Archives

In My Daughter’s Eyes – TBT

 

023


“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.

valentines_053_02_thm1

rickvanderzwet_Two_sixteeth_notes_1  A Mother’s Prayer

© 2006 Debra A. Richardson

#raredisease
#chronicillness
#stiffpersonsyndrome
#loveofachild
#coping

Advertisements

Flowers, Butterflies, Persistance, Moments

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

317614_170921946315814_7039914_n

“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.

67405618_2878618048879510_1688221802901274624_n
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.

th (1)

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)

20190616_141206_HDR

©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

th57VDA7XZ

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

jean_victor_balin_double_croche (1)
The Great Pretender
I-cant-forget-but-i-can-pretend

#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

valentines_053_02_thm1

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

238

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