Just sit. Be quiet. Think.

Though I don’t do it as much as I used to or would like to now, it is still one of the things I relish most in life – having the time to do just that – or making the time.
But admittedly, as much as I love it, it’s not something that comes easily to me, and never has. My mind just simply doesn’t work like that. My thoughts don’t organize themselves into something that I can easily follow or make sense of, and my head seems to enjoy dancing around from one thought to the next, as if they were in that lottery-ball machine, bouncing around & randomly shooting up the tube into my awareness.

Sometimes I can let them go – just a passing thought of little consequence, or something that I can figure out or decide upon right then and there, gathering a bit of logic & other things I may have learned along the way – but then there are others, like the one I only just had – and the only way to play it out in my head so that it makes sense – is to write. It’s the way it’s always been for me.

Lately I’ve had a number of people comment on how much better I’ve been looking – how much healthier. Enough people to make me wonder why, and try to figure out if anything has changed, or maybe they just haven’t seen me in a while. Probably a mixture of both, but answering it so easily with absence – well, that’s not going anywhere. That won’t help anything or get me thinking about a path of possible growth, something that has happened that I can continue… But if anything has changed? Now that could be interesting – so that’s what I went with, as well as I could inside of my head. And I found an answer.

I’m creating again. I have a purpose again. I’m doing something I love, and best of all – making people happy.

And, in return, my health has improved, feel happier, and with my chainmaille jewelry business, there seems to be, as long as I don’t let myself procrastinate it all away or find a place where I’m “okay” but not where I want to be and call it good enough – there is almost unlimited growth potential. I’ve even figured out a way to move beyond the terror of not doing every little thing myself.

I’ve found, however, that it’s fragile. I have such a fucking frustrating propensity to procrastinate, to put things off with some of the best excuses imaginable, that what I need to do doesn’t get done – and I’m only happy when it does.

I need to remember that. I’m only happy when things are moving forward, when I’m growing, when I’m stepping out of comfort into something I’m terrified of doing –  because that’s the only place I find passion. Only then do my eyes shine the way they used to, and only then… only then, I believe, does my mind use the power it has to heal my body, because it has a reason to.

Why else would it have been that I was mostly fine – able to walk the 3/4 mile to the cafe from my motorhome to work on my magazine every day for months – and then within the first week of being in the hospice with nothing to do, my body decides to completely shut down?

There’s something in that – and now, if you’ll pardon me, I’m going to get my ass in gear and get to work. I have a business that I love to make grow, and a life to continue to live.

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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.
 

 

To Go.

To live each day as if it has been stolen from death. To wake up every morning knowing that the possibilities are infinite, to release myself from the burden of “how” & the anguish that I encounter every day. To grab Ruby & drive to the Sea, to the mountains, to my mother. To raise my voice and shout at the sky “I am alive, I am wonderful, I am free. I AM.

To feel again the roads underneath me, always looking forward at what I can be, not what I was. The past always takes from the present. To again realize the physicality of the world has its boundaries only if my will is weak, only if I am afraid. To again accomplish the things that the normal person would think impossible.

To go. The wheel lightly held in my hands, the windows down & wind cleansing away the past. To wonder in anticipation and excitement what lies around the next corner, over the next crest. To keep going and discover where I end up. Always forward. For a driver, a wanderer, a dreamer, not having these things takes away part of the soul.

I wake up every morning and say “I wish.” I wish I could take myself and Ruby to the Sea, to the mountains. I wish I could get to events & trade shows to show people the things I can make when my hands meet my heart. I wish I could help people get to where they need to go, visit others who can’t go anywhere. I wish I could visit my Birth Mother, and finally get to know the woman who gave me this life. I wish I could make hers better. I wish I could get in my car and just go, leaving the unforgiving brutality of the sidewalks behind me and again follow the wind. Again follow my dreams.

I wish.

I will.

Life, Death, Dogs. A Rooftop Contemplation

The occasional whisper of tires as a car drives by below, an unintelligible shout, the scattered songs of birds. The only sounds at this hour. Only the crackheads & I seem to be awake. Even the sirens are quiet, sleeping.

It’s 4am & I’m up on the roof of my apartment building with a fresh cup of coffee, a cigarette, & Ruby. The clouds above reflect the city lights giving a faint glow, just enough to see by. A cool breeze plays with my hair, blowing it in my face then away. I wrap my robe a little tighter around me.

I sit on the short wall of my building, look down at the weeds growing in our forbidden & neglected back yard. Near the far right corner calla lily’s bloom, defying the otherwise abandoned and unloved desolation. With their beauty inevitably comes a warm sorrow as I’m reminded of when Striggy brought a gift of bone-white lily’s to my tent in Austin. With love & reverence I placed them on top of the pale blonde box I had picked up earlier that day, already made into an altar surrounded with candles, a picture of Bean propped up against the box that now held the ashes of the most amazing dog & companion I’ve ever known. She was killed by a freight train a few days before, found by friends lying between the tracks, her favorite stuffed toy a few inches from her head. Nearly 13 years later & the tears still fall for her.

I turn back facing the roof top, close my eyes, take in a few deep breaths as I find a strange comfort in this sadness. Now, it’s filled with love and warm memories instead of the anguish I carried inside for years, holding it tight, afraid that if the pain wasn’t there I would somehow be betraying her memory.

I know better now. I understand death better now.

I think of how exquisite this life is, how fortunate I am. Occasionally I still let the weight of it all get to me and forget these things, but not now. Not today.

I open my eyes and catch Ruby briefly chasing her tail. I chuckle silently to myself and somehow love her even more.

I think of the time I spent in Hospice. Months on end so close to giving up, so desperately wanting to stop being strong, and each morning having to somehow find just one reason to keep fighting. One reason to stay alive.

As impossible it seemed to be able to imagine at times, I needed to believe that I would somehow get better.

I had to know, with as little doubt as possible, that there would be mornings like this one to look forward to.

Raising hell to escape from it

Today is the day I show them what’s been hidden behind the curtains.
In a few hours I make my way out the door to the hospital, for the monthly-ish appointment with my Doctor of nearly eleven years. He’s seen and been there for me for everything I’ve gone through, always by my side, always caring, always treating me as more than just a patient. John seems to see me as I see him, as a friend, and though it’s unlikely he shares the same sentiment towards me, I hold him as one of my best. He knows more about me in some ways than anyone else ever will, and he’s seen me at my physical worst.

But he hasn’t seen what I’ve been hiding. For the most part, I’ve kept that from him – from everybody – and have always played the role of the cheerful patient, regardless of how I physically felt. But this reaches far beyond physical. Sure, the hernias I have are somewhat painful, but more of a discomfort than an actual pain for the most part as I feel my intestines slide back through the muscle wall and find their little pocket of flesh when I stand and let gravity have its unforgiving way, stretching it like a growing foetus.

For five years, since my umbilical hernia started stretching my belly and giving me an outie that looked like I swallowed a cucumber whole and now it was sitting in my stomach, one end pressing up against my spine and the other trying to force its way out of my navel, I’ve been trying to get the operation that tucked everything back inside. Call it vanity, call it whatever the fuck you want, but I hated it then, back when it was a junior deformity, and it’s only grown; grown to the point of completely fucking my quality of life.

And unless this surgery is done, it will be there for the rest of my life, continuing to grow and get more disgusting as the months progress – along with my new hernia, an “inguinal” hernia, which sits, growing rapidly, jut to the top right of my groin. It’s nearly as if I have three ball-sacks now – one coming out of my abdomen, one on top of my c&b, and the original. From the discomfort to the monstrously hideous appearance that prevents me from doing nearly anything involving core muscles to simply taking my shirt off in front of *anyone*, I’m ridiculously limited in the things I used to love doing. STILL love doing, but can’t or won’t.

I’ve been nice up until now. I’ve talked rationally, pleaded, begged – I’ve written emails not only to my doctor* but to the surgeon who won’t do the operation based on a few minutes of poking & prodding and through that deciding that it was too risky, and I’m fucking tired of being nice, of being understanding.

Today I go see my doctor, and today, I’m not hiding my anger, pain, anguish or sorrow. I’m going to be someone he’s never seen before, and though performing the surgery is not his decision, it just might give him the balls to relay the importance of it to the person who is.

I’m fucking done being the good patient. The understanding one. The rational one.
I don’t give a fuck anymore, and it’s time to raise some hell.

*
Dear John,
Thank you for your call on Monday.

I appreciate you putting in the order for the hernia support belt, but to be truly honest with you (as I’ve always tried to be) – if the only way I’ll get the surgery I need is to have my intestines twist, then that’s what I’m going to try to somehow make happen.
For over four years (since Kat & I stopped seeing each other, back when the hernia was about 1/5 what it is now) I have pushed any possible romantic involvement away, not daring to even innocently flirt, terrified of even the possibility of anyone seeing the hernia, even more than I was afraid of telling people I was HIV+.
I haven’t even kissed anyone in over three years.

I used to have the morphine to numb the oppressive loneliness that the hernia has created in my life, and now, I don’t even have that. Living a life without even the hope of finding someone to share it with is getting to be too much to bear. I try, but at times I feel incredibly weak.

I’ve turned down offers to go swimming with friends, to go for camping trips at rivers or lakes, and anywhere or anything where I might need to take my shirt & hernia truss off. Even I try not to look at it in the mirror.

Though I understand the concerns about the ascites, I am able to keep it at a bare minimum hardly even trying to. On the day my inguinal hernia ripped through the muscle, I can *almost* guarantee that it had nothing to do with ascites – when I first felt the sharp pain, I was just playing with Ruby a little too enthusiastically. Due to the umbilical hernia combined with the months upon months I was mostly confined to a hospital bed, my core muscles have weakened to the point where they don’t have the strength to keep things where they belong anymore. I live in this body every day & pay close attention to it, and strongly feel that the weakness of the muscles have an incredibly large part in it all. I know that I can keep any fluid buildup down to the barest minimum before & after surgery if I’m allowed it. It’s barely an issue even without taking the herbs or meds for it these days – and if I have the surgery I’ll do everything it takes to heal without any complications at all.
I just want to feel like I’m alive again…

John, I’m sure you’re aware that it’s more than the lack of romance that is causing the emotional pain. The life I worked so incredibly hard to create -performing, costumes, and simply the joy for life that people once said inspired them – that’s gone, and it’s almost entirely due to the hernia & it’s physical & psychological effect on me.

When I was in hospice & the hospital after that I have NO doubt that it was my will to live that kept me alive and instilled in me the drive to learn to walk again. The spirit I once had to remain alive is dwindling.

Though it seems like Dr. Makersie is kind & thoughtful, there is one thing that he doesn’t seem to understand. Though the “statistics” say there could be a 30% chance of complications with the surgery… as my will to live fades, the chance of me dying without the surgery increases every day.

The Treasures Within

It’s the mornings that I like the most these days, at least when I have the energy to find them, to keep my eyes open regardless of how little I’ve slept & live in them. The dim grey light from my bedside windows, the yellow light of my table lamp, the sublime quiet in a world that is so otherwise noisy & obtrusive.
I feel the cold of the air on my chest and arms, the rest of my body tucked tightly & warmly beneath my comforter, the weight of Ruby snuggling up to me for warmth.

rubysnugle

Coffee heated up from the day before, I take a few moments to read or think and let my mind wake up just enough. It’s these times where I feel the most grateful for this life, even as odd as it is these days.

I find that in many ways writing this book, my memoir, is toxic to my current happiness if I let it be – I read and remember and write the adventures of a vagabond, a traveller with a heart so light I could feel it glowing inside of my chest, a heart so light it flew. I read and remember and write of love, of pain, of the joy of being untethered, free.
I wonder how a person avoids comparing their life to a more glorious one they themselves have lived, and find no answer to placate me – but we must keep on going, moving forward. That is the only way – but moving forward by writing of my past puts a different twist on it, makes it ever so much more difficult, and it comes down to forcing myself to get through every single word, every sentence, every remembered feeling.
Then there are the times where I simply need to stop. I don’t know what bothers me more – writing my past, or not being able to.

But we must go on, move forward – even as much as it sometimes hurts, even as confusing and frustrating as it sometimes can be…

And godsdamn it, I need to take Ruby out. Back in a few minutes…

* * *

I feel at times – frequently – that I’m not as creative as I once was. That I don’t have the spark in my soul that I had, that the passion that burned in my heart for life and living and creating and loving every single little fucking thing about this extraordinary existence has fallen away over the years, and now the fire has become only glowing embers and the ghostly smoke of yesterdays.
And the more I think about this – or better said, the more I write about this, the more I step away from the excuses. I begin to realize the level of bullshit I’ve had to tell myself, convince myself of, simply to hide one simple & obvious thing: I’m afraid.
I’m afraid that I don’t have anything to give anymore, I’m afraid that no one will hear me or care. Worst of all, I’m afraid that I’ve forgotten the words to sing this life, the steps to dance with it.
In this understanding I have a place to start, a new strength to use against it. Of course we will be afraid – it’s a part of life, a healthy one – but that doesn’t mean we need to let our fear control us.
We just need to make room for it, to invite it along for the ride but refuse to give it the wheel because godsdamn it, this is OUR trip, our life, our love and passion and need, the fire that does not go out – we just need to remember to breathe on it once in a while. We need to remember to breathe.

Years ago, perhaps when I was 16, I found a small book in a stationery shop that caught my eye – “Inevitable Papers”, by Cooper Edens. I bought it with the last of my money and carried it around for years, and though the entire book is wonderful, it was the last line that was burned into my heart. It was the last line that, quite likely, made me into who I am today: “And how long have you been the language of a story that could be true?”

This is my story. Our stories, and each moment is an opportunity to make them into what we want them to be. We can be afraid, but our courage needs to be stronger, bigger, more needy and persistent so that we don’t have the time to allow or fears to take over and stop us from being who we are.

We need to have the courage to bring forth into this world all the hidden treasures within us. They are there. They are waiting.
We just need the courage to let them sing.

Now on my second cup of coffee, the sun melts away the grey morning light – and until it becomes habit again, I make a conscious and effective effort to let my courage shine through the fear.

It’s a good morning.

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.

 

one of those days

I look out at the grey shy and feel its reflection in my heart.
I look at what my life has become after fighting so hard to keep it, and wounder if I would have if I’d known where it would lead.
For years now, broke, hungry, depending on others just to survive, the dreams I once had all becoming less substantial, less believable as time progresses and I look with a hard eye on reality. I don’t write this for your pity or encouragement. I write this because it’s what I feel, all that I see in front of me.

The last hope I have, the last thing that might change this life of nothing is my book, and even the excitement of that has waned over time and the poisoned questions I always ask myself.

But I need to try. I need to keep going, if only for that. Only for that. Only for the slight possibility of perhaps helping someone else, of perhaps helping me. Of the possibility of breaking out of this place that I’ve built inside my heart, ripping down the walls I hide this sense of hopelessness behind and letting it go, letting it dissolve.

I still remember how to fly – I just can’t seem to get a running start.

Just one of those days.

Stubborn as f*ck.

Hey everybody!

I’d like to thank you all again, while I have you here in such rapt attention, for your support those few short months ago. You guys taught me a lot – or more accurately said, reminded me of something: The book is the most important thing. Getting it written, sharing a story that will be crazy enough for someone else to read and most likely say something akin of “All of the sudden, my life doesn’t doesn’t seem so bad!” or, of course “Okay, screw this miserable life. I’m going to follow my dreams like this guy!”

(I’m going to need to put a legal disclaimer on this book, aren’t I?)

So yeah, the book. That’s what I’ve come to talk to you about. Dig this:
In 5 days, on November 1st, I begin an incredibly optimistic endeavor. Y’see, I’ve joined a thing called NaNoWriMo, which is short-ish for National Novel Writing Month. Yeah, it’s a thing.
While “they” encourage you to write 50,000 words in 30 days, I did the math and that’s, like – 126 pages, or something. Half a novel.

SO, me being who I am (which is somewhere between a damned fool and a very ambitious dreamer) I’ve decided to shoot for 120,000 words in 30 days. Because maybe I work better with an impossible challenge. Or maybe I’m a godsdamned genius. Or maybe I’m a friggin’ moron.  I still haven’t figured that one out.

But what will I do with an entire novel, an earth-shattering, life changing, epic opus of literature sitting around on my computer? What good is THAT?  No good at all, that’s what good it is.

So this is the plan: Somewhere around the 13th of November (if I’m not catatonic from trying to write 4000 words/day) I’m going to launch an IndieGoGo campaign. It’s like Kickstarter, except you get to keep the pledges of support – which is a fancy way of saying “the cash”. This time, instead of reaching for the stars, I’m only going for the moon. Enough for good editing, publishing, promotion & marketing, and paying the artist who helped me in the original campaign. Not in that order, The artists time comes first. Maybe some so I don’t have to eat my shoes or dog. (This “starving artist” thing is SO not as cool as it sounds.)

Yeah. 120,000 words in 30 days without going completely insane, just mostly. Then edit the crap out of it, and get the book published. And as an afterthought, not die.

Wish me luck! And hey – if by some strange chance you want to support my eating AND getting the book out to the world, you can feed me through Paypal! Not actually food as it’s not one of those rat-maze reward trigger things (which is the official scientific name), but a way to get some. Gods, I love this modern world. Sometimes. My Paypal address is Casey@kseaflux.com. That’s also my email address. Cool, huh? TECHNOLOGY! (Accepting food help starting now. See “Starving Artist” reference above.)

NOW, I need to go prepare more for this insanity. Currently I’m hiding sharp things and padding the walls & my laptop (which might or might not get thrown across the room). And giving anything that could be considered poison to the nice family in the apartment next door to hold. And figuring out chapter titles to kind-of keep me on track so the book doesn’t explode.

I’ll be talking to you all again soon, and again – thank you! (If you DON’T hear from me, please send help. Coffee or whiskey. Or new fingertips. )

LOVE YOU ALL!
~ Casey

Just another beautiful night…

Sometimes life throws you something that you didn’t expect & are better for it. This was one of those nights.

Rose was kind. Kind and wonderful enough to actually PM me and offer to put me on the list, if I wanted. With all the people I know, I hardly know her – but she is the sigle one who approached me without me first asking. I would do anything I could for her because of that. It’s stupid how easily I’m devoted & loyal. I don’t think that’s a fault – at least, not for anyone but me. (Though I kind of think by saying that, I’m now fucked… We’ll see.)

Aaaanyway, I walked from my apartment to Baxtalo Drom (The Lucky Road) – the show she produces and has for quite a while – and in the rare times when I was able to go always had a wonderful time.

Of course, in those times I was lit on morphine, so the times I had, full crowd, amazing performances, all the bells & whistles to make a great evening… were somewhat dulled.
Morphine sucks. (My public service announcement.) (Your welcome.)

Tonight however, my noggin was ALL screwy – sober as hell on the way there, I could barely walk straight. Muscles weren’t working right, mind was jittering like a scratched record – I was a mess. But hell, I looked better that I was and can almost always pull off a little bit of conversation. I made due. No one suspected a damn thing. I’m a pro at this – false smiles were the first thing I learned…

It didn’t take long tonight before the smiles on my face were real, weren’t something contrived. This is what I wrote in my notebook:

“In times like this, I see the fun others are having. Intimate, shared, free.
Regardless of how I’m feeling in mind or body – most times – I do my best to let it contamine me. I begin to honor my smile, I begin to dance. I forget everything but NOW, and there is nothing better than this.”

So yeah, it ended up being a good night. I smiled, danced a bit – and then it was time for me to leave. So I did. Duh. Just felt like it. No good-byes. NEVER good bye..

Until again, if I must say something…

Realizing I had only eaten a bowl of cereal today, and thinking that maybe I should eat something more so the sides of my stomach don;t grind against each other, I decided to do the worst thing imaginable, short of eating a puppy.

Burger King. Bacon Double Cheeseburger. I hang my head as I write that. Good thing I can *almost* touch type. I had to close my eyes.

I ate half, hating myself with every bite – but then, I found at least a bit of redemption. As I walked up 9th street, half a burger in hand, I crossed Market and came upon the Wells Fargo Homeless Troupe. Always there at night, most just kids like I was – when I was.
I offered the still warm 1/2 burger to them, and after a few who said thanks bit no I found one who was willing to eat this crap. Hunger doesn’t let you choose. I felt good & wrong at the same time. It was confusing.

Further up the street I met my 2nd stage of homeless, and though on most every day I walk through them & their really bizarre things for sale, I heard a tune being played on someone’s radio. Didni’t know it, but saw three people dancing.

So I decided to dance with them, and did. WE did.

I find it so beautiful. Regardless of who you are or where you sit or what your situation is…
IF you can let that go, if you can dance with *anyone* – that’s all that matters. That’s all that matters because that will put a smile on your face and light up your fucking heart, and

and welcome back to human. Welcome back to love.

And then I walked another block, turned the corner and was shortly home to Ruby. She was all wiggly ass to see me again. I LOVE that!

I fucking love this life sometimes. Most times.
When I think about how many times I could have taken or lost it, not to experience nights like this…

I love it all times.

And in that, there is magic.

 

Found Things of Ass

For those of you fortunate enough not to be on Facebook, they have this thing. Among their many other things. Things they have.
It’s basically a walk down the ‘ol memory lane, showing what you posted on this day back to the time you joined. When you think about it, it’s kind of creepy, but also strangely comforting in the way that it reminds me of an incredible, absolutely and frighteningly brilliant, beautiful woman I dated for a while in New York, who remembered EVERYTHING that I said or did. Usually it was used to point out how incredibly wrong I was, during one of our arguments, but on occasion she brought up things I did that were all snuggly and nice, as she rested her head on my chest in the rare times that one of us weren’t at school or work, and actually together. (I was working about 70 hours a week managing a kitchen, and she was in law school, working on the weekends. We had lovely dates that consisted mainly of collapsing in each others arms.)

Actually, this facebook thing is nothing like her – but at least writing about it prompted me to think of her again…

ANYWAY, today’s was something I posted on Facebook, and strangely enough not here. I do that a lot, but I think that soon I’ll completely reverse it and post things here, not on Facebook. You deserve them more.

but AS I WAS TRYING TO SAY, this popped up and I thought it was kind-of good and kind of funny, so I thought that I would share it with YOU, my wonderful and faithful blog readers. (Obviously, those who don’t read this will miss out on how beautiful & faithful and wonderful I think they are, so to those reading, just between you & me – you ROCK – but c’mon, comment more, okay? I like that shit. I get lonely – and it inspire me to write more, too…)

SO – here’s the thing I posted there but not here. It was posted when I was in a shitty respite place after an infection that made it pretty much impossible to walk due t the pain, for reference.
I knew that eventually I would get around to it. Thanks for your patience.

Nearing the end of day 9 of the sore-ass marathon. Gods, these beds are horribly uncomfortable. The different shifts and positions you find yourself in for a brief taste of comfort would make an interesting study – comparing the healing speed of someone laying in a 3rd rate hospital bed as compared to the bed I recently left at UCSF, which had so many positions you could swing the thing – pivoting feet up, head up, bringing knees up & down as well as of course your back position…

My theory is that the person in the bricksoft crap bed (up, down, back, legs, with a built-in ‘Sadism’ setting that is permanently on) will be the first one to heal, as the constant position changes and just sheer will and fight to finally get the hell out of this thing and tend to his poor, flattened ass.

In any case, those are the results of this particular one-person case study.

I’m doing what I can to heal – physically & mentally, and last night was able to sit on the edge of the bed for 30 whole secons before the pulsing & throbbing pain in my calf & ankle grew the point of sternly suggesting I bring the leg back to horizontal – but hell, it was progress, and I’ll be damned if I’m going to sit passively & wait for the healing to happen magically. (Actual Dr. care is surprisingly rare & brief.)

There’s a rumor floating around that I’ll be discharged early next week, ready or not. I’d rather be ready, or as ready as I can be.

I’m going to need to make some changes to my apartment when I get home – so be prepared for a purge of some things that you may like. I’ll be giving them away…

All in all, I’m mostly getting better – I always do & always will, but now it;s a race against time and my distaste for walkers.

Now, my ass has taken over my train of thought, so I must bid a temporary farewell.
Never thought my ass could hijack my brain, but then again, I’ve never given it much thought.

~ ~ ~ ~ ~

And then it goes into thanking people about helping me with the herbs I can’t afford to get myself due to the $200/month I get to try to survive on from disability… but you don’t want to hear about that, even if not having the herbs I needed WAS the reason I almost died because of the infection & would have prevented it in the first place.

Okay, back to work on my book project. It looks like the Kickstarter for it is actually gong to launch THIS WEEK – and I’m fucking terrified.

Have a beautiful Weekend – and keep dreaming! Love you guys…

OH! And if you could do the whole “Share, Follow & Like” thing… yeah. I really like that stuff, and would appreciate it. It gets lonely here sometimes.
Lots of times.

 

Still kickin’

Funny how you can be just innocently reading something, your mind behaving for the most part & not going down that road of what you really should kind-of be doing because it needs to get done but you’ve rationalized it really well since it’s still really early and there are SO many more hours in the day to work on what should be done, and then you read something that makes you think about something else, and that something else makes you think about something else entirely.
I was just reading Jenny Lawson’s book “Furiously Happy” (which if you haven’t read yet, you should look into why you enjoy depriving yourself of certain amazingly wonderful things) and she mentioned a list of life goals.

I thought about making my own, just for kicks, and then I did that thing where I took the thought further, and wondered if I ever had. I mean, I’ve make enough month-goals, and week & day goals (which are usually simply known as to-do lists and are pretty damn boring compared to a LIFE goal – I mean, think about it. Day-goal: – “send emails to people”. Life-goal: “Jump out of a plane above an active volcano.” (Not that I ever really want to jump into an active volcano, that was an example – but I DO want to go skydiving. AND learn how to fly a plane…”

Then I began wondering WHY I had never made any lifegoal lists, because it almost sounds like fun.

And then I remembered that 30 years ago I was working at Tower Video in Berkeley, and got a call from some Doctor who could have said “If you have written a list of life goals, it might be easier on you if you just tear that thing up right now.” But instead he said “We’ve gotten your test results back, and they came back positive for HIV antibodies.”

This was back in the years when everyone was still trying to figure out what it was – also known as “The years when everybody was dying”, at least in the less formal circles. I didn’t know much about it then, and chose to completely suppress and internalize what I just heard, and live until I died. The way I figured, I had 1 -2 years at most, and wasn’t going to waste time with dwelling on it. I mean hell, I was barely 19 years old. I had better things to do with the little time I had left.

I recently looked up some statistics, and found that 98% of people infected with HIV died within 18 months.

That’s a LOT.

Somehow however, I wasn’t one of them, and I still can’t really figure it out. I’m pretty sure that I’m not meant to – that it’s just something I carry with me forever to inspire me to do more huge things and say to myself “Maybe THIS is why I lived?” Hell – I’ll never know…

 

But I do know that for around ten years after I got that news, every few days I wondered when I would finally get sick and die. I’ll tell you one thing – it really fucks with any long-term plans. “Hey! Maybe I’ll learn how to… no, I’ll probably die before it’s done and that time will be wasted.” “Okay, by the time I hit 30 I want to have accomplished…. HA! Who am I trying to fool? I’ll be dead!

It’s really difficult to imagine your future, to prepare for it, to hang onto the dreams of who you want to be when you are absolutely certain that you’ll be nothing but a vague memory I people’s minds – if even that.

But for some strange reason that I’ll never be able to figure out (unless, of course, I do something & die immediately afterwards, saying with my last breath “OH. THAT’S why I lived!”)…

I’m still here. ALIVE – and even though there are days when I just want to hide under the covers in bed all day, and sometimes do – every second of this life counts.

Do something good.

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.