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.
 

 

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Through the Brambles

As the clocked clicked on, 12 hours, 24 and further and ticking up to the door of 36 hours, I thought that somehow, the herbs I’m taking specifically for easing the withdrawals were doing far more, far better than I had expected them to – that I ever *dreamed* they could do.

I began to feel only the most minor of miseries after the 24 hour mark – energy draining, my mood faltering and becoming less optimistic and focus slowly starting to disintegrate. I felt some of the pain in my calves reminding me that it’s still there, and in a strange way I found comfort in that; here was something I knew.

But where was the rest?

Then, 32 hours after my last dose & after watching downloaded movies to the point where I couldn’t tolerate it anymore, I laid down in bed, propped my back slightly against the pillows & did my best to read more of “Look Homeward, Angel” by Thomas Wolfe. I just finished another book that morning and now desperately needed something to occupy my mind. I was tired, knew I should probably try to sleep, but the signs were coming on stronger then & felt I needed a place for my  thoughts to go and calm down a bit before sleep was even attempted.

Not being able to enjoy reading with a mind that wasn’t really seeing the words as any more than black scratches on paper, I gave in, got out of bed, stood up and did dome minor stretches of my legs, torso & arms, poured more coconut water into my thermos to do my best to stay hydrated. I brushed the dog hair off my feet, gave Rubes a hug and got under the thin top cover above the comforter, making certain that all the pillows were placed perfectly for the best comfort available, which under any other circumstances would have gently carried me away to dreamland within a matter of minutes…

This time, however, I wasn’t so fortunate. This time, I’m paying. a debt, and sleep is only *one* of the things I must give to the collector.

Not three minutes after I breathed the deep & final ‘sigh’ and waited for my mind to drift off into it’s odd ideas & dreams, my right leg twitched violently bringing my knee in the direction of my chest. Not to be outdone, both of my shoulders shot up in a convulsive manner – as if they were tying to say “Hey, don’t look at me – I don’t know what the hell that was”.

I’ve been here before.

I find it humorous, those that post “you can do it!” on my Facebook page. Humorous, but appreciated. They don’t know what I’ve been through already.

They don’t know of the pain that went on for months in the hospice, pain that even the morphine couldn’t touch. They don’t know that I wondered if the pain would ever even cease before I died, or every day would be like this until the end. They have no idea how many times I thought of taking away the pain myself – taking away everything.

I’ve always kept a stash of 500mg or more of morphine, secreted away but close enough so that I didn’t have to get out of bed if I couldn’t.

They don’t know how many times those pills sat in my hand as I stared at their round & oval shapes, trying to justify taking them, trying harder not to.

No, they don’t know any of that because I didn’t tell them. It wasn’t their business, and the last thing I wanted was a bunch of common bullshit attempts to cheer me up. Certainly not then, and most certainly not them… or most of them, at least.

But I digress.

This won’t be easy by any stretch of the imagination, but it will end. Like cutting away and climbing through blackberry brambles that have grown over a path, getting torn, flesh getting ripped & stained with blood & juice but persevering, knowing that once I make it through this dark thicket, leaving the parts of body & mind I don’t need anymore draped & dripping on the thorns…

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Once I make it through, I’ll find a clearing of indescribably clear beauty –
And I’ll find me, waiting, and smiling.
9-23-24-16

falling apart to fall back together

Four days, and as the clock relentlessly ticks down I count every hour with a strange combination of sheer terror and wary excitement, my emotions swinging from one to the other like spectators heads in a high-energy tennis match.

Two days ago I picked up my last Morphine prescription, and as the bottles were handed to me I looked at them with a feeling of triumph. This is it.

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I mostly know what to expect. I’ve done this before, 28 years ago, and again a bit more recently when my motorhome was towed with all of my meds inside. It’s not what I remember that frightens me the most, though those memories still clutch at my mind and sink their diseased claws in when I try to make myself believe that I’m strong enough.

No. It’s the things I know I don’t remember that frighten me the most. The whispered shadows of the nightmare, the parts that my mind gratefully thrust out of my memory in an act of self preservation. The small things that are lost in the fog.

The Fog.

It’s surrounded me for over nine years, from when I finally gave in to my doctor’s concern & offer of something to help with the pain that twisted my face, carving each line on it deeper like a Halloween mask of Edvard Munch’s “The Scream”… the only difference being that my screams, I kept inside. At least when I could.

With the first pill they finally went away, and I was so grateful I almost cried, even through the personal guilt and failure of feeling like I wasn’t strong enough, that I had finally lost to what for so many years I had conquered when necessary, not even taking so much as a Tylenol-3 or even an aspirin when I broke my leg skateboarding, tore apart the tendons & dislocated my shoulder when my van rolled 5 times across I-5, and hundreds of other minor bangs, bashes & aches. Those, I knew, would all pass, and all I had to do was hold strong and stand my ground. This time though, instead of fading, getting better & finally going away, the pain only increased. With each day, with each strip of flesh on my legs that caught under my fingernails while the poisoned fluid pooled and the unbearable itching multiplied, the pain grew and my conviction deteriorated…

There were, of course, many, many  times I needed them, so if I chose not to take that first pill then, it was just a matter of time before I did. When the cirrhosis decided to go to town on my body, it’s two favorite places to destroy were my legs and abdomen – and it was like a category-6 tornado in a trailer park. From the swelling to the point where I couldn’t bend my legs & had to cut the legs of my pajamas to be able to squeeze into them to the itching so horrid from the poisons my liver couldn’t process I cut myself open with my own fingernails, to the pressure from the swelling in my abdomen & legs so severe the fluid actually started pushing out of the skin on my calves and pushing my intestines out of my navel, to the pain from the occasional infections that slipped right by even the highest doses of morphine – I was certainly grateful for it at times…

 
…but as the months & years continued and the pain slowly subsided, when I began to wonder and doubt how necessary the morphine was anymore, I knew I was screwed. Sure, there was still the mild constant pain from my calves that never fully healed or grew back more than the thinnest layer of protective skin, and there was still the occasional breakthrough pain in my abdomen – but nothing I thought – that I think – that I can’t deal with. Nothing so bad that my body’s own pain killer can’t handle it. Nothing so severe that the mind/body & quantum healing practices I discovered and used in the hospice and the surprising strength I found in my mind can’t handle it.

There’s only one small problem. My brain has completely shut down all of it’s own natural pain killers. Feeling unloved & un-needed, the receptors that normally block everything bad have gone on to other tasks where they feel more appreciated. I wish I knew more of the science of it – it’s not entirely endorphins or dopamine but a combination of the two along with some other things. That’s what I kind of know. I know the human body is fucking amazing. We all should kiss ourselves every day and thank it for all it does for us.

I know without any question, without the slightest hint of doubt at all – what I know intimately – is that the human body is in constant pain. Anyone who hasn’t experienced the feeling of not having any help at all from your body to dull pain cannot even come close to imagining what it’s like when you feel EVERYTHING.
I don’t feel as if I can explain it well enough right now, nor do I want to.

But I want my body back. I want my mind back, and all the things working as they should  again. I want to feel alive again- with all the pain, passion, love, joy, excitement & fear.

So here we are, nine years later. And I’m fucking done. Things need to change and that is the most obvious one. The feeling of the morphine sticking felt thorns of stupid into my brain is over – or will be soon. First, I need to pay for those lost years, and I know I will – dearly – but every second will be worth it. Nine years of mental fog, nine years of suppressed emotion – the passion, love, excitement, joy, happiness and everything else a person feels on a daily basis has all been muffled, like my mind & heart trying to speak to me through a sealed door.
(Hm. That’s an interesting mental picture.)

On September 21st I will take my final dose of morphine, hopefully for the rest of my life. On the 22nd I’ll begin to feel the withdrawals. They don’t come at once, of course – they gradually build, if I remember correctly, over about three days – but it’s like sticking your hand into a put of 75 degree (Celsius) water. It’s not boiling yet, but it sure as hell isn’t pleasant.
This ought to be interesting.

But WAIT! That’s not all!

To make things completely absurd, I’ve also decided to quit smoking at the exact same time. I mean hell – If I’m going to change my life, I may as well just jump right in with both feet. Get rid of all the things that I’ve been wanting to quit.
In a way I suspect that it will give me something to laugh at myself about – like when you stub your toe and hop around like a fool, feeling like a dumb-ass and laughing through the pain – except in this example I’ll be writhing in pain, wanting a cigarette, and laughing at myself because only someone who is a complete and utter fool would consider quitting both morphine and cigarettes at the same time, and I’ve always held the self-imposed title of “Fool” quite proudly at times such as this.

But there’s something else which is more of an experiment than anything: I have this notion that kicking morphine AND cigarettes at the same time will somehow drive the point that I am now (or will be horribly soon) a non-smoker home a bit harder, because I know smoking is going to be the hardest one in the long run – and I’m in this game to win. So far, I haven’t died 100% of the time, so I’m doing pretty good I think.

When the door is opened, when the fog clears and for the first time in nine years there is no drugged buffer repressing all of the beautiful and horrible things inside of me, I suspect it will be one hell of a ride as I become accustomed to feeling *everything* again – I mean hell, in preparation I’ve cut down the regular dose of 60 – 90mg through the day to one 30mg pill in the morning, and was nearly bawling during parts of the movie “Pete’s Dragon” I watched earlier tonight.

As I said, it’s going to be one hell of a ride. It should make for some interesting blog posts as well.

I should probably apologize in advance to anyone I offend, but honestly – if you get offended, it’s your trip, not mine. Fasten your seat-belts, put on a couple extra layers of skin – and Lighten Up. Things are likely going to get a bit crazy.

Wish me luck.

And please – I’d like it if you commented, if you wish. It will help me not feel so alone.
Comments & ‘likes’ left on my WordPress blog are MUCH more appreciated than those on Facebook, as well.

Four days until I begin to rip myself apart. I’m excited to see what the rebuild will look like.

And I need to figure out whaat kind of art project I’m going to make out of these:
(
I haven’t counted them, but I suspect I have about forty that I’ve saved over the past couple years = when I remembered to.)

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Empty gestures

 

The wheels begin to spin again and decisions are made. Life turns from existence to living.

Just a couple decisions – the morphine and the shiny new liver have sparked an interest in living that I haven’t felt for foar too long. Even with the Kickstarter campaign, I knew that it was just a unsurmountable dream but it was a good dream and I fought like hell but here’s the secret:

A few weeks before I launched, I had already started making plans in my mind for someone to take care of Ruby. I had/have a shitload of morphine saved up, and it would have been an easy death – and with the failure of the campaign (as much as I didn’t want it to) maybe the people I call chosen in my life would finally understand. Understand how much that meant to me. MEANS to me.

But life goes on, and I needed a new one – and the only way I could figure out how to make the changes I needed to were through immense pain. ARE through that pain.

I have things I need to do so I can believe that this life means something again, and those things will happen.

Interesting that just the thought of a drastic change makes me smile more, makes me want to live. More.

I still have a lot to do – and one thing is accepting that those whosay they love me, adore me, will support me – are and have been only speaking with the money I needed & still need for the herbs that keep me alive.

They were wonderful, and I am grateful for what they did to help me – but I see much more clear than most give me credit for, and while they offered cash, I still wasn’t worth their time.

All I wanted was some face to face time over a meal or even coffee – and with very few exceptions, they were never there for that – as much as I begged,  pleaded, and trusted.

Yeah, you’re family alright – the same kind of family that raised me, but never visited me in the hospice. The same kind of family that talked about love but never showed it…

I think of a friend who blathered on about how much more he wishes he could have done, but when the most important part of my life – the campaign – came aboutl he was silent, asn didn’t donate a dollar. This is a ,am who saved my life, but he was nowhere around when this new life needed to be saved… and of course there are others…

Now it is entirely me. I will not beg for the herbs that keep me alive anymore, and deal with it because I need to. I will never ask t be kept alive by your hand again.

Thankfully, there are three people who help without asking and those I appreciate and trust. I *might* be able to make it – or I may not, and die while waiting for a liver transplant… nut I will not ask for your financial help again – and I know better now than to simply sit across a cup of coffee with you.

You have shown me who you are.

Not long ago I was reminded what a true friend is.

The wheels spin, and changes will be made. I am not alone anymore.

I’’m hoping that the next post wpm

T ne so much of the rant that this grew into = but I son’t hide anything. Those who read deserve all honesty.

 

A little Everything

Another birthday quietly comes & goes with the slight disbelief & perhaps even small discontent that I made it another year.

I wake up late this morning, make my coffee, do the morning stretches to try to regain a scrap of the flexibility that, along with my strength, was eaten away during the 18 months that I spent in a hospital bed, and after I adjust the pillows climb back into bed, set the laptop on my lap & start to scratch words. I’ve found the bed is best – at least for the swelling in my legs. Keeps it down.

A conversation yesterday with a wonderful old friend & former lover about everything under our suns, and ending with tentative plans for a cross country trip in Spring – renting an RV and taking a few weeks to cross the country to her home in upstate New York. Likely plans. Almost definite plans.
I need to do something. Something that *means* something. The Kickstarter for my book crushed me as it fell to nothing but rubble of hopes, dreams & the plans I had which would have changed everything in my life, given me a purpose, a value.

I wonder why my life, my happiness depends so incredibly much on doing something, creating something, helping someone – I know that there are many who are content to live their lives in a mundane existence, and that’s all they seem to need. They seem to be happy – but that’s not me.  That’s not me.

I need to taste everything, experience the deepest pain and joy as I can, and truly feel PASSION, feel alive in this world, feel like I’m more than just another inconsequential pawn.
I need to breathe the fervent, blood red breath of life deep inside me, feel it fill my lungs, my heart, my soul, and match it with my own.
I need to swim to the deepest dark depths of the sea and feel at home there with creatures that understand that all I want to do is learn. Where are my fucking gills?

Where have I gone? Where is the music that I once danced to, the fevered rhythm of life? Have I fallen prey to my own sickness? Have I given up?

I can’t. I want to. I can’t. I’m tired. I can’t. I can’t.

Sometimes I think some of us live only to beat the odds. To be able to say “This is what I know.” And, just maybe, help someone else. Help them open their eyes, to see a little bit more beauty, to believe a little bit more in their dreams. To see how perfect we can at least make the world around us – or at the very least make it better.

I am not more courageous, not any more special than anyone else. I live in the same world.

I’ve just seen more of it than most – and because of that, in spite of that – I’m willing to keep fighting to make it a little bit better.

Through the Fear

There are times as the moment gets closer where the courage to go on vanishes.
I try to find it – on the pages of books I’ve marked, in things I’ve written before, in memories of who I was and what I had inside when I was laying in bed dying.

Sometimes I find it. Sometimes not.

Yet still I go on, even though I know full well what’s at stake. What the cost will be if I fail.
I go on because I can’t live like this anymore, with the only thing keeping me alive being the struggle to stay alive. The magick and enthusiasm I once had for that is long gone, and has now become little more than a chore wrapped in futile redundancy. If trying to stay alive is the only reason to live, where do I find the inspiration to go on?

I know what the answer is, and that’s why I’m terrified. The book, my book, is what I need to break me out of this prison. What I was meant to do, perhaps even why, against the most insane odds, I was kept alive.

I can help people. Inspire them, entertain them, make them laugh – maybe even cry. I might even be able to change their life, and in doing so, change mine, back to a life filled with purpose, filled with value. Filling my heart again.

And that is why I’m afraid. There’s always the chance that my Kickstarter campaign won’t reach its goal, and if it doesn’t – nothing happens. I hang my head & try to go on, not having what is needed to get the book done or published, instead going back to my main job being begging for money for the herbs I need… but I don’t think even the best of herbs will help without the enthusiasm to keep living.

I know I shouldn’t be writing this. I need to be cheerful, upbeat, inviting – not depressing – but this is me, and many years ago I promised that I wouldn’t sugar-coat anything I write, I won’t bend to try accommodate the increasingly fragile, absurdly easily offended people whose “individual” thoughts are only what everyone else is saying on Facebook.

Fuck that.

This is going to happen. I will succeed. I’ve never given up on a dream before…

and I’m not going to start now.

I will find the courage, or if I don’t – I’ll keep going without it. Life is far too short & valuable to forsake the person I am supposed to be – the person I lost in the 6 year fight to stay alive.

I’m tired of fighting. It’s time to instead let this happen, and again know that whatever happens is exactly what should happen.

It’s time to trust the Universe again.

We MUST keep moving forward.

Too Far to Fail Now

Twelve years ago I jumped off a cliff & gave up everything to follow my dreams. I lost my apartment, my car, slept on couches & went hungry – but refused to go back. (As long as my dog was fed!)
Then, my wings unfolded.

I did things. I had incredible adventures. I helped people overcome their self-doubt & perform in front of hundreds of people. Volunteered for Katrina refugees, was one of the first street performers in New Orleans after The Storm. Created an award-winning magazine, produced events, did more things. Met amazing people.
Fell in love.

Then my body decided to die. My unrealized dreams & I disagreed with it, & The Battle was on… and now I’m writing a book about ALL of it.

This book is going to rock your world. Hopefully, it’s going to rock THE world.

It won’t likely be like anything you’ve read before. It’s an authentic, raw, funny, honest, moving and inspiring story of my past twelve years, and how I turned a mundane, unremarkable existence into a beautiful, useful & helpful life. A life that I am finally proud of…

This book is about remembering how to dance with life. About not letting life happen to you anymore, but making it happen foryou. It’s for the dreamers, the believers, those that thrive on the hope of fulfilling the potential we’ve all been blessed with.
And it’s about love.

I just need to get it out to the world.

I’ve come too far to fail.

My Kickstarter launches in 13 DAYS. July 6th, Wednesday.
I’ve crunched numbers, & I fear that I don’t have contact with enough people to succeed in reaching my goal.

I’m going to need your help – not only to change my life, but most importantly inspire others to live theirs.

LET’S CHANGE THE WORLD!

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LOVE YOU.