Thursday, August 5, 2010

the summertime exacerbation blues

This may sound a bit strange but my particular MS has always been as vocal as it is sensory...

Before I explain this, I'd like to tell you a story.

About fifteen years ago I was seeing a neurologist at UCLA that I liked very much.
 His name was Dr Louis Rosner.
 One of my favorite things about Dr Rosner was how sensitive he was
 to all the little things, the almost insignificant things
 that doctors refer to as baseline symptoms.
In a nutshell, baseline symptoms are the MS equivalent
 of fingernails on a chalk board
 only they're inside your body...running amok...

Since Dr Rosner knew that I was a writer,
each time I visited him
 he would ask me for new
 and varied descriptions of my baseline symptoms.
  It became a little game between us
 that often lightened the mood of my appointments.

One day Dr Rosner asked me if I would be so kind
 as to join him the following month
 at an informal doctor/teaching noon lunch
 and share some of my most creative descriptions with the other neurologists.
 He would be presenting a paper he was working on
 about the importance of baseline symptoms
and patient care.
 He was so enthusiastic about having me there
 to offer patient input
 in my particularly colourful style
 that I just couldn't refuse...

The day I was supposed to speak with the neurologists arrived all too soon...
Dr Rosner told me I did not need to prepare a speech
that all I had to do was start talking and describing
and the doctors would, of course, ask some questions
and that would be that...
He was so sure that my fresh take on baseline symptoms would
 charm the stethoscopes from around their necks...

 I described to those neurologists exactly
how sometimes my hands, legs and feet began to buzz so intensely
that it felt like someone had knocked over a bee hive
and I'd been invaded
or that it could resonate so deeply and loudly
that one of those hard hat guys drilling in the street
was drilling inside of me

and before I could get to some of my more poetic metaphors
a couple of bad mannered residents began to sarcastically mock me
for using auditory instead of sensory words
to describe my symptoms

"Excuse me," I said, "when you are trying to describe the indescribable
 to someone who has never experienced something...
 you use the words that work! 
You want to be understood,
 not given a prize for knowing the difference
 between auditory and sensory perceptions."

When I saw Dr Rosner later, he assured me that I had been terrific...
He would be presenting his paper at a big neurology conference that summer...
and many of his best examples came from me.
He thanked me for my help...
and I thanked him for caring about all those little things...

Now back to those summertime exacerbation blues of mine...

all summer long my MS, actually, my nerves, sing to me...
they buzz, they hum, they screech and they scream
they are shrill and loud and piercing
but sometimes they feel more like the blues
-mara

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