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.

 

Scars

 

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

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

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

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

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

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

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

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

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

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

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