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
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#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

Behind The Smile – Invisible Illness Awareness



30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:  Stiff Person Syndrome & insulin-dependent diabetes.

2. I was diagnosed with it in the year:  Stiff Person Syndrome (SPS) in 1994, diabetes in 1989.

3. But I had symptoms since:  SPS symtoms began in 1989 or 1990.  It can take years to get an accurate diagnosis.

4. The biggest adjustment I’ve had to make is:  saying goodbye to my former life, the person I was before.  Learning my identity is who I am, not what I do.  Micromanaging every day with what needs to be done, energy level, severity of symptoms, with medication, timing, and lots of preplanning.

5. Most people assume:  A smile & positive outlook mean everything is okay.  “Coming to terms” with a life-altering diagnosis is not an acceptance conclusion … but a daily coping struggle.

6. The hardest part about mornings are:  wondering/waiting to see what kind of day it will be & waiting for medication to kick in.

7. My favorite medical TV show is:  I do not watch medical television.  I have a starring role in a reality series, yet to be cancelled, though I plead with the producer.

8. A gadget I couldn’t live without is: my insulin pump, glucometer, & laptop.  Oh, & phone.  That was before diagnosis too! 😉

9. The hardest part about nights are:  physical comfort, keeping my fatigued body awake past 9, & being gentle with myself over morning intentions left undone.  Surrendering my ever-present worries to God.

10. Each day I take __ pills & vitamins. (No comments, please)  Varies between 20-25, which does not include other treatments/procedures.

11. Regarding alternative treatments I: exercise, use supplements prescribed by my physicians, & take a needed hot soak or sleep on top of an electric blanket for muscle aches.  I enjoy peaceful home surroundings — music, scented candles, fountains, solitude.

12. If I had to choose between an invisible illness or visible I would choose:  invisible.  Though greatly misunderstood with “presumed normalcy”, it is nice to pretend to be normal, often to avoid not-in-the-mood explanations or social discomfort/overconcern directed toward me.  (Swarmed by a caring group with an unexpected mild spasmodic episode in church.)

13. Regarding working and career:  Making a life with physical limitations & challenges is work.  Enjoying life is a career. 😉

14. People would be surprised to know:  Even though I have had SPS for over two decades, coping does not get easier with time.  Life remains tough; I still grieve; & alone, I cry.

15. The hardest thing to accept about my new reality has been:  the impact on those I love, knowing there isn’t a cure, & the grim reality of possible future progression.  Treatment & coping are daily and for life.

16. Something I never thought I could do with my illness that I did was:  raise my youngest child, have a positive impact on others, & run a 5K with a weighted jogging stroller in my mid-fifties.

17. The commercials about my illness: do not exist.  Stiff Person Syndrome is rare — incidence is one in one million.

18. Something I really miss doing since I was diagnosed is:  the spontaneity of unhindered, pain-free movement, the freedom to live each day of my own will, playing in the grass with children.

19. It was really hard to have to give up:  physical independence & everything that goes with it.

20. A new hobby I have taken up since my diagnosis is:  blogging, web design, dabbling in several things. 🙂

21. If I could have one day of feeling normal again I would:  Living most of my adult life with SPS, I cannot imagine what I would do.  Probably run like a hyped dog, without direction, after being set free from his chained boundaries.

22. My illness has taught me:  A renewed love & trust in God.  Patience, faith, hope.  The value of humor.  Discovering hidden resources of myself. The beauty of a moment.  The miracle of simple.  The stark reality of everyone’s mortality.  Life is fragile & beautiful.

23. Want to know a secret? One thing people say that gets under my skin is:  In a condescending manner, you look good; you look healthy; you must be having a good day … undermining the severity of what I live by how I look.  Or… “It’s just…” again minimizing the enormity of my reality.

24. But I love it when people:  tell me I inspire them.  Helps give reason & keeps me focused.

25. My favorite motto, scripture, quote that gets me through tough times is:
Thou wilt keep him in perfect peace, whose mind is stayed on thee; because he trusteth in thee. ~Isaiah 25:3 (ASV)
Life isn’t waiting for the storm to pass; it’s about learning to dance in the rain.”

26. When someone is diagnosed I’d like to tell them:  I understand.  It is hard.  Always hope.  Love, laugh & live forward… in spite of.

27. Something that has surprised me about living with an illness is:   Experiencing the way God works.  Discovering a quirky creativity & sense of humor in a tragic diagnosis.  Meeting some of the most amazing people living with adversity … inspirations, friends.  The number of people who live with a rare/invisible illness & social stigmas is astounding.

28. The nicest thing someone did for me when I wasn’t feeling well was:  hold me in loving understanding without saying a word.

29. I’m involved with Invisible Illness Week because:  To be a proactive advocate is being an empowered voice to help an uniformed world understand, if just a little.

30. The fact that you read this list makes me feel:  honored, humbled, & hopeful. 😉

Copyright © 2013

#raredisease
#stiffpersonsyndrome

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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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