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.

 

 

 

 

 

 

 

 

 

 

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?

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 several years ago, it started hurting so badly that I went to a doctor several times.  After nothing seemed to work,  my doctor ordered a course of physical therapy.  During the PT,  we found that, because of my recent switch to bifocals,   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. Go figure.

 

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.   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 had been 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.

Thousands of people were praying for me.  Praying, first, for me to awaken from my coma, and to not stay in a “vegetative state.”  And then, when my family realized the extent of my neck injuries, they requested prayers for that.  But first was for me to WAKE UP.  After several days in a coma the odds of you ever waking up, or regaining any real function, drop drastically.  My family, my doctors, and most of all my insurance company were acutely aware of that.

 

And then, I started waking.  And then, within a few days,  a bed became available at On With Life,  I was delivered there by ambulance, and the progress was phenomenal from then on.

 

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 office.  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.

Scars

 

I don’t know where to begin here.  So…feet up?  I prefer ending with the face.

Every time I take off my shoes, my attention is drawn to the fact that my right ankle and foot are slightly larger and more purple than the left.  This is the side that the truck hit, and my injuries were most severe here.   There’s still a lot of pain and tenderness in my right foot, ankle, shin, and knee.   For a long time after I came home, this area was always extra cold. But, unfortunately, it also misinterpreted “heat” as “cold”, leading to some very near mishaps with bad burn situations.  Close vigilance in the way of actually reaching down and touching my supposed “freezing” foot, only to find out it was burning hot, prevented some pretty bad situations.This is a little better now, but still continues to be a problem.  I’m sure the reason I don’t notice it so much anymore is a combination of  gradual improvement, I’ve gotten used to it, and I’ve found adaptations.  Seems you can basically pretty much get used to anything, unless it’s constant disabling pain.  Thank goodness I don’t have that anymore!

More about my temperature:  a common result of brain injury is the body’s inability to control its own internal temperature.  During the fall/winter/spring, or simply anytime I’m indoors, away from the sun and in air conditioning, I’m cold.  Freezing cold.  Sometimes it gets so bad that my body starts shaking uncontrollably and can’t stop.  This is embarrassing for me, and bewildering for strangers.  Fortunately it only happens infrequently, but still…

To counteract this I wear gloves simply all of the time, even indoors.  Except in the heat of summer, I carry a blanket around to throw over my legs while I’m sitting.  I always wear two pair of pants, and often three shirts. Big change for a girl who always called herself hotblooded and used to wear sandals in the depth of winter.

Next comes the scar from the feeding tube.  This is what left me with my “second belly button.”  The feeding tube completely saved my life the seven weeks I was in a coma.  I had the feeding tube in until long after I learned to swallow again.  The doctors had to determine me to be getting enough nutrition from food to not need it anymore.  Getting it out was not fun.  Let’s just leave it at that, shall we?

My entire midsection is a network of  scars.  I use lots of lotion to keep them soft, but even so  some of them are raised and hard.  Whenever I am tempted to call them ugly, my husband sweetly corrects me and tells me they are the most beautiful things in the world to him. Because of those scars, I am alive.  I  go along with him,  but  I secretly still think they are ugly.

Sometimes they itch madly. Occasionally, for no reason,  my neck flushes bright red–a side effect of one of my medication.  When this happens, the tracheostomy scar in the front of my neck seems to positively glow white in contrast to the crimson of my neck.  I can feel the heat rising up from my neck, and it quickly transfers to my embarrassed cheeks.  Is there a word for  infinite embarrassment?  That would possibly be me at these times.  But such a trivial thing!

Sometimes I manage (after getting dressed in the morning) to forget about most of my scars for hours.  Then I change my clothes, or take a bath,and am startled to see they are still there.  My short term memory loss continually gives me the gift of forgetting–and rediscovering–over and over again.

For a few weeks, when I first came home, I flirted with the idea of trying to hide  my tracheostomy scar with a scarf.  After all, it’s not very pretty.  Aren’t women supposed to be all about trying to look attractive, hide our  flaws?  Aren’t we taught to dress to minimize our imperfections, not flaunt them?

And then I started thinking about that scar, what it said about me, my life, my experience, what I had been through.  Of all my scars from the wreck, it was by far the most visible.  By trying to hide it with a scarf, wasn’t I saying “No, no, it wasn’t ME that was in that accident!  You must have heard wrong!  That was someone else entirely!”  Wasn’t that sort of pretending that the most significant experience of my entire life was somehow shameful, incidental, something to be quickly forgotten and covered up and brushed aside?

I decided otherwise.  It was hard for me.  I’m pretty vain.   I don’t ever try to purposefully flaunt that scar because I still find it very unattractive, but it is a key part of me and what I’ve come through.  Just like my silver hair, and my lined face.  I came by this silver hair and these lines honestly, and I wouldn’t trade a single day.  So what was I saying about the scar by trying to hide that? After all, I survived what my scars represent.  By not hiding them, especially the visible ones, I hope I’m sending the message to people who see them that they can survive too. Because, unfortunately, bad things are coming to us all.  We have to stick together, scars and all.

 

 

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.