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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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Touch Me

“A woman’s heart is a deep ocean of secrets.” ~Gloria Stuart

“I am middle-aged, chronically-ill, and disabled.  I am also a woman, with a woman’s heart.  I would like to share a short poem I wrote a few years ago.  First love? Lost love? Current love? Future love?  A combination of all? …an ocean of deep secrets.

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Touch Me

Touch my mind.
Share my thoughts.
Enter my dreams.
Know me.

Touch my soul.
Share my essence.
Enter my being.
Understand me.

Touch my heart.
Share my offering.
Enter my life.
Love me.

Take my breath.
Touch me.

Copyright © Debra A. Richardson

Camping – 100% Chance of Rain

December 19, 2011


“It always rains on tents. Rainstorms will travel thousands of miles, against prevailing winds for the opportunity to rain on a tent.” ~Dave Barry

In October, a girlfriend and I decided to break from the normal shopping, lunch, and movie outings to go camping. The distant rumbling of a storm began with our deviation from the mall sale racks to Sports Academy for fire starters. It poured rain that day.

Perfect planning–from meals, (homemade chili), gear, her trunk filled with $30.00 worth of firewood, to emergency rolls of toilet paper. Thinking of everything, we staged our two-day supplies in her dining room the day before, leaving wiggle room around her table.

After our successful tent-raising, we unloaded our cooler, dry goods tote, and lanterns onto the picnic table. Salivating over the evening’s dinner of chili & s’mores, the first drops of rain started to fall in defiance to the clear weather forecast.

During a steady gentle rain, we started a fire. Wet drops ran down the hood of my raincoat while I licked oozing melted marshmallow and chocolate from the rim of my squished graham crackers. Looking at my girlfriend, I started laughing at the chocolate dripping from her lips. The humor of the situation took hold of me as I said to her, “We have redefined desperation…two middle-aged women in the soaking rain for a chocolate fix.”

Marauding racoons pried the lid off of our dry goods tote twice, swiping our treasured cinnamon coffee cake among other white flour treasures…gluten-holics, not healthy. My friend had a leaking air mattress, nocturnal bathroom breaks, soggy paper towels, & a resistant fire start on the dry second night were a few of the minor and humorous challenges of our outdoor adventure.

Stiff Person went with me along with diabetes as always. My hiking pole helped me navigate gnarled tree roots along the ground, perception and obstacle triggers. Marauding symptoms stayed hidden, leaving the lid on my well-being tote fastened, contents undisturbed. I changed my insulin pump plumbing to fresh air and sunlight, disinfecting with antibacterial gel.

It was a great time–nature, food, quiet, friendship, and we burned the entire trunk of firewood. Though prepared, we did not need our emergency toilet paper.

“In spite of”…Life is still about moments like this.

“Night, the beloved. Night, when words fade and things come alive. When the destructive analysis of day is done, and all that is truly important becomes whole and sound again. When man reassembles his fragmentary self and grows with the calm of a tree.”
~Antoine de Saint-Exupéry

Copyright © 2011