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September – My Diagnostic 9/11

“For me and my family personally, September 11 was a reminder that life is fleeting, impermanent, and uncertain. Therefore, we must make use of every moment and nurture it with affection, tenderness, beauty, creativity, and laughter.”  -Deepak Chopra, M.D.

On September 11, 2001, I sat on my sofa watching The Today Show, in horrified disbelief, as two airplanes flew into The World Trade Center.  Flames engulfed the buildings for moments of dreadful suspension before collapse. . .a dark cloud of destruction rising to obscure visibility.  News anchors gave a valiant effort of trying to keep personal emotion from professional reporting of the carnage — no answers for the massive confusion, destruction, death. . .screams, human and rescue vehicles, combined in shrieks of unified despair.

Soot-covered victims and first responders emerged from the thickening smoke, survivors and heroes.  Including the Pentagon attack and the plane crashed in Pennsylvania, *over 3,000 people were killed, including more than 400 police officers and firefighters.

Twelve years have passed, but 9/11 will always remembered — in memory of those who lost their lives, in honor of our military, first responders, and the resilience of the American people with the rebuilding of the site of the Twin Towers with The National 9/11 Memorial.

In September of 1994, I had yet another diagnostic evaluation to try to diagnosis the elusive progressing symptoms I had been experiencing for four-five years.  The previous months had become a rapid unraveling of physical ability to a frightening uncertainty as to the cause.  Waiting in the neurology waiting room of a large teaching hospital, I was keenly aware of the macabre movements of other patients, various gait aids, and tried to calm my heart of ‘worst-case scenarios’.

My diagnostic neurologist is one of the country’s finest.  After a thorough clinical evaluation, I was given an electromyogram (EMG) and nerve conduction study, both extremely uncomfortable tests, especially with my diagnosis. . .symptom triggers.  (uncontrollable muscle twisting spasm and rigidity).

Memory of the traumatizing diagnosis disclosure come to me in disjointed fragments: the brightness of the room; the glare of the doctor’s coat; heavy, suspended dread.  “I believe you have Stiffman Syndrome.”  With those two friviolous-sounding words, my life was forever altered by the devastation of an incurable autoimmune neurological disorder — a formidable terrorist.  I listened to the doctor through surreal tunnel vision, trying to emerge my sinking thoughts to focus on an escape, a cure, as my life came crashing around me.

Walking out of the office into the waiting room, I saw the neurologically damaged with new eyes.  I was one of them.  We were all victims of a diagnostic terrorist.  With my future unexpectantly torched, the acrid smoke obscured hope as I listened to my heart silently scream in fear.

There isn’t a cure for Stiff Person Syndrome (SPS).  In 1994, a home computer and Internet was six years into the future.  Three NIH studies for SPS hadn’t been conducted yet.  “Maybe” an experimental therapy will help “if” insurance approves.  I was also given the neuro’s personally published article on Sudden Death, (respiratory arrest) a possible prognosis for me.  The experimental therapy improved my quality of life, but did not give the hopeful remission. . .so far, just one episode of a close respiratory arrest, triggered by emotional duress.

The National 9/11 Memorial is a thing of beauty.  As the American people have not forgotten the atrocity of that fateful day, the Memorial is a testament honoring what was with what will be.

Nineteen years have passed, but September is my diagnostic 9/11.  As I crawled out of the physical devastation of what I was, I have never lost who I am.  My memorial is my life.  Rebuilding is a continual work in progress.  I hope to make it beautiful — make use of every moment and nurture it with affection, tenderness, beauty, creativity, and laughter.

Dedicated to the fallen, the rescuers, our military, and fellow Americans in remembering 9/11.  I want to acknowledge those who live with the devastation of debilitating chronic illness, their loved ones, and the caring health professionals who make a difference.

*9/11 Attacks  (from the History channel.)

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