ritual

 

Friday morning. Just before 6am.

It’s a practice I’ve begun recently out of curiosity – yet another experiment on myself, though this one much more mental than physical (Though in trying to coax my body to get out of bed before 6am, I could swear that I hear it make the creaky horror-movie coffin lid sounds in complaint).

Stumble t othe kitchen, make coffee or chai or tea or whatever I have at the time that resembles a tasty hot beverage. If I have the mixin’s, make some sort of smoothie. If not, effectively pout for a few minutes then get over it. I have gotten pretty decent at making minimalist smoothies that taste halfway decent. I prefer not to pout, but I’ve decided it’s required for some reason, even if it only lasts as long as an extended sigh.

Crawl back into bed, prop myself up with pillows, pull up the comforter to my chest & close my eyes for a few minutes to clear my head and pull my laptop from the bed-stand to my lap, avoiding resting it on my hernia. I do my best (which so far, isn’t so fantastic) not to check emails, and avoid checking Facebook like the plague – which is surprisingly easy…

Then write. Write anything.

I’ve noticed that for quite a while there has been something lacking – or most likely, just slumbering, waiting for something besides the everyday commonplace to happen – but in going deeper, I realize that, even if I *do* the same thing every day – work, take Rubes out for a walk, work a bit more or run a few errands if I need to, then continue on with letting my mind fade into the evening until it feels like time to crawl back into bed & read – even if that never changes, the things swimming around inside my head – *they* do – and there is always something to write about. Always thoughts to untangle as they travel the path from this head of mine on to the paper or screen.

I’ve just gotten out of practice, that’s all.

Somewhere along the line, whether it was when I was in the hospice and my hands were blistering & it hurt to much to even tap the keys where the skin had come off and they would stick to the computer keyboard, leaving little smears of some sticky fluid and itching like 1000 mosquitoes were biting me from the *inside* – to the years of having so little energy I couldn’t even think right, to a multitude of other excuses that might explain why, somewhere along the line, I just stopped writing like I once did.

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After that, it was the fear of the words just not coming like they used to.
I kept comparing myself to the past – *my* past – the way I used to write, and only rarely saw me in the words anymore. When I did write, it felt forced.

Even with so many people still complimenting me, it didn’t feel like the words were mine to use anyore – as if I had to beg each one to come out in an order that made at least a little sense… like a lover giving me the silent treatment for neglecting them for so long…

Well, my dear words – I’ve stopped making excuses, stopped trying to find reasons why I wasn’t able to be there for you, and am working on changing my ways so that we can mend the rift that I created between us. Trust me – though I may feel a bit shaky & uncertain as we get to know each other again, I promise – I won’t abandon you again, for any reason.
I mean, hell – look at this morning! I could have so easily made an excuse not to write; my stomach is making me cringe in pain, the sleep I got was scattered at best, and it would have been so easy to say that I’ll make up for it later today or tomorrow, as I have – and failed to do, so many times in the past…

But I’ve learned something over time: I can’t make up for time not spent well. Once it is gone – it is gone, never to return.
And the most anyone ever gets is one morning each day.

With that, I say my brief farewells to my morning words – I’m fortunate enough to be able to lay back down for a couple hours right now & hope my guts quit being such whiny little pains in the ass.
I can’t tolerate whining.

Note to self: Coffee mixed with last nights chai to save on both – NOT a good idea… but hey, ya never learn if you don’t try…

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…

Getting out of the way of myself

(Begun)Saturday night, roughly 12:30am. GrassFish 2016
Post laydown recharge –
(Semi-completed) Monday, 5.17.16, the early waking hours before my feet hit the floor…

~ ~ ~ ~ ~
I’m tempted to say that I almost didn’t make up here, but now, ultimately, I know better. Some things are simply *meant* to happen, and we end up using more effort to ignore and fight the call than we would simply listening to the ‘Verse and accepting that it will *always* know what we need.
Of course, it’s simple to ignore or simply not notice, to have what *you* thought remain true to your expectations. It’s safe to remain in the bubble that we’ve created and go on with our daily lives, digging for any excuse available to remain in our world of woe-is-me. I never was like this before. Before the hospice.
I’ve let fear take over my thoughts.
A few months ago when this event was announced, a week of camping on a sublime campground 3 hours north of San Francisco, at that moment I resigned myself to most likely not being able to join.
All of the reasons and rationalities ran through my head in a valiant attempt to justify my decision: Finances, first & foremost. I had already asked for and received, in my mind, more than I deserved. Even though it was to help keep me alive, it still felt – will always feel – like I am asking for too much. If I asked for something simply to *enjoy* life instead of not dying, that would be abusing the kindness that has already been shown – and could possibly take away from the assistance that I actually *need* in the future to not only stay alive, but in the effort to get well.
Then of course there was Ruby, my dog, my companion, the one, who with her smiles and snuggles and dependency on me takes the sharpest edges off the loneliness that is an ever-increasing part of my world… and of course, the book project. Losing myself in the work & words & all of the things that need to happen so *it* can happen… no. I need to work. To dig my way out from under the poverty that keeps me stuck here, to finally be able to give back.
In my mind, it was settled. I simply couldn’t go to GrassFish.

I’ll tolerate the daily drudgery because the daily drudgery is easier than actually changing the ways that have been set for me – but that is *NOT* me. I wondered who this person was that I had become, wondered how this fearful bastard took control.

I looked back to the time before the sickness took hold of me, to that very moment I gave everything that I was *supposed* to do up and ran with a smile & wild look in my eyes to the edge of the cliff – and jumped – not even knowing if I even had wings but hoping that they might unfold… and if they didn’t, if my body & soul was shattered on the razor-sharp rocks below, then so be it.
I was done being someone else’s pawn, someone else’s work-horse.
I wanted to remember who I wanted to be, and become that person who I dreamt of as a child.
And I was more than willing to pay any cost to find him. To find, for the first time… me.

And I fell. I lost my car, had to sell off everything that I could simply to feed my dog & me in-between the odd-jobs I took – at one point I couldn’t help but laugh as I was surrounded by over $7,000 worth of original French Art-Deco lamps to rewire & had $3 & change in my pocket… but even though I was broke, hungry, and days away from getting the eviction notice on my apartment – something felt more right than it ever had before. With the odd-jobs I was helping people, and the stain left on my soul from my last “official” job was fading. I was absolutely terrified of what might happen next, but I had never felt so alive. There was a strange feeling inside that I remember then, hidden behind the terror and uncertainty, but at certain times it was much stronger and edged its way out to the front. The closest I can come to naming it is genuine happiness… the kind of happiness that begins at the core of your soul and makes your entire mind & body tingle, adds a vibrant light behind your eyes and a peacefulness in every motion you make.
I was doing something right. I was becoming me – and it was noticed.

From that moment on, it was easy to compare, in a way, to Alice falling down the rabbit hole. Things started falling into place. A dear friend hooked me up with a band that I had performed with before called The Dresden Dolls, and I started working with them – organizing performers for their shows around the world from wherever I could find a place to sleep after I was evicted – from a fetish dungeon (with rooms for all types of fetishes) to artist warehouses, friends couches and gods, the stories…
From being flown out to Boston, coming back to San Francisco, deciding to move there and being re-routed in route… just going wherever I was pointed, making the best of wherever I ended up.

I can’t say I wasn’t afraid, but I didn’t let the fear control me – and the world just kept opening itself up to me, as if everywhere I went there was the proverbial red carpet laid out on the roads and in my mind…

I created an online magazine, produced events, and even won an award. There was no stopping me…

and then I got sick.

Even though I somehow lived through that, the fear was so unknown & intense – knowing that at literally any moment I could die – that I don’t think I was ever able to shake it.
I still carry that fear, and only when this camping event came up and it came to the point that it would have taken more effort to hold onto it like a child’s security blanket and not go to GrassFish1 did I realize that the fear that I had worked so hard to move through in the past was now, again, acting as a barrier against living the life that I wanted.

When Tanya Mia offered me tickets, a place to sleep, and food when up there at the last moment, I still fought it. I couldn’t find someone I trusted enough to watch my dog, Ruby, with so little time to spare. Hells – I only had 1 day and with my mind battling me, couldn’t think of anyone… but wait, maybe? I sent a message, and the first person was busy. Good. See? I was right. I can’t go, but thanks.

But then there was another person I thought of. A long-shot as they’re usually busy and active, but… and then the reply came back. They can watch her but won’t be available until late Friday after work.
Okay. Now, a ride…

Ultimately, it worked out, and I was a fool for fighting it so hard – but through it all, I learned what I needed to –
1) that I need to let go of this fucking fear that’s been clinging to me ever since I was dying in the hospice. For nearly six years it has been controlling me, weakening me, and I have been losing me. It’s time to come back.
2) that this book is going to be terrifying to write – but I’m more familiar with fear than most, and I will do it. Hell – I’ve already begun. It is the greatest thing I can give. I lived a life that I couldn’t even imagine at the time and became who I wanted to be. I went (and continue on) a great journey, one that has taken me from the shining top of life to the depths of watching my own flesh decompose but I wasn’t willing to go I had to live and… and as I did what I swore I would do and danced out the door of the hospice, called a “miracle” by the nurses and nurse assistants who (understandably) pegged me for dead…
If I can help or inspire even one person with this book, that’s all I need.

Now, time to write a book.
We are ALL going to win.

1- GrassFish is a mid-year campout that has been going on for… I don’t know, 5-7 years? Born from a Burning Man
camp created by Lord Huckleberry & Opal Essence a long time ago named DustFish. By FAR, the best camp on the Playa.

 

 

 

 

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.

 

Only a small piece of it all…

I understand now how people in my position are pushed to become thieves.
Believe me, I’ve considered it – but almost never seriously.
Almost.
But it comes down to this: Money is such a minuscule piece of the whole.
Yesterday I deposited my disability check of $434.70 – what I am supposed to somehow survive on for the entire month after rent is paid. (The service takes out rent & hands me a check for the balance.) The next few days are usually the best- the “adulting” I feel in being able to pay bills, get food & treats for Ruby, order herbs I’m almost out of, do laundry – and look at all the amazing events happening, fantasizing about actually going out and seeing people.
And sometimes, I get to go to a cafe. I stand in line, look up at the board for something that sounds good but isn’t stupid expensive ($4.50 is my limit – until now an unconscious one) – and as I wait for the coffee to be made look for a small table, just for me & my laptop. Preferably somewhere in a corner, where I can look at people, not be noticed, and in sacred anonymity, write. 

The money goes quickly. I’m always behind in my PG&E bill, always short on herbs. I do my best to make sure I have the most important ones. I know exactly what happens when I run out and have the blood stains on my sheets & clothes to remind me.

This is why I ask for help. How I am able to tear down all that I have believed myself to be, push the weight of pride and the determination to do it myself aside, and find a shaking voice that is able to speak up.
I can’t describe how amazed and grateful I am that you’ve stuck with me for this long. You have not only helped me stay healthy physically, but *mentally* as well.

But this is where I have no choice but to ask for help again. I’ve been doing well and getting noticeably BETTER over the months with your support, and I simply can *not* get well without it. After bills & a small order of dog food & herbs, I now have .59 cents to last me for the ENTIRE month. PLEASE, help if you can – in any way.
Paypal – ksea@culturefluxmagazine.com.
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<longer version>
We CAN win this. I can not do it without you.
Paypal addy is ksea@culturefluxmagazine.com
It’s a terrifying & sickening vulnerability, as every time I ask for you to help prevent me from going back into the hospital again, you always have the option to say “no” – or to rip my heart to pieces, ignoring these words completely.
Looking out through my eyes, it’s hard not to see the absence of financial support the same as taking away emotional support as well – as since I almost never see any of you, and the only times you say anything to me are in the messages in Paypal or GoFundMe. It usually is all I ever see that shows you still care.
I know how pitiful that sounds and I hate it.

Your support extends FAR beyond only financial gifts, and each time it lessens the weight of this daily struggle. It lightens *my* spirit.
Paypal addy – ksea@cultureflumagaxine.com
~ ~ ~ ~ ~

After picking up the check & depositing it in my bank, I took Rubes to Civic Center so she could run around & we could play in the *gorgeous* sunny day (as much as my bruised back let me), then we went to Walgreen’s so I could pick up Epsom salts for my back & more Band-Aid’s. When I don’t have the proper herbs, my legs itch like hell & I scratch the paper-thin flesh off in parts. The band-aid’s help prevent infection a little…

Then home to pay as many bills as possible, order a couple weeks of the most important herbs (as well as dog food) – and that left me with just a little under $100 for the month for nutritious food for me, herbs to help itching (less important but still needed) and the always essential coconut water. Normal water doesn’t hydrate or process, making legs & abdomen bloat & swell.

Today Chuck was kind enough to pick me up at the hospital & we made stops to pick up liver & fruit at the cheap Mission groceria – but at that stop I checked my account balance.
Expecting to have around $60-$70 still, my heart sank when I saw that my total balance was $5.70, and $6 cash in pocket.

I had no choice to put all the good fruit back & keep only the liver, so I would have enough to get wet food for Rubes & a few liters of coconut water at Trader Joe’s to last 4 days – if I don’t drink as much as I should.

Okay – Im fighting to keep my eyes open, and losing. I’m frustrated, & going to sleep. PLEASE help in any way you can. This isn’t a frivolous request, & what you do when you support this fight is nothing less than help keep me out of the hospitals – and quite simply, keep the spirit of this warrior fighting to stay alive.

You guys are incredible. Please keep believing in me.

Love love love,
~ Casey

PS – PLEASE don’t hesitate to share, like, and keep bumping this around so it can be seen.
Thank you!