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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pink hair

I now have PINK hair.  It was my husband’s idea, and I immediately loved it!  It’s been pink for about five weeks now, and it has been a very sweet five weeks of of no one asking if I’m his mother.  Of course, they might still, but somehow I don’t think so, do you?  I just got it redone about a week ago, and this time it’s a pretty startling sort of fuchsia (she left the color on too long, but that’s all right with me.)  The first time, it was a lovely smoky rose color.

 

I get frequent “I love your hair!” from store clerks, young people, friends who haven’t yet seen me, etc.  I don’t know if all of those comments from my friends are absolutely sincere or not, but I know they all see how much happier I am now.

 

Before I got it dyed, I did a lot of reading up on the new trend of women dying their hair pink.  And I am more than OK with the empowerment of the message it is sending.  I say that I am a feminist, but just not an angry feminist.  After all, I expect to be listened to:  I expect to vote:  I expect to be able to work, to drive, to be able to choose NOT to work, be taken seriously.  And I know enough history to be aware that all those things are courtesy of the very strong lovely women who came before me.  So I think, how on earth could I not be a feminist?  I just think women who say they aren’t feminists are now rejecting some of the baggage that goes along with the term these days, but THAT’s definitely a rant for another time and place.

 

But I have never ever ever seen men as my enemy.  I happen to love guys.  I love my sons, my daughters, other people’s children.  But I will always have a real soft spot for women, I admit.  Women’s choirs were always my secret passion.  I got a huge thrill out of seeing them develop into strong, confident young women.

 

And my pink hair is definitely a statement to myself, and to everyone who sees me, that I am back in the business of building people up somehow.  How, exactly, is not quite clear yet.  But I am becoming a little more confident that it will.

Joey

 

Joey.  What do I possibly say about him?  Of course he’s awesome.  Everyone who sees him, especially when he’s in action, is stunned by his perfection.  And he is all of those things.  Beautiful, well-behaved, loves me, knows 200 commands, extremely impressive blood line.

 

And we naturally thought, because we had lived with a labrador for twelve years before as a much-beloved pet, that this would be similar.  Oh no, not at all.  Well, just not much.  There’s a huge difference, apparently, between a pet dog and a service dog.  Especially one from this place.

 

He has been, for me, extremely overwhelming simply all the time.  It’s slowly getting a little better, as I’m getting faster at caring for him, he’s adjusting to our routine here, and we’re establishing a pattern together.  I’m learning to read his signals;  my husband used snow fence to create a “fenced yard” out back so that sometimes I can sit out there and throw a tennis ball to him, and he can toilet outside.

 

Joey became my full-time job.  I, who had my hands full just caring for myself, and was so proud of beginning to do a few little jobs around our house again, couldn’t do any of that.  Not only that, but my husband was having to chip in to help with Joey several times a day as well.  There wasn’t time in my day for my self-care routine, let alone cleaning or cooking.  It was all consumed by Joey tasks.

 

This really took our entire family by surprise.  In the first place, we have never been close friends with anyone who had a service dog.  In the second place, this place in St. Louis takes great pride in being far more thorough than any other dog training place in the entire country.  I’m having to learn to balance all that, because I have struggled with being a real perfectionist myself.

 

Here are just a few of the dozens and dozens of rules about their dogs:  not ever off the leash outside, unless you have a fenced yard;  groomed daily; teeth and ears cleaned weekly;  exercised twice daily for twenty minutes each time;  kenneled 2x daily to prevent separation anxiety;  nails maintained with a battery-powered Dremmel 2x a week.   And because he knows so many commands, the challenge of not using one of those words in casual conversation is very great.

 

We had installed an invisible fence for our previous dog, Remo.  That wouldn’t be a possibility for Joey, it seemed.  Ever.

 

Our first week home, I had to hold his leash all the time, except for two brief kennel times each day.  Given that he had come home with me on Wednesday of the first week, and had been on the leash all evenings for a week and a half, this meant 2 1/2 weeks of holding Joey’s leash.

 

The second week home, he was allowed  to “drag” his leash.  This was really weird for him.  He was used to being no further than a leash length away from me, so he would follow me around all the time.  Having been in the bathroom with me for almost three weeks and being trained to “bump” things…..including doors….didn’t allow me any more privacy this next week.  It just had the added disadvantage of surprise.

 

The third week, he graduated to a shorter leash.  This was still weird.  The 4th week, he was bare in the house.  This is how we’ve been for several weeks.  Joey is still obsessed with me.  He follows me from room to room, from side  to side of the room, is right behind me when I turn around.

 

At this point, until it warms up and I can walk outside, he won’t be much use to me.  I can’t take him in public unless my husband is with me, because I’m not yet improved  enough to handle him on my own.  So my days are pretty much complicated with Joey care right now, for no return.  Vacuuming up his hair, cleaning and washing his paws when he goes our three times a day, grooming, exercising, brushing his teeth…..

 

I believe we will be a great team.  We will walk together outside, without me having to cling to someone’s hand, or wait until someone has time to walk with me.  I LOVE to walk.  That is the only form of exercise open to me now.  I would walk for hours if I could.

 

When I am able to go with him in other people’s cars, we will go and be able to be dropped off places.  For example, the mall.  Even with my hiking stick, it is far too overwhelming and open for me to maneuver on my own.  But with Joey, maybe someday it will be possible.  He is lovely and strong, and very willing to help me and take care of me.  I can definitely see that.

 

On days like this, though, in March when it’s muddy, no one can come and see me or take me places because of our stupid road,and it won’t stop the darned precipitation…..it’s so hard to hold on to that vision of summertime walks.  Our bible reading a few weeks ago was about Noah building the ark, and our pastor reminded us that it took Noah over 100 years to build the ark.

 

I just hope I don’t have to wait that long.

My Unwelcome Neighbor

 

I have a really annoying neighbor who moved in uninvited three years ago, and just won’t leave.  I’ll call him Mr. V-Stib.  He has a cousin who visits sometimes, and then it gets MUCH worse.  They really partay when they’re together.

The cousin is BPPV,  the most common vestibular problem.  I do exercises every day to mostly keep this guy at bay,  Whenever he comes to visit, which is about twice a year, really bad things happen.  Every movement of my head  results in violent nausea.  But–on the other hand, when he does show his ugly face, we can call my doctor and tell her that he’s here again, and get an order to go back to On With Life and get treated for he/it. Then  I just need 6 or 8 bi-weekly sessions of physical therapy to recoup the ground I lost.

That all sounds simple.  The reality is that, one morning I wake up, start to get out of bed, and immediately the world erupts into violence.  I might throw up, and I might not.  But I definitely feel like it.  Only my husband can take me to get treatment because I am in no shape to travel with anyone else and he has to get a day off.  At the risk of TMI, I always have to take a vomit bowl in the car.  Just saying’.

So usually I’m like this for several days while all these arrangements are going on, and we are getting all the delights of insurance worked out.

The “treatment” involves me laying down, usually with a trash can by the end of the bed (just in case.)  Then they have me roll rapidly from side to side, and several times with my head hanging off the edge,  and  then they watch my eyes spin.  Somehow from all this they can tell which ear canal those darned calcium crystals have migrated to this time.  It’s definitely not fun.  But I’m very very very grateful they can do such an impossible thing.

That episode earlier this summer turned out, despite days of pain-in-the-neckness, to be a blessing in disguise because it resulted in me getting a doctor’s order to go back for some much-needed physical therapy.  This really gave me a good start on my summer. And at the end of all this, I don’t have to deal with the effects of this one every day.  And that is sweet.

My permanent neighbor  is bilateral hypo function.  This one is pretty rare.  They say I have some permanent loss here, but not severe.  This one is low-grade constant all the time, but occasionally I go through periods of weeks where it is much, much, more severe. This  one is so complicated–I guess those of you that are THAT interested can look it up–but among its many personal delights for me are what I call my “personal earthquakes,”, which I think is pretty explanatory.  Or how I constantly feel like I’m walking through a funhouse, and when my hypo function is really acting up everything is in huge motion.  That’s fun. I read one description of it that described it as “always on a balance beam.”  That’s probably the best thing I’ve heard yet.

Another exciting extra I got  with my purchase of hypofuction:  frequently, I feel an invisible  push when I’m walking.  Given that my balance is pretty precarious at the best of times, this feels just plain mean.  So  I’m away from home, feeling sunny and confident, and trying to stride briskly out in public with my hiking stick, and suddenly I feel a hard shove that causes me to stumble.  And the shover just won’t stop.  He–somehow it is always a “he”  (sorry guys, but I guess I picture him as a big bully).

This is not at all funny, no matter how hard I try.  When I  suddenly am afraid it could happen at any time, it’s really hard to be so darn confident.  To not hunch over.  To not frown. And to put my shoulders back.  To take big steps.  To not suddenly become a sniveling heap of whining humanity.

But yesterday I had a revelation.  Earlier this summer, when I had my other reoccurrence, my therapist asked me to step up on a foam pad.  I couldn’t, even with her holding on.   I felt too dizzy still.  Then she went and got a weighted vest, put it on me very snugly, and held on to me lightly  and asked me to do it again.It was much easier that time.  I did it several times, and asked her what the heck was going on?

She explained.  My v-stib occurrence had been so harsh this time  that I had been having mini panic attacks, imagining that they had come back.  My imagined symptoms were maybe worse than my real ones were now.   My paralyzing fear was stopping me from doing things much more profoundly than the v-stibs themselves ever would be able to.

That was another life-changer that my illness has to teach me.  There just seems no end to the lessons that this pile of crap has for me.

So, if God won’t release me from me from Mr. Stupid V-Stib, if he’s here for the duration of my life–as it seems he is–I’m apparently going to have to make peace with him.  He won’t move, and I can’t move.  I’ve tried fighting him, and I’ve lost.  He’s still here.  So I’m going to have to make peace with him.  This is my fifth day of thinking of him as a fairly unpleasant neighbor.  People have them.  We don’t live in a neighborhood, but we hear stories.  And we’ve worked with some unpleasant people before, so it’s not like we’re beginners at this sort of thing.   Apparently God thinks I have something I need to learn from Mr. V-Stib.

I had been trying to avoid doing anything  that would bring on the symptom. The repercussions in my head and my stomach were so unpleasant.  But for the last few day days, I’ve been trying not so much to purposefully “lean into it,”, but to just behave normally.  To get on with my life.   And I’m finding, that it’s really not that bad, when you take the fear out of the equation.  Whatever I’m doing, whether it’s washing the dishes, walking to the refrigerator, or putting something away, if I feel something different, I just pause, think about it, and go on with what I was doing.  And already I find that I’m getting a little more used to it, I think.  As my favorite neurologist said, “the brain is a wonderful thing.  There seems no end to what it can get used to, adapt to, or how much it can improve from an injury.”  There seems to be a little of all three of those finally going on here.

OK, those words sound good.  They sound brave.  Here goes.  I almost convinced myself. Plus that last couple of days, he’s been bothering me much less than when I started this post.  That definitely helps my attitude about all this.

But not his cousin, Mr. BPPV.  Anytime he shows up, I’m definitely showing HIM the door!

 

 

Diving Into a Different Pool of Meta

As I look back over all the essays I’ve written, both before and after the accident, slowly but surely I begin to see vague glimpses to my all-consuming question, “God, what on earth am I good for now?”  I mean, every time I try to talk about this to my family, my friends, my counselor, or basically anyone else they just quickly jump in and say “You’re LOTS of good!  Look at all the things you can do!”  Or there’s the tack of “It’s not what you DO that matters, it’s how you make people FEEL.”  Well, all too often, despite my best intentions, I make the people around me feel like total crap.  How do I justify that?”

I decided this spring that if I couldn’t do much stuff, at least I could make the people that come to me feel good.  Most of the time that works.  Much of the time.  And then……..I suddenly get into a terrible terrible terrible funk and just want to tear everything and everyone down for no reason.  And now I am verbal and clever enough again to get it done with extreme efficiency.

I am NOT a passive person.  I’ve made great strides at waiting,  not pushing, in these past 3 years.  Oh yes.    I’ll freely admit that I was pretty sucky at waiting before.  But I really need, for my family’s sake and myself, to find something productive and creative to do with my time.

I keep trying different things and striking out out at all of them so far except for one:  telling my story.  And wow, do I have a tale to tell now! I suppose it’s just like a good fairy tale, or an adventure story, where something interesting has to happen to the hero/heroine.  Some great cataclysm.  Maybe that’s why He allowed me to live, so that I could testify.  Writing is something I have always loved.  In college I was so freaky passionate about my writing and English classes that I ended up with a minor in English.

But that’s in the past, and a little bit of remembering goes a long way.  No, the very sticky bit is to not get “stuck.”  Stuck in only being able to see things through one lens, from one angle.  That’s why cars have a huge windshield but also are equipped with small side and rear view mirrors.  You’re supposed to spend most of your time looking where you’re going, but sometimes glance back where you’ve been and see what’s coming up from behind.  I just made that up, so possibly it’s the stupidest thing ever.

It’s just how I have to live now, though.  I can’t go back to how  I was.  That boat has sailed.  I have to imagine a new way of being now.

If piano or singing or teaching or choral conducting are not possible right at this time, writing seems to be something that I can do, and from my home.  Goodness knows that I have enough peace and quiet and time to get it done now!  There’s the niggling problem of no income, but I just need to finish my book right now and who knows?

My oldest daughter and my husband bought me this computer which was identical to the one I used to have at school, so I could understand how to use it.  Things weren’t going at all smoothly with our home laptop….so I was really grateful for this computer!  Maybe you can teach an old dog new tricks, but very possibly not a brain-damaged dog.  At least not for a good long while.

All my family spent so much time with me, in evenings when they were already tired, editing my feeble beginnings, because I simply couldn’t see much of anything.  I would misspell, use run-on sentences which  I probably never would have before, and I just couldn’t see punctuation  marks at all.  It’s much better now but still a problem.  If you read my blog from the beginning, you’ll see that my entries are getting longer and more complex, although my family kept me from publicly humiliating myself.  They edited out most of the  big glaring mistakes. They are all great writers and I owe them all a huge debt of gratitude.

At first I had to learn the basics of typing and computer keyboarding again, and try to remember how the darned thing even worked. I told my speech therapist that I was working on a book, and I was struggling with typing.  She showed me a wonderful voice recognition software program that we could buy very cheaply, and it all seemed great!  Luckily my husband had me try out the free one that came with my computer first….I sat down to start in great excitement.  I hadn’t reckoned with my newfound autism.  I could not manage somehow to get my thoughts out of my brain and into my mouth in any sort of a fluent fashion.  The minute I would start sitting in front of the microphone I would just freeze up.    So I realized there was no other solution to getting it done than relearning how to type.

This is so unbelievably meta—writing a blog post about me learning to write again, and how this may be my new path towards life.  It’s just like some of my staff developments in the past, where we went “meta” into what learning really is.  But I secretly used to sort of dig that stuff, even though I would always have to make the obligatory “this is such a drag!” groans so the other music staff wouldn’t think I was too much of a geek. Feels really good to be thinking that deeply into things again.  I don’t consider myself “creative” in the sense of coming up with original ideas:  my head has just never been filled with plots, ideas, characters, or situations.  But IDEAS!  Come to me with the germ of an idea, and I can, as my husband has often regretted, build it in a matter of hours into a full-blown skyscraper of a concept, which may or may not ever happen.

I know you’re already poking holes in this idea.  “But whatever happened to your supposed need to bounce ideas off other people?  Aren’t you forgetting about that?”  No, I am not.  That is a problem.  A kind of huge one, right now.  But I can always change:  people can.  And as the song goes, “there will be an answer….let it be.” Come on, let’s all sing it.  I can hear you out there humming right now.  Louder.  Take a bigger breath….you’re dealing with a choir teacher here.

 

 

 

 

 

 

 

 

 

 

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.