A Light Spirit part 1

Forgiveness.  We seem to talk about the concept a lot, but still not get how delicious it feels to really live in it.  Both accepting it for ourselves, and then being able to pass it on to others.  I never quite did before, but I certainly felt as if I did.  Maybe I had a few glimmers, I don’t know.  I certainly never felt that I was totally forgiven myself.  Even though I had taught about it for years;  somehow I had never completely taken on the concept of “God remembers your sins no more” for myself.  Surely it couldn’t be that easy….

 

So, this put a little crimp  in my journey toward forgiving the driver that did this thing to me, that totally left my previous life broken and  shattered beyond repair,  Oh, it wasn’t that I didn’t want to!  I wanted to with all my heart.

 

It was neither simple, easy, nor quick.  But then, I’m coming to realize, nothing really worth having is ever easy.  Or simple.  Or without a lot of pain.  And sometimes, it seems to me, an unnecessary amount of pain, but I suppose every toddler thinks that about a loving parent sometimes.

 

 

I  now very rarely think about the other driver, and when I do, it is just to wonder how he is doing.  Weeks go by when I forget why I am like this.  But I wouldn’t have reached this level if I hadn’t forgiven that driver.  Absolutely totally, but not once and for all, unfortunately.  Every time I experience a new setback, I want to pull my forgiveness right back and  harbor my old bitterness.  It feels so good, like a stained and smelly old security blanket.  But every time, I’m getting better at this “forgiveness” thing. As a former musician, I certainly know the value of practicing a skill you want to master.

 

 

This guy T-boned my little, beautiful bright blue Cobalt. He had a stop sign, I didn’t.   I was driving, the police told me, at their best estimates, a couple of miles under the speed limit.  I never saw his big pickup truck.  For him, it’s a blind intersection.  They say he ran his stop sign at around 73 miles per hour.

 

He was taken to the hospital that night, and released a few hours later with mild injuries.

He was 19 years old, unemployed, from a small town west of our city. I spent a year teaching  at a school near there,  and the school he attended was in our conference.  I am very familiar with the type…macho young guys, driving big pickup trucks too fast, not stopping for no wussy stop signs.  This was his second accident in 18 months, and both times he had been at fault.  The first time he had caused the other car to flip, and that driver had been taken by ambulance to the hospital.

 

Kind of a poster boy for bad decisions.

 

 

 

So……those first few days I was in critical condition, people would often ask my husband “what do you know about the other driver?  What do you think is going to happen to him?”

 

 

My husband told me he would reply that he neither knew nor had the mental energy to spare for that right now, that all his thoughts and prayers and love were for me.  He had no energy for hate.  He also shared with me that he spent a lot of time with this saying, which has been attributed to many different places and peoples:  “Bitterness is like drinking poison,  then expecting the other person to die.”

 

My husband is not perfect.  He simply tries hard.  He struggled very hard during those days, weeks, months, and he still struggles sometimes.  But at first, he said, that question simply floored him.  How on earth could those people waste their time thinking about the other driver, when they knew I was hanging between life and death?  He was truly stunned by that.  And how on earth could they think he, or my kids, had any time to speculate about anyone but me in that bed in ICU, broken and battered and unrecognizable?  Every minute, every hour, every day was another crisis, another surgery, more terrible news.

 

No one knew the facts then.  How on earth would anything happening in the life of the other guy change the flurry of events surrounding me?  Or cause this not to have happened?  My high school son had to call his other three siblings and tell them to hurry, that their mom probably wouldn’t be alive when they got there.  He had to do this because his dad had to be available to talk to the surgeons.    At times like this, who on earth is thinking about retribution?

 

Fast forward days, weeks, months:  I did survive.  I even made what most would consider a miraculous recovery.  But there was a long time when my survival, and then how well I would survive, or if I would even wake up, was a huge question mark.

 

 

If you are a regular reader of my blog, you know all about On With Life and the miraculous things they do there.    While I was still inpatient there, and I was recovering so quickly, one of our local TV news  stations (they had covered my initial wreck ) came out and filmed a follow-up story with my daughter and me.

 

My speech aphasia was still pretty profound, so my daughter was kind of coaching me through the interview.  I was extremely nervous, because I knew what I wanted to say, and I was really worried that I wouldn’t be able to get my planned message out.  So she was sitting on the couch right across from me, smiling at me, giving me courage  And it worked.  At that point, this injury just seemed like a big “blip” in my lovely life.  I still hadn’t grasped nearly the vast or permanent scope of all this. You see, I’m naturally positive, and I was viewing this through a completely malfunctioning  brain.

 

And I was improving at such a quick clip, so unexpectedly, that no one knew where it would start to slow.  So in my badly broken, yet optimistic brain, I was holding on to the wild dream that my school would surely have to hire a long-term sub for the rest of this school year, and probably even next year while I was working on my recovery.  But then I definitely would be BACK!!!  Playing piano, singing, teaching, even at my old school very possibly.   ANYTHING in those crazy days seemed possible.  So, of course, when I looked at the camera and said “I forgive him” and “I love him,” it was a stretch, but not too huge.  That, I knew, was what Jesus called His believers to be.  Light in this hurting world.

 

And I had never grasped the concept that I was totally forgiven myself.  I was trying to do it all by my own will.  I thought I had enough love and forgiveness for all of us, and I  truly believed  it was coming from God.

 

And then, over the next weeks, months, years, my progress slowed.And slowed.  And just kept on slowing.   What had been measured in days started taking weeks, then months, then came the advent of years with only very, very, very small changes.  Reality came crashing in.  Wave after remorseless wave.  Threatening, over and over again, to drown me in pain and memories and crushing disappointments.

 

It seemed like running endlessly up against “never” or “not like this.”  My beautiful dreams started vanishing, and the pain of perpetual disappointment was crushing.  I had been so darned optimistic, which came to seem synonymous with words like stupid to me.

I would never be at my old school district again.  I would never work full-time again.  I would very probably never work anywhere anymore again.  I am still a long, long way from ever driving, and probably will never.    Which I still think sucks.  I still can’t walk, by myself without holding onto someone or something because of my extreme balance problems. I don’t play piano anymore.  I don’t sing anymore, except sometimes a little in church.  I feel dizzy all the time, which makes me pretty nauseous all the time.  It feels like I’m always on stilts.  I can’t eat in public without very careful planning.  I have severe intestinal issues, and thank goodness I stay home most of the time.  I can’t do long car rides without severe repercussions  Much of the time, it seems to me, I’m not good for much anymore.  I can’t even manage to make a single dinner all by myself.  So…..the things I had to forgive him, and God for, were piling up.

 

And, worse of all, I felt like a total idiot.  I felt everyone else had seen me, with my talk of “I’m going to do_____” and known it would never be possible for me in any way, and just been humoring me.  That was by far the worse, and there’s still a lot of that going on in my life.

 

As each of these separate issues came to light, and my supposed “blip” in my happy life became huger and huger, forgiveness became………..more of a challenge.  This was far from temporary.  This was an extreme, total, permanent disability.  Oh, I had not bargained on this!

 

Then, a  few months after we came home, we were in church.  Our head pastor was speaking about Jesus forgiving the soldiers nailing Him to the cross while they were doing it.

 

The other driver in my accident, who I was starting to kind of be comfortable with resenting sometimes, had had no idea what was going to happen to someone as a consequence of his rash decision.  It was nothing at all like the soldiers nailing Jesus to the cross.  Why was I struggling with forgiving him still?

He had just been momentarily stupid, not mean.  I had taught dozens of boys just like him.  Would I want them to have been never forgiven for something they did when they were nineteen?

And then our pastor said these words:  “We forgive not because they deserve it, but because we do.”

 

 

 

I fell apart.  I  realized that I had felt, somehow, that by continuing to forgive this guy, that I was telling the world (and him) that I was all right with what he had done to me.  That all this was OK.  That to be that woman I had been in that previous TV interview again, when I hadn’t realized so much, when I was so much more naive, would somehow let him off the hook for everything that had happened since.  I hadn’t really intended to forgive him for quite this much.

 

 

 

 

But maybe, just maybe, the only one I was actually punishing with all this anger and rage was…..me.  I was angry at God for letting this happen to me.   For not having just taken me up to heaven when He had the chance.   I was angry with that other driver.  I was angry with me for not keeping my loving and forgiving heart.  I was so tired of all this over-thinking and and failure and just everything.

So I started my long, slow, grueling process.  I didn’t want to do this at all, and most of my prayers these months had been angry.  Which, I believe, is OK with God.  That is why we have the book of Psalms.  He understands human anger and confusion.

 

So, at first, every morning I  started with just saying “God, please help me want to talk to you nicely again,  Please help me want to be friends with You again.  And please help me want to forgive him.  Even though I still think he’s a great big creep.”

 

It was quite a few weeks before I could manage to drop the last insult.  But I did.  Off and on, and then all the time.  And it only very rarely slips back.

 

 

And after a few weeks, I started being able to add a few words, and then a few sentences, until within about six months I was able to actively pray that I would be able to forgive him and mean it.

 

And, about a year later, I started praying for God to bless him.  Not in the sense of “Please God, keep him from ever doing this to anyone again” way that I initially just ACHED to,  but just to bless him, and then I had to leave it up to God.  I think this was the most difficult step.

 

 

And I finally had to accept that God had forgiven me.  Forever.  Completely.  Something I had just never taken on board before, so that I had had only a small sense of what “I forgive him” truly meant.

 

That none of this was my fault.  All the trouble and suffering I had caused my family, and was still causing them.    Everything I had ever done in my whole, entire lifetime God had already forgiven me for.  That was the entire purpose of Jesus’s death.  All I had to do was ask, and then accept.  Which, by the way, was by far the hardest part.  And I believe it is for most people.  We are a proud bunch.  That God really saw me for who I was, good and bad, and loved the whole shebang.  Unbelievable.  That I had to be totally busted up to and practically good for nothing, to finally grasp His love.

 

 

end of Part I….

 

 

 

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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.

 

 

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?

Neck Brace and A Miracle

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

 

Anyway, because of that old high school stupidity I have had degenerative arthritis in my neck for years.  Then several years ago, it started hurting so badly that I went to a doctor several times.  After nothing seemed to work,  my doctor ordered a course of physical therapy.  During the PT,  we found that, because of my recent switch to bifocals,   I was holding my head at such a weird angle trying to read the music and look at the students, back and forth, that that was triggering this latest episode. Go figure.

 

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

 

 

 

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

 

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

Thousands of people were praying for me.  Praying, first, for me to awaken from my coma, and to not stay in a “vegetative state.”  And then, when my family realized the extent of my neck injuries, they requested prayers for that.  But first was for me to WAKE UP.  After several days in a coma the odds of you ever waking up, or regaining any real function, drop drastically.  My family, my doctors, and most of all my insurance company were acutely aware of that.

 

And then, I started waking.  And then, within a few days,  a bed became available at On With Life,  I was delivered there by ambulance, and the progress was phenomenal from then on.

 

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

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

 

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

 

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

 

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

 

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

 

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

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 

                        and….  

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.

 

 

 

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.