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.

A Warrior Awakened

There was a time that I was called, by many, a warrior.
I have fought for the life I dreamed of and found it, I have fought through what most thought what was the inevitability of death and rose above.

For a long time, I looked for a different word than “fight” – but truly, nothing fits this better.

I will always fight for something better – whether it be myself or others – but it’s usually me, usually the things that have been ingrained in me that I battle.
Eventually, I always win – for now.

A warrior is not your everyday ignorant fighter – there is discipline involved, knowing the good from the bad, knowing the battles that you’re above, knowing the battles you can’t win and walking away.

When the person you battle is yourself, the same rules apply. The same discipline. The same grace.

This is my life right now, looking over my past and yearning for a better future because of it. I fight. I learn. I battle the ghosts and old bones inside of me.

I’m learning again, teaching myself, climbing up to grace.

Eighteen months in  a hospital and all that went with it crushed me…

But I will be that warrior again – and I will bring you with me – if you desire.

Do you?

The Wings Will Remember

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Twenty Six Days. July 6th, 2016. Wednesday. It’s time. It’s time for me to stop looking over the edge, stepping back, taking a deep breath & counting down then “waitwaitwait that isn’t perfect, what if-how do I- the words aren’t working!”… and Finally. Just. JUMP! I’ve been working towards this for such an agonizingly stupid long time, digging up every little bit of information I could find on how to do it “right”, and filling my poor little head with more information than I could ever use, while simultaneously giving me plenty of time to brew up an Olympic-sized pool of self-doubt as well. It’s been a productive time – just in the wrong direction, at least for the most part. I mean – there *has* been forward movement, it was just kind of like hacking my way through a jungle with a spoon. I’m weary of the doubt. Tired of beating myself up. It’s time to make this dream – the largest dream I have *ever* reached for – into reality. One way or another, I will make this happen.
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Working to the Beginning

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It’s hard for me to accept. Impossible to foresee what the outcome will be.

Either all I have worked for comes to fruition and my life changes entirely, or it doesn’t.

Like the letter I sent to the person who, after searching for 25 years, I knew was my birth mother, like fighting so hard and so long to make a dream come true that the final act of jumping into the unknown is the only direction to go anymore, I need to take a deep breath, and believe.

It’s time to let go.

Let go of nearly all of the control I had, and just do my best to aim away from the rocks and trees as I soar past them, faster than I’ve become familiar with over the years of lying immobile in a hospital bed and then my own, planning for this time as life passed me by.

It’s time to join life again. To jump back in the game.

It’s getting closer. It’s what I have worked so hard for. It’s what I have studied far too much for – and I’m terrified. I need to remember how to love being afraid, because I *sure* as hell have forgotten – and I recall not that long ago when being afraid, when doing something I had NO idea how to do was like a drug for me – a euphoria. Where the hell did that person go?
I need to do some digging around inside of me & find him again. Maybe he’s just sleeping – feeling unloved and under used.

This will light a fire under his ass.

Very soon, it comes to the point where I have to release this to the world, and see if they approve. See if they are interested enough in me enough to support my project, and hope that they are.

Will they see me? Do they want to know me?

Will they love me?

Sure, I’m frightened – but I also believe that it’s time to light a fire under MY ass, and which-ever way this goes – in some way, it will be successful.
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Writing Past The Walls

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I sit up in my bed drinking tea, Ruby sleeping beside me snoring gently, off & on. It’s just after 6:00am & there is a rare serene quiet to the Tenderloin neighborhood of San Francisco – no sirens, yelling, horns honking… even the crow’s abrasive caw-shout isn’t heard.

I adore the solitude of this part of the day, & try to be a part of it if the night before has been kind enough to allow me to. Of course, sometimes it isn’t, especially these days with all the physical crap I have to deal with, sometimes enough to wake me up, sometimes enough to prevent me from sleeping when I intend to in the first place – but today, this morning, is mine.

I’ve been thinking a lot about perfectionism. It’s something that I’m cursed with, and has for a large part of my life really screwed with things I wanted to do, going so far as to prevent them from happening altogether.
Without question it’s why this whole book project has taken so long to come to fruition, with me (aka “this asshole”) ripping things apart, re-doing & incessantly re-writing the copy for the site & never being satisfied – and it can’t go on like this. Not if I want to continue, and SURE as hell not if I ever want to finish my book.

I look further into the need for everything to be perfect & find that it could be based – most liely IS based – in fear. If I keep on changing things, I never have to show it to the public and am still able to say that “I’m working on it”.

I need to work on that. I need to change that.
If I don’t, then my life & all I want to do will be entombed in frustration, ripping away the joy I remember when I *did* finish things whether they were perfect or not in my eyes – performances, my magazine – hell, even my Living Statue garb when I began. I still can’t believe I started doing it without the frock coat & in my Dr. Martens – tattooed arms bare, black boots, poorly done makeup – but I DID it. I got out there. I was appreciated, tipped well, and hells- it worked.

I need to remember that lesson.

Things will never be as perfect as I want them to be, so I need to stop needing them to be. I need to remember that it is only a foolish fear that I created inside my mind to help avoid the time when it will need to be shown to the world.

Some people will like it, others won’t – whatever it is. Whatever it is, even the smallest dream that I make happen is worth FAR more than the largest dream that I never attempt.

That last part is from a quote I read somewhere, and it fits perfectly into this… but there’s also one of *my* quotes that may work well in this case: “Never let logic stand in the way of your dreams.”

My life began when I started making my dreams come true. The first time it happened & many times after that, they were small dreams (if there actually *is* such a thing) – they took little effort or fear – but the feeling that washed over me when I made them into a reality was – and will ALWAYS be – incomprable in the sensation of strength & accomplishment it gave me, and each one reinforced me with the confidence to reach for more…

…but then I got sick. Somehow, although it was the greatest & most difficult thing I have *ever* done, coming out of that – saving my life when no one else could, and literally dancing out of the front door of the Hospice (which admittedly was more of a stylish shuffle aided by my cane) – for some reason I don’t see that as an accomplishment.

Sitting here thinking about why… perhaps part of the reason is because although I did what many people believed unlikely or even impossible, I focus on more of how the sickness ripped my life apart – and in many ways continues to. How much it took away from me, instead of how much it gave and allows me to give to others… I had never thought of that until now; not even the idea that it didn’t feel like something good I did – and as a result was likely at least partially responsible for breaking the habit I had built of fearless dream realization.

Great. Something else I need to work on – but at least now it has a name, and the beginning of an understanding. That is pretty damn cool. I know where I should be looking now – instead of before when it was like trying to fix the brakes on a motorcycle by adjusting the throttle.

It’s now just flipping a few switches in my head from self-pity to gratitude that I’m still alive. Shouldn’t be that difficut, right?

It’s LONG past time to start making dreams come true again.
And simply through writing it out of my head, I just may have found the reason why it’s been so godsdamned difficult for me lately.
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Connection

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I was 13 when I first put pen to paper, and realized not only the fun – but the magick, and most importantly, in my joyless teenage years, the therapy it offered. The therapy I desperately needed.
You see – I was the most insecure, terrified and nearly silent kid – but when, one night, a pen found its way into my hand… my entire world changed. I had finally found something that would listen, and unlike talking to people, I felt that, at last, I wasn’t being judged. The paper would just sit there and accept all I had to say – and the more I wrote, the more it listened. It was the only friend I could talk to about all the confusion, angst, and above all, the loneliness & solitude I felt growing up.

The writing began almost entirely by accident. I had just discovered coffee, and one evening stayed up all night in the tiny kitchen in my parent’s home, writing & drawing in some sketchbooks I had laying around for some reason. Eventually I got together a few dollars, and after school one day went to Warwick’s – the main stationery/office supply/book store in La Jolla, and bought my very first actual journal. You probably know exactly what that journal looked like – the classic black, pebbled hardcover, 5.5”x8.5” blank book. Though everything before it has been lost or thrown away by my adopted parents, I still have that very first journal – though now have 10 others just like it, full of my heart, mind, and guts. My friends.

When internet journaling came around, it took me a while to warm up to it, but eventually I did. All of the sudden, people could actually read what I was writing… and when comments began occasionally coming in, and people were saying nice things about my writing, or connecting with it, or, sometimes, even thanking me for saying what they felt – all of the sudden I wasn’t alone anymore. With each post, with each comment that someone left, a little more fur was rubbed off – like the skin horse in The Velveteen Rabbit. People could SEE me, and sometimes in me, they saw themselves – and perhaps for the first time, I felt real. Maybe they did as well.

After a lifetime of feeling inadequate and like my life didn’t matter, I had found a way I could give something back to the world. A way I could connect with people, regardless of where they were, and not feel so alone. A way I could help… and maybe, just maybe – change someone’s life for the better.

As time went on however, people’s attention spans kept getting shorter & shorter. Less people read my words, less people commented, and the loneliness began creeping back. I started writing less, but – I just couldn’t find the words, or the passion I once had to write them. That was a HUGE mistake, as I had forgotten the reason I began writing, which is solely for me. Because I need to. Because the “paper” is still the best way to keep learning about my Self…

But there is one thing I would really like to do – something I’ve been thinking about for a few days. I write all this drivel, and except for perhaps a few, I don’t know most of you who reads it. I don’t know about you, I don’t know who you are, I don’t know about your country, what you like to eat, what your favorite song is – or pretty much anything about you – and I would really, really like to.

So I ask this of you. Tell me a little (or a lot) about yourself! Anything you want. Anything you don’t mind sharing, and as much or little of it as you want to. Just, at least, to start a conversation. There are no rules. Ask questions, send pictures, say anything you feel and know that I will not only appreciate it – I will absolutely LOVE it! Hell, even share this with friends of yours – let’s get people talking & connecting!

Of course, you are welcome to play along or remain silent – that’s entirely your choice – but I do hope you say something – and I promise – I will reply. Much love, and thank you for reading.
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