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.

 

 

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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.”

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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.

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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.)

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A little Everything

Another birthday quietly comes & goes with the slight disbelief & perhaps even small discontent that I made it another year.

I wake up late this morning, make my coffee, do the morning stretches to try to regain a scrap of the flexibility that, along with my strength, was eaten away during the 18 months that I spent in a hospital bed, and after I adjust the pillows climb back into bed, set the laptop on my lap & start to scratch words. I’ve found the bed is best – at least for the swelling in my legs. Keeps it down.

A conversation yesterday with a wonderful old friend & former lover about everything under our suns, and ending with tentative plans for a cross country trip in Spring – renting an RV and taking a few weeks to cross the country to her home in upstate New York. Likely plans. Almost definite plans.
I need to do something. Something that *means* something. The Kickstarter for my book crushed me as it fell to nothing but rubble of hopes, dreams & the plans I had which would have changed everything in my life, given me a purpose, a value.

I wonder why my life, my happiness depends so incredibly much on doing something, creating something, helping someone – I know that there are many who are content to live their lives in a mundane existence, and that’s all they seem to need. They seem to be happy – but that’s not me.  That’s not me.

I need to taste everything, experience the deepest pain and joy as I can, and truly feel PASSION, feel alive in this world, feel like I’m more than just another inconsequential pawn.
I need to breathe the fervent, blood red breath of life deep inside me, feel it fill my lungs, my heart, my soul, and match it with my own.
I need to swim to the deepest dark depths of the sea and feel at home there with creatures that understand that all I want to do is learn. Where are my fucking gills?

Where have I gone? Where is the music that I once danced to, the fevered rhythm of life? Have I fallen prey to my own sickness? Have I given up?

I can’t. I want to. I can’t. I’m tired. I can’t. I can’t.

Sometimes I think some of us live only to beat the odds. To be able to say “This is what I know.” And, just maybe, help someone else. Help them open their eyes, to see a little bit more beauty, to believe a little bit more in their dreams. To see how perfect we can at least make the world around us – or at the very least make it better.

I am not more courageous, not any more special than anyone else. I live in the same world.

I’ve just seen more of it than most – and because of that, in spite of that – I’m willing to keep fighting to make it a little bit better.

A life for a life

 

I look at this page & it stares back at me, a subtle, defiant edge to the font that would likely go without notice if I wasn’t looking for it – but oh, it’s there.

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Some reading this may think that it’s my imagination, that I’m creating it in my mind, that the certain lean, the extra hint of teasing, judging serif in the font is something I’m making up so I can blame something other than myself for the distracted words that my fingers put on this page, but I know different, and besides, what you may think of my sanity has no consequence.
On with it.

I part the dense fog that has surrounded my mind ever since I began working on my Kickstarter campaign, the words listening for the passage that will allow them to avoid the sharp rocks in these treacherous waters & lead them safely to this page. From the tattered pages of past writings I tear away the tangents I had followed when the Sirens of Kickstarter took away my will & made the words whine and shove those in my ears, muting the songs of the campaign. I prepare my mind to find itself again, to write what’s been pushed back – but never forgotten. The thoughts still storm, and it’s time to dance in the rain again.

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I will succeed. I will triumph. I’ll do a happy dance!

As profoundly important as the success of this campaign is to me & my life, as much as I know it can and will change the lives of others, I need to remember that somewhere not far behind the ever-present thoughts of dong all I can to make my campaign succeed, there is a soul, forgotten & forlorn, who still has things other than the thoughts necessitated and consumed by Kickstarter to say.

And that being said, there is only a little more than a week left of my campaign – and this book needs to be finished, published & given to the world!

Please – pledge, SHARE, and understand the profound importance that this dream holds for me – I have never done anything that has meant more, including saving my life.
The goal of writing & publishing this book is what kept  me alive – what gave me something to fight for.

NGG THUMBNAIL8.8

This book kept me alive – and now, it’s time to let my book live!

Click the link below, contribute & share – please – and thank you!

http://bit.ly/NGGKickass

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…

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…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.
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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.

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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…