the gift

Every year, on my birthday, I check to make sure it’s still there.

Every year, it is, and my heart is both torn and comforted.
It was the first thing I ever knew, and over the years has become a part of me. I think that without it, I would be lost.

Every year, for my birthday, I take it, wrap it up in pretty paper, and give it back to her, but I could do that a thousand times and it would still be here inside of me. It makes me who I am… but I do wonder what it would be like if it were gone.

Inside is the very first thing I was ever given, and something I carry with me even today. Even more today.

I didn’t have any words to voice what I felt, couldn’t make sense of it as the heartbeat and smell and warmth that let me feel that I would be safe was ripped away and I was torn out of the arms that for fifteen minutes kept the cold of the world away forever.

I would take it out, put it in a small box, wrap it up in pretty paper and hand it to her. Inside is something bigger than she is or can ever be, but something that over years and years made me stronger than I ever could have otherwise been. It takes a lot to hold the pieces together for so long.

She would open it up every year on my birthday.
Inside would be the baby’s pain.

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Weaving the Warrior

I’ve been away from the words for a while, but my mind has been far from idle. Now, it’s time again to start writing. It’s the only place I find solace, comfort, answers, as if I was sitting outside on an old wooden porch talking with an old man or woman who offered their wisdom, who made me think. It’s the old black man sitting in his rocking chair that I created as a child – someone to go to in my mind all the times I had no one else…

I’ve been thinking about what I want, what I have *always* wanted, and realizing now that, for the first time in a life that has been spent looking for something secure and solid yet at the same time being afraid of anything that was – I now have that. At least, I have the possibility and option to make what I want in this life finally happen – a creative business that knows no end to growth, that can make people feel better about themselves and empowers them, and through my past experiences, I have something unique to offer that no one else can – the strength I found inside of me from fighting for my dreams to fighting for my life – and that strength goes into every piece of jewelry I design. Through my business and the direction I see it going, I want to empower women. I’ve seen far too often women trying to make themselves as small and unnoticeable as possible, walking as quickly as they can with their arms wrapped around their chest and head hanging down, doing as much as they can to get into a fetal position while still moving forward.

I want them to remember the strength they have inside of them, to understand how powerful they truly are. I want them to celebrate their beauty, and hold their heads high.
I want people to be afraid of the women I dress.

I’ve taken a long look at my life, what it has been and what it could be, and a decision has been made.

I know where I’m going, and I’m going to call upon the same will, determination, and courage that I found when I was fighting like hell for my life in the hospice to make this into what I know it could be. What it WILL be.

It’s time to make my dreams into reality again.

 

wings

Lifetimes ago, I called to you, called, and finally

you looked, noticed how my wings glistened with light

and reached to take hold of my hand.

You were blind to how these wings were scarred, wounded, broken,

or you just didn’t care. You saw something that you thought you could fix.

You reached down, down far – and almost fell

almost fell – for me. Some things I just won’t let happen. See where the scars come from, see why I use what I do for paste now, and don’t judge.

Out of bourbon and fire, fire and ashes, ashes and dust, dust like thousands of words and the tears of joy and sorrow that created them, out of these things I make my paste. I make my paste out of the same wind that carries them away. I make my paste out of the strength of the blood of my heart, of mine, not yours. You want me to be my best, my best for you. I want to be my best for me and only that because that is what stays. I know me better, I know what I want I know who I am and who I will be and that is not your creation. Even in your love, it can only be made by mine of myself. Only I can make me, again, and again, and again – and I do. You haven’t known me long enough to realize this. Let me be and love me and let me always become. Try to mold me and I crumble in your hands. Love me and let me be if you’re strong enough.

If you’re strong enough, I will be stronger for both of us.

The Fun Begins…soon (Kicking, day 0)

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

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

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

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

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

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

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

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

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

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

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.

Through the Fear

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

Sometimes I find it. Sometimes not.

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

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

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

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

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

Fuck that.

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

and I’m not going to start now.

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

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

It’s time to trust the Universe again.

We MUST keep moving forward.

Too Far to Fail Now

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

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

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

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

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

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

I just need to get it out to the world.

I’ve come too far to fail.

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

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

LET’S CHANGE THE WORLD!

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

www.kseaflux.com

LOVE YOU.

back in.

 

It’s hard for me to accept. Impossible to foresee what the outcome will be.

Either all I have worked for comes to fruition and my life changes entirely, or… it doesn’t.

Like the 1st letter I sent to the person who, after searching for 25 years, I knew was my birth mother, and the wait after that. Like fighting so hard and so long to make a dream come true that the final act of jumping into the unknown is the only direction to go anymore, I need to take a deep breath, and believe.

It’s time to let go.

Let go of nearly all of the control I had, and just do my best to aim away from the rocks and trees as I soar past them, faster than I’ve become familiar with over the years of lying immobile in a hospital bed and then my own, planning for this time as life passed me by.

It’s time to join life again. To jump back in the game.

It’s getting closer. It’s what I have worked so hard for. It’s what I have studied far too much for – and I’m terrified. I need to remember how to love being afraid, because I *sure* as hell have forgotten – and I recall not that long ago when being afraid, when doing something I had NO idea how to do was like a drug for me – a euphoria. Where the hell did that person go?
I need to do some digging around inside of me & find him again. Maybe he’s just sleeping – feeling unloved and under used.

This will light a fire under his ass.

Very soon, it comes to the point where I have to release this to the world, and see if they approve. See if they are interested enough in me enough to support my project, and hope that they are.

Will they see me? Do they want to know me?

Will they love me?

Sure, I’m frightened – but I also believe that it’s time to light a fire under MY ass, and which-ever way this goes – in some way, it will be successful.

out of my head

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

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

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

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

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

I need to remember that lesson.

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

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

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

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

 

…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.

unconscious for nearly two weeks. Hooked up to All of the fancy machines, and the one that goes “BEEP!”

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.

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.}

 

 

 

 

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!

Far more than one life…

They didn’t think it could be done. That I could live.

They tried, though. Gods, how they tried – but after the drugs that didn’t help, all the lotions & prescriptions & visits from some of the Nations best specialists, all there was left was changing the dressings, tons of morphine, and the sadness & frustration & saw behind their smiles.

Sept. 13, 2010

unconscious for nearly two weeks. Hooked up to All of the fancy machines, and the one that goes “BEEP!”

– Then, we took over. Me – and all of you. Not willing to die, having so much more I dreamed of doing, I decided to fight – but knew there was no way I could do it alone. I found friends who believed in me, who kept me fighting even during the numerous times I wanted to give up.
When I was up to my nostrils sinking in the thickness of the swamp, you threw me a rope – and we all pulled as hard as we could.

The financial support you sent so I could afford the herbs & nutritious foods I needed was always SO much more than that to me – far more than just money. It was a gift of love, of belief that I *could* win, and every single contribution I have received from that time has never failed to fill my heart & renew my spirit. Every single gift was another strong pull on the rope to help release me from the pit that, without you, I would have died in by now.

One of the beautiful beings that kept me alive, The photo was sent all the way from New Zealand (!!!) by Meredith Yayanos.

I can never thank you enough for what you have done, and gods, we have come SO incredibly close to pulling me free! The fight now isn’t to pull me through the molasses-thick sludge of the swamp, but with a few more pulls finally lift me on to solid land – finally *curing* the cirrhosis – and with it, all of the symptoms I’ve been fighting from pulling me back down…

But the fight has been going on a long time. I’ve been pulling like hell, as you have – and we’re both tired, I know… but it seems as if nearly everyone who was helping to pull decided that it wasn’t worth the effort, dropped the rope, and walked away – except for a couple people, and of course, myself.

I’ve fought like fucking hell, every single day for six years & one month to get this far – and as exhausted as I am, solid land and *health* – and finally after all this time being able to live a nearly normal (for me) life again is within reach, and closer than it has EVER been – but the fight is still as hard as it was in the beginning, and I still need your support – otherwise all the effort we have put in will have been for nothing.
WE CAN STILL WIN, and it’s SO incredibly close – but I still need you.
So again, I plead with you: pick up the rope, and pull for me.

I won’t let go. I can’t. It’s my health and my LIFE that I am fighting for

Thank you so VERY much for all you have done so far – we’ve done what the Doctors didn’t believe was possible already by cheating death – so let’s show them how strong we REALLY are, and reverse my cirrhosis. When we do – then I can show others how to do the same, and save their lives.

Paypal: ksea@culturefluxmagazine.com
PLEASE.
Love,
~ Casey

A decision that could either kill or heal…

(Five minute read.)

Something needs to change.
There are many nights, laying in the same room, same bed for the past four years… many nights, after I close my book & turn off the light, before I shut my eyes and I give myself over to randomness of thought, it’s at these times when it all seems so unreal and it feels as if I’m only a rough sketch, indiscernible, an extra in the life I once starred in.
I seem to have forgotten who I am again. Who I was. Who I want to be.
The fight drains out of me, the passion for life I once had has been lost along the way, replaced by the fight not to die. They’re not the same in any way, I’ve found.

One keeps the mind engaged, excited, learning how to get past the challenges and constantly growing, becoming more, creating anything out of nothing.

The other is just fighting to stay well – being reminded that I’m sick every single time I need to ask for help, seldom being able to escape that as the focus of my primary existence.

Each morning and night I do a meditation, one that focuses on repairing my liver & giving thanks for another day. This meditation helps – I am certain beyond doubt that is what played a large role in surviving when I was in the hospice…
Yet each time I have to ask for financial help to get herbs, it rips that apart and I need to spend days building up the nerve to ask again, all the while thinking of what will happen if I don’t ask.

But having to ask, having to focus all my thoughts on what is killing me, is perhaps the main reason that it’s taking so long to get better, to get *well* – so after this, I won’t be asking anymore.

There’s a vicious battle inside of me each time the herbs begin to run out and I want more than anything to simply be able to throw them all away or give them to someone else, and as I begin to die again I have this vision, this dream of finally being able to live life, even if only for a short time. No research on what would keep me healthy because it wouldn’t matter anymore, finding the passion I once had to LIVE and make every minute count, knowing that they were quickly ticking off…

But I can’t do that. I made commitments – to myself, and a very few of my older friends – the people that shared parts of my life besides just occasionally, accidentally seeing me “out”…
Now, the battle is with myself. I need to figure out how to make life feel real again – and I know exactly where to start.

The cirrhosis is what is killing me – the cause of every symptom, from the swelling to the anemia to the severe lack of energy, and all the pain & discomfort those bring. There are herbs that, if taken regularly, will be able to reduce the cirrhosis to the point where my liver does what naturally comes to it & rebuild itself, repair itself – but those are the herbs I can’t regularly afford.
I’m slowly dying for one reason and one reason alone – I can’t afford to live.

But – I can’t ask for your help anymore either.

In no way does this mean I won’t continue to need the herbs and your help just as much – but I also know the power the mind has over the body, and my mind has to think thoughts of getting well again instead of describing over & over to you what will happen without the herbs I need in hopes to inspire you to help me.

To put it simply, one last time – without the herbs to keep the cirrhosis from getting worse, without the herbs taken on a strict, regular basis to help heal it – I will die.

unconscious for nearly two weeks. Hooked up to All of the fancy machines, and the one that goes “BEEP!”

I will still desperately need your help – it’s what HAS kept me alive this entire time – well, that and the shitload of will I have inside of me *not* to die – you just aren’t going to hear about it anymore.
I can’t expect to get better when all I do is whine about being sick, in pain, and terrified… so I leave it up to you now. You won’t hear anymore from me regarding being sick after this. I’m putting myself in a fragile position, but I can’t help but think it is for the best. For all of us.

One more time, My Paypal address: kSea@CultureFluxMagazine.com

The GoFundMe page a friend set up is at: https://www.gofundme.com/fightingkflux 

So finally, I will be writing about other things again. The things I used to write about. The beauty I see, the magick all around us, and yes, silly observations about daily life in general.
I’m looking forward to that.

I love you – be well…
And PLEASE, Share this – and if you can, support this goal I have of getting well, not just… not just not dying.

Until again,
~ Casey

P.S. – To those who have written me privately or commented on posts saying that I inspire them to fight through their illness, please keep doing so. Continue to ask me questions, continue to stay in contact, and above all, continue to fight – but the above is the best advice I think I can give to anyone; focus on your LIFE, not what is preventing you from living it in the fullest way you can.