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!

 

 

Advertisements

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 anything, make sense of everything, when I knew vaguely that it had all, at one time, been the source of so much joy and meaning, both for me and for everyone that came in contact with me, was just crushing.  And then, bit by bit, it started coming back.  I could see that my diligence not only made me happy, but it brought my family joy.  It seemed everyone that had ever known me before asked “how’s the practicing coming?” and just lit up when I told them how I was progressing.

 

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

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

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

 

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

Neck Brace and A Miracle

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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

 

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

 

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

 

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

 

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

 

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

Conversations

 

 

 

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

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

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

And then…the accident.

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

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

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

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

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

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

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

 

 

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

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

 

Emotionless

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

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

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

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

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

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

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

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

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

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

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

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

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