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.

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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…

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.