Saying goodbye to my little friend

It’s always there, reminding me. Reminding me that I’m sick regardless of how well I may feel, reminding me that there’s something wrong, something that would never let me believe, even for a moment, that just like nearly everyone else I could relax.

Every time I looked in a mirror it made certain I wouldn’t forget.This monstrosity. This hideous thing sticking out of my abdomen.

Every single time I saw a woman that enticed me – a playful look in her eyes, a laughter that sounded like music, the language in her body and a beckoning gaze  inviting me to approach, I would begin to smile inside with the hope of putting an end to this everlasting loneliness – then turn away.

What if we ended up liking each other? What if we laughed at the same absurd things, our eyes sparkled a bit brighter as we looked at the other… what if one night we went home together, and it came time to take off my shirt?

Of course I would have warned her, told her about it, but hearing and seeing are two entirely different things. When she actually saw my umbilical hernia, that I have a tennis-ball sized mound of flesh & intestines sticking out of my belly that looks frighteningly similar to a scrotum, what then?

For years I’ve been destroying any possibility before it began. For years I’ve been pleasing with the surgeon to cut me open and fix it regardless of the consequences, knowing that they couldn’t be worse than what I’ve been putting myself through.
Knowing that they couldn’t be worse than facing the near-guarantee of a lifetime without anyone special to share it with, knowing I would never get close enough to let myself fall in love again. Knowing that this loneliness would forever be a part of me…

Now, over six years of begging & pleading, I am 18 days away from the surgery I’ve wanted all this time.

He finally agreed.

Sure, it’s risky as hell for me, with a roughly 30% chance something may go wrong and I’ll die, but weighing the risks against spending the rest of my life afraid to even approach & flirt with a woman? I’ll take my chances. I really fucking miss being in love.

Eighteen days.

Shit. I need to try to remember how to actually talk, flirt – and date  again!

Maybe this surgery isn’t the best idea after all.
(Just kidding – FUCK YEEAAH!)

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Just sit. Be quiet. Think.

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

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

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

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

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

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

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

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

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

Moving Forward

Every morning I would wake up excited, the doors to infinite possibilities wide open & inviting me in. Decisions were sometimes made by careful deduction, but more often than not with little more than whim, the flip of a coin, direction of the wind, or the quiet, passionate desperation that endlessly seethes inside of me – the eternal need for the unknown, for adventure. To continually test myself with whatever blessing or adversity the Universe could conjure up to throw at me, and grow. And learn.

Plans to move to Boston fell through so I found myself in Austin volunteering for Katrina refugees in an artist’s forest. A new friend had never been to Burning Man so I promised her a ride from New Orleans, only being able to find a van to buy less than 10 days before we had scheduled to leave. I couldn’t find the magazine I wanted to read so I decided to create it, not having the first idea how I was going to, or even how to build a website – and four months after it launched was producing shows for the first time & winning awards.

Nothing could stand in my way. The world opened to whatever I sought or desired, and if it didn’t exist I created it. It felt like nothing could stop me, like this life I had shaped and formed and fashioned would keep storming ahead. I made my dreams so real, so beautiful, that they virtually fulfilled themselves…

…and then there was nothing. I felt like I was lying in the middle of a freeway, unable to move as life rushed by and all I could do was lay there, static in a world of action, decaying, decomposing, trying not to die.

And time passed. What was supposed to be a three month vacation turned into eighteen months of hell. People visited, some, I’m sure, expecting it to be the last time they saw me alive. I was good at reassuring them, I think, letting them believe I was fine, strong, getting better so that they would be more comfortable. I don’t think I ever expressed how terrified & unsure I was most of the time. I wouldn’t even let myself believe that. I couldn’t. Instead I focused on healing & what I would do when I walked out the door. When I could, I read feverishly. Studied quantum science, I taught myself to use my mind to heal my body.

It was easy to get to know the people in the hospice well, as it was only 14 rooms, 14 people at any time. You found out why they were there, created a familiar bond with them. Of the 15 who died in that time, I watched four with the exact same diseases and symptoms as I had give up and die – three of them younger with less severe symptoms. I’ll never know why. Was it the constant pain, or thinking there was nothing to live for? Had they forgotten their dreams?

I don’t know. I would just wake up and their room was empty, sterile, as if they had never been there.
I couldn’t let their deaths affect me. I couldn’t give in to the pain or the constant terror or the stench of my own flesh rotting. Up until the moment I walked into the hospice – those years had been the happiest of my adult life. I wanted them back.
I had to keep fighting.

~ ~ ~ ~ ~

I walked out of the hospice just a little over six years ago.
All that time I have carried what happened, what I went through, on my shoulders & in my heart – and deep inside of it, I have also carried my sickness. Using it as a crutch, the only thing special about my present is my past – that I’m simply here. Alive, but not living. My life no longer moving forward the way it had been before it all went to shit, and I was left with nothing to hold onto but what I “had” done, instead of what I am doing.

I learned a lot about mind/body healing while in the hospice. I have absolutely no doubt that, as impossible as it was sometimes, if I hadn’t *known* I would live, I would have ended up just like those I watched while there – another sterile, empty room, my body carted out on a gurney behind the curtain of night.

But I still had work to do. Until I let go of that part of my past, I would always consider myself “sick”, and therefore never be able to be *truly* healthy, perfectly healthy – but it had turned into my identity. “The guy who didn’t die” was all I felt I was anymore.

At least until recently.

It feels, now, like I have a future, something to look forward to, and something that I’ve been looking *for* since the moment I walked out. Though it’s not close to enough to satisfy me fully – I still need a vehicle to get the fuck out on the road & just *drive* for days on end and find myself nowhere I’ve been before, I am creating again – I am frequently challenged, always learning, and I love designing & constructing my jewelry. And I have something to look *forward* to. I can let go of who I *was*.

The warrior awakens. There are new battles to win.

And you better fucking believe I will.

 

 

behind the smile

Where do you say what you can’t?

They tell you to be buoyant. They tell you to be enthusiastic, strong, confident in the words you write, the words you share and hope the world will see. When people visit or hear about my Kickstartercampaign, they don’t want to read my woes or worries.

For now, I put on a plastic smile like a McDonald’s server and don’t show the terror. For now I don’t say what I am truly feeling.
People don’t want their bubble popped. They want to feel confident in my project, to be lifted higher in the buoyancy of my words, as forced & manufactured as they may be at times.

I want to make them happy. I do care. I try to give them what they look for, and I hope by writing the words I will also be lifted.

I can’t write “If this campaign isn’t successful I’ll probably die before the book is finished”. As true as it is, threatening people to support my campaign probably wouldn’t go over too well, y’know?
Still, boiling in this head is the knowledge of what will happen if this campaign doesn’t succeed. The things that only I have known.

Until now.

THIS is where I can scream. Most the people I know on Facebook don’t take the time to read anything over a few sentences, regardless of what they say. Here I find a sanctuary, either real or imagined. On WordPress.
This is where we ALL can be real, be vulnerable. This is the shower we sing in.

My book is all I have anymore. All there is left in me to give. Due to the way this disease works and what it’s done to me I can’t really perform, can’t work. I don’t know the days I’ll be too exhausted or in too much pain to do more than pass the day in bed. Though those days are less, they still happen – and the rest are filled with such a growing hatred for the life I’ve been living since I was released from the hospice that I know with certainty that it’s something I can’t go on with.

The book is/was/will/would have given me a reason, a new breath, a purpose. To go back to living each day worried about getting herbs, to go back to each week with the only thing I can focus on is begging more friends for money to afford them is no life at all.

Every waking moment I’ve had the thought of how my life would change to keep me going, to soon be able to live a life that matters, to have a purpose for each breath.
To enjoy life. This is what the success of the campaign would offer me.

I have envisioned myself a thousand times or more waking up for the first time in years with the excitement of living, of having something I needed to do besides beg for more money. I would sit in random café’s writing, sipping coffee for the flavor and remembering with clarity the amazing life I have lived, smiling to myself as I lifted my head & turned to look out the window and knowing that I’m doing something good. That I once again had value.

I would sit at my Mother’s dining room table, facing the back yard wo I can watch Ruby play, run in and out of the door with the dog my mother and I would find for her in a rescue. She says she wants one and I could get it for her, help her take care of it. Help take care of my Mother. She would come home and ask me about my book, and I would share the stories I had written that day. She would get to know me and I her. We have 48 years to catch up on.

I would hold my head up, a smile glinting off the green in my eyes and hinting on my lips. People would know again. I would know myself again. This is why I am. This is me. I would be full and in love with life. It’s been so long, so long – but I woke, rang the bell above my grave and purpose came to dig me out. I sucked the fresh air into my lungs and this empty heart was filled.

They would read my stories, my life laid bare, naked for them to see and they would see themselves. They would find the parts, the lines that made them stop & look up with a sudden spark of understanding that it only took a decision, that the past didn’t matter and all the smallness they felt would be washed away in the ink of my words staining their face with a determined grin. They would mark the pages, underline sentences, read it again and maybe buy a copy for a friend or two. They would write to me and I wouldn’t feel so alone anymore.

This campaign needs to succeed. I need to write my life, give it away.

The heart inside of me is weary, vacant. I say I love people hoping that in the spoken words I will remember how. The smile on my face is an advance taken from when I can feel it again, when my heart fills with the knowledge that my life has changed from the barren desert it has become. Beg for money, get herbs. I’ve been kept alive by the possibility of the book, the knowledge that when the campaign succeeded it would be written. Take it away and I have nothing I need to live for and I need a reason.

I try to write with an empty heart and find all I can hear are the sucking noises like those a straw makes in a cup that’s been drained by a ravenous thirst.

Also haunting me is a thought.
In September 2010 I walked happy & full of energy into the hospice/respite that I was supposed to spend only three months in. Up until that moment I worked every day on my magazine, setting up interviews, making the site better, writing reviews and each morning stepping out of my motor-home with a smile. Even though my legs were bleeding, swollen, leaking the poisoned fluid my liver couldn’t process and in extreme pain, I still walked with purpose and pride to the café knowing there was something I was needed for.

I wasn’t able to work on CultureFlux in the hospice. I had been doing fine (relatively speaking) before I walked in, living in poor conditions with no money, food, and only enough water to wash my face in the morning – but I had a reason to go on. I loved being able to help other performers through the magazine and I loved giving them a voice.

Within a week my body began to shut down. My skin began falling off, hair coming out in clumps, and I was barely able to walk. One week.

What will happen if the campaign doesn’t succeed? When I don’t have the dream of writing & publishing the book to keep me alive anymore?

The herbs have kept me healthy, but it’s purpose that keeps me alive. From the edge of death in the hospice to the 4.5 years following, I had two things to live for: Finding my Birth Mother and giving this book to the world, hoping my life will inspire theirs.

I have found my Birth Mother.
For anyone who reads this, thank you for letting me vent, and don’t get me wrong – it’s not always like this inside my head. There are still many times when I realize it’s only the 6th day with 5x that more to go, and anything can happen. Hell, Oprah could see it and announce it to the world! It could go viral on Youtube! Anything! The most important thing I need to remember is to NEVER GIVE UP, even as much as I want to and as hard as it can be to dredge up the energy to go on. WE DO NOT GIVE UP.

http://bit.ly/NGGKickASS

I’m going to keep on fighting like hell for the success of this campaign, to make this dream a reality and again have my heart filled with purpose and passion.

It IS possible, and I’ve come from behind to achieve my goal more times than I can count. I mean hell – isn’t that what we do with EVERY dream we realize? We are WARRIORS, and this is what we do!

For anyone interested what all the above is about, here’s a link to my Kickstarter campaign! I wouldn’t mind at ALL if you supported it by making a pledge and/or shared it as far & wide as you can – you would be my new favorite person!
Just – don’t include the above, okay? (winky face)

And when you go there, please take a second to check out the update – I was *amazed* with what people said and want the world to see it too!

To all out there in WordPress land – thank you for being here for me. And thank you for not charging for my therapy.
Any comments of support or suggestions on how

 

 

 

Found Things of Ass

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

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

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

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

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

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

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

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

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

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

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

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

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

~ ~ ~ ~ ~

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

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

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

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

 

Still kickin’

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

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

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

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

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

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

That’s a LOT.

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

 

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

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

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

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

Do something good.

A Valued Life

I move forward, taking care of things so I have the ability to do more.
It seems to be the way, at least in part, that this whole “Life” thing works – but as always, I’m just guessing.

I heard an interesting analogy once, which I try to carry with me so as to remember not to be afraid. It said that each person, if they drew a stick figure of themselves on a piece of paper, then a circle around it, that inside that circle could represent the experiences they’ve had, the challenges they’ve overcome, and the growth they have achieved. Frequently, there will be something that occurs outside of that circle, and that if they step up, reach out, and find a way to take care of that challenge as well, then their circle of experience grows to encompass that which was previously unknown as well.

This makes sense, as with each challenge, if approached well, causes us to grow in a way that is so much more than that one challenge, as we need to face all the doubts inside of us in order to reach out and take care of it and move on.

With that in mind, and the memories of the challenges I’ve met, makes me realize that I can do anything.

I just need to remember that as I wake up and look towards what each day may bring – the beauty, and the pain, there is nothing that can compare with what I’ve already experienced and stepped through. My life has been amazing, and has given me all the tools I need to progress further, to always grow, to let my goals & dreams come to fruition.

There is so much I want to do.

I want to give everything I am, and everything I will become, so that I can help in the way I’ve been helped before, and offer the wisdom I’ve had to find for myself – when there was no one around to offer me theirs.
I want to help soothe the people who hurt; to give them validation, and a way to look at it, find the strength inside themselves, and walk through it.

Like walking through a waterfall.

Dry off. Move on. There is a world waiting for you. A world that needs you.

“If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any minute.” – Marcus Aurelius

I am focused on my book project so much lately because that is, in many ways, what will help me to achieve the dreams I have – to entertain, to inspire, to help, to live a life of value – and show others how to do the same.
To live a life they love.
It’s amazing how much easier life is when you simply change the way you look at it.

Help.
Create.

Travel.
Have an incredibly rich and even more satisfying life.
Kick ass, and
Be able to take care of my Mother.

These are the things I want in life.

Of course, I wouldn’t mind becoming a world famous author either…
But for the time being, I’ll be thrilled with just being able to afford to publish my book.