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.

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24 Comments

  1. I am glad to hear from you but sorry you are in so much agonizing pain. sending gentle hugs to you.

    Reply
  2. I’m so sorry you are going through so much. It sounds horrific. Thank you for having the bravery to share.
    My thoughts are with you

    Reply
  3. laura, please don’t rush into anything, even tho i know this is a horrible way to be. sending you all my best wishes and (((hugs))).

    Reply
    • Thanks, Kat. I’m not going anywhere in a hurry. This new MRI will give me more information, so I can have at least a direction for which to plan. It’s either surgery, or palliation for as long as I can stand it. I’ll know more next week.

      Reply
  4. oh Laura I am so sorry you are having more problems. I hope your new doc can help your neck in some way. I feel so bad hearing what your body is putting you through. I will be praying for you sweetie. Sending you hugs and wishing you comfort.πŸ’Ÿ

    Reply
  5. Dr Laura, my thoughts are with you, I have no words of consolation for there is nothing that I can write that will, take away your pain. I am terribly sorry that life is more than you can tolerate. You have been dealt more misery than anyone should endure. You have made it this far and I believe that you have many years to go. You are still relatively young- that’s my assessment and one never knows what treatment/s lie ahead that could prove beneficial. Prayer and hope are two things to hold dear.

    I know from your writings that you are dedicated to your religion. I hope it can offer some form of consolation and a reprieve from the pain that is engulfing you at this time.

    My body is old at 80 years and I have wanted to throw in the towel many times but eventually I get better and I feel good again if only for a while. I’ve dealt with this for years and today was not good either. My animals keep me here and keep me going.

    Those of us that read your posts feel a kinship even though it is through cyberspace. We love you, dear lady.

    l

    Reply
    • Dear Yvonne, I know you go through it. My dog is why I’m here at all. She keeps me going. I’ll stick around for her, but otherwise I have no reason to stay here just for more years of suffering. My religion is no comfort. I’ve ceased to believe what they tell me. It’s just putting in time now.

      Reply
      • Well for what it’s worth I don’t believe the Bible and there is no merciful God- there is too much pain and suffering, continuous wars, poverty , cruelty, famine and, the list goes on. I pray but I’m not even sure why. I’m so glad that you have your dog. I know she is everything to you.

        Reply
        • Religion has its explanations for that. If I can get it together, I’ll post something, because I’ve been thinking about the ways religion explains apparent inconsistencies between what is taught and what we experience. Just a way of helping people cope with crushing reality, I think. I just spoke at length with a dear friend in Israel, who is very religious, about suffering and whether what we’re taught is “real.” (She doesn’t buy it either.)

          Reply
          • I’ll await your post It will be interesting. Good to know that I’m not the only one that has not been swayed by the Bible. It’s a guide that was written for a period in time and in my opinion, it was written to scare the daylights out of people. There is one good thing that I like and it’s the Ten Commandments. Of course no one can follow all of the rules but in general it’s an overall moral guide. I had better cease my ideas before I start looking real ignorant. πŸ™‚

            Reply
  6. Laura,
    What do I write that can make you feel better?

    May the Guru look after you.

    Love and light

    Reply
  7. I’m horrified by the extent of your pain. Its a form of slow torture. I respect and understand your outlook. I hope I can in some small way give you a brief distraction or comfort while you wait.

    Reply
    • Thank you, dear. I know you understand, and I so appreciate your support. I’ll do the best I can, for as long as I can, for the sake of those “down here.” Much love to you!

      Reply
  8. I’m not “liking” your pain or limited movement, or shortened expected life span. But I get it. Two of my doctors are thinking I have EDS so I get the dislocations/hypermovility frustrations.
    And nerves are assholes, aren’t they? πŸ˜‰

    Reply
  9. I hear you loud and clear
    My body is the trash can of my life

    Reply
  10. Dear lovely Laura
    I read this when you wrote it in my email…it was so difficult to read.
    Even more difficult knowing what to write.
    I will write am so truly sorry…bc I am. I think sometimes it helps people to know that others care and in some way they are not “alone” in this great vast space…
    Reading your pain I can’t fully imagine…
    I’m always sending love….
    xxx CC

    Reply
    • Dear sweet CC, you are so sensitive. It must hurt 😦 but it’s what makes you such a lightning rod for….everything. Thank you so much for your friendship, your kindness, your love. xxx

      Reply
  11. So sorry, Laura, that your suffering is so great. I pray for relief from your pain. Sending you my love.

    Reply

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