what kind of blogger do I want to be?

These late May days are better in character than days were just a couple of months ago:  much less weird-a&& anxiety, more calm response to life, rather than the blinding brain-meltdowns of the recent past.  Recognition, learning, adapting.  Continuing stubborn.  Continuing to push the limits and just try.

I have spent about 5 hours reading around a blog I found through a WP Reader search for “brain fog.”   Broken Brain – Brilliant Mind, is one person’s catalog and commentary about his own several (!) brain injuries.  (The author writes anonymously, so I am choosing the gender.)

He chronicles his own brain-specific moments through blogging, but he has also organized a library of sorts.  Hence, the 5 hours of reading.  Followed by exhausted resting in the afternoons.

My last injured 15 months have been chronicled here, not intentionally as blog fodder, but out of need to make some sense of me through the art of writing.    For which I am deeply grateful now that I’ve discovered the battering my short-term memory took.

I began this blog because I simply had to write.  I still want this blog to be about giving an account of myself in discovering the world.  I am more than the walking wounded, but I do not do as much as I did back at the start of the blog in July 2011, so have fewer topics to wander around in.  I don’t want this blog to devolve into solely a traipse through a brain injury; although it will include those meanders, how much I don’t know right now.

It is apparently my time to discover and implement resources for healing, and especially, adapting.  One discovery in this online reading has been the documented phenomenon of cognitive fatigue.

Another is an entire book dedicated to “self-therapy” for brain injury, a thorough discussion of brain injury with the goal of creating one’s own healing process because we are the only ones who can know how things are working internally.

(Though, I am somewhat amused to be wanting to edit the book’s structure to make it more brain-friendly.  Hint:  paragraph breaks give us a chance to breathe and absorb!  Or:  my, that’s a lot of solid blocks of text there when your audience may have difficulty following!)

Those two finds alone validate my many months of solo journeying back from the brink and discovering a scrambled brain, where before illness was a very powerful, cognitively adept brain, able to learn just about anything (except calculus).

I’m tired out now from reading so much about brain injury.  Can I have a rueful laugh from the audience, please?

The answer to my blog post title is that my blogging and my life must be full of variety, so that is my goal.  I don’t yet have the how, but I will have faith that I will keep making the right choices in order to discover the steps back to a fuller life.

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swim 10 minutes three times a week

That wasn’t it and I crashed.

This is so frustrating:  predicting what is too much.   It doesn’t work this way, the way that would be quite helpful, thankyouveryflippinmuch:  somehow being able to measure energy available, like having a gasoline gauge glued to my forehead.

It’s like this:  one unit of laundry, two units of art, one unit of driving to the library, one unit of swimming, 5 units of sitting.  Now, how long is a unit?  I don’t know, but it’s so short that I’ve never done so little before.

How many units of what kind in a day?  All depends on the moving target.  I still get slammed against the wall of out-of-gas-and-on-my-way-down.

swimming and sailing 1965 and 1970.
The red patch from the Canada Yachting Association used to have a white fabric star in the first box.

Swimming has always been a joy–I even have the little buttons I earned in the 1960s to prove my proficiency.  Should have had a bunch of buttons to celebrate the silly grins from being in, on, or under the water.  I even love the Zen of swimming laps!

 with the Kona turtle and Humuhumunukunukuapua'a

hangin’ out on the bottom of the ocean with the Kona turtle and Humuhumunukunukuapua’a

Learning to dive in Hawaii (visiting from Alaska–mama ain’t no fool!) and having the dive instructor give me the stink eye underwater because I never wanted to surface.

He used to call me a gorilla/guerrilla diver–I don’t think I ever asked him which word he thought of when he’d watch me down there, cruising along in hog heaven, arms relaxed and moving quietly behind me in my self-made current.

Swimming has given me pause only that one time in frigid Lake Ontario after I helped to tow the instructional sailboat off the beach for our return to Toronto Bay.  Couldn’t get my 13-year-old self up the side of the boat.  Drowning was a definite possibility–but I did get help and survived.  <:-D

knock Bozo down and he bounces back!

knock Bozo down and he bounces back!

Now I try again, because that’s how I am:  I feel like that blow-up Bozo doll–you can slug him in the chops, punch him in the gut, or kick him in the nose.  He stands right up again with that silly grin.

True, sometimes he over-corrects and it’s a bit of an eye-opening ride on the return!  (He’s the only clown who has never given me the willies, too.  Please don’t tell me anything bad about the actor(s) who played him on the TV show.)

Now I’m trying 5 minutes of lap swim, which in my weakened state is only 4 or 5 lengths.  Then into the bubbly hot pool to stretch, so at least I’m in the pool longer than it took to drive there.  Maybe I’ll try twice a week and see what happens.

The crashes are so painful that enduring the addled brain-fog that shows itself in melty tears takes more courage than I think I have.

I face my vulnerability–an unlovely sight–and wobble forward again.

a bad day or two

I have devolved into being a raw nerve, of being a short fuse with frustration at skin level.   Streaming tears of exhausted deep sadness, loss, and despair.  The brain fog sitting and smothering.

I want my life back.  I want this terrible vulnerability to lessen.  I want to live without being flattened by unexpected crash landings.

I want to be able.

Other people hold my hope for a happy ending.  I breathe through moments:  I don’t have enough power to hold firmly to the hope, just enough to get beyond a long moment of despair for the future I have remaining.

lawyers, guns, and music

Friday afternoon, Big Mister arrives home from work, tired both because he worked hard all week and because he is fighting this season’s Weird I Want to Lie Down Right Now Cold.

Right about then, I got a surge of inspiration to go back to the art table, which would make it twice in one day–unheard of!   Of course, had to change clothes because I always get paint on myself.  Stopped by the laundry nook and–no. no. no!–there was water on the floor around the washer and near the hot water heater.

Well, hell, right now I’m not the most flexible tool in the crayon box, so did an unfocused Eddie Izzard dance–go to the art table there or clear up the mess and further investigate here.  Boing-boing.   Rats-buttocks, will have to stay with the watery-doom mess.

{Aggggghhh, I have a tiny window to give myself the gift of art and I have to do this?!  (Yes, self-centered, thankyouverymuch!)}

Kind of moaning to Big about the water–he had only been home 10 minutes and was sitting finally–how unfair!  He sat for a few more minutes, no doubt grumbling inside his head as would be correct, then came over to the wetness, sighed, and said he was going to need music for this.

From the CD player came Warren Zevon, a singer/songwriter (plus conductor!) with a macabre bent I became familiar with in the late 1970s, with songs like Werewolves of London and titles stranger still.  He would have understood Edward Gorey well, maybe collected his art.

Just that morning, I had paused with my coffee, wondering if I should go turn on a CD and see what would happen, if I’d have room for Baroque chorale along with the computer and coffee-sipping.  Nope.  Move along, nothing to see here.  14 months removed from my music….

After I’d done basic cleanup, Big did the heavy lifting to get the machine torqued out of its tiny corner to sit on the back porch.  We figured to let the water show itself from either the washer or water heater, so I returned to my starting place and fiddled with Art.   Big once more got to sit down.

Suddenly, I looked up at Big where, eyes round with surprise, he was grinning at me:  in time to the music, I had, unknowingly, been dancing in my chair, arms waving, maybe singing along!  Long astonished gaze.  Promptly burst into tears of relief so great that only a release like a champagne cork improperly removed would do.

Warren Zevon, “Lawyers, Guns, and Money” from his 1978 album, “Excitable Boy.”  The refrain is:

I’m an innocent bystander
Somehow I got stuck
Between a rock and a hard place
And I’m down on my luck
Oh yea, I’m down on my luck
Oh yea, I’m down on my luck
Oh baby, I’m down on my luck
I’m so far down, I don’t think I’ll ever get up
If it weren’t for bad luck
Oh if it weren’t for bad luck
I wouldn’t have no luck at all

Maybe I’ve graduated to the fancy crayon box with the built-in sharpener?!

Awakenings

Do you remember the Robert de Niro/Robin Williams movie, Awakenings?  I saw it when it came out around 1990, but I’ve never forgotten the miracle-followed-by-heartbreak bit.  Short story:   neurologist messes with brains using pharmaceuticals to reverse catatonia.   Miracle return-to-life followed by lack of miracle.

In my last post I wrote about those 5 days I had recently, 5 days where I had partially emerged from the brain fog of the last 13 months and experienced life calmly and quietly. 

I told about the beauty of calm clarity being torpedoed and the return to the mush of brain-addled anxiety.  Oddly enough, it was in slow-motion:  it took me two days to fully collapse inward after the hate-bomb landed.

One line in that post, a few words only to describe the anguish of the return to the addled state.    The anguish came from observing the descent, of clawing the walls of my dry well on the way down, begging to not go back to the bottom.

I don’t get a choice about emerging into the sunshine or plummeting to the rocky bottom.  I am able only to choose tools to ease the descent and the following days/daze of being.

The last 5 months have been brutal.  That’s the only word I can think of.  Brutal.

I’m doing OK.  Tired, quiet, but returning to calm.   Hoping for more days like those 5 days.  I liked ’em!

note to self: beware emotional landmines

For part of the last week, I experienced something new:  calm and clarity.  I could feel it start on the Friday, pushing through the fog that actually parted instead of closing over me.  By that Monday I had emerged in time to enjoy the warm spring sunshine streaming shadows in the budding yard.

By Wednesday, I knew that I had been floating along gently, same rhythm as the last many months–two to three hours of “doing” followed the rest of the day and evening by “being.”  But calm.  No brain-addled anxiety.  For 5 days.  Days of — what?  How do I describe?  Days of the opposite of the last 5 months.  Serenity.

Bang.  Hatefulness right between the eyes by a once-close family member.  I had set her aside a year-and-a-half ago following a vicious attack-by-proxy.   The way I had to set our father aside a generation before he died because he was a walking landmine.

With bomblets in his pockets, he wandered through many lives, dropping them when a new shiny caught his attention.  He was a brilliant man, but his social intelligence was petrifying to observe and to be swept up in.

He taught the next generation well, but it was his social skills he taught.  How horribly sad.    He should not have been a parent.  He made a great husband, I guess, because he married six times.

What she doesn’t see:  she has improved on his version of creating destruction–he wandered away, but she flings the bombs to protect herself against any perceived slights.    And, worse yet, she doesn’t yet know that she has taught the next generation, father’s grandson, to live in fear.  She doesn’t see her ripple effects or just doesn’t care.

She also doesn’t know that sending hurt my way won’t ease the horrible hurts he inflicted on her.  Getting whole by proxy doesn’t work.

Enough about them.   Hatefulness has been commented upon.

By Friday, I was feeling tired and knew that my 5 days of calm clarity were drawing to a close.   I hung on, a deeply hidden part of me screeching with despair:  here comes the fog and upset, but it can’t be, because I felt so good and how could it just end like that for no reason when I followed all the damn rules to be quiescent?  And why do I keep saying I’ve had 5 days of calm when it has been 7 since the start of the calm?  Oh, because on the 5th day came the hate.

I don’t have much emotional capacity still.   Emotional experiences use up my limited brain battery, leaving less ability for nicer pursuits.  An overt demonstration of familial hatefulness would have been difficult in the before-time.  Now, I pay an astonishingly steep price.

Isn’t that the way of hatefulness, though?  An immediate price is exacted from the recipient, an emotional slug to the chops.  The purveyor of hate will have a price to pay.  Later.  In living color.

Now it is up to me to make room in my life for what I want:  calm.  After living through the anguish of laser-guided hate, I will put thoughts away; I must not allow them to roam around, poking at the wound, keeping it festering.  I have done this before with family.  Now that I’m well-practiced, it will go more easily, I’m sure.

my reality: brain injury

I have been circling around this writing for at least a couple of months, which means that all day long, I try to find something else to think about.  But, at some moments, the pain and horror of my situation threaten to overcome me.   I must find a way to express the daily realities, to let them wash over and around me instead of smashing me gasping under a wave, getting my face scraped off along the sand.

toasted

toasted

In the summertime, I think, heretherebespiders wondered where my upset was about all that had happened.  I didn’t have an answer.

I see now that the answer lay in the brain fog I lived in for better than 9 months.  The fog has been lifting steadily I see, and especially since about October.

This has been and continues to be a terribly lonely journey.  I have no map whatsoever.

Who can tell me what parts of the aftermath to attribute to the near-death by C. diff or to the systemic chaos and near-shutdown caused by septic shock?  (If you’re curious about the shape of the aftermath over the last year, at the top of the page on the left is the category Illness.  Choose the subhead “somewhere near the middle.”)

The truth shall set me free.  I hope.

The truths:

I have about two to three hours of brain strength per day.  If I exceed that, I become overtired.

Take a long moment right now and imagine having three hours per day to be “productive.”  That includes making breakfast and lunch, laundry, dishes, feeding the cats, and visiting with family at home.   Now add in something enjoyable like art.  How does it all fit?  It fits into a daily dance, a constant choosing.

The hints of fatigue are not broad, so I sometimes miss them.

Or, I ignore them because I just want to be the me of the before-time, with interests and curiosities and friendships and the energy to pursue same.

Brain strength is different than physical strength; brain strength operates the physical strength.  When I start to get tired, the feeling is thus:  every last one of my three gajillion body cells starts to shrink into flatness as the energies are squeezed out from those mini power plants, and I begin to crumble in on myself.

moods in collage

moods in collage

My brain goes vacant, with spaces of nothing between thoughts or conversation, my eyes blink slowly.  I have no idea that my judgement is impaired because, well….

Driving remains difficult and only attempted when I’ve checked internally for energy and tested for slow blinks.   The thought of injuring someone is too grievous to fully contemplate.

Music is still lost to me.  How can that be?

My daily life is a state of being tired.   If I become overtired, I become mush.  I melt.  Tears and sobbing amid confused heartbreak.  Apparently, this is quite normal with a traumatic brain injury.

I live in perpetual remove from the world–if you were with me, you’d see a flat affect, but might think I was being introspective.  But if you know me, you might wonder where the sparkly amusement was, the eyes crinkling as I understand a joke about to happen.

Now you’d see me waiting for you to finish talking, then I’ll probably laugh.  As long as I’ve understood the joke.

With the overtired, the hazy remove from the world intensifies and deepens, so that I’m very far away and it is too much effort to try to understand conversation, and words on a page tumble and blend into blobs of glop (‘though words tumble even when I’m not overtired).

lost

lost

Recently, quite by accident, I heard the best description for all these moments:  the becoming over-overtired is when the battery of my brain runs down.    The tears aren’t depression in the clinical sense.  Recovery time is whatever it is.

I spent a day with a friend several weeks ago, a day I have been pining for–she is wonderful people and has always fed my soul and spirit.

Two days later, I crashed hard, face-down, scraping against the sand, gouged to the bone, as the wave dragged me around.

The crashes are horrible–I want to disappear so Big Mister doesn’t witness the melty goo.  He used to hate it when I would cry; those before-time cryings were nothing compared to how it goes now.  I see the heartbreak in his face.  I want to run and recover by myself, let him not see the crying and agonies.

When I’m over-overtired, mundane household stuff can be beyond my ability.  On a recent night I couldn’t figure my way through putting dishes into the dishwasher.  Tears.  Explanation and departure.

nightmares

nightmares

My fears:

If I slow down as far as I need to in order to remain brain-unruffled, I’m terrified that I’ll just stop.

I will be left by myself in this mess.

The mess will be permanent.

The good news:

The brain fog has been lifting.

I have continued doing art since I began again in late spring, several months out of hospital.

pages and pages

pages and pages of painting

I walk better, needing less concentration.

My verbal language has returned to about 90 percent of the before-time.  I have always said quirky stuff, so it’s less upsetting now.  Mostly, it’s less upsetting because the balance shifted out of brain-addled to more ability.

My written language has returned to about 90 percent as well.  Typing and writing are both still challenging–still I write words backwards or even words I hadn’t intended to write or type.  Forming the letters by hand sometimes comes in unfamiliar patterns.

The massive, nauseous headaches of the last several months are becoming infrequent.

I get the impression that the me emerging from this mess is the sunny, happy child I was:   sweet and loving, with less of the hard person I had become.

But if I’m tired, and struggling to understand, I may explode with the fatigue of concentrating on the moment and shout in frustration.  Probably only with Big Mister, unfortunately for him and us.

I want to live and I want to live well.  That much I have learned in these just-shy-12-months since coming home from a short hospital stay to discover my brains had been scrambled.

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