not having any help at all from your body to dull pain cannot even come close to imagining what it’s like when you feel EVERYTHING.
I don’t feel as if I can explain it well enough right now, nor do I want to.

But I want my body back. I want my mind back, and all the things working as they should  again. I want to feel alive again- with all the pain, passion, love, joy, excitement & fear.

So here we are, nine years later. And I’m fucking done. Things need to change and that is the most obvious one. The feeling of the morphine sticking felt thorns of stupid into my brain is over – or will be soon. First, I need to pay for those lost years, and I know I will – dearly – but every second will be worth it. Nine years of mental fog, nine years of suppressed emotion – the passion, love, excitement, joy, happiness and everything else a person feels on a daily basis has all been muffled, like my mind & heart trying to speak to me through a sealed door.
(Hm. That’s an interesting mental picture.)

On September 21st I will take my final dose of morphine, hopefully for the rest of my life. On the 22nd I’ll begin to feel the withdrawals. They don’t come at once, of course – they gradually build, if I remember correctly, over about three days – but it’s like sticking your hand into a put of 75 degree (Celsius) water. It’s not boiling yet, but it sure as hell isn’t pleasant.
This ought to be interesting.

But WAIT! That’s not all!

To make things completely absurd, I’ve also decided to quit smoking at the exact same time. I mean hell – If I’m going to change my life, I may as well just jump right in with both feet. Get rid of all the things that I’ve been wanting to quit.
In a way I suspect that it will give me something to laugh at myself about – like when you stub your toe and hop around like a fool, feeling like a dumb-ass and laughing through the pain – except in this example I’ll be writhing in pain, wanting a cigarette, and laughing at myself because only someone who is a complete and utter fool would consider quitting both morphine and cigarettes at the same time, and I’ve always held the self-imposed title of “Fool” quite proudly at times such as this.

But there’s something else which is more of an experiment than anything: I have this notion that kicking morphine AND cigarettes at the same time will somehow drive the point that I am now (or will be horribly soon) a non-smoker home a bit harder, because I know smoking is going to be the hardest one in the long run – and I’m in this game to win. So far, I haven’t died 100% of the time, so I’m doing pretty good I think.

When the door is opened, when the fog clears and for the first time in nine years there is no drugged buffer repressing all of the beautiful and horrible things inside of me, I suspect it will be one hell of a ride as I become accustomed to feeling *everything* again – I mean hell, in preparation I’ve cut down the regular dose of 60 – 90mg through the day to one 30mg pill in the morning, and was nearly bawling during parts of the movie “Pete’s Dragon” I watched earlier tonight.

As I said, it’s going to be one hell of a ride. It should make for some interesting blog posts as well.

I should probably apologize in advance to anyone I offend, but honestly – if you get offended, it’s your trip, not mine. Fasten your seat-belts, put on a couple extra layers of skin – and Lighten Up. Things are likely going to get a bit crazy.

Wish me luck.

And please – I’d like it if you commented, if you wish. It will help me not feel so alone.
Comments & ‘likes’ left on my WordPress blog are MUCH more appreciated than those on Facebook, as well.

Four days until I begin to rip myself apart. I’m excited to see what the rebuild will look like.

And I need to figure out whaat kind of art project I’m going to make out of these:
(I haven’t counted them, but I suspect I have about forty that I’ve saved over the past couple years = when I remembered to.)

 

 

behind the smile

Where do you say what you can’t?

They tell you to be buoyant. They tell you to be enthusiastic, strong, confident in the words you write, the words you share and hope the world will see. When people visit or hear about my Kickstartercampaign, they don’t want to read my woes or worries.

For now, I put on a plastic smile like a McDonald’s server and don’t show the terror. For now I don’t say what I am truly feeling.
People don’t want their bubble popped. They want to feel confident in my project, to be lifted higher in the buoyancy of my words, as forced & manufactured as they may be at times.

I want to make them happy. I do care. I try to give them what they look for, and I hope by writing the words I will also be lifted.

I can’t write “If this campaign isn’t successful I’ll probably die before the book is finished”. As true as it is, threatening people to support my campaign probably wouldn’t go over too well, y’know?
Still, boiling in this head is the knowledge of what will happen if this campaign doesn’t succeed. The things that only I have known.

Until now.

THIS is where I can scream. Most the people I know on Facebook don’t take the time to read anything over a few sentences, regardless of what they say. Here I find a sanctuary, either real or imagined. On WordPress.
This is where we ALL can be real, be vulnerable. This is the shower we sing in.

My book is all I have anymore. All there is left in me to give. Due to the way this disease works and what it’s done to me I can’t really perform, can’t work. I don’t know the days I’ll be too exhausted or in too much pain to do more than pass the day in bed. Though those days are less, they still happen – and the rest are filled with such a growing hatred for the life I’ve been living since I was released from the hospice that I know with certainty that it’s something I can’t go on with.

The book is/was/will/would have given me a reason, a new breath, a purpose. To go back to living each day worried about getting herbs, to go back to each week with the only thing I can focus on is begging more friends for money to afford them is no life at all.

Every waking moment I’ve had the thought of how my life would change to keep me going, to soon be able to live a life that matters, to have a purpose for each breath.
To enjoy life. This is what the success of the campaign would offer me.

I have envisioned myself a thousand times or more waking up for the first time in years with the excitement of living, of having something I needed to do besides beg for more money. I would sit in random café’s writing, sipping coffee for the flavor and remembering with clarity the amazing life I have lived, smiling to myself as I lifted my head & turned to look out the window and knowing that I’m doing something good. That I once again had value.

I would sit at my Mother’s dining room table, facing the back yard wo I can watch Ruby play, run in and out of the door with the dog my mother and I would find for her in a rescue. She says she wants one and I could get it for her, help her take care of it. Help take care of my Mother. She would come home and ask me about my book, and I would share the stories I had written that day. She would get to know me and I her. We have 48 years to catch up on.

I would hold my head up, a smile glinting off the green in my eyes and hinting on my lips. People would know again. I would know myself again. This is why I am. This is me. I would be full and in love with life. It’s been so long, so long – but I woke, rang the bell above my grave and purpose came to dig me out. I sucked the fresh air into my lungs and this empty heart was filled.

They would read my stories, my life laid bare, naked for them to see and they would see themselves. They would find the parts, the lines that made them stop & look up with a sudden spark of understanding that it only took a decision, that the past didn’t matter and all the smallness they felt would be washed away in the ink of my words staining their face with a determined grin. They would mark the pages, underline sentences, read it again and maybe buy a copy for a friend or two. They would write to me and I wouldn’t feel so alone anymore.

This campaign needs to succeed. I need to write my life, give it away.

The heart inside of me is weary, vacant. I say I love people hoping that in the spoken words I will remember how. The smile on my face is an advance taken from when I can feel it again, when my heart fills with the knowledge that my life has changed from the barren desert it has become. Beg for money, get herbs. I’ve been kept alive by the possibility of the book, the knowledge that when the campaign succeeded it would be written. Take it away and I have nothing I need to live for and I need a reason.

I try to write with an empty heart and find all I can hear are the sucking noises like those a straw makes in a cup that’s been drained by a ravenous thirst.

Also haunting me is a thought.
In September 2010 I walked happy & full of energy into the hospice/respite that I was supposed to spend only three months in. Up until that moment I worked every day on my magazine, setting up interviews, making the site better, writing reviews and each morning stepping out of my motor-home with a smile. Even though my legs were bleeding, swollen, leaking the poisoned fluid my liver couldn’t process and in extreme pain, I still walked with purpose and pride to the café knowing there was something I was needed for.

I wasn’t able to work on CultureFlux in the hospice. I had been doing fine (relatively speaking) before I walked in, living in poor conditions with no money, food, and only enough water to wash my face in the morning – but I had a reason to go on. I loved being able to help other performers through the magazine and I loved giving them a voice.

Within a week my body began to shut down. My skin began falling off, hair coming out in clumps, and I was barely able to walk. One week.

What will happen if the campaign doesn’t succeed? When I don’t have the dream of writing & publishing the book to keep me alive anymore?

The herbs have kept me healthy, but it’s purpose that keeps me alive. From the edge of death in the hospice to the 4.5 years following, I had two things to live for: Finding my Birth Mother and giving this book to the world, hoping my life will inspire theirs.

I have found my Birth Mother.
For anyone who reads this, thank you for letting me vent, and don’t get me wrong – it’s not always like this inside my head. There are still many times when I realize it’s only the 6^th day with 5x that more to go, and anything can happen. Hell, Oprah could see it and announce it to the world! It could go viral on Youtube! Anything! The most important thing I need to remember is to NEVER GIVE UP, even as much as I want to and as hard as it can be to dredge up the energy to go on. WE DO NOT GIVE UP.

http://bit.ly/NGGKickASS

I’m going to keep on fighting like hell for the success of this campaign, to make this dream a reality and again have my heart filled with purpose and passion.

It IS possible, and I’ve come from behind to achieve my goal more times than I can count. I mean hell – isn’t that what we do with EVERY dream we realize? We are WARRIORS, and this is what we do!

For anyone interested what all the above is about, here’s a link to my Kickstarter campaign! I wouldn’t mind at ALL if you supported it by making a pledge and/or shared it as far & wide as you can – you would be my new favorite person!
Just – don’t include the above, okay? (winky face)

And when you go there, please take a second to check out the update – I was *amazed* with what people said and want the world to see it too!

To all out there in WordPress land – thank you for being here for me. And thank you for not charging for my therapy.
Any comments of support or suggestions on how

 

 

 

Found Things of Ass

For those of you fortunate enough not to be on Facebook, they have this thing. Among their many other things. Things they have.
It’s basically a walk down the ‘ol memory lane, showing what you posted on this day back to the time you joined. When you think about it, it’s kind of creepy, but also strangely comforting in the way that it reminds me of an incredible, absolutely and frighteningly brilliant, beautiful woman I dated for a while in New York, who remembered EVERYTHING that I said or did. Usually it was used to point out how incredibly wrong I was, during one of our arguments, but on occasion she brought up things I did that were all snuggly and nice, as she rested her head on my chest in the rare times that one of us weren’t at school or work, and actually together. (I was working about 70 hours a week managing a kitchen, and she was in law school, working on the weekends. We had lovely dates that consisted mainly of collapsing in each others arms.)

Actually, this facebook thing is nothing like her – but at least writing about it prompted me to think of her again…

ANYWAY, today’s was something I posted on Facebook, and strangely enough not here. I do that a lot, but I think that soon I’ll completely reverse it and post things here, not on Facebook. You deserve them more.

but AS I WAS TRYING TO SAY, this popped up and I thought it was kind-of good and kind of funny, so I thought that I would share it with YOU, my wonderful and faithful blog readers. (Obviously, those who don’t read this will miss out on how beautiful & faithful and wonderful I think they are, so to those reading, just between you & me – you ROCK – but c’mon, comment more, okay? I like that shit. I get lonely – and it inspire me to write more, too…)

SO – here’s the thing I posted there but not here. It was posted when I was in a shitty respite place after an infection that made it pretty much impossible to walk due t the pain, for reference.
I knew that eventually I would get around to it. Thanks for your patience.

kSea Flux

July 16, 2015 at 5:30pm · San Francisco ·

Nearing the end of day 9 of the sore-ass marathon. Gods, these beds are horribly uncomfortable. The different shifts and positions you find yourself in for a brief taste of comfort would make an interesting study – comparing the healing speed of someone laying in a 3rd rate hospital bed as compared to the bed I recently left at UCSF, which had so many positions you could swing the thing – pivoting feet up, head up, bringing knees up & down as well as of course your back position…

My theory is that the person in the bricksoft crap bed (up, down, back, legs, with a built-in ‘Sadism’ setting that is permanently on) will be the first one to heal, as the constant position changes and just sheer will and fight to finally get the hell out of this thing and tend to his poor, flattened ass.

In any case, those are the results of this particular one-person case study.

I’m doing what I can to heal – physically & mentally, and last night was able to sit on the edge of the bed for 30 whole secons before the pulsing & throbbing pain in my calf & ankle grew the point of sternly suggesting I bring the leg back to horizontal – but hell, it was progress, and I’ll be damned if I’m going to sit passively & wait for the healing to happen magically. (Actual Dr. care is surprisingly rare & brief.)

There’s a rumor floating around that I’ll be discharged early next week, ready or not. I’d rather be ready, or as ready as I can be.

I’m going to need to make some changes to my apartment when I get home – so be prepared for a purge of some things that you may like. I’ll be giving them away…

All in all, I’m mostly getting better – I always do & always will, but now it;s a race against time and my distaste for walkers.

Now, my ass has taken over my train of thought, so I must bid a temporary farewell.
Never thought my ass could hijack my brain, but then again, I’ve never given it much thought.

~ ~ ~ ~ ~

And then it goes into thanking people about helping me with the herbs I can’t afford to get myself due to the $200/month I get to try to survive on from disability… but you don’t want to hear about that, even if not having the herbs I needed WAS the reason I almost died because of the infection & would have prevented it in the first place.

Okay, back to work on my book project. It looks like the Kickstarter for it is actually gong to launch THIS WEEK – and I’m fucking terrified.

Have a beautiful Weekend – and keep dreaming! Love you guys…

OH! And if you could do the whole “Share, Follow & Like” thing… yeah. I really like that stuff, and would appreciate it. It gets lonely here sometimes.
Lots of times.

 

Through the Fear

There are times as the moment gets closer where the courage to go on vanishes.
I try to find it – on the pages of books I’ve marked, in things I’ve written before, in memories of who I was and what I had inside when I was laying in bed dying.

Sometimes I find it. Sometimes not.

Yet still I go on, even though I know full well what’s at stake. What the cost will be if I fail.
I go on because I can’t live like this anymore, with the only thing keeping me alive being the struggle to stay alive. The magick and enthusiasm I once had for that is long gone, and has now become little more than a chore wrapped in futile redundancy. If trying to stay alive is the only reason to live, where do I find the inspiration to go on?

I know what the answer is, and that’s why I’m terrified. The book, my book, is what I need to break me out of this prison. What I was meant to do, perhaps even why, against the most insane odds, I was kept alive.

I can help people. Inspire them, entertain them, make them laugh – maybe even cry. I might even be able to change their life, and in doing so, change mine, back to a life filled with purpose, filled with value. Filling my heart again.

And that is why I’m afraid. There’s always the chance that my Kickstarter campaign won’t reach its goal, and if it doesn’t – nothing happens. I hang my head & try to go on, not having what is needed to get the book done or published, instead going back to my main job being begging for money for the herbs I need… but I don’t think even the best of herbs will help without the enthusiasm to keep living.

I know I shouldn’t be writing this. I need to be cheerful, upbeat, inviting – not depressing – but this is me, and many years ago I promised that I wouldn’t sugar-coat anything I write, I won’t bend to try accommodate the increasingly fragile, absurdly easily offended people whose “individual” thoughts are only what everyone else is saying on Facebook.

Fuck that.

This is going to happen. I will succeed. I’ve never given up on a dream before…

and I’m not going to start now.

I will find the courage, or if I don’t – I’ll keep going without it. Life is far too short & valuable to forsake the person I am supposed to be – the person I lost in the 6 year fight to stay alive.

I’m tired of fighting. It’s time to instead let this happen, and again know that whatever happens is exactly what should happen.

It’s time to trust the Universe again.

We MUST keep moving forward.

Too Far to Fail Now

Twelve years ago I jumped off a cliff & gave up everything to follow my dreams. I lost my apartment, my car, slept on couches & went hungry – but refused to go back. (As long as my dog was fed!)
Then, my wings unfolded.

I did things. I had incredible adventures. I helped people overcome their self-doubt & perform in front of hundreds of people. Volunteered for Katrina refugees, was one of the first street performers in New Orleans after The Storm. Created an award-winning magazine, produced events, did more things. Met amazing people.
Fell in love.

Then my body decided to die. My unrealized dreams & I disagreed with it, & The Battle was on… and now I’m writing a book about ALL of it.

This book is going to rock your world. Hopefully, it’s going to rock THE world.

It won’t likely be like anything you’ve read before. It’s an authentic, raw, funny, honest, moving and inspiring story of my past twelve years, and how I turned a mundane, unremarkable existence into a beautiful, useful & helpful life. A life that I am finally proud of…

This book is about remembering how to dance with life. About not letting life happen to you anymore, but making it happen foryou. It’s for the dreamers, the believers, those that thrive on the hope of fulfilling the potential we’ve all been blessed with.
And it’s about love.

I just need to get it out to the world.

I’ve come too far to fail.

My Kickstarter launches in 13 DAYS. July 6th, Wednesday.
I’ve crunched numbers, & I fear that I don’t have contact with enough people to succeed in reaching my goal.

I’m going to need your help – not only to change my life, but most importantly inspire others to live theirs.

LET’S CHANGE THE WORLD!

Sign up on my new site – save time & get updates you would otherwise miss! (No flooding – promise.)

www.kseaflux.com

LOVE YOU.

IF you are LGBTQ…

If you are a gay, queer, transgender, or non binary person and are scared to go somewhere, I will go with you.

If you are being harassed or mistreated, I will stand up for you.

I may not be gay, queer, transgender, or non binary but I believe you are entitled to feel safe and I will do anything in my power to help.

This is a direct quote from my friend Raven Ember, from a friend of hers.

But I’m saying it too, and I mean every fucking single word of it.

email: Casey@kseaflux.com