Almost easier

I listen to classical, have something calming in the background to write, something so that I don’t have to hear the whistle of the train. It seems that no matter where I am, regardless of how faint it is, I always hear the train now, and take notice.

I repair the necklace that I made out of her teeth, the smile she always wore that now, I do.
Five years. It doesn’t so much get easier – there are still triggers; but it has found  a different place in my heart, one of warmth and fondness instead of pain. Now, a subtle smile crosses my face as I recall her beauty, an we again smile together.
Her ashes still rest by my bed, and the memories of those days in The Enchanted Forest, both extraordinarily beautiful and full of anguish, will remain in my heart.

I miss you, Bean.

I swear, they pulled more than just teeth…

So, they didn’t pull all of them out as planned.
I’m left with the teeth that remained on the bottom, and nothing on top – which seems to be as effective as no teeth at all.
I swear though – it felt like they were pulling a whole lot more than just teeth out of my head during the procedure.
I had a different dentist this time, an all-business Indian woman who just was not messing around.
It began normal enough, only a slight bit of trepidation, the usual, and then it was down to doing what I was there for – and MY FRIGGIN’ GODS, the pain was so far beyond what I was expecting that they almost had to hold me down.
As she rammed what felt like a 00 piercing needle up into my palate over and over again, feeling like the needle was going up through my sinuses, though my eyeball and into my brain itself, the muscles in my entire body contracted so much that I have little doubt that I was pretty much on my elbows & heels alone while laying in the chair. It was… indescribable. Indescribable, but thankfully short.
After the injections were over and they walked into another room to give the pain killer a chance to take effect, I lay there with what must have been a look of terror in my eyes, tears streaming out of my right eye, and… whimpering.
Ultimately I guess I’m grateful for the initial pain, because after that there were two instances where the dental assistant actually had to hold my head down as the dentist wrenched back & forth, ripping my teeth and who knows what else out of my skull.
There was one tooth, the canine I found out later, that apparently had some serious roots or something (like a small city) growing on it, as when she finally got that one out both the dental assistant and the no-nonsense, all-business dentist paused for a few seconds for a collective “whooooah!”
Gods, I wish I could have gotten pictures of whatever caused that, but speaking wasn;t much of an option from long before that.
Strangely enough, these extractions bled almost not at all, not even soaking half of the first wad of gauze with blood.
Strange, as they seemed so much more difficult than the first ones pulled…
It’s almost time to stop writing as my battery is getting low, but as promised – Here is The Blood.
After the first extractions I had clots the girth & size of two inch slugs of blood coming out of my mouth – first a bit would begin hanging down, reaching towards the back of my throat, then if I couldn’t “cut” it off with pressure between my tongue & roof of my mouth, then couldn’t even cut it with my fingers, I had to pull it out. There’s a shot of one of the much smaller ones in here… as well as random shots & some twisted fun with bloody gauze.
I won’t be done with all the extractions until the beginning of November, at which point there is another few weeks before I’m set up with my shiny new teeth. I must admit, the liquid diet is already getting old – but hey, at least I’ve lost the jowls!
With all the grotesque shots I’ve been throwing in here lately, I felt I should put a couple in to remind me of what I’m working working towards, as well.
One day, everything will be fixed again. I just need to have patience.
Okay, gotta post & shut down the computer…
Keri, Isa, thank you both for your wonderful comments on the previous post. I’ll respond to them soon, but in the meantime, Keri – you have always been special in my life, and I sincerely appreciate your words, more than you know – but I believe that anyone could be as strong as I have been, I just choose to take unknown roads that sometimes test me more than most. I know *you* can do absolutely anything you want and skate through it…
and Isa, no way in hell you’re getting my knees, punk. I still have a whole bunch of ass-kickin’ to do. (But I will build you some new legs if this ever happens again!)
And now, put away the food – it’s picture time.

Living Decomposition – & a release to move forward. (Warning- photos not for everyone.)

Around and around and around we go, where it stops…
It comes again, suddenly and with little warning.
I swell. I scratch. This time, I write to try to make it go away.
I Learn.
Close enough to the same time for the past three years to now be called a season – the legs swell, starting at the ankles, feet, calves – at first only a little, only enough so that you hope it might go away this time, pass me by because somewhere we did something right – but again it is here, and I only know enough about it now to be afraid.
The swelling, the flesh stretches,  dries, cracks, then a thin, yellowish clear (or clearish-yellow) fluid begins to seep out of almost the entire calf, behind the knees, at the ankles under the bone. It runs in rivulets down my legs or soaks like water through my pants.
It’s enough to drive me insane, if I wasn’t able to sometimes laugh, if I didn’t have something of a morbid humor & fascination that I can sometimes dredge out of the frustration and pain.
Hell, through all the crap it helps to figure out ways to smile, even if it’s by swearing at my legs and threatening to disown them. (Do they do leg transplants yet, or should I start building my little skate-kart now? I’ve got some wicked sharp knives and a low tolerance for this shit anymore, ye hear that, you traitorous bastards?)
The first two years I went with the words of the dermatologists – “Moisturize like crazy.” – but while that helped the dry skin & itching (as long as I kept them wrapped in a couple rolls of gauze then ace bandages so it wasn’t simply immediately caked on the inside of my pants or skirt – GODS, I miss wearing my skirts!) – while it helped with the dry skin, the second the rolls of saturated gauze were removed, my legs poofed up again and now – now, the skin was soft. Instead of only the dry flakes of skin falling off, my fingernails found no decent barrier between the outer layer of flesh stretched thin and regardless of how lightly I scratched, they cut, gouged past the only protection, digging into the white, soft flesh with no resistance. Down atrocity legs ran rivers of blood.
When I changed the dressing, I would soak through paper towel after paper towel to the point where they were dripping. Towards the end of last years season I finally realized that I could have some twisted fun “painting” with the blood, quickly setting a towel on my leg then taking it off. A couple pictures are below – though those certainly aren’t my best work.
I try to keep my spirits up. I try to remember that there is more to me than this.
I try to learn.
I try not to scratch, but that’s nearly impossible. (And of course you wouldn’t be thinking “Why doesn’t he just not scratch?” – would you? No, of course you wouldn’t be so completely idiotic or dim-witted as to have that cross your mind – but then again this automatically posts to Facebook & Twitter, so just in case…) Imagine a huge, unbearably itchy mosquito bite right in the middle of your back, the place you can’t reach. Now slap some Poison Ivy on it. That’s close. Now some poison Oak. Getting there.
Now imagine the insane relief when that spot is scratched. Get the picture?
That’s what it is like on both of my legs, with slightly less over much of the rest of my body, mostly my shoulders & arms, chest & lower & upper back.  One small place starts itching and it expands. I can usually only stop when the relief turns to pain, or close to it. There are times when I almost weep, times when I literally can’t stop to make it out the door to an appointment. I feel like I should be stronger than this, that I should be able to use my mind to control it, to at least be able to… I don;t know. Stop.
It feels like the itching is coming from deep inside, inside the bones. I have learned to keep my fingernails trimmed close, that sometimes rubbing violently with a rough terry-cloth towel will help.
I try.
I learn.
I sometimes scream in frustration.
My dry, powdered skin coats almost every surface. The larger pieces fall to the floor. The legs are an entity all their own, thick, moist scabs & chunks of flesh. I can pick those up with my fingers.
Alice wears my flesh.
I wipe almost all the surfaces down daily, sometimes twice, vacuum every couple of days. I’ll be damned if my home is dirty. A clean home helps keep my spirits as up as possible -(and you know, all those visitors I get.)
When dealing with this, my strength, my spirit, and my passion for life is all I have to keep me going –  through it all, these are the gifts I have been given.
Still however, at times these wane, and I don’t know what I would do without Val & John, my nurse & doctor. Our relationship goes far past patient-caregiver. They are my friends. The friends I have been needing since that call in 1985 but never had until them – and they know me well enough for me to trust that they are true. When all of the strength I have just doesn’t seem to be enough, I know that they will be there, and I know that they will understand.
It seems as if they see something special in me  – as if they see who I’ve always felt myself to be. Of course, there have been and are others, a few people who have come into my life and remained deep in my heart, but those have usually been lovers, whose heart I remain in, but whose life I couldn’t…
Just the other day John looked at me, straight in the eye, and told me that he is grateful that I’m a part of his life.
It’s because of him, because of Val, because I have so much left to do in this overwhelmingly beautiful world that I’m going to keep fighting. I am going to keep fighting and beat this. There is someone that I am becoming, and I would love to know who that person is.
These are words. Words that needed to be said, so that they can finally be released, discarded, taken out of my head. You now know a small amount of what my immediate life is like, where kSea has gone.
I’m busy doing whatever I can to kick the crap out of this.
I’ll be back, but different, and with one hell of a passion, one hell of a vengeance. You don’t go through shit like this without having it affect you in some way – learning, growing, becoming more appreciative of the smallest things. You see more, love more, and have an uncontrollable urge to smack life into the dull and mundane – (or maybe those are still the side effects of the Hep-C drugs…)
One last thing, please, I can’t ask you with enough  importance to me – if you choose to comment on this or any other post, do so here on my blog. Some comments I receive are beautiful, mean a lot to me – and I want to keep what you say regardless of what it is. I still have comments from years ago that lift my heart when I read them – but if you comment on Facebook, they will soon be lost forever.
I would hate to have that happen.
If you have an inkling to call, text, or email, my phone number & email address are everywhere.  Please. Really. In order to get or reply to messages on FB I need to use my computer battery, and these days fuel for the generator to charge it is very tight – and I have been tending to stay away from cafe’s since I’m supposed to keep my legs up – and yeah, the whole top of my mouth is gone too.
That post is coming soon…

And now, picture time!

Though I wish I would have taken many for my own morbid & grotesque entertainment (my hands were usually covered in blood), here are a few photos that I have, mostly in order – beginning with my first staph infection on my calf, then the next staph infection which sent me to the emergency room at Love Parade a couple years ago – and on. The second year of swelling when it was clearing up, at BM ’08, and some rather unexciting ones from the past week or so – oh, and of course, a couple of the paper towels.

A Revelation.

How long do I need to keep fighting this? How long can I?
It’s coming up on three years, three straight years of peeling away flesh, fingernails caked with blood – three years of almost getting better and then not. Three years of hope, of trying to figure out why this or that wasn’t working. Back and forth, always ending up with the same result – always ending up with the swelling coming back, the pain, the frustration of not seeming to move forward at all.
When it comes down to it, three years out of what… twenty-five, twenty six ago, when I first heard, was first diagnosed… when I got the surprise call at work in Berkeley from a Doctor in San Diego, telling me that I was by all rights dead. The inflection in his voice didn’t hide the gravity of the news well at all.
No one knew enough about it then to be able to promise any hope, so I pushed it away, ignored it, hid it in a place that only I knew of, but I couldn’t keep it from seeping through the cracks of the wall I built so meticulously around it.
If I denied it with enough strength, would it go away? This random call from hundreds of miles away, my parents had asked me if I wanted a general physical when I went to visit them, and had also, completely without my knowledge, scheduled the HIV test. I didn’t have the slightest that I was tested for the virus until I was surprised with the telephone call at work telling me that I had it.
Was it even true to begin with? Could it have somehow been a prank call?
Was it 1985, ’84,’86? Does it matter? Though death was thought of with every cold, every ailment, I decided to live…

Three years is nothing. Keep fighting. There’s a reason that I’m still here. Keep fighting.
So little said here. I don’t feel like writing. I don’t feel like writing but needed to, needed to talk to someone but there has never been anyone, anything but pen, paper, computer. The only best friend I have ever known or had.  Writing demands nothing from me except the courage to reach as deep as possible and find the purest honesty.
I am afraid. My body is decaying. The disease is no longer hiding.
It has been a good life, and I am grateful for every moment I have had. For every person I made smile, for all that I have learned and been able to share with others. I am so very thankful that I might have possibly made their lives just a little bit more beautiful… if even just for a moment.
So much more to say, but not now. Some things will never be said.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
I write about this. I write too much about this. Am I to blame? For over half of my life, it has controlled my life. Every love shadowed, every dream coming with the fine print. Sure, you can dream, but don’t dream too far into the future because you’ll probably be dead.
I turned from boy to man with the ever-present haunting of what I knew.

Am I the disease or the man?
This is the new question, the one that has come as a result of the past three years.
I have let it become me, have let it control my life – my actions, relationships, words, thoughts…
Am I to blame?
Only if I don’t do anything about it, now that I know.
It is time for a new fight; a new quest.
It is time to become the man.
There is still much to say, much to release & let go of. It will be a process, changing into who I am – and saying goodbye to so much of me…

The Beauty of Chaos…

There are some new things brewing in CultureFlux, things that open this crazy thing up to entire new worlds – worlds of Magick, Mayhem, and pretty much anything that is able to float across the imagination and be shared with others, in any way you choose.
The new section is called (at least temporarily) Mysteries & Marvels, and it was imagined, formed, & created in pure chaotic joy – a place that has no name, no structure, no agenda, and is welcoming you to add your bizarre & twisted take on the world. Come on in and enjoy, slide me some things to add to it, and entertain your whims. (Trust your Lust!)
Also adding to content, under the “Art & Photography” link you will find a piece on an amazing artist named Stephanie Bolton, who creates beautiful paintings focusing on a subject that is dear to her heart – Belly Dancing. Come on in & enjoy!
And now, The Absolutely Amazing, Truly Astounding, Please help Support CultureFlux

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And in the meantime, swing on over & enjoy the ever-changing CultureFlux Magazine – I look forward to hearing froom you soon!

90 days of hell & hope…

Which have been stopped short. The meds weren’t working to their satisfaction, and at three months, that’s when they decide to continue them or not.
The decision was made.
After severe disappointment, the time invested, the pain that went with it, all seemingly for nothing, I switched things around & began to look at the positive aspects – the side-effects that were countless and nearly unbearable –  from increased, irrational loathing and irritability about everything to complete exhaustion at all times, and everything in-between, I won’t have to tolerate those anymore, and maybe even be less of a recluse. The possibility of a road trip that lasts more than a week. Many things, countless…
Everything happens for a reason.
Everything is decided from each moment, infinite ways to decide to go – and each moment decides the next. There are worlds out there, so many roads to take inside & out, making certain that I see what is offered on each side instead of the usual single tunnel vision we have…
…and I should be sleeping now. Thirteen teeth dug out of my skull in a few hours.
This will be something new – I wonder what it’s like not to have any teeth? (I wonder how much blood I can swallow and not vomit?) More pictures will be taken. For those with weak stomachs, this is your second warning. (Two inch long slimy clots of blood – blood-slugs!) Of course, I couldn’t help but dressing some of the shots up a bit – doll heads, dinner settings… and that was only eight teeth.
4am. Waking early to meditate, then off to the dentist. As I think I said previously, this is a blessing. I know exactly what the outcome will be… instead of three years and running of trying to figure out what the other mess is about.
If anyone has a desire to bring me a milkshake, please text – 504-261-1099 – I can’t see wanting to be sitting in a cafe drooling blood to charge my computer

Thirteen. The blood flows again…

Dead to the world exhausted. Feels like all life has been sucked out of me, but I get a booster to help my red blood cells tomorrow so that may do something – essentially my body is suffocating, as the cells that carry oxygen to it are killed due to the meds… and the blood loss from having my teeth pulled certainly didn’t help… it finally stopped after five days. Man, do I have pictures. First warning.
The past days were spent at Bobzilla’s. Gods, it was wonderful, needed, being able to clean, sleep, relax.
I counted. Thirteen more teeth on Wednesday,  the final thirteen. Will try to write, butthe energy – there is nothing in me, a shell containing nothing but a heart that needs to write, needs to work, but the body will not acknowledge the fire inside – my mind, my heart, they still work, still scream for life – but the shouts are lost in fading echos bouncing off the carcass of a man…
Thirteen. Then more to fix this, to fix that, bringing back the blinding light of the passion inside now shrouded, clouded by this silly thing that has wasted away.
It will come back. My heart & mind will do waht it needs to, as this insatiable thirst for life, beauty, and the purity of each perfect thing that makes the heart so full it explodes – there is always more out there to remind me that it is all in here as well, wrapped in fire, breath, and love.
…and I wonder where those words came from. I just wanted to write a couple lines, but kniew that would be almost too much to ask. It’s not always like this, just much of the time – but still, only a body, & it can be fixed good enough – it sure as hell wasn;t always like this, nor is anything forever.
Hell, look at me. I need to be in bed – but damn – even though I have no idea what I’m saying, it’s pretty exciting saying something… I’ve wanted to for days…….