Friday, May 24, 2013

The Folklife-n-Death Festival

I made the very difficult decision to back out of my Folklife performance.  For those of you who don't know, Folklife is THE MAJOR folk festival in the region, taking place in Seattle this weekend.

They'd told me the competition had been fierce, but in the end, they were excited to offer me a spot.  And I was excited too. And then, nothing got better as fast as I wanted it to. And a few weeks ago, I finally had to make the call.

Coyote's fortune
The trip was all my worst nightmares in one:  Memory, driving/flying, crowds.  I couldn't even read the stories I was supposed to have memorized.  I don't want to stand up in front of a crowded room of strangers.  I don't want to try to remember 5 stories (I had just attempted to read a novel and had to quit half way through because I still had no idea who any of the characters were nor the plot line.  Every page I turned erased from my mind every thing that had been on the previous page.  It's nice to live in the moment, but that is ridiculous.)  I can't ride in a car for more than 30 minutes without getting sick, 15 minutes if I'm driving.  And I can't do crowds, at all.  So, here it is, a competitive slot and I can't do it.  Even more horrible, I didn't even want to.

Pursue your dreams! Chase after them! DO THE WORK! Whatever it takes! Reach for the stars! Believe in the impossible!

Me? I quit.

Coyote's drop kick
Maybe this is temporary.  I'll be back, right?  How could I not?  I love storytelling.  I'm passionate about it.  I even have a venue/sponsor now for my one-woman-show... that I can't do.  But it will wait.  It will all wait.  And as it all waits, I feel nervous.  But also this odd, unreasonable certainty, that when I am ready again, the opportunities will be there.  The world is full of them, right?  But maybe not.  Maybe there are some opportunities that are once in a lifetime.  But what scares me more is this: maybe I won't want to do any of that ever again.

Tiki god's garden
Head injuries, they say, can change people, personalities, talents, passions.  It's all subject to trade in.  And I feel like I'm dying.  I feel like I've watched myself die.  Of course, gloriously, my children still have their mother (somewhat) and I still get to watch them grow.  But I've lost much of myself, of my passions, my dreams.  One of my four therapists is working with me on, among other things, grief counseling.  I thought I might be being melodramatic, but apparently this is a common therapy prescribed to those of us with brain injuries.  Everything changes, quickly.  And we weren't necessarily ready or eager to say goodbye to our old lives, our old selves.  I am in bits that we are putting back together so slowly, and like the bike I took apart as a teen, eager to understand it's workings, when I put it back together, some pieces no longer seemed to have a place and other parts needed duct tape.  And that's where that metaphor ends, because that bike was never ride-able again.

So the experts say I will never be the same again.  Thanks to the natural flow of life, that was going to happen anyway.  But these changes were fast.  I've complained about my boring life, rotting in the backwaters, but in another way, I am truly in the flow, the rapids.  Life is change and I am here, tumbling through the thick of it.  My head IS chaos and tumult.  My veins carry the change and flow.  And I am more alive and awake to it then ever.

This experience has provided a rich environment for exploring all of the fun philosophical games about what makes up consciousness, soul, body, how intertwined? How separate?  Bodies as cases for souls?  But when the physical brain is damaged, it changes the person "within."  Bodies are souls?  No souls, but only bodies?  I lack both stamina and clarity to do much more than wonder, but it's a curious space in which I fidget with these ancient ideas.

It seems that I could have worked hard, I could have done Folklife, against the advise of my therapists.  But what would it have cost me?  Months of healing work, hard work, disciplined work, $2000 in therapy spent only on attending that event.  And then at least a month to recover.  It's obvious in my life now: people and activities are either contributing to my healing or sucking energy away from it.  My energy is so incredibly limited that I have to make careful and clear choices.  It seems that's the way it is all the time, perhaps.  Each one of us are always making decisions and each time we include things/folks/food/activies in our lives that detract from our healing, we crowd out those things that will make and keep us healthy.

I think of the woman who made "Super Better" (see minute 7 of this TED video) doing her (other)
 TED talk just 5-6 months after her brain injury.  She did it, shouldn't I be able to as well? But each TBI is different and each person progresses at their own rate.  It is true for the TBI and it is true for life as well.  Life unfolds for me at it's own pace.  I may be impatient and frustrated but this is my own particular life and path.  And comparison is futile, both in TBI's and in lives.  It seems to me now that "life, the universe and everything" is very personal and intimate and demands nothing but that I stand in the center as the petals unfurl in their own perfect timing, a blossom just for me and my purpose is to enjoy it's unfolding.  How perfect is it all!

Chasing the Ball
How un-American!  How unambitious!  I am a traitor!

It's difficult to make these decisions knowing you can't think clearly.  So I abandoned thought, and felt, purely felt.  And I felt sick every time I thought of going.  And I felt peace every time I thought of not going.  And there's a time to overcome fear, but this was not it.  And so I let it go.  I let it go.  I guess, if it comes back to me, it was mine... and all that.

I'd be lying if I said there was no fear.  Stories, storytelling, all the narrative arts have been the organizing principle of my life.  They'd provided goals short and long.  They've defined me.  And I don't know if it's leaving me forever or not.

Starry flowers made from star parts
I have broken down in to bits.  I am disintegrated and I am afraid.  But also, curious.  What comes next?  I went supernova and my essential parts are now floating around the star nursery.  What comes next?  It has no name, but we know it.  I am betting, heavily, on the fact that recycling is the Law of the Universe, not just the Saturday morning activities of some OCD goody-two-shoes environmentalists (I include myself there too).  We know that whatever I become next, it will be filled with light.  We know it will not be able to resist pouring that light into the universe.  We know it will be a light that will birth a billion blades of Emerson's grass.  And that's all we know, the rest is in darkness, yet.

Monday, May 20, 2013

My Life as a Sensory Deprivation Chamber

The Wasp and the Tree Peony
The whole of civilization seems to be about stimulation of every sort.  You don't really notice this when you are normal and functioning like a regular human.  What you think is: let's go out!  go for hike, go for a movie, go to a festival, go out for dinner, see an opera or play or concert, go to the races, listen to the radio, go for a drive, read a book... et al.  We seek to have our senses enchanted and titillated.  This might just be the job of the soul, to seek rapture and joy in being, and all of these things we have built to increase that, to make our sensory experiences bigger, faster, bolder, louder, MORE!  And I am here to tell you that it sucks to be out of that loop, but that also, the soul can be made more sensitive so that the stimulation and connection and curiosity it seeks can be found in small and simple things*... for a time.

When your life becomes a sensory deprivation chamber none of the above are viable entertainment choices.  Just this week, I listened to NPR for 15 minutes for the first time in about six months... and that was plenty, enough so that I needed recovery time. 

Sky Scrapers: those aren't power lines, they're scrapes!
The end result is that I can feel a little... er... rather... okay, totally... abandoned, bored, isolated and lonely.  We seek excitement and we seek these novel experiences with others, to be part of an individuals life and to be part of the life of our whole culture.  And when you are removed from them, it sucks and feels not quite 100% human.  I'm no extrovert and not a true introvert either,  but I sit right on the fence between the two, now more than ever.  I want to be around people I trust and love.  And I want them to be quiet and sit in the dark room with me.
King Louis' every-evening tryst with Catnip

As a result, I've been on Facebook way more than I would care to admit.  Facebook is perfectly designed for those of us with brain injuries.  It provides connection to society and individuals... and believe me, at this point ANY connection is awesome, however electronic and "fake" it seems.  And it provides this connection whenever I feel like it, when I'm ready and for the duration of time I'd like.  It never overwhelms and I never have to figure out how to get out of it.  Everything on Facebook is provided in bite-size chunks, just right for those of us struggling with reading comprehension and retention. I have been tempted to pretend I'm not on Facebook as much as I am, to look but not "like" or comment or let anyone be aware that I am lurking.  That would be more respectable right?  That would make me seem like one of those who have a life, a giant, awesome fabulous REAL life in which Facebook fades into the back ground like a year-old wad of used toilet paper tossed into the bushes behind a campsite by drunk, fighting morons.  But then, that seems even more pathetic, to PRETEND to have a real life, which I don't and I haven't had for six months.  So instead I'm on Facebook a lot and I'm not hiding it.

Rhubarb King
Grocery shopping is the worst of my challenges: rows upon rows of bright colors piled on top of each other, screaming for attention: sugar-free, aspartame, low fat, no fat, extra pulp!  And layered over this visually demanding cacophony is scratchy music, beeping machines, and other people! With Carts!  I recently aborted 3 shopping trips, the intensity was so overwhelming.  With a busted vestibular system, if I close my eyes to shut it out, I will fall over, and then barf.  So I shop with sunglasses on, earplugs in and sometimes a baseball cap pulled over my eyes, prompting one very observant lovely gentleman standing near me to proclaimed, "Confused! And Retarded!" and then run off.  I couldn't tell if he was talking about himself or me, slowly shuffling through my own personal business.  Either way, he was talking about himself.  And what decade did he pull that r-word from?  I will say that I prefer being hit on to being called a retard, although they are related: it's all about them and their opinion, not about you.  It's so odd how the comments of some random a-hole can hurt, no matter what the logic says.

This Asparagus claims to remember being a Cobra in a past life
I am now going through the first days of  new glasses: "When did my skin take on this lizard effect?  Why are my children so close and clear?  When was the last time they washed their faces?  How is it possible to be dizzier?"  The exam made me horribly ill and I cried from stress and put my head down a lot. But this was the very first exam where they said, "What is the lowest line you can read without straining?"  Without straining?  No one, not in the 22 years I have worn glasses has told me that I didn't need to strain.  I mean, it makes sense now, no straining... that's the point of glasses.  But they called it an "exam" and to me that meant I should work as hard as I could, get an A. Imagine, all these years my striving and hard work was simply creating more hard work.

Glasses used to be optional, something I wore to reduce strain, but not necessary.  With my brain now unable to focus on anything when my head is moving or focus on moving objects, it was too stressful to also expect me to compensate both new found farsightedness and old astigmatisms.  And so I hope with these new aids I will make better strides in recovery.

Tree Peony bud offers a cup of water
And although the exam was terrible, I also appreciated eye doctors.  They ask: which is better: 1 or 2.  And then they believe you when you say 1 or 2.  They totally trust that my reports about my experience are accurate and valid.  All of my four therapists do that, but one doctor I saw early just refused to take my word for anything.  I told her I'd had a seizure and her response was "Well, was anyone there to see it?  So it's not documented, is it?" The doctor I saw the day after it happened told me it was a seizure, but no, it's not on youtube and the UN did not send a cadre of international observers to my bedroom on that night. So, help me understand, if a sentient woman has a seizure, but no other person is in the room with her because her kids are asleep and her husband is out of town, did she really have a seizure? Is she also allowed to vote and own property? Do you remove her uterus because it is causing hysteria?  Can women feel pain?  Here's the way this should work: I be the expert on my experience and symptoms and the doctor gets be the expert on what that means and how to treat it. Thankfully, the eye doctor and my posse of awesome therapists get that.

Baby Kale Jungle
I also like how vision is so positively focused.  For instance, I am now really far sighted.  This does not mean that my far vision has become that much better for long distances, but that compared to how I see things close up, it's awesomer.  What if medical doctors were like that?  "Wow, you are well boned at 205. We'll just get you a cast and soon you'll be 206/206 again!" or "You are a champion urine-excreter! So I'm going to suggest Metamucil and prune juice." And for myself, "I am very able-bodied and totally non-Lou Gehrigs.  With four therapists I should be able to make some corrections and get able-minded as well!"

Two Bleeding Hearts are better than one.

And I got a new pet to replace my cow: a kombucha scoby.  I wanted something special to drink on occasion and since alcohol and sensory confusion don't mix, I settled on kombucha and my first batch was wonderful!  Yeah!  I celebrated mothers day playing around with my kombucha mother.. and watching a Poirot with Blue that turned out to involve someone killing their mother.

*These photos, and many others over the past few months are part of my pretend project I've called "Five Acres and a Phone Camera," during which I've been exploring how many interesting shots I can take with my phone without leaving this property.  It's been a focus and exploration of bringing my attention into life's small and simple things.  No grand vistas here!  And digital photos are super easy on the brain... at least the one's I'm taking.

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