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.

Do you know what it means…

As I weave the rings together, I half-watch various TV series that I remember enjoying, and this time, it’s Treme – a show based in New Orleans, centered around the music of the city – and the pain & frustration that Katrina left in her aftermath.
The first show of the series begins three months after The Storm – one month before I moved there, and the first time I ever stepped foot on the magick of its soil.
I find tears coming to my eyes frequently, as I remember the amazing people, the fun & friends I met that remain in my heart to this day, and the spirit of the city.
I had never experienced a city stronger, with more resolve, nor people with more love for their home.
Until I moved there, I had never truly understood what that word meant – only that I had never had one. I chose to call it mine shortly after I moved there, and in a strange and not so subtle way, I could *feel* that it accepted me into its arms. It loved me back.

I performed on the street as a living statue while living there, and my most common pitch – one of the best ones in the Quarter – was on Decatur Street in Jackson Square Park, directly across from Cafe’ du Monde.
I have many funny, sad, & beautiful stories from those months, one being a NOPD officer who had grown kind-of friendly with me in passing, and one day, as a group of about 15 tourists stood around me gawking & ignoring my tip box, I hear, seemingly over a PA system: “Put. Some Money. In The Box!” – and turned just enough to see him sitting in his car, smiling at me. I almost laughed at how quickly they reached deep into their wallets & pocketbooks, but couldn’t break character.
Another day there was the child being dragged along by his mother like a piece of old luggage, on her way to the next tourist shopping destination. She had him by the wrist, his arm stretched as far as it would go as he tried to look around at the people, the horses & carriages, and all the things that a young boy should be able to take the time to explore, to wonder about & ask endless questions to an annoyed parent.
As they were walking by me, the mother didn’t look twice in her one-person shopping stampede – she had the blinders of a well-oiled consumer, but the *boy*… the boy, he noticed that maybe something just wasn’t entirely right with that statue, with it’s white skirt gently luffing in the breeze, scuffed shoes… there was something that caught his eye, and as he looked up at my face, I caught his with mine – and I winked at him. It was something small – I just wanted him to know that *I* saw him. That he had a friend.

His jaw dropped and eyes popped open to near the point of being nothing but a caricature of a lazily carved pumpkin, and as he realized his feet needed to keep moving due to the ignorant machine of the relentless force dragging him along, he jogged to catch up & ran a little ahead so she might see him, remember he was there and listen as he said with the hope of her hearing him – “Mom – there’s someone *IN* there!”

A couple people in the series are street musicians, and as the camera switched to the other person, I saw that they were standing exactly where I did, and according to the show, exactly where I would be just a little over a month later.

This time, my eyes weren’t deep enough to keep the tears from falling.

Gods, I miss New Orleans.

NOLA.Statue

Into the Storm

Sitting in my bed, comforter pulled up to my waist, warm and… not happy, not blue, but if I had to think about it (and it seems I need to now that I wrote that) – feeling… what? Perhaps something of a positive indifference, if that makes any sense.

Grey skies, scattered rain & the wind howling through my windows which I intentionally leave just a crack open for exactly that reason. I like the feeling of safety & warmth inside, the storm not able to affect my life, as much as it beats against the barriers that surround me.

But I also miss the exquisite storm, the way my blood pulsed feverishly, passionately through my veins feeding off of the uncertainty of every day. I miss the directionless path, trusting that it would take me where I needed to be and it always did. I miss the way the words would rip themselves out of me, tearing me apart & puttin me back together like a puzzle that always found a place for the extra pieces.

I miss the feeling of the feeling of the road under my wheels.
I miss the fever.
I miss the storm I once was.

The wind screams & moans through my windows, calling me, summoning me.

It’s time to join it.

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.

 

wings

Lifetimes ago, I called to you, called, and finally

you looked, noticed how my wings glistened with light

and reached to take hold of my hand.

You were blind to how these wings were scarred, wounded, broken,

or you just didn’t care. You saw something that you thought you could fix.

You reached down, down far – and almost fell

almost fell – for me. Some things I just won’t let happen. See where the scars come from, see why I use what I do for paste now, and don’t judge.

Out of bourbon and fire, fire and ashes, ashes and dust, dust like thousands of words and the tears of joy and sorrow that created them, out of these things I make my paste. I make my paste out of the same wind that carries them away. I make my paste out of the strength of the blood of my heart, of mine, not yours. You want me to be my best, my best for you. I want to be my best for me and only that because that is what stays. I know me better, I know what I want I know who I am and who I will be and that is not your creation. Even in your love, it can only be made by mine of myself. Only I can make me, again, and again, and again – and I do. You haven’t known me long enough to realize this. Let me be and love me and let me always become. Try to mold me and I crumble in your hands. Love me and let me be if you’re strong enough.

If you’re strong enough, I will be stronger for both of us.

Nothing is easy.

 

It’s been three days since I last took morphine. I am winning. I am a warrior, and this is the current quest. I have many.
Outside my window the clouds block the penetrating sun, offering a spattering of rain from time to time. It’s not enough, not close to a storm – but for now, for me, far better than the hellish cheer of a sunny day.

The words don’t come easily today – my mind is getting in the way of my heart and my heart is from where my words flow. Too many thoughts, too many concerns, too many bills and not enough food – but things will work out. I haven’t starved to death yet – only gone hungry. I think maybe that’s worse, as when you’re alive, you’re aware that you’re hungry, whereas if you’re dead – well, all worries are gone. Simple.

Still, I like this being alive thing. Even if I occasionally moan & wail about it, it’s not half bad most of the time. Just… lonely.

I want to tell you stories. My stories. These stories will shed light on part of my life, though leave the rest in darkness – as they are in my heart.

Is memory a product of the mind or heart? Taking away all we think we know, don’t some memories cause your heart to ache, others to have it soar? I know better, but at the same time I realize I don’t. What do we really know? They say the heart is only a muscle, beating 101,000 times a day, pumping until it stops; but the mind, our subconscious, controls it all – every tiny thing we do, like fingers knowing without looking where the keys are as we type, knowing what letters to write as we scratch paper – but what about love?

We don’t feel love in our minds. We bleed it, the one we love pumping through our veins, our hearts growing, glowing… then breaking. It is a physical pain. We feel it.

These will not be love stories, though love is in them. Or better said, love is just outside of them, circling, searching for a way to break in.

I’ll begin tonight.