Wednesday, February 13, 2013

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.

Sunday, February 3, 2013

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.

Friday, February 1, 2013

The Chemical Bath

this is what fog looks like
I think I should stop talking about my concussion, but it is pretty amazing, long lasting and terrifying and constitutes the whole of my life, still. 

There have been some great moments, the fog felt like it was lifting.  And I was all: Yeah! Brain!  Can't wait to see you again!  Yeah!  And now I want to pull the shade of fog back down, because what I've seen is terrifying. It's not the old brain.  It's a brainy 25 car pile up that's going to take a while to clear.  All those coping mechanisms developing since 2? Gone.  All the therapy for phobias and low self esteem? Gone.  All the higher level emotional processing: gone.  The routes for stress and emotions are all destroyed, bombed back to the stone age.

the one non-fog day in January
 I know that before, I was all: gonna build the best brain ever!  Gonna use all I've learned to rebuild crap into awesomeness!  And now I'm all: just give me some working pieces back, please, old ones are fine.

I am experiencing more thoughts, but I can't tell if they're working or not.  They look like thoughts, smell like thoughts, flow and have words and values like thoughts, but they might not actually be thoughts.  They twist and dangle and look like balls of tangled Christmas lights, like a rubiks cube that's been "solved" by moving the stickers.

My brain is also experimenting with chemicals, like bad boys in an unsupervised high school lab: "What's that do?" "Dunno." "Let's dump it all in and see." "Cool."  I didn't mind the random doses of euphoria and joy.  But the buckets of adrenaline dumps are intolerable, literally.  It's not me, it's some chemical bath that floods me.  I'm like a negative in a darkroom. And apparently this is common with concussions, as the brain tries to figure out what it's doing again.  In the mean time, apparently I need some drugs to regulate it all.  And a special psychologist, because there's not a lot of correlation between the thoughts trying to form in my head and the chemicals my body is producing, it's not a normal connection that a therapist can help with.  And if yoga and meditation could help, they might have started doing so by now, since that's pretty much what I do all day.

There are, however, a lot of really fun things this concussion produces, and I am glad to report they are normal, for concussions. I love the harmless, amusing party-tricks of my scrambled sensations.  I put a hot pack on my stomach, but I feel it in my lower back and it's hilarious.  I also don't feel hunger and it took me a few weeks to figure that out.  I just eat when the clock says so. Or I eat when my head hurts more than usual and my stomach hurts.  This didn't work out well when we all got the stomach virus the one week Huck was home in January...I'm working so hard to refrain from the gory, improbable, horrifying, and entertaining details...aughghghgh!  Success!

hoar frost/ frozen fog on a sunflower head, far prettier than my head
Another concussion benefit is that I must develop some serious self confidence.  I can't control what I can remember or can't, what I can read or do or when, if I can speak that day or not, if I'm exhausted or not, what time of day I might have energy or not.  And there are some people in this world who are still expecting something from me, and they are wronger than wrong.  If you expect something from me, that is completely your problem.  And it may seem that if I could do X,Y or Z, why can't I do A, B or C?  Because I can't.  I don't get to control it.  And it may seem that I "should" be able to do this or that, and I agree, but that doesn't make it so.  This situation requires that I be completely in touch with myself and my capabilities from moment to moment (and I don't want to miss a moment when I could do something!) and then clearly state that to concerned parties. This is a skill I am very happy to build.

And that's all I can do today, whether we like it or not!

Tuesday, January 8, 2013

Interview with Life

Huck models proper Christmas posture
Today we have a special guest.  Boys and Girls put your virtual hands together and give a big e-welcome to That Energy/Force That Makes Shit Happen!!!  You may know her as The Universe, or God, or That Which Cannot Be Named.  And She's here, right here, ready to answer some questions.

Anonymous Interviewer:  So, Life, What's up with today?  I think, on behalf of Sarajoy, you've got some 'xplaining to do.

Life:  Listen, I'm tired of that cry baby complaining that life is so so boring.  She does it every year at this time, all through January and February.  Now I ask you, is that some way to start the New Year?  And Boring?  Boring?  I've been tossing crap, good and nasty both, at her for the past couple months.  Can't she see past her nose?

AI:  I think maybe she's feeling like she's boring and her life is boring.

The neighbor geese live it up
Life: Hell yeah, she's boring.  She's laying around ALL freaking day doing nothing.  It's called "The Ebb," and I invented it.  It goes nicely with "The Flow" but they have to take turns.  So, she's in the Ebb, so big freakin' deal! It's part of life and everyone's there some times.  And I've been trying to help with tons of excitement that she says she craves but she just doesn't want once she gets it.  What does she think "excitement" means?  I'll tell you what it isn't: calm. And it isn't boring.  You've got plenty of time for all that when you're dead. 

AI:  So, you feel like you're helping her?

Life: Uh... yeah.  What does it look like?  And I keep trying to tell her that life, that I (frankly, it IS ALL about me!) am interesting no matter what she does.  She is not the originator of novelty, she doesn't have to instigate to experience.  She CAN lay around all day nursing her poor little booboo noggin and I can do all the work.  Examples: 
*On her first day out she found the wallet of a man newly sprung from prison who then roughed her up. EXCITING!  And she learned a lot about it which she hopes to blog about soon. 
Oma in Christmas stockings
*Then, for Christmas, her mother-in-law bought her a new oven, not just any new oven, but the mother-in-law of all new ovens, a double oven with a glass top.  It's beautiful and extravagant and wonderful and when Sarajoy's extended family came for Christmas, they used every part of it several times a day.
*Then two days later, her 40 year old dishwasher (the machine one) exploded and she got a new one to match the oven.  And she's spent two weeks doing dishwasher experiments involving baked on pesto. Her new dishwasher cleans so well and so quietly that she's having a hard time leaving her kitchen to get rest.  And she's suddenly realized that perhaps the reason her kitchen used to be so messy is because her tools didn't work. 
*And did I mention her family came to visit?  They planned, cooked and cleaned up every meal and also cleaned all her floors.  Christmas was awesome. 
The floor sweeper and the chef
*Huck took 11 days off from work.  And the first 1/2 was exciting for all the right reasons and the second 1/2 was exciting because they were all sick of each other.
*She got to go to a mellow New Years Party and celebrate New York style, not even missing her bed time. 
*And she watched a sledding party from the window with her wassel.  
*But then she went to the Board meeting last week, because she was "bored," she cried.  Boohoo.  And she was so exhausted when she got home she had her first ever (and only!) seizure which she thought was an major earthquake and she said, with less sadness than she felt was appropriate: "Ooops, there goes Seattle, Sploosh!" And now she has to go to neurological rehab.
*She got enough energy to go to Kellogg to visit Huck and discovered one of the best restaurants in the Inland NW: The Moose Lodge, despite it's name and font and mascot, the food was surprising, perfect, made from scratch, AMAZING.
* Her 92 year old grandfather died too! She's in no condition to haul 2 kids over snowy mountain passes 14 hours round trip, for a funeral, but she did contribute a well appreciated poem that was read at his funeral.  Yeah, 92, not surprising, but she'll never see him again, so it's still sad.  And what's more change/flow/intensity than death, eh? 
Christmas morning, with fog
*And yesterday there was two feet of snow and kids to pick up from school anyway.  I mean, what MORE does she want?!?!

AI:  So you're saying her life is not boring, nor can it be, even if she is not an active participant?

Life: Duh.  This whole thing started when she was STANDING in the doorway between the unbelievably unthrilling rooms of kitchen and dining.  I mean, the girl wasn't snowboarding, or skydiving, or even having wild sex.  She was STANDING!  Which pretty much says it all right there.

AI: Explain this morning.

Coyote wears his favorite jacket for the 3rd grade musical
Life:  Listen, if the cow-in-heat hadn't escaped looking for a bull, then Super Neighbor Dave wouldn't have almost hit Claire with his SUV. And he wouldn't have gone to Sarajoy's house to tell her about it only to hear of her head woes and how she was incapable of dealing with this problem.  If he hadn't then graciously herded the cow back to her farm where she got it in to the barn, he wouldn't have been around to sheepishly ask, if he had a few extra minutes, to help her jump her car because her son had not shut his car door the night before and the battery was dead.  And if he hadn't done that, then who would she have asked to help tow her car out of the snow bank that she slid it into last night?  It was exciting.  It was fun!  But Sarajoy just crawls back inside, takes off her barn boots filled with snow because there's more than two feet of it by now and so it piled into her boots.  And she goes and cries in the bathtub.  Shit man, you just can't make some people happy!

AI: So you were just trying to make her happy?

The two on the left are no longer with us.






Life: The girl says, "I'm bored. I want something exciting to happen!"  Something exciting happens and now she's all, "That sucked!  What the hell is going on here!  I quit!" Boohoo. Go take a nap you prissy little sphincter.

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