Life, Death, Dogs. A Rooftop Contemplation

The occasional whisper of tires as a car drives by below, an unintelligible shout, the scattered songs of birds. The only sounds at this hour. Only the crackheads & I seem to be awake. Even the sirens are quiet, sleeping.

It’s 4am & I’m up on the roof of my apartment building with a fresh cup of coffee, a cigarette, & Ruby. The clouds above reflect the city lights giving a faint glow, just enough to see by. A cool breeze plays with my hair, blowing it in my face then away. I wrap my robe a little tighter around me.

I sit on the short wall of my building, look down at the weeds growing in our forbidden & neglected back yard. Near the far right corner calla lily’s bloom, defying the otherwise abandoned and unloved desolation. With their beauty inevitably comes a warm sorrow as I’m reminded of when Striggy brought a gift of bone-white lily’s to my tent in Austin. With love & reverence I placed them on top of the pale blonde box I had picked up earlier that day, already made into an altar surrounded with candles, a picture of Bean propped up against the box that now held the ashes of the most amazing dog & companion I’ve ever known. She was killed by a freight train a few days before, found by friends lying between the tracks, her favorite stuffed toy a few inches from her head. Nearly 13 years later & the tears still fall for her.

I turn back facing the roof top, close my eyes, take in a few deep breaths as I find a strange comfort in this sadness. Now, it’s filled with love and warm memories instead of the anguish I carried inside for years, holding it tight, afraid that if the pain wasn’t there I would somehow be betraying her memory.

I know better now. I understand death better now.

I think of how exquisite this life is, how fortunate I am. Occasionally I still let the weight of it all get to me and forget these things, but not now. Not today.

I open my eyes and catch Ruby briefly chasing her tail. I chuckle silently to myself and somehow love her even more.

I think of the time I spent in Hospice. Months on end so close to giving up, so desperately wanting to stop being strong, and each morning having to somehow find just one reason to keep fighting. One reason to stay alive.

As impossible it seemed to be able to imagine at times, I needed to believe that I would somehow get better.

I had to know, with as little doubt as possible, that there would be mornings like this one to look forward to.

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

 

 

 

More To Do

(I know – this is a bit long for the anti-attention society these days – but I would appreciate if you read it & got the *whole* story. Far too often I talk with people who only know a little – because they only read a little, yet think they know all that’s happening. Nearly the whole story *is* in these pages, but you only get it if you take a couple extra minutes to read the posts in their entirety.)

I first heard of it 15 months ago. Some amazing new drug, with almost no side effects and a 95% success rate of curing Hepatitis-C.

This was a far cry from the Interferon therapy that we – John (my doctor) Val, my Hep-C advocate & I – tried a few years ago, long before the 18 months I spent in the hospice. That was one of the worst nightmares I have gone through with any drug – not only effecting me physically, but as an added bonus some very serious thoughts of cracking the head open of anyone walking too slow in front of me… and frequently of suicide.
I had given up on you. All of you.

I used to wonder how long it would take someone to find me in my motorhome, if anyone would even notice I was dead. None of my “friends” ever called or checked in just to say hello, and my thinking was twisted to feeling as if I already was dead – it was difficult to find any reason not to make it just a little more real. At least the pain in my heart would likely be gone…
Thankfully, after three straight months of this they weren’t getting the results the wanted, and I was taken off the Interferon – otherwise it would have been another year & three months, and deep inside, I knew that I wasn’t strong enough to make it through. Every time it entered my mind, ending everything made so much more sense. If they were too busy to call, they didn’t have the right to miss me… but I couldn’t let John & Val down. They had cared so much over the years, tried so hard – and now it was time to try again.

After 6 months of battle with the insurance companies, I was finally authorized to try this new drug, Harvoni. Six months, one pill a day, and I made them swear – minimal side effects.

They were true to their word.

After six months on Harvoni and another three to make certain it was effective, I got my final blood tests back this past Wednesday – and I am officially cured of Hepatitis-C.
When John called to tell me the news, I didn’t have the heart to tell him what I really feel – that this is an empty victory. That the damage has been done. Being cured of Hep-C at this point means nearly nothing. While the virus caused the problems, they are their own entity. Hep-C was the gun – but the bullet caused the destruction.

I still need to take the herbs daily, still need to watch my diet & eat the best things possible – but now there is a new fight, a new goal. One Western Medicine says isn’t possible – but Western medicine also calls me a “miracle” for coming out the other side of the hell I went through, and should be dead.

I’m alive because *you* didn’t give up on me.

I’m not a miracle more than anyone else is – I just chose to believe that I WOULD live – and now, I choose to believe that I WILL reverse the cirrhosis, and have a healthy liver. No ascites, edema – and when I accomplish that, I’ll be able to inspire others to know that it IS possible – and show them how *I* did it. Even if what I do doesn’t work for them, at least they will know that it is possible – and if they let me, I intend to be there for them as LIVING proof. As I didn’t have anything like that, they will already have an advantage over me, and because of that, I am ecstatic.

But at least for now, I still need your help. You’ve kept me alive this long, and because of you (& that “being alive thing) I was able to finally find my Birth Mother – and now, the book is in high gear and I’m fucking THRILLED.

Thanks to a dear friend in Amsterdam (who I have never met – yet) I was able to afford some critical things I needed for the creation of the Kickstarter, help building an author website, and of course, herbs & good food – *even* one of the most important things for my spirit, which was getting out and being around friends and a trip to visit my Mother.

Now, I need *your* help again, if you can. If you’re still willing, if you want to see just how far I can take this. I am GOING to reverse the cirrhosis – but I need the specific herbs to do that with.

If you can – please help. My paypal is ksea@culturefluxmagazine – and I will be grateful for anything to help me achieve this – to conquer the final thing that they say I can’t.

Thank you again, & again.

I love you.

~ Casey

Lifeblood

Sooo… yeah.
I guess it’s about that time, isn’t it? I’ve been bad at keeping up in my online journal for the past… amount of time. I should do that/this before it gets out of hand, and there’s so much to say that nothing is said at all. Gots to feed the veuyerlits. (Hmm… Vueyerlits? Nope, not a word – or, at least wasn’t until now. Vueyerlit {n} def: One who more or less kinda closely follows (when they have time) the life of another through their writing.

But I digress. Things & stuffs. They’ve been happening. First, lets get that health crap out of the way. In two (TWO!) days I go in to get my bloodwork done – and this is the one I’ve been busting my ass to make right. Eating all the proper foods, staying away from detrimental ones, taking twice the dose of the herbs I need that will help (have to – since my liver is pretty much one big internal scar, I don’t absorb things the way I “should”. (and this is perhaps one of the VERY few times I would be happy to conform to what I “should” do.)

I’ve done all I could, spent nearly every dollar (except the $10 for Bernie & a bit for Isa A Shisha) on things that would help raise my platelets, red & white cells, & iron. All for surgery on my navel, which I have a CRAZY irrational phobia of other people touching – much less hacking away at. (What the HELL am I thinking? Just give me the manual and a scalpel. I’ll do this shit myself! Step away from my belly button, and no one gets hurt – got it?)

So now – money is gone, a few days left on food & the herbs – and countdown to 0:00, which is actually at 9:30am this Thursday, begins. There’s no reason to be nervous – at this point it’s either a pass or fail, essentially – and thanks to all of you, I’ve done all that I could. I’m sure as fuck going to HOPE, though – for whatever that’s worth… and continue with the mind/body meditations that got me out of the hospice, because I KNOW that helps – and hey, if any of you could slide some good energy my way, it sure would be appreciated… min’s running a tad low.

Oh, yeah. One other thing happens on that day, with the same bloodwork. It marks the 3 month limit they set… soooo, if the Hep-C virus is STILL undetectable, I am “officially” CURED OF FUCKING HEP-C!

Man. Talk about a fucking day – and I’m usually just barely getting out of bed at that time.

So, you may ask – what does being cured of Hep-C mean? Answer: Besides having the weight of possibly infecting someone else lifted off of my shoulders after fucking YEARS – not a damn thing, really. Well – the disease won’t progress, but fuck – at this point, where the hell does it have left to go? The damage – that’s been long, long since done.

BUT – NOW, I’m on a mission to figure out what herbs & concoctions can actually reverse cirrhosis. Western med can’t do it – but I’ll bet you my life (literally – haha?) that I can.

Aaaand – as if all of that wasn’t enough – there’s MORE! This is the good shit though – it’s easy, and short.
Three weeks after pulling the surprise attack on my Mother – she finally fucking called. Just to say hi, say she’s feeling better, getting around easier, and how am I?
After 10-11 months of not hearing a word from her, even through my birthday, the visit worked – and I owe it all to Kitty, who drove all the way from Sacramento to pick me up and take me another 3 hours North.

I put her pictures up again.

And yeah, there’s more – there always is, isn’t there? Even, at the rare times, where the outside is relatively calm – the mind never rests.
I fucking love it for that… but that’s for another time.

Maybe tomorrow.
Until again, I love you – and thank you for keeping me alive for all of this.

One last: and strangely enough, it’s actually an original kSea quote – I looked!

“Never let logic get in the way of your dreams.”

I fucking love you.

 

To do it right…

I’ve been playing a dangerous game. Cutting corners, taking far less than I know I should in order to stretch it all just a little bit further, keeping a close eye on it all, noticing everything that was okay or about to go wrong, and hoping it wasn’t too late to fix.

I watched my legs begin to swell, and instead of taking more herbs to fix it I opened them up, draining the fluid that way. A tiny hole in each ankle a couple hours before I went to sleep, that’s all – but the fluid that was built up continued to flow all through the night, saturating the towels I had stacked underneath. Even when I was woken up with my legs cramping I let them continue until the morning, when I finally put a small drop of super-glue on each to staunch the flow. It’s the only thing that works, when the skin begins to dry & wrinkle & feel thin as paper.

It’s a foolish way to achieve what I needed to, I know that – but it kept me from needing to ask for help at least a little bit longer.

Now, I need to. Nearly ALL of my herbs are down to the last, and I have no money to get the foods I need or more coconut water for effective hydration.

Again, I need help – but hey, even though I did it the wrong way, at least it’s been over a month since I last asked!

Meanwhile, I’m continuing to work diligently on what I can give you – my book. Right now, it’s the only way I can repay the energy you share with me – but I AM getting better, and as I continue to – as I continue to work on getting my strength & health back, there will be more & more things I will be able to offer…

So if you can, please help. That leaky-leg crap – well, I’d like to avoid it in the future & do this *RIGHT.

I can’t thank you enough for all of your help – but I’m sure as hell trying, even if it’s simply passing it forward by giving old clothes & boots & blankets to the people who need them in my neighborhood… I do what *I can.

My paypal addy is ksea@culturefluxmagazine.com – and whether you can or can’t help, that doesn’t matter – I’m still going to love you.
To your health! (& mine),

~ Casey (kSea flux)

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