Into the Storm

Sitting in my bed, comforter pulled up to my waist, warm and… not happy, not blue, but if I had to think about it (and it seems I need to now that I wrote that) – feeling… what? Perhaps something of a positive indifference, if that makes any sense.

Grey skies, scattered rain & the wind howling through my windows which I intentionally leave just a crack open for exactly that reason. I like the feeling of safety & warmth inside, the storm not able to affect my life, as much as it beats against the barriers that surround me.

But I also miss the exquisite storm, the way my blood pulsed feverishly, passionately through my veins feeding off of the uncertainty of every day. I miss the directionless path, trusting that it would take me where I needed to be and it always did. I miss the way the words would rip themselves out of me, tearing me apart & puttin me back together like a puzzle that always found a place for the extra pieces.

I miss the feeling of the feeling of the road under my wheels.
I miss the fever.
I miss the storm I once was.

The wind screams & moans through my windows, calling me, summoning me.

It’s time to join it.

The Treasures Within

It’s the mornings that I like the most these days, at least when I have the energy to find them, to keep my eyes open regardless of how little I’ve slept & live in them. The dim grey light from my bedside windows, the yellow light of my table lamp, the sublime quiet in a world that is so otherwise noisy & obtrusive.
I feel the cold of the air on my chest and arms, the rest of my body tucked tightly & warmly beneath my comforter, the weight of Ruby snuggling up to me for warmth.

rubysnugle

Coffee heated up from the day before, I take a few moments to read or think and let my mind wake up just enough. It’s these times where I feel the most grateful for this life, even as odd as it is these days.

I find that in many ways writing this book, my memoir, is toxic to my current happiness if I let it be – I read and remember and write the adventures of a vagabond, a traveller with a heart so light I could feel it glowing inside of my chest, a heart so light it flew. I read and remember and write of love, of pain, of the joy of being untethered, free.
I wonder how a person avoids comparing their life to a more glorious one they themselves have lived, and find no answer to placate me – but we must keep on going, moving forward. That is the only way – but moving forward by writing of my past puts a different twist on it, makes it ever so much more difficult, and it comes down to forcing myself to get through every single word, every sentence, every remembered feeling.
Then there are the times where I simply need to stop. I don’t know what bothers me more – writing my past, or not being able to.

But we must go on, move forward – even as much as it sometimes hurts, even as confusing and frustrating as it sometimes can be…

And godsdamn it, I need to take Ruby out. Back in a few minutes…

* * *

I feel at times – frequently – that I’m not as creative as I once was. That I don’t have the spark in my soul that I had, that the passion that burned in my heart for life and living and creating and loving every single little fucking thing about this extraordinary existence has fallen away over the years, and now the fire has become only glowing embers and the ghostly smoke of yesterdays.
And the more I think about this – or better said, the more I write about this, the more I step away from the excuses. I begin to realize the level of bullshit I’ve had to tell myself, convince myself of, simply to hide one simple & obvious thing: I’m afraid.
I’m afraid that I don’t have anything to give anymore, I’m afraid that no one will hear me or care. Worst of all, I’m afraid that I’ve forgotten the words to sing this life, the steps to dance with it.
In this understanding I have a place to start, a new strength to use against it. Of course we will be afraid – it’s a part of life, a healthy one – but that doesn’t mean we need to let our fear control us.
We just need to make room for it, to invite it along for the ride but refuse to give it the wheel because godsdamn it, this is OUR trip, our life, our love and passion and need, the fire that does not go out – we just need to remember to breathe on it once in a while. We need to remember to breathe.

Years ago, perhaps when I was 16, I found a small book in a stationery shop that caught my eye – “Inevitable Papers”, by Cooper Edens. I bought it with the last of my money and carried it around for years, and though the entire book is wonderful, it was the last line that was burned into my heart. It was the last line that, quite likely, made me into who I am today: “And how long have you been the language of a story that could be true?”

This is my story. Our stories, and each moment is an opportunity to make them into what we want them to be. We can be afraid, but our courage needs to be stronger, bigger, more needy and persistent so that we don’t have the time to allow or fears to take over and stop us from being who we are.

We need to have the courage to bring forth into this world all the hidden treasures within us. They are there. They are waiting.
We just need the courage to let them sing.

Now on my second cup of coffee, the sun melts away the grey morning light – and until it becomes habit again, I make a conscious and effective effort to let my courage shine through the fear.

It’s a good morning.

to deny my mind for its own good

I didn’t want to go out tonight. More because of habit than anything else I can see, where if I’m feeling a bit tired I knew it would get worse, to the point of dragging my weary body like a sack of dead meat, saying no farewells or ‘see you later’s. That’s easy when it’s a party or the occasional free show, but this was different. I bought the ticket with birthday money from a very old friend. She knows me and my situation well enough to insist that I spent it on living instead of survival.

So I bout this ticket, entrance paid to Odd Salon, a storytelling event. As reluctant as I was (yet try not to be), I had to go. Hells – I wasn’t feeling that horrible.
I was running late though, so after a quick walk with RuBeast and the quick decision on which hat I would wear, I was out the door, walking to the DNA Club.

The fresh air, the walking energized me. I took a different route – one I have walked many times but less frequently, enjoying the very small pieces of things I hadn’t seen before.

And then I was there.

I had no idea what to expect, this being my first time at this event, but I like it like that. I love going anywhere that surprises me in any way. It never has been bad – I can adjust to anything. Perhaps that is something I carry from my past – never knowing who i was, so I am able to become anyone. Is it a blessing?

It can be.

The stories were wonderful though much less personal for the speaker than I had thought they would be. I learned a lot. I have decided that Josephine Baker is my new hero. I don’t think I’ve ever had one before, but ultimately I knew I wasn’t there solely for the stories.

Raven, Joy, Bronica – people I see so seldom but still remain dear were there, and seeing them, talking with them was wonderful – especially the brief chat I had with Raven on dreams & art – and some big words that I can’t remember. She’s sending me the full notes from when she did her talk though, and I’m excited to read them…

I’m getting tired.

After the show, a good ‘how do ya do’ with Aaron (#SFSlim), and plans to meet up with Raven and he sometime soon.

The ending of this sucks. Sorry about that, but fuck it – I’m beat. I was before I began… but I needed to begin, and more importantly, finish.

Now, as I begin to fall asleep at my laptop, I give thanks to all the wonderful old friends I saw to night for making the night shine brighter.

And I give thanks to sleep, for it has eluded and tormented me for days. I only hope that this time it is serious, and means to let me find solace in the dreams I dream at night.

I’m having many more of them now that the false dream of morphine is gone. There’s some beautifully insane subconscious being awakened again…

but how insane is it really?

Good night. Make good dreams.

Ch-ch-ch-ch-ch-Changes

 

It’s time.

I drifted off to sleep last night with a hundred (or maybe 10) thoughts in my head of how weary of this life of thesamegoddamnedthing day after day, pretending to exist in the world around me with a head full of morphine, digging as deep as I can, past the haze & the hollowness just to feel all the things that nine years ago flowed with such purpose, vim, vigor and passion to the tips of my fingers, and from there it was a direct channel to my heart and all of the things that boiled inside.

I drifted off to sleep last night with ten (or maybe 5) thoughts rolling around in my head of how I had come to loathe this incessant fight for health, battling the swelling in my abdomen & legs every single day, the membrane-thin skin that tears like paper from the open sores caused by nothing more than scrubbing a bit too hard in the shower, the Fatigue, the Fatigue, the Fatigue.

And I woke up with the same conviction to change these things. Life has become nauseatingly uneventful, every day trying to battle the fatigue to conjure up the energy to create something new and, not being able to, feeling as if I’ve failed the day. That I’m not appreciating this life as I should, that I’m not fucking LIVING – and this needs to change.

By the end of the month I will have gone through the pure fucking hell of kicking Morphine. I need a little excitement in my life, and hoping I can race fast enough to the bathroom on legs that want to detach themselves from me & go other directions should be enough – at least for the time.

Then, more fun. Because I deserve it – and hell, this will be something *new*! I like new things, even if they’re used. Frequently especially if they’re used.

Sooooooo…

At my appointment with my Doctor on the 12th of this month, I’m going to open up talks – this time, for the *first* time, instigated by me instead of him, & more positive this time – of a liver transplant. He’s going to shit fucking rainbows. He’s been gently pressing me to get on the list for a transplant for years.

I have mixed feeling about the liver transplant. It seems like the easy way out, in a sense. Just take out the old one that’s killing me and put in a brand new shiny one… one that could easily go to someone else who needs it more. And I still believe that I can reverse my cirrhosis, do it myself… but there is also no way to determine if the herbs I’m taking are helping, as the test that would show that wouldn’t be covered by insurance unless there’s a good reason, and my guess is using herbs to fix what Western Medicine says can NOT be fixed wouldn’t be considered a good reason.

But it’s time. Time to change things, time to rip myself apart & put me together again – this time whole, with the pieces that have been left behind over the years found & fit & made to work again.
And I’m willing to take the easy way out – as long as it isn’t *too* easy.

It’s time.

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

 

 

 

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!

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!"

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

SnapShot(3)

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.