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A Special Lunch

“To know someone here or there with whom you can feel there is understanding in spite of distances or thoughts expressed. That can make life a garden.” ~Goethe

An extremely rare diagnosis of Stiff Person Syndrome (SPS) also comes with loneliness and isolation . . . a never-ending need to explain with only a glimmer of hope for understanding.  My first communication with another person with SPS was via an Internet support group in 2000, six years after my diagnosis.  Euphoria filled the empty void in my life to have an outlet of mutual understanding.  In the following years, I have personally met 24 or 25 individuals with SPS.  While the Internet can be a wonderful communication tool, I still prefer “real life” to virtual.

Jennifer Trednick & I met on Rare Disease Day as participants for the awareness event in our area.  It was coincidence that we both have Stiff Person Syndrome.  Jennifer told me about Kathi Rose, another lady with SPS, suggesting we all meet for lunch.  After some email tag and schedule shuffling, we had a date, place, and time.  Jennifer, Kathi, and I met a few weeks ago — lunch at an upscale Italian restaurant, located in an Emerald City shopping center.  Instant rapport.  Both ladies are intelligent, optimistic, fun, and full of life.  We share the desire to live forward, know the ugly realities, but embrace the possibility of each day.

Over lunch, we shared diagnostic stories, similar symptoms, differing symptoms, physicians, movement issues, off days, good days, and strategies.  Considering the gravity of SPS topics, our animated conversation could have been on the latest fashions, shoe sale, or hair salons to onlooking patrons.  Dialogue was void of self-pity, negativity, or victimization.  Talking with two women who genuinely understood was liberating, validating, and cathartic for me . . . a good time!

In sharing medications, Jennifer pulled out a sheet of paper to take notes on a certain med — similar to scribbling down the ingredients of a recipe — this one for a batch of unhindered movement.  We shared thoughts on coping.  Physically, we all jump through medication hoops and push personal limits, but yield to the flashing SPS stop sign.  Though emotionally painful, cutting toxic people and situations are necessary for health.  Limited ability is on a timer.  Drama, if a choice, gets taken to the curb.  Laughter, positive people, goals, and “doing” are as necessary as medication.

We learned the general personal details of one another’s lives while validating and learning from each other about the cruel syndrome we share — “the tie that binds.”  (Figuratively and literally.)  Shared female laughter and girl-talk made a few appearances into our lunch talk.

Jennifer and I are both insulin-dependent diabetics with insulin pumps.  If I remember correctly, Kathi is borderline.  Diabetes was another topic of conversation.  Sharing included a show-and-tell of one another’s rigid back.

We had our picture taken outside of the restaurant, normal-looking ladies having lunch.  I greatly enjoyed meeting Jennifer and Kathy, two amazing ladies.  When our busy lives align, we hope to get together again.  It was a special lunch.

 

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

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.

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

Second Base–Rounding Third

March 12, 2011

“Progress always involves risks. You can’t steal second base and keep your foot on first.” ~Frederick B. Wilcox

I always viewed baseball as the least invasive contact sport, until I compared it to living with Stiff Person Syndrome. The opportunity to score is only when you leave the safety of the dugout–alone–just you, the pitcher, and the ability to crack a trick pitch to run for the safety of first base. A beginning.

I made a feeble attempt to leave confining dugout safety a few years ago. SPS fear and insecurity had me back in the dugout, with a different team, and still a bench- warmer. “Batter up!” Taking another chance at risk, I picked up a heavy bat, tapped the packed sand from my cleats, and looked the pitcher in the eye.

Hit in the side by a fast ball I could not duck, I hobbled to first base, but I was in position to score! Baseball involves understanding the rules, looking for opportunities, and stealing the safety of a base while sliding to avoid being out.

Catching my breath from the hard hit landing me on first base, I welcomed the opportunity to score. Alone on the field with nine players focused on taking me down, (SPS symptoms), the glare of the lights, and yelling crowd, (boos & cheers), were distractions interrupting my strategy to steal. Just breathe and focus.

My recent neuro visit was an obvious uplift for him regarding my progress–going over my stats. I have been going to the gym 3 times a week, gait aid in hand, but doing light weight training and elliptical workouts during medication peaks. Outside walking with my two hiking poles on off days is agoraphobia training. (I was stuck outside of the library last week, but a kind stranger walked me to my car.) I mentor a child and have developed some friendships and a social life topside of the SPS underworld. I still do some SPS advocacy, but within a healthy balance. Third base goals are in my sight.

Dusting off my knees from my brutal second base slide, I watch the ongoing game with renewing confidence–waiting for my third base opening. I am already contemplating home and another round at bat. My lunch as a mentor this week was appropriately the baseball favorite–an American hot dog.

“Never let the fear of striking out get in your way.” ~Babe Ruth

Copyright © 2011

Here Comes The Sun

March 4, 2011

“Those who bring sunshine to the lives of others cannot keep it from themselves.” ~James Matthew Barrie

I live with chronic illness. Anyone living with a chronic condition knows the physical discomfort, limitations, and emotional expense it takes every single day. If I let it go unchecked, I drown in a self-absorbed preoccupation with the popular trio of me, myself, and I. It is easy to see just inside your own box and become oblivious to the pain of others. One of the best things I do for myself is to give to others. How? What? Why?

My heart is unaffected. I can love, share understanding, listen. I have been in public and see someone who is obviously having a bad day. A genuine smile and kind word go a long way to brighten their day and mine.

I turn off my SPS saga and listen to the problems/worries/fears of others. In listening and offering compassion, advice, and friendship to one in need gives me a boost of appreciation for the good things in my life. I rediscover my worth as a person who can give, not just take.

A member of my sunday school class had lost a loved one. I signed up to take a meal. A bucket of chicken and a couple of sides can go a long way to let a family know you care and ease things for them during a rough time of grief.

My church offers mentoring programs for children: spending time with a special needs child, reading, or planning class parties.

Nursing homes welcome volunteers to visit with the residents, just talk. The residents love it and the time I did that, I was richly rewarded with love and a firsthand account of historical events. Fascinating.

It only takes a caring heart and time to chase away the blues. Here comes the sun!

Copyright © 2011

Where Do I Go?

September 20, 2010

“It is only when we silent the blaring sounds of our daily existence that we can finally hear the whispers of truth that life reveals to us, as it stands knocking on the doorsteps of our hearts.” ~K.T. Jong

I am so angry and furious…with me. SPS is a fence that creates a physical boundary. I make promises to myself about moving forward, but find myself running around in my enclosure yapping without purpose to the world outside of the fence. It is so easy to drown in the comfort of familiarity, life’s roles of wife, mother, child, or patient.

I have been relatively quiet lately, pondering my life (again), and coming to the conclusion I have neglected me immersed in my roles, misguided sense of duty, and just plain laziness.

I have been going to a gym for a few months, dusting off some old sneakers while I creak, groan, and sweat in pathetic moves, but in a jubilant triumph of “doing.” It feels good. 😉 Now, to explore the world outside of the comfort of family and home. It is a course I keep taking over and over again…guts and fortitude.

I am tired of being a medical chart number, known by the formal “Debra” on my birth certificate instead of the friendly “Deb” or “Debbie,” my identity before SPS. It is time to silence my daily yapping at the outside world and listen to the whisperings of my heart. I may find a gate. 😉

Copyright © 2010