Through the Prism of Music

 

It all began with music.Language was next, and because I grew up in America English was what we spoke.  I always  have had a knack for languages, but music definitely came first.

Because of this I never considered a life outside of music.  I  started formal piano lessons at age 4 because I was playing all of my older brother’s piano pieces note for note by ear.  I majored in piano in college, and for several years was a staff accompanist at a respected university.  It was as natural as breathing or talking, and I think anyone who knows me will agree that talking has always come very easily to me.  It all  was just so darned simple …I practiced and played for hours every day, but it was always pure joy and release from tension.  I seemed to think in musical terms…I was constantly imagining musical phrases in my fingers.  Add to this the fact that I had near-perfect pitch, and my life was filled with music.  Fortunately I married a musician too, and our children  were also musical, so life was rich and filled with flowers, art, books, laughter, and–most of all–music.

Then came the accident.  Or as I prefer to say,  “a truck hit me.”  Everything stopped.  The music stopped.  My life came within moments of stopping.  And it has been excruciatingly s–l–o–w in starting up again.  Some days I am more successful than others at coming to grips with this new reality.

All my life has been some wonderful combination of teaching vocal music, leading worship, teaching piano, or simply participating in music.  At church, school or home,  I sang and was at the piano most of  the time.  After the accident all that came to a screeching halt.  The part of my brain that processes the information  coming in from my eyes and ears was badly damaged, so I could see and I could hear, but I couldn’t make much sense out of the signals I was receiving.

Besides this, I had major physical injuries to deal with as well as my damaged brain.  The things that directly affected my singing were:  my diaphragm was torn and had to be repaired surgically, several ribs were broken which still causes me pain when I try to draw deep breaths,    I had a tracheostomy in my neck for weeks.  There didn’t seem to be much hope that I would ever sing again.

At first, when we went to church, I couldn’t even match pitch, or sing more than two or three notes without having to take a breath. For several months, just getting there, and being there, was adventure enough for me.

I couldn’t make sense of the faces, the music, I was worried about things like where we would sit and having to get to the bathroom.  My main emotion was paralyzing fear, but I was determined to get better.  That’s pretty strong motivation for getting out and about again, and I knew I needed God, and church, more than ever before.  So I made myself keep going.

After several months of listening I started trying to figure out the time signatures of the songs.  I would try tapping along, and periodically ask a member of my family what I was thinking it was, and ask if that was correct.  Sometimes it was, sometimes it wasn’t.  Gradually I improved.  Then I got somewhat more adventurous.  I decided I would try to match a pitch.

I knew this would  be quite an important endeavor for me. I remembered from my years of teaching that listening was vital to matching pitch, so I thought starting with humming would be best.  One morning they were singing a piece I particularly loved, I  so I finally got my courage up.  I tried to breathe as deeply as I could, I hummed along for a few notes, but couldn’t hear myself at all so I decided to vocalize along with just a few notes.

Total train wreck.  Not even close.  My only consolation was that absolutely no one noticed, because my voice was so weak that it was practically inaudible.  I was so shattered that I stood, blinking back tears, for the rest of the singing time.

That was another rough stretch.  It was difficult to collect  the broken pieces of my identity  one more time and create  another action plan.  Hadn’t I done enough starting over?

I did a lot of thinking and self-reflection about my life, and realized that this had always been a core piece of my identity, something that I never wanted to lose. The idea of “music” is so much deeper to my identity than any nonsense about having a beautiful singing voice, or playing piano well.  It is the lens through which I see the world  It very much brings everything into focus for me.  I knew that if I was going to find any joy in the remaining years of my life, it was absolutely essential for me to get music back.  I just had to find a way to not let memories of what HAD been destroy my joy in what WOULD be.  I resolutely pointed my face towards the future, and desperately tried not to glance back over my shoulder.

As a teacher I had always greatly enjoyed working with adolescent voices (there’s some speculation that may be because of my somewhat immature sense of humor) but that’s beside the point.  Anyway, now I had to bring all those lesson  home to myself.  I was among the worst singers I had ever worked with, but  I was also my favorite kind of student.  A pretty quick study, very motivated, and there’s a big difference between learning for the first time, and remembering skills and theory that you’ve taught others all your life.  All I had to do was think.  Note names and their places on the staff, note durations, music theory, vocal pedagogy….all of that was in there.  I just had to unlock it,

It all starts with breath, both in voice and in piano.  Deep, rhythmic, relaxed breathing.  How many times had I said that to my students?  Breathe in tempo BEFORE you begin the music and then join in.  It’s very much like children in a game of jump rope on the playground;  if another child wants to jump into the game  already in motion, you teach them to watch for a while, count along, then breathe in time and “join in with the rope.”  Don’t over think it, just relax, breathe in tempo, and jump in.

I decided it would be most time-effective to combine practicing singing with practicing piano.  So I formulated a plan for daily practice of both.

That Christmas my family bought me a stationary recumbent bike to strengthen my legs.  When I finished my piano practice, I would climb on my stationery bike and start pedaling and singing.  This, I reasoned, was not only strengthening my singing voice and breath support, but my memory.  During that  Christmas season I would sing every Christmas carol I knew, and all the verses. Especially Good King Wenceslaus.  My oldest daughter and I, when she was in high school, challenged each other by memorizing ALL the verses to that carol.   Every Christmas since we (somewhat teasingly) test each other on the words.  That was one thing I was simply desperate to get back.

I had taught general music for years, so I knew lots of folk songs.  Those all came in very handy during our child raising years as lullabies, and they came back into use now.  Again, all the verses.  I thought of it as “double” or “triple teaming” my therapies.

My singing voice now no one would describe as “beautiful.”  Not anyone who didn’t know about the accident.  But at least I can contribute to singing in church now, and I can pretty much make it through a complete phrase.  That was a necessity for my inner musician. Now that’s all I ask.  But I’m still working.  Still pedaling away madly on my bike doing vocal warmups.

Now for piano.  This was definitely the most painful blow.  I was never an operatic vocal soloist, but I was a very serious pianist.  The accident threatened to steal all that me.  I forgot everything.  Except that, once upon a time, I had been very good.  Now  I couldn’t see the notes…they didn’t stay still on the page.   I couldn’t remember what they meant.  My cerebellum was damaged, which greatly affects one’s coordination, so my fingers wouldn’t work right, and my hands wouldn’t work at all together.

My music therapist at OWL was wonderful.  My family had told her how vital music had always been to me, so they all thought music would be a great way to reach me.  So they started taking me in to sit in front of the piano, and putting my hands on the keyboard.  I was wearing a heavy neck brace, so I couldn’t keep my head upright for very long. Multiple times a day my husband went through this pain.  Then, one day, a miracle.  My hands played a major chord.  Then, a few seconds later, another one.  Then slowly, back to the first one.  Back and forth this went on, for quite a while.  Then my hands fell to my lap, and my head fell forward.  After the first chord, he had begun videoing, and when it was finished, he sent it to our children,  They happened to be all together, on a rare afternoon off-duty, off for a walk.  They watched in disbelief, and then hugged each other.  They told me afterward that even though I still hadn’t spoken, or recognized anyone, they knew in that moment it would be all right.  That I would be back.  That I was still in there.

Fast forward several months:  when I first came home, I was able to pick out single melodies again by ear, and could vaguely remember how to read music, but the notes still wouldn’t hold still at all, and I couldn’t tell the notes apart on the page.  Fortunately my whole family reads music, so someone was always available to help me out.  My cerebellum injury left me with very little sense of tempo, so I’m reliant upon a metronome.  I had to start over with the simplest exercises, one hand at a time, then work up to scales.  At first I tired extremely quickly, so I could only practice a few minutes a day.

When, eventually, it became clear to me that I would never hold a full-time job again, or possibly ever drive myself again, I sank into a deep, dark depression and thought “why practice?  I’m never going to use it again!”  Then, one day while (hopelessly) praying about it and the thought stole into my mind “you’re never going to be ready for ANYTHING if you don’t get your butt over onto the piano bench and start practicing!”  After all, it took me years of practicing the first time when it was all so easy.   Now it  seemed it was going to be much more complex.  Better not waste another minute.  It seems as if I can’t even succeed at giving up.  Believe me, I’ve given it quite a few tries.

As of writing this, I’m mid way through the Grade 4 Alfred books.  I’m tempted always to compare it to how I was before, but I  simply cannot do this.  It’s just much more difficult for me this time around.  I laugh that I’m not only like most “ordinary” piano students, I’m like the most challenged ones now.  The ones that I always watched in wonder.  The ones that I sometimes thought “How I wish I could just climb into their heads to see what it’s like!”  Well, how I got my wish.  Except it’s more than a visit.  Now I live here.

 

 

 

 

 

Dog to the Rescue!

 

Just about two weeks ago, we finally got a letter that I have been approved to receive a support mobility dog.  It has been a very, very long process of prayer, hope, dreams, depression, and longing.

First I had to get a glimmer of a dream of a possible future for me.  It seems impossible sometimes to avoid looking around at all I’ve lost, to see any kind of a future. When I let myself remember how very full my life was before, and how barren it seems now,  it’s like looking at a wall.  A dead end.  I try to make myself picture a window that I can see through to look at what my life will become now.  Perhaps one day I will be able to picture a door that I can walk through, into a new, lovely life.    I won’t lie to you, it’s a tough  process, and sometimes I’ve definitely been more successful than others.  But God has been down here with me. and I’ve learned a lot about trusting and listening to Him.  He’s very good at that…He’s had lots of practice.

I first had the vision maybe two years ago, not long after I came home from the facility.  If I was going to struggle with walking independently for quite some time, and possibly forever, why not apply for one of these mobility dogs that I was reading about?

So that launched the first wave of effort.  My oldest daughter, who had been home with us during the 9 months after  my accident, took on the project.  She did lots of computer research and made dozens of calls.  It seemed most places we found wouldn’t allow their dogs to go out of state, only trained dogs for children and veterans, or were prohibitively expensive.  She finally settled on a man here, in our city, who trained dogs  He said he had several breeders he regularly used, and he would be willing to go with us to pick out the puppy.  We would do the basic obedience training, and he would do the specialized part of the training.

I did further research on mobility dogs.  Unlike other support dogs, they have to be fully mature…approximate two years old.  Just the frame that they wear around their neck is pretty heavy, and in case the person stumbles and puts their full weight on the dog, their bone structure has to be mature enough to handle it.

And there is a very high risk that a puppy won’t turn out to have the correct temperament.  After 18 months of training and love and waiting, we would definitely have a pet.  But maybe not a mobility dog.  Pretty scary stuff.  But I said “Ok”, because this seemed the only option available.  And a puppy is, after all, very very lovable!

And then came months of waiting, without a call back.  When we eventually managed to make contact, it was only to find that this man had tragically died of an premature heart attack a few months before.

Of course this was a much, much more extreme tragedy for the man’s family than for us!  Even so, it seemed like another setback on my journey to find a dog.

Back to the facility in St. Louis that my daughter had initially called, who had refused to give her an idea of any waiting period until we paid the application fee.  As I pointed out, it had already been more than a year since we had initially started the process.  The usual wait time we were finding for a dog was 2 to 3 years, so if we had applied at the time …..

My husband quickly agreed.  He called them.  The initial contact was indeed most unhelpful, which must have been what turned my daughter off.  They were mostly concerned with telling you what the dogs could NOT do.  They were NOT seeing eye dogs, they were NOT trained for PTSD, yadda yadda yadda.  He persevered, thank goodness.  She agreed to send him an application.  Game on.

My lifelong best friend lives just a few miles away from this particular place, and she is the one who hand-delivered the initial application packet, and the follow-up packet.  She and her husband also paid the application fee for us.  They, along with several other friends, started doing some heavy duty praying.

Support Dogs Inc., where my dog is coming from, is, as I said previously, in the St. Louis area.  I can’t say enough about the great work this organization does!  We visited there a few weeks ago, and it just made my heart leap up to see those dogs, so proud and tall, all there for their “specialized” training.  They are all born there, then at 8 weeks they go, either first to a family or to prison to live with a prisoner (they will eventually all do both) for their socialization and basic obedience training.  Then when they are 18 months old, they come back for the specialized training.  We saw 2 litters of puppies, and about a dozen of the older returning dogs.  My dog is more than likely right now in a prison or a home.

Can you tell I am excited? This is me trying to hold it down. This application process has already been very extensive, and more than a year. They say the wait will be less than two more years, most probably around a year. I am content to wait now that I know for sure that somewhere out there there’s a dog for me.

Hello out there, my doggy pal! I’m praying for you, and your trainers.

reflection of what used to be

This is hard to write.  I didn’t even realize it was a problem.

It has been nearly 2 1/2 years since the accident, and I thought my attitude was mostly pretty positive.  Actually pretty miraculous, considering everything, would be the consensus of most people who know me.

My husband gave me a lovely, lovely Valentine card.  It was so beautiful it made my eyes tear up as I read it…he left it on the table for me when I came down for breakfast, because it was a work day for him.  I was alone when I opened it.  It said something about still being a beautiful woman.  I mean physically beautiful.  That shocked me to my core.  I used to be pretty, or at least I thought so.  I always had plenty of dates in high school and college, so that didn’t seem to be a problem, but every since the accident I look so much older, and initially I was so thin, and haggard and stooped, that I hated to see pictures of myself.  And several people, several times, would ask me if my husband was my son, or if my friends–who were always in my age group–were my daughters.  I was very well aware of how much the accident had aged me, and just didn’t enjoy looking at myself in mirrors anymore.

So I didn’t.  Without realizing it, for a couple of years I had only looked at bits and pieces of myself in mirrors to check for gunk in my eyes, if my hair needed combing, or if my outfit looked all right.  I had ceased to care much about my appearance. I was telling myself “It doesn’t matter!  It only matters what’s inside you!”  I had no concept of myself as even attractive anymore.

Then the card.  I sat staring at it, thinking, for a long time.  Then I slowly carried it into the downstairs bathroom, where I go to comb my hair, and set the card down on the counter beside the sink.  I lifted my eyes up to look at my face in the mirror.  Couldn’t do it.  No matter how hard I tried–and I tried over and over for 20  minutes–I couldn’t look at my entire face.  Could not make myself.  I could only force myself to glance at bits of my face for a second before my gaze would slip away, no matter how I tried.  I started to sob ,hard.  I hadn’t realized this was even a problem, let alone such a desperate one.

It was totally shocking.  Just another piece of crap I would have to fight through.  I get so tired of fighting all the time.  Of being positive.  Of smiling.  But I can’t give up, because I just don’t know how.  One time, years ago, within a few months I had been let go from one job that I really loved for reasons that I’m still confused about, and then I got a temporary teaching job.  When I interviewed for the permanent teaching job, I didn’t get it.  Under, shall we say, pretty dirty circumstances,  Those two experiences made me decide to be a more tough-skinned, less vulnerable, not smiling at everyone I meet, sort of person for the rest of my life!  I managed to keep that resolution for….I’d say, about 1/2 hour?  It’s not like I’m naturally good, I just don’t know how to be negative.  I always choose the positive.

My hair is silver.  It’s been naturally silver for several years now.  Before the accident, my face was pretty tan and my movements were quick and youthful, so people hardly ever mistook my age, but now…I look worried all the time, I’m stopped over, I have to be helped everywhere, I’m a little thinner than I used to be, I have several scars that I didn’t used to have, and my eyes must look older. I move much more slowly, awkwardly, cautiously.  No wonder they mistake me for the elderly mother.

I don’t feel I look beautiful anymore.  I don’t feel even remotely pretty anymore.  So how can I enjoy looking at myself in a mirror?  How do I fix this? It’s no use that my friends and husband rush in and say “you look younger!” when, almost immediately, a clerk, or another stranger, will mistake me for the elderly mother.  So I know better.  I know they’re just lying to save my feelings, because they love me.  Or maybe my husband still sees me through the eyes of love.  I don’t know.  I just know my eternal fountain of creativity is baffled this time.  I always thought that my husband and I would grow old together.  Not that I would suddenly leapfrog ahead of him.  That people would mistake me for my own children’s grandmother.  I KNOW it’s just my stupid pride, that I could have a terrible facial disfigurement or something like that.  But it’s still a problem.  Just because it could be worse doesn’t change the fact that it’s still a problem, and you still have to deal with it.  It just helps you keep it in the proper perspective, I guess.

 

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

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.

Humans vs. Monsters

jack-o-lantern

All those years of carving jack-o-lanterns with our children.  Memories that were carved, like the pumpkin faces, in my broken brain.

 

When I first began coming out of the coma, nothing made any sense AT ALL to me.  Everything was really, really scary.  I was extremely tired, I hurt all over, I was terrified, I was freezing cold, and it was as if I was being assaulted by sensations that didn’t make any sense.  I’m beginning to be convinced that this was a large part of my “agitated” phase of coma recovery…being overwhelmed by sensory input that you can’t sort out and make sense of.   You hurt and you don’t understand why.  You can’t understand what anyone is saying, or why they are trying to trying to get you to do things.

I especially remember that faces didn’t make any sense to me.  The part of my brain that processes the information that my eyes send it was damaged, which caused everyone around me to resemble monsters, unfortunately.  Only my immediate family, whose faces and voices and movements I remembered, did I want around me.  Everyone else was terrifying.  Fortunately, On With Life, the brain rehab facility that I was in, employs a “team” philosophy for nurses and CNAs and therapists, so that the patient quickly becomes familiar with a small group of people.  This was a real life-saver for me, and I’m sure for many other people.  I never could recognize faces the entire time I was there, but I could learn movements, and voices, and footsteps.  I still struggle with vision a lot, and can’t really make sense of faces very well yet, but it’s definitely better. I had to learn to write, and to remember how to spell again, and could read for only minutes at a time with very large font.  I still struggle with reading.  My new glasses have corrective prisms in them, and without them I immediately start seeing double.  I describe them as “girdles for my eyes”, and I need to take them off sometimes to let my eyes slip out of focus and relax (and see double!).   My niece, who has dyslexia, has suggested a lot of helpful aids for me.  I wasn’t born with dyslexia, but I must have “created dyslexia” of a sort now. A couple of months ago, I was watching our neighbor’s preschool age son practicing making numbers on a sheet of paper, and I exclaimed “Aren’t 5’s and 3s the worst!”  He nodded “yes” very solemnly.  I still struggle with what direction those numbers go, and it seems every zip code is just LOADED with LOTS!!!

Back to faces…what started my break-through was remembering carving jack-0-lanterns with our kids.  Two eyes on top, nose in the middle, mouth on the bottom.  Everything, by and large, symmetrical.  THAT was what faces were supposed to look like!  So I started (hopefully inconspicuously) trying to look at people’s faces carefully. They were pretty scary at first, I won’t lie!

And I would compare them to jack-o-lanterns.  Two eyes: check.  Nose in the middle:  check.  Mouth on the bottom:  check.  But for a long time (and I am still dealing with some of this), another complication was that my field of “focused” vision was very, very small.  I could really only see half of a person’s face at one time.  I was constantly having to decide “top half, or bottom half” when I was watching someone  talking to me.  It must have been pretty disconcerting.

Recovering from a brain injury is an exciting affair if you can keep your focus off self-pity and towards “hmmm.  This is an interesting challenge.  What can I find in my bag of tricks that I can apply to this situation.”  Don’t get me wrong.  I’m not eternally, obnoxiously cheerful.  I have a very well-stocked whine cellar.  I can moan with the best of them.  I just always realize, after a good session of that, that I’m no further forward than I was before, and it’s time to get to work again.  A certain amount of self-pity is unavoidable, but you don’t have to stay there.  I still have to visit there, and sometimes more frequently than others, but I never want to live there.

Toothbrushing 101

toothbrush

 

Toothbrushing is such a boring affair.  Something that one does, automatically, without even thinking about it.  Put some paste on the brush, scrub your teeth for a while, spit, rinse and spit again, and finite.  Until one day you wake up from a coma with a major brain injury and have to learn how to do the whole thing again.  Plus you’re not even cleared to swallow liquids yet, so you have to be very careful not to let any of the “liquid” get accidentally down your throat.  Where to begin…

 

First you have to be helped into the bathroom.  The CNA hands you a little cup and you have to figure out how to a. turn the faucet on and, b. get the cup under the stream.  When you have all that coordinated enough to get a little into the cup, you have to figure out how to turn the faucet off.  That completed, you have to strategically organize the order of operations, taking the lid off the toothpaste, putting the toothbrush against the tube of toothpaste while you squeeze, getting a little on the TOP of the toothbrush (not the side or the bottom), and juggling the whole thing to put the cap back on the toothpaste.  I usually bailed at this point until I was finished with the whole operation.

Now to the mouth.  Slowly, slowly, keeping careful aim.  Remember to keep your mouth open…too many times I was concentrating so hard on hitting my mouth that I hit…with my lips closed.  Sigh.  Bingo!  Fully loaded toothbrush inside my open mouth.  Now where to start brushing?  Top?  Bottom?  Side?  So many choices.  I need to get started because too often I just stalled out here.  Now I’m getting somewhere.  So far so good.  Now spit.

Ohhh nooo.  I forgot to lean over the sink, and I’m dribbling toothpaste slobber all over my chin.  Close my mouth a little, and bend slightly at the torso and try again.  Better.  Continue brushing.  I’m wearing out, but I’m not nearly finished.  Still lots of jobs to go before this task is complete.  Midway I usually have to go through the whole rigmarole of rinsing my brush out again, because I have too much foam.  Finally I believe I have done a good enough job.  What to do next?  I try to collect my thoughts.  Oh, yes.  Rinse out my brush.  I do that, then try to figure out whether to tap the brush on the side of the sink to get rid of excess water or not:  I decide to go for it, but get it upside down, then sideways, then hit my hand on the sink trying to tap my toothbrush.  Ouch!  Darn it!!  Ah well.  Good enough.  Now to get a little water in the cup again (a fairly monumental task with my skewed eyesight), and put some in my mouth, swish it around, and spit.  Darn.  I forgot to bend again.  It just runs down my chin.  I try to laugh at myself, because, after all, it IS pretty funny.  Do it again. Try to pitch the cup at the trash.  Miss by a mile.  Just look over and shrug because I’m too exhausted to go over and get it. Look in the mirror.  Smile weakly at the drool-stained, disheveled woman staring back at me from the mirror, because  I’m  moving forward every day, and that’s definitely better than backwards.