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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full-tilt

the awakening

I  am coming awake from the illness-induced numb-distance from the world, here at the middle of the 6th month of my recovery.  And hoo-boy, what I have wakened to!  It’s like coming home to find out your teenager has had a kegger in your absence and the house has had a bomblet dropped in it.  Complete disarray everywhere on top of the usual mundane furnishings.  And you keep finding snoring, drooling kids in the corners!

That’s me now.  In the holy-crap, where am I and what am I gonna do now?   Truly it was easier and gentler to be numb.  But OK, this is what I’ve got today.

experiencing life in my new skin

Last Friday, without thinking the possibilities through, a friend came over who got me out of the house.  She drove us around to yard sales and we even had lunch out.  In theory that was fine, not a lot of activity.   But I found out she is an angry, shouting driver, unaware of her own overwhelmedness, so busts forward along her path, yelling and swearing and pounding the steering wheel.  I even had to ask her to park the car if she was going to text.  Eeeeeeeek!

Lunch out seemed like it would be a chance to mellow out from the ride–the restaurant was quiet.  But the canned music from overhead made my insides shriek with pain, made my head feel as if it were being flattened from above.

After lunch I was all in, so much so that I couldn’t even find the clarity to ask to go home.  Floated through, leaning against the headrest, until I got to the safety.  Then, rested the remainder of the day, feeling like a deer in headlights.

the beach walk

On Saturday morning, I consented to go for a walk along a pebbly beach with Big.  No big deal, I’ve been there many times.  Except, this time, I had to engage fully in controlling my legs and feet, and the effort quickly became a battle.  What?!  Surprise!  Walking isn’t predictably consistent either.

Up we went to the bluff.  I rested on a bench, insides trembling, and panting slightly because I couldn’t get my anxious-breath.  Big went off to get the car and he directed me the other way over an easy, short bluff-top dirt trail to a parking lot where he could pick me up.

As I sat on that bench, wondering what to do, wondering if I could just stay there forever, an elderly couple came along the trail.  I’m good at hiding my anguish I figured, so I said hello in some easy way.  The woman looked carefully at me, you know, just a bit too long between strangers, and asked if I was OK.  Oh yes, says I, just resting.  Inside my head I was screaming No, I’m not OK!  Please let me walk with you!   (Next time I will ask!)

They went along and I sat there, bereft in a small way, easing my breathing, knowing it was best to just get walking.  I did a mundane thing–picked up someone’s trash and dropped it in the receptacle, then turned and started walking.  We’re not talking a mile or even a half-mile, but it seemed so far to meet Big.  I don’t give up easily, but the thought had stayed that I could just not go.

the irony in the overwhelmed

I took 10 steps or less and suddenly a fast-moving freight train was roaring by.  Even I could get the irony of being so terribly overwhelmed by little things and here I am faced with a freight racing by only 50 feet from me.  It’s funny, really, in a dark humor way.

May I say that I rose to the occasion?  I stuck my fingers in my ears, was not singing la-la-la-la-I-can’t-hear-you, and turned my back to reduce the sound.  I understood that there was no getting away from that train except going back down to the beach.   That accepted, I turned around and faced the train and something new happened!

I became acutely aware of the discrete sounds of each type of car.  The empty flat-beds gave me time to breathe, the fluid tankers whooshed the air around them in a roar, the grain tankers rumbled.  I heard the end of the train coming and waited–just to be sure there wasn’t another train parked on a siding waiting to come the other way toward me!

The path indeed parallels the tracks, is the dirt filling of the ocean-and-tracks sandwich.   I made it, but with anguish and upset.  Part of the upset was coming up against the More

neuronal challenge: too much information

Bean/Nadbugs at catself asked me to post snippets of the brain challenges I’ve had since my bout with septic shock (definition here) in February.  She’s right that just trying to think of something to relate is a challenge.  So, snippets it shall be.

On a recent Saturday I got to play with Big Mister.  We drove the 15-in-town-miles to the VA Community Living Center (Mom is a World War II veteran!) where Mom now lives so we could visit a bit.   Did some erranding first.  Lots of Saturday shopping traffic and backed-up traffic lights.  Not easy for me even in the before-time.

We visited with Mom for a short time, Big inside with her and me outside her window–my immune system is not up for a concentration of germs.  This was only the second time I had seen Mom since early February.  Since I still have an active infection and am leery of antibiotics, I am at risk for another bout of deadly sepsis.  If I take the antibiotics, I will likely be attacked by C. diff again.  Either one could kill me; how to choose, how to choose?!

This is one strange ride, I’m telling you!

Then heading home through that same Saturday traffic.  Within about 5 minutes, the anxiety began, but I kept it from Big.  Anxiety has been part of package since I got home.  Finally, I asked him to stop the car so I could move to the back seat (much less head-on activity from that vantage!).

Too late.  Too much information had hit me.  It seemed as if my eyes were darting in my head, trying to see each stimulus, each car, the sounds of engines and car radios, the colors of the traffic lights, and do something with it.

But no, my eyes weren’t doing that.  There was that pinging in my brain–like 20 railroad engines driving on their own tracks, but each as loud as the other so my brain had no choice but to attend to all.

I wonder if that’s like taking a ride on one of those round-and-round vomit comets that earth-bound astronauts-in-training use to test their mettle, only it’s inside my head.  Nobody else can see what is happening to me.

The anxiety overtook me:  I wanted to cry or scream bloody murder, but couldn’t.   A controlled descent, fortunately, to overwhelmed.  Breathing.  Holding on to me, desperate to be in the quiet of home, breathing.  Finally, home and mellowed out.

I still look like me, but these things are very much a part of my daily life, and show up at any time.

Dear Hospital Discharge Doc,

I appreciate that your knowledge of, and ability to treat successfully, both sepsis and C. diff helped to keep me on this side of the living.  Truly, I do.  Without your abilities and those of the emergency department medics, I’d be deader than dead.

You asked me if I’d like to go home or stay another day.   Of course I wanted to go home!

The discharge papers included:

  • the diagnoses:  sepsis and C. diff.
  • extensive printed info about C. diff from two different sources:  it’ll kill you blah-di-blah; recurrences; future proclivity.
  • notation to follow up with my own doctor within one week.

Here’s what I didn’t get:

  • Information about what the septic shock did to me, a systemic malfunction that progressed far enough for my kidneys to shut down.
  • Hints about the recovery from sepsis, that there was even a recovery to be endured.

The acupuncturist I saw about 6 weeks following discharge told me that after his own bout with sepsis, it took him a full year to feel strong again.  A full year!?   At the time, I was sure it couldn’t take that long for me.  Um, because I’m special?  I sure didn’t want that to be true for me.  I had other plans.   That appointment was 8 weeks ago.

When I expressed my frustration to the acupuncturist that you hadn’t given me a single hint about More

recuperation: bubble theory

Today I am here. Today I am limited. Today, I am not the same as I was on February 12, 2012, the day before my brain and body exploded with heat and pain, and my body’s processes dropped toward zero.

For the last month-plus, I have observed myself coming out of the fog of death-defying illness. The first two months are only a fuzzy blur where I went through the motions of taking care of myself, taking meds on a regimented schedule, staying at home, using every bit of energy to just be, so there were no observations and very little awareness beyond my skin.

When I first came home from the hospital, with its tubes and hard-hitting, life-saving drugs, I did attempt to fall into my daily routine, subconsciously allowing muscle memory to guide me.

In the before-time, part of my morning habit was turning on the CD player and sitting in the living room, drinking coffee, checking email and reading the funnies online, plus checking the (awful) news, both domestic and foreign sources.

In the time after, it became thus:

There was no planning, just doing: arise after dreamless sleep, go to the CD player to have music for my morning as was habit for years, but quickly turn it off. Then, shower, and dress, boil water for herbal tea, fix the same bland breakfast, and read in the bedroom for hours.

The music of my mornings before my descent toward zero was usually Baroque chorale music, or one of my favorite happy guys, Henry Purcell.  In those new mornings, as soon as I turned the music on, I had to turn it off because it immediately used up all my brain cells.  The music evoked a constant sonar pinging against every More

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