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.



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!



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?

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 


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.




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.