Alone in the Past

My toes hang over the precipice as I stare down into the void, each year hoping that this time it might be different, that I won’t fall into that vast chasm of loneliness in my heart, that this time, maybe, I’ll walk home feeling less alone than when I walked there. Maybe I’ll break through my shyness and meet a woman I might eventually find love in, maybe I’ll meet a stranger and through good conversation see the promise of a true friend.

This year, maybe I’ll find my way out of the shadows.

In the green room we again say our rushed hello’s and how are you’s as they all get ready for the night – the majority of the people living less than ten miles away, yet still I only see at most a few times a year, and then only at events. Again the questions invade my mind, wondering who I am to them, and who they are to me.

Though in conversation I would call many of them friends just for ease of description, I hold that title with a certain reverence – and with the exception of a scant few I wonder and doubt if it holds true any longer. Perhaps once upon a time it did, but now, these days, I feel as if I am nothing more than an apparition from the past, chained to their present and still trying to belong in a place I don’t anymore.

Each year I walk out my door with the hope that maybe this time, it will be different – but each year I walk home, again alone, again feeling lonelier than I was on my way there.

There was a time when I changed my life completely around somewhat frequently, a time where I earned and lived my chosen name of Flux – but that person was lost somewhere in the eighteen months in hospice and years after, teaching myself to walk again and rebuilding the atrophied muscle. All I was anymore was the guy who fought death and won.

Now it’s time to be someone different. It’s time to change. Time to let go of the past and who I was, and become, again, someone new. Something new to be known for – and possibly, be remembered for.

It’s time to step back from the edge of this oppressive loneliness, meet new people, and in the process earn my name again, and again make my dreams into reality.

After all – that’s what I’m good at.

Advertisement

coming true

This timing isn’t working. All I can do when I sit down to write in the morning is think about how quickly I can get it done. There are so many stories I want to write, so much life I’ve lived, but they don’t fit neatly into a few small paragraphs. Into a small pocket of time. There is so much more I need to be doing, and so much more time than I had intended to have this ready by has already passed. just a few more things and every bit of focus I can dredge up to get them done before I’m able to take my art and life to a place that has only been a vague dream with no knowledge of how to get there – like the whisper of a pirate’s buried treasure with no map of how to get there.
At least, up until now.

Suddenly this lifelong glassy-eyed, “wouldn’t it be nice if someday” dream has an incredibly good chance of  becoming real… and I’m having an insanely difficult time believing it. It’s as if David Bowie called you out of the blue to explain that his death was just a hoax, and not to intrude but he would love it if you could find a nice two bedroom apartment where you & he could live for a while, and just live quiet lives hanging out, chatting over pints at local dive bars on the nights when you two weren’t at the studio while he cut another album – and by the way, do sing or play an instrument?

Okay, so that may be a bit unbalanced on the level of disbelief in the possibility of it happening, but you get the picture. The life I’ve considered nearly impossible to ever be mine is now so close to becoming reality that I’m absolutely terrified. More than finding my birth mother, more than dying. This is being able to do what I want, to have the freedom to go anywhere, to simply treat a friend to a nice dinner on a whim as we walk past an interesting looking restaurant – I can’t even remember how many years it’s been since I’ve been able to do something as simple as that…
and to be able to help. Having a car when someone needs a ride or to move, money if they need that, donations to animal shelters & sanctuaries, and eventually even a yard large enough for Rubes to run around & plan in – with her new friends.

I see the steps, have carefully thought about how it’s going to grow, and am ready as I can be for the inevitable challenges along the way.
I’ve learned quite a bit about how to work through adversity over this life I’ve lived.
Maybe it – the good and bad – maybe all that I’ve lived through has been preparation for this new adventure. Maybe it has all been trying to teach me not to be afraid, that one way or another, it will all work out – just like it always has.

All I need to do is get my ass in gear & get the things I need to get done, done – and maybe, come this Friday – four days from now – this impossible dream will get its first taste of reality as I receive the first wholesale order for my jewelry.

Either that, or David Bowie will call.

Saying goodbye to my little friend

It’s always there, reminding me. Reminding me that I’m sick regardless of how well I may feel, reminding me that there’s something wrong, something that would never let me believe, even for a moment, that just like nearly everyone else I could relax.

Every time I looked in a mirror it made certain I wouldn’t forget.This monstrosity. This hideous thing sticking out of my abdomen.

Every single time I saw a woman that enticed me – a playful look in her eyes, a laughter that sounded like music, the language in her body and a beckoning gaze  inviting me to approach, I would begin to smile inside with the hope of putting an end to this everlasting loneliness – then turn away.

What if we ended up liking each other? What if we laughed at the same absurd things, our eyes sparkled a bit brighter as we looked at the other… what if one night we went home together, and it came time to take off my shirt?

Of course I would have warned her, told her about it, but hearing and seeing are two entirely different things. When she actually saw my umbilical hernia, that I have a tennis-ball sized mound of flesh & intestines sticking out of my belly that looks frighteningly similar to a scrotum, what then?

For years I’ve been destroying any possibility before it began. For years I’ve been pleasing with the surgeon to cut me open and fix it regardless of the consequences, knowing that they couldn’t be worse than what I’ve been putting myself through.
Knowing that they couldn’t be worse than facing the near-guarantee of a lifetime without anyone special to share it with, knowing I would never get close enough to let myself fall in love again. Knowing that this loneliness would forever be a part of me…

Now, over six years of begging & pleading, I am 18 days away from the surgery I’ve wanted all this time.

He finally agreed.

Sure, it’s risky as hell for me, with a roughly 30% chance something may go wrong and I’ll die, but weighing the risks against spending the rest of my life afraid to even approach & flirt with a woman? I’ll take my chances. I really fucking miss being in love.

Eighteen days.

Shit. I need to try to remember how to actually talk, flirt – and date  again!

Maybe this surgery isn’t the best idea after all.
(Just kidding – FUCK YEEAAH!)

making it all true again

Saturday morning. Returning from the dirt & grass “back yard” of my apartment building where I took Ruby down to do what she needed, I tilted my head back and closed my eyes as I let the sunshine & cool breeze caress my face, thinking of nothing as well as I could but instead thinking more of what’s to come in my life. If I let it. I get wrapped up in the past, the life of a young man that I created & was so deeply in love with, and… and I miss him.

I wonder where the person I was has gone, or if he’s gone at all. The memories of the magic come flooding back & wash over me as they so frequently do, when I would allow nothing to stand in my way & had the courage & motivation, when I knew that everything was possible and proved it to myself.

What has changed? Where does this fear come from? Is it even real, or just an excuse I tell myself in order to remain where I am, and gods, why the fuck would I want to do that? It’s known, but not comfortable. Familiar, but so is the insanity of a life where I didn’t know what would happen from day to day, sometimes – often – not even knowing where I would sleep. What has changed? Where did that young man, full of dreams and excitement for the unknown go?

Perhaps I’ve become jaded. Not to life and its magic, but to people. I’ve known the ones who are called “friends” for far too long now, and it’s time for new ones – ones who challenge me, who I look up to and who look to me when they are uncertain about things. People I respect & who respect me.
It’s interesting. The friends I made when I was travelling, wandering from place to place, city to city, and meeting people at random where I went – even when only met briefly, those are the people who are still strongest in my heart, who have earned a place and love there that will never fade.

I don’t want to be here anymore. I don’t want to be who I’ve become, and it is weighing heavily enough on my soul to change my life into who I can be. I’m doing something I love – creating art that I put my heart into, making people happy, and it is a gift that can change my life into the life I’ve always dreamed of… so it’s time to quit whining, quit wondering what happened to the broke vagabond whose adventure & excitement was simply trying to survive & eat, and chip away at the stone until I find the life that has always been hidden inside. There is a freedom waiting for me, just on the other side of these dreams…

The thing is, my biggest obstacle is that in order to become who I want to be, I need to get past the idea that the greatest adventures I’ve had so far have come from being poor and needing to be incredibly creative just to eat. Now, it’s time for me to turn that creativity into being… rich. Hells, even the word sounds strange, almost dirty, when I admit that’s what I want to be…

But I need to help others, and in order to do that, I need to help myself.

There are few things that light up my heart like bringing joy to others, and the only way to do that on the level I want to is to take care of my SELF financially, and to take this business of my art as far as it will go. I can already see how I can, already have plans, and it’s more possible than anything I’ve ever done in my life before.

It’s time to start making a whole new level of dreams come true. After all, this is what I fought so hard to stay alive for, what I’ve always wanted – and this life, right now, the only chance I have.

I’ve created an entirely new me before, and that brought more amazing things into my life – and more amazing people – than I ever would have dreamed being possible.
It’s time, now, to re-create myself again – to rid myself of what I don’t want to be & become, again, the person – the Warrior – who makes his dreams come true.

Still somewhere inside.

I constructed a monotone voice, did my best to empty my heart. As I waited, I practiced. Tried to center. This time he wouldn’t get me. I wouldn’t let myself go. This time I wouldn’t.
I thought I was prepared. Hell, shutting off was the first thing I had ever learned. I was a quiet baby, they were worried I was “slow” because I didn’t cry. I know this game, written into my heart when they took me from her arms after only 15 minutes with my Mother… but that’s not what this is about.

A serious, somewhat grim look on his face as he comes in. I’m somewhat surprised he doesn’t even acknowledge being three hours late, but easily let it go. Running through my head is that this is the single person that can change my life and for now every thought swims around what I can do to convince him to do this surgery, to make me whole again, to stop the pain both outside and in my heart.

On the table he looks at it again, prying, playing, doing what I do al the time – tucking my intestines back inside of me and wishing they stayed there. It doesn’t work, I know without even looking.

Sitting back up we start talking, a subtle but sincere look of concern on his face as he again explains all that could go wrong and why. I notice that this time there are more reasons. Maybe he prepared.

“Surgeons try not to be executioners.”

“But I’m already dead. This is the one thing that could give me my life back.”

At least, that’s what I tried to say. In the first few words out of my mouth I felt my heart claw its way into my throat, blocking all coherent speech. Everything I wanted to say. I pause for a few seconds, try to talk again. Try to say what I’m feeling. I am frustrated, dismayed that I can’t control myself. Surprised that I hid this pain so fucking well that even I didn’t realize how deep it went, how much stronger than me it is.

I kept trying to talk, to say something that didn’t make me sound completely irrational & controlled by emotion. I kept failing.

But something must have worked. He told me that he would check with a colleague of his at UCSF, a hospital that is one of the best transplant hospitals in the country & much better equipped to perform the surgery. See what he says.

“I’m not saying no.”

Twice he said this, but all I could hear was how far away it was from “yes”.

 

As much as I had hoped to be able to talk, to argue my point rationally, and as much as I had gone over every point in my mind that I needed to bring up to him, I knew even if everything went perfectly he would still see me more as a series of tests and paperwork than as someone who depends on this surgery to get his life back. It’s through no fault of his. We have only met briefly three times, and his job is to judge by the evidence, not emotion.

Knowing this, I woke early yesterday to try to write something that might make him understand the person behind all the tests that scream to his rational mind that I have less than a 1 in 4 chance of living through this – that I am far more than a statistic.

This, along with some words from friends that follow, is what I wrote:

Dear Dr. Mackersie,
Since even before I made another appointment with you last month, I’ve been trying to figure out what to say when we met again. Though I’ve thought of many things, I still have no idea what will actually come out of my mouth. I’ve never felt talking has been one of my strengths – but writing has, so today I give you this in addition to all the emotional blather that I’ll try to say.

When I was only 17 years old, I received a call telling me that I was HIV+. As I’m sure you remember this was at a time when nearly all people who contracted the virus were dead within an average of 18 months.

From that moment on, I lived my life expecting to get sick and die at any time, knowing that it was more than likely that I would. I figured that I would enjoy life while I could, and any future I thought of having – any goals, dreams, school, or anything that would take longer than a year was out of the question. I erased any hope of one day becoming something more, having no choice that I saw but to find a thin contentment in floating from job to job, only working to be able to eat & enjoy whatever time I had left. I eventually made my peace with dying very young.

After over a decade had passed without any health issues, I realized something was wrong – but it seemed too late to do anything about it. It’s difficult to simply change the thinking that you will die any day into understanding the possibility that you might live.

Fast forward to 2004. I was laid off from a job, and at that point decided to find out what would happen if I actually lived a life that I wanted – a life that might mean something, a life that for the first time might have value – not only to me, but perhaps others as well.

It wasn’t easy by any stretch of the imagination, but I refused to give up – and eventually found myself not only loving the life I had fought so hard to create, but for the first time ever, truly loving myself.

Had I not experienced that incredible life, I have little doubt that I would have given up like so many other people in the hospice. There were two primary things that kept me fighting so hard: finding my Birth Mother who I had been searching for most of my adult life, and returning to become the person I loved again – performing, sharing myself, inspiring & making others happy. There is no greater gift I had ever been able to give, and it is, literally, what I lived for.

The way you are able to improve people’s lives with your hands & knowledge, that’s what I did with my dreams, creativity, & body.
Now imagine if (gods forbid) there was an accident, and your hands were hurt. There was an experimental operation that you could have performed, but it was risky – it would either restore them so they were of use again & you could continue helping & saving others, or they would be completely dead & useless at the end of your arms.
What would you choose to do?

Many years ago I made complete peace inside my heart with death, and that holds strong to this day. That, however, was a physical death. I didn’t count on a situation that would eventually blacken my spirit & heart, and over the past few years, gradually but steadily, that is what has been happening to me. The immense & beautiful love for life that I had is slowly being extinguished, as I can’t live the life I fell in love with anymore – or be that person.

A couple days ago I asked if there was anyone willing to write a few words to you so you might see how important this is to me in case I didn’t get it right. A couple of old friends wrote the words below.

I need to get my ass in gear now if I want to make it to our appointment on time, so I can’t read over what I’ve written – but please take it for what it’s worth, and I trust that you will hopefully understand how much this means to me – and the power you have to change my life entirely.

Thank you for reading.
With respect, hope, and a bit of groveling,
~ Casey Porter

~ ~ ~

Hello…
My name is Carolyn Jepsen and I am here to write about Casey Porter.  I know that you and he are meeting soon to discuss surgery and I would like to say a few words on Casey’s behalf.

Truthfully, I am not quite sure where to begin this note.  I cannot imagine the decision that sits with each one of you and do not envy either position.  I can only tell you what I know, which is that I trust Casey.  I trust his instinct, I trust his strength and his will.  I trust his creativity and his unbelievable capacity to fight.  Casey is someone who knows better than to live as fully and beautifully as possible.

I met him back in 2004, oh-so-briefly, as he spearheaded the performance end of a Dresden Dolls DVD shoot.  He was vibrant and full – I had never met such a force in my entire life.  A professional artist wrangler, stilt walker, fire-breather…simply put, an outrageous tornado of art and joy.  His example stayed with me and remains to this day.

In the last few months, I have read and listened to Casey’s words as he has detailed a sort of spiritual and creative death.  For an energy such as his, there could be nothing worse.

As I’m sure you already know, the miracle of Casey is that he lived through death.  He walked out of that hospice on his own two feet, then went out into the world to keep right on living vibrantly, passionately and fully.  He healed himself as he lives – on his own terms.

I don’t know the odds that this surgery holds, but like I said earlier, I do know that I trust Casey.   I believe him when he says that he understands the potential consequences.  I believe him when he says that, for him, this is more than worth the risk.  He sees this surgery as his best shot at reconnecting to his heart and spirit – to the self that he fought so hard to fall in love with.  I believe he has earned that shot and as you consider whether or not to give it to him, I hope that you will consider this: Casey Porter knows what to do with a chance at a greater life.  He won’t waste it.

Thank you.

~ ~ ~

Dear (Dr, Mackersie),

I understand your hesitation with my brother’s surgery and the complications that may arise. I work as a surgical tech for LAC+USC trauma and I know the risks. But this beautiful man has been on deaths door and spit in its face. He has the miraculous spirit that will not give up, and that is why it’s been so painful for me to read his posts over the past year, watching his spirit fade. Casey is strong and tenacious, and I know you can work miracles to vastly improve his quality of life.
Please. I believe in him, and you.

Warmly,
Cat Colegrove

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

In writing this, I’ve come to an understanding. A remembering, so to speak.
Since I started walking this life of dreams, I have never let anything get in my way. I never let anything stop me.

Though the circumstances are different, I need to remember that through it all, and as well as I may hide it – I’m still that person who will never quit.

 

The Fun Begins…soon (Kicking, day 0)

No ceremony, no ritual. Little more than a momentary pause as I looked at the small white pills in my hand this morning, but in that pause I thought of the nine years gone to the past, and the days or weeks of torture & agony immediately coming as I took my last dose of morphine. Ever.

I took the two half-full bottles out of my nightstand drawer, grabbed the near-full “emergency” pill container that I have kept for three years and moved them across the room to be placed somewhere clever later. Out of sight, yes – but I think out of mind isn’t very likely, at least for a few weeks or more.

If I could figure out the technique that always seems to work when I “organize” things so that they’re easier to find, only to end up lost for months when I actually *do* look for them, then that would be perfect – but I don’t think that will work. If I actually *want* to lose something or forget where it is, it seems inevitable that I’ll find it, even in the least likely of places.

I should figure out that backwards science & write a book about how to use & control it. I’d make millions.

It’s a strange feeling, kicking morphine after so long, so many years of depending on it. So many years of letting it control me.
I was half-expecting a huge mental fanfare – streamers popping out of my head, flame effects shooting out of my ears and little tiny balloons dropping from my nose, but alas, nothing of the sort. It was almost as exciting as putting my pants on.
Okay – as exciting as putting a freshly washed pair of pants on that have yet to acquire any dog hair on them, but still, not much more than that.

The exciting part – well, that will most certainly begin tomorrow, most likely as I race to the bathroom desperately trying not to crap myself in the 20 feet from my bed, or stopping in the middle of eating something for the same reason. It never ceases to amaze me how food can go through an entire body’s system almost as fast as dropping it – as if during withdrawals everything moves around and there is just one direct line from the mouth to the ass.

I think there should be an “Opiate Withdrawal Olympics”, with challenges such as ‘The 10 Meter Toilet Dash’, ‘The Cold Sweat Pool’ (judged by the amount of sweat the body produces in one night of attempted sleep), and ‘The Snot Sprint’, won by producing the most water-like mucus out of the incessantly running nose in an hour. Of course there could be many others – the most sleepless nights, muscle spasm gymnastics, distance or quantity vomiting, most creative screams of agony… it could be fun! Well… at least for the spectators.

And now, off to do some final preparations – give Ruby a *really* good walk, enjoy some of the last sunshine I might be seeing for a few days, clear a direct path from bed to bathroom, send letters to my Mother & Father thanking them for their birthday cards (finally) – whatever else I can think of.

I’ve decided to document the fun with pictures. Here’s one I have titled “Before the Descent” aka “Keep the fog outside of my head” aka “oh, shit.”

See you all in hell. Be grateful you’re just looking through the window.

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 12^th 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.

Day 4 of 1500

Day 4 of 1500

Still the constant pain, nausea, and feeling like there is a colony of ants burrowing under my skin when I am adventurous and tired enough to try to sleep, but… it’s getting better. *I* am getting better.

I have tried before to do this. Tried, and failed. This time I am winning. The halfway mark has been passed. I WILL win, I will come back from over four years of the numbness, the absence, the nonexistence, the empty shell of who I was, the man I remember who was burning with passion and fought for dreams.

It was well over four years ago that I was prescribed my first bottle of morphine, and then it made perfect sense. The pain was bearable but still got in the way of most things I wanted to do, so when my doctor recommended the opiates, I warily accepted. I knew what would come of it as I still had clear memories of the agony felt over twenty years ago when I was kicking heroin for the first and final time after a daily two year habit. I knew what would come of it but the alternatives were weighed and the decision was made.

Twice over the years it appeared as if I wouldn’t need to wrestle with this, that everything as far as the morphine addiction goes would be well taken care of by simply dying, but appearances can be deceiving, and here I still am – one year and one month after my last hospital stay, and getting better as the days progress. Better, but only in some ways. Everything was still blunted, vapid, uninspiring. With the help and inspiration of incredible people, I had conquered death  – but only to come out on the other side still a ghost.

I want to give you more than that. I want to give ME more than that, more than haunting memories of seeing how high I could fly, how big I could dream.

No more. No more wishing I was here.

I’ve gotten over what I hope and believe to be the hardest part, last night was actually able to sleep for four hours after being awake for thirty six, and though I am still days away from “better”, this time I am NOT going to give up the fight.

There is no way in hell that I am going to go through this again.

In a week I’ll get my monthly ‘disability’ check for the impossible-to-survive-on $380, and hell – I just may celebrate by spending some of it on a nice dinner, seeing as it will actually have time to digest after all of this is over.