Museum of Sainthood

 

 

Guilt.  What a complex dance we are in these days!  Sometimes he leads, sometimes I am clearly in command.  Most of the time it is a back and forth mess, with the dance steps not at all defined and us both stepping on one one another’s toes.  Sometimes he steps on my face and then I am almost drowning in a sea of quicksand, unable to breathe.  Then I force myself to look upwards, and see sparkles of sunlight, dimly, far overhead.  I start swimming up and up, through dark sludge, until finally I reach the surface.  Often I am totally winded by the effort required of me.  I   hang on for a while, panting.  Then I slowly haul myself out, and for a few days, or weeks, or even months, I make sweet progress.  It’s always like being born again.  SO wonderful.  I feel almost blessedly normal for a while.  And then a blasted wave of dizziness assaults me again, for any of 8 different reasons which I try and try to figure out;  a migraine lays me low which is always accompanied by a myriad of other difficulties;  or just good old depression rears its ugly head again.  Brain injury is years of 1 step forward, 2 steps back, 3 steps forward, 2 steps back, 1 more step back, suddenly 4 steps forward, unexplained 2 steps back..  Stop to reassess if you’re making any progress at all. The sentence I just wrote….I was counting on my fingers trying to see if the math worked out at all, and finally just gave up.  I’m brain damaged.  So I can’t do math.  Get over it.

And there is so much riding on my recovery!  The happiness of my husband, my children, my friends, my mother.   I want so desperately to be able to deliver a positive report for ALL of them because I can see how much they love me. And  all my former students. and teaching colleagues…..    it seems like every conversation now somehow circles around “what an inspiration my recovery has been” and “how my positive attitude has been such an encouragement for them personally” or something like that.  I keep accidentally saying things, when we run into people, that cause them to say things like “Wow!  I hadn’t thought of it like that!  You really helped!” or “What a great perspective on that!”  I almost never let myself give into the impulse….but sometimes I’m afraid I do…of saying (in a very annoyingly self-righteous way, I’m afraid) “Well, I guess there’s no substitute for getting totally knocked flat on your back to give you perspective!”  Sadly, people don’t seem to want to hear this.  I can’t imagine why.

I feel as if they are, by virtue of what they see as the  tremendously awful thing that happened to me and my miraculous recovery, turning me into a version of a saint.  Something I clearly am not.  I  have a very naughty sense of humor.  But then again, maybe the best saints did as well.

I realize that this perception may be sadly deluded and misguided.  But I still can’t shake it.  Maybe this is a better example:  it’s if I were a yogi sitting on top of a mountain, waiting there for pilgrims to ascend so that I could dole out little bits of wisdom.

I do not have any little bits of wisdom.  Not at all.  I’m really whiney.  I don’t want to sit on a mountaintop by myself.  I want to be included in the party, and then for us all to climb the mountain together.  That sounds way more fun.  I never wanted to be left out of anything!  And, frankly, I’m really upset that mountain climbing may not be in the picture anymore.  That totally sucks.  Big time. I don’t think a saint would say that.  Maybe  the very best ones would.  But on the other hand, I AM getting pretty wicked  good with my hiking sticks, so maybe?  At last another trip to a national park somedays?  Who knows?

A Different Route For A While

I faithfully sit at the piano several times a week, reach up, turn on the metronome, and dig in.  It started out in complete frustration.  My inability to remember anything, make sense of everything, when I knew vaguely that it had all, at one time, been the source of so much joy and meaning, both for me and for everyone that came in contact with me, was just crushing.  And then, bit by bit, it started coming back.  I could see that my diligence not only made me happy, but it brought my family joy.  It seemed everyone that had ever known me before asked “how’s the practicing coming?” and just lit up when I told them how I was progressing.

 

But the last few weeks it’s been harder and harder, and today was horrible.  Seems my coordination is slowly and steadily coming back, at least keeping up with the beginning level classical pieces I’m starting to be able to play again.

The giant problem is my dyslexia.  I just can’t read music at all.  Notes seem to be playing practical tricks on me now.  It’s like my brain is an oversized junior high boy, with a not-very sophisticated sense of humor.  “Your leg is cold.”  “No, it’s not.”  “Yes, it is.  (snicker, snicker).”

And with music notes…”That’s an F.”  Next time “That’s an A.”  I can never be sure if it’s my dumb brain trying to fool me, or if it’s actually telling me the truth.

 

I don’t know if, or when, this will change.  No one knows.  I’m on my own here.  So I have to, one more time, come up with a Plan Q.  A different way of existing in the world where piano may, or may not, ever be my “thing.”  But as Scarlett O’Hara said in Gone With the Wind, that terribly flawed depiction of the strength of the human spirit, “Tomorrow is another day.”  So I won’t think about it today.

Neck Brace and A Miracle

My neck was came darned near being broken in the car wreck.  I have always struggled with neck pain:  back in high school, I was trying to show off how extremely cutesy and agile I was, and I tried to do a back flip in our gym without a pad.  I had never done one successfully before, even with a pad.  The resulting damage left me in a soft brace for six months, which my mother tried to dress up by covering with attractive fabrics to coordinate with my, of course,deeply  trendy outfits.  Embarrassing epic fail.

 

Anyway, because of that old high school stupidity I have had degenerative arthritis in my neck for years.  Then when I began playing piano for hours at a time a few years ago,  it began hurting terribly, so my doctor ordered a course of physical therapy.  During the PT,  we found out that I needed bifocals, of all things,  I was holding my head at such a weird angle trying to read the music and look at the students, back and forth, that that was triggering this latest episode.

 

So I didn’t start with the greatest neck history.

 

The impact of a heavy truck, hitting my little car, when he drove through what should have been a stop sign at over 70 miles per hour and hit the side of my car, was….very harmful.  Let’s just say he made a very, very bad decision.  But back to my neck.  Never strong at the best of times, it was slammed back over my headrest so that most of my brain damage was to the back of my brain. My neck condition, was for months, critical.  There was virtually no chance that, if I ever got the brace off, I could avoid an extremely invasive neck “fusion” surgery.  I only vaguely understand this, but as I do comprehend it I would have lost a couple of inches of my neck, and much of the functions the neck performs beyond simply holding up your head and being a conduit for food.  Turning your head, looking around, looking up and down…not so much, apparently.

 

And one of my vestibular problems, BPPV, was so drastic that I was simply throwing up anytime they would change my position.  Move me. Try to sit me up.  Turn me over.  Roll me over.  Instant spew.  Again, thank God for the coma because I don’t remember any of this, but my family and the nurses certainly do.  To all of you, I’m so sorry.

 

Then right when I began awakening from the coma, I was moved to On With Life.  Enter Amy, the vestibular specialist.  She watched my eyes, saw me doing all this spewing business and ventured a preliminary diagnosis of BPPV.  But she couldn’t be sure, and she couldn’t treat it.  The diagnosis AND the treatment both required some pretty fast movements involving my neck, which were clearly impossible with the neck brace on.

 

The neck brace came off just before I was released from On With Life in early January.  Until that time, I had been taking motion sickness pills to dampen my vestibular symptoms and make them less noticeable.  The week it came off, I was scheduled for a diagnosis and first treatment.  They put these cool huge goggles on me, brought a trash can over, you know, just in case.  Then you do a whole complicated series of movements, rolls, sitting up, laying down, and all the time people are watching your eyes on a screen to see the fine movements that the nystagmus causes.  I asked Amy one time what exactly they were watching for, and she asked “Do you remember Cookie Monster’s eyes when he would see a cookie?”  “Well, it’s a lot like that.”  Interesting.

 

At first without the neck brace there was a LOT of neck pain.  Because of all the trauma to my neck, and because it had been immobilized for months, my neck was simply unable to support my head.  Its ligaments were basically noodles.    By evening it would be aching really, really badly.  I slept in my old neck brace for months.

 

All the time I had been in the brace, I had had to sleep flat on my back.  My normal sleeping position was on my stomach.  After the brace came off, I couldn’t lift my head high enough to get it on a normal pillow.  We found the coolest travel pillow, very bendy, with the center cut out of it.  I slept on that, flat on my back, for another year.  Now I sleep on a low pillow on my side, but I still spend at least half the night on my back.

People were praying for my neck to heal:  Thousands of people, through my Caring Bridge, were praying,  and for this surgery to not be necessary.

Three months after the accident, I went for my first set of neck X-rays.  It was guardedly optimistic.  Much better than expected, certainly, but far too soon to tell if the weight of my skull would still drive my head down into my neck, making the surgery necessary.  Come back on the one year anniversary.

 

We came back at one year.  More X-Rays.  The doctor came into the room.  Very, very good.  Almost less than one millimeter of my head settling down into my neck during the first year, which was the danger point before my ligaments were strong yet.  Still too early to be absolutely sure, but if the two year anniversary was just as good, he said I would never need to come back again and NOT NEED THE SURGERY.

 

Two year appointment.  No fear at all in my heart. In the  last appointment I had asked him for neck strengthening isometric exercises he could show me, and I had been doing them regularly with no pain.  I was turning my head so much farther, looking around me so much more normally.  I felt total peace whatever he said.  I knew God had it.

 

After I had the X-rays taken downstairs, we went up and waited a little for him to read them.  Finally he called me back into his off.  He started out, as my husband said he always did, with a history lesson.  I could wait.  I knew it was going to be all right.  Then he got to the point.  He said “There’s virtually no more settling of your head into your neck.”  “You never have to come back and see me.”  And then he kept looking at them, and looking at me.  “It’s odd.  The only explanation for why you avoided injuring your neck more, and didn’t need the surgery, was your coma.  If it had been even a week shorter, I think we would be looking at a very different set of circumstances with your neck.”

 

Sometimes God says “Yes.”   Sometimes He says “No.”  Sometimes He says “Wait.”

 

My husband says that he still wishes when all those panicked prayers were going up to Him….because every single day and hour that you don’t wake up increases the likelihood THAT YOU NEVER WILL!  He’s the Creator of the Universe.  Would just a text message have been too much?  Just an “I got this one” or something?  And I gotta say, that’s a question we’ll ask when we get there.  But not right away.  We’ll be too busy thanking and praising Him for stuff.   Amen.

Conversations

 

 

 

Talking.  Like Anne of Green Gables, I have been told too many times, too roughly, that I talk too much.  And I know I do.  I am a verbal processor to the extreme.  I hear, or think, or read the barest germ of a thought, and immediately have to talk it through WITH SOMEONE ELSE to start bringing it to life.  My husband is the total opposite.  He can dream something up, and plan every nuanced detail before he springs it on the world in all its glorious fruition.  Not me.

I have to exhaustively find person after person to talk phase one, phase two, phase three, phase forty, phase one hundred,, of a plan that might not ever happen.  My husband used to marvel at how I could expose myself like this.  But I simply had no choice:  it was the only way I could ever achieve anything.

My mind was always bubbling, always excited, always full of ideas.  And between children, church, and school, I had the perfect places to release all that energy.  It was a lovely laboratory of ideas and excitement building on ideas and excitement.  But the last few years it had reached a crisis point of stress, and I knew something had to give.  So I was enrolling in a Masters of Music Education to get a job at a university as a mentor to student teachers, which increasingly had become my passion.

And then…the accident.

Now I have been totally off Zoloft, my anti depressant, for several months.  I have been off my anti anxiety medication for a long time because that drug, along with a couple of my other medications, set off a terrible drug interaction which caused such severe dizziness it left me almost unable to walk or move.  So..

I’m feeling excitement again, my brain is sparking all the time, I’m excited about ideas.  Because I have dyslexia now, I can’t read books, but I can listen to podcasts and listen to audio books, and I can think about them.  And I love it.  And, along with that, I feel sadness.  And it’s my sadness.  And I love that too . I don’t want to lose that again.

But I’m deeply, terribly, afraid I might have to.  Right now I don’t have a neurologist, but my doctor has requested an appointment with one that I liked the sound of.  I really loved the previous one, but after only two visits, we received a letter saying he was joining a non-neurological practice and, in more polite terms, his patients would just have to fend for themselves.  So since them I haven’t had a neurologist.

I have almost nightly meltdowns now.  This is due to a lot of things, but a whole huge chunk of it is my desperate need to talk with people who I know, and who LIKE me!  I so miss that!  Writing is just not the same.  It’s not collaborative, not a team effort.  And talking is so hard now.  I get so confused, story lines are difficult, time lines are impossible, my speech is still slurred when I get excited.  I dread talking on the phone still, , and I  almost hate meeting new people and having to talk to them.

When my husband is home, he’s always working on something out in the yard where I can’t follow, or it involves equipment which makes sudden very loud noises.  Anyway, he carries such a huge load of guilt and worry about me all the time. He really only seems to truly come alive when he’s working out in the yard or remodeling our house.  He hates to sit and talk.  I used to  dislike it, too.  But that was before the accident. when I could walk and talk at the same time.

Friends have to come to me now.  We live in a pretty isolated area.  Everyone who used to come to our house would always exclaim “What lovely privacy!”  And that’s exactly how it is.  Very private.  How lovely…..except now, when I really kind of need more neighbors.

Maybe the doctor, on hearing this, will put me back on the Zoloft,  Maybe that’s for the best.  If I have no one to run all these exciting ideas by verbally, maybe it’s best if I just never think them.  Maybe.  Because this really is a kind of torture.  I keep telling myself to put on my big girl panties.  Stop being a whiner.  No one is mean to me at all.  So what if no one wants to hear my exciting ideas about _________ just this minute?  Is that really the end of the world?  And then I scream (silently, of course) yeah, to me, it kind of is.  It kind of is.

 

 

Ooof.  I wrote this whole thing last night in a total orgy of self pity, and then I went upstairs trying to flee from the whole world downstairs.  I put on the television to public television and there was a documentary about the history of some genres of folk music.  The particular segment that I settled on was set in West Virginia, and was narrated by a couple of men whose fathers had spent their entire adult lives working down in the coal mines.  I watched those terrible scenes before me, and immediately felt bathed in shame.

I thought I would just erase this whole thing today. But then I decided not.  I am not who I used to be.  I am not  nearly as clever or able to process things mentally well at all.  I get confused frequently, and I get angry.  That slows my thinking down to a virtual crawl.  This  frustrates me EXTREMELY.  I am  in some ways, vastly more selfish now.  But in other ways, I know and recognize suffering as I never did before.  I know I am  in no  way experiencing the limits of human suffering, or even anything close,  but at least now I can maybe catch a dim glimpse of desperation?  Maybe?    I have no idea.  I just know I couldn’t erase what I wrote last night, but I had to write an addendum.  Please forgive me for whining.

 

Emotionless

I have always felt strangely drawn to children and people with autism.   Somehow I just enjoyed being around them, talking to them.    Through the years,  I read everything  I could get my hands on about this peculiar and often devastating condition.  In 1991, I taught my first special education music class, and I was hooked  Almost every year I seemed to have at least one or more special ed students in choir.   At my last school for seven years I had singers in all my  choirs from our school’s special ed class. It was thrilling  to see how each of them grew as people and musicians during their years in choir, and how the mainstream students would respond to them.

Don’t get me wrong:  I was by no means an expert.  I was simply very interested and really wanted to  help them grow as singers and people.   This led me to  try different strategies with my students, with varying degrees of success.  There was no  guaranteed fix, because they were, and still are, all very, very unique human beings.

I  quickly figured out, largely by trial and error, that emotional subtlety  just didn’t seem to work with students  on the autism spectrum.  That certainly suited  me:   my natural method of communication many people would criticize as “too direct.”  I maintain that being “direct” always is more efficient and more effective than passive aggressive. Maybe my constant smiling is not only a reflection of my positivity, it is also a way of issuing a preemptive apology. Of apologizing in advance for anything upsetting that I might say in the very near future…

As the years passed, working with these students and incorporating them into the life of the choir  became more and more rewarding for absolutely everyone involved.  Especially me.  It wasn’t anything extraordinary, it was just how the world should be.

And then, as all the stories in this blog say…a truck hit me.  I awoke to a world of total fear.  Faces didn’t make any sense, voices and words didn’t mean anything, I couldn’t sort out any kind of sensory input.  Total confusion.

Over the days and weeks that followed, I began to find patterns.     Little by little, I began to recognize my family members again, then to recognize my therapists.  I began to relearn words, and then language.  I learned to swallow and eat again.

After I came home  I continued to have  problems  interpreting people’s facial expressions, especially  those I hadn’t known well before the accident.  I had difficulty “getting” jokes, reading social cues, and just handling everyday social interactions.  I relied on my husband to tell me if someone was being funny, was angry at me, or just what  the heck was going on.

In retrospect I suspect that my brain was doing the best it could with incomplete and confusing input.  Interacting with  people I had known well before, my brain was already familiar with how they would react to certain  situations, so it could fill in the blanks much more successfully. In totally new “after accident”  scenarios, my broken brain had no baseline of data to operate from.  The information coming in often was skewed and incomplete or I was simply misinterpreting some things.  This sometimes led to very, very painful misunderstandings of something that I had said, or done.   These situations rarely came up with people I had known before.  Something must be different now.

Almost 3 years after the accident, there is still a lot of that left.  I make stupid mistakes occasionally now that I would never have made before.  I was pretty emotionally sensitive before, but I misread situations often.

Another thing:  when I first came home, because of my overwhelming all-the-time fear, I was faking every “normal” emotion at a desperate pace.  I didn’t want to let down my family, who I felt had already been through so much all because of me.  I faked happy, nostalgic, hungry, expectant, cheerful, excited.  All I was feeling, underneath my drugged-up calm, was the constant low-grade buzz of anxiety.  Sometimes breaking out into fits of  outright panic  and tears.

Until that summer we went to Shell Lake.  Out on the kayak, I looked around me, and realized I was happy.  Truly happy.  I hadn’t felt anything but fear for so long.  I didn’t recognize it at first….it lasted for quite a while.  That is still a truly beautiful memory.

I’m not autistic.  Autistic people are born that way.  I had an accident that involved brain damage, and because of my years working with autistic students, I am thankfully able to recognize many of these traits in myself.  I regularly check several wonderful autism blogs and websites, and am able to recognize symptoms in myself such as  perseveration which I now wrestle with quite a bit.  These sites fortunately lead me to lots of positive, proactive solutions for my newfound struggles.  I don’t think I would have been able to so quickly recognize these problems in myself, and known where to go to find solutions, if not for the years of struggles that these kids and their parents went through.  Because of that pain, so many of them chose to reach out to help others with autism.  And, I guess, me.

I am really confused how to feel about this. I guess, in the end, it doesn’t really matter how I feel.  It just is the way it is.  I just have to accept what is and start looking for ways to move forward from here. Those are brave words to say, but sometimes difficult words to act upon.

 

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.

 

 

 

 

 

The Definition of Laughter

I’ve always loved to laugh.  I realize everyone’s probably nodding along in agreement:  that’s certainly not a controversial statement.   But I seem to really need it–deep down need it–maybe more than most people.  My default facial expression has always been a smile.  My life’s ambition is to have one of those faces you sometimes see on elderly people which are very deeply creased with laugh lines.

I was listening to a podcast recently, and the speaker, a comedian,  was saying that one day he had been researching the definition of laughter.  It said “laughter is hope made tangible.”  I have no idea where that definition came from.  I’m using it without giving the proper credit, but I felt it was too wonderful not to share.  So I am.

Laughter has gotten me, and my entire family, through SO MANY extremely dark periods. Take my mother’s heart surgery a few years ago. During the time I was staying with her in the hospital, it didn’t look at all hopeful.  I got so desperate for anything cheerful or funny that that at night, when she was sleeping, I would stretch out in the ICU waiting room or the couch in her hospital room and stream the latest Jim Gaffigan comedy special on my laptop. Sometimes that was the only thing between me and a nervous breakdown.

Following my accident, while I was at On With Life, my regimen was very demanding  both physically and mentally.  In the evenings a member of my family would help me down the hall to my room where there were side-by-side leather recliners.  I became very attached to them–so much so so that I decided that they belonged to us, and we should take them home when I was discharged.  This may not entirely have been due to my broken brain….

My speech aphasia was still severe, so my family relied on “a series of yes” or “no” question.  My world was very tiny, which was probably a good thing.  The list of my possible needs was finite.  “Hungry?  Thirsty?  Bathroom?  Tired?  Cold?  Chapstick? “As you’ll probably guess from this post, I seem to be obsessed with chapstick.

They would ask me which of the chairs I wanted, and if I wanted the foot rest up.  We would call “Shpring it,” and then my current family-member-in-waiting would pull the lever to raise my feet.  The origins of that phrase, once again, must have been another example of dark humor.   I have forgotten now, but I may have mispronounced “spring.” Our oldest daughter has the gift of creating fun out of  the most mundane tasks.  After the accident, in those months, I certainly cherished that.

Then they would ask if I wanted “Burt’s Bees,” which was what I called all chapstick for several months, drape me with a blanket, and we would stream episodes of The Office on the TV. My daughters called this “my evening relax and smile therapy.”

My addiction to this show led to a little embarrassment.  That Christmas when I made my first overnight home visit, I was still very prone to speaking in memorized quotes and poems and song lyrics. I was not yet very skilled at composing original sentences, which is a really complex process for the brain.  This apparently  led to my making a “that’s what she said” joke in front of my  very conservative mother, who was up for the day from Missouri. It was 24 hours of various sorts of ribald comments,  all of which I found vastly amusing.  My filter, never very thick at the best of times,was totally MIA.  Thank goodness I was never one for cursing or automatic bad language, or I don’t know what would have happened!

During my time on the feeding tube, I lost a lot a weight.  I have gained some back since, but I’m pretty careful about monitoring my weight gain. For the time being vigorous exercise is very much out of the question.  I eat little with my low level of activity.  Besides,  I get pretty defensive about my sweet tooth–when you can’t digest rich food, hate the taste of any drink other than water, can only tolerate tiny portions at a time, especially when in public…I mean, cut me some slack!  I honestly feel as if eating sweets is my only real consolation.  I know, I know, that’s a pretty unhealthy relationship with food.  But it’s at least my own sickness, and I don’t feel I can control much these day.

Since the accident my family have relied a lot on very dark humor. So when people (a few of whom haven’t seen me since the accident,)  say “you look great!”, my response sometimes is “Thank you.I call it the coma diet.  But I can’t recommend it;  it almost killed me.”  Hopefully, after a startled second, this gets a huge laugh.  It never fails to crack me up.

One night I was talking on the phone to my lifelong friend. It was during the time our youngest son was busy applying to colleges, and struggling to get the very best financial aid package.  I told her that I had given him my permission to fully exploit the story of how how, during my entire hospitalization, he had continued to go to school as normal.  This had resulted in him finally buckling down and starting to really take school more seriously, as was evidenced in the sudden rise in his cumulative GPA. I think I was also explaining to her that I felt my family had gone through so much they should get something out of it.

Sally didn’t miss a beat.  She said, “there’s nothing a good mother won’t do for her son.  Nothing.”

It took my poor fractured brain several seconds to get it, and then I laughed until I almost wet my pants.  That’s one big reason for our lifelong friendship–we can share jokes.  What a rare gift.  When you find that someone, all I can tell you is, keep the attachment alive!

That definition of laughter; I love it so much.  “Hope made tangible.”  Hope heals. I’m a living example of that. Beauty and laughter have always been life values for me, but I used to be able to leave to go out to get them.  Not anymore.  So I have to be proactive to fill my house, and my life, with them all the more .   Bring on the laughter!