Wherever The Roads Take Me

“You’ve never been to Burning Man? Darlin’, you belong there. I wasn’t sure if I was going this year, wasn’t even planning on it – but now, I guess I am. I’ll give you a ride.”

New Orleans, 2006. I had recently moved there about five months before, the first time I had ever stepped foot in the city. Though I had seen it on the news a lot recently, nothing prepared me for what I was in person, stepping on the ground, smelling the decay and rot – but still, underneath that, there was something else it took me a while to put my finger on, a feeling… and then I realized what it was. There was a strength to the city, a spirit that even The Storm couldn’t take away. I fell in love with it instantly.

It was a strange path that led me there. My work with The Dresden Dolls had ended in Colorado, and with it the move to Boston. In thinking back all of these years later, I think it may have been a combination of a couple of things that prompted the email from Amanda. The first two were that The DD were going a slightly different direction, and also – I think The Brigade – what we called, and still call ourselves, were perhaps getting too big, too strong, especially the Boston chapter. Hell, we were even working on making it into its own entity, looking into becoming a 501(c)(3) performance group, renting a building where we could inspire & teach others.
And without question, one was my drinking. Though my work with them had never faltered for it, I was again trying to escape something dark & wrong inside of me by numbing it however I could. Still, I helped inspire hundreds of young people across the world to reach beyond themselves, to walk through their fears, to realize how beautiful they are. It was the first time I had ever, in my life, actually felt needed, felt appreciated. The first time I had ever felt loved.
Then everything I loved was ripped away from me.
Such is life. The Universe had other plans. I needed to pick myself up, to try to find the strength to keep moving forward.
In Colorado I found a good place to busk, saving up money I would need for gas. I would listen to the radio in my van at night, stretching out as much as I could in the back seat with Bean, my beautiful dog, caressing her as she rested her head on my chest and hoping sleep would come soon. It was then that I heard about Katrina and the devastation it left in its wake. It was September 5th, my birthday. I was alone with Bean, in our van, crying.

The next morning I started emailing people, and I connected with an old lover who was now living in New Orleans with her family, asking if there was anything I could do to help them. They were fine; she was safe with her family and out of the city. I asked if there was anywhere or anyone she knew of that needed help, and she gave me the contact information to a place in Austin.
“We need people. Show up anytime.”
I smiled for the first time in a week. Within the hour Bean and I were back on The Road.

Going through Kansas & Oklahoma, driving hard, Bean asleep on the throne I had built for her in the back seat. In the black of night there was nothing but the hypnotizing dashed lines on the highway, as if nothing else existed after the reach of my headlights. No signs, no horizon, no hills or turns. Only every few hours would another vehicle pass going the opposite way. 80mph and I would close my eyes, seeing how long I could keep them shut before opening them again in sheer panic. The rapid pumping of my heart helped keep me awake. I knew how stupid I was being, but only when I thought of Bean did I decide to pull over to the side of the road and rest for a bit. The morning brought sunshine and a beautiful view that stretched for an eternity.

19 hours later I was finally in Austin.

It was an amazing place. The “Austin Enchanted Forest”, a private 3 acre wild forest in the middle of Austin, art everywhere. They had set it up with donated tents, blankets, and everything else people who had to leave their home with next to nothing might need. I was “in charge” of welcoming people, showing them around, making sure they had everything they needed.
Bean was in absolute heaven. She had an entire forest to run around in and sniff, other dogs to play with, and every night she would sleep just outside of my tent. In the morning she would poke her head inside the flap if she thought I was sleeping too late and do this kind of “rrrroooowwrr?” thing, a cross between a growl, bark, and asking me to get the hell out of bed because it was time to play, to go on our morning walk in The Forest.

I lived there for four months in a 10’x10’ tent, going from volunteering for a couple months to helping set up and performing for their yearly “Austin Haunted Forest” through the month of October. The time I spent in Austin is another story, though.

~ ~ ~ ~ ~

“I’ll give you a ride.”

Burning Man was coming up fast. Raven, the kickass woman I had promised a ride to and I started preparing. We bought our tickets, figured out the route – there was just one thing we needed.
A van.
The van I drove there in had only made it that far because I needed it to, and it had done its job. Shortly after I got to NOLA when I needed to move it for parking and found that it had a flat tire and no spare, I decided it was time to let it go to the city. Considering that it was breathing its dying breaths, I wouldn’t have felt right selling her to someone who might depend on it. The next day it was gone.

My work was busking, doing street performance as a Living Statue. I was making good money, saving every penny I could for a van to get Raven & I the 2,200 miles to the Black Rock Desert. Once I had saved $800, I started looking…

Coming from the West Coast where vans & large vehicles are plentiful and cheap, I was surprised at how few there were for sale here, and how expensive even the crappy ones were. I couldn’t figure it out – and then it hit me. I understood.
This is hurricane country. People here need to regularly throw everything they can grab into a car and bug-out, and the bigger the vehicle, the more space for family & things.
I hadn’t thought of that. Time was getting close to our planned departure.

Shit.

I worked extra hours, every day forcing my body to the limits of what it could stand, standing perfectly still. I took the suggestion that a nurse whispered to me one day and started taking aspirin to hopefully prevent blood clots from forming. At night I would look on craigslist for a van, widening the search, increasing the amount I could pay by working the extra hours.

It was grueling, painful, exhausting, but I had given her my word. I wasn’t going to let her down. Far too many people are so full of empty fucking promises, and I won’t be one of them. Hell, if I couldn’t find a van I was ready to buy her a flight to Reno – but hopefully it wouldn’t come to that.

Every night as I laid in bed and every morning, I would do a manifestation meditation. I would picture Raven & I driving up the road to the front gate of Burning Man, blasting music and singing along in a plain white van. In the visualization my window would be down all the way, arm resting on the door as we laughed triumphantly.

The days continued. Still no van. I refused to worry, and just *know* that it would work out.
Well, maybe I worried a little bit. I mean, c’mon, I’m at least *somewhat* human.

Then, finally. Less than a week before we were planning to leave, I found a van for sale in Baton Rouge, at just a tiny bit under what I had saved – and get this: It was the exact van I saw in my mind; white, plain, even a Ford. And it didn’t have a driver’s side window at all. I guess that when I saw it in my mind, every time with the window all the way down – maybe I should have visualized at least a little of the window there. Still, the Universe had given me *exactly* what I was asking for. It likes having fun with me, I’ve found over the years.

The van wouldn’t idle, the driver’s seat felt like it was one of those things in kids’ playgrounds – the animals with the big springs under then that you sat on and leaned every which way, then sprung back up headed in the opposite direction. It felt like the seat was trying to throw me out the window with every right turn I took.
I managed, with the help of a friend following me, to limp the thing home, then spent the next three days making it not only stay running, but idle smooth and strong. I ripped out the driver’s seat and fixed the base of it, checked lights, brakes, tires, fluids, everything. It would get us there. We had a van. It didn’t have a license plate, so I made one out of cardboard that looked almost real, if you didn’t look *too* close.

Then, something unexpected. An email from the seller, a nice lady when I met her. She told me of her uncle – Conrad, or “Uncle Connie”. He had lived as a homeless drunk in New Orleans, and after most of his life spent that way had finally gotten sober. He had bought the van to fulfill a dream he had – of driving West to see the ocean for the first time. Unfortunately, he had died before he could make the trip. Before he could make this dream of his – his only dream – come true.

In her email, she said that when we were talking and I was telling her my plans with the van, she felt something in me that reminded her of her Uncle Connie. She said he had a wonderful heart, a warmth and kindness to him – and she told me how much she had adored him, feeling so fortunate that they at least had a little time to spend together after he got sober. He would have loved something like Burning Man, she said, after I explained it as best as I could to her.

“This is going to sound really strange, but… would you mind helping him realize his dream? Would you take his ashes with you? Take him to the Ocean?”

As Raven & I made our way across the country, we took the time to enjoy it, pulling off to sit in silence and look out over beautiful, expansive views – and I would leave some of Connie there. In kitschy tourist spots, I would leave Connie. Native American craft shops, roadside diners, places that felt, in their way, sacred. Connie was on the road with us, living his dream.

Well, not really “living” it, being as dehydrated as he was – but at least doing it.

That year at the Temple of Hope, I left two silk bags of ashes – and then finally, on a cold overcast afternoon in San Francisco, I again poured two different piles of ashes on the sand, just a little bit below the tide line.

One, of course, was Uncle Connie’s. The other ashes were of the best friend I have ever had.

I stood there for a while, alone and holding my coat tight around me and silently crying, as I watched Bean’s ashes being taken out into the heart of the Sea.
She had always loved running in the ocean.

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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.
 

 

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.

The Complications of a Kiss

For hours we talked. We talked of the Sun & the Stars, of everything around & under them. We talked of writing and authors, of our pasts and present. Of herbs and addiction, of friends and difficult relationships. We talked of romance. She said she was a hopeless romantic, I told her I was a hopeful one which made her smile. She talked about lovers, of past boy & girlfriends, but not having anything current to say from my side, I mostly kept quiet.

I looked into her ice-blue eyes and I could only think of clichés to describe them, and worried about a piece of the glitter surrounding her eyes falling into one. I found it kind of dorky and cute the way sometimes she stifled her laughter by pressing her tongue against her upper lip. We talked outside of time, the world moving on around us.

Although we could have sat there enjoying each other’s company for much longer, the growing soreness in our asses had something else to say about it. It was time to stand, to go. It had been a lovely time together, getting to know each other, finally meeting a decade after she had first heard my name from a mutual friend.

Instead of parting ways outside the café, we sauntered down Market Street, side by side weaving around the people & construction, enjoying the continued conversation & moving slowly, more as if we were strolling through a park on a warm spring day than in the rush of San Francisco as it left work & headed home. As far as I could tell, we were the only ones there.

“This is where I turn. I’ve had a wonderful time.”
A warm hug. I answer, we go our separate ways. On the way home I walk faster, at my normal pace, the hint of a smile playing on my lips as I hope that it actually will be soon, and, newly inspired, think about what I’ll write.

At least that’s what I expected to happen, but we kept walking, taking now about hidden treasures in Golden Gate Park. She says she’ll take me to the “Faerie Door”. I imagine her being able to take me through it to her true home. Now walking through Civic Center Park, I begin to wonder where she’s going. My mind starts spinning. Maybe she has an errand to run that just happens to be in the direction of my apartment. Yeah, that must be it. If it were ten, fifteen years ago, if we were walking away from a bar a little tipsy, if pretty much everything were different, then I could accept that she might be coming home with me – but these days? A lovely woman I just met coming home with me? What a silly thought. That just doesn’t happen to me anymore. She must have someone else she wants to visit close to me. Maybe she wants to get some Vietnamese food to take home. Quit having such foolish thoughts, kSea. You know better.

We wander up Hyde Street together, each step getting closer to my home and she is sill by my side. I start to get nervous, confused, trying to remember how to do this… this boy/girl thing. The game, the ritual. I can’t. Hell, the last lover I had was three years ago, and I don’t have the slightest idea of how to read all but the most blatant & obvious hints anymore – and those I’d likely even have trouble with, looking around the room for someone else and wondering if they were actually directed at me.

I need to calm down. This could be, and most likely is, entirely innocent. I don’t know what I’m thinking. Really. I have no idea.

We turn the corner to my apartment, which is now about 20 yards away. A friend of hers once looked at an apartment in the building next to mine I find out, and then I’m opening my gate. I apologize beforehand about the mess & dog hair everywhere. I refrain from saying that I wasn’t expecting company, thinking it might come across poorly and accidentally give her the idea that she isn’t welcome & make her uncomfortable.

I quickly grab the clothes off of my couch & toss them in the walk-in. “That’s your closet?”
“Yeah! I have another one right there.” That’s it, kSea. Suave as ever. Christ.

She sits on the couch without asking or waiting for me to say anything, and I like that. It makes me feel like she’s comfortable here. I offer her anything, and thankfully she’s happy with water. I can do that. I have water! I pull my finest ex pickle jar out of the cupboard for her & make sure it’s company clean, not just “me” clean. It passes. Must have been a good day when I washed it.

When I come back into the room I notice that she’s taken her hair down and nearly drop her water. It’s beautiful. She’s even more beautiful. I sit down beside her, leaving a good foot & a half between us. It’s a small couch. I mentally take the word “loveseat” out of my head.

The talking continues, she likes my knives (are you fucking KIDDING me?) and says she used to have one exactly like this one. We talk about knife throwing. (I can’t even make this shit up. Dear gods.) I tell her stories o fme as a child, crashing my mom’s car into our house at 11, setting my mattress on fire at 8. We laugh. Compare notes of families, talk about adoption & blood.

I’m terrified. This is what I’ve been doing my best to avoid every time I went out, and doing it very successfully for over three years. With clothes on, I look okay, but I’m reminded at the times I have to look in the mirror what I look like without them. Scarred & discolored legs, the umbilical hernia looking like a fetal twin sticking out of my abdomen, the inguinal hernia less horrible, but at the top right of my pelvic bone. Even if you know what to expect it’s hideous. I try not to look at it unless I have to. I don’t want anyone else to have to.

Even as rusty as I am, I know I could have swayed our conversation with a couple questions to a place where I could have found out if it was alright to kiss her, if she would allow me to, if she wanted me to… and I would have loved to. But everything inside of me wouldn’t let it happen for fear of the possibility of it going further. After some time she puts her hair back up. I feel like an idiot, just wishing I could get past all that’s inside of me. A warm hug, and we take the elevator downstairs. I bring Ruby so I have a reason to walk with her just a little more.

My Dr. had called me that morning, telling me that the surgeon still won’t agree to do the surgery on my hernia’s, now two instead of one. He says that there’s a 30% chance of complications due to the ascites (fluid retention) in my abdomen, but I can’t help but call bullshit. Though there may be some fluid, I work hard keeping it as minimal as possible with teas & herbs, and if he did do the surgery I’d work even harder, agreeing to even take the prescription diuretics they want me to. But still, he won’t. He’s afraid, he’s concerned, and he doesn’t have any idea how strong my will can be to live – when there’s something to live for.

It’s been nearly three years since I’ve even kissed a woman romantically, hoping that one day, with all the fighting to get the surgery done, he might give in – but still, there’s that 30% chance that I could die hanging over everything, hanging over a life that I now don’t even have the morphine to mask the oppressive loneliness.

What he doesn’t seem to understand is that, as my will to live fades, the chance of dying without the surgery keeps growing – with each memory of a kiss that never happened.

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.

 

almost always tomorrow

3/24/99

because there isn’t anything

that makes sense anymore

 

because there isn’t anything

that i have to make me smile right now

and the pain of my impatience

has control over me

and i feel

futile like nothing will ever

be complete

and i hate it all right now

and i hate you all

right now

and fuck this place

and fuck this job

and fuck this morning

and fuck you people

and fuck this page

fuck the moon

fuck the sun

fuck the stars

fuck this life of nothing from nothing and

i would love to open myself up

and feel this poisoned blood

leave me

watch as it stains the sheets

a final crimson

watch this morning

and everything else

 

disappear

 

as my eyes slowly close

 

but wouldn’t that be

just so fucking

redundant

 

and what if tomorrow is just

 

a little bit

 

better

 

3.24.99

i look out the door to the gray sky

same as it is inside

when there is nothing left

and nothing matters today.

 

i look to the gray sky

the color has faded from this boy

dead eyes and an empty heart

and nothing matters today

 

i dream of the peace in draining

on top of my bed, eyes slowly close

and i feel as there is nothing left to give

i’ve never been able to see it so clearly.

 

a dream of over and done with

i just don’t care anymore

and it doesn’t matter who she is

i never knew her anyway.

 

erase forever and always

never have they made much sense to me

when the beginning of the story is nothing but a myth

the author gets to choose his own end .

going down

It was new to me, this pain, and I freely admit I was a little bit more than concerned – though doing my best to keep worry out of my mind. The feeling was like someone with long, jagged fingernails had reached into my intestines & stomach, grabbing them, puncturing and twisting until the muscle fiber began to rip & tear like the stalk of a vine wrenched past its limits. That was the first day, this past Saturday, but thankfully by the evening it was only a dull pain – most of the time.

Sunday came, and the pain was fresh, stronger, & accompanied by my stomach expelling all inside of it, though not much could be – I had eaten very little the day before. Still, with every few small sips of liquid my stomach somehow found that on top of three or four times the amount to purge, though I don’t know how it found it anywhere.

The thought occurred to me that my hernia had finally torn open internally, the intestines had twisted & were blocked, sepsis had set in or a multitude of other things that can happen. Not  knowing what it felt like or how quick death could come, deciding that if this was the time I would let it come, I decided to forego the trip to the emergency room. Hell, I don’t have the money for the bus anyway so I’d have to call for an ambulance, and I’m just not into the bullshit of everyone knowing my business that that involves, especially if it turned out to be nothing to worry about. If it got to the point where I had to post asking for a ride on Facebook I would, but more than likely the hospital would keep me overnight which would mean having to again ask for someone to care for Ruby. I wasn’t willing to be let down again so soon.

I thought about all the morphine I had in my drawer across the room, then thought I shouldn’t think about that. Too easy. The pain will go away. The pain will go away…
Gods, I hope this pain goes away…

Day three: Monday.
I still haven’t eaten anything other than a bowl of cereal and an artichoke since Saturday morning. I drink what I can to stay hydrated. Weak, tired, and hoping something left in the kitchen appeals to me, hoping that something might stay down, I pry my body out of bed while holding my intestines inside of me. The pain is less & I’m grateful, but at times it still crawls out, breaks through. Still, I feel better. Better than yesterday & the day before. I decide not to call my doctor. I have an appointment with him on Friday anyway.

As usual I weigh myself, keeping track of where my weight is heading. It gives me something to work with, something to determine if my body is beginning to retain fluid or if it’s doing what it should. I look at the glowing digital number on the scale, telling me that I’ve dropped a little over 10 pounds in the past three days. I’m not surprised, not concerned. Even if there was food to eat it wouldn’t stay down, but I feel the hollowness in my stomach, feel the energy drain out of me. I fantasize about chicken soup but don’t have the money for it. If I did have money, I would need to buy coconut water before anything. It all comes down to priorities.

It’s much more than the lack of food that’s making me weary.

I finally fell asleep at 6am, wake up a little after noon. Today I almost feel whatever normal is, though I have little to go by these days. I’m making an educated guess. I don’t think that normal people feel a normal like this.
I vow to myself to finally finish this post I get out of the house, walk somewhere with Ruby. I wish I had the time strength & energy to just keep going, leaving everything behind. Find a forest, make a shelter, learn how to hunt with my bow to eat & feed Ruby. Just go away; paper, pens, and only what I think I’ll need. Find a river, sit in it for a few months and wash all of this away.

There are many things I would like to do. In none of them do I see this apartment, these streets I’ve walked on & woken to for nearly five years now. In none of the things I see do I feel this way. In none of them this deep melancholy.

It’s hard to believe in anything anymore.

I’ve forgotten how to believe in me.