Be Still

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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

Life is a carousel of frenzied activity.  Achievement is often perceived as a degree followed by a prestigious career. In the pursuit of material possessions, acquisition brings fulfillment. The American Dream has been defined for us – a brick ranch home nestled in a trendy suburb, marriage to an achiever, two children (a boy and a girl.), and the family pedigree dog–neutered. Living the hectic relay of adroitly switching the baton between achievement, fulfillment, and the American Dream, you earn the respect of your fellow man …success.

With the invasion of a chronic neurological illness, my perspectives on life: achievement, fulfillment, dreams, and success – were drastically altered. Illness has given me deeper insight.

Introspection revealed an identity-defining concept – doing. Doing, in guises as work, play, duty, or just walking, were a simplistic assumption with good health. Effort mainly required my time for doing. Often, time was lazily excused or selfishly hoarded. Only in the quiet torments of “I can’t anymore,” did I realize doing defined self worth — a convenient social mask concealing my inner identity from me.

Illness stripped me of the physical freedoms of can, will, able, walk — do. My body became a prison – my mind, a cruel jailer. Despair, fear, and loneliness became my cellmates. In the solitary confinement of my incarceration, the light of revelation filtered through the bars. Imprisoned in physical cannot do, I became reacquainted with a new concept – being.

Being can be a brutal reflection in the mirror of honest assessment. Self gets misplaced in the repetitious quest of daily doing. In the stillness of being, I could hear the faint whispering of a forgotten voice — my inner self. I discovered tattered remnants of me. Focus on doing had overshadowed who I was. Reassess, readjust, redo, and reaffirm have become life skills for continual personal renewal and growth.

My perspectives have changed. Life is recognizing all the miracles previously overlooked in daily frenzied ritual – a cool caressing breeze on my heated face (a kiss from God), radiance illuminating from the furrowed face of an elderly lady’s smile, an erratic fluttering dance of a single butterfly. Achievement is putting on my own shoes with pride and gratitude. Accomplishment is euphoric – the perseverance to keep trying. Fulfillment is falling deeply in love with life every morning.

The American Dream has become just that – a dream. My dreams are endless, personal, and fly on the wings of imagination. Success is living a full life, finding happiness while overcoming obstacles – in spite of. I do not see the glass as half empty or half full. I am blessed to have a glass. If my glass is full, it is time to empty it by giving. If my glass is empty, it is time to renew in the healing stillness of just being.

“Man cannot remake himself without suffering, for he is both the marble and the sculptor.”
~Dr. Alexis Carrel~

© 2004 Debra A. Richardson

#TBT
#disability
#stiffpersonsyndrome

#chronicillness
#achievement


Social Distancing

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To control the spread of the Corona Virus, COVID-19, we are on a temporary quarantine, “social distancing” to be politically correct.  People are in a panic, hoarding items such as toilet paper, or frustrated at the stall in a busy and unhindered life.  The current social distancing is temporary, but when the restriction is lifted, life will resume in its normal hectic pace.


 

“Every terrorist regime in the world uses isolation to break people’s spirits.”~Bell Hooks

“Solitude, isolation, are painful things, and beyond human endurance.” ~Jules Verne

In 1994, a diagnosis of Stiff Person Syndrome identified the cruel terrorist who had taken my life captive.  Struggling with my physical symptoms, I began to learn the deeper ramifications of a disabling chronic and rare disease — imposed isolation.  My diagnosis is not temporary, but for life.

Predominantly during my early years, mobility was severely compromised with continual spasms.  Due to my nervous system under constant attack; distorted perceptions of space, touch, noise, and other external stimuli overloaded my sensory circuits.  “Outside” was a definite no-can-do while inside was a crippling comfort.  Under “social distancing” (imposed isolation), I had a lonely peace.

Peace came at a hefty price.  As my friends continued to work and function in the outside world, I was on an indefinite diagnostic house arrest.  Gradually they drifted into obscurity.  As my phone slowly stopped ringing, I immersed in books and old television reruns, waiting for family to come home from school and work.  Waiting.

Often, I refer to the syndrome as a terrorist, stalker. or jailer.  SPS is all three.  Imposed isolation is a dark and lonely existence. You cease to matter, even to yourself.  Within the shadowy darkness of  my confines, I began emulating many isolated prisoners, developing survival techniques for my mind and spirit.  I lived life going through the motions, robotic and obedient.  Dreams wilted with the discouraging reality of my limitations.  Not only losing my health, I lost me, my life.

Emerging from an emotional breakdown in 2010, I began working hard on my long denied spiritual, mental, and physical components of self.  Breaking through some protective walls, I have slowly emerged as a physically-challenged “normal” individual within a time limit.  It will always require a lot of work.

In the abyss of loneliness, I rediscovered Debbie, untapped things within me.  I have learned to appreciate the beauty of a moment, the simple.  Having a deep love for people and social interaction, I have reconnected with others.  I still enjoy my own company.  I find comfort and satisfaction in social distancing, now referred to as my peaceful solitude.

A perspective:

Many are struggling with the COVID-19 social distancing quarantine right now.  It is temporary.  For many of us with chronic illness, imposed social distancing is part of the lifelong diagnosis.  Think of us.

jean_victor_balin_double_croche (1)The Sound Of Silence

“There’s a difference between solitude and loneliness.” 
~Maggie Smith

Thomas Anunziata

© 2019 Debra A. Richardson

#chronicillness
#stiffpersonsyndrome
#raredisease
#isolation
#socialdistancing


 

My Mom – A Steel Magnolia

 “Mother is she who can take the place of all others but whose place no one else can take.” ~Unknown

“The love of a mother is the veil of a softer light between the heart and the heavenly Father.” ~Samuel Taylor Coleridge

chairDuring my visit with Mom in May of 2018, I knew it would most likely be my last.  As she sat in her rocker/recliner, I would frequently sit on the floor beside her so I could lay my head on her lap…a ritual.  Stroking my hair, she wondered if I could prolong this visit.  There was never enough time with my frequent physician appointments, requiring strategic planning for my visits between appointments.

Her declining health and understandable fatigue in living with her complicated health issues had slowly stolen her joy for life. In spite of our compromised health situations, I managed to rent a wheelchair for her (a gait-aid for me in an emergency).  We enjoyed our favorite lunches out, split “our” desserts, finagled some shopping, and had some of our special girl talks over ice cream and Life Time movies.

A serious and abrupt emergency had me quickly return with a grim prognosis.  In a rebound/setback scenario, emotions ran high for my siblings and me.  In her good moments, Mom was clear in her expressed desires.

Always a genteel southern lady, a “steel magnolia”, my mom gracefully made her exit from this life in her time, her way.

Dealing with deep grief, somehow I was able to handle her affairs.  Due to her advanced age and serious health issues, Mom had not been able to take care of her business like before.  This was a major undertaking, especially as stress and emotions are triggers for Stiff Person Syndrome.  I believe love gives one superhuman strength.  God was my comfort.

It has taken all of this time to get everything settled while submerged in the sadness of missing Mom.  So often I find myself thinking to phone her just to have another wave of reality submerge me again into a heavy nothingness.  She is not there.

I am now experiencing some renewed physical setbacks from the emotional shutdown and my derailed comfort routine of the past several months. I know my siblings and I will never “heal” from losing Mom, but I can refocus and work on regaining lost ground.

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In going through papers, I found this birthday card to me, close to my birthday.  The sentiments of the card were a heaven sent message from her, encouragement for me to continue to work hard.

I kept her chair.  At first I did not want it, but now I am glad I have it…so many precious memories.  I sit in it at times. Quiet.  In those moments, I feel her hug me.

Life with a chronic rare disease is hard and all consuming.  It is not the only issue to have to cope. Life has the ordinary common trials, obstacles that come our way; sometimes a heart punch.  I was blessed to have a great role model.  Mom dealt with some difficult life problems, later diagnosed with a differing rare neurological disorder after I received mine.  As always, she handled everything with grace, faith, and strength.  A steel magnolia, my best friend, my mom, forever in my heart. ♥

jean_victor_balin_double_croche (1) IF YOU COULD SEE ME NOW

“My mom is a lifelong smile in my heart, her voice a comfort to my soul, her hugs my ladder to the stars.” ~Terri Guillemets

© 2019 Debra A. Richardson

#grief
#mother
#chronicdisease
#raredisease
#stiffpersonsyndrome

 

 

 

 

 

In My Daughter’s Eyes – TBT

 

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“All my life’s problems have one simple solution, a hug from my daughter.” ~Unknown

“A daughter is God’s way of saying “thought you could use a lifelong friend.” ~Unknown

November 17, 2006

It doesn’t happen often, but sometimes I dissolve in an emotional meltdown.  Yesterday was such a day.  Living each day working with and around symptoms, remembering medications and a merry-go-round of medical appointments, while absorbing the frenzy of a hectic family schedule, knowing in spite of my physical limitations so much depends on me.  The enormity will sometimes cause my knees to buckle and I fall into a sobbing  heap of frustration.  The consuming energy in living a life with SPS, I feel like I lose me.  I cried, “I matter.”

After an occasional pity purge, I can renew my “hutzpah,” regroup, and refocus.  In unexpected ways, I am reminded I do matter and others do see my struggles.  My daughter wrote the following poem for an English class.  Unknowing of my previous upset, she gave breath to my weary soul.

The Internal Fight

You with the crooked spine
You will always be considered mine.
I know you have an internal illness,
You fight it every day.
I don’t know how one can deal,
When so much fright is thrown your way.

I loved you before,
I know I love you more,

You nurtured me young,
I shall nurture you old.

I know you feel pain,
And its such a big problem.
I look up to you mom,
I know you will make it work.
Your eyes are still wild,
Like your body sometimes is.
Spiderwoman on the wall,
Who can cling best of all?

My mommy can,
best lady of them all.

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rickvanderzwet_Two_sixteeth_notes_1  A Mother’s Prayer

© 2006 Debra A. Richardson

#raredisease
#chronicillness
#stiffpersonsyndrome
#loveofachild
#coping

Flowers, Butterflies, Persistance, Moments

“The butterfly counts not months but moments, and has time enough.”
~Rabindranath Tagore

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“What the caterpillar calls the end of the world, the master calls a butterfly.” 
~Richard Bach

Every spring I looked forward to planting flowers to enliven the house exterior with color, a summer makeover after barren winter months.  I had my blooming favorites; a yearly warm weather celebration; feeling and smelling the warm earth while envisioning the rainbow explosion of floral decor.

After my autumn disease diagnosis, I refused to accept my grim prognosis.  The limitations of the severity of my rare disorder were a constant mental/physical struggle–the end of my world.  After that first gut-wrenching winter of dealing with the pain of continual spasm and grief over my lost life, spring came…a taunt.

With determination, I decided I would still plant my flowers.  With trowel in hand, I was helped to the grass where I crawled dragging my plants and a towel for my knees.  The exertion of digging the soft earth with the trowel created ripples of painful body spasm with the effort. Scooting, creeping around the side of the house to the front, I managed to plant my flowers.  As I was helped back into the house, I felt a victorious pride over planting my flowers.  In celebration, they burst open with beauty as summer came–a beginning.

After several years, I transplanted to southern climes.  My love for flowers continued, but I faced several new obstacles to planting: bugs on steroids, heat, stray animals.  My years of lessons learned in coping with illness were helpful with gardening–understand the current problem, think of options/solutions, persistence.

As a frequent flyer to the nurseries, I am learning what plants thrive, are easy maintenance, and attract butterflies/bees. Synonymous with learning to live with my challenges; I see what helps me thrive, easy life maintenance tricks, and what attracts moments of happiness.

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Patio doors open to my solarium.  For years, I only had a couple of chairs and a table for decor.  This year, I added various tropical plants, some stone, and a fountain with LED lights.  At night, the trickling water creates a peaceful ambiance with a hint of rain forest inside the house…peaceful moments.

Sitting on my back patio, a cup of coffee is slowly savored as I take in my flower beds and assorted pots.  An occasional hummingbird or butterfly will visit, hovering over the antics of my little lizards…precious moments.

I may not be able to control external elements, but I can focus on moments, appreciate beauty, and with God’s help, create it.

How fair is a garden amid the trials and passions of existence. ~Benjamin Disraeli

jean_victor_balin_double_croche (1) One Moment In Time

Copyright © 2019

#gardening
#raredisease
#stiffpersonsyndrome
#livingforward
#moments

 

 

 

 

 

 

 

 

 

National Lampoon’s SPS Vacation

“The vacation we often need is freedom from our own mind.” ~Jack Adam Weber

“The journey, not the arrival, matters.” ~T. S. Eliot

National Lampoon’s Vacation, starring Chevy Chase, chronicles the comedic obstacles of a family vacation. In the pursuit of the perfect dream vacation to Wally World in the original film, the Griswold family is beset with hilarious travel setbacks, detours, and disappointments.   With the devastation of their beginning enthusiasm, the Griswolds finally arrive at Wally World to find the park is closed.  Frustrated disappointment escalates into more problems until the kindly intervention of Wally World’s owner and the predictable happy ending.

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Traveling with Stiff Person Syndrome easily qualifies for a National Lampoon’s spoof of a “quest for fun.” “Quest for fun” becomes a holy grail.

After decades with SPS as a traveling companion, I still feel angst leaving the security of home several days before.  Packing my medications, insulin pump supplies, Plan B diabetic delivery, insulin, sugar low tablets, glucometer, testing strips, and ER protocol papers from my neurologist; my carry-on is full.  (Have more medical baggage than cosmetics!) Resembling a drug dealer, more concerns rattle my well-being at impending airport security.

Passing the shoe check, insulin pump explosive device check, and cleared luggage; a Starbucks stop is a nerve calming reward before getting to the gate.  A sense of rush is not in my bag of tricks, so I settle for a two-hour wait until departure, only for the hectic dash to baggage claim and retrieve my stuff upon landing.  Airport navigation is always a syndrome assault on my senses.

I prefer traveling by car without all the travel restrictions.  With snacks and water in the back seat, great tunes fill the car so I can absorb the scenery at a pace of my choosing.  Stops are at a comfortable two-hour increment reprieve for gas, food, or a scenic overlook.

Recently, I returned from a two-week vacation involving a trip to Utah and a family visit.  My only Griswold experiences were the mayhem in packing for the trip.  After a non-eventful straight flight and rental car pickup, my Forever Bestie (FB) and I were on the road to our adventure.

I am blessed my FB understands my health conditions and is very accommodating of me. Sugar lows and body constrictions are not a focus.  Enjoying the panoramic scenery en-route to Moab, we periodically stopped to take in a breathtaking vista or just “talk and gawk.”

Sounding cliche’, the parks in Moab were “totally awesome.”  We planned the trip with an easy pace, adding to our enjoyment. Absorbing the magnificence of each park, I felt small with the grandeur of each overlook.  Nature’s wonder is healing to the soul…a sense of affinity…a holy grail.

MOAB UTAH
(pics on the Scrapbook Page)

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©2019 Debra A. Richardson

Since diagnosed in 1996, I chose not to let my diagnosis deter me from any *possible* adventure without trying.  Through travel travails and life challenges, I have shared wonderful experiences with individuals who have the same life yearnings as me.  I am grateful. ♥

As the quest continues…

#stiff person syndrome
#chronic illness
#diabetes
#travel

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

 

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