Strange, being here.
The outside world goes by without any need for notice.
It’s almost a struggle to answer emails, to have even that taste of what may be happening
a soft bubble of non-existence, fed, cared for, even had a private nurse come in today
just for me
and time goes by far to easily, so alien to me
just the pain to remind me that I’m alive
but I need to find something, something jagged, something sharp
or soft & beautiful enough to make me cry
to puncture and rip the bubble away.
I keep searching for a way to begin this entry, to say what I wish to say, to describe the emotions without letting them take control – without letting the anger, confusion, and deep sadness about the world I live in seep through and tell everyone how much I love them, how much I appreciate them – and how much I want scream at them to fuck off – but that’s where the confusion and hypocrisy come in.
Please take into account that I’m still processing this as I write it but need to get at least something out, and know that regardless of what is said below, I do truly appreciate all of the love and support that has been coming this way.
It would have been easier a few days ago before all this began, before an idiotic presumptive conclusion was made that I was heading downhill and posted on facebook. Then, none of this would have been necessary – but at the same time, in a twisted way, I’m almost okay with it, as these thoughts and feelings are not by any means new to me, just have been suppressed and shaded over to some degree – but not enough.
The truth is that yes, I’m sick, in quite a bit of pain, and have been in pretty bad shape – but I’m sure as fuck not on my deathbed. I’m way too stubborn to leave this sack of bones behind before I’m able to get healthy enough to get back on the road and just travel wherever the hell I want. There’s just far too much more to see, far too many people still to meet, and far too much beauty to be completely awed by while I’m still in this form.
The truth of the matter is that what I’m dealing with now – the feeling like shit, the constant pain, the flesh falling off of my body and rest of it is only a little more severe than what I’ve been going through for the past three years.
For the past three fucking years, in my motorhome with all this shit, taking care of myself, doing what I need to do in order to survive. Of course, you didn’t know – I played it down, everything’s okay in the “how ya doin’?” rush, we’re all in passing, all busy and don’t *really* have time for the truth about how someone is truly doing, so of course, you didn;t know, how could you?
Here’s an idea: call. Stop, and look in someone’s eyes when you ask. That’s how we can know about people.
But I didn’t feel I had that luxury, as I’m sure many of us don’t – so I got through it alone, with the exception of one person, Isa – the single person who checked in to see how I was doing or just to say hi on a regular basis, the only person who I didn’t feel guilty that I might inconvenience them by disturbing their busy life with my problems.
The only differences are that now my Dr. has been able to get me into a truly incredible hospice AND respite facility that is offering kickass care – and now, becuase someone else put the word out, others know about it. People I haven’t heard a word from in months or years, people who have never contacted me at *all* are getting in touch with me now that this is out there, and in true sincerity asking how I am.
Honestly, though it’s a bit overwhelming (holy CRAP!) I truly do appreciate it…
…but it also brings up more questions inside of me.
I wonder why it’s so seldom, if ever, we take a few seconds out of our day and send a quick email or text or call someone we might be thinking of, and just ask how they are. I mean really are, and be prepared to have a few moments to listen.
I wonder why we count the time we spend running around getting ready for performances and time in clubs as actual time together.
I wonder why we so seldom take the time to truly get to know someone. I wonder why it seems so difficult to, when all it takes is being honest, open.
I wonder why that is so hard for some.
I wonder where the fear is based; If we’re worried we won’t be liked, or worried that we won’t like them.
I wonder what’s inside of you.
I wonder if this makes any sense.
I’m pretty damn sure I sound like an idealistic fool, and I know I don’t give a fuck, and
I know that I’m guilty of the same thing – but I also know that I have occasionally tried.
Ummm, so yeah. I’m sick, but a long, long way from dead. Just in the shop getting a tune-up. I’ve been here a month and I’ll be here for two more (or longer) while we try to figure out the best way to go about fixing me… I’ve got the will of a killer in a horror flick that has sequel after sequel (- and I must admit; with my hair falling out due to the stress on my body, no top teeth, and skin flaking off my face, kind of *look* like one!).
and I’m pretty sure that when the two months is over and I’m back to living in Alice (or more than likely before) that all of these words will be forgotten by most except me.
I hope that you prove me wrong.
And now, thanks to a visit by the loverly Robin Hoodlum & her amazing acupressure treatment that helped me sleep for the first time in a month a couple days ago, I’m going to get some more of that sleep stuff.
And now, picture time! My room, legs, why I couldn’t type for a bit… and you can figure out the rest. and(Isa was kind enough to bring me some teeth while I wait for my new ones.)
(And so ya know, my legs look one HELL of a lot better than this now, but they’ve also looked worse.)
There’s a hell of lot to write about, but by far this takes the cake – takes the whole friggin’ bakery, so while struggling to keep my eyes open; briefly…I received an email from my sister yesterday (Monday) saying that my mom is in town until Wednesday – and wants to see me.She’s been in town 30-40-50- times before. We haven’t spoken in over two years, and quite a time ago (due to too much to get into right now) I erased both mom & dad from my life. As an adoptee, it was simple – in my heart I switched them to acquaintances – though they are acquaintances who raised me, were (by law) considered “family”. They tried as well as they knew how; but they tried to make me like them, not accepting anything else, or perhaps not knowing how. While expecting to feel bad, when I bid them that final Good Bye I felt such immense weight lifted from my heart that it truly changed my life.Now she just pops in wanting to see me?Now she just pops in wanting to see me and the old, intricate anger begins to seethe.I don’t know that by doing the universal “mature” thing and letting her see me would be good. The assumed “mature” action might just be horribly destructive – and quite frankly it’s fucking inconsiderate and rude as hell on her part to pull something like this after all this time, with no opening dialogue at all.DAMN, man – everything sure is happening all at once. Having fun again I see, eh Universe? I really need to sleep – or at least to make an attempt. Without question, I need to meditate and do Rune work.As always, if you find this link on Facebook and want to respond, please respond HERE & NOT on Facebook. I would really appreciate it for many reasons.
Okay, Universe/Spirit/GodGoddess/Great Ooh-Ahh, etc., we both know that I, of all people, can appreciate your sense of humor, and we’ve certainly had some laughs together with things like my motorhome getting towed twice in a month, breaking down on the way home from Burning Man last year with Cory and being stuck for a day on the side of the road at, of all places, Donner Pass (which I must say was brilliant!) and countless of other fun times that you’ve had at my expense like some sadistic scientist seeing how much I could takewe have had, but you must realize that while I usually am able to laugh at the absurdity, it doesn’t necessarily mean I’m having a ball, ya dig?
You do? Okay, cool.
That having been said, I also need to say how much I appreciate that you never, ever, have knocked my butt down without somehow coming through and offering me a hand back up in the end, which I am grateful for and is probably the only reason I can still laugh at the games you play. You’re always there when I need ya, and that – well, that’s a good feeling. I mean hell, sometimes you even make things better than they were before you had your fun and played your little joke on me, and quite honestly, Thatis what I’m hoping for this time, too. I can’t really say you owe it to me, but come 0n now – this time you’ve gone a little further than you usually do, and it’s been a looooong time of a whole bunch of not much fun at all for me… Oh, wait – I think I should probably let those who don’t know what we’re talking about in on what’s been going on before I go further.
A while back when I was feeling a bit stagnant & colorless, kind of blah and uninspired, I dove into the deep end of introspection & noticed some things I wanted to change. To “transform”. Things about myself that I felt I needed to shed & let go of in order to keep smoothly sailing forward in the perpetual quest of personal & spiritual growth, and all that fun stuff that makes me go “A-HA!” when I think I figure out another piece of the puzzle.
Well, the Big ol’ Universe got up to its fun & games again, and took a couple of words – “shed” & “transform” – and just went a bit crazy with them.Decided to have some “fun”.
Instead of my intention, which was entirely internal, it decided to play the external hand &, well, off it went, using this bag of flesh as a playtoy.
Of course to it, the body is just that – completely immaterial, especially since fewer than 1% of atoms that were present in the body last year are present today, and basically we’re all just energy anyway, a world of empty space in constant flux.
I must admit though, that I like this thing I walk around in. I mean, have you ever tried to slap on makeup or set a top-hat on top of something that isn’t at least presumably solid?
Long story short, (for the grotesque details you can go back a few posts to “Living Decomposition – & a release to move forward.“) when the skin is so thin from falling off I have now scratched down to the ink in a tiny spot of the tattoo on my left arm, my scalp is so dry my hair falls out in clumps, strange fluid leaks out of my legs – and just to add a bit more fun I have my entire set of teeth ripped out of my skull during all of this – well, I could take more, but quite honestly I think it’s time to switch this game around and see how quickly I can completely reverse it.
That was a large part of posting “Living Decomposition…”.To get it and its hell out of my head.
Not to get all woo-woo mystical or anything, but I do know that the more you focus on something, the more ya get it, whether you want it or not. It’s just a simple law, ya dig? Like gravity or the thing that Einstein guy came up with.
Well, the Universe & me being pals & such, it listened. My uber-awesome doctor & nurse set some things up, & that very Thursday I met with a person at a care facility, and literally just a few hours later I got a call from him saying that I can move in to this absolutely incredible place on Wednesday.
Wednesday. Tomorrow.TOMORROW!!! Okay, feeling rushed. So much I need to do! (Luckily, thanks to Bobzilla, I have space to move around and a place to clean stuff – and hot, um – liquids to eat. I swear, if it wasn’t for him and the way he frequently lets me use his home as a place to ground & just have a nice place to relax – and him to talk with or share a meal, full-time motorhome living would be somewhat more difficult, I imagine…)
The place is called Maitri, and I really can’t tell you how incredibly thrilled, how overwhelmingly blessed I am to be able to be there. (I mean think about it – only 15 rooms, and one just happens to be available right when I need it the most. If that isn’t blessed…)
I will be getting respite care, as some, while others are there for hospice. I don’t know what the situation will be, but maybe, just maybe – for those getting hospice care, I might be able to be a tiny, special part of their final time in this form, to give them something from my heart, if only just a smile. Perhaps even to learn from them.
Okay, I really need to split now, pack, and figure things out, like how I’m getting there with my bags. There’s a lot more to write but I’ll keep in touch, let you know what’s going on through my postings here on my WordPress blog. If you want to follow along and aren’t on WasteBook (which I don’t post on anymore, but links to this are automatically posted there) you can subscribe – or even better, you can find a link to this blog at the bottom of CultureFluxMagazine.com.
Can 90 days of heaven undo three years of hell? You better friggin’ believe it. Just wait until you see me when I get out at the end of December.
<OH – and if anyone can give me a ride from Berkeley to Duboce & Church in San Francisco tomorrow morning, please let me know asap by calling or emailing – NOT by posting on Facebook, please.