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.

 

 

 

 

 

 

 

 

 

 

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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.