Dear Bad Drag Queen: Thank You for Your Service

Spokane's Pride Parade is the best parade we've got.  The St. Patty's Day Parade is cold and just one long long advertisement for cement businesses. The Lilac Parade/Torchlight/Armed Services (it's got an identity issue) isn't about lilacs or light, it's about military military military and it starts after bed time. This leaves the Pride Parade which has little to no audience up until the last block or two and so it's kind of more political march than parade.  I love it because unlike some larger metropolitan area Pride Parades, it's a family friendly and fully covered parade (except for the guy wearing only chaps and a sling last year... my kids still bring it up in a slightly trauma-processing way).  I obviously wasn't going to march/parade in it this year. But I felt that I could maybe observe from the unpopulated early parts of the route. So we set up our lonely lawn chairs and watched.

And they loved us. They showered us with candy and appreciation as nearly the ONLY observers they'd yet observed. They pointed and waved at us and called out "YOU ARE CUTE!!"  Drag Queens and human rainbows posed for my photos. Tralalalala! The closest I've come to fun for some time.  And I posted some photos to Facebook captioning some queens mugging for my camera, "Everyone should be able to wear whatever they want whenever they want." I felt good about everyone.

The next day, the kids and I went to our neighborhood grocery store. I was struggling to function that day and I figured I could pick up what we needed if I brought along my new cane.

Some time ago, I had been prescribed a cane.  I couldn't quite get my mind around it.  A CANE?!  I'm not falling over.  I'm not blind. I'm not crippled.  I'm just off kilter and easily woozy and getting better. But it's because I've recovered some that I need it.  It's now time for me to bring my eyes up off the floor and start seeing the world around me again. Instead of using poor mental substitutes for a crutch to find and keep my balance, I should be using an actual crutch to keep myself up and moving.  It's a cane, not crutches, not a walker, not a wheel chair; just a cane.

I knew at the Pride Parade, if I was going to be able to walk in to the Pride Festival to find my daughter who marched with our church in the parade, I was going to need all the help I could get, so I finally picked up a cane at the drug store and headed in to the rainbow mayhem.  It was a revelation.  Suddenly my head had space. I could see things. I could hear things without going nuts. I felt horribly self conscious, but my mind also felt liberated to do some thing other than try to keep myself vertical... which was walk in and walk right back out.  But still, that's progress!

Back at the grocery store, I was struggling again to find peace with the cane. I felt awkward and conspicuous. And then, in walked our local person of drag. I can't tell if he is sincerely but inexpertly trying to be a she or if he is trying to look like a he sort of being a she; it's not a real thorough transformation. Plus, women who are 6 ft tall usually eschew 8 inch heels, so it's an unrealistic get-up. It is none of my business, I'm simply unsure what pronoun s/he would want me to use here.

On this day, it looked like maybe s/he hadn't changed for a few days.  Her butt pads were lumpy and her boobs were wandering in ways that reminded me of my 6th grade Halloween costume where I was a bubble gum machine with assorted balloon shapes contained in a clear plastic bag around my torso.  Her blond wig was tattered. And his usual cobalt blue mini dress was, as usual, making him/her really noticeable. S/he always stands out, partly because I've never seen a woman go grocery shopping in anything close to that outfit. For me personally, however fascinating and interesting a well done drag queen can be, I find badly executed drag unsettling, as I did on this particular day.

Accidental mother-daughter opposite-matching, with props

Coyote's mouth was completely open in shock (as were pretty much everyone else's).  And his eyes were big as dinner plates.  And I felt it would do no good for me to pretend we weren't all seeing the hot mess we were seeing. I had to say something. But what?! These are the issues we face in provincial little Spokane. What to do? What do say? It didn't seem honest to ignore the spectacle, which normally isn't much of a spectacle, but today she was really amazing.  I had massive internal dissonance.  On the one hand, you know, isn't it okay to hope that some care might be put in to ones appearance?  On the other hand, what was it that I'd posted on Facebook? "Everyone should be able to wear whatever they want whenever they want."  All we legally ask is that privates are covered, and they were.  Um... so who was I really?

I got down at Coyote's level, in front of his eyes, and said, "Remember, Everyone gets to wear whatever they want whenever they want.  And it's impolite to stare." 

I stood up. And I leaned on my cane, suddenly able to handle the store, the noise, the people, the music, the numbers and letters everywhere, for as much time as I needed to pick up the few items on our list, all thanks to my cane. 

And I realized that if S/he can wear slovenly drag, I get to use a cane.  And it's nobody's business if I do.  I can use a cane whenever I need to, or not.  I can use my cane whenever I want to, NEED or not.  I can use my cane for as long as I want, whenever I want, or not. I can use my cane for the rest of my life, if I feel like it, just for kicks.  I don't need to be "bad off enough" to justify it to anyone, even myself.  I love my cane.  It makes space in my brain for other things. And gives me a sense of security as I expand my horizons and test myself against new situations.  And that's the society you and I both want to live in, one where people get to make choices for themselves for what's right for them, and it's none of our damn business.  My brain.  My cane.  My right.

People's reactions to my cane have been almost universally great, probably the bad drag queen can't say that. Not much gawking. Customer service is prompt. People make way for me in a crowd. I feel less need to explain the confused words that sometimes come out of my mouth.  Only once, rounding a corner at the store, was it awkward. This woman and I almost collided and instead of exchanging mumbled "excuse me's" she screamed, "AAAHHH! Oh MY GOD. I'M SO SORRY.  Oh please forgive me. OH MY GOD.  I can't believe myself!!! AUGHH!!!"   I half expected her to thank me for my service.  In such a military town, it's a common enough phrase to anyone in fatigues or with a crutch. But, as a friend recently suggested, perhaps that's what I'll say next time I see our neighborhood drag queen: "Thank you for your service,  and thank you for the sacrifices you have made for my sense of freedom."

Three Little Birds Singin': Every Little Thing Is Gonna Be Alright

It was three minutes.  Three whole glorious minutes.  I was pumping gas.  John Cougar Melencamp was booming over the speakers... and music, damn music has driven me mad.  Music in the grocery store, music at the gas station, just so much noise, so much waste of air space, scratchy, muffled "music" pumped in to every effing second, for what? for why? To clutter my feeble brain? I've had earplugs in for months. Imagine this: every synapse of your brain is like a hiker who crosses an abyss on a bridge.  Many of my bridges got wiped out, so for nearly 7 months, my hiker has had to hike around the entire canyon to complete a thought.  It is exhausting work.  And every sensory addition is like adding 10#s to her backpack.  She may not make it at all.  But over the past several months, with lots of help, we've been building new bridges.  Postmortem dissections show that these new bridges can't go in the same places as the old bridges, but go in next to the old location.  Plus, in some parts, we may not be making new bridges at all, but employing Evel Kneivel type tactics to make it across.  In some places all the walls of the canyon have collapsed and we just need to find a whole new route across.  It's been difficult, grueling work.  And then, this one glorious afternoon, it all came together for three whole goddam, mudder cluckin' minutes.  Holy Holy Holy.

Blue took some lovely photos of her brother's haircut-torture

There was this rush: I will get better. I will be different, but I will be whole again.

And then this deeper rush.  I am alive!  I was never in danger of dying.  But I was in danger, since the beginning of time, of not existing.  Such a long, sacredly random twisting of events has brought me here.  Going back innumerable generations, just the right people getting it on at just the right time.  And the long long evolution of humans, the geological evolution of earth, and planets and suns.  The whole thing, miraculously lucky again and again and again.

It wasn't just the fact of being.  It was the fact of being me, that was the rush.  Throughout this journey, I have gone very deeply, very intensely into the realm of self-worth.  Every day, I faced the fact that I was crappy at every single thing I am and do.  Mother, wife, friend, conversationalist, lunch maker, grocery shopper, driver, all, every single thing, I could either not do it at all or if I tried I did it real shitty-like.  And that is when my Faith kicked in.

The first UU principle: the inherent worth and dignity of every person.  And among them, me.  I understood, and felt, what I intellectually trust: there is nothing I can do or say that could possibly increase my value as a person, or decrease it.  No matter how crappy I am at every single thing I do.  No matter how little I do.  No matter if I'm CEO of some company, or remain a stay-at-home mom for the rest of my life.  No matter what.  No matter if I steal your truck or kill your kid or save your life or give you exactly what you need, exactly when you need it, every single time.  It Matters what I do and what I don't do, yes. But it never will increase my worth as a person.  That is being.  That is our birthright.  Just for being born, I have value. You have value and all the things and recognition we work for could all disappear tomorrow and we would still have value. The universe consciously or unconsciously put in a lot of work to get you and me here. And I respect that work and believe it was worth it.

In over 8 years of cutting his hair, this one turned out the worst, BY FAR

And after this long, scary journey, after fully understanding my worth, what happened in those three moments of healing is that I understood how incredibly awesome it is to be me (you too FYI!).  I felt like I'd been born again and in that moment understood the crazy incredible thing that I have: life and being me.  And here I am again, after all this time.  Here I am!  Being alive!  It's incomprehensibly cool to BE.  I want everyone to feel this, to know this joy of existance.

And these thoughts, these feelings, were beaming through my brain with absolute clarity, like a new pair of glasses, a new prescription, where the forest suddenly has trees and the trees all have leaves.  And that is when I understand some thing else:  I have really been through something.  The thoughts, if completed at all, have been like swimming through molasses.  The losses of self and self-concept and companionship and goals and dreams and the losses of those around me, Huck's loss of his partner, the kids' loss of a competent mother.  I saw that this thing, this head injury, is no trifling matter.  I felt a deep respect for those who have stayed in my life, for those caught up in this tidal wave, for myself and for the work I have done and for looking this all in the face and curiously turning my injury over and over, inspecting the spiritual and physical and psychological aspects from many fuzzy angles.

Blue's Window Comic "Book"

And then I slid back into the mud.  And I kept sliding until I was in a fetal position for nearly a week. It turns out, I had a small rupture on an internal thingy and there was pain and pain medication and scans and all that.  And I was grateful that I did not have chronic pain with my head injury.  But then they told me I might have chronic pain forever.  And then I felt my number was up here.  It was an absurdity of dog-piling ailments and snowballing symptoms, but that's chaos for you ... sometimes you flip 20 tails in a row. That sacred random that made me, can also take me out.  But then the pain abated and I am fine for now, although a recurrence is likely.  And there was backsliding on months of recovery work, as it all got buried under pain and medications.  And I have to work hard on word recall again. But I know that those three minutes are out there. They are there and I will likely me mine again.  But for now, it is enough to remember them, to remember me, to remember being myself with clarity and strength. And to look forward; it's coming.  I'm coming back.  I'm going to be me, a different me, but me nonetheless, and it's going to be epic.

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.