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.

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!

in time

There was once a time when I had all the time in the world.
I was indestructible, immune to all life could challenge me with. Stronger and understanding that it’s just a game.
Nothing has changed. Nothing but time.

Misunderstood and it’s you, us; not me who destroys what never will be/ I have a timeline.

So much heart unspoken in the hospital beds, I now find my voice – and scare you away in speaking it.
I don’t depend on time anymore. I say what I need to. I don’t speak anything short of…


Once, I had the luxury of saying nothing, in waiting,

only believing in time…

day in, day out…


Time & reality are thin for me here, in bed most the day and night to the point that they get blurred together; time is recorded by meals, and when they come daily to take my vital signs. The outside world becomes hazy, the days follow days follow… I forget that there are things that need to be done, things I want to do. Awake at night, sleep during the day – or something like that, right?

Does it matter? Not here. Most people have spent much more time than me in these walls, going around and around, living, and yes- dying. Natasha died here a few weeks ago, and nothing changed except the room was empty again. I still wish her well when I turn off the light, because I don’t think anyone else does. She was only here for three weeks – or somewhere around there.

Time.

I busy myself when I have the energy to be busy by reading, by taking silly shots of me with my camera… by trying to think of something to write. I have a notebook scattered with thoughts, pretty beginnings that will never find an end to their stories, so they will forever sit and wait to become something… maybe someday, maybe someday… but these days it seems like such an effort to write, at least until I start.

I mean hell, the laptop is at least two feet away, and I need to sit up, and… sheesh.

Admittedly, I have been watching much more television than I like to, but what else is there to do? By far my favorite station is the Food Network, and you better believe that I’m going to be cookin’ soon – somehow, someway, and yeah, you’re invited to eat – because who knows, it may be your kitchen. And a little of your money for the food.

One thing that has re-emerged in watching the shows is my insatiable lust, my uncontrollable desire, my desperate need for raw oysters, to the point of looking up the menu & prices on the Hog Island website. (((sigh)))

Okay, pretty much any good food (it’s fine for what it is here, & they do a good job most of the time – but by no means is it “great”. My eyes have, however, tasted the amazing things on the television in my mind – & that’s what I want.

Like a big ol’ spoiled brat, I WANT!

Maybe if I dress up in my busker outfit & head out to Union Square… “Scuse me, lady? Spare $60 for some oysters?”

It is, after all, the holidays, & I always did well at Union Square – while freezing my friggin ASS off, & the ass underneath that… at least this way I’ll be able to move around, and besides, I ordered a nice new cane (for pretty cheap – less than a good dinner) off of eBay – I mean hell, what’s the point in being a gimp if ya can’t use it to accessorize?

I really shouldn’t watch the Food Network.

 

Lunch time. Must be 12:30

and sadly, this was somewhat tiring… but perhaps I’m just out of practice.

 

And Now, Picture Time.