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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and I rejoice

The San Francisco heat wave, our yearly week of Summer, finally breaks & I quietly rejoice. I am not made for hot weather – or at least hot weather where there isn’t a clean ocean or river or lake or large puddle to go swimming or stomping in.

September is knocking on the door of October, and if I had to choose a favorite, I think October would be it. I remember the way some of the places I have lived changed their color, the reds & oranges & hints of stubborn green flooding the air & ground as if the world was on fire, sacrificing itself in some sacred way to become the stark, haunting & beautiful bare branches of Winter.

The energy of Change is in the air. It finds its way into my blood – and my memory.

Twelve years & four days ago I decided to follow my dreams, whatever they were & whatever it took. Shortly after I was working with The Dresden Dolls & my life changed forever.

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It was on this day that my beloved Bean was hit by a train in Austin & killed, a few hours and eleven years ago.

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Ten years less a week ago I received an email from Mike asking if I was interested in becoming a permanent part of the Vau De Vire family.

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Six years & eight days ago I first stepped into the hospice, walking in easily enough but rapidly dying one week later as my body began to shut down.

Five years & a month ago I did what the doctors thought impossible, and walked out alive.

Four years & a month ago I talked with my Birth Mother for the first time in my life.

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Nov. 23, 2013

Two years & a week ago I first spoke to my Birth Father, who until shortly before that had no idea I existed.

And now I feel the story of this man should – will – change again. I’ve already begun to kick a nine-year morphine addiction & plan to have that entirely behind me in less than a week… yet I feel that is far from enough. I want more. Monumental change. I thrive on the shit. It’s my lifeblood, my constant need. When life gets too comfortable, too predictable, I have a bad habit of stepping into a dangerous dance to bring back, to summon life’s music – and far too much is dangerous these days.

The dreams I still have, but the energy to reach for them is as scarred as my liver. I will keep moving forward, doing my best to rip through the barriers, the walls both inside & out. Both physical & mental.
The failed Kickstarter shook me. It hit hard and I fell.
It’s time to rise again. Dust myself off and move on.
I will keep moving forward.
I will live to make my dreams come true.

I see the sun shining outside, feel the sharp chill of the breeze that cuts through my window. Today will be cooler…

and I rejoice.

Bones: The moment that I became

Wandering through my writing from the day that turned everything around – the moment I made the decision not to wait and hope for my dreams to come true, but actively make them.

I clearly remember when I was offered the choice. I had been laid of from my job a few weeks before and was overwhelmed with stress & worry – about how I would pay rent, how I would feed Bean, how I, myself, would eat.
Somewhere in the background of my mind & spirit I was happy to lose that job, as it had turned into everything I was anymore. I couldn’t have a simple conversation with *anyone* without looking solely for that moment I could turn the conversation in a direction that was focused on finding an “in” with their building manager at work…
I wasn’t paying the game anymore. I had become it. I dressed in $700 Donna Karen suits (costumes) –  and damn, I looked good in them – but regardless of how good the outside appeared, the inside was vacant, save for every day and sleepless, stress filled night, thoughts of how to become better at my job… a job I no longer wanted, but was too afraid to leave.

Too afraid to give up even that small bit of security…

In a moment of clarity, I listened to what was being suggested. This is what I wrote at the time. A couple short weeks later I was working with The Dresden Dolls in a position that seemed to be designed entirely for me, and head-over-heels in absolute love with life. Now, as I look back & see how everything from that moment has fallen so perfectly into place to get me where I am today, writing the story of an incredible life that began at the very moment written about below, I can’t help but smile at how beautiful everything is.
And I am still completely in love with this life.

November. 2004

Oh, the things we suppress. What is squirming around inside of us? What do we have that could completely stand the world on end if we let it loose – gave it breath – acknowledged its life?

 

No. Can’t do that.

 

Everyone resume the game they’re playing. Everyone pretend that nothing is happening, go about your business, and roll your dice. If you work at it hard and long enough, really put your nose to the grindstone, follow the rules, get to work on time, deny the pain and the madness and the ennui and completely lose all that you are in search of the “American Dream” that they told you to dream, you just might die with the most toys. You just might win.

 

Fuck, I’m in a strange mood.

 

I like it.

 

 

Shit. I’ll never find a job this way…

 

 

But see, there’s a catch.

(There’s always a catch.)

 

The things I want to do. Learn, travel, experience, grow, give, help, inspire…

 

Eat…

 

It comes with a price. It all comes with a price. Many things don’t necessitate one in a monetary sense, but still, many do. It’s a matter of survival. We’re caught,

 

but not defeated.

 

All there is, is to shine as brightly as we can, never losing sight of what we need to evolve. Never giving in, never handing our lives and our own dreams over wrapped in our soul in order to make it one step further to a lovely little retirement in geriatricville. Never succumbing to the temptation of personal drama in order to feel substantiated or validated – or just in order to feel. Maybe that’s what happens. We lose ourselves so completely in trying to be a “success” that we need to create situations around us simply to bring us back to life, to remind us that we’re human.

 

Fuck that.

 

Love. Breathe. Wonder. Explore. Dream. Go back to the eyes of a child. Look around and, again, and see how much beauty there is in everything with this remembered knowledge. You’ll see how everything shines so incredibly brightly, and how it’s all a part of you. You’ll walk down the street with a warmth and subtle smile, knowing that this is the only thing that truly matters. Try to remember it, because if you aren’t careful, it will be taken away again, suffocated in the mundane. Do everything you can to keep it, and give it away at each and every opportunity. Eventually, you will know. The language of your story will become true, you will repair your wings with paste and bandages, and learn to fly again.

 

That is success.

It is time to follow my dreams, regardless of how terrifying it may be at times, or the false sense of security that I must give up to do walk this path. I have lived far too long as someone else’s pawn.
It is time to live for me, to remember who I am and do what I can to help, to give, to remember how to love myself – and in doing so, perhaps inspire others to do the same.

Inspiration…

SO… this one goes out to *everyone* but especially #thedresdendolls & #thedresdendollsbrigade , including Amanda Palmer & Brian Viglione, if you’re willing, able, and OH so kind to offer a few words…

I’m writing “a brief history of me” for an ongoing, educational & illustrious freelance gig which involves interacting with LOTS of people, influencing, inspiring, learning from and teaching them. Things that are right up my alley, and perhaps why I have been blessed with so many challenges in this life – to truly KNOW what I’m talking about…

So – have I, even in the smallest way, inspired or influenced you in my writing, my bajillions of personal emails, or my engagement with you?

If I did, please let me know! I would love the inspiration, the reminder of who I *can* be, the strength to write the best fucking words they have ever felt.

I want them to beg me to work with them, and they will – but I would love a bit of inspiration from *your* voice to make mine stronger.

This job is a game-changer in my life. It is what I have fought so fucking hard for: Not just a “job”, but the continuation of this exquisite journey…

Please help me show them how much they need someone like me – and THANK YOU!

~ kSea, Casey, QuaySee, QueSi, etc…

Into my own hands…

After so long

so long

so goddamn long, it’s hard to come back, but the nagging inside of my head, inside of my heart, the everyday need grows, expands to the point where it consumes every thought of before this or after that I will write, so much to write, it’s been so goddamn long and the need consumes, compels, would complete me if only after this or before that could be the perfect time because there is so much time I could write anytime the perfect time must be sometime but where or when?

Screw it. NOW 2:41 Monday January 31st and begin where? Where? Why is time a place? When. NYE, The Dresden Dolls at The Warfield Theater, it takes all I have to get ready; the pain slows, makes me question what I’m doing; fight like hell to get my boots over swollen feet, feel them tear the soft stretched flesh at tender ankles but I’ll deal with that later, because not only do I want to go to the show but I left no room to get out of it, no maybe or if or depending how I feel – I said that I would be there, & a ticket is waiting. I promised. Thank the gods for skirts. Grab top-hat cane & camera and make my way to the door slowly, slowly, carefully both feet on each step as I’ll be damned if I’m going to take the elevator to go down one fucking floor…

The show was fantastic, of course, but best were the friends I ended up watching it with by far, and a couple others saw while coming in. So good to feel alive again, to feel alive because of them, them, reminding me that I still exist, I still exist to smile and laugh and love and take months away from life in a beautiful care facility where I can focus on getting physically healthy, but gods, it’s full of mundane, inane and uncreative, barren minds but life is still outside the door with the right people. In this place I realize how incredibly fortunate I am – how incredibly *spoiled* I am to have such people in my life.

I  turn around in our semi-private area and holy SHIT pull myself together to suppress the surprise, a friendly smile & nod to Neil Gaiman (“Hey!” [poke poke] “that’s Neil fucking GAIMAN!!!” to one of our krew standing near who shared the same giddiness and yeah I thought I was immune, have hung out a bit with Lemmy, a lot with Daniel Ash but ends up – it takes an *author* for me to finally be star-struck. Who would have thought?

After show the same wonderful friends and more; some lovin’ from Amanda, brief chatting with Neil, that & morphine helps transcend the pain, keeps the tears from the pain at bay… an exquisite evening with absolutely wonderful friends… & the best NYE on mental record.

The writing has begun.

Finally, the writing has begun again – but now I’ve been up for too long, fighting the usual shitty night of sleep. Half of this was written with one eye open; it’s now 4:13 and time to close both for at least a brief time, but at least, the very least…

The writing has begun – and it’s about friggin’ time.

2-6-11 – The Medical

Gods, I hate playing catch-up. Writing these days however can be quite an effort, & has everything to do with timing. As much as the intention is there, as much as I want to spit out of this head of mine keeps growing and growing, it’s just not that simple – but I need to. I need to get this down, as not only do I want to remember it as clearly as possible, butThere may be a chance that it might help someone, and with the way that Hepatitis C is being named as the new epidemic, is now considered even deadlier than the HIV virus & easier to contract yet remain undetected for years… I need to. 

Now, past the hand cramps & fluid that blisters & seeps out of my hands making them & the rest of my body itch like f-ing crazy, past the exhaustion that makes it feel like my body is filled with liquid lead & lays me out for days, I believe I’m finally able to at least begin this section. I’ll do my best to curb my anger towards Western medicine, but in a way I owe its ignorance a bit of gratitude, because if I kept believing in it and feeling that what they were doing was the only way, I never would have taken matters into my own hands, researched & ordered herbs & supplements, or simply listened to my instincts & my body much, much more closely.

This will be the documentation of my personal fight to clear the virus from my system using alternative methods ranging from Chinese medicine & acupuncture to other well researched systems – as well as the occasional bizarre “treatment” that I came up with myself, one of which I’ve already tried with extremely positive results. I am, after all, my own perpetual experiment, living with it every second of every day, and try to figure out ways to deal with this and manage it through most of my waking hours.

A brief & recent history – not too long ago I was put on the interferon therapy for three months, (the whole shebang, if they are seeing the results they want to, commonly lasts a year but I’ve heard of it extending far beyond that)  thankfully however, they didn’t get the results they wanted with me and so took me off of it – perhaps one of the best things that could have happened, because as the side effects that I experienced were very minimal compared to others, it was still fucking hell – not only physically but mentally as well, as one of the ones that hit me hardest off the long list was “irritability”. Let me tell ya, “irritable” doesn’t even come close. There was an unjustified anger and hatred for pretty much everything that I came in contact with – or worst of all, people, friends, that I so much as *thought* about. No one was safe from the completely irrational things about people I conjured up in my head. About *you*, more than likely, if you’re reading this and we’re friends or something close. It was not a good time.

Then the edema started hitting, and hitting hard. My nurse practitioner did what he was taught to do, and prescribed some serious diuretics – which didn’t work, so he prescribed other ones on top of those which were just as ineffective – however they *did* cause my blood pressure to drop dangerously, so what to do?  Throw more meds at me for my blood pressure. By that time I was in here so they took vitals every morning to check my BP, meanwhile further harming my already fragile liver & continuing to shovel the drugs in my mouth – and me, like a good little trusting lab-rat, continued to take them… until one day late in December when I realized that I had had quite enough. Quite. Fucking. Enough. If what they were giving me wasn’t simply completely ineffective, it was harmful – and of course all of these needed to be processed by my liver, putting a ridiculous and completely unnecessary strain on the one thing that they were supposed to be focused on helping. Something snapped. Something needed to change. I started doing research – tons of research – & thanks to some fucking incredible people who sent me money over the holiday season, I was actually able to BUY the herbs that looked the most promising. Some I still take because I believe in them &/or have noticed a slight difference, some I don’t as they didn’t seem necessary, and every penny counts. I began those in early January, (and thank the gods I’m getting up to date because I’m getting kinda tired) and the uber-awesome bonus, thanks to Whittles was able to get some regular acupuncture with Renee lined up, which began mid January – with TONS of more herbs, tinctures, potions & brews. Thankfully I was able to pay for all this at the beginning of this month, but holy crap – with all the books, herbs, and arsenal I use in the fight to get healthy – my disability check, save for literally a buck & change, is gone for the month. I have an idea to make extra scratch to support my herb habit once I get a bit more healthy & mobile, but until then… shit. OH – okay, some of it went to the pawn shop too, so I could get my bow out before they claimed it as theirs, as it’s been sitting there for months.

The good news – I’m already feeling a positive difference, and for the first time in months due to something new I tried – I HAVE KNEES, & almost have ankles! The edema is still a huge problem, but there is something I use to relieve the pressure when it gets too much & I can’t walk without extreme pain; essentially it’s this rotary-thing with super sharp needle/spikes on it, and it *really* helps get the fluid out of my legs, at least for a bit. I tried a different technique a couple baths ago (baths are more exhausting projects & experiments than times to relax for me) and instead of the one previously where I hit the spots on my legs with the most pressure, I just ran it really lightly over my entire calf, ankle, & feet – the skin is stretched tight enough that I barely use more than the tools own weight to be effective, & it’s also a thousand times  safer than scratching. First comes a few drops of blood or a little more, then the fluid which is essentially clear – but holy crap, going over my entire calves really was much more effective than I could have imagined – and some weeeeiiird stuff came out. My acupuncturist (who condones this by the way, as it stimulates the channels) said that it probably was bile. Of course, I was nice enough to take pictures for your enjoyment.

Okay, I’m done here for now, & though there is still much to say – but I still want to be more regular with my writing. If you don’t hear from me for a week or so, and give a damn, throw an email rock or two at me to wake me up. There’s lots more I want to say about *this* place, where the nurses had to fight to extend my stay – otherwise I would have needed to be out today (aka the 6th, as I don’t know when I’ll get this to the interweb).

Regardless of what it takes, I’m fighting like hell until it’s gone. Completely. The other option? Death. The Hep-C, Edema, Cirrhosis (scarring of the liver tissue) – I need to get rid of this shit. Cirrhosis is the most difficult one to repair though it can & HAS been done with proper care, treatments & herbs. When the liver gets to this stage, the Western Dr.s mantra is “Transplant”, which is ineffective 100% of the time. It just ads more time, and due to the drugs necessary to accept the new liver, cirrhosis reappears within five years in 25% of people who hope a transplant will help.

I have my work cut out for me. Somehow, I’ll figure out a way to afford not only what I’m already taking, but some wonderfully promising other things I’m finding out about in a new book that I’m devouring about one person of many who western medicine had failed and, through trial, error, and triumph, was able to clear the virus. The messed up thing is that I’m under pressure to show a dramatic difference while I’m here, as right now I need what they offer – and am blessed as hell to have it. Trying to continue this anywhere else would be much more of a struggle than I need, but regardless, I’m going to fight this like hell, keep dreaming of coming back to the circus, and getting on that damn road!

It’s now 6:30am & I’ve been up all night studying how to stay alive and writing a working conclusion to this.

Done.

And remember – this is automatically posted to Facebook from WordPress. if you want to contact me, email me at ksea@culturefluxmagazine.com – do NOT try to message me on Facebook. I’m never there, loathe it with a passion, & won’t answer.

Thanks.