Closer…

 

I can feel it getting closer.

What began as something that I thought would be easy over a year ago quickly revealed itself to me that it wasn’t when I got down to the work involved. This wasn’t something that I could take lightly – and I was far from prepared to deal with the way my own fears made me stumble along the way… but I kept at it.

It’s all I had.

Now, what I perceive as the hardest part – the part that tested me, made sure I had what it takes as I read, studied and re-wrote every work on every page in every part about 20 times is nearly over, and soon I get to do what this has all been buiding up to – write my book.

It’s amazing what I have learned over the time I have been putting the first part of this project together, and there have often been times where I think that I learned *too* much, as with nearly each new discovery came a new change that need to be made and what I thought might be alright before simply wasn’t anymore. Not for me, at least…

But soon it will be over – I’ll be able to focus on what it has all been building up to – and just as importantly, I’ll be able to quit being consumed by the emotional walls it is necessary to get through every time I need to ask for help for the herbs I need to stay alive, and, at long last, be able to support my SELF and the things I need.

NGG.DreamersLoveLetter

I’m not going to pretend that writing this book is going to be anything even *close* to easy, and the process of it – rough draft, re-write, editing, design, promotion, etc. will be quite a task – as well as the rawness of emotion that I will need to re-live will at times, I’m sure, rip my soul apart… but the exciting thing is that it WILL get done, each & every day a bit more – and it will help someone else.

It *will* help.
And I can feel it getting closer…

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The Way It Works / The Circle

The comforter loosely tucked around my body, the cool air from the slightly open window on my arms a perfect contrast to the soft warmth underneath. Cozy, warm & content as I sit up against the softness of my pillows, Ruby asleep with her back pressed tight against my legs. A single candle glows softly in the sconce on the wall behind me offering just enough light to pick out the letters on my laptop – in the quiet & solitude of 4:30am, the sudden brightness of my reading lamp would shatter this perfect moment.
I can barely see anything.
Screw it. I’ll squint.

I had just woken up thinking how amazing it can be, when things are used well.

Thanks to a few incredible people who are still lifting my spirits, still, even after all this time reminding me that is still one HELL of a warrior inside of me…

– & some ‘creative logic’ on my part in the herb & food needs (i.e. “I *think* I can stretch that out until… um… the 1st? Shit.”) – I was able to afford to take a journey out to El Cerrito yesterday to visit an incredible friend, woman, & fellow warrior who is going through her own medical hell – getting two different, completely soul-crushing messages about 48 hours apart like a fucking double-tap to the heart.

We had a kickass day, hanging out in her room, talking, laughing so hard I *honestly* thought my guts might finally come flying out of me (I was holding them in, squeezing as hard as I could with both arms & yelling at her to shut up before I popped – but would she? NoooOOOoooo – the bitch!) and… just remembering what it felt like to be *normal* people for a few hours, watching stupid TV, singing songs at the top of our lungs and giving each other loving hell.

I needed it just as much as she did, if not quite a bit more. There’s a healing in just simply that connection, that amount of love that that no medicine, no herb, no “perfect living” can *ever* equal.

We talked about our animals, and both wondered if either of us would still be alive without them… and she had the amazing idea of making a Youtube video about the caring for them – what they like, what they need, can or can’t eat – what makes them happy, the treats they like or a certain way they like to be scratched, or petted – or not…
Just in case.

Just in case so if anything ever did happen, if we weren’t able to talk or move or…

Then at least we would know that, even then, we still did our best for them…
On the way out there, some dancers got on the BART train, did their speech blahblahblah… and as they began I moved my eyes up from my writing, looked at them – then looked around at the other passengers, who were nearly ALL doing their best to ignore these courageous kids who were dancing for THEM, maybe in hopes to shine a little more color on the grey, Friday evening lives they lived.

They were, actually, pretty good! Did that new thing where it looks like your entire upper body has had every bone broken and swivels put in to repair the job instead of pins.
And thanks to those who help *me* – I was able to offer them something. I pulled out $5 – not much but a lot for me at the time, and the worst part is – I was sitting four rows back from the door, and as the hat-holder got to me after I *called* him to come over – that $5 was the only bill that they left with.
Still, they left the car in style – saying their thank-you’s & smiling.

After the day with Isa & finally back in the City, walking through Civic Center BART there were a couple guys around my age setting up – one in a wheelchair, but still somehow tall & lanky with pencil-dreads, his partner shorter but still thin, and looking close you could see what appeared to be not an easy life in their faces.

Then, as I took the first couple of steps up the escalator, they started singing – and I jumped back down. Goddamn. They sang an old spiritual, lanky in a *low* base & his partner harmonizing beautifully – I had $3 left in my pocket, so gave them that…

and I made my way back up the escalator into the frigid San Francisco night with my p-coat pulled tight, hat brim down – and an enormous smile beaming out from underneath it, still humming the spiritual.
And none of this would have ever been able to happen without you – you know who you are.
Thank you.

 

A decision that could either kill or heal…

(Five minute read.)

Something needs to change.
There are many nights, laying in the same room, same bed for the past four years… many nights, after I close my book & turn off the light, before I shut my eyes and I give myself over to randomness of thought, it’s at these times when it all seems so unreal and it feels as if I’m only a rough sketch, indiscernible, an extra in the life I once starred in.
I seem to have forgotten who I am again. Who I was. Who I want to be.
The fight drains out of me, the passion for life I once had has been lost along the way, replaced by the fight not to die. They’re not the same in any way, I’ve found.

One keeps the mind engaged, excited, learning how to get past the challenges and constantly growing, becoming more, creating anything out of nothing.

The other is just fighting to stay well – being reminded that I’m sick every single time I need to ask for help, seldom being able to escape that as the focus of my primary existence.

Each morning and night I do a meditation, one that focuses on repairing my liver & giving thanks for another day. This meditation helps – I am certain beyond doubt that is what played a large role in surviving when I was in the hospice…
Yet each time I have to ask for financial help to get herbs, it rips that apart and I need to spend days building up the nerve to ask again, all the while thinking of what will happen if I don’t ask.

But having to ask, having to focus all my thoughts on what is killing me, is perhaps the main reason that it’s taking so long to get better, to get *well* – so after this, I won’t be asking anymore.

There’s a vicious battle inside of me each time the herbs begin to run out and I want more than anything to simply be able to throw them all away or give them to someone else, and as I begin to die again I have this vision, this dream of finally being able to live life, even if only for a short time. No research on what would keep me healthy because it wouldn’t matter anymore, finding the passion I once had to LIVE and make every minute count, knowing that they were quickly ticking off…

But I can’t do that. I made commitments – to myself, and a very few of my older friends – the people that shared parts of my life besides just occasionally, accidentally seeing me “out”…
Now, the battle is with myself. I need to figure out how to make life feel real again – and I know exactly where to start.

The cirrhosis is what is killing me – the cause of every symptom, from the swelling to the anemia to the severe lack of energy, and all the pain & discomfort those bring. There are herbs that, if taken regularly, will be able to reduce the cirrhosis to the point where my liver does what naturally comes to it & rebuild itself, repair itself – but those are the herbs I can’t regularly afford.
I’m slowly dying for one reason and one reason alone – I can’t afford to live.

But – I can’t ask for your help anymore either.

In no way does this mean I won’t continue to need the herbs and your help just as much – but I also know the power the mind has over the body, and my mind has to think thoughts of getting well again instead of describing over & over to you what will happen without the herbs I need in hopes to inspire you to help me.

To put it simply, one last time – without the herbs to keep the cirrhosis from getting worse, without the herbs taken on a strict, regular basis to help heal it – I will die.

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

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

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I will still desperately need your help – it’s what HAS kept me alive this entire time – well, that and the shitload of will I have inside of me *not* to die – you just aren’t going to hear about it anymore.
I can’t expect to get better when all I do is whine about being sick, in pain, and terrified… so I leave it up to you now. You won’t hear anymore from me regarding being sick after this. I’m putting myself in a fragile position, but I can’t help but think it is for the best. For all of us.

One more time, My Paypal address: kSea@CultureFluxMagazine.com

The GoFundMe page a friend set up is at: https://www.gofundme.com/fightingkflux 

So finally, I will be writing about other things again. The things I used to write about. The beauty I see, the magick all around us, and yes, silly observations about daily life in general.
I’m looking forward to that.

I love you – be well…
And PLEASE, Share this – and if you can, support this goal I have of getting well, not just… not just not dying.

Until again,
~ Casey

P.S. – To those who have written me privately or commented on posts saying that I inspire them to fight through their illness, please keep doing so. Continue to ask me questions, continue to stay in contact, and above all, continue to fight – but the above is the best advice I think I can give to anyone; focus on your LIFE, not what is preventing you from living it in the fullest way you can.

 

Enough is Enough/The Scourge

(PLEASE take a minute & read to the end to realize how far we’ve come. Thank you! ~ C)

I would much rather be talking about something like my book sales (soon!), amount of people the book has helped, or Bernie’s lead in the polls when I say “It just keeps getting bigger!” – and I have little doubt that soon I will be able to say it about those things, but unfortunately in this case, I’m not. I’m talking about something so revolting, so unnecessary, and something that could either continue to be the scourge of my existence, haunting my every moment with it’s curse & making every possible romantic interest run away screaming in revulsion – or simply be fixed in a couple hours, letting me live the life I (we) have fought so hard for over the past years.

Yeah, I’m talking about my godsdamned umbilical hernia. It grows. It laughs at me. Even the old beat up truss I use can’t contain it anymore. (It keeps slipping down.)

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It now has a new addition – a permanent “band aid”. Due to the constant chafing on my shirt, regardless of how tight I make the truss each morning, I have an open wound the size of a dime that simply refuses to heal… but there MAY be good news, just around the corner.

In 6 days, I FINALLY go in for a surgery consultation, and this is the point where they decide if they will perform the surgery necessary to make everything right again.

It’s absurd how (I’ve let) something as dumb as this has taken so much control over my enjoyment of life.

There are a few reasons that they wouldn’t agree to perform the surgery as far as I know, which are too much fluid in my abdomen, platelets so low that they would be afraid that I’ll never stop bleeding until the pump shuts down, or they’re curious to see what it looks like when a person’s guts come popping out of his belly like one of those “party popper” things with the streamers that we shoot in people’s hair.
I’m pretty sure we can cancel out the later though, as hell – this is SFGH, and I’m SURE they’ve seen their fair share of guts not neatly tucked into the body where they belong.

In order to have the best chance of not having either of the other two make them deny my surgery however (brief pause for AWWWwww! Ruby’s having a tail-wagging dream right now!)

Anyway, as I was saying, in order to have the best chance of getting my intestines back where they belong so I don’t have to deal with the daily physical pain & all the other stuff – I need your help. Again.

I’ve been taking over twice the dose of the herbs that will help (due to my poorly functioning liver & mal-absorption of everything, it’s necessary) and ran out, just a couple days ago. Already, the fluid is building up, my abdomen & legs are beginning to swell, and the pain and pressure builds.

As I’m sure you can imagine, even if you’re on of the few who haven’t been there, it’s horribly demeaning to still have to ask for help. Through most of my life, as broke as I’ve been, I’ve almost always – ALWAYS found a way to make it work out, save for a few past emergencies. Even though each time I feel like I take every bit of my dignity & throw it out the window – I have no choice other than to plead for you to help me in this fight again.

My paypal addy is ksea@culturefluxmagazine.com

The good news is that we ARE winning! There are quite a number of herbs that I’ve been able to cut down on or quit altogether, and the physical difference in me from just a couple of months ago is incredible. I have more energy, can put my shoes & socks on without needing to contort myself in strange ways just to reach my feet, and no more pools of blood or fluid from scratching off the tiniest scab. You ARE making a HUGE difference in my life, and for that, I will be eternally grateful.

So please, if you can, I need your financial support to get rid of this damned hernia! We’re getting so incredibly close to what you’ve all been helping me reach for – let’s keep on making this dream come true – and THANK YOU!

That address once again – ksea@culturefluxmagazine.com

Love love love,

~ Casey

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in silent screams

I leave one message for her, then another after a few days, a week… then twenty, thirty over the months. After a short while I find I’m talking to her answering machine, having almost conversations, telling it what I’ve been up to, how my day was, my week. It’s silent as I tell it that I think I’m getting better, that I wish she could meet some of the amazing people who are helping to keep me alive…

but it’s never her.

It must be around eight months now, maybe nine since I’ve heard my Mother’s voice – or heard from her at all. There’s been some amazing news that I told her answering machine; I’ve met my Blood Father with whom, on that fated New Years Eve of ’66/’67, she created me. The last time we talked, when he & I were only barely beginning to plan it, I asked her how she felt about me meeting him, & she said she was completely cool with it – “He’s a really sweet man.”, She said. He is… I was in & out of the hospital, been cured of Hep-C.
My Birthday has long since come & gone. The day she watched as I took my first breath… the day that only after we met meant anything to me slid by without a word from her.

I went to a small party which only by coincidence was the same day – dusted off & put on the well-practiced smile that hides everything else churning & twisting beneath the surface so that no one knew & it didn’t dampen the moods of my friends.
Hell, over this lifetime its gotten to the point where even I believe the mask I wear for those moments,,, until I get home, check the mailbox and again find it empty.

Maybe everything is broken, and she’s not getting any of my messages. Maybe she doesn’t check them. Maybe it is just too much for her and she has left me with nothing but silence, confusion, – and far too few beautiful memories of the times we had together… just like the others.
Maybe I did something wrong.

Maybe… this was a mistake. Maybe there was something past the smile that I never saw, the few times I was able to get up there to see her. An uncertainty, a fear…
Maybe I planted myself in her life too quickly and grew up too fast in the 47 years since she last saw me, one day a baby fresh from her womb, and the next, a man who has already lived a full life that she wasn’t allowed to be a part of.
Maybe, I did something wrong.

Maybe… I’m broken.

I’ve sent two letters now, another one will arrive for her shortly after thanksgiving. I’m thinking of sending a stamped & addressed envelope in this one. Maybe with a note to me with multiple choice answers.

Hi Casey!
Great to get your letters. I’m doing a)great b)pretty good c) busy, and I/I’m a)VERY sorry b) insanely busy with work c) have been feeling kind of down, but/and meant to write/call…

My ½ sister – her daughter, who I talk to about mom every month or so when we go to the archery range or dog park says not to worry; that maybe mom is feeling bad because she wasn’t able to be here for me, and she’s been a bit depressed lately anyways, not really being able to get around due to her recent hip transplants, or….or….

If I had a car I would have been up there long ago – maybe.
Probably. I understand the need & desire to be alone, but this has gotten to the point where it has just fucking become selfish.

It’s been 2 years & 6 days since the first time in my life I saw my Mother’s face. Could hold her in my arms. Could, at last, after 46 years… feel wanted. I found the heart that I belonged in.

I think of her every day, miss her – especially now, with the holidays here & looming, a time when we should be together – if even only through a phone call.

She always seemed so excited to see me in the few times I’ve been able to get up there.
Maybe she had a change of heart, and closed the part where I seemed to fit so perfectly before.
Maybe there will be a beautiful letter in a plain white envelope waiting for me in my mailbox tomorrow.

I don’t know.
Her answering machine ain’t talking.

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!

making a difference

Monday. 6:43am, my eyes slowly open & let the small amount of light in my apartment in. Stretch, take a mental note making sure my legs are still there, and if they are how adventurous they may feel after having the whole night off.
They’re there, seem okay but still swollen, we’ll check out the standing thing in a minute – and then walking. The first 10 or 20 steps are always the hardest as the stiffness & pain reluctantly subsides, but this morning there is some extra motivation:
With immense gratitude to Thad & Geri, there is a bag of deep, dark, rich PEET’S COFFEE just about 20 steps away (normally around 5, but these mornings the first steps are more along the lines of heel to toe shuffles, a la old man get off my lawn & where’s my gaddamn Jello).

I put the water on, coffee in the press, bring out my favorite over-sized ceramic mug that has stuck with me & somehow survived our travels & turmoil over roughly the past 17 years.
If I were a coffee mug, I would be this one.

Coffee ready, the aroma already making me smile in anticipation, I take the first sip of *real* coffee I’ve had in over a month.

Ahhhhh….. Sweet elixir of life.

It’s a busy day ahead. Two Dr. appointments, more work on the apartment, the intention to do ALL THE LAUNDRY IN THE WORLD.

With coffee & smokeytreat I prepare for a much needed body cleansing – a bath to loosen & remove dead flesh on legs & feet (I’m molting) and then shower to strip the sgragglyhair on my face that will never, ever let me be a hipster, and wash the hell out of my body – so very long overdue.

First however, I need to remove the dressing. No problem – thankfully I’ve been doing my own wound care for years, when necessary.
There’s a hole in my foot still, and as I pull off the main bandage I see the end of the packing fuse. I didn’t dress it last time, so curious as to how deep the hole is – how much is in there.
I grab the end with the tweezers, and gently start pulling. And pulling. and pulling.

Whoa, cool! I have a friggin’ *stash* in my foot!

….. I need to stop for a while here. I’ve been on my legs all day, and they’re not really digging it too much – but they need the work as well.
Oh, yeah – and when I got back from the Dr., I walked into the foyer of my building and decided something – if I’m going to move forward in the healing, strengthen my atrophied muscles – I need to do make it happen… so with the elevator beckoning, the sirens singing their song for the easy way up, I was able to break free from their seduction and move towards a higher purpose – the STAIRS.

Including the entrance, 49 of ’em, with the bare minimum of help from the hand rail.
I didn’t need to do this, but I did – because I fucking rock, and I made those stairs my bitches!
(Even though it was very slowly, they’re still mah bitches, yo.)

Now I REALLY need to shut the hell up & get my legs on a horizontal plane.

Love love love the ALLS of you, and thank you for all the ways you have been helping, the boosts of encouragement, and just all around… *everything*!

Please, also, rememner to keep getting the word out there for the GoFundMe thing – from special socks to medical equipment to gadgets to help me come back physically, herbs & potions and…

and now that I think about it, this is the first time *ever* sinceI got out of the hospice four years ago that I haven’t had the ever-present but faint cloud of stress hanging over me because I could *never* get what I needed to really make a difference – not on my total of $400/mo for bills, herbs, & food.

You are taking that stress away, allowing me to finally focus completely on getting better, and focus on the *most* important goal – the writing & completion of my book, and changing the world through helping people.

You are making an amazing difference in my life., An immense one.

A permanent one.
Thank you.

Now pardon me while I *finally* put my damned legs up and blubber a little bit.