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

 

 

 

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.

The good with The bad

So, do you want the good news or bad news first?

Oh man – I was hoping you would say that. Okay! Good news it is. Here we go.

Remember that book I was telling you about, the one that I was planning to write? Well – I finally started it! It took some cunning, telling myself I was going to sit down & write something else, but at the last second I told myself I was going to at least start the book – and that’s what happened.

It won’t be like anything you’ve read before. Unapologetic, authentic, moving & inspiring, it’s going to finally put into words the wild & often hilarious adventures I’ve had over the past ten years, from when I decided to give up everything & chase down my dreams… and it’s going to be entirely true. Wish me luck.
Now, the crappy news I just received this past Friday from my doctor.
It’s likely I’ll get denied the surgery I’ve needed & been hoping for for over five years.
Quick back-story: When my ascites (the abdominal swelling) was at its worst, the pressure was so severe that it actually pushed my insides outside. Squeezed a part of my small intestine out of my navel.
Over time, it’s grown. The skin has stretched, and even more of my intestine is on the wrong side of me. As a result I need to wear a hernia truss every single day, from the moment I wake up until I go to bed. If I don’t, the intestine stays out and even after putting the truss on, the pain lasts the rest of the day.
Now that I’ve fought so hard, and, with your help, been able to bring the swelling back down – my doctor told me on Friday that my platelets were so dangerously low that the surgeons told him they would likely deny me the surgery I need to fix it.
Thismeans never going anywhere, ever, without having to wear the truss. Beach, sunny park, anywhere I want to soak in the sun or just fucking be comfortable again.

zbelly1

These pictures disgust me. As superficial as it is, I’m insanely (irrationally?) self-conscious about the way my hernia looks.
To think that I may have to live even longer with it is unbearable.

zbelly2zbelly3

Even a simple small cough causes pain – with or without the truss. It feels like my guts are going to rip through the thin skin & go shooting across the room like one of those trick peanut jars… so I need to raise my platelets, or this is going to be my life. There are a few things that help, the best being papaya juice and wheatgrass/chlorella – but as usual, I don’t even have money for healthy friggin’ food, much less indulging in things like taking my health back & being able to live a life that I used to take for granted – and so many still do.
So again, as degrading as it is, I have to ask for help. Right now I can’t even get to the pharmacy to pick up a needed prescription, because I don’t have the $2.25 for the damn bus. I don’t have money for food, for the coconut water that keeps away the bone-crushing cramps and keeps me hydrated as the other fluid is flushed out…

***So please – share this & give whatever you can. I’ll admit – though I’m grateful for anything, it’s horribly disheartening when I lay it all out there, force myself to ask again, and help just barely trickles in – like it has the past couple of times I’ve had to ask. Please. Help me get what I need so I can not only get healthier, but get the surgery I need for my hernia while I can. I have an appointment with the surgeons on January 14th. There is no time to waste.

My PayPal address is ksea@culturefluxmagazine.com, which is much preferred to the GoFundMe page – but if you wish to give there, the link is www.gofundme.com/fightingkflux .
Thank you.

Ah, but that’s right – I promised you some more good news.
The herbs are WORKING, and the swelling in my legs & abdomen is going down, much to my delight – and thanks to you. I’m finally able to consistently make it not only up the stairs without getting winded, but to the BIG dog park at the top of the hill, which for a while I could only get within two very steep blocks of. This, of course, is much to Ruby’s delight – but we’ve been hit with some pretty steady and much needed rain for a number of days now, and she isn’t to thrilled with that wet stuff from the sky. Still, I try to get my exercise in where I can – not only to build my strength back up after my muscles atrophied in the hospital, but it helps with the edema (legs) and ascites (abdomen). In the past 21 days, I’ve gone from 191.6 lbs. To 168.2 – with maybe 10 more to go. It’s slower, but much healthier than the prescription drugs, and well worth it.

We’ve accomplished some incredible things together. Without you there would never have been any possibility of getting better – no reason to fight, because I would have had nothing to fight with… but damn, look how far we’ve COME!
We’ve gotten this far. I promise that if you don’t give up on me, just hang in there for a short while longer – I won’t give up either.

I love you.

~ Casey

consequences

In the past week alone, I’ve heard of three separate people who have recently passed from Hep-C complications. Without you, I would have been one of them four years ago. That doesn’t mean, however, that I’m in the clear. It’s still a daily battle, closely monitoring everything about my body, doing special exercises, tending to wounds and doing what I need to to keep from getting sick again.

I don’t just “get sick”. If I neglect to do anything & my health goes south, I end up in the hospital, to face an even harder fight if I get out.

But I also need to think of the consequences. The swollen legs & splitting skin, the distended abdomen, the crippling pain – you think just the thought of that would be enough for me to push aside my fear that you’ll end up despising me, or at the very worst, ignoring me. Scorning me, my words…

 

IMG_0533 SnapShot(3)

Every single day I fight like hell to never go back to this...

Every single day I fight like hell to never go back to this…

But your financial help is the ONLY way that I can get the various herbs, foods, and other things I need to avoid being hospitalized and fighting to stay alive. Especially because right now, thanks to you, I AM getting better, and feeling more of the person I was before all of this… but I’m out of money, and a few days away from being out of some of the herbs I need.

Because I was afraid of what you might think of me, I got myself into a somewhat terrifying bind.

There is no other option I have, and as much as I loathe having to keep doing it – I’m the guy who goes through complete hell if, like last time, I don’t try every option I can think of, and there aren’t too many.

Therefore I ask again, and will until we either have won the fight, or I end up in the hospital again, wondering if just returning to the same fight is worth it.

And thank you, for everything. With all of my heart, with all of my hope & spirit, thank you. 

I love you.

~ Casey


the fight inside

It’s been quite a while.
Many things have happened, and are happening.
The book – MY book, is still in the forefront on the priority list – and it’s right up there with staying alive.

I have no desire to literally  be a ghost writer… let me get known just for writing while alive, first. Then, we’ll see what I can pull off when the time comes.

This is my latest update on the page that is helping to save my  life in this battle – please share it, spread it around, let people know that they can REALLY rock my world. It’s at a critical point right now, and I need people joining me in my fight to stay alive.

Thank you.

~ Casey


There are bad days, & still worse nights – but generally my health & the way I feel are improving, getting close to what I was before I ran out of scratch & herbs the last time & ended up in the hospital.

This is when the fear creeps in; when I begin to feel the stress I know that trying to cheer myself up and hope that it may not happen this time is futile. I’ve been there. I know this place.
The money runs out, then the herbs, and my body begins to fall apart… again. Again, and each time it is more difficult, takes longer & a much harder fight to come back – and I don’t know if I have the strength to anymore. I don’t know if I want to.
I don’t want to have to wait until I end up in the hospital for the help to come, but when there isn’t an emergency, when it just seems to be daily maintenance, maybe you believe that your help in this fight is less appreciated, less needed – when in fact, it’s the exact opposite.

I need you the most when I am getting better. When things are less dramatic, when it doesn’t “appear” that I’m fighting for my life – just taking my herbs like someone else a bit more fortunate takes their 1-A-Day vitamin…

But EVERY day is a fight. I take 15 different herbs, document how much of each & play with the quantities. I write how I’m feeling each day, if there is a noticeable change, try to determine if it’s because of the herbs or just the day. Meditation, physical exercise, focusing & visualization, breathing exercises, wound cleaning & dressing from where I gouged myself due to the insane subcataneous itching (which drinking Aloe I just discovered helps a LOT) – but by far, the herbs are the most important.

That’s why the terror sets in when I’m broke & running low. I still need to eat as well.

Right now all I feel is dread. I’ve ended up in the hospital too many times, have fought far too long & hard, have endured more than enough pain – and I don’t want to have to go through this fight again for such a stupid reason as not having the funds to purchase what I need.

Though I am getting better, I still desperately need the herbs & teas & everything else that I take everyday to win this fight – as without them, it all goes to hell – and I’m so dreadfully weary of going there.
I just want to write my book, and not fight back the tears that come as they try to right now, when I don’t have enough money for the herbs I need because I need to purchase coconut water to fight the cramps.

I’m getting weary of asking, but right now, YOU are all that I have to keep me out of the hospitals, and I need you in this fight. NOW is the most important time – not after I’ve ended up in the hospital… as by then, it just may be too late. Too much work to come back, just because I ran out of what I need now.

Please. I need you in this fight, I need you in this battle for a life that I DON’T have to fight for every single day, and I need your support now. Now.
Please give, PLEASE share this *everywhere* and continue to share it, because apparently there are a lot of people who aren’t online 24/7.
***Another way to support the fight besides the campaign is my Paypal Account – ksea@CultureFluxMagazine.com – they don’t take the 9% of everything that GoFundMe does, so that’s really nice.***


It rips me apart to say this, to admit it, to ask over & over – but I really, really need all the help you can offer.

I mean hell – we’ve come this far, and I’ve been busting my ass – (the herbs are only a *small* part of the daily regimen) – so lets keep going, please?
I’ve decided that I really don’t like hospitals – at least not spending months in them.

FIGHT with me, SHARE this campaign – and from the bottom of my heart – THANK YOU!

Another Great Step Forward for #MyBook!

HELLS YES!

I just secured the amazing Chuck Revell’s photography as some of the awesome multi-tier rewards for the Early-Bird & official Kickstarter campaigns for #MyBook!
Out of the kindness of his heart & to support this project, he will be donating some beautiful fine-art images, and *EVEN* for a few *very* fortunate contributors, a personal photo-shoot!

Check out what his extraordinary eye catches through the lens at RevellRay Photography:

Of course there will be many more fantastic rewards for those who support the creation and publishing of my book, but I really wanted to be able to offer some extra rewards that are less common in a publishing campaign, and supporters should have as much beauty to choose from as they deserve.

The “official” Kickstarter campaign is involving tons of work and lots of waiting for others (mostly for the video).
Needless to say, I (and others who have been on my ass to write the book since I first spoke of it) am far too excited about getting the thrilling but arduous process of #MyStory in gear to wait for everyone else,  so I’m creating something very special.

In order to get this book rolling ASAP, there will be an Early Bird Campaign launched very soon (this Mon. or Tues.)
It will be independent of the Kickstarter, but hold true to and even above the same promise and pledge to its supporters.

The really cool thing about it is that it will offer *very* special, limited edition, and one-of-a-kind rewards that will NOT be available on the official Kickstarter campaign, as a special show of appreciation from me to you! One they’re gone however – they’re gone, never to be seen or offered again.

If you don’t want to miss the opportunity to find out what *those* kick-ass rewards will be, then follow me here, On Facebook  or on Twitter at @kSea_flux –

And please – feel free to share this *everywhere*. I’ve got a HUGE & beautiful project in front of me, and it will need as much support as possible.

THANK YOU!

Love love love,
~ kSea