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.

 

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With none.

Rolling rolling rolling and I thought this would help I truly thought this would help.
It didn’t. The darkness is still there and the lines on my face cutdeeper, the cuts in my heart bleed water there is nothing left.

Again, I’m wrong.

There is something, somewhere, for me. Some way to feel useful, valued, worth all that I fought so fucking hard for – because baby, this sure as fuck ain’t it.

This sure as fuck ain’t it.

There’s something inside of me that has lost the music, lost the dance, the laughter and truth of life and I fall again, further, further than years past.

I knew how to dig myself out then.

I just wrote. Wrote of all the pain and beauty, the fire and freezing cold, the life and death that was every fucking day of my life from the moment I rolled into Austin. The life I lived before, the feeling that I was fucking HELPING one, a few, some to move forward, to not be like I was, to dream, follow. It’s not all about them, it can’t be. I’ve been searching for this my entire lonely life, and I mark the notches on my hatbands. They all mean that this, that meant something.

And I remember the love. Most importantly, the love. Love lost, and love that remains. Gods. Either I was a fool, or she was smart. Whate vefr needed to happen did, and I left Tea behind. That is what was necessary, but gods, I wish it wasnlt now.

As I struggle to write my memoir, I ask myself who I was – and who am I now?

How fortunate the man with none.

 

I think that that was when was in my deepest truth- – just the road, Bean, a shitty van ane forever in front of me.

Forever.

At least that’s what I thought at the time.

Cut these lines in my heart away, cut me from me me from you me from all I have believed in and just…. Just tell me I was dreaming.
That there was no rason to fight like I did, thaat there was no reason to believe in who I coud be, that all the tears I cried were in vain and….

And I won’t believe you.

I did something. I helped. I had value.

And now that I’ve tasted it, the rest of life seeems so fucking bland.

This is a cry for help… give me a purpose, a reason, air to breathe and appreciate. Make me work for what I can do.

The steel wheels keep rolling, and I, in my solitary seat,

I try not to cry.

 

Scraping it away

Portland. Took the train here, a 17 hour trip turned into 22. Ice on the tracks over the mountains, checking the train to be certain it worked like it should despite the freezing weather, letting other trains pass while we waited on a side-track, expanses of white fields & forests making the perfect winter scenes. I loved every moment. Let me take it all in.

Here is not much different than there for me, as I lay in bed writing & almost protected from the cold by a thin comforter. If you saw me you wouldn’t see anything different, but it’s everything inside & outside this skin where you will find the magick I needed. I need.
I pause, listen. No sirens, no shouts. I open the blinds on th ewindow, just enough so I can see outside to the yard, the neighbors yard, further to other houses. No movement. Nothing to disturb the perfection – not even footprints in the snow. There is a serenity here that I haven’t experienced in years, but I fear I will have to head back to San Francisco before it is able to take hold on me. At least I was able to scrape a bit of the city away, the grime on my soul dropped somewhere from the train & gratifyingly lost in the seas of snow-covered pines. It’s only a bandage on a much deeper darkness though, a smiley-face sticker over a gas gauge. Still, I’ll take what I can get, and for now, this is heaven.

The temptation to move here is palpable, but I know that deeper its just needing to move anywhere else just to get away. I’ve been in San Francisco longer this time than anywhere since I was a child, and for years now wanderlust has been eating at me, eating me away. I realize that the things I want to have San Francisco hold onto me for aren’t there anymore – not enough to give good reason at least. I need to get away, but I don’t need to figure out how right now.

I sit in a room in a home just outside the city and look out at the enormous backyeard that Ruby could play in, the backyard where I could roll around on the grass with her, the yard where I could set up an archery target that wasn’t only 10 feet away. The yard where I could grow food, plant trees, flowers, and set up a desk to look out onto when I write.

My house is somewhere. Maybe it’s right down the block, just waiting for everything to work out, waiting for me.

Tomorrow afternoon I return to San Francisco, back to the sirens, shouts, the crowds of people, the perpetual mayhem of my neighborhood.

But back to a warm room that is mine, has a roof, water, kitchen with maybe a little bit of food left in it – and it has Ruby.

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?

seeds of dreams

Reading over the life that I lived before I ended up in hospice is both beautiful & crushing. Right now (then) I’m getting CultureFlux in gear, performing on Alcatraz, the Queen Mary, being flown to New Orleans – and I find emails from people telling me that I *am* doing something right.

A life grown from nothing but the seeds of dreams…

I remember that person, his strength, his will, his desire to make everything better – to live a life of value not only for himself, but for others. He lived life like nothing could ever stop him…
until something did, and ripped the life he had built away.

 

It’s been a challenging few years. I was taken away from the work I loved and set out to try to survive on the pittance that disability gives me – the first time I understood that some things were impossible, even for me.

Now, I look for work again, but work I can do before I *hopefully* get the surgery I need is scarce; each day I go through what’s available on craigslist, and each day the depression and futility digs deeper into me.
But something needs to change, somehow. I know better now than to depend on the book, but I need to figure out what… and I will. I’m remembering who I was again, who I am.

Unfortunately that doesn’t solve today’s needs – and for that I still need your belief in me. Your help.
I’m completely out of coconut water & nearly all food, save for some left-over potatoes and oatmeal – bland as hell with no sugar or milk. I *do* have salad dressing, but after careful consideration I realized that wouldn’t work – I just don’t get that drunk anymore.
And of course, there are the herbs I need, and most importantly the food Ruby needs…

If you can, if you aren’t completely sick that I *still* need help (like I am) – then please do. I promise to do whatever I can, as *much* as I can on my side…
my paypal is ksea@culturefluxmagazine.com

I’m finally beginning to believe in myself again. It’s been a much longer time than I’ve let on.

Thank you for anything you can do. (Including & especially work.)