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!

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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.

dudette, stop crying; there’s good news!

Since my brain is bein’ what it’s being and I get confused about a lot of stuff, it was excellent news (to me) to discover that I have been mistaken for several months about how long this recovery has been going on.

Somehow I added a month to the time since discharge, so we’re here at the end of the 7th month, not the 8th, which makes me feel better.  I had figured that since I (mistakenly) thought I was at the end of the 8th month, I was in trouble with my brain recovery.  Hell, not yet!  Still a work in progress!   <:-D  (Please do not ask me how I have come to that conclusion.  My story.  Stickin’ to it.)

That is all.

(Whew.)

absence

Ah, there I am.  I’ve been walking around in a verbal fog for the last month.  My writing voice has been stilled.  My poor old beaten up brain can only do one big thing at a time, apparently.  I will assume that once my verbal re-wiring is complete (enough), my writing will return.

I miss my community here, but there is so very little to do about that.  More waiting.  6-1/2 months post hospital.  I could not imagine that life would be this strange and that it would continue un-know-ably.  That is to say, the re-wiring of so many facets of me continues to take me by surprise, except for expecting the surprises.

The good news:  I’m improving.  I’ve been working with a physical therapist who understands brain trauma and that even in minimal brain trauma, the most mundane and “I learned that when I learned to walk as a toddler” tasks can be affected.  Hence the difficulty and resulting exhaustion of taking a walk on a familiar cobbled beach.

Now I understand why JustI of JustUsSociety posted that video back in April about the brain researcher, Jill Bolte-Taylor, who watched herself suffer a catastrophic stroke.  At the time, I didn’t get the significance.   So many commenters here seemed to understand that I had suffered brain trauma; I depended on your feedback because I didn’t know, being stashed behind that benign fog, but I listened.

I’m having trouble forming memories and when I try to search for a previous moment, the effort is often too great, too tiring.  Sometimes I confuse memory with dreaming.  It does make me realize how inconsequential most memories are as single moments, but how as a whole those memories give breadth to a life.

I have since discovered a US Veterans Administration PTSD website that discusses minimum brain trauma (they call it minimum traumatic brain injury or mTBI) and its logical relationship to PTSD.  I have been fascinated, and relieved, by the neuropsychiatry discussed (this link takes a bit to load because it is a Flash file).  The PTSD symptoms are still very much with me and force me to keep a low profile.  But I’m stubborn so I keep trying, keep pushing my boundaries.

I’m also in the mosaics studio most days for a couple of hours.  Creativity is still blunted, but I am able to better “see” the patterns and line expressions in the works I copy.  Very good news indeed.

I do have moments of rage against the medical machine, sending me home without a hint of what the next year could hold.  How could you leave me twisting in the wind?   You left my family twisting in the wind, too.  Ripple effect.

This writing has been very difficult–I am having trouble recognizing grammatical structure and misspelling so often that the delete key has a divot in it now, plus I’m typing words backwards and even typing words I don’t intend to type. (!!)  (Hope this essay is readable because I can’t edit it for sh*t!)  The effort required is reminiscent of the attempts to make conversation or the effort required to compose a post in those early days.

I will close with pics of my garden so we all can relax now.

globe thistles covered in bees!

Oriental lilies

crocosmia and honeysuckle backed by lily

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