November 9, 2007

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                                        Remembering

  
  

    I wrote the post below two years ago this month; I am reposting it this morning because it is still as fresh as anything could be.  There are a few moments in our lives which help to define the path before us; this moment below was one of those for me.

  
  

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   A Malformation, a small boy and a gift.

  
  

  (written November, 2005)

  
  

  (Malformation: deformity: an affliction in which some part of the body is misshapen or malformed, something abnormal or anomalous)

  
  

          Imagine looking at the word “THE” and not comprehending it.

  
  

         Picture yourself attempting to read the word “THE” and not recognizing it.

  
  

         What if you had to sound it out, “T-h-e” and it still failed you.

  
  

  This would suck. 

  
  

   And it did; as happened to me 3 years ago last month.

  
  

     We were living outside of Flagstaff, Arizona at the time and drove into town to vote.  It was Nov 5th, election day.  I heard on the radio that there would be a booksale in Sedona that morning and decided to drive down. 

  
  

  I remember my son then; three years old and wearing his Pooh outfit with a hood, and ears.  And he was so small, so tiny you could blow him away. 

  
  

  I drove down and had a wonderful time at the book sale.  I rarely had time alone and was enjoying the relaxing drive.  It was lovely.

  
  

  And then it was not.

  
  

  As I was winding up this steep mountain pass I started to feel a strange numbness in my face, my arm, my leg, my fingers.  Things started to blur and I pulled the car over to the thin edge.

  
  

  I was on the thin edge.

  
  

  Things began to swirl and I thought, “I am going to die”

  
  

  “Oh my god, I am going to die”

  
  

  

  
  

  And I tried to stumble out of the car and thought I might fall over the edge and so I stayed inside. I knew I had to keep moving or I would die there, on the side of the road.  And so I kept on driving. And stopping. And dying.

  
  

  All I could think about was my son.  How beautiful he was, and how small. And how desperately we needed one another.  And how I might not say goodbye to him.  And I thought, ”here is the part where my life is flashing before my eyes and it is all him”.   And this is true.

  
  

  And I drove 20 miles in about an hour. I made it to the hospital and stumbled in and slurred my words as I told them about the dying and my head and how my heart was spilling out and my side was numb and I remember now that I staggered as my right leg was numb.  I was numb. And they kept me for hours and I started to clear.  And my heart seemed fine and it was. And they said, “you just need rest and you should have someone take you home, your doctor will see you tomorrow”.  So I went home and slept a dark and restless sleep and woke to a headache that has never fully left me. 

  
  

  I saw my doctor the next day and staggered slightly and slurred a bit and he said, “we really should look at your brain”.  And they did.

  
  

  This is what they saw:

  
  

  

  
  

  A Chiari Malformation.  

  
  

  This malformation is the extension of the cerebellar tonsils into the upper spinal canal. The brain stem and fourth ventricle remain within the skull in their normal position as does the remainder of the cerebellum. Because of the downward displacement of the tonsils there is too much tissue in the upper cervical spinal canal.

  
  

  
  

  Clinical Details: A variety of symptoms are reported in the literature, including the following:
  

  
  

  
  
  • Suboccipital headaches
    
    
    
  • Ocular symptoms, including retro-orbital pain, visual disturbances, photophobia, and diplopia
    
    
    
  • Otoneurologic symptoms, including dizziness, vertigo, hearing disturbances, oscillopsia, nystagmus, and synkinesis
    
    
    
  • Hindbrain compression symptoms, including weakness, paresthesia, ataxia, cranial nerve palsies, dysphagia, dysphasia, palpitations, syncope, apnea, and sudden death
    
    
    
  • Syringomyelia symptoms, including central cord syndrome, impaired sensation, impaired motor control, gait disturbance, torticollis, bowel and/or bladder symptoms, neuropathic joints, trophic phenomena, and pain
    
    
    
  • Spinal cord dysfunction, which is present in as many as 94% of patients with syringomyelia and 66% without syringomyelia

  
  

  My brain was slipping into my spinal cord.

  
  

  I cried for nearly two months.  I underwent test after test and waited.  I stumbled about and spoke to almost no-one.  When I tried to speak, words came out garbled.  Reading was difficult.  My head pounded and ached constantly.  I saw a neurosurgeon.  We discussed surgery. He performed more and more tests.

  
  

  And one day I went in to see him and he said.  You don’t have this. You. Do. Not. Have.This. 

  
  

  I did not have this.

  
  

  but I had something.  I had headaches and walked in a way that suggested I drank frequently.  My mind was dull.  Limp. Dry.

  
  

  And so they tested for M.S. and said I probably did not have that, either.  And then I said I was done.  I was done being the medical mystery woman and wanted to get back to living MY life, thank you very much.  And so I did.

  
  

  And I decided to try weekly massage and foot reflexology and aromatherapy and supplements for brain health.  And I am better.  I am not perfect but I am better.  I am not quick but I am faster every day.

  
  

  And the mystery remains but sometimes that is just the way life is. 

  
  

  But mostly, I get to be with my son. And now my daughter, as well. And this is the gift.  To have your OWN life.  To know how precious and tenuous it is and still hold on to it with a fierce and beautiful love.

  
  

  This is the gift.

  
  

   

  
  

   

  • 8:48 am
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