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Two Days Before the 5K

“We must let go of the life we have planned, so as to accept the one that is waiting for us.”
~Joseph Campbell

Thursday was my last practice run. Checking the clock, 4:00 gave me ample time to drive to my outdoor training ground and back home before dark.  My heart sank as I did my routine blood check before leaving — 54 and dropping.   Turning off my insulin pump, I ate a snack, but needed additional sugar for the carb expenditure of exercise.

Topping off my tank with a protein bar, two Reese cups, and two boxes of apple juice, I did not have time to allow my food to settle before the sun set.  Starting with a brisk walk escalating into my geriatric trot, the contents of my stomach were a nauseating reminder.  “In spite of” the hypoglycemic episode, I finished in an impressive time for me with a glucose reading of 115.

Today was busyness.  A lengthy errand involved a trip into the city and dealing with the mayhem of getting my race packet.  Fate smiled on me with a close parking spot.  The Donna Deegan Marathon for Breast Cancer is a national event.  The Convention Center was jammed with various aisles and booths, colors, people, and noise everywhere — a continual movement of pastel confetti to my syndrome perception.

There will be over 1,000 runners in the 5K, more participants in the marathon and half-marathon.  Excitement and camaraderie reverberated throughout the building… Every person, a story.  How appropriate this race is for me, for Stiff Person Syndrome, paraneoplastic syndromes, Rare Disease Day.

I wavered between angst and excitement all during the day, my neurons subtly firing with medicated suppressed “snap, crackle, and pop.” Several times I practiced a deep inhale, slow exhale to calm my racing heart.  With the familiar security of my jogging stroller navigating me through the crowd, it gave me a sense of calming confidence.

Before SPS, the racing “if” always concerned time.  Since SPS, the big “if” has become if I will be able to do it.   Tomorrow morning will involve planning the timing of my medication, food intake, packing my medical supplies, and anticipating having fun.

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

A Moment

“Nothing valuable can be lost by taking time.” ~Abraham Lincoln

Before my Stiff Person Syndrome diagnosis, I savored life as a super-sized–fries with that please–get it to go bagged rush.  Hope they remembered ketchup; did I ask?  I enjoyed life from the fast lane of juggling work, children, home with bites of vacation, make time for a book, stolen minutes of solitude.  The future beckoned with slower paced promise, “the” time to enjoy life more than I already did.

Diagnosis was a brick wall crash splintering my windshield view of all the envisioned good times, crumpling my hectic now…gone in a moment.  I could only look with grief through the intact rear view window of “what was.”  Crawling from my life’s wreckage, busyness became surviving a day of symptoms, escalating doctor appointments, a future destiny of joy became deflated tires going nowhere.

It would be so easy to stay in a Comfort Inn in defeated complacency.  I still had a little Daytona in my engine.  I began to see possibility in overlooked slowtrotting, harnessed my wagon to a bony nag and began my rut-jarring life journey in unchartered territory.  I did not expect the wonders of seeing the world through a slower pace of disabled challenge.

Time.  What I have learned–an hour is an hour, frenzied sprint or savored stroll.  A second is an eternity when twisted in painful spasm or a wonder when looking at a twinkling summer sky.  My biggest regret?  Rushing through life before my diagnosis and letting all the possibilities of a moment slip through my fingers because I did not take the time.

This summer I was traveling along an interstate.  A road sign advertised “scenic overlook” ahead.  Years of speeding by numerous scenic overlooks convicted me.  I pulled over.  I grabbed my camera, hiking pole, & surrogate wheeled backpack, “Rocky.”  I managed the slight downward graveled incline and took a moment to enjoy the view of the scenic picture heading this post.

A moment.

To realize the value of ONE YEAR, ask a student who has failed a grade.
To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.
To realize the value of ONE WEEK, ask an editor of a weekly newspaper.
To realize the value of ONE DAY, ask a daily wage labourer who has kids to feed.
To realize the value of ONE HOUR, ask the bride who is waiting to meet her groom.
To realize the value of ONE MINUTE, ask a person who has missed the train.
To realize the value of ONE SECOND, ask a person who has avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who has won a silver medal in the Olympics.

~Unknown

Copyright © 2012

Stroke Of Midnight

Cinderella: Why, it’s like a dream. A wonderful dream come true.
Fairy Godmother: Yes, my child, but like all dreams, well, I’m afraid this can’t last forever. You’ll have only ’til midnight, and then…
Cinderella: Midnight? Oh, thank you.
Fairy Godmother: Oh, now, now, now, now, now, just a minute. You must understand, my dear: On the stroke of twelve, the spell will be broken, and everything will be as it was before.

Since my Stiff Person diagnosis in 1994, it has taken years for medication, immunosuppressant therapy, and life adjustments to achieve a fragile ‘stability.’ The early years of an inching painful shuffle while contorted in relentless spasm have eased into a relative comfort maneuvering within the familiar security of home, interrupted with occasional symptom reminders.

Part of my life adjustment strategies have been planning my ‘out of home’ activities to coincide with medication peaks–an estimated 3 hours of seemingly unhindered normalcy barring any unexpected SPS cameo appearances. My hiking pole does not denote disability like a cane. Pulling a backpack on wheels gives me an assumed perception of walker security while carrying miscellaneous items, freeing my overdrive nervous system from multitasking the simplicity of just entering a public building.

Three precious hours. If planned right, an activity may overlap times of medication dosage, giving me some extra oomph or a brief extension of pharmaceutical magic.

As always, medication peaks decline at the clanging stroke of midnight. My coach turns back into a pumpkin, horses into mice, gown into rags–Stifferella once again.

Laying in syndrome cinders, I bask in the glowing memory of the ball and I dream. My Prince Charming is a cure, riding in on a white steed with a glass slipper custom-fitted for me. We ride off at the stroke of midnight, no longer a clamoring end to medication magic but ringing in a new day, a new life.

Copyright © 2012

Lessons From Josey Wales

I watched Josey Wales the other night. From my SPS perspective, I vividly remember the date my normal life was violently destroyed by total Stiff Person assault. With diagnosis, I buried my former life in a daze of disbelief and grief, like Josey buried his slaughtered wife and son.

In a daily fight for some kind of life, I am an SPS outlaw.  I can relate to being hunted down, ducking danger, and waging defensive counterattacks while continually planning survival strategies, yearning for my former peaceful normalcy.

With a satirical parallel to my life with SPS, some of Josey’s quotations had significant lessons in coping as a chronic illness fugitive.

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Josey Wales: Now remember, when things look bad and it looks like you’re not gonna make it, then you gotta get mean. I mean plumb, mad-dog mean. ‘Cause if you lose your head and you give up then you neither live nor win. That’s just the way it is.

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Josey Wales: Dyin’ ain’t much of a livin’, boy.

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Carpetbagger: Your young friend could use some help.
[holds up a bottle of patent medicine]
Carpetbagger: This is it… one dollar a bottle. It works wonders on wounds.
Josey Wales: Works wonders on just about everything, eh?
Carpetbagger: It can do most anything.
Josey Wales: [spits tobacco juice on the carpetbagger’s coat] How is it with stains?

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Quote #1 – Attitude. “If you give up or lose your head you neither live nor win.” I need to focus, think with my mind not my emotions, & stay determined because “that is just the way it is!” 🙂

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Quote #2 – Perspective. The only guarantee life equally gives everyone is an unknown day of death. Fate dealt me a bum hand, but I choose to stay in the game. (Bluff?) Life is still a gift. To live each day like I am dying “ain’t much of a livin’.”

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Quote #3 – Humor & ‘carpetbaggers.’ Humor is vital to my well-being. I have a dark sense of humor about SPS that leaves some scratching their heads. Laughter diffuses the negative SPS grip on my life.

Carpetbaggers–opportunists who have a ‘miracle’ cure, whatever it may be? Really? I went to one of these miracle docs & deliberately messed with him a little. He became very angry at being exposed. How well do your pricey wonder bottles work on BS stains?

If only SPS would make peace with me like Fletcher did with Josey–just ride off to Mexico and quit stalking me.  Until then, don’t lose my head or give up.

The other evening, a body-jerking spasm gripped me in an unexpected assault. I fell against the patio wall, dropping some groceries, my hiking pole, but avoiding a tangled fall in my butterfly bush.  Shaken, I managed to regroup, leaning against the entryway as I shuffled the few remaining steps to the front door. Mentally I heard an appreciative chuckle whisper “whupped ’em again, Debbie”

Spitting dry fear out of my mouth,  I acknowledged with “reckon so.”

Copyright © 2012

The following movie trailer gives a brief idea of Josey Wales. While Josey was motivated by revenge, I am motivated by living.

Throwing Rocks

December 30, 2011

“Oh the pain, the pain.” Dr. Smith
Lost In Space (1965-1968)

How to describe triggers for my symptom flares for SPS, (Stiff Person Syndrome). SPS is as sensitive to everything/anything as an anemic first-day menstruating female vampire, after a month-long starvation diet, during a full moon on crack–craving blood–mine!

This week, my SPS trigger was weather. Nothing drastic, just a slight drop in temperature and my body rebelled in symptomatic pain. Not quite the sharp stabbing kind, but the continual throb of an at the barely endurable ache of my back muscles, neck, and shoulder joints. Movement was more labored, but was a doable compared to the continual water drip torture type throbbing.

Lounged in my pajamas for the day, laid on my warm electric blanket, moved to the recliner, & tossed Aleve like breath mints. My thoughts and prayers went to those whose experiences were relentless acute pain without relief from prescription pain meds, feeling some gratitude with my temporary discomfort–I hoped.

I had two rough days, a day of letting up, and today is a residual of earlier in the week. I am grateful.

Recently I watched Forrest Gump again. The scene where Forrest and Jenny are married, holding hands and walking comes to mind. In looking at the ugliness of her childhood home, memories of the abuse she endured there manifest in anger as she picks up rocks and repeatedly throws them at the house to collapse in tears on the dirt path in emotional pain.

My house of abuse would be SPS, ugly, dilapidated, the destruction of my physical health. At times I get angry; I cry; and I cope. I throw meds down my throat, as prescribed, in an effort to subdue SPS symptoms. As with Jenny, throwing rocks is just a temporary solution. Daily I work on coping, but there are days…

“I guess sometime there just aren’t enough rocks.” ~Forrest Gump

Copyright © 2011

Who Am I?

“I am a flower quickly fading, here today and gone tomorrow, a wave tossed in the ocean, a vapor in the wind.” ~Casting Crowns

This is one of my favorite songs and defines the most important aspect of the many nuances that define me. I am His.

From A Distance

August 8, 2011


“Distance not only gives nostalgia, but perspective, and maybe objectivity.”
~Robert Morgan

On an impulse, I slipped my camera from my purse and took some photos on my flight’s ascent. Many thoughts twirled through my mind–the ever present angst of traveling alone with my invisible syndrome terrorist, those I was leaving behind, my destination.

I became philosophical viewing the distant horizon from my sitting on the clouds vantage. With the clarity of altitude, the mysterious beyond lost the secrecy of my limited ground level view. I could see the hidden mountain range rising behind the rugged terrain of Mt. Garfield. The rough sandy erosion took on an artistic design.

Roads became winding ribbons with visible destinations, not just obscure roamings. From a distance, pot holes, rough terrain, and detours did not exist; though I knew they were there. Fields had distinct boundaries, rows planted in uniform formation.

From a distance, altitude made sense of ground level disorder. I thought about me, my life, my future. Sometimes I allow the uncertainty of circumstances to cloud the vision of my horizon. I get lost, turned around, or sidetracked. Maybe if I can keep my attitude at a higher altitude, I can maintain a clearer focus during those confusing times. Take a step back and look up–from an emotional distance.

Copyright © 2011