My Body Talks Too Loud

This afternoon I had to get out and see someplace that wasn’t the inside of the van I live in.

It’s been in the 40’s and 50’s here in Northern Arizona.  Very beautiful, too, when not spitting “wintry mix.”  Still not terribly comfortable for those of us with loud bodies.

To be truthful, I’m sick and tired of this body.  I’m grateful for what it’s done for me, carrying me around my life, into and out of some truly wonderful and outrageous and sometimes horrifying adventures.  I love that it carried me on horseback all over the place, allowed me to throw it down mountains on skiis, glided me through water salt and sweet.  It grew me a baby 32 years ago, and then fed and nurtured that baby, who is now his own human being with his own life.

I feel as if I’m saying goodbye to that nice body, the one that danced and played music night after night after night after dizzy exhausting night.

That body is, for all intents and purposes, gone.  That body, the one that I knew I had because it felt so fucking amazing lifting weights, powering up mountains, inching along rock ledges, is changed for one I can’t ignore, for entirely different reasons.

This new body tingles and buzzes.  Sometimes it bangs on pots and pans, other times it feels like zippers zipping up and down my arms.  Reaching for an object gets me electric shocks.  


My previous body had pain. Lots of pain, most of the time, in fact.  But as long as it still worked, carried me around, worked its way into the asanas I loved, I put up with the pain. As long as there was that confidence that if I kept on putting one foot in front of the other, I’d reach my goal, no matter how distant–the pain served as evidence of my progress.

There have been times when the pain put a stop to my activity.  I’ve had stretches of months at a time when simply getting out of bed took half a day’s energy, and getting back in took the other half.  This is discouraging.  But I’ve always pulled out of those nosedives, got back in the saddle and rode away.

Not this time.  

The bones in my neck are getting worn down because of ligamentous laxity.  I love that term, don’t you?  Say it a few times.  It’s fun!

Actually it’s not fun.  When your ligaments get over-stretched and no longer hold your bones in place, the bones slip around and rub against each other.  The cartilage wears off.  Bones grate against bones.

It’s not quite so awful if it’s one or two bones that are loose, but if you have a whole spine full of them, you have a problem.  I have that problem.

It’s not just my cartilage that is crumbling, either.  My muscles seem to have jumped into the act.  I’m nursing multiple rotator cuff tears, in both shoulders.  I have tendons that are shredding.  Ligaments, too, are becoming frayed.

We know this because of MRI information.  We also know this because my recent hand surgery revealed tissue damage that has been going on for decades, a representation in my wrist of the destruction in my whole body.

Of course now the nerves have come on board.  They buzz, they vibrate, they pinch, they stab.  They ache.

Something in my neck has changed for the worse, so I made an appointment with a local spine surgeon who I’ve seen in the past.  Unfortunately for me, he retired at the end of the year, so I saw his successor: a nice young man, full of algorithms and theory but not much experience.

“When did this start?”  His opener.

“In 1983.”  I felt myself slip away into dissociation.  

“Oh, but this time.  Did it start yesterday?”

Patience, Laura.  It’s not his fault he doesn’t know you.

“I have a genetic defect of collagen structure.”  I gave him a quick rundown of my history of spontaneous dislocations, spinal badness, surgery, injections, etc.  His eyes glazed over.

Fortunately, I collect CDs of all my MRIs, and they were on his computer already.  We aborted the attempt at oral history and just looked at the pictures.

Oh look, he says, you have at least three unstable levels in your neck.

Yes, I nodded (not much of a nod, because I can’t look up because my neck is stuck that way).  And something has very much changed, and that’s why I’m here.

And luckily, when the nitwits at the Cleveland Clinic did the Whole Nervous System 3 hour long MRI looking for MS, they used contrast, which showed the benign tumors that are inhabiting my vertebrae.

Did the New Guy think that hemangiomas (benign tumors made of blood vessels) would be a problem for surgery?

Certainly, he said.  But if you have a collagen problem, that alone might contraindicate surgery.

Yeah, I kind of thought so, I mumbled.

There must have been something on the floor, because we both stared at it for an awkward interval.

Well…he fidgeted with his cuticle…I guess the first thing is to get a new MRI.  Make an appointment to review it with me.

The MRI is in a couple of days.  Then I’ll get the news: something I can live with till the next thing?  Something that’s going to cause further damage unless fixed?

Right.  I’ve already had that opinion.  In fact, I’ve had three separate opinions, from three separate spine centers, that all say the same thing: no surgery, not much life left.

I’m feeling like a box of cereal that’s past its expiration date.  Stale.  Crumbling.

And sooner than later, full of worms.

The Tipping Point: So Long, Able Body

It’s not here yet.  I’m not there yet.  But it’s getting closer.  I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.

That’s what happened to Dad.  It happened over a period of years.  I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes.  But one day, or so it seems, he was frozen in thin air.  His body had just frozen.  He could walk, for a while, with a cane.  His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet.  It was good exercise, I thought.

He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands.  It cost his soul a lot, not to be able to write his memoirs.  (No, he wouldn’t do all the alternative things to physical writing.)

Then one day his legs stopped working.  I think he had a stroke.  He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.

These few words about Dad serve as a preface for what I am about to tell you.

I have been having excruciating pain in my neck, due to arthritic vertebrae.  The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck.  Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself.  I guess that’s why my arms ache and tingle all the time.

Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses.  Who needs pain meds when you’re fucking asleep?

For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale.  It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move.  After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen.  I don’t do opiates like Percocet, because they make me itch.  Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.

So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.

Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease?  Us medical people call the usual course of an illness to be its “natural history.”  I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life.  So I asked her about the natural history of my disease, and she said “Not good.”

“What do you mean, “not good”?

Well there was a point where surgery–

“Surgery?  What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”

Yes, in fact.

“How good is the surgery?  What’s the success rate?”

She shakes her head.  Not good at all, she says.  About like lower back surgery…….which stinks.

But, she says, you might consider it when your hands get too numb to work.

My whole body, including my mind and soul, was numb as I walked out to the parking lot.  “When,” she had said.  Not if.  When.  I kind of thought that’s what’s in store.  My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time.  It’s definitely progressing.

And then we come to my right shoulder.  The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse.  I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.

I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years.  And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work.  I would be in a nursing home until I died.

I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.

As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied.  And so it is, with me, anyway.

I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me.  I had to trade the truck in for an easy-to-drive car.  My hands only hold out for so long at the keyboard before they seize up and I have to stop.  I can’t play my banjo anymore.

This is me playing my 1897 Fairbanks & Coles fretless banjo in 2005:

 

Life is getting less and less attractive to this formerly physically active person.  I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me.  Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.

It’s getting closer.  I have to be careful not to miss the tipping point.