nowhere but now

Outside with Ruby this morning in our “back yard”, the lot behind the apartment building I live in, I stood there in my pajamas, bathrobe & boots, enjoying the early morning quiet, grey skies & cool breeze.

As Rube did her usual sniffing around I lifted my head up & closed my eyes, taking that moment in as fully as possible, finding gratitude in just simply being able to be there. In the nearly 7 years I’ve lived in this one place, only recently have they opened it, unlocking the steel gate so that it could be used. For a couple months only myself and one other resident in this 48 apartment building had the key, but as soon as the security cameras went up they replaced the handle of the gate with one that doesn’t lock at all.

To have a small patch of solitude that I can pretend is my own, and just walk or stand on something other than concrete without having to get dressed and walk to a park, to simply be outside & alone with Ruby – in the middle of the city, it’s quite a blessing.

To be here. To be alive. There is so much to be happy for, so many small things that are so frequently are overlooked or taken for granted.
Fat too many people seem to look at happiness as a goal, something to be won if they work hard enough, make enough money, save enough… but happiness should never be a goal for another day.

When I was in hospice, there were many occasions, sometimes for weeks on end, when I wasn’t certain that I would be alive the next day, or even in a few hours. I didn’t have the luxury of looking to the future hoping to find happiness; and as hard as it sometimes was, I needed to find reasons to be grateful, to live moment by moment, and find happiness & grace inside myself. To force myself to smile at a nurse through the pain, to laugh at the absurdity of being able to smell the stench of my own body decomposing, to find the courage to simply accept whatever happened, knowing that it was a miracle that I had even lived this long – and man, what a life it had been…

I keep everything I learned in hospice inside of me, creating my own happiness & grace, and though I’m certainly not happy all the time – nor, I think, do I want to be – when I need to, I use what I learned as the means to a good life right here, right now – and not a goal to be achieved some other day.

My happiness depends on nothing but me.

But of course, a nice little patch of grass & dirt to pretend is my own helps.

Advertisements

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

 

 

 

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!

A strange separation


vlcsnap-2014-12-04-21h38m30s235I look at old videos that I took while in Maitri. Things I haven’t seen since recording them, “footage” that no one else has seen, nor likely ever will unless you ask – and I don’t think you want to.
Better to hide behind the hint of truth that you already know.

These are the things I need to remember when I see other friends going through the hells that they do – so few of us tell the whole story. We’re afraid to.
We aren’t looking for sympathy, not looking for “oh, you poor thing…” We know. We know how you feel because we feel it more. We feel it more because we have that badge sewn into our flesh. Trust me, this is nothing against you… in fact, I hope you never do understand. I hope that you never have the capacity to empathize on that level. Your well wishes *are appreciated…

But what we truly seek is understanding. A person to cry *with* – not someone who cries for us. Only in those (thankfully) few people can we find some sort of twisted kinship.

Please don’t get me wrong – I love you. GODS, how I love you, for your caring, for your support, for the way that you *don’t* understand…

But I watch the videos, and even I, who have lived through that time, am disgusted at what I see… the decomposing flesh, the blood, the “fluid” that stained everything I slept in or wore, frequently soaking through the three layers of gauze & bandages to the pants Nd dripping on the floor of the cafe… And for the greater part of five years (the decomposition began *long* before I went into the hospice) – that was just another part of daily life. Brush my hair & remaining teeth, splash water on my face, peel the dressing and flesh from my legs try not to scratch because GODS they itched from the poison seeping out… and what do I need to do with CultureFlux that day?

THis seems like an entirely different life, the one I am living now… an entirely different person – finding my Birth Mother, being solid and “stable” enough to at least let a dog “think” that everything is wonderful… – even to the point of daring to offer my heart to another…

And remembering how wonderful that feels, even in the pain that it has brought.

Recently a friend said to let go of the past and focus on the future. I understood what was meant, and in many situations the person woulld be right – *IF* my past – this *particular* past were holding me back from myself and who I continue to become – but as I said to the person after a bit of thought – “In order to see where I am going, I cannot be blind to where I’ve been.”

We all go through what we need to, so we can give the lessons we have learned…

and I think I pretty much lost my train of thought… if there was one to begin with.

Perhaps the most important thing however – as grim as it may look to others, keep fucking smiling – and to everyone who *can’t* understand… please keep it that way.

You’ll find out enough about it in my book. That’s as close as I *EVER* want you to get…

I love you.

 

MomMe3

loving someone to life

Glancing over the past few years on Facebook Not for anything specific that i can recall now, perhaps a photo, or just wandering down the long valleys where the memories are kept…I brush away the moss & dust that has settled on them as life goes on, the wonder and appreciation of new paths, changing lives casting shadows over the older moments we have learned from…

Is it only me that feels this nostalgic sorrow for not remembering every mention of love and caring that people have invoked my name in? For months on end I now read them, on after the other, wishing me well, calling to others for the sake of my support, reachingout to people I don’t even know because someone that they know needed help to stay alive.

The thoughts of what was call tears to my eyes, and as they roll down my face, no longer gaunt and skeletal but full, shining and healthy as if none of this ever happened…

I remember how very much I owe to them, to the people who gave so much love to keep me alive.

I come across one line, a line I have never forgotten that took all the strength I had to write.

***November 27, 2011 · San Francisco, CA · 
Drowning, please, need someone to take me to emergency room ASAP
If I remember correctly, Bob found me only semi’conscious in my motor-home… nothing but what I wrote is clear until I woke up somewhere around ten days later in the ICU having little idea what had happened, only that I didn’t have the strength to talk or even write.
I remember trying. I couldn’t form a single legible letter.

~ ~ ~ ~ ~

I owe so much, in such profound ways.
To all of them… for the chances they have given me, and all that I have been blessed with since…

and now, I need to give them the most honest and loving thing I can possibly create, as small as it actually sounds…

I need to give them all of me, all that they don’t know, all that I could never say then, never disclose.

I need to give them a book; my book…

and inside of it, the closest thing to my soul that I can offer.

in the direction of my dreams…

On Thursday, late afternoon, my cell phone rang. As I didn’t recognize the phone number, I did what I almost always do with blocked or unknown numbers – just let it go to voice mail.
“Hi Casey, this is, um, Don Mathern, just, uh, trying to touch base with you…”

It was a message from my Father.
Strange, the thought that this is the first time in my life that I’ve heard is voice. A very concise message, business-like – but I think I can understand. When confronted with having to leave a message for a 47 year old son that you never knew you had… I don’t think there’s a script outline for that anywhere.
Not even on Google.

He wants to talk. Get to know me. Get “together”, but I don’t see a trip to Boise anytime soon in my future, and I’m fine with that…

But – holy crap.

He said that he will be out of town until Sunday, which is good – it gives me a little time to process.

It’s been exactly four years and one day since I walked into the hospice. Thinking back, it’s been quite an eventful time.

Literally dancing out the door after over 18 months in a hospice then hospital, nearly dying twice & astounding the doctors & nurses when I found the strength & fight inside of me to live…
Finding & meeting my Birth Mother…
Blessed in finding the most incredible girlfriend & partner I could even hope to imagine.( Simultaneously amazed and terrified…)
Spending the first birthday of my 47 years in the company of the amazing woman who *gave* me this blessed life…
Finally wrote to the guy who was the other part of creating me, and didn’t have the slightest notion I existed…
and… he’s willing to get to know me?

Yeah, the past few years wouldn’t exactly be what you would call “boring”.

It certainly makes me wonder what is next.

I need to get my business going – create the means to help others. Write a book. Speak. Let people know that regardless of how bad things get, tomorrow will be better. Always. If you’re alive, you have the natural ability to create your future life – and it’s worth fighting for.
I promise you.
As I am the author of this particular story, I can do much more than only talk of what has already happened. I have the power to decide how the rest of the story reads as well – how the chapters are written, constructed, created – and lived.

We all do.

So… what happens next in your story? Don’t just write what has already happened – write what happens next.