One Patient's Positive Perspectives

A sobering reminder...

I once thought I could never be guilty of driving while impaired.  I am a person who does not drink alcohol, so I have always believed that the prospect of being guilty of a criminal offense while driving was impossible.  Recently, while driving in to work, I had a sobering reminder that alcohol is not the only impairment a responsible lupus patient must consider before setting out. 

Unplanned peril from a poor judgment call 

Driving while impaired with my morning lupus fog, and with active symptoms of central nervous system impairment, was a dangerous peril I unwittingly placed myself into a few days ago.  One morning last week, I was rushed to get to work, and made a poor split-second decision to skip sitting down for a few minutes at my piano before leaving.  This proved to be an almost critical mistake, which I should not have made.  I exercised some extremely poor judgment. 

Suddenly, a few minutes later I came within a couple of inches of causing a horrible, deadly accident.  My delayed reactions caused my braking car to skid while burning clouds from my smoking tires filled the freeway behind me.  I immediately felt the depth of my mental impairment, while being overwhelmed by the grace of God that permitted me to (barely) stop my fish tailing vehicle, despite my foggy mind and reflexes. 

I knew at that moment that didn’t belong on the road, and found myself in a potentially fatal situation created by my faulty judgment call.  It was clear that my reflexes and mind were not well connected, and that driving in that condition was extremely dangerous.  Had I tried to play the piano for a few minutes before leaving, I would have sensed my impairment. 

I work in a government law office, and part of our caseload relates to cases arising from physical or mental impairment, usually due to substance abuse.  Usually, we think of alcohol or drugs as the reason for driving while impaired.  As a lupus patient, I need to be very concerned before I get behind the wheel about whether I am impaired due to brain fog and/or central nervous system involvement of my lupus.  This is one of the reasons that I play the piano nearly every morning before I go to work. 

If I can sight read...

Fitness or impairment measured before setting out 

If I can sight-read an un-memorized piece of music, that indicates something very important.  If my mental processes, eye-hand coordination and reflexes are tuned-in enough to work together to play without stumbling over the music, this is an excellent measure whether I am also safe to drive.  Playing a musical instrument is a very complex mental, neurological and physical activity, and is an excellent diagnostic tool to determine if my lupus has impaired one or more of these systems or senses.  It proves clearly whether I can mentally multi-task. 

Occasionally, I sit down to play the piano and realize that lupus is still affecting my abilities more than I realized.  Sometimes these mornings I feel rested, and may not have a lot of physical pain.  So, when I sit down on the piano bench, and begin to use my musical skills I realize quickly whether or not the inner, invisible parts of me are up to par. 

Sometimes seeing, and then playing, the notes becomes a struggle just to “connect the dots.” I find sometimes that I am groping and halting, just trying to find the proper notes in time with the music.  The instant that passes between seeing the note and finding it on the keyboard correctly is sometimes muddied by dense mental fog.  Mental perception and connections are significantly slowed.  Thinking and reacting processes are slowed inside my brain, and at those times I perceive an almost painful sensation, as my mind struggles to process the musical information. 

Mentally, it compares to performing strenuous sustained physical work while challenged by painful joints and muscles.  A part of me wants to stop trying to make it work, to stop pushing myself mentally to the point of near pain, and tempts me just to get up and walk away.  Yet, another part of me compels to keep trying, to continue to push through the fog until I find my way and develop a new path through that darkened place. 

I feel like I am exploring through uncharted territories of my mind to create new paths to idle, undamaged brain tissue.  Finding these places, my efforts then awaken these unused brain cells, and call them newly into action.  This is arduous work, slogging through the difficult bogs of muddy mental places, walking slowing and deliberately as if there were layers of mud on my rain boots, clinging and weighting down my every step. 

Dark clouds blocked the late afternoon light

A childhood journey through a darkened storm 

These mental efforts remind me of one afternoon many years ago when I was a very young girl.  One damp deep winter afternoon when I was about 6 or 7, I was walking home alone from school in the almost dark before early sunset.  In the northern California winter afternoons, the sun began to set as early as 4:00 in the afternoon. 

That day, a torrential rain storm was pummeling the Bay Area, and deep dense clouds were blocking the fading afternoon light.  The sky and school yard ahead of me were filled with near darkness.  As I clung to my umbrella, wearing my raincoat and rubber rain boots, I began my journey from the school building down the muddy dirt path to the far corner of the school yard ahead.  My destination was the gate I knew that was ahead, that opened onto the end of my street, and my warm parents’ home a few blocks beyond. 

As I set out, I remember that I could not see the gate ahead through the driving rain.  With each step, the mud clung heavier and heavier to my boots, and the wind howled against my shivering chest, pushing me back toward the school.  With each step I became wearier and pushed harder and harder, determined not to stop.  I remember the deep isolation and loneliness of that difficult moment.  There was not another person in sight, as I pushed to cross the dark, soggy field. 

Somewhere mid-way through the school yard, I looked back toward the buildings behind me, and could not see them.  Nor could I see the gate ahead.  The only thing I had to guide my direction was the well worn, muddy dirt path at my feet below.  So, that tiny wind battered girl trudged onward.  Pushing against the wind that sought to impede, lifting each foot with determined effort, one after the next, finally she reached the gate. 

I remember sobbing with relief the moment I finally could recognize the shape of that gate ahead.  It was a welcoming sight to a weary little girl, overwhelmed by the forces of nature and her engulfing experience.  That day, she learned a little piece of truth about facing challenges.  It left a potent memory of plodding on with determination and purpose through an overwhelming experience that blinded all view of her destination. 

The feelings of that stormy afternoon sometime rush back as a faint memory when I find myself struggling to navigate through mental fog and impairment.  Like the storm, the fog passes as a consuming and challenging transient experience.  The rain will come again, and the fog will revisit my daily experience.  Just as the fog rolls in every morning to the northern shores of my home state, so the fog of lupus rolls in during the night to cloud and cling close to my mind each morning. 

 

The other side of the lupus fog

The other side of the fog and storm 

Slowly, each day the sun daily breaks through, and the glory of each beautiful day waits ahead.  Even though some California rainy days last from morning until night, and sometimes, a deluge might even span days on end, hope of the return of sunlight still remains for its rain-drenched residents.  The sun always comes out again, just as my lupus fog always eventually clears.  Every muddy, slowly travelled path has a destination at its end. 

That stormy afternoon so long ago, my mother, hot tea and a warm fire place were waiting for me.  Her waiting hug and comfort were a welcoming reward after passing through that dark, drenching afternoon storm. 

So, too, now I push on toward what I believe and know lies each morning on the other side of the lupus fog.  And once again, I am sternly reminded to wait for lupus impairment fog to lift before getting behind the wheel.

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