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The Great Pretender

“Everyone smiles with that invisible gun to their head.” 
Fight Club, Chuck Palahniuk

“We’re actors in our lives, pretendin’ to be who we want people to think we are.”  
~Simone Elkeles

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Half of my life, almost my entire adult life, has been an ongoing theatre of appearing “normal” on the world stage after leaving the comforting familiarity of my dressing room, a.k.a. home.  Stage fright is skillfully hidden under props of preplanning, years of daily rehearsal, carefully timed medication, and a smile for another starring appearance of “Living With Stiff Person Syndrome” – a one person “blockbuster” (word evokes dread, memory), with lifetime impromptu performances to an unknowing audience.  With each uneventful performance, (Academy Award), I give a mental bow to thunderous applause heard only by me, The Great Pretender.

Normalcy by wellness is desired by me.  To be just a regular person, move without preplanned thought, mark time with boredom instead of taking meds, take off the mask of pretense.

As “The Great Pretender,” I am experienced at my charade but sometimes hearing the click of the always loaded syndrome gun sets off an episode…

One Sunday morning at church, I had a minor episode of spasm.  Exacerbating the situation, concerned members enclosed around me.  “Is it her sugar?”  They were kindly advised to give me space as I took an emergency med with the reprieve of the beginning service to give the med and me time to calm.

Amused at the irony now, it was assumed it was a diabetic issue and not the syndrome; although the members knew I had SPS.

As the years of my life have passed swiftly, I look into the mirror with recognition of the current me, but still see the “pre” syndrome Debbie.  I will always miss her.  Her heart and mind will always remain an integral part of me.

Living my life as an imposter, a pretender, I value being seen as normal.  It isn’t just about the stigma or labels associated with illness or disability; heartbreak is personal.  I dislike pity.  Pretense becomes the mask I hide behind.  See me, Debbie, the person with understanding and acceptance. May I introduce you to… The Great Pretender.

Copyright © 2019

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The Great Pretender
I-cant-forget-but-i-can-pretend

#chronicillness
#raredisease
#invisibleillness
#stiffpersonsyndrome

 

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Echoes

Empathy is about finding echoes of another person in yourself.”
~Mohsin HamidMohsin Hamid

Living with Stiff person Syndrome for almost thirty years, I have learned so much about how the syndrome personally affects me while continually work on ways to subdue this invasive lifelong diagnostic sociopath.

As years of medication tweaks, positive life changes, and daily utilizing a lot of my own devised physical rehab (focus on the last eight years), I have been able to maintain an uncertain stability. I still have daily aches, fatigue, and the occasional “gotcha”, but life is doable in an optimistic today.

Not dwelling on future “what ifs”, the past of my life is a relentless reminder of dark places, haunting echoes.  I see, I know…

Going inside the bank, I was in line behind an older Hispanic woman.  Slightly disheveled, she was clutching the line rope with one hand while the other had a cane.  I felt her nervousness at the length of our wait, eyes looking longingly at the counter.

She shuffled to her “next” spot as I watched her gauge the distance from the rope safety to the counter.  My heart ached at so many memories when my SPS created yawning caverns out of a small aisle in consuming terror, resulting in quivering spasms.

It was her turn.  In reluctant dread, she hesitated.  I understood.  I stepped beside her and extended my elbow.  Relief washed over her face into a radiant smile as I escorted her to the teller window.

Outside in my car, I smiled at being able to pay it forward. Echoes of individuals who came to my aid, some recent, when a space was a yawning stomach churn for me replayed in my mind.  I understood.

#chronicillness
#raredisease
#stiffpersonsyndrome

© Debra A. Richardson

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Devil’s Backbone

“But I think we are seeing a resurgence of the graphic ghost story like “The Others,” “Devil’s Backbone” and “The Sixth Sense.” It is a return to more gothic atmospheric ghost storytelling.”  ~Guillermo del Toro

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Devil’s Backbone

I like the opening quotation to this post.  Stiff Person Syndrome will always be a haunting for me.  In my paranormal world of swirling syndrome spectres, I am always aware of the chilling presence following me every second uncertain of when/where/how an apparition will appear.  I try to be a Ghost Buster.

After years of movement creating disabling symptoms of spasm and gut squelching terror, I had reached a ‘stability’ that allowed me to devise my own physical therapy.  I know my body, symptoms, and triggers better than anyone else.  My personalized therapy extended to my mental and emotional health as well.  It is continual daily work to achieve and maintain my hard-earned improvement.

I took a trip to Colorado to visit family three summers ago.  With my daughter packing her baby and gear, I backpacked necessary baby overflow necessities, my diabetic supplies with a death grip on two hiking poles as we trekked up to Devil’s Backbone.  Having my daughter with me was having my own personal SPS navigation system.  She knows my triggers, pausing at any potential threat to gauge my reaction — my support with this challenging endeavor, testing the benefit of my self-designed physical therapy.

While taking in the breathtaking openness of the scenery, my thoughts split, as they always do, into what is in obvious play to an inner stiff mindset.  The winding trail leading to the rugged rock spine was an appropriate visual of the syndrome, aptly named Devil’s Backbone.  My stiff thoughts could hear Charlie Daniels playing the fiddle to Devil Went Down To Georgia as background accompaniment.

As we crested the spiny outcropping, shade cooled while boulders seated us as we snacked, talked, and enjoyed the panoramic view through the arch.  I shared a beautiful outing with my daughter and grandchild without syndrome drama, except for The Others playing in my mind.

I felt grateful, alive … normal.

 

 


© Debra A. Richardson

#StiffPersonSyndrome #raredisease #therapy #outdoors

Beauty Of A Woman

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“There is in every true woman’s heart, a spark of heavenly fire, which lies dormant in the broad daylight of prosperity, but which kindles up and beams and blazes in the dark hour of adversity.”  ~Washington Irving

The best cosmetic in the world is an active mind that is always finding something new. ~Mary Meek Atkeson

A disabling diagnosis stripped me of thinking of myself as a beautiful/total woman.  Social definitions as youth, sexuality (which is a mystique without definition), & ability can be admirable attributes, but not what defines being a woman or beautiful.

Condescending comments along with my own syndrome insecurities battered my sense of feeling like a woman.  My housebound era did not encourage makeup or dressing up, sometimes too much to tackle.  During the last few years, I became reacquainted with the wonderful deliciousness of my womanhood.

In midlife, I discovered what defines a beautiful woman.  Strength of character, compassion, wit, a sense of humor, with confidence, are admired and acknowledged by many.  I am learning that sometimes I do not lose something, I let go.

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The Beauty Of A Woman

The beauty of a woman isn’t in the clothes she wears,
The figure that she carries, or the way she combs her hair.
The beauty of a woman must be seen from in her eyes;
Because that’s the doorway to her heart, the place where love resides.

The beauty of a woman isn’t in a facial mole;
But true beauty in a woman, is reflected by her soul.
It’s the caring that she cares to give, the passion that she shows;
And the beauty of a woman with passing years only grows.

Authorship is variously attributed to the following authors:
Maya Angelou, Ralph Fenger, Audrey Hepburn & Sam Levenson

“One is not born a woman, one becomes one.” ~Simone DeBeauvoir

“Outward beauty is not enough; to be attractive a woman must use words, wit, playfulness, sweet-talk, and laughter to transcend the gifts of Nature” ~Petronius

music-notes-clipart-yiog7XRBTjpeg Always A Woman

© Debra A. Richardson

#stiffpersonsyndrome #beauty #raredisease #selfworth

Lost Time – Finding Me

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Broken. Living years struggling with a defective body, my ‘normal’ life imploded around me, and finally, a broken spirit.  Darkness enveloped my being with an oppressive heaviness — defeat.  Emotionally, I collapsed under the weight.

Some small remaining spark of survival remained, igniting a will to live after years of yielding to apathetic depression.  I mattered.  I was alive.  I wanted a life.

After my Stiff Person Syndrome diagnosis, I immersed myself into marriage, my family, and others.  All of that was good for quite some time, but gradually through the years, I was living only for and through others.  I lost me and lost relevance.  It was time to nourish Debbie.

For many isolating years, I lived a virtual social life through my computer.  My children have always been my strongest support/reason; but they grew into their own adult lives.  I wanted, needed, to have ‘my’ life.  Finding a simple but nice apartment, I moved in by myself — my first solo pad in my entire life.  Well…not quite.  My diagnosis moved in with me.

Choosing to stay in my current locale, I had no one except my doctors.  Knowledgeable medical care was the lure that first drew me here.  Doctors familiar with Stiff Person Syndrome are as scarce as the disorder.  It is vital to my life to have good physicians.

My cozy little apartment I named, “My Healing Place.”  Getting involved in a Christian support group, I poured my soul in my journal handbook as I lay on the floor and sobbed years of pain-filled tears — a long overdue purging.

With my quirky creativity, I figured out ways to maneuver around my necessary places to be, asking for needed help when necessary, and dealt with syndrome episodes.  As a middle-age solo operative, this dumped on independence became empowering with achievement.

I began toting a weighted gym bag with one hand and hiking pole in another to access a gym to work on balance, strength, and flexibility, ‘in spite of’ curious stares.  SPS is always a formidable improv setting, creating some…interesting? situations.  Through the years (Yes, years.), my devised physical therapy has paid off.  However, though subdued, the syndrome still lurks in the shadows with surprise cameo appearances.

I loved the peaceful solitude of that little apartment.  Ate when I wanted, what I wanted, had control of the remote, only me to worry about.  Tranquility eased my physical symptoms.  I know the calm of my healing place helped me close the door on the pain/grief of so many losses in my life.  I looked toward my future with anticipation.

Joining in social settings, I enjoyed conversation with real people.  As time went on, I reconnected with old passions: outdoors, parks, picnics, camping and volunteering while discovering new loves: theatre, art, museums, and public speaking.  Living in isolation for so many years, I embrace the miracle and beauty of the simplest things while daring unknowns.  I have said, “Life is a buffet.  I want to sample many things.”

For two years, that apartment was my home.  One of my life mottos is “living forward.”  Like a child at Christmas, I am so busy opening up life’s gifts; I have taken a hiatus from my writing and syndrome outreach.  I am feeling the tug to become involved again, but not to the extent I was before.  I allowed it to become consuming.  I live with Stiff Person Syndrome, not for it.  Life is a challenge, but full, fun, and exciting.

I am Debbie.  Taking chances.  Making changes. Breaking Away.

© Debra A. Richardson

#raredisease #stiffpersonsyndrome #chronicillness #coping #liveforward

5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Guest Blogger on NORD – Rare Disease Day

Debra-Richardson

 STIFF PERSON SYNDROME: A FIGHT TO THE FINISH LINE
February 14, 2013

I already view tomorrow as a triumph, crossing the finish line will mean many things to me.  Whatever happens, it is such a priviledge to reach a point in my 20+ years of daily living with the challenges of SPS to attempt something I thought was forever lost.  Whoever reads this, whatever life throws at you, the future is always speculation.  Never lose hope, heart, or the desire to try.

With love,

Debbie

Dedicated to many who have left prints on my heart & to God, my “refuge & strength.”

Febrary 28, 2013

Febrary 28, 2013