STIFF PERSON SYNDROME - ​​L IVING FORWARD

​awareness, knowledge, hope

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RISE OF THE PHOENIX​​

​RISE OF THE PHOENIX​

“The phoenix hope, can wing her way through the desert skies, and still defying fortune's spite; revive from ashes and rise.”

―Miguel de Cervantes
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​​Mystical and rare, the mythological phoenix is a revered symbolism of rebirth, dying in a nest of flames to soar from the ashes of ruin.


September, 2011

This month marks the 15th anniversay of my SPS diagnosis, following four-five years of symptoms.  For twenty-one years I have lived with Stiff Person Syndrome -- triumphed, failed, loved, lost, cried, laughed, persevered ... "in spite of."

Since my diagnosis, I have sustained injuries from falls, a set of broken ribs, a radial nerve injury to my left arm, and a near respiratory arrest.  Prescription medications and booster infusions of IVIg have lessened the severity of body spasms and hip/torso rigidity to a quality of life improvement, a 'tenative stability.'

To me, a 'tenative stability' would be a margin of four lines on the top half of a page of thirty.  I fluctuate but primarily stay within my four lines -- good days and bad days.  Some days, a trigger will precipitate an episode of spasm, immobility, or painful contraction for me.  SPS thrills and spills.

I am very sensitive to unknown situations, hurry, or stress (good and bad).  Agoraphobia (SPS-induced anxiety over open spaces), continues to be a throat closing paranoia for me.  I utilize some tactical maneuvers or mental distractions that may help in some situations.

I try to preplan activities, have acquired some diversionary skills, realize my limitations, and give myself needed breaks.  It has been crucial to cut unnecessary negatives from my life.  As much as possible, I try to correlate my physical pursuits with medication peaks.

Upredictable episodes of spasm or rigidity can still compromise my mobility within the familiarity of my home.  Pain levels ebb and flow like a tide.  The frequency and severity of my symptoms have lessened significantly with a beneficial treatment regimen, but when an episode occurs, it is a somber reminder of how far I have come and where I could possibly go.

Coping.  Every day involves coping.  After sorting through my diagnostic grief, I thought I had come to terms with all the emotional issues of a life-altering, disabling condition.  Every day as I evolve, life around me evolves, people evolve, and my SPS evolves.  Coping is as much a part of my daily syndrome maintenance as my medications ... my daily existance.

Moving out west gave me anonymity at the price of loneliness.  I lost more pieces of me: friends, social outlets, hometown familiarity.  I found an online support group.  For several years, a few special people became my friends, mentors, and social life.   I will always carry them in my heart.

My beautiful daughter was growing into her life.  My former husband had his.  I had Windows XP, appropriately named, my window to the world.  A cyber hermit, the sound of the television was background noise to muffle the oppressive silence interrupted by the rythmic click of my keyboard.  My life was vicariously shared with several unknown entities through a computer screen with SPS as the unifying focus.

As with many marriages, my former husband and I disconnected.  He planned our future based on his dreams without consideration for what I wanted or medically needed.  I had demeaned myself to become 'indebted' out of a sense of guilt and lack of self-worth ... 'damaged goods.'  I sacrificed me.

I struggled against the blackness of depression for the possession of my very soul.  I had reached a point where I wanted a real life for me, whatever it could be with disability.  I needed to matter.  An SPS guru, cyber-socialite, frequent flyer patient, dutiful wife, family roles ... Where was Debbie?" 

Marriage counseling was a futile effort.  The emotional stress triggered a near respiratory arrest for me -- a defining moment.  The marriage ended.

My daughter and I moved into a condo, our girl pad.  That time was a respite of reflection for me.  What did I envision for the rest of my life?  I wanted to be defined as a woman, an individual, not just an extension of another person, SPS groupie, or medical rarity.  Midlife, my encore.  I wanted to be Debbie.

Unknown at the time, the move out west was with the sacrifice of knowledgeable healthcare.  The remote area in which we had lived did not have proximal medical resources needed for specialized SPS/diabetes care, especially as I was approaching midlife as a single woman.  Another pivotal moment:  While in spasm, crawling across a cold sidewalk to get in my car, I realized I knew no one outside of my daughter or mom (with her own health issues), to assist me during a medical crisis.  In 2008, I moved to the East Coast after meeting a knowledgeable SPS neurologist.  Again, SPS moved with me.

Another reassessing, redefining, reawakening, ressurection in my life. 





Dear Lord,
​Give me a few friends
who will love me for what I am,
and keep ever burning
before my vagrant steps
the kindly light of hope...
And though I come not within sight
of the castle of my dreams,
teach me to be thankful for life,
and for time's olden memories
that are good and sweet.
And may the evening's twilight
find me gentle still.

~Celtic Prayer~



​​​EGG OF THE PHOENIX

"Change is the constant, the signal for rebirth, the egg of the phoenix."
~Christina Baldwin





 Reflection

The mirror frames the woman.
Tender hands ascend her arms to caress bare shoulders.
She closes her eyes in anticipation and need.
Delicate fingers continue to explore her neck,
sliding in a slow descent down her exposed sides.
Loving hands unite in gentle strokes over her ribs.
Opening her eyes, she watches the reflection in rapt fascination.
The hands pause in worship beneath the soft swell of her breasts.
Feather light fingers trace the boundaries in a reverent tease.
She guides her hands to once again ascend her arms.
In a comforting embrace, she holds herself in yearning
as a silent sob echoes in the loneliness of her soul.
 
© 2006 Debra A. Richardson


February, 2018
 
My Story opening -- “hindsight is always 20/20.”  In looking back, the years 2006 through 2010 were a numbing state of indifferent apathy, a clinical depression.  I did not recognize it.  My teenager did.  Going through the motions of life, I did what I was supposed to, laughed at appropriate times, functioned.  I slipped deeper into desperation and despair, but I was above (hushed whisper), depression.

In 2010, I seriously started contemplating suicide -- how, when. Darkness engulfed my thoughts, feelings -- my life.  One bright light kept piercing the heavy darkness in my heart -- love for my children.  Acknowledging my depression, I moved into a small apartment I christened, “My Healing Place.” I was truly alone except for my one constant companion, Stiff Person Syndrome.  It was a frightening and daring move, but I knew I would die if I did not give myself time to address all of the pain, grief, and loss I had experienced with my diagnosis, a decade of homebound isolation, and the consequences of wrong decisions made from desperation.  I promised myself not to make any life-changing decisions for two years.

Initially, I cried, sobbed, and recorded my pain through prayer, journaling, and a Christian support group.  I also thrived having my first apartment with me being the only focus – no worries for anyone else.  I was my first and only priority.

There were many obstacles.  I needed a gait aid to get around, diabetic hypos, episodes of spasm, and on it goes.  After years of being with just family or an onlooker in the social circles of others, I had forgotten how to be with people, especially by myself. Talk about daunting.

The initial severity of symptom movement triggered body whiplash spasm with just passive stretching.  As the movement trigger had lessened with years and beneficial medication, I wanted to work on improving my physical abilities.  Knowing my body and how SPS affects me, I became my trainer/physical therapist.  With a wheeled backpack and hiking pole, I navigated into a local gym.  Employees would walk me back to my car.

I began visiting churches.  Trying to reenter the ‘normal’ world as an abnormal imposter was an enormous undertaking.  Joining a local speech club, I needed to deal with facing an audience (scrutiny alert), while keeping my subconscious SPS mindset scoping for fall hazards and handgrips.  My first speech was an intro about me and Stiff Person Syndrome.  Looking into  the faces of a captive audience, that skeleton rattled out of the closet with applause and several accolades.

Would men find a middle-aged disabled woman attractive?  I was very surprised.  They did.  It was a great affirmation after feeling like I was broken and worthless.  

I have had tumbles, mishaps, another set of broken ribs, spasms, and all the textbook descriptions of Stiff Person Syndrome tagging along in my pursuits.  Always, the syndrome lurks in the shadows of my thoughts, resurfacing at times to chip at my confidence or throw a curveball.  Blood splatters, from a head busting fall, remain on the garage floor as a reminder of my reality and what I achieve, "in spite of."  I have made friends, discovered new interests, reacquainted with some dusty passions and have had some amazing accomplishments. As the choreographer for each new day, I assess the script with my abilities, make necessary changes, and try to have a show stopping curtain call that evening. 

Living almost 30 years with SPS, I have lost most of my adulthood to having the syndrome with the Type-1 Diabetes combo -- Classic Stiff Person Syndrome.  I have so much to share about this time in my life.  My writing hiatus from my blog, Chronic Chaos, has been devoted to life outside of Stiff Person Syndrome. It is my intent to share this time of healing and growth by resuming my blogging.

I wrote the opening poem during my dark days, a time of great loneliness.  I still have moments that create struggling turmoil within my well-being – ‘what if’____.  I have many words to fill in the blank.  Coping is a daily journey.
More often now, I hug myself in gratitude more than loneliness.  As always, I am blessed with the love of family, special people in my life, and especially the strength and comfort of my Savior.
       
                                 

"Thou will keep him in perfect peace whose mind is stayed on Thee; because he trusteth in Thee." ~Isaiah 26:3

 
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"Yesterday is gone, tomorrow has not yet come. We have only today, let us begin."

​~Mother Teresa
  1. A new day.
    A new day.
    Every new beginning comes from some other beginning's end...
  2. Coping
    Coping
    I'm not afraid of storms, for I'm learning how to sail my ship. Louisa May Alcott
  3. Hope
    Hope
    The sky takes on shades of orange during sunrise and sunset, the colour that gives you hope that the sun will set only to rise again. Ram Charan
  4. Day's End - Face Another Day
    Day's End - Face Another Day
    Courage is being scared to death... and saddling up anyway. John Wayne