My Unwelcome Neighbor

 

I have a really annoying neighbor who moved in uninvited three years ago, and just won’t leave.  I’ll call him Mr. V-Stib.  He has a cousin who visits sometimes, and then it gets MUCH worse.  They really partay when they’re together.

The cousin is BPPV,  the most common vestibular problem.  I do exercises every day to mostly keep this guy at bay,  Whenever he comes to visit, which is about twice a year, really bad things happen.  Every movement of my head  results in violent nausea.  But–on the other hand, when he does show his ugly face, we can call my doctor and tell her that he’s here again, and get an order to go back to On With Life and get treated for he/it. Then  I just need 6 or 8 bi-weekly sessions of physical therapy to recoup the ground I lost.

That all sounds simple.  The reality is that, one morning I wake up, start to get out of bed, and immediately the world erupts into violence.  I might throw up, and I might not.  But I definitely feel like it.  Only my husband can take me to get treatment because I am in no shape to travel with anyone else and he has to get a day off.  At the risk of TMI, I always have to take a vomit bowl in the car.  Just saying’.

So usually I’m like this for several days while all these arrangements are going on, and we are getting all the delights of insurance worked out.

The “treatment” involves me laying down, usually with a trash can by the end of the bed (just in case.)  Then they have me roll rapidly from side to side, and several times with my head hanging off the edge,  and  then they watch my eyes spin.  Somehow from all this they can tell which ear canal those darned calcium crystals have migrated to this time.  It’s definitely not fun.  But I’m very very very grateful they can do such an impossible thing.

That episode earlier this summer turned out, despite days of pain-in-the-neckness, to be a blessing in disguise because it resulted in me getting a doctor’s order to go back for some much-needed physical therapy.  This really gave me a good start on my summer. And at the end of all this, I don’t have to deal with the effects of this one every day.  And that is sweet.

My permanent neighbor  is bilateral hypo function.  This one is pretty rare.  They say I have some permanent loss here, but not severe.  This one is low-grade constant all the time, but occasionally I go through periods of weeks where it is much, much, more severe. This  one is so complicated–I guess those of you that are THAT interested can look it up–but among its many personal delights for me are what I call my “personal earthquakes,”, which I think is pretty explanatory.  Or how I constantly feel like I’m walking through a funhouse, and when my hypo function is really acting up everything is in huge motion.  That’s fun. I read one description of it that described it as “always on a balance beam.”  That’s probably the best thing I’ve heard yet.

Another exciting extra I got  with my purchase of hypofuction:  frequently, I feel an invisible  push when I’m walking.  Given that my balance is pretty precarious at the best of times, this feels just plain mean.  So  I’m away from home, feeling sunny and confident, and trying to stride briskly out in public with my hiking stick, and suddenly I feel a hard shove that causes me to stumble.  And the shover just won’t stop.  He–somehow it is always a “he”  (sorry guys, but I guess I picture him as a big bully).

This is not at all funny, no matter how hard I try.  When I  suddenly am afraid it could happen at any time, it’s really hard to be so darn confident.  To not hunch over.  To not frown. And to put my shoulders back.  To take big steps.  To not suddenly become a sniveling heap of whining humanity.

But yesterday I had a revelation.  Earlier this summer, when I had my other reoccurrence, my therapist asked me to step up on a foam pad.  I couldn’t, even with her holding on.   I felt too dizzy still.  Then she went and got a weighted vest, put it on me very snugly, and held on to me lightly  and asked me to do it again.It was much easier that time.  I did it several times, and asked her what the heck was going on?

She explained.  My v-stib occurrence had been so harsh this time  that I had been having mini panic attacks, imagining that they had come back.  My imagined symptoms were maybe worse than my real ones were now.   My paralyzing fear was stopping me from doing things much more profoundly than the v-stibs themselves ever would be able to.

That was another life-changer that my illness has to teach me.  There just seems no end to the lessons that this pile of crap has for me.

So, if God won’t release me from me from Mr. Stupid V-Stib, if he’s here for the duration of my life–as it seems he is–I’m apparently going to have to make peace with him.  He won’t move, and I can’t move.  I’ve tried fighting him, and I’ve lost.  He’s still here.  So I’m going to have to make peace with him.  This is my fifth day of thinking of him as a fairly unpleasant neighbor.  People have them.  We don’t live in a neighborhood, but we hear stories.  And we’ve worked with some unpleasant people before, so it’s not like we’re beginners at this sort of thing.   Apparently God thinks I have something I need to learn from Mr. V-Stib.

I had been trying to avoid doing anything  that would bring on the symptom. The repercussions in my head and my stomach were so unpleasant.  But for the last few day days, I’ve been trying not so much to purposefully “lean into it,”, but to just behave normally.  To get on with my life.   And I’m finding, that it’s really not that bad, when you take the fear out of the equation.  Whatever I’m doing, whether it’s washing the dishes, walking to the refrigerator, or putting something away, if I feel something different, I just pause, think about it, and go on with what I was doing.  And already I find that I’m getting a little more used to it, I think.  As my favorite neurologist said, “the brain is a wonderful thing.  There seems no end to what it can get used to, adapt to, or how much it can improve from an injury.”  There seems to be a little of all three of those finally going on here.

OK, those words sound good.  They sound brave.  Here goes.  I almost convinced myself. Plus that last couple of days, he’s been bothering me much less than when I started this post.  That definitely helps my attitude about all this.

But not his cousin, Mr. BPPV.  Anytime he shows up, I’m definitely showing HIM the door!

 

 

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Diving Into a Different Pool of Meta

As I look back over all the essays I’ve written, both before and after the accident, slowly but surely I begin to see vague glimpses to my all-consuming question, “God, what on earth am I good for now?”  I mean, every time I try to talk about this to my family, my friends, my counselor, or basically anyone else they just quickly jump in and say “You’re LOTS of good!  Look at all the things you can do!”  Or there’s the tack of “It’s not what you DO that matters, it’s how you make people FEEL.”  Well, all too often, despite my best intentions, I make the people around me feel like total crap.  How do I justify that?”

I decided this spring that if I couldn’t do much stuff, at least I could make the people that come to me feel good.  Most of the time that works.  Much of the time.  And then……..I suddenly get into a terrible terrible terrible funk and just want to tear everything and everyone down for no reason.  And now I am verbal and clever enough again to get it done with extreme efficiency.

I am NOT a passive person.  I’ve made great strides at waiting,  not pushing, in these past 3 years.  Oh yes.    I’ll freely admit that I was pretty sucky at waiting before.  But I really need, for my family’s sake and myself, to find something productive and creative to do with my time.

I keep trying different things and striking out out at all of them so far except for one:  telling my story.  And wow, do I have a tale to tell now! I suppose it’s just like a good fairy tale, or an adventure story, where something interesting has to happen to the hero/heroine.  Some great cataclysm.  Maybe that’s why He allowed me to live, so that I could testify.  Writing is something I have always loved.  In college I was so freaky passionate about my writing and English classes that I ended up with a minor in English.

But that’s in the past, and a little bit of remembering goes a long way.  No, the very sticky bit is to not get “stuck.”  Stuck in only being able to see things through one lens, from one angle.  That’s why cars have a huge windshield but also are equipped with small side and rear view mirrors.  You’re supposed to spend most of your time looking where you’re going, but sometimes glance back where you’ve been and see what’s coming up from behind.  I just made that up, so possibly it’s the stupidest thing ever.

It’s just how I have to live now, though.  I can’t go back to how  I was.  That boat has sailed.  I have to imagine a new way of being now.

If piano or singing or teaching or choral conducting are not possible right at this time, writing seems to be something that I can do, and from my home.  Goodness knows that I have enough peace and quiet and time to get it done now!  There’s the niggling problem of no income, but I just need to finish my book right now and who knows?

My oldest daughter and my husband bought me this computer which was identical to the one I used to have at school, so I could understand how to use it.  Things weren’t going at all smoothly with our home laptop….so I was really grateful for this computer!  Maybe you can teach an old dog new tricks, but very possibly not a brain-damaged dog.  At least not for a good long while.

All my family spent so much time with me, in evenings when they were already tired, editing my feeble beginnings, because I simply couldn’t see much of anything.  I would misspell, use run-on sentences which  I probably never would have before, and I just couldn’t see punctuation  marks at all.  It’s much better now but still a problem.  If you read my blog from the beginning, you’ll see that my entries are getting longer and more complex, although my family kept me from publicly humiliating myself.  They edited out most of the  big glaring mistakes. They are all great writers and I owe them all a huge debt of gratitude.

At first I had to learn the basics of typing and computer keyboarding again, and try to remember how the darned thing even worked. I told my speech therapist that I was working on a book, and I was struggling with typing.  She showed me a wonderful voice recognition software program that we could buy very cheaply, and it all seemed great!  Luckily my husband had me try out the free one that came with my computer first….I sat down to start in great excitement.  I hadn’t reckoned with my newfound autism.  I could not manage somehow to get my thoughts out of my brain and into my mouth in any sort of a fluent fashion.  The minute I would start sitting in front of the microphone I would just freeze up.    So I realized there was no other solution to getting it done than relearning how to type.

This is so unbelievably meta—writing a blog post about me learning to write again, and how this may be my new path towards life.  It’s just like some of my staff developments in the past, where we went “meta” into what learning really is.  But I secretly used to sort of dig that stuff, even though I would always have to make the obligatory “this is such a drag!” groans so the other music staff wouldn’t think I was too much of a geek. Feels really good to be thinking that deeply into things again.  I don’t consider myself “creative” in the sense of coming up with original ideas:  my head has just never been filled with plots, ideas, characters, or situations.  But IDEAS!  Come to me with the germ of an idea, and I can, as my husband has often regretted, build it in a matter of hours into a full-blown skyscraper of a concept, which may or may not ever happen.

I know you’re already poking holes in this idea.  “But whatever happened to your supposed need to bounce ideas off other people?  Aren’t you forgetting about that?”  No, I am not.  That is a problem.  A kind of huge one, right now.  But I can always change:  people can.  And as the song goes, “there will be an answer….let it be.” Come on, let’s all sing it.  I can hear you out there humming right now.  Louder.  Take a bigger breath….you’re dealing with a choir teacher here.

 

 

 

 

 

 

 

 

 

 

The Chair

The Chair From The Depths Of Hades.

 

It is called the Rotational Chair Test.  Here is the online definition:

The chair test measures dizziness while the subject is being turned slowly in a motorized chair 

                        and….  

The rotary chair test is used to help determine if your symptoms are due to a disorder of your inner ear or a disorder of the brain. Eye movements are recorded with small electrodes similar to those used during the ENG test. Not all individuals need a rotary chair test to assist with diagnosis and many health care facilities do not have access to a computerized rotary chair. The rotary chair test allows measurement of responses to movements of the head that are closer to speeds encountered in daily activities. During this test, the patient sits in a computerized chair that moves. The rotary chair test is very useful in determining if an individual has a problem with both sides of the vestibular system (bilateral vestibular loss.

I feel my  overwrought hysteria about this test perhaps needs a bit more explanation.  Allow me…

First:  Pre-accident my vision was so  exceedingly poor that I was totally dependent on my glasses.  Almost any physical punishment was preferable to my glasses being broken.  I couldn’t even find my glasses without them on my face.I was very near the “legally blind” parameters.  Because of the goggles they have you wear for the test, you can’t wear glasses.  I am lost without my glasses. Totally vulnerable and afraid to move.  Childishly near tears immediately.    My husband had to help me to step up into the “dark room”, which was a very menacing chair placed on a platform (I know my husband will say it was “just a chair” but I’m sticking with my story) inside a totally closed capsule.  God help anyone with the slightest hint of claustrophobia, because there were no warnings of that at anytime before the testing.

I now see double without my glasses because of the brain trauma.  Did I mention that the test was SANS GLASSES?  Oh yeah, I think I did.

Second:  The accident left me with PTSD.  I was on anti-anxiety drugs, anti-depression medication, sleeping medications.  For this test to be successful, they had stipulated that I was to be drug free for 48 hours before the test.  So, basically, I hadn’t slept AT ALL for 2 nights except for brief naps from total exhaustion.  And just wait until you hear what comes next.

Third:  The test was scheduled for Tuesday.  That Saturday morning, our much- beloved family dog, a yellow labrador retriever named Remo, who was over 12 years old, finally was unable to get up off his fleece in the kitchen.  My husband and our son carried him into the yard and helped him stand so he could go to the bathroom, and then carried him back up on our deck and laid him on a blanket.  The entire rest of the weekend he kept slipping in and out of consciousness.  It was unspeakably difficult to watch.  Monday morning my husband called the vet and they made an appointment for a couple of hours later.  Remo had been our family dog with all that entails. The laughter, faithfulness, joy, stories, parties, camping trips, kayaking, singing along with my voice lessons The morning he was being put to sleep was the first morning I was scheduled to be off of all my medications.  We had waited months for this appointment, my husband had scheduled the entire day off already.  We needed some answers.  We were going.  Come hell or high water, and this was pretty darned close.

Back to the capsule.  I hear the woman’s voice coming through a speaker somewhere in the darkness. I try to concentrate on the directions, but I am so extremely afraid I am having real trouble keeping it together.  I am determined not to break down after we’ve come through all this.  I’m finally here!  I finally am just praying one word with tears running down my face.  Please.  Please.  Please.

Fourth:  Immediately after the accident I lost all concept of right or left.  The first part of the test was showing a tiny red laser light on the wall, which of course I couldn’t see at all, and I was supposed to tell if it was moving right or left.  The woman was given NO IDEA at all of what my medical history had been, she was just to administer the test.  My husband was out there trying to explain, and I was inside having a total meltdown.  Finally he opened the capsule, put my anxiety stone in my right hand, closed my fist over it, and had me repeat after him “right.  Right.  Rock right.”  Finally I had it.  He closed the door again.  Back to the dreadful, terrible, awful, stifling darkness.

And somehow we held it together.  I wasn’t alone in that dreadful place.  Someone was there with me.  Jesus was with me in my childish fear and isolation.

We had been waiting in this particular doctor’s office for several hours.  First one waiting room, then an interview with an assistant, then another waiting room, and so on and so on.  Now it was hours later, both of us were starving and I was scared out of my wits and my husband was worried to death for me, and the doctor had just rushed into the r00m, asked if we had had this particular test yet.  When we replied “No,” he had sent us down to this lab.  The sheet from the morning had said “don’t eat the morning of the test.”  Luckily I had eaten a granola bar because now it was after 2:00 with no end in sight.

 

There were several tests.  The chair kept stopping, turning, the voice kept issuing directions that I would desperately try to follow.  My husband said it was maybe 30 minutes.  It seemed to me like an eternity of pain and chaos.  Tears kept streaming down my cheeks.  The lady kept asking if I needed to stop, and sometimes I would for a bit.  Sometimes my husband would open the door for a while and reach in and hold my hand for a while.  They were both so unbelievably kind and gentle.  The lady was simply appalled that they had sent me down without giving her any warning at all about my situation.  I was just so grateful for the knowledge that both of them were keeping watch out there.

By the end I was just a broken, sobbing wreck.  Praying for Jesus to please hold me.  Which He clearly was.  The lady’s sweet voice would ask me a question, I would breathe and ask Jesus to help me, and He would whisper peace to me.  We got through it.

Then back to the doctor’s office to await the results of the test.  Which was definitely the worst thing ever.  Ever.  Ever.  We had been sustaining ourselves throughout this entire ordeal with the hope of finally getting some answers if only I could just hold on and make it through the test.  And finally I had DONE IT!!!!  Triumph!!!

Back to that  last blasted office.  He rushed in again followed by an assistant or two,  And delivered this verdict.  That he wasn’t sure why On With Life had recommended he see me.  That he could only find a small amount of residual vestibule damage.  What he had found (not him, of course.  One of his assistants.) was significant cerebellum damage which accounted for my balance issues. He seemed surprised that none of my doctors had figured out that the cerebellum damage was responsible for my balance problems.  He seemed to think that, because he could find very little evidence of vestibular damage now, that must never have been my problem.

When I inquired about exercises for the remaining vestibular problems, and the cerebellum damage, he stated that he wasn’t aware of any.  When I asked again, trying to pursue possible places that did physical therapy, or exercises for balance that I could do at home, he just shrugged and would not, or did not, comment.  The unspoken message in the room was that I would never get better than I was.  It obviously wasn’t his issue.  He was in the business of diagnosing problems, not solutions. “Hope” was not his MO.  We’ve run into several doctors like him, and I have come to despise this philosophy.  Medical doctors by no means are required to be experts in rehabilitation but they DO NEED TO BELIEVE IT IS POSSIBLE and be willing to point their patients in those directions  We’ve run into these situations over and over and over again. You would think when they  see and hear my story, they would change their tune, but apparently not.  Apparently not.

That trip was a major setback.  I was sick from the test itself, sick from losing our loved pet, sick from being off my meds for so long, severely depressed.  I lay on the couch for days.  Finally our daughter, who was back in New York, got so worried that she called the vestibular specialist at On With Life.  Amy called me back.

She announced what we had heard from that doctor, about my vestibular problems being almost nonexistent now, was great news.  I said “How is it great news?!”  She said, “It means that our initial treatment worked really well, and also that you have been doing a great job at home with your therapy!  This is really great intel!  Now we know that your problem must be combination of anxiety and cerebellum damage, and there are definitely exercises we can do for that!”  The way she said ‘WE” suddenly filled me with hope.  Along with the “get on with it” tone in her voice.  I sat up on the couch, and asked what the first step was.  She explained, and my doctor certified me for another 3 months of out patient therapy at On With Life.  We got me back seeing  a therapist weekly  for my anxiety.   I had mourned, and rested, long enough.  Time to get back work.

Back on track.  Back moving forward.  Back getting On With Life.  They have a magical way of seeing a diagnosis not as a stopping place, but as just ruling something out, so that you can start exploring other possibilities. When the doctor told us he found very little sign of any vestibular damage, Amy knew how severe mine had been.  I had been throwing up constantly every time they moved my head, until Amy had diagnosed it.  I HAD been doing my exercises multiple times a day!  Amy heard success where I had only heard echoing disappointment.

I understand this test is the gold standard of vestibular tests.  We’re definitely fortunate to have a facility in our state that has this test available.  I don’t mean to frighten people away at all.  I know that my circumstances were, hopefully, very, very unique.  I’m just being brutally honest about my perception of this test and its echoing repercussions.  People have this test all the time.  I’m sure the sweet lady was as traumatized as I was.  They should have given her at least some warning.  There’s a an extremely large chasm between me and someone who is experiencing bouts of puzzling dizziness, which was everyone else we seemed to be seeing in the waiting rooms.  The majority of them had driven themselves, or at least were walking by themselves.

Thank goodness the doctor decided not to do the water test, whatever THAT was.  Apparently my results weren’t bad enough for that….we’ve often debated what that would be. I sometimes wonder if it is in anyway connected with how they used to test for witches.  I am just am certain I don’t want to find out, so please don’t tell me if you do know.

 

 

 

Through the Prism of Music

 

It all began with music.Language was next.

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 the adventure of just getting up in the mornings and getting ready for church, on a deadline, was plenty overwhelming for me.  The crowds, the noise, the disruption of my safe routine.

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.

This was sort of a big deal for me.  I knew that listening was basic, so I started humming along before I made a sound (our church is very loud.)

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 joy in the remaining years of my life, it was 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.

 

As a teacher I had always greatly enjoyed working with adolescent voices ( that may well have been due to my 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.  My years at church certainly came in handy now.

 

I had taught general music for quite a few 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.”  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.

Ode to My Mother In Law’s Hands

 

I’ve always loved the biblical story of Ruth and Naomi.  If you’ve never read it, I advise it, even if you are not a Christian.  I would recommend an easy reading version, like The Message or The New Living Bible if you are a starter. Just maybe not the The King James Version.

It is just so beautiful.  It is a love story, not between a man and a woman, but between a mother-in-law and her daughter-in-law.  Ruth was the daughter, Naomi was her husband’s mother.  They had lived in the same household for years, where Naomi was a foreigner, and developed a deep, deep love for each other.  After both their husbands died, Ruth did not desert her mother-in-law, but went with her back to Israel to care for her.  I like to think I would have done that for my mother-in-law, but I don’t know.

When I got pregnant, while we were still in college and unmarried, my then-boyfriend (now my husband for over 31 years and 4 children), graduated college that spring.  I still had a year left.  The next month he got his dream job offer, out in California, to teach a drum and bugle corp.  He had aspirations  of being a professional drummer, and where better than Los Angeles?

I was totally panicking, and alternating between begging him not to go and  bravely telling him to go ahead and follow his dream, that this chance wouldn’t come again.  And so he went.  I looked desperately for a degree I could finish before the baby came. My current degree program was music education, with several courses and student teaching still left to finish.   The baby obviously wouldn’t wait.  Keep in mind that this was 31 years ago, in a small town in northern Missouri.  Not exactly a hotbed of liberal thinking.

So I prayed about it desperately, and formulated a plan.  I was really close to a Bachelor of Arts…all I needed was six hours of a foreign language, plus a couple of other classes, and at least I could graduate with a degree.  That way, if I followed my boyfriend to California and enrolled in a college there, with a degree, I would only have to finish that state’s requirements to be able to teach.

Voila!  As good as done!  I enrolled in two summer courses: Spanish I from 7:30-9:30 Monday through Friday, and then French I from 9:30 to 11:30.  I was working full-time at the local Taco Bell to support myself, so my usual shift was 4:30pm to 12:30 am.  Enter terrible, terrible morning sickness.  I began losing weight at an alarming rate.  I couldn’t keep anything down.

My belly started to show, and my boss at Taco Bell, a deeply devoted, conservative Christian woman, noticed.  She called me into her office, and asked me if I was pregnant.  I said “yes.”  She said, “then I’m afraid I’m going to have to let you go.  Some of my customers are from my church, and they just wouldn’t understand. ”  I mumbled something through my tears, and rushed out. It’s entirely a miracle that my faith never wavered in God, just in some people who professed to follow Him.  Hmmmm.

And school was a total disaster, as you probably saw coming. Some days the same tests would be back to back in both classes, like the days of the week, or the months of the year.  I was hopelessly confused.

Next, the pastor of  childhood church called me.  He very kindly, offered to let me come back to the congregation if I would stand up in front of them and confess what I had done.  I protested that it was already done.  Was everyone else in the congregation going to stand up and confess everything they had done , just to keep me company?  Of course, he hung up on me.  I probably would have too.

I couldn’t think what to do.  I knew my boyfriend had told his parents.   I had met them during the previous spring break, and I had fallen in love with his family in a big way.

 

So I packed up my car and drove the 4 hours to where they lived.  Unannounced.  And they took me in.  Treated me like a daughter. Even though they both deeply disapproved of what we had done.   Even though they still had a high school son living there.  He and I became almost as close as brother and sister.  This went on for several months, while they let my boyfriend and I figure out what to do about our relationship.  He (fortunately!) decided he didn’t want to do life without me, and I was already there (but I admit I had a powerful incentive!), so after a few months, he drove back to Iowa to get me.  We went back to California, got married, and our life together started.

Back to Ruth and Naomi.  Naomi must have been a mother-in-law very, very similar to this.  She must have welcomed Ruth into her home like a daughter.  There would have been some tussles:  there always are with women.  But I think Ruth must have always known how fierce Naomi’s love for her was.  I certainly did.

My mother-in-law had severe rheumatoid arthritis.  It deformed her fingers and feet.  I can’t recall her ever, ever complaining about it.  She always wore heavy wool socks and Birkenstocks or clogs all fall and winter, and in retrospect I realize that it was because she couldn’t fit shoes on her swollen toes.  I just thought she was really hip.  I loved those feet in their sandals and clogs.

And her hands…her fingers were so twisted, so gnarly…so beautiful.  They both made you want to wince and to sing for joy to see them.  And they were never, never still.  They were always making casseroles, or pies, or setting tables, or holding endless pieces of toast and warming half full cups of coffee in the microwave.  Or petting her beloved golden retriever, Annie, Or hugging.  It was so indescribably wonderful to be squeezed by those skinny arms, and those hands.

 

I’m so extremely regretful that I was too busy to ever spend much time wondering why she no longer did the things that my husband had talked about her doing in the past….like sewing.  She was so talented.  If it ever crossed my mind, I think I just thought “Probably now that her kids are grown, she’s lost interest.”  But now I’m almost certain it was pain.  Of course it was pain.  Her fingers just couldn’t handle fine detail work. Now, since the accident,  I’m much clumsier than I was before, and I rely on several kitchen gadgets that I recalled from her kitchen.  I always, again, thought they were very fashion forward of her.Now I realize that they were absolute necessities, as they are for me.  .  I’m so sorry that I stupidly never spent much time thinking about how much pain she must have been in, or trying to find things that would have made tasks easier.   In retrospect, this seems monstrous.

I loved my mother-in-law’s hands.  Now that she’s gone, I think of them often.  I miss her so much, but especially her hands.  I wish I had held them more, warmed them more.  But I know she’s fine now and she’s telling me to do all that for someone else.  So I’ll try.  I’ll try.

Christmas Rises Again

Feeling fashionably cynical about Christmas?  Puttin’ on the snarky tone when you talk about it?  Or (secretly) enjoying running the list down of things to do/places to go/concerts to attend/things to buy?  Not me.  Not this year.

Yes, I admit, I’ve been overwhelmed in the past and secretly thought how amazing it would be to slip onto a plane or a boat or into a car and head off for a private, quiet, non-stressful holiday somewhere like the middle of the ocean or the Snow Lodge at Yellowstone.  Exchange 1 gift with my husband, then take a nap.  Christmas in a hot tub….now that’s the spirit.

I spent years deliriously joyful about it all–baking every cookie and treat possible, giving multiple gifts beautifully wrapped, running church musicals, playing for as many as 5 services Christmas Eve/Christmas Day, and feeling like zombie woman long into January when I finally mustered the energy to take the (really grossly dusty) decorations down.

The next stage was the slightly resentful downsized version–less decorations, less treats, still the same gifts, less concert involvement, more grumbling about the whole thing.  That wasn’t really the optimum way to enter the season.  Still working too hard at it but not enjoying much of it.

So I sat down and thought about it all.  What were the really, really good bits of it?  Sitting around the Advent candles in the dark watching my children’s faces as we talked about the prophecies of the Old Testament; ringing Salvation Army bells outside the mall with loud, insane groups of singing teen-agers banging on various assorted percussion instruments; looking at the tree in the evening with a glass of wine; eating the first piece of fudge (admittedly more shallow than the other things but truly a great moment in the holiday season).  So why not do more of that and less of other things?  Easier said than done, right?

So how to handle it this year?  Trying to put the first things first….scheduling the bell-ringing before other things jump into the schedule.  Buying less gifts (still unfortunately spending the same, though–young-adult children are EXPENSIVE!).  Changing up the decorations and simplifying (you mean you don’t have to put everything out every year?!).  Starting cards early.

Will it work?  I have no idea.  I’m sure I’ll still be rushed and a little resentful by the end.  I just think that if I put the big, good things in first, maybe some of the other little time-wasters will be displaced and just disappear, unregretted, without a trace.  After all, 7 kinds of treats are probably plenty, don’t you think?

Wishing you all a merry Christmas.  Peace and joy to you all.  No matter what your belief, I believe we all could use more of love and hope.  And besides–at the risk of offending you, the Baby was born to bring hope to all mankind.  That’s not a threat or fightin’ words.  That’s just a promise.  Image