Them's the Breaks

It has come to my attention that I am supposed to stop doing things BEFORE I feel tired.  It's been hard enough to stop doing things when I feel tired.  But BEFORE? Is this possible?  Do I have that level of self-discipline?

It's me, in a hubcap

After sorting through a web of ill-informed general physicians and recalcitrant insurance companies, after Huck addressed their illegal behavior of not having any neurological support services on contract within our region, after they fixed this issue, I finally got to see a Speech Therapist yesterday.  Just in time for the building's alarm system to go off.  And so I started crying.

Aside from crying, I seem to have the mind of a man these days.  My day is filled with forgotten details. My day is good, or bad, but why exactly I've labeled it doesn't concern me.  I could put a lot of effort into retracing my steps to figure out why I didn't like, or loved the day, but why?  My emotions have no complex, interwoven story behind them full of history and hopes and fears, at least that I care to remember.  I just suddenly feel like crying.  I'm suddenly sad.  I'm inexplicably happy.  These emotions come and go like breath, all of their own accord.  So, I don't know why the alarm made me cry, it just did.

It could be that sounds are harsh.  Everything feels loud and my ears are actually tense.  To amuse myself during this low functioning time, I've spent a lot of time rocking in the rocking chair, staring out the large picture window in the living room, and listening to music.  It's not every 30-something mother who can fully justify just listening to music for hours on end and doing nothing more, not even planning dinner. I can't listen to just any kind of music, I can only listen to single instrument music that goes very slowly.  The amazing thing about my Speech Therapist (who gets a respectful capitalization, like President, or Queen) is that she knew this already.  And the instructions she gave me actually include working on my ability to listen to music, step one being to listen to single instrument instrumentals and slowly moving into songs with vocals.  I've dabbled in those a bit recently, but it's been about one song a week.  Even working on music comes AFTER learning how to stop doing things before I feel tired.  Which reminds me that I'm starting to feel tired.  I am going to be a big girl and step away from the blog for a minute.

And I'm back!

Chocolatey Claire will now eat out of my hand

It's true.  I spend an inordinate amount of time laying around still.  At first it was all spiritual feeling and refreshing.  But after four months, it's just depressing and ineffably boring.  Seriously. I don't think there are really the words to actually eff with any accuracy how boring this experience has become. But then there are these days where the sun shines in my head and there's clarity and energy and there's four months worth of desires to be pursued.  There's gardening and my new-to-me mini-tiller I've enlisted in the fight for flowers and fruit against my persistent lawn.  There's flour-less chocolate cake to be baked.  There are friends to conspire with.  There are children to enjoy and advocate for.  There is a big giant flow of life and I've been waiting in my backwater, gathering scum and frog eggs while everyone and everything courses past me with glee.  How can I resist when the energy touches me?  I am a lover of life.  I do, I stand out in the deluge of spring.  I do, I love to plunge my hands into loam.  I do, I love novelty and to go where I've never been and to explore this world's nooks and crannies and to kiss the sky and the dirt and the colors of every thing. And so how can I not dive in when the river looks so lovely?  Who can stand on the edge of this churning ocean, full and generous with life, and not jump in, clothes and all?

To complicate my restraint, I am very goal oriented.  I envision and I accomplish and I do not rest until I see in reality what I saw in my mind, or better.  I see flowers, I plant and nurture flowers and weed and till until it comes together.  I see a story, I write it until it's done.  I see my house in colors (and since my injury colors are even more intense and emotional to me) and I can't rest my mind or body until the colors all come out right.  If I love it, I'll do it until it is done or I hate it, beyond tired, beyond exhausted. I've learned to work a little more with the flow of inspiration and desire, to not push.  But when the desire is overwhelming, I'll overdo.  And this is now my undoing.  Where once my goal-orientation was a huge asset, propelling me through school and great job performance, it is now my largest liability and feels more like an compulsion, an addiction and a disease.

Since I hate housekeeping, I have learned to approach any mess or upkeep with a timer.  I set it for the most amount of time that doesn't make me feel like I'm wasting my life, or fill me with loathing, 10 to 20 minutes usually.  And then I work efficiently until it's done.  I've shifted the focus of my goal from a spotless space (which takes a depressing amount of time to achieve) to completion of  a set time.

 Ooop!  Break time!

What the hell are you looking at?!

The key for healing will not be to become someone else, no matter how badly I want to be someone else some days.  But to accept my basic motivating operandi and trick it into doing the thing I need it to do.  So my ganas goes not to completing something, but to the rhythm of healing, the stop and go, to quitting before that blank sensation ripples through my head.  My goal is timed reading, timed writing, complete breaks in between.

My TBI has been an unwelcome intrusion thick with frustration and difficulty.  But I can also see it as an adventure, an exploration of myself and new sensations, an experiment with approaching life differently.  I have felt loved and cared for.  I have seen the world from the eyes of a person with disabilities.  I have met incredible TBI survivors.  I have meditated the hell out of my days, quieted my mind with emptiness so that instead of a burbling cauldron of thoughts where I'd try to stuff good ones in among the crowd, it's been emptied and the best ones have tumbled in and found plenty of space.  I have learned to recognize "spiraling" and step away from it.

Statistically, my chances for a full recovery are wonderful.  My Speech Therapist tells me that all my IQ points are still there, they just need to be resharpened and reorganized.  Honestly, I have never been called on to use all of them and the extras have been causing problems, so I was actually kind of happy about bringing it down a notch in my head, but she tells me there all still there. I hope we can figure out a good storage arrangement.

I've been through two months of deep fog, two months of processing problems (which were frankly worse than the fog which I still kind of miss), and I've got about two more months of relearning to process with a Speech and Physical Therapy which will teach my eyes and ears how to filter out the crap again.  Then I probably have another 6 months of building stamina and strength and that could stretch on for a year or more.

so much depends upon a red wheel barrow

In the meantime, I do enjoy the humor my mind creates.  Like doing the exact same grocery trip with the same list twice.  After I stuck the bags from the second trip in the back, I sat down in the front only to find I'd put the bags from the first trip in the passenger seat.  Yesterday afternoon I was trying to tell my kids I'd purchased apples for snack but what I said was, "I bought some wild flower mix for snack today." I'm sure my family could tell more tales but that's all I can remember for now.  And rest.

It's Time to Play

A long long time ago, I had one dollar.  That was it.  Even in those days it really wasn't enough to buy anything other than a lottery ticket.  I'd never bought a lottery ticket. They'd said gambling was wrong, and it's not a great fit for my nervous bits that hate too much suspense and risk.  But lottery didn't feel like gambling, and lots of people did it, and didn't seem to be too bad off.  On the other hand I'd heard lottery called "taxes for people who can't do math..." which seems pretty terrible. I'd also read a Readers Digest report about the super high suicide rate among lottery winners because it turns out all their problems weren't about money, they were about them.  And also, they can't figure out where they fit in with society, and people use them.  It turns out to be pretty depressing. And so I bought my first lottery ticket.  And I did not get hooked.

desperately seeking signs of spring

A few years ago, a friend was recounting to me how she'd won the lottery, paritally, about $60,000, "Which pays some bills, you know."
"Ooh, that sounds exciting!  How lucky!  I wonder if I'll ever be lucky enough!"
$60,000 couldn't possibly ruin your life.
And she says, "Well, I know you, and I am certain you don't play the lottery.  You know, you've got to play to win.  It's true."
Ah yes, the age old problem.

So that's how I started my once a month, one ticket gambling addiction.  I only buy the low payout tickets, so if I do win, it just helps without hurting.  Even with such low stakes, it's been a heady mental work out.

look at February through the eyes of love and you will find signs of spring

First off, there's the probability issues.  Yes, I do know, as Huck is prone to repeating, that the probability is really small.  It's smaller than getting in a car accident while picking up my kids from school, and yet I still do that activity... wait... I think that's the TBI talking... I'm not sure that idea is working in my favor. But the truth is that someone is going to win, and it could be me.  With Huck's preferred lottery-playing method I will never win, am guaranteed to not win because I never bought a ticket.  The other method, buying a ticket, increased my odds by how many times I don't know, because any number times 0 is 0.  But it increases it from 0 to something, which is more likely to win than nothing.

The weeping willow is the first to dance

I was reading the Abraham-Hicks stuff last year because it seemed like a woo woo version of Learned Optimism and there were some good nuggets of truth.  But I've never been so stressed out as when I was trying their methods.  They were saying everything that happens to me is because I'm putting that energy into the universe.  Now, I suspect that is true for many many things, but it has logical limits.  I would be having one of those days with kids puking, cow sales falling through, dishes sliding off previously sturdy shelves, windows breaking and I'd be thinking, "Okay, this is all caused by my thoughts.  Now HURRY UP and figure out which one before someone gets killed!"  But then, the whole Law of Attraction theory truly jumped the shark when the book claimed that the holocaust victims brought it on themselves, and children born with congenital deformations did it on purpose so that they could experience life from a unique perspective... um.... did some one ask their moms if they were up for that?  It's all too Ayn Rand for me.  Everyone gets what they deserve.  No room for compassion.  All love is tough love.  The universe is an unforgiving energy, just like Old Testament Yahweh.

I explored the lottery with their theory that the only reason we don't win the lottery is because we don't believe we will because those statistics have poisoned us. Math as poison? Truth as poison? That's how the universe views math and truth? The LAW of Attraction is greater than math and truth? But I tried it, I bought my lottery ticket and tried to overcome truth-math poison.  But I was only able to win $1.  Oh, we of little faith.  The fault was entirely mine, of course. Augh: the shame of not winning!  My faith is so weak and powerless over math and truth.  I guess I'm just not attractive enough to win the lottery, I'm just one of 2.7 million lotto losers.  How can we live with ourselves?

class reunion in the works

The way I dealt with my epic failure to control the energies of the universe was by returning to the Buddhist methods for dealing with life: letting it unfold in whatever way it will without overly trying to control it.  It may not be a method for winning the lottery, but for gaining peace of mind, it seems to work a hell of a lot better than the Law of Attraction.  Now I buy my monthly ticket  ... I don't know why, but it's not to exercise my will over the universe.

Post Abraham-Hicks: what I now do for the few hours between purchase and loosing is the same thing all the other losers do: imagine myself with lots of money.  I fall down this fantastic jewel encrusted rabbit hole. Apparently this is what is meant by "play," because I can't imagine that saying "One quick pick Hit 5, please," to a clerk is much of a game, or much fun, or could possibly be mis-construed as "Playing." In this fantasy hour, we get swept up in the story: "It was just a whim... picked up the ticket with my hemorrhoid cream that day...and now, qui sait, mi amore, hop in my Lamborghini and let's find out."

So where does my imagination run too?  What wild fantasy? First: pay off my creditors: student loans, car loan, house loan (if I get that much!), the credit card.  Second: put money away for college tuition for my kids.  THEN!  Save money for retirement.  At this point I take an honest look at my lotto choice and realize that the one I'm playing could maybe pay off the card, at best.  I haven't even gotten to the vacation to Denmark, Norway and Holland.  Or Huck's pick: Australia.  What about that nice wool coat with the peacock on it?  And damn it, I still can't buy the lot next door! or a new fridge not held together with duct tape! or a big red barn!

It turns out I don't actually need to win the lottery to get depressed about it because at this point I realize that my financial dreams, my big lotto fantasy, is to pay off debts, save money, and buy a new coat.  Yep.  Those are apparently my big dreams.  Not to start up a new company or non-profit.  Not a scholarship for pastor's daughters rebelliously studying liberal arts at a secular university (there are no scholarships for such folks, I looked.)  Not a new wing for the library. Not jewels. Not even a congressman.  Nope.  My dreams are little tiny things with interest.  And that is just sad. I apparently already have every mediocre material thing I want out of life and now I just was them to be paid for.

 Bell Pepper in Spring, the lucky winner!

At this point in the process, it's time to check my numbers.  And I shuffle over to the computer, hunch in my chair in classic shame-posture and punch in my numbers, heavily, knowing I didn't win and likely never will.  And I feel shame that I wasted another dollar.  And that, people, is called "playing the lottery."  It's a predictable, low anxiety head-game.

Champions, we are

Well, aren't we the trumphant little crew here these days!

Blue's team gets First at Math Regionals!

I actually returned to a board meeting, which I was somewhat scared to do since the last one induced a seizure.  But this time I left when I felt tired.  It was pretty thrilling.  I'd told the crew I would do that.  And then I did.  The level of self-awareness and self-care necessary to stand up 3/4 of the way through a meeting, in the middle of a discussion I was really invested in, was record-breaking, in my record book.  That seizure shook me from my denial, from the hope that I could just push myself to be better, healed.  Awake finally, I understood the order of responsibilities and the weight of caring for myself.  And I stood up, left, and I went to bed when it was time, and only I knew when that time was.

Odyssey Math is Cool Champions! On to State!  And yes, Blue is the only white girl on the team.

I saved up my energy next for Blue's Regional Math is Cool Competition.  I wore earplugs into the gymnasium full of screaming and smelly (really, you probably didn't realize how much stink you produced in your preteen years, before you started caring about that sort of thing, but it could knock your socks off.  A few years ago, I saw a friend driving middle-schoolers home from a dance, with her window down and her head outside and I thought she was being a overly dramatic, turns out I was just blissfully ignorant) sixth graders to dull the noise.  The awards ceremony was blessedly short this year and soon they were announcing the top five teams. 5th, 4th, 3rd all shrieked and ran to get their ribbons.  Then they announced second.  And the Odyssey/Libby (Odyssey is the program that schools kids in a building called Libby Center) kids stayed seated.  I was soooo nervous.  I began crafting a speech about win-some-lose-some, personal value has never been, and cannot be expressed by awards... basically the same speech my mother gave me about every freaking awards ceremony I have ever ever been to.  I attended a Christian high school for two years and they actually gave out awards for spirituality! Personally, my reading of the Bible was that our awards would be in heaven, but if they wanted to swap that eternal gold and crowns shit out for little paper certificates, who was I to judge?  That's what my mom told me every year.  I did once get an award at summer camp when I was about 11 or so: Best Smile.  I hated summer camp, FYI,  and I knew that was the biggest BS award ever because my smile was so legendary BAD that my family actually CUT ME OUT OF A FAMILY PHOTO because of it. I got that award because my dad was always camp dean.

Anyway, there we sat, hearts pounding, poised on the edges of our grooved metal bleacher-seats, scarcely breathing. although I'd watched Blue's team smack down every single opposing team in college bowl by very wide margins and yet I wondered

... and the First Place Team is ... Libby Center!  Whoo-hooo!

We don't yet know if Blue will be on the team that goes to state or not, that's based on the individual test scores.Update: Blue tied with another kid to be on the 4 member state team, but lost the tie-breaker, so she's not going, sad sigh, but she got to go last year.

And then, here's where I surprised the crap out of myself, I attended an 8 hour blogger recruitment/training schmooze-fest at the Spokesman-Review.  I gave myself permission to leave at any point, to go somewhere to close my eyes, to go home if need be, whatever.  I was not expecting myself to make it all day, and then I did!  And I even stayed afterwards to "network".  It was awesome.  There were several editors, many reporters, Edward R. Murrow/WSU professors, photographers, etc, all there to give us a crash course in journalism so that they could have access to more writers.  I loved hearing from reporters about stories I've loved including this one where the city of Spokane agreed to an illegal settlement, had my family laughing all morning back in April. I felt  incredibly privileged to be selected for this inaugural rural journalism training. And I think it's a pretty innovative idea, spearheaded by the Seattle Times, and spreading east, like the flu, but better. I felt kind of bad about resting my eyes and shutting out visual stimuli periodically.  As a public speaker, I know how disconcerting that is to see people who look like they're sleeping, but now I know, from having been that person, that maybe that's just how they listen best, or maybe they are brain injured, or maybe they are sleeping.

On the garden/roof at The Spokesman-Review, schmoozing with fellow gargoyles

There were a few terrifying moments when I was talking, noticing that I don't have my chatty funny-bone back yet and that what I was saying made no sense, or was an opinion I'd held 4 years ago but because of my time-warp mind I was saying it like I believed it now and that underscored the danger of leaving my hovel in this most confusing concussion era I'm calling TBI: part B.  I can now sound like I'm making sense, but I might not be.   This has created a lot of friction in my home and confusion and misrepresentations.  My facts I've got pretty straight, my opinions are kind of a hit-n-miss oddity, my emotions are drunk drivers.  I'm still stuttering some and slurring a little, but my hand-writing is back, as is my typing.  Reading is bit by bit still. And I occasionally still blank, prompting people to advise me to go to bed.  But as long as my words are stringing together coherently, the assumption is that I'm making sense, and thinking through what I'm saying, but that would be wrong. 

Fresh off this stunning epic-concussion-win, I decided to go to church again, and when I say "church" I mean that is the loosest way possible: Unitarian Universalist Church where we sing hymns like John Lennon's "Imagine."  But I should have been recuperating from the day before and fled as soon as I got a chance.

Gargoyles of Monroe St.

This was all made possible by a visit from Huckleberry.  Visit?  Yes, that's what if feels like at this point.  Back in August I  agreed to a six week out of town job, two weeks on, one week off, spanning November and a week on either side, no concussion.  Instead, what I got was four months with a TBI.  Engineers are really great at calculating everything but time, apparently.   Every time Huck's back, I make gains as he takes care of the details.  But when he's gone, I backslide, as the stress of remembering everything, kids and chickens inclusive, saps me of energy I need for healing. I knew his absence would be challenging as we usually act like a team and it's hard to stay in "the game" when you only have half a team.  But the TBI brought the challenge to extreme levels.  Thanks to great friends for helping me survive.

Huckleberry, the facilitator

We celebrated Chinese New Year and my new found freedom to access the paint closet
with a freaky little ceremony the kids thought up and Huck facilitated.  It involved a burning circle of dried up mullein torches in the front yard and looked dangerous from my perspective and probably satanic from the perspective of those driving by, but whatever, so long as the kids are happy, I guess.

Coyote

Blue, the astrological Snake, lights a torch for the Chinese Year of the Snake.

So, I'm going to go take a celebratory victory nap now.

The Betterment

I felt kind of bad about my last blog post.  It seemed to be such a downer for people. I prefer to be amusing not depressing. And I'm also nervous about how much of my situation I revealed to the world.  So I've reviewed my motivation: I want to be as honest as I feel comfortable being.  I don't want other people to go through this and think "Sarajoy was a TBI rockstar with an incessantly positive attitude, she was like the Cheerios of TBI.  And look at me, I'm a crappy, soggy, sinking mess!"  When the truth is, that although I can feel great sometimes and have found really awesome treasures in this experience, there are terrifying and scary moments I'm not going to pretend away.  People always say that people "bravely fought cancer", but after knowing a few people who have, and have had moments of sheer screaming terror, I wonder how they feel thinking that some other people supposedly didn't, others were supposedly placidly brave and stared into death unflinchingly, and here they're flinching all over the place.  Or we hear about an old couple, "It was always pure love with them.  Such a love story!"  And I wonder, when Huck and I hit rough patches: ah, we suck.  This doesn't feel like much of a forever-in-love story.  Are we doing this wrong or are we doomed or is this reality and those stories are just clouded-up memories and fairy tales?

The other thing is that I've known a few people who have attempted and/or successfully offed themselves because they were ashamed of their medications and decided to go off them.  Would I then perpetuate this shame-culture by participating in it? Silence = Death in so many illnesses, especially mental.  It's destructive and dangerous for us all to be pretending we don't need help, chemical or otherwise, when we do. I'm not suggesting that we all write nerve-gratingly annoying memoirs of Celexa-Nation.  I simply want a little less shame around taking meds so that those that need them continue to do so.  Please, everyone, stay on your medication!

However, after posting, I was put in contact with a bunch of local TBI support groups and after talking at length with their founder I discovered that regular doctors always prescribe these kinds of medications but a TBI physician never would.  That's because the re-mapping of my emotional brain-universe needs to be done "by hand".  If I use meds, then the problem still remains and will be waiting for me whenever I go off them.  This inspired me to not take the longer term medication (but I do have a pocket full of emergency meds), dig up all the tools I've been taught before and to work my way through them again.  I'm also comforted to hear that re-mapping does come to completion at some point, for most people, the rest ... it's not pretty.  So, thanks to my honesty, which I found a little scary, I was put in touch with a ton of people who have been through this and whose collective knowledge is greater than my general physician's.

And I am beginning to wonder if perhaps my expectations for thought clarity are a little too high.  Have my thoughts ever really beamed in 100% clear, logical, and consistent?  Haven't I always muddled through. Don't you?  You think one thing and maybe travel down that path for a while, then realize you've forgotten to include obviously contradictory data and then right yourself.  That's pretty normal, right? Like learning to downhill ski, I think I'll put the breaks on, make the pizza pie out of my thoughts and slow them down until I'm confident of my ability to control my direction as well as can be expected. I hope that if I check in with them for validity often enough and keep them slow enough to be able stop if I start careening into a tree or off a cliff, then soon I'll be proficient enough to slollum speedily down once more.  And my blog has always had typos and missing words, right? So perhaps I'm not doing as bad as I thought I was.  I maybe be a lot better than I was thinking...har har har.

I still tire easily and unexpectedly and disappointingly.  But I am much more hopeful that I will get through this TBI: Part B experience and will get through it well enough.