Saying goodbye to my little friend

It’s always there, reminding me. Reminding me that I’m sick regardless of how well I may feel, reminding me that there’s something wrong, something that would never let me believe, even for a moment, that just like nearly everyone else I could relax.

Every time I looked in a mirror it made certain I wouldn’t forget.This monstrosity. This hideous thing sticking out of my abdomen.

Every single time I saw a woman that enticed me – a playful look in her eyes, a laughter that sounded like music, the language in her body and a beckoning gaze  inviting me to approach, I would begin to smile inside with the hope of putting an end to this everlasting loneliness – then turn away.

What if we ended up liking each other? What if we laughed at the same absurd things, our eyes sparkled a bit brighter as we looked at the other… what if one night we went home together, and it came time to take off my shirt?

Of course I would have warned her, told her about it, but hearing and seeing are two entirely different things. When she actually saw my umbilical hernia, that I have a tennis-ball sized mound of flesh & intestines sticking out of my belly that looks frighteningly similar to a scrotum, what then?

For years I’ve been destroying any possibility before it began. For years I’ve been pleasing with the surgeon to cut me open and fix it regardless of the consequences, knowing that they couldn’t be worse than what I’ve been putting myself through.
Knowing that they couldn’t be worse than facing the near-guarantee of a lifetime without anyone special to share it with, knowing I would never get close enough to let myself fall in love again. Knowing that this loneliness would forever be a part of me…

Now, over six years of begging & pleading, I am 18 days away from the surgery I’ve wanted all this time.

He finally agreed.

Sure, it’s risky as hell for me, with a roughly 30% chance something may go wrong and I’ll die, but weighing the risks against spending the rest of my life afraid to even approach & flirt with a woman? I’ll take my chances. I really fucking miss being in love.

Eighteen days.

Shit. I need to try to remember how to actually talk, flirt – and date  again!

Maybe this surgery isn’t the best idea after all.
(Just kidding – FUCK YEEAAH!)

Just sit. Be quiet. Think.

Though I don’t do it as much as I used to or would like to now, it is still one of the things I relish most in life – having the time to do just that – or making the time.
But admittedly, as much as I love it, it’s not something that comes easily to me, and never has. My mind just simply doesn’t work like that. My thoughts don’t organize themselves into something that I can easily follow or make sense of, and my head seems to enjoy dancing around from one thought to the next, as if they were in that lottery-ball machine, bouncing around & randomly shooting up the tube into my awareness.

Sometimes I can let them go – just a passing thought of little consequence, or something that I can figure out or decide upon right then and there, gathering a bit of logic & other things I may have learned along the way – but then there are others, like the one I only just had – and the only way to play it out in my head so that it makes sense – is to write. It’s the way it’s always been for me.

Lately I’ve had a number of people comment on how much better I’ve been looking – how much healthier. Enough people to make me wonder why, and try to figure out if anything has changed, or maybe they just haven’t seen me in a while. Probably a mixture of both, but answering it so easily with absence – well, that’s not going anywhere. That won’t help anything or get me thinking about a path of possible growth, something that has happened that I can continue… But if anything has changed? Now that could be interesting – so that’s what I went with, as well as I could inside of my head. And I found an answer.

I’m creating again. I have a purpose again. I’m doing something I love, and best of all – making people happy.

And, in return, my health has improved, feel happier, and with my chainmaille jewelry business, there seems to be, as long as I don’t let myself procrastinate it all away or find a place where I’m “okay” but not where I want to be and call it good enough – there is almost unlimited growth potential. I’ve even figured out a way to move beyond the terror of not doing every little thing myself.

I’ve found, however, that it’s fragile. I have such a fucking frustrating propensity to procrastinate, to put things off with some of the best excuses imaginable, that what I need to do doesn’t get done – and I’m only happy when it does.

I need to remember that. I’m only happy when things are moving forward, when I’m growing, when I’m stepping out of comfort into something I’m terrified of doing –  because that’s the only place I find passion. Only then do my eyes shine the way they used to, and only then… only then, I believe, does my mind use the power it has to heal my body, because it has a reason to.

Why else would it have been that I was mostly fine – able to walk the 3/4 mile to the cafe from my motorhome to work on my magazine every day for months – and then within the first week of being in the hospice with nothing to do, my body decides to completely shut down?

There’s something in that – and now, if you’ll pardon me, I’m going to get my ass in gear and get to work. I have a business that I love to make grow, and a life to continue to live.

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.

 

 

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 6th 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.

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.

 

Still kickin’

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

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

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

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

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

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

That’s a LOT.

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

 

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

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

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

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

Do something good.

A Valued Life

I move forward, taking care of things so I have the ability to do more.
It seems to be the way, at least in part, that this whole “Life” thing works – but as always, I’m just guessing.

I heard an interesting analogy once, which I try to carry with me so as to remember not to be afraid. It said that each person, if they drew a stick figure of themselves on a piece of paper, then a circle around it, that inside that circle could represent the experiences they’ve had, the challenges they’ve overcome, and the growth they have achieved. Frequently, there will be something that occurs outside of that circle, and that if they step up, reach out, and find a way to take care of that challenge as well, then their circle of experience grows to encompass that which was previously unknown as well.

This makes sense, as with each challenge, if approached well, causes us to grow in a way that is so much more than that one challenge, as we need to face all the doubts inside of us in order to reach out and take care of it and move on.

With that in mind, and the memories of the challenges I’ve met, makes me realize that I can do anything.

I just need to remember that as I wake up and look towards what each day may bring – the beauty, and the pain, there is nothing that can compare with what I’ve already experienced and stepped through. My life has been amazing, and has given me all the tools I need to progress further, to always grow, to let my goals & dreams come to fruition.

There is so much I want to do.

I want to give everything I am, and everything I will become, so that I can help in the way I’ve been helped before, and offer the wisdom I’ve had to find for myself – when there was no one around to offer me theirs.
I want to help soothe the people who hurt; to give them validation, and a way to look at it, find the strength inside themselves, and walk through it.

Like walking through a waterfall.

Dry off. Move on. There is a world waiting for you. A world that needs you.

“If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any minute.” – Marcus Aurelius

I am focused on my book project so much lately because that is, in many ways, what will help me to achieve the dreams I have – to entertain, to inspire, to help, to live a life of value – and show others how to do the same.
To live a life they love.
It’s amazing how much easier life is when you simply change the way you look at it.

Help.
Create.

Travel.
Have an incredibly rich and even more satisfying life.
Kick ass, and
Be able to take care of my Mother.

These are the things I want in life.

Of course, I wouldn’t mind becoming a world famous author either…
But for the time being, I’ll be thrilled with just being able to afford to publish my book.

someone else’s liver

 

There are times, very few, when I think that it would be nice to live by a quiet freeway. Not quiet for the amount of traffic, but no impatient bleats of car horns or sirens – only the whisper of the tires on the asphalt, the quiet hum of an engine already at speed. The sounds of the cars & trucks going by, of people going somewhere – I could make up stories of their travels, or even close my eyes and join them.
Going somewhere. Anywhere. Back where I belong, on the road.
I think that would be nice… but that has nothing to do with yesterday’s consultation with the surgeon…

Everyone wants to out a new liver inside of me. It seems as if I’ve used this one up, and now all I’m doing is squeezing the last little bits of use out of it, like a tube of toothpaste that you forget to replace so work desperately to get the last bits out of the old one that you know are in there. I’ve squeezed the use out of this one.

I’ve been against it for years, knowing that, if given the time, herbs & mental focus, I could make the liver I came with as good as new – or at least somewhere close. Close enough. I’ve known I could reverse the cirrhosis and make it work like it once did, instead of the way it’s not working now – being so scarred and clogged that it has trouble filtering my blood anymore, and instead of the toxins getting flushed out, they’re being pushed in – into my abdomen, into my legs, into any extra space they can find or make.

It’s a constant battle to keep them moving out of me with herbs, but I have been – for years. I’ve proven that I can, at the very least, maintain – but I’m a determined pain in the ass, and I want to do more. I don’t just want to put bondo & a coat of & paint on it – I want to pull all the dents, polish them smooth, make it as good as it once was using the parts I came with…

And I wonder if I’m being so goddamn stubborn that I’m cutting my own throat.

The thing is that a liver transplant wouldn’t be any kind of savior – it would simply replace some challenges with others, and I would *still* have the hernia and my guts sticking out of my navel.

As I was writing this I took a small detour to look up the pro’s & cons of a liver transplant, and found myself on the blog of a woman whose husband was cured of stage 4 liver disease with critical cirrhosis. (Note to self: I need to remember to get my MELD score-the number that says how screwed or unscrewed your liver is  –  forgot to write it down yesterday, but I think it was 24…)
With a regimen of specific herbs & the addition of some “Detox Water” machine, he was able to completely reverse his cirrhosis.

 

It gets increasingly difficult to keep moving in the direction that you know, deep in your heart, is the right decision – especially when there are those people who don’t know any better, and who keep pushing you towards an “easier” way out. The surgeon I saw yesterday – a seemingly kind and genuinely caring person, made it clear that my liver had taken leave of its responsibilities, and without a transplant I would die long before this “young and seemingly very vital” person needed to.

He made that clear many times.

But there is one thing that he knows absolutely nothing about – and that is my will to live. He knows nothing about the strength and courage the warrior inside of me can pull out of my ass when I need to.

Sure – a liver transplant would be easier and a hell of a lot cheaper – but it would also guarantee that the rest of my entire life would be controlled by it. I would forever need to take medication so my body didn’t reject it, and though some things would be better in what I could physically do compared to now (not that hard to achieve) – there would always be limitations.

When I was in the hospice, dying, I *KNEW* that with the herbs I needed and a lot of work, I could live. I knew the power of mind over body… hell, mind over *anything*, and what could be accomplished & created with my noggin’ if I used it well.

And I still do.

Fuck the easy, half-assed way out. It’s just a different way of being locked in, caged and chained to a lfetime depending on Western medicine.

Somehow, some way – I’m going to do this myself.

Again.

I hope that if enough Western Dr’s see what’s possible with their OWN eyes, then maybe – just maybe – their minds will begin to change as well.
If enough people with liver disease see it, it just might change the world.

Besides – I’m pretty sure someone else needs a new liver more than I do.

I can’t do it myself though. The only reason I lived through what I did was because of the generosity of the people who believed in me, and who supported me financially, allowing me to be able to get the herbs I needed.
If you want to help support what a few Doctors & nurses have *already* called a “miracle”, and be a part of creating a new one – I need your help.

My paypal account is ksea@culturefluxmagazine.com, and you can also support me (& get more information) at the GoFundMe page a friend set up at this link: https://www.gofundme.com/fightingkflux
I orefer Paypal though – GoFundMe takes out nearly 10% and takes up to fve days to show up in my account. Paypal is instant with no fees.

Thank you – and keep watching me kick ass!

powerless & hoping

It’s early, though not as early as I prefer to wake up these days. The sleeping dreams were just too interesting, so I added an hour to playing inside my subconscious. After all, with our unconscious mind controlling 95% of our bodies – I want to make sure it has fun when I can.

There’s little worse than an unhappy subconscious; I’ve seen it in far too many people. I set the alarm on my phone an extra hour ahead.

Stumble to the kitchen, make my single cup of coffee, eat a small bowl of cereal then take me & my coffee back to bed. On the way I grab a few small treats for Ruby & give them too her. I’d imagine that she gets that morning stickypaste mouth just like humans do – or at least her breath smells like it.

I light a cigarette, take my first gulp/sip of coffee, and attempt to adjust my laptop table-thing so it isn’t resting on or pressed up against my hernia. Using my guts as a support just feels wrong in many ways – only one of them being the physical discomfort.
Looking at the clock a lot this morning – something I don’t like to do normally, but need to today. I have my second consultation for the hernia surgery in a couple of hours, & need to make certain I’m not late.
Walk Rubes, pack my notebooks & laptop in my bag & walk through the human detritus down to the bus stop on Market, armed with a mouthfull of “Fuck OFF’s” for the crack dealers who can’t seem to realize that I’m just someone going somewhere who doesn’t want to be bothered. Each time I consider tying or taping a sign to myself saying “NO, I do NOT want your fucking drugs, and if I DID wan’t drugs, I sure as hell wouldn’t get them from YOU” – but I’m thinking that would be too much – as they would probably only see it if I cut eyeholes in it & taped it to my face, and then I would have to wear it ALL the time, as they would never recognize me without the sign.
But I digress. (Maybe I think about this too much?)

The first meeting with the surgeon, three weeks ago, was filled with him telling me how insanely risky performing this surgery on me would be – IF he agreed to do it. I could die in so many ways it would make a hit-man for the CIA jealous, just for the creativity of it.

The surgeon was kind enough to describe some of them in enough detail for me to understand… but honestly, this falls solidly under “I would rather die trying than not try at all.” – and I despise the fact that it’s not my choice. Though if things go wrong I don’t want him to have to carry the weight of it, I still should be able to sign some sort of Kevorkian waiver saying that it’s entirely my choice & my responsibility if I die.

I think I may have a very, very small glimpse of what women must go through with people trying to control what they do with *their* bodies.

9:15am. Need to leave in an hour.

At the first consultation the surgeon kept saying that he’s not saying he *won’t* perform the surgery, which gave me a glimpse of hope. Thinking that that was the only time I would see him, I gathered up all the courage I had & told him how much it prevented me from living my life – from being *me*. I did my best to explain to him that it’s far from only an inconvenience or 20,000 negative vanity points – that it truly made me feel much less than the me I built. I couldn’t perform, couldn’t help build things, couldn’t this & couldn’t that – and all of those things were who I *was*… and as I was talking to him, I guess all of the repressed crap I’ve held inside came out, and I broke down crying, my words coming out in-between sobs, this 48 year old man blubbering like he was a boy continuously beaten up by the school-yard bully but helpless to do anything about it. That was SO not in the script.

As good as it felt, it was embarrassing, and seeing him on my way out of the ward I apologized for losing it. “That’s okay, it told me a lot.” …and then he proceeded to make another appointment for me a few weeks from then, surprising me – and giving me… hope.

It all comes down to today, I think. I’ve worked hard as hell, taking a ridiculous amount of herbs to ensure that I have as little fluid as possible in my abdomen, sacrificing food for herbs for this exact reason when I needed to choose between the two. I’ll still need to maintain, hitting them hard before & after the surgery – IF it happens… btu I’ve done all I can up to this point. Worrying about it would be a waste of imagination… I just need to get there on time, so I’ll end this now with a simple request – send some good energy my way, if you will. I don’t believe in “luck”, but some positive “Stick kSea’s insides back IN” energy would be well appreciated.

And of course – and always – any help you can offer for the herbs I need to keep up, as I’m completely screwed for herbs & money right now & could really use a LOT of help.
Paypal ksea@culturefluxmagazine.com ~ ~ ~ Thank you!

I’ll let you know how it went when I can – but gotta fucking BOLT right now…

Love you!

out of my head

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

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

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

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

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

I need to remember that lesson.

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

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

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

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

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

 

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

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

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

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

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

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

ON   WITH   THE   SHOW!

Getting out of the way of myself

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

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

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

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

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

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

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

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

and then I got sick.

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

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

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

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

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

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

 

 

 

 

The Way It Works / The Circle

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Only a small piece of it all…

I understand now how people in my position are pushed to become thieves.
Believe me, I’ve considered it – but almost never seriously.
Almost.
But it comes down to this: Money is such a minuscule piece of the whole.
Yesterday I deposited my disability check of $434.70 – what I am supposed to somehow survive on for the entire month after rent is paid. (The service takes out rent & hands me a check for the balance.) The next few days are usually the best- the “adulting” I feel in being able to pay bills, get food & treats for Ruby, order herbs I’m almost out of, do laundry – and look at all the amazing events happening, fantasizing about actually going out and seeing people.
And sometimes, I get to go to a cafe. I stand in line, look up at the board for something that sounds good but isn’t stupid expensive ($4.50 is my limit – until now an unconscious one) – and as I wait for the coffee to be made look for a small table, just for me & my laptop. Preferably somewhere in a corner, where I can look at people, not be noticed, and in sacred anonymity, write. 

The money goes quickly. I’m always behind in my PG&E bill, always short on herbs. I do my best to make sure I have the most important ones. I know exactly what happens when I run out and have the blood stains on my sheets & clothes to remind me.

This is why I ask for help. How I am able to tear down all that I have believed myself to be, push the weight of pride and the determination to do it myself aside, and find a shaking voice that is able to speak up.
I can’t describe how amazed and grateful I am that you’ve stuck with me for this long. You have not only helped me stay healthy physically, but *mentally* as well.

But this is where I have no choice but to ask for help again. I’ve been doing well and getting noticeably BETTER over the months with your support, and I simply can *not* get well without it. After bills & a small order of dog food & herbs, I now have .59 cents to last me for the ENTIRE month. PLEASE, help if you can – in any way.
Paypal – ksea@culturefluxmagazine.com.
</short version>

<longer version>
We CAN win this. I can not do it without you.
Paypal addy is ksea@culturefluxmagazine.com
It’s a terrifying & sickening vulnerability, as every time I ask for you to help prevent me from going back into the hospital again, you always have the option to say “no” – or to rip my heart to pieces, ignoring these words completely.
Looking out through my eyes, it’s hard not to see the absence of financial support the same as taking away emotional support as well – as since I almost never see any of you, and the only times you say anything to me are in the messages in Paypal or GoFundMe. It usually is all I ever see that shows you still care.
I know how pitiful that sounds and I hate it.

Your support extends FAR beyond only financial gifts, and each time it lessens the weight of this daily struggle. It lightens *my* spirit.
Paypal addy – ksea@cultureflumagaxine.com
~ ~ ~ ~ ~

After picking up the check & depositing it in my bank, I took Rubes to Civic Center so she could run around & we could play in the *gorgeous* sunny day (as much as my bruised back let me), then we went to Walgreen’s so I could pick up Epsom salts for my back & more Band-Aid’s. When I don’t have the proper herbs, my legs itch like hell & I scratch the paper-thin flesh off in parts. The band-aid’s help prevent infection a little…

Then home to pay as many bills as possible, order a couple weeks of the most important herbs (as well as dog food) – and that left me with just a little under $100 for the month for nutritious food for me, herbs to help itching (less important but still needed) and the always essential coconut water. Normal water doesn’t hydrate or process, making legs & abdomen bloat & swell.

Today Chuck was kind enough to pick me up at the hospital & we made stops to pick up liver & fruit at the cheap Mission groceria – but at that stop I checked my account balance.
Expecting to have around $60-$70 still, my heart sank when I saw that my total balance was $5.70, and $6 cash in pocket.

I had no choice to put all the good fruit back & keep only the liver, so I would have enough to get wet food for Rubes & a few liters of coconut water at Trader Joe’s to last 4 days – if I don’t drink as much as I should.

Okay – Im fighting to keep my eyes open, and losing. I’m frustrated, & going to sleep. PLEASE help in any way you can. This isn’t a frivolous request, & what you do when you support this fight is nothing less than help keep me out of the hospitals – and quite simply, keep the spirit of this warrior fighting to stay alive.

You guys are incredible. Please keep believing in me.

Love love love,
~ Casey

PS – PLEASE don’t hesitate to share, like, and keep bumping this around so it can be seen.
Thank you!