A perfect amount of less time

I certainly didn’t expect for this to happen. It wasn’t planned, calculated or intentional in any way. I’m entirely a victim of circumstance, and it was so organic and clever in the way it took over my life that I didn’t even notice it happening. It took the days hours, divided them up loosely so that I still felt I had control over the profound inertia of my life & wouldn’t notice until it was too late, and without even bothering to check with me, all of the sudden there is something of a schedule that dictates my days. Goddamn, it was sneaky.

The odd thing is that in the past I tried, tried desperately to have some kind of structure in my days, but the more strict I tried to be with myself & my time, the more a different part of me rebelled. My subconscious mind teamed up with my instinctive and astonishing ability to procrastinate and all my meticulous planning and promises to myself that this time, dammit, I will DO it – was inevitably shot to hell within a few days.

But then the schedule happened to me. I’ll get to how in a minute.
I’m still able to wake up & fall asleep at any odd hour I want, but once awake the gears are set in motion, and I have little choice but to just go along for the ride.

All I needed to do was write. That’s all. For a few hours each day, I would write, and the rest of the time I was free to fill with all the apathy & indifference for life that I could fit in.
The problem was that since I had so much freedom with time, I figured that I could write whenever I wished – when waking up & still in bed, or at one of the cafés that I would write on my “to-do” pad the previous evening (which held such gems as “Walk Ruby”, “take shower”, “call or write… anyone”) or if I had food, I could write after a dinner of tater-tots or rice & beans. I could write anytime – so I never did. I didn’t write, I didn’t go anywhere, didn’t do anything, with the exception of reading.  I even tried to make it exciting by actually going all the way over to my little couch (calling it a “love seat” would be depressingly misleading) – but I couldn’t ever seem to make it the six feet it would take to get all the way over there.

Then one day, while shopping on Amazon for the medicinal herbs I would be able to buy in a few weeks when I got my disability check as well as other things like knives, books, a new belt for my umbilical hernia, books, and anything else I could think of to fantasize about, I looked on the side of the screen and saw that Amazon figured that I might like a bag of around 4000 shiny aluminum jump rings. Because that made perfect sense.

Curious as to why in this empty grey existence of mine their bots would think that, and though I had countless other much more important things to search for like wing tipped tuxedo shirts, extension cords and creepy doll heads, I clicked on the picture.

Hmm. Chain mail? Make chain mail? You’ve got to be kidding me. There is absolutely no way I would have the patience to sit there for hours, weaving ring by ring into something that looked like anything good, unless some poor idiot somewhere could be convinced that what I created with the three rings I had the patience to sit down, open, connect, and close again some sort of brilliant minimalist art. As blindly optimistic as I usually am, sometimes even I need to open my eyes and see the reality of something so unlikely. I mean, it takes all the willpower I have just to write for 15 minutes straight – who am I do have the nerve to think that I could sit for hours and hours to make just ONE piece of jewelry?

But then I saw the book that people apparently bought when they bought the rings. And the pretty pictures, right there on the cover. The pictures of things that the book would show me how to make and that I would make and people would like because of my innate and incomparable sense of style, and I would sell them and be flown around the world with my dog in private jets to create amazing things for only the coolest famous people – or at least the ones that aren’t dead yet, I figured. It’s fun to think about, and while I could definitely see the cool stuff, I couldn’t see me doing anything that involved sitting at a desk for so long. Perhaps the biggest fear was the knowledge of how many things I have begun & never followed through on. Those things continue to haunt me, and I was terrified of this being another one…

I got a little sick when I ordered the rings & the book with pretty pictures instead of a couple bottles of the herbs I need to keep me alive & healthy-ish, but looking back all these weeks to the beginning of when all this began in January, that was a small price to pay – and besides, the infection seems to nearly be gone.

So now I have a schedule – or more accurately, I was mugged by a schedule which sneaked up on me from behind, knocked me unconscious, and when I woke up, it had already made itself at home in my life.

I find it interesting that when I have absolutely nothing to do, I can’t even find the time to sweep up the dog hair in my apartment. It’s like there is too much time to do anything. I’ve never been able to figure that one out. Is it just me? Do I have some weird mental disorder concerning time? Is it like a buffet where there is so much amazing food that I can’t choose anything, or an enormous bookstore filled with so much that I wander the endless aisles for hours and walking out with nothing?

Now my entire world has changed. It’s as if after years I finally thought of the last line to the best poem I had written. It’s the torn-out chapter that brings the entire plot together, found in another inmate’s cell a week before I’m released. It’s the rug that really, like, ties the room together, man.

I get up, read for a bit, write nearly without fail for a few hours, while drinking coffee in bed. When I feel either like I’m at a stopping point or mid-afternoon is creeping up far too quickly, I get dressed, take The Beast out while I do errands, and have even been taking her to the park more frequently. I get home, putz around briefly and nearly every-other day run my Swiffer over the floor to gather the nearly unbelievable amounts of dog hair that it acquires. I stretch a bit, sit down at my work desk (which unfortunately never lived up to its name of a “writing” desk. It feels far too strict and demanding when I actually try to use it for the purpose I bought it, like it’s secretly judging me) – and get to work on chainmaille. After a few hours I have an insatiable urge to take a nap for an hour or so – but the nap is the slippery part. When I started, the nap would fall at a vaguely decent hour, usually 3-4 pm, and I’d wake after an hour or so refreshed and ready to get back to work – but as the days progressed with the fun & challenge of making more creative pieces, I ended up feeling better and as a result worked later into the night, I sometimes not being able to put the pliers down until 4 or 5am. There was a glitch brewing.

I still follow the agenda, it’s just that the actual time of day has no place in it, and as the rest of this silly world has the audacity to run on their time instead of mine – that makes the time I have for writing sometimes unbearably short, and now that I’m regularly doing it again, I need my fix. Seriously. It’s like a drug. If I don’t have time to write when I wake up (which after a late night could be 1pm), I find myself being irritable, miserable and easily pissed off the rest of the day. I imagine that the people driving in traffic who can’t help but lean on their damned car horns when there is absolutely nowhere the person in front of them can go must feel this way – I just don’t have anything to honk.

I haven’t tried it yet, but if it ever does happen where I find myself around someone I’m just being a plain bastard to for no reason, maybe the solution is pulling out my notebook & pen while I ask them to wait for a moment? Of course, what I write may be something like “I think this person is an ignorant, idiotic, pathetic little subhuman whose cartoid artery I would like to puncture repeatedly with this pen.” – but the irony is that after I wrote that (then quickly closed my notebook I shoved it back into my pocket before anyone could see it), the urge would likely be gone and I could stand there silently, looking them directly in the eyes with a diabolical smirk on my face until they felt uncomfortable enough to go away.
Or I guess I could write something like “Chill the fuck out, Flux. They’re probably really nice, and it’s you being the asshole because you didn’t get your writing fix, poor baby.” That just wouldn’t be as much fun though. Did I happen to mention that there’s a somewhat wicked streak in me?

In order to make this “schedule” work inside the time frame set by those “other” people, I have created a reset button – which is why this morning’s therapy is edging up to nearly 1,500 words. All I need to do is take a break from the post-nap chainmaille creation for an evening, and get to bed at an absurdly early hour – such as 7 or 8pm – then wake up at 3 or 4 am, microwave the coffee I make much more than enough of every few days so I don’t have to wait for it to brew, light some incense, crawl back into bed, and start the day – with plenty of day left to enjoy this new life where, for the first time in far, far too long, I feel like I’m beginning to live a life of doing things I love again. I’m writing, I’m creating, I’m making things that people really seem to like and are eager to buy, and instead of days full of emptiness and ennui, instead of feeling valueless and insignificant, I feel good. Hell, I’m even getting some real work done on my book – something that is solid and workable, instead of the 5 years of constructive procrastination that I’ve been using to pretend that I was doing something on it.

I really should offer classes on professional procrastination. I don’t think that anyone can compare to my level of self-deception when it comes to that.

So yeah. Because of some shiny rings and the remembered courage not to let my fear stop me again, to at least try, and if that didn’t work, fucking try harder, things are looking up in my life.
I might even be able to honestly say I’m happy – at least with this part of it… and considering how I’ve felt for the past few years, that feels really good to be able to say, and mean.

Here are just a few of the things I’ve made, because I know you’re unbearably excited to see some of it. Mind you, I’ve only been doing this for about seven weeks…

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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.

another day

Wednesday comes around again just as it always has & probably always will in my lifetime, gods willing. I wake up early and feel uncommonly refreshed from a good nights sleep with strange dreams I don’t remember enough to write down.

Give the pup a hug, crawl out of bed & make my way to my kitchen, make a small cup of coffee to warm me, take the herbs that sustain me, the first set always the ones I need to take on an empty stomach. Later, after I dig up something to eat, I’ll take the herbs that require something in my stomach. A daily process. I’m weary of it, but the alternative is far worse than a bit of inconvenience.

Adjusting the pillows I crawl back on my bed, put down a little more than 1600 words of a book that might get done but never finished and wonder at the futility. I try to push that thought from my head and bring it back to the passion of a dream.
I don’t succeed. Not this time. I haven’t been able to believe in my future since I was nineteen years old & was told I had contracted HIV. The book seems so horribly far away…

Today marks the twelfth day I didn’t take morphine in order to get out of bed, the sixth I didn’t desperately want to. Nine fucking years and at long last I’ve broken the chains that held me. Right now it feels wonderful, I feel like I’ve won another battle, but I know that eventually this will fade into the past like the others I’ve made it through.

It seems as if the more I go through, the less surviving and making it through the battles means to me, and I wonder if that’s a product of the life I’ve been living, where so little happens these days. It seems as if it should be the other way around, where things like this are lost in the excitement of life, but… perhaps it’s because this is my life.

Just as I don’t celebrate the ability to get out of bed anymore, just as I don’t think about the way that only a few years ago I couldn’t walk without aid to the bathroom or breathe without a tube down my throat.

I’m not ungrateful. Every night after I crawl into bed, before sleep, I thank the Universe for that day, for my life, for the amazing things that have happened since I walked out of the hospice – but I wonder where my life has gone.

So many years watching the world go by and not able to be a part of it, is it disdain for who I’ve had to become to survive? From working on CultureFlux ten or more hours a day directly to not doing anything but fighting for my life – and suddenly it was all about me. I don’t think that has ever sat well in my heart, and perhaps even now I carry it there.

I’m trying to figure this out.

There’s the oppressive frustration of feeling bound by income, of not being able to even earn the simplest things I require to survive – the herbs, nourishment, hydration – and beyond that. Trapped by my own needs this poverty, this impoverished life I’ve been living for so goddamn long has taken its toll on my psyche. The walls of the city constrict me, suck the wonder & light out of my eyes & spirit.

I’ve never been one to live a static life.

Regardless, I’m alive. Not living, but alive, and I still have the ability to change this life into whatever I want it to be – if I can find the way out of this. When I find my way out of this, and rediscover the passion I once felt.

It’s not up to anyone but me.

I just need to do it soon.

Right now, Wednesday is nothing but just another day that I need to make it through.

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

 

 

 

Passion

There is a certain point where security becomes confinement. A point where freedom feels too open-ended & vast.

But in between these is a small line that we do our best to balance on, arms out and leaning from side to side That is what we – the dreamers, artists, writers; those who thrill on fulfilling the potential that we have been blessed with – struggle to maintain.

We must continue to tap into our inner strength, to inhale the beauty of life until our hearts nearly explode in wonder and amazement & love, to squeeze every drop out of what we have to give to the world so that we feel our lives were not lived in vain.

That, in the end, we made a difference.

 

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

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)