Feats of Derring-Do…or Derring Don’t

All through the physical therapy, I was so thrilled to be standing, then out of a wheelchair and walking again, it was unbelievable.  Throughout outpatient therapy I would get on a treadmill and walk as quickly as I could for 10, and then 15 minutes.  But I always had to have a belt on and a therapist standing beside me holding on, or I might fall down.  Everything I was doing involved a gait belt and careful supervision.  I had two remaining vestibular problems (I didn’t know what those were at first…let’s just say they have to do with the inner ear and they can mess you up pretty badly!) Daily exercises keeps one mostly at bay, but there is some permanent loss with the other one.The vestibular damage causes dizziness and vertigo, sometimes worse.  Very like being in a mild, constant personal earthquake, with occasional violent upsets that send my stomach into a frenzy and make me feel as if I am falling.  It can be sort of unsettling.

 

Couple that with the fact that most of my brain damage was to the back of my brain, the cerebellum, ,which controls coordination and balance, and I’m pretty much a mess when I walk.  I can walk short distances by myself, but I’m very conscious that I have my feet wide apart so that I don’t fall down, and I walk with an oddly hurried gait once I get started. Very much of an out-of-control toddler sort of an affair.

I’ve been trying to think how to describe how this feels inside my head to people for about a year.  Yesterday I got the most wonderful insight.  See if you can picture this:  It’s almost as if my entire head and torso were a peach, and my legs were toothpicks stuck inside the peach.  My brain, which is supposed to be running this entire shebang, is like an offsite remote control run by another person.  It doesn’t respond instantly, and every time the person running it has to get comfortable again with exactly how the controller works.

For instance–every morning I slide out of bed slowly.  I get my weight situated evenly on both my legs, test if they’ll hold, and then stabilize myself against the side of the bed for a couple of seconds.  This is when I start “turning on my brain,”  Once it’s firing on all cylinders, I tell my legs to “walk”, and after a second or two delay, they usually obey me.  All this breaks down under extremely frigid temperatures.  When my legs get too cold, they just refuse to obey me.  My brain says “walk”, but they won’t.  My brain start raising its internal voice, but they won’t listen,  I sometimes get so desperate that I start yelling at them out loud, but they still won’t move.  I have to physically pick them up and lift them in the car, or wherever we are to get them out of the way.  It’s like they don’t even belong to me.

Back to the fascinating peach on toothpicks picture:  this is what walking feels like all the time.  Very out of balance, very out of control.  Always like I’m about to fall down.  I have to constantly make myself lower my arms because they have a tendency to always be out in front of me, out of my constant fear of falling.   I need to remind myself all the time to relax, because I am usually somewhat  stiff and knotted from fear;  I can’t see spatially very well, which causes confusion about exactly where curbs, or stairs, or things in front of me are located; quite an adventure!!!

Added to that , the delay in brain communication adds a delicious dollop to the entire thing.  For instance, I really haven’t yet figured out the left-right thing which adds some extra confusion to me trying to direct my movements.  The order of operations goes something like this:

Me, feeling thirsty, decide I want a drink.  I make a decision to go into the kitchen.  The operation begins.

  1.  Stand up.  Get my legs straight, get my weight balanced, commence forward locomotion. Try to do a somewhat graceful stagger  into the kitchen.  Make it successfully.  Stop by sink, holding onto the counter.

2.  Get glass from counter.  Tell self to turn head and body towards refrigerator.  Start walking.  Stop when I reach refrigerator drink dispenser.  Push glass toward first ice dispenser, then water dispenser.  I squint to see more clearly if the water is actually going into the glass, and then how full it is getting.  I’m much improved at this.

3.  Full enough.  Tell self to lift glass to lips.  Concentrate on swallowing.  This still requires a lot of work.  I need to focus or or disaster will quickly follow.  Success!  Tell self to walk back to counter and set water glass down, and then you can go back to the couch.  Sometimes I have to hold onto the counter a few seconds before I start walking again.  If there’s anything in my path, this is a big issue.   I can’t easily bend over because of bouts of vertigo.  Back to the couch, my thirst satisfied.  I turn around, put my rear end toward the couch seat, and let go a little.  Always relieved when the seat catches me.  I’m terrified in case a chair isn’t behind me, or it breaks, or something dire happens.  I don’t know what I would do.  Fortunately it never has. All this exactly like someone running the entire operation via a remote control.  You have to figure out EVERY SINGLE OPERATION separately!  That’s exactly how it is with me now.  I don’t do anything automatically.  At least now I can just go and get a drink and sort of play it by ear on the way…a few months ago I still had to plan the whole operation before I even started.  Something as simple as getting a drink.  Unbelievable.  I still can’t believe it myself.  I feel as if I’m being overdramatic just writing this!!

I was always quick and impulsive.  Sometimes I would act first, think later.  Too often this got me in trouble.  It is impossible now.  Nothing is at all quick, thus I cannot be impulsive.  I have impulses all the time now, but I simply can’t act on them.  So I wait.  I wait.  And I wait some more.  I know everyone says they aren’t good at waiting, but I think everyone who knows me would agree that I was always much worse than most.  God is definitely using this to teach me a very valuable lesson…and I still mostly hate it.  But I love the image I came up with yesterday, of a peach perched on two toothpicks, being run by a remote control.  I think that’s a perfect picture.  And I know God is perfect, darn it all. And I really am learning, God.  I guess.  But I’m still not happy about it.

toothpicks

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To Teach…or Not to Teach

 

 

 

 

I was born to teach.  More precisely, I was born bossy, and I learned to channel that productively to become a pretty good teacher. Given my insatiable drive to help people, plus that music seemed to be my native language, it followed that teaching music and working in church music was the ultimate life goal for me.  All my life I’ve done both of these things, in varying combinations.  It was the very air I breathed.  It was never a job.  I would gladly have done it for free, but unfortunately you have to have money to live in this world, and that I was able to help support our family by doing this was just pure joy to me.  Sure, I got tired.  But what was a healthy body for if not for working hard?  I didn’t realize it at the time, but the harder I worked, the more proud I was of the picture of ME:  the hard-working, talented, nice, little do-gooder always rushing around helping people and making everything better.  Oh, and I had a very cute. sporty, second hand little car with a stick shift that I was doing all this in.  But I was very conscious that you shouldn’t be proud, and that it was all coming from God’s grace, and I was always very insecure and vulnerable, and willing to demonstrate that at a moment’s notice.  Or less.

And then, in Sept. 2014, a truck hit me.  It changed everything.  Two and a half years after the accident, I took stock.  I was home.  I was beginning to be able to read 15 to 20 minutes a day, to listen to music occasionally (maybe 1x a week), to walk around the house by myself.  I still couldn’t  even walk outside by myself or make many decisions on my own.  I definitely would never be able to work full-time again…I was praying that God would prepare me to someday be of use to someone, in some capacity, again.  Maybe leading a children’s choir in a church, or something like that?

I still wasn’t driving myself, and I was staring into the very bleak prospect that, quite possibly, I would never be able to drive again.  So any possibility of employment would have the added complication of transportation.  We don’t live in the city or the suburbs, so driving has always been somewhat of a necessity.

I had to start all over with piano, and after almost 2 years of almost daily practice, I was still struggling to learn the most elementary level of classical songs.  So possibly I would never be an accompanist again, because my vision didn’t seem to getting any better.  Reading music is essential for an accompanist, unfortunately.

It was as if I was walking down a long hallway of closed doors, and I was trying them one by one, only to find them all locked.

Or it was like a nightmare of being back to middle school again.  I was extremely unpopular (which had actually started in elementary school, and lasted clear through high school, but who’s counting?).  Several classes I had no friends in that particular class.  I would walk into the room, and every time I would try to sit down, a student would shake their head “no” and tell me that seat was saved, or move their books onto that seat.  I would end up standing until the teacher came in and saw me, and made the students move their books off the “saved” seat.

This latest feeling was reminiscent of one of those awful memories, of trying and trying and trying to find a way to make it better, to get out, to find a seat, and running again and again into a “no”, or a wall, or a locked door.

I went into another depression.  My counselor says that a good thing about brain injury is that it forces you to face your “stuff” and work through  it more quickly than healthy people, who can mostly just keep going until things get really unhealthy.  Alcoholism, divorce, etc.  God spared me from those by breaking my body and brain.  Thank you God.  I mostly mean that now.  I really do.  Sometimes more than others.

Anyway, I feel as if the main way I can help now is just tell my story.  I might never be a “teacher” again in the traditional sense; I might never be an accompanist again.  I will never sing again so that anyone but God will want to hear; but I have learned to type and write again, and I can tell my story.  And I do have a story now to tell.  So I’m going to do it.  Again, thanks for listening.