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SPS Mother – Love Shows The Way

“Mother love is the fuel that enables a normal human being to do the impossible.” 
~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother’s Soul

“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.” ~Sophia Loren

I always wanted to be a mother, loved raising my children, still love being a Mom.  My second child, my oldest daughter, was born with a terminal, genetic, neurological disorder, no medically known association with Stiff Person Syndrome.  I refer to her as my “shooting star.”  Her short life taught me patience, joy in the simple, appreciation for ordinary, and to cherish the moment.  My faith was strengthened.  With her death, I experienced profound loss.  She helped prepare me for living with Stiff Person Syndrome on many levels, except how to be a disabled mother.

When I was diagnosed, my son was seventeen, almost grown.  My youngest daughter was only four, still needing a “hands on” mother.  Grief and fear were part of my emotional shock at diagnosis, not just for myself, but for her.  How was I going to be an effective mother when I could not walk, barely crawl while in continual spasm?

In my website, Living With Stiff Person Syndrome, I share a pivotal moment.  From the car, I watched my little girl struggle to open the heavy preschool door during a rain until a schoolmates’s grandmother opened it for her.  As drops of rain trailed down the car windows, tears streamed down my cheeks . . . unfit.  Back home, I struggled into the recliner.  I prayed, cried, and thought of how I was going to mother my youngest child.  Love will show the way.

Not one of my children came with a “how-to” manual.  It was a learn as I go.  I was young and inexperienced with my son, religiously followed healthy baby guidelines that are now outdated.  With my second, learning/implementing medical procedures for her care, while coping with my son’s and my emotions were daily challenges.  Love showed the way.  With my youngest, I started thinking about how I could mother with a limited body.  Imagination is wonderful and has no limits.  It was day by day, struggle by struggle, wonder by wonder.

Books, movies, Barbie mall, beauty shop, doctor, dentist . . . we laughed and played.  “In spite of ” SPS, I greatly enjoyed my daughter.  She did not see my limits.  She only saw me as Mommy, her everything.  She made the syndrome magical in some ways — spasm was “spazzle.” Scooting down the stairs on her behind, she told me she wanted to have fun, “just like Mommy.”

As she grew, love not only showed the way; love made a way.  In a parody of a spy thriller dodger, I would slide against walls, look for vertical tangible support with some sort of gait aid to attend her school functions solo.  She was never ashamed of me, always thrilled for me to show up.

I did not discuss SPS with her much, just answered the few questions she may have had.  Considering the personality of my youngest child, that is saying a lot.  She did observe though.  Recognizing distress, she learned at an early age how to help me.  In many ways, my SPS was an unforeseen blessing/teacher in her upbringing.  Strong and individually unique, she has an understanding heart, deep compassion, and wisdom; but zero tolerance for deliberate ignorance.

Now, she is a young woman with a family.  I am in awe of her capabilities.  My worried tears of so many years ago are now tears of pride.  Since she grew up with my SPS, more than anyone in my life, she understands a potential trigger for my symptoms and instinctively knows how to aid me — shopping, hikes, neighborhood walks — finely tuned in to any quiver, startle, or stumble from me.  As I held her hand when she was little, I still hold on to her for stabilization as an adult.

My children, my jewels from heaven.  My son, my firstborn, is an accomplished man.  To quote my son, “We did alright, Mom.”  My second child, my angel baby, taught me so much about God, life, and myself during her brief life.  My youngest, my blessing, gave me reason to live forward with the onset of Stiff Person Syndrome.  With the innocence of childhood, she walked a difficult road with me. Through her eyes, she saw me. 

To my children, who only see the best in me because they are the best of me.  With all my love.♥

                                                                       

A Special Lunch

“To know someone here or there with whom you can feel there is understanding in spite of distances or thoughts expressed. That can make life a garden.” ~Goethe

An extremely rare diagnosis of Stiff Person Syndrome (SPS) also comes with loneliness and isolation . . . a never-ending need to explain with only a glimmer of hope for understanding.  My first communication with another person with SPS was via an Internet support group in 2000, six years after my diagnosis.  Euphoria filled the empty void in my life to have an outlet of mutual understanding.  In the following years, I have personally met 24 or 25 individuals with SPS.  While the Internet can be a wonderful communication tool, I still prefer “real life” to virtual.

Jennifer Trednick & I met on Rare Disease Day as participants for the awareness event in our area.  It was coincidence that we both have Stiff Person Syndrome.  Jennifer told me about Kathi Rose, another lady with SPS, suggesting we all meet for lunch.  After some email tag and schedule shuffling, we had a date, place, and time.  Jennifer, Kathi, and I met a few weeks ago — lunch at an upscale Italian restaurant, located in an Emerald City shopping center.  Instant rapport.  Both ladies are intelligent, optimistic, fun, and full of life.  We share the desire to live forward, know the ugly realities, but embrace the possibility of each day.

Over lunch, we shared diagnostic stories, similar symptoms, differing symptoms, physicians, movement issues, off days, good days, and strategies.  Considering the gravity of SPS topics, our animated conversation could have been on the latest fashions, shoe sale, or hair salons to onlooking patrons.  Dialogue was void of self-pity, negativity, or victimization.  Talking with two women who genuinely understood was liberating, validating, and cathartic for me . . . a good time!

In sharing medications, Jennifer pulled out a sheet of paper to take notes on a certain med — similar to scribbling down the ingredients of a recipe — this one for a batch of unhindered movement.  We shared thoughts on coping.  Physically, we all jump through medication hoops and push personal limits, but yield to the flashing SPS stop sign.  Though emotionally painful, cutting toxic people and situations are necessary for health.  Limited ability is on a timer.  Drama, if a choice, gets taken to the curb.  Laughter, positive people, goals, and “doing” are as necessary as medication.

We learned the general personal details of one another’s lives while validating and learning from each other about the cruel syndrome we share — “the tie that binds.”  (Figuratively and literally.)  Shared female laughter and girl-talk made a few appearances into our lunch talk.

Jennifer and I are both insulin-dependent diabetics with insulin pumps.  If I remember correctly, Kathi is borderline.  Diabetes was another topic of conversation.  Sharing included a show-and-tell of one another’s rigid back.

We had our picture taken outside of the restaurant, normal-looking ladies having lunch.  I greatly enjoyed meeting Jennifer and Kathy, two amazing ladies.  When our busy lives align, we hope to get together again.  It was a special lunch.

 

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

An Ordinary Day

Uptown Girl

Uptown Girl

“I am an ordinary person who has been blessed with extraordinary opportunities and experiences. Today is one of those experiences.” ~Sonia Sotomayor

Yesterday was appearance two of my winter medical tour.  (Tickets on Ebay.)  I had an 11:45 in the city.  Morning routine: meds, bloodcheck, quiet devotional time, coffee while chatting with my mom, and breakfast.  Made the bed, showered, dressed, & did the female public spoofing — on schedule.

Medication eval, time for mid-morning meds and (ominous hush), the interstate.  Though not taught in highschool driver’s education, I quickly learn interstate/rush hour sign language.  Carmen, my nagging garmin, always argues with me over the restructured city infrastructure.  Crankin’ out some rock n roll oldies, Carmen whines “recalculating,” in a repetitive stutter as I veer onto the short exit to an abrupt stop at the medical practice.

With pride, Rocky (my wheeled gym bag), and Frac (one of a set of hiking poles), guide me by my lonesome across the drive to the door.  (With SPS, a solo entrance is always a surprise!)  I sign in just to be told I am two hours early and cannot be worked in.  Stiff Person has taught me to be flexible.  I move the ‘after’ Wal Mart visit to the two-hour wait slot to also include a Mickey D’s desperation lunch.

Cities have everything but a Wal Mart.  Getting directions to the closest one, I travel to an unknown suburb 15 minutes away.  Hastily eating my lunch, I’m off in an SPS version of a shopper’s grab race to collect the items on my list.  Locating one of three open lanes of twenty, I check out and make it back to my appointment, listening to Carmen’s protests again.

A beaming physician comes in with my two-inch chart.  I aced all my labs.  (Still have my triple diagnoses though.)

Some interesting conversations, five-minute friends, from my day:

+ I met a woman outside of the office with a rare disorder(s).  Upbeat, we talked shop and I was actually familiar with her meds.  Fast friends.

+ Bantered with the elevator people, always do.

+ One of the building’s security personnel was downstairs and walked me to my car.  He is one of my regular ‘walk and talks.’

+ Was included in some inside employee intrigue at Wal Mart with the cashier and an employee off the clock.

Feeling thankful for my lab results, I chose to avoid the rush of the interstate with a leisurely drive through the quieter city streets, absorbing the magnificent buildings, intricate bridges, glistening water — later the antebellum homes of the historic area.  Yielding to a needed caffeine boost, it was another McDonald’s stop for an iced coffee to continue my drive and ‘high five’ day.

Another med eval and bloodcheck.  Having weathered a few rough days, I thought a gym visit might help loosen things up.  After initial objections, my body responded in unison with my mind.  To compensate for the earlier unhealthy fast food lunch, supper was a Mt. Everest gourmet salad.

Fatigued and in pain, I was feeling the physical effects of a busy day.  Filling the tub with hot water and scented soap, a music channel soothed my senses as the steaming soak relaxed my body.  The heated electric blanket on the mattress beckoned as I slid between the covers.  I went to sleep happy, at peace, and with a prayer of thanksgiving on my lips.  I cherished what many would consider “an ordinary day.”

Love Is All Around (Theme Song from The Mary Tyler Moore Show)

Copyright © 2013

Rare_Disease_Day_Logo_Hope_1

A Moment

“Nothing valuable can be lost by taking time.” ~Abraham Lincoln

Before my Stiff Person Syndrome diagnosis, I savored life as a super-sized–fries with that please–get it to go bagged rush.  Hope they remembered ketchup; did I ask?  I enjoyed life from the fast lane of juggling work, children, home with bites of vacation, make time for a book, stolen minutes of solitude.  The future beckoned with slower paced promise, “the” time to enjoy life more than I already did.

Diagnosis was a brick wall crash splintering my windshield view of all the envisioned good times, crumpling my hectic now…gone in a moment.  I could only look with grief through the intact rear view window of “what was.”  Crawling from my life’s wreckage, busyness became surviving a day of symptoms, escalating doctor appointments, a future destiny of joy became deflated tires going nowhere.

It would be so easy to stay in a Comfort Inn in defeated complacency.  I still had a little Daytona in my engine.  I began to see possibility in overlooked slowtrotting, harnessed my wagon to a bony nag and began my rut-jarring life journey in unchartered territory.  I did not expect the wonders of seeing the world through a slower pace of disabled challenge.

Time.  What I have learned–an hour is an hour, frenzied sprint or savored stroll.  A second is an eternity when twisted in painful spasm or a wonder when looking at a twinkling summer sky.  My biggest regret?  Rushing through life before my diagnosis and letting all the possibilities of a moment slip through my fingers because I did not take the time.

This summer I was traveling along an interstate.  A road sign advertised “scenic overlook” ahead.  Years of speeding by numerous scenic overlooks convicted me.  I pulled over.  I grabbed my camera, hiking pole, & surrogate wheeled backpack, “Rocky.”  I managed the slight downward graveled incline and took a moment to enjoy the view of the scenic picture heading this post.

A moment.

To realize the value of ONE YEAR, ask a student who has failed a grade.
To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.
To realize the value of ONE WEEK, ask an editor of a weekly newspaper.
To realize the value of ONE DAY, ask a daily wage labourer who has kids to feed.
To realize the value of ONE HOUR, ask the bride who is waiting to meet her groom.
To realize the value of ONE MINUTE, ask a person who has missed the train.
To realize the value of ONE SECOND, ask a person who has avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who has won a silver medal in the Olympics.

~Unknown

Copyright © 2012

I Am Alive!

Every man dies – Not every man really lives.” ~William Ross Wallace

No one ever finds life worth living – one has to make it worth living.” ~Unknown

“A life worth reliving.”

Occasionally I will take a community class–fun, social, learn a new skill (?), mind expansion. A few years ago, the instructor of my chosen class gave us five minutes to write our epitaph. I pulled the above caption from the sincerity of my heart “in spite of” some of the cards fate had dealt me in life.

Watching my second child succumb to the cruelty of a terminal genetic neurological disorder, my Stiff Person Syndrome diagnosis was a mind-numbing moment due to the horrendous enormity of what I was facing, yet again. “Sudden Death” was a possible grim prognosis on the papers submitted to insurance for approval of treatment. In 1994, not having Internet access to some of the stark information about SPS did not further fuel the consuming burn of fear charring my spirit.

Love is a strong motivator, my family. Determination, prayer, and coming to terms struggled with the severity of my symptoms. In the stillness of the night, sleep eluded me as the reality of my diagnosis taunted the fears of my mind while my body ached with relentless pain.

In an archaic medical article, I read a passage my heart embraced with hope. “The course is slowly progressive or indolent.” I envisioned the lazy river of my childhood, a peaceful escape for me. It was during this time a truth relevant to every living person focused with clarity for me…

Tomorrow is never a guarantee for anyone. Today, this moment, is all anyone has. With good health, my presumed longevity was so casually taken for granted. With a chronic illness, I came face-to-face with my mortality. I had two choices: 1) Live each day as execution day on death row. 2) Deeply appreciate and live for the moment. I chose the second option.

Years later, my prognosis of “Sudden Death” is still on paper in one of my medical record boxes. With the band aid fix of treatment and medication, my symptoms have improved. The Grim Reaper is still an ankle-biter keeping me grounded. In 2007 I had a near respiratory arrest in an emotional confrontation. I have had a few unexpected falls along with a couple episodes of full-body spasms, vicious reminders.

I am a ‘brittle’ diabetic. Diabetes is one of the syndrome’s best friends, possibly lover. Yesterday I went from normal readings to a 457 before bed to wake to a sweating 37 at 3:30. I walked down the hall in a familiar nocturnal kitchen raid for my mini candy bars and a toddler grape juice. I woke this morning to sunshine, a rested body and gratitude. My sugar ranges are like the Wall Street Stock Exchange on crack. I am considering making my glucose readings a Vegas bet. But…

I am a well-loved woman, close to my family, have amazing grandchildren and loving friends. Blessed with imagination and a sense of humor, I laugh often. Life is joyful. Inquisitive, there is so much to learn, see, experience. When my meds peak, I make good use of my allotted time of ‘functional’ disability! Grateful, I embrace the comfort and blessings God continually gifts to me.

Recently, I enjoyed the freedom of a solo road trip. Cranking up a mix of tunes, my thoughts soared, my heart sang and the diversity of roadside beauty distracted my white line vigilance for a few seconds of rapt appreciation.

I am alive!

I would rather live my life as if there is a God and die to find out there isn’t, than live my life as if there isn’t and die to find out there is.” ~Albert Camus

Copyright © 2012

Touch Me

“A woman’s heart is a deep ocean of secrets.” ~Gloria Stuart

“I am middle-aged, chronically-ill, and disabled.  I am also a woman, with a woman’s heart.  I would like to share a short poem I wrote a few years ago.  First love? Lost love? Current love? Future love?  A combination of all? …an ocean of deep secrets.

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Touch Me

Touch my mind.
Share my thoughts.
Enter my dreams.
Know me.

Touch my soul.
Share my essence.
Enter my being.
Understand me.

Touch my heart.
Share my offering.
Enter my life.
Love me.

Take my breath.
Touch me.

Copyright © Debra A. Richardson