Somehow, 50

I felt the blood drain from my face, my mind. It’s a strange feeling, like submersing your head in a pool of nearly frozen water, but not as cold.

“What?”

Now I was finding it difficult to stand. There wasn’t anything to sit on so I leaned against the racks of VHS videos behind the counter.
The voice on the other end of the line repeated what it said, a little slower, each point a sentence like he was trying to teach a five year old quantum physics.

“This is Dr. Thomas. Your test results have come back. You have tested positive. For the HIV antibody. The virus that causes AIDS.

  1. I was 19 years old, and a single two minute call was all it took rip away everything I thought I knew.

I had run away from home at 17 for the third and final time, and after living with my meth dealer for a while, *not* sleeping in his unfurnished living room on the floor, I decided to leave, go somewhere besides San Diego. I didn’t know a single person in the Bay Area. It seemed like good a place as any to try and figure out who I was.

When I was finally able to think, I realized that I must have been tested on a recent trip to visit my adopted parents. They asked if I wanted a physical while I was there, and I agreed. I wanted to show them I was fine, healthy. That there was no reason to worry about me. That I didn’t need them. I figured out that they had also requested an HIV test from the doctor, and getting my approval wasn’t important. The call on that day was kind of a shock.

I had never used needles, had slept with maybe five men. I was exempt from AIDS, I was mostly straight and I was safe. I guess all it took was one of those men being positive, and everything working just right to infect me. Talk about rotten luck.

But that didn’t matter now. Nothing mattered. Across the Bay the City was dying, the plague was killing people and no one had any answers. I’d heard the treatments they had weren’t that much better than the disease.
That’s all I knew. That’s all I chose to know.

I figured I had about 18 months, maybe two years left to live if I was lucky, but much of that time would be spent in horrible pain, my body shutting down, my own shit and blood and fluids pouring out of me. All the sudden my self-imposed rule of never using needles for recreational drugs and never using heroin went to shit. When I started to get sick, I would handle it my own way. I wasn’t going to be a burden on anyone – just slide away and disappear.

Time passed. A year, two, five, and the sickness never came. Still, bordering the line between conscious and subconscious, I kept waiting for the day everything turned around. I knew it was coming.

As much as I wanted to go back to school, to learn something I could use, I couldn’t commit to the time. I didn’t have a future.

 

 

I destroyed the best relationships & deepest loves I have ever known, selfishly afraid to ever force anyone to feel like they needed to be loyal, faithful, as they stood by, helpless, watching me die. For the same reason I never allowed myself to have what I perhaps wanted more than anything in life – a child.

I took each day as it came, tried to make the best out of it. I studied myself and my beliefs, did all I could to learn about me and what life was. I taught myself to see the beauty in everything, every day. I tried to help, I learned from others, I read & continue to read feverishly, so at least I might have some wisdom, some inspiration, something to offer another. Maybe something clever & profound to say in my final breath. Only up until the past 15 or so years, every moment of my life has been spent expecting to die. It’s the only thing I’ve known.

It sure did fuck up my credit score.

Now, somehow, I’m only a few weeks away from 50 years old, and wondering how it is that I got here. I’ve spent years looking for an answer as to why. Why, of all people, me?

I’ve only been able to come up with one answer that makes any sense at all.
 

 

Life, Death, Dogs. A Rooftop Contemplation

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

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

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

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

I know better now. I understand death better now.

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

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

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

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

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

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.

 

Another Day

He looks at the blank page, the cursor blinking more & more impatiently it seems as it sits there, unmoving, unwanted, unused, just hoping for someone to come along and remind it what it is there for.

He thinks a bit, feels a strange yet familiar empathy with the cursor, as if it were alive.
As if he was.

He knows that this is the one single thing that he can go to when he feels this way; when he’s so weary of the daily fight to live that over & done with sounds so inviting. What would it matter if he just let go?
What would it matter if he just stopped fighting?

The days have become harder. The support that was there isn’t anymore, and he can’t get what he needs to live. It wasn’t so much the money though without it nothing else would matter and there would be nothing left for *him* to give.,
but with every dollar came just a glimmer of light back into his heart. The shine from every gift of gold stopped by his spirit and there, it took hold.

Not afraid of death, the greatest terror is the weeks that would lead up to it – again watching his body shut down, smelling his own flesh rotting away… but he’s planned for this. Bottles of Morphine in his drawers & hidden away in tight containers, and half of any one would do the trick. Hell, he probably even has enough in the pill thing on his keychain to easily step off this train…

But no. This is just fantasy, something that needs to be written out from time to time to scrub this poison from his mind and go on with the day to day to day, and maybe just maybe, today…

everything will be, at the very least, just okay.

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!”

SnapShot(3)

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.

 

consequences

In the past week alone, I’ve heard of three separate people who have recently passed from Hep-C complications. Without you, I would have been one of them four years ago. That doesn’t mean, however, that I’m in the clear. It’s still a daily battle, closely monitoring everything about my body, doing special exercises, tending to wounds and doing what I need to to keep from getting sick again.

I don’t just “get sick”. If I neglect to do anything & my health goes south, I end up in the hospital, to face an even harder fight if I get out.

But I also need to think of the consequences. The swollen legs & splitting skin, the distended abdomen, the crippling pain – you think just the thought of that would be enough for me to push aside my fear that you’ll end up despising me, or at the very worst, ignoring me. Scorning me, my words…

 

IMG_0533 SnapShot(3)

Every single day I fight like hell to never go back to this...

Every single day I fight like hell to never go back to this…

But your financial help is the ONLY way that I can get the various herbs, foods, and other things I need to avoid being hospitalized and fighting to stay alive. Especially because right now, thanks to you, I AM getting better, and feeling more of the person I was before all of this… but I’m out of money, and a few days away from being out of some of the herbs I need.

Because I was afraid of what you might think of me, I got myself into a somewhat terrifying bind.

There is no other option I have, and as much as I loathe having to keep doing it – I’m the guy who goes through complete hell if, like last time, I don’t try every option I can think of, and there aren’t too many.

Therefore I ask again, and will until we either have won the fight, or I end up in the hospital again, wondering if just returning to the same fight is worth it.

And thank you, for everything. With all of my heart, with all of my hope & spirit, thank you. 

I love you.

~ Casey


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!