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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or in, I will. (Spittle)

And then there is life.

Life that I fought with my life for begged for because I didn’t do it entirely alone – they came expecting me to dies, to be able to say “I was there” and maybe the darkness in my heart I have let speak too loudly.

We invent and re-invent ourselves. You do.

I was the one who since 19 expected to die at any moment, get sick and say farewell to no one, Walk into a forest, into the Sea and have it done with.

It proposed a problem. At 19  the news came that I was dead that I had HIV that every

That every dream meant nothing, therefore I gave nothing to this life, my life, the thread cut short.

How does one live when…

I hated hearing him. A phone call that said I was dead and it made things simpler, I didn’t have to plan anymore but something went wrong and I kept not dying but with every breath I expected to, still do but not as much.

I;m tired, sleepy, weary and I will write more tpmorrrow –

Maybe.

Imagine living a life where you expect to die , KNOW you will get sick at any moment.

I didn’t hold couldn’t hold on to anything yet I kept going and against all I am still here still here and so fucking beautiful and confused and…

Through all my years, I know that by far is to exist without living. Even in a life that is nothing but pain, you still feel alive – and everything will pass…

And I, in pain or in ecstasy. Will continue.

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.

 

Ch-ch-ch-ch-ch-Changes

 

It’s time.

I drifted off to sleep last night with a hundred (or maybe 10) thoughts in my head of how weary of this life of thesamegoddamnedthing day after day, pretending to exist in the world around me with a head full of morphine, digging as deep as I can, past the haze & the hollowness just to feel all the things that nine years ago flowed with such purpose, vim, vigor and passion to the tips of my fingers, and from there it was a direct channel to my heart and all of the things that boiled inside.

I drifted off to sleep last night with ten (or maybe 5) thoughts rolling around in my head of how I had come to loathe this incessant fight for health, battling the swelling in my abdomen & legs every single day, the membrane-thin skin that tears like paper from the open sores caused by nothing more than scrubbing a bit too hard in the shower, the Fatigue, the Fatigue, the Fatigue.

And I woke up with the same conviction to change these things. Life has become nauseatingly uneventful, every day trying to battle the fatigue to conjure up the energy to create something new and, not being able to, feeling as if I’ve failed the day. That I’m not appreciating this life as I should, that I’m not fucking LIVING – and this needs to change.

By the end of the month I will have gone through the pure fucking hell of kicking Morphine. I need a little excitement in my life, and hoping I can race fast enough to the bathroom on legs that want to detach themselves from me & go other directions should be enough – at least for the time.

Then, more fun. Because I deserve it – and hell, this will be something *new*! I like new things, even if they’re used. Frequently especially if they’re used.

Sooooooo…

At my appointment with my Doctor on the 12th of this month, I’m going to open up talks – this time, for the *first* time, instigated by me instead of him, & more positive this time – of a liver transplant. He’s going to shit fucking rainbows. He’s been gently pressing me to get on the list for a transplant for years.

I have mixed feeling about the liver transplant. It seems like the easy way out, in a sense. Just take out the old one that’s killing me and put in a brand new shiny one… one that could easily go to someone else who needs it more. And I still believe that I can reverse my cirrhosis, do it myself… but there is also no way to determine if the herbs I’m taking are helping, as the test that would show that wouldn’t be covered by insurance unless there’s a good reason, and my guess is using herbs to fix what Western Medicine says can NOT be fixed wouldn’t be considered a good reason.

But it’s time. Time to change things, time to rip myself apart & put me together again – this time whole, with the pieces that have been left behind over the years found & fit & made to work again.
And I’m willing to take the easy way out – as long as it isn’t *too* easy.

It’s time.

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.