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.

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!

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.

Holy the Traumatic Brain Injury

There are all these notes everywhere and it seems I've been thinking about writing more about my TBI experience.  It would be helpful if I could understand what I wrote.  But, alas, half the notes don't make sense and I can't tell if that's the fault of my brain when I wrote them or the fault of my brain as I read them.

I tried watching "Memento" thinking it would be cute to watch an amnesia movie at this point in my life. But I only lasted 10 minutes and became completely freaked out because it's a little too close to home.  Luckily I'm not a homicidal maniac... that I know of.

It's obvious that many brain cells are gone and pathways destroyed.  I can't put names and faces together well.  I'm still stuttering and slurring my words. I have entire weeks missing from this last month. But there's been these amazing sensations and moments. I hold a deep peace about what has happened.  The first week was surprise and fear.  The second and parts of third are just lost.  But throughout there is a thread of calm.  I think this was meant to happen, not in some sort of plot device way, not because this is the ONLY way for me to learn something (because I believe that whatever we learn from a situation is NOT that situation teaching us like some ass-hole professor who will stop torturing us once we "get" the lesson to his satisfaction.  Rather, whatever we learn from a situation is our own work, our own efforts. Be proud of everything you learn from your experiences because you are the one who did the work to gain that wisdom.  You didn't have to learn anything from that situation, but you did, you, awesome you, learned from crappy situations.  You are a force of nature, of compost.  You took rotten left overs and turned it into life giving food.  That you: Composter Extraordinaire. Evidence by theory is true: shitty old people who are big jerks who clearly have experienced many things in life and not learned from any of them.).  This TBI happened for a reason that is so embedded in the fabric of life it cannot be teased out. It is part of my life, my path and I accept it with this odd peace that withstands the frustrations and disappointments of missed board meetings, not being a contributing part of the Strategic Plan, missed opportunities, shelved personal goals, a deconditioning body and an inability to parent the way I want to.  But it all seems part of the whole in an integral way that feels right and good and simply beyond question.

My mind and body have never been more intertwined and obviously one as they are now.  I think, it hurts.  I hurt, my brain stops thinking.  It's abundantly clear when I've tried to do too much or think too long.  There's no question and if I went too far (which you have to do now and again to find where you're at) with mind or body, I just have to lay down immediately and fall asleep.

And as my brain has fallen apart, I feel this is a great opportunity.  Obviously this isn't terminal.  I'm not going to die.  I will clearly recover, though no one knows how long that will take, months to over a year.  So, I will have my brain back some day.  But I hope to build a newer and better brain as I recover.  I've spent ten years learning about optimism and habitual neural pathways. Since my habitual neural pathways have fallen apart, I plan to use the pieces to build better ones. Like compost, like legos.  The structure is gone, but all the pieces are still here and now I learned from the first shitty space ship I made and I'm going to make a better one now.  Perhaps this is just more evidence of my dented mental capacity, but I think my brain has not been this decomposed since my teens, a time when the brain patterns disintegrate and we rebuild anew who we are. That's the most recent research found in the book, The Primal Teen.

Of course, this might be tall order for a girl who filled her fridge with canned goods.  How could I expect to reformat my mind when I can't even remember what word I am saying. For all the peace, I've had some really negative moments.  And my social anxiety has built in to a crescendo of angst.  Noticing this, I was thinking "Damn it!  I'm screwing up my brain already!  When will I get it right?  Why can't I just get this stupid little thing?"  Well, double oops now, right?  Yeah, I better go a little easier on myself, not just now, but forever. I'll get it with time. And then... look at that.  There it was!  Positive thinking about positive thinking 

To stave off deconditioning of my body completely, I'm engaging in at least an hour a day (and additional hours of shavasana) of yoga, no inverted poses, just reclining, super slow yoga.  And I'm adding extended meditation sessions and I think this can only help with rebuilding my brain the way I'd prefer it to work. 

The other thing about the way things have been is that I've experienced the care and love of many people who wouldn't otherwise have had any reason to show it. Three friends in particular have really helped, have been the hands and feet of my well wishers who are either too far away or too swamped with finals or work to be able to help.  And since showing kindness is the most effective method of finding happiness, consider this concussion a gift to my friends!  An opportunity to show compassion where otherwise there would be none.  It has also been obviously wonderful and healing for me to experience the kindness of others.  I feel I can trust life a little more, trust people a lot more, and trust my friends to be there for me when I have need.  Just after I got konked in the head, I was telling my friend the story of the duck egg and how it was the first time I had ever experienced someone helping me puke (much less a stranger!) and the first time I had experienced compassion from my extended family.  And without the duck egg incident I might have gone on forever not seeing that people in general and certain people specifically care.  The same has happened with this. I felt very much alone until I blogged about it and within minutes help and meals and care and all that I needed were flowing towards me like a river released of it's dam.  One of the "reasons" bad things happen to good people is to allow friends and family an opportunity to show their love.  And here, it has been shown and witnessed and experienced.  Friends have redeemed the "bad" thing that happened into an opportunity to show love.

There is another "reason" bad things happen to good people that I discovered this week, but I will save it for another post.  Hope this was coherent-ish!  And now MUST go lay down.