Joey.  What do I possibly say about him?  Of course he’s awesome.  Everyone who sees him, especially when he’s in action, is stunned by his perfection.  And he is all of those things.  Beautiful, well-behaved, loves me, knows 200 commands, extremely impressive blood line.


And we naturally thought, because we had lived with a labrador for twelve years before as a much-beloved pet, that this would be similar.  Oh no, not at all.  Well, just not much.  There’s a huge difference, apparently, between a pet dog and a service dog.  Especially one from this place.


He has been, for me, extremely overwhelming simply all the time.  It’s slowly getting a little better, as I’m getting faster at caring for him, he’s adjusting to our routine here, and we’re establishing a pattern together.  I’m learning to read his signals;  my husband used snow fence to create a “fenced yard” out back so that sometimes I can sit out there and throw a tennis ball to him, and he can toilet outside.


Joey became my full-time job.  I, who had my hands full just caring for myself, and was so proud of beginning to do a few little jobs around our house again, couldn’t do any of that.  Not only that, but my husband was having to chip in to help with Joey several times a day as well.  There wasn’t time in my day for my self-care routine, let alone cleaning or cooking.  It was all consumed by Joey tasks.


This really took our entire family by surprise.  In the first place, we have never been close friends with anyone who had a service dog.  In the second place, this place in St. Louis takes great pride in being far more thorough than any other dog training place in the entire country.  I’m having to learn to balance all that, because I have struggled with being a real perfectionist myself.


Here are just a few of the dozens and dozens of rules about their dogs:  not ever off the leash outside, unless you have a fenced yard;  groomed daily; teeth and ears cleaned weekly;  exercised twice daily for twenty minutes each time;  kenneled 2x daily to prevent separation anxiety;  nails maintained with a battery-powered Dremmel 2x a week.   And because he knows so many commands, the challenge of not using one of those words in casual conversation is very great.


We had installed an invisible fence for our previous dog, Remo.  That wouldn’t be a possibility for Joey, it seemed.  Ever.


Our first week home, I had to hold his leash all the time, except for two brief kennel times each day.  Given that he had come home with me on Wednesday of the first week, and had been on the leash all evenings for a week and a half, this meant 2 1/2 weeks of holding Joey’s leash.


The second week home, he was allowed  to “drag” his leash.  This was really weird for him.  He was used to being no further than a leash length away from me, so he would follow me around all the time.  Having been in the bathroom with me for almost three weeks and being trained to “bump” things…..including doors….didn’t allow me any more privacy this next week.  It just had the added disadvantage of surprise.


The third week, he graduated to a shorter leash.  This was still weird.  The 4th week, he was bare in the house.  This is how we’ve been for several weeks.  Joey is still obsessed with me.  He follows me from room to room, from side  to side of the room, is right behind me when I turn around.


At this point, until it warms up and I can walk outside, he won’t be much use to me.  I can’t take him in public unless my husband is with me, because I’m not yet improved  enough to handle him on my own.  So my days are pretty much complicated with Joey care right now, for no return.  Vacuuming up his hair, cleaning and washing his paws when he goes our three times a day, grooming, exercising, brushing his teeth…..


I believe we will be a great team.  We will walk together outside, without me having to cling to someone’s hand, or wait until someone has time to walk with me.  I LOVE to walk.  That is the only form of exercise open to me now.  I would walk for hours if I could.


When I am able to go with him in other people’s cars, we will go and be able to be dropped off places.  For example, the mall.  Even with my hiking stick, it is far too overwhelming and open for me to maneuver on my own.  But with Joey, maybe someday it will be possible.  He is lovely and strong, and very willing to help me and take care of me.  I can definitely see that.


On days like this, though, in March when it’s muddy, no one can come and see me or take me places because of our stupid road,and it won’t stop the darned precipitation…’s so hard to hold on to that vision of summertime walks.  Our bible reading a few weeks ago was about Noah building the ark, and our pastor reminded us that it took Noah over 100 years to build the ark.


I just hope I don’t have to wait that long.


Shut In

When I was little, our church used to pray for the “shut-ins.”  These were always elderly people, confined to their homes, that most of the world had forgotten about.  Until last month, I was on that list at my dad’s church in my hometown.  One of my sons went to visit down there, and he brought me back a church bulletin.  There was my name on the list:  the list of sick and shut-ins needing prayers.  Every year on my birthday they send me a birthday card since my accident, so I suppose I should have know this.


I felt a shock of totally senseless rage wash over me before I came to my senses.  Of course I am a “shut-in” now, in the very classic definition.  It was just, in the way they had always used the word when I was growing up, those were the people to be greatly pitied.  For everyone to feel sorry for.  At Christmastime, we would go to their isolated farmsteads and Christmas carol with a box of groceries and and homemade cookies and pies and a loaf of homemade bread;  they would periodically announce from the pulpit that we were having a “card shower” for the person, and the entire congregation would mail that person a card (because obviously no one ever remembered to write to them any other time, I always assumed).



The term was associated, in my childish mind, with charity visits by my mother and me, to ill-smelling households, bad food, weird old people, and always, always, always being grateful to be out in the fresh air at the end of the visit and back in our own car.



And now my name was on that list.  And I knew they had announced a “card shower” for me, because I had just received several cards in the last few days.



I summoned up my courage, got out a nice religious card with flowers on it, and wrote them a (hopefully) grateful note, thanking them for the years of prayers and thoughts and cards during and after my accident.



I wrote them that I felt that the time had come for my name to be removed from that “needing prayer” list, because now I was doing much better, and was out and about more.  I ended it by thanking them again.



I haven’t been back there to check, and I don’t have the courage to check with my family that still attends that church to see if my name is gone now, but I hope it is.  I certainly needed the prayers during and right after my crisis.  And I know I still do.  But I also know that people get weary of  anyone’s name that is on the list for years.  And I cannot think of myself like that, I just can’t.  I have a life to get on with.  Even if it’s not very much of one sometimes.  Even if much of it sucks.  At least it’s mine, better or worse.



Back to School/Being Handicapped

For the last few Monday mornings, just for an hour each time, I’m back where I belong.  Helping kids, helping teachers, feeling a little useful at last.  In this case, four first graders who are struggling with reading skills, come out in the hallway–with their book containers—and read several books with  me.  Some of them work on sight words with me.  I have really come to love these kids, and this time with them.



I have to put my fingers under the words now, and I read very slowly.  Several kids have commented that they have never seen an adult do this.  It seems to immediately make them feel better about reading with me.  Who knew that I would now be so proud about being a terrible reader again!?


Char, a retired teacher, brought me lunch this summer and we visited for a couple of hours.  Toward the end of our lunch, she asked me if I would be interested in this opportunity.? And then she described it to me…she said she would be willing to help me set up the whole thing; she would come pick me up and bring me home each week;  she understood that I felt so badly that for three year, all that I had been able to do was TAKE, and thank goodness so many people had been willing to give selflessly to me or else I would have been totally sunk.  Only now, this fall, still with many, many people still pouring into me all the time, was I ready to let a little overflow out again.  And it feels so good to be able to give something back.  Anything at all.  Even a morsel.  I have been given so much.  So unspeakably much, and I still am needy all the time.




And I still  am very very very uncomfortable with it.  When I went back to On With Life to speak on the most recent  survivor’s panel, one of the questions was about “how do you deal with having to be helped?”  My answer always is “It’s super duper hard.  But you have to find a way to let people do it, and even manage to be gracious about having to be helped!” Plus you need to find a way to manage to let people know the best way to go about helping you, without actually getting in your way.  Especially if they’re going to be with you regularly.



I’m finding that the better I get, the more challenging this “deal with it graciously” thing is.    I hate being seen as “handicapped.”  I hate those license plates on our car with a vengeance.  But it’s what I am now.  That’s what I told them at OWL that day.  That, like it or not, we are the handicapped ones.



The very people I always used to watch with furtive looks  of pity and sympathy.  The very looks I see on people’s faces now that sometimes makes my blood boil with rage before I get myself calmed down and remember that THESE are the well-meaning people that just don’t know what to do to help a person like me. People like I was a mere three years ago.  People who want to help you and don’t yet know what to do unless that handicapped person–ME–stays calm and simply tells, or shows, them how to be of service.  Then they always gladly do it.  Always.  Always.  As I would have.  It’s not at all their fault that they don’t know yet what to do.  Of course they don’t.  They’re not psychic.  In my extreme impatience now, I seem to be expecting everyone around me to be psychic somehow.


It seems that, once you achieve that status of “handicapped,” you become very sensitized to the “look.” Any of you “differently abled” folk out there will instantly know what I’m talking about, and it’s not always a look that wants to help you.  Oh, no.  But sometimes it is.  And I’m finding that, if you pin them down with a smile so they can’t easily slide away, you probably have them right where you want them.  There’s great power in being weak.


By far my biggest struggle right now is being “gracious” to all the wonderful people continuing to do so much for me.  Most of the time I am tearfully grateful:  but then, one in a while, for no obvious reason, I will get in a simply FOUL mood and not want to smile, or say “thanks”, or accept their hand or their arm, or the help that I know that I desperately need.  I just want to stride out by myself and fall pridefully, stupidly, on my face.  I don’t know why I am like this.  It’s not at all attractive.




I guess I’m just finally giving into being a normal human being.  I’m out and about more–almost every day now–which means in other’s people’s cars every day.  So I have to be polite first thing in the morning, which I don’t suppose I ever really was.  I always had the buffer zone of my drive  to work things out of my system before I met with people. But this is a good new trouble, and I’m sure the kinks will work out.  It’s a next step in my new life.  As Martha Stewart says,  “It’s a good thing.!



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?

A Different Route For A While

I faithfully sit at the piano several times a week, reach up, turn on the metronome, and dig in.  It started out in complete frustration.  My inability to remember simply anything, when I knew just months ago it had ALL been so rich, so fulfilling, was unspeakable.  I would end up just screaming in pure rage.  AND then that would trigger a migraine.



And then, bit by bit, it started coming back.  I could see that my diligence not only made me happy, but it brought my family joy.  It seemed everyone that had ever known me before asked “how’s the practicing coming?” and just lit up when I told them how I was progressing.


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

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


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


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

Neck Brace and A Miracle

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


Anyway, because of that old high school stupidity I have had degenerative arthritis in my neck for years.  Then 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.