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.

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.

Don't Have a Cow Woman

Claire and her hay say "Buh-Bye"

There are some things I will miss about no longer having cows.  And there are some things I will never miss.

I will miss sharing my garden extras with my eager bovine family: corn, corn stalks, apple pomice, onions, kale and also kitchen orange peels!  I will miss the hilarity and pure joy of large dancing cows in spring.  I will miss the tender baby calves slipping out into the world. I will miss pure, raw milk.  I will miss the odd sense of identity I found in being the only person I knew with a family milk cow.  I will miss the large brown eyes, rolling in circles to see it all. I will miss naming my cows: Hendrika, Sukey, Ginger, Beignet, Chocolatey Claire, and Yoda.

Hendrika and Sukey

I will not miss having to make hard choices every year about who to keep, who to sell, who to kill.  I will not miss trying to amass a chunk of change for a years worth of Timothy-grass-free hay (Timothy Grass puts Huck in to anaphylaxis... so you see, it's kind of inconvenient) and trying to time it right: after it's been harvest, before everyone else buys it.  I will not miss tripping over baling twine in the barn.  I will not miss cows in winter and sick cows, or the constant fear that I'll need to call a large animal vet out here (because I don't have the truck or trailer to deliver a sick cow to the vet) and since they live so far away and charge by the mile, by the time they'd get out here, before any treatment, our budget would be busted. 

I will not miss killing birds with my electric fence.  Example: I pulled my Spokesman Review from it's yellow road-side house and turned back to my house one recent morning.  And that's how I saw the Harrier's hawk, diving through my field, close on the heels of a group of house finches.  The finches easily flew through the hogwire fence, but the hawk could not.  So it slipped up, and landed on my electric wire.  Being too large for such acrobatics, it wobbled, connected with the hogwire, flailed out it's wings and plunged forward where it hung upside-down, sizzled feet still clinging to the wire.  I screamed and ran in my slippers to unplug the fence.  Even without electricity, the hawks hung there, wings unfurled and upside-down.  Devastated, I collapsed on my pile of useful pallets and mourned.  My farm, basically me, killed a beautiful bird.  All for the cow. How many birds would this cow cost? Would I bury it?  Would I call animal control to remove the carcass for me?  Would I have to saw off it's scorched claws to get the body?  I certainly couldn't leave it there, a coyote-popcicle.  I would feel like shit for a couple days.  Actually I would feel like shit for the rest of my life about this, whenever I remembered it.  I stood from my fetal-like-crying-pose to see if it had fallen off the fence and at least I wouldn't have to operate on a dead hawk.  But it was gone.  I walked the whole fence line.  The bird was gone.  Maybe just to nurse it's singes and die in privacy, away from the prying eyes of taunting finches and the devil's own farmer girl.  Or maybe to live a long, and smarter life away from human endeavors. For that one bird, I won't have to feel like shit for the rest of my life.  For all the others, yes, I will.

I will not miss the constant, and I mean constant, NEED to maintain my fence. At one time, I enjoyed it, but like all such chores, it was getting old. About a month ago, I dreamed that Chocolatey Claire had gotten out again.  I awoke a bit panicked, but realized I'd just checked the fence a few days before.  It must have been her heat-stoked moo-ing all night, implanting her in my dreams.  But you know what comes next, don't you.  You've read this blog a time or two.  And you know that after I returned home from dropping the kids off at school, I looked out into our field and there I saw Claire, well contained.  I went inside, got myself a glass of water and then noticed the neighbors car driving up.  I met him on the porch, "Can I help you?"
"I think that's your cow down the road."
"Oh, that can't be, she just out there in the...."  No, that CAN be.  With cows there is no "can't".
"Is there anything I can do to help?"  He asked.
"At this point, No.  I don't even know what to do.  She's in heat.  Jim's got a bull."
I grabbed my grain and headed out without a plan. That girl was running down the road.  She was already 1/3 mile away. Some of my outstanding neighbors stopped to help.  One just happened to have a couple riding crops in her car to help herd.  But I could see that Claire wasn't going home. We gave it "ye ol' college try and fail" until I decided to go with the flow and opened up Jim's fence.  Claire ran through, and ran and ran and ran across his field.  And within 4 minutes, we'd gotten a call that the girl had done got herself a boyfriend and they done consummated.  The kids and I went to apologize to Jim for the unexpected visit from the eloping horny heifer. And while we were there for ten minutes, discussing what had happened and what to do about it, Claire and his bull mated about 20 times.  And the other cows were all excited about the new arrival.  And so they got in on it too.  And it was a veritable cow orgy.  We are normally rather sanguine about farm animal copulations, but even I was wide-eyed.

I took a picture of the orgy.  Maybe that wasn't right.

Jim, yet another of my wonderful neighbors, got around to returning her to me after about a 3 week honeymoon.  She didn't go in to heat again, so there was some point in returning her to Lucky Farm.  And during those three weeks, I realized I didn't need a cow any more.  I didn't worry that the phone was ringing because my cow was a mile away, or the car in my driveway was there to report an escaped bovine.

It's going to be alright

Claire is a unique cow, a miniature, just perfect for our acreage.  She eats next to nothing.  She's the cow I originally had in mind.  Instead I bought what I could get my hands on, and bred her into existence from that.  And now that I finally have the cow of my dreams, I'm done. I could keep her as a pet.  But I'm looking at my life today, TBI and all, and she doesn't fit here anymore.  Honestly, I'd tried to sell her last fall when I realized my cow joy was over, but no one sane buys cows in the fall.  And now, I'm really in no shape for this kind of work.  Huck's not in to cow-husbandry it turns out and I respect that. I'm certainly not going to demand that he spend his 3 seconds off a week doing my hobby for me. So, there goes my perfect cow.  Let's feel sad for a moment:

(Sad moment)

But I am certain that when the time comes, if I feel like it again, the cow or pony or goat or pig or camel of my dreams will be there, waiting for me on Craigslist, when I'm ready.

That is the End, my friend

As for Claire, she's on to new adventures with a farming family of six, ready to love and treat her right.  I hope you enjoyed some parts of the link-retrospective of moi and my moo cows.  Now what am I going to write about?  Those chickens better get a lot more interesting!

Midstream

Coyote has a new teacher.  And it's not me.  Thank god.  I home-schooled him for 6 days, straddling spring break and it became obvious that I could either home-school him or get better (which is so depressingly slow, I can't even tell if it's happening or not), but clearly the both weren't going to happen at the same time.

the tool box he made himself

We'd had issues with his teacher all year, a few snarky notes home, and some bizarre responses to playground issues.  But, you know, teachers are people too.  They have bad days and get stressed out and have lots of pressure to perform while coping with nearly 30 (thanks budget cuts!) kids.  And I was in this fog (it's actually black, not grey, so maybe it should be called "outer space" instead of "fog") and so we let things slide.

a small rock in the fire pit

Coyote had been having issues and I'd blamed myself, as any good mother would.  It was my head injury.  How could he be happy when his mother packed his lunch with a can of olives and a socket wrench?  Who wouldn't have anxiety when their mother has to pull over every five minutes to rest her eyes and and stop feeling crazy with all the "zoomy stuff"?  All winter he was denied sports and Cub Scouts  (the decision to sign him up for that could fill several blog posts!) and skiing and having friends over and speaking in a normal voice winter because his mother can't drive at night or in snow and can't handle sounds, particularly the sounds of children having fun and/or fighting.  But then his anxiety was worse on Sunday nights and Monday mornings.  So... if it was me, wouldn't it have been worse all weekend?  We were reading books, developing plans, we had a list of therapists and brought him to the doctor to make sure there wasn't anything physical.

But then he says to me he thought he'd figured out what was causing it all: not learning anything at school.  Now that I'm a gifted-education reader-upper-er, I have some exposure to the research. Statistically, he should only be a few IQ points lower than his sister, and should match the IQ of his genetic contributors.  (Reminder: IQ does not make a person better or worse, it's mostly just DNA expressing itself; IQ has benefits and issues just like most traits; IQ is a cultural estimation of a complex concept.) Also, since he's second born, statistically he would be hiding it (since the family niche of brainiac would seem to already be taken).  This might explain why "the brightest child I've ever taught" in Montessori school never showed up for regular school.  And depression and anxiety are very common in underperforming, unidentified "gifted" children.

The Genetic Contributors

So, all that to say, that I wanted to rule out "underperforming/unidentified gifted" as our problem. So I opened up a conversation with his teacher about improving his opportunities for learning and initiate school IQ testing.  That was on a Monday. What followed was a string of unprofessional and snarky emails, most of which I didn't bother responding to. A bizarre "time out" on Wednesday.  The revelation that despite all A's and a fairly high standardized test score, she'd plopped him into the lowest track for reading and languages and there he'd languished all year, not learning anything.  She never told us. Embarrassed, he never mentioned it.  And I was in a deep deep fog/outer-space of disability.  And Huck was out of town too much this winter.  And then on that Friday she publicly moved all of the other children from the track 1 group into the track 2 group, leaving Coyote and the kid who's never ever done his homework in group 1.  Coyote: "I get 100% on all my tests. How can any of the kids who got moved up be doing better than that?"

And so we pulled him out.  And Coyote immediately returned to equilibrium.

looks like a head injury to me

Thanks to amazing advocacy from other professionals at his school (one of which is a particularly amazing friend), and thanks to the history of this happening last year in the same class, and that child was pulled from the school, the school somehow managed to clear the legal hurdles and do the right thing, placing him with a new teacher.  And now he's happy. And IQ testing has revealed killer mama-instincts continue to be one of the most powerful things this world has known.

Random Updates: I cut my hair in hopes of fewer headaches.  The pulling has stopped, but there are still these sensations all over my head.  I am trying to keep myself from shaving my head entirely.  I liked my long hair.  It was one of my favorite things.  And I'm kind of sad it's not on my head.  But also, it's just hair. People keep commenting and marveling on it's absence.  That's just part of the process, I know, but I can't wait until that part is over.

And my speech therapist was worried about why I wasn't making any progress, why the better I get the worse I feel, so she did some tests and apparently my vestibular system got shattered.  I start barf-inducing vestibular rehab on Monday.

The Opa-rator oversee-ing the BB gun

And spring break was awesome.  My dad came for a visit and rocked the grandpa role with b.b.gun shooting, bon fires, fixing every mechanical thing I own, putting up Blue's basketball hoop, making an amazing pot of Chiopino, kite flying, and all that.  My uber-busy mother flew in later and we all spent the weekend at a nearby cabin and I found out that I'm almost as bad at riding in a car as I am at driving.