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Tough Mudders

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.” ~Michael Jordan

What is Tough Mudder?  As The Premier Obstacle Course Series In The World, Tough Mudder events are hardcore 10-12 mile obstacle courses designed by British Special Forces to test your all around strength, stamina, mental grit, and camaraderie.

The Pledge: (three of the statements)

As a Tough Mudder I pledge that…

* I understand that Tough Mudder is not a race but a challenge.

* I help my fellow Mudders complete the course.

* I overcome all fears.

“The dogmas of the quiet past are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise with the occasion. As our case is new, so we must think anew and act anew.” ~Abraham Lincloln

Recently, I became familiar with Tough Mudder at the gym.  Kevin, one of my gym buddies, was training hard for it and explained a little about the event to me.  *A group, from the gym, were participating together.  (Congrats on their finish!!)  If you have made it this far through my post, you are probably wondering, What does this have to do with Stiff Person Syndrome?

A lot of effort and training goes into participating in the challenges of a Tough Mudder, but participation is a choice.  A diagnosis of Stiff Person Syndrome is a daily (24/7) challenge with an unpredictable, always changing obstacle course.  Participation is never a choice.

The video of a Tough Mudder course is very much what a day of living with SPS can be — a neurologically-challenged body struggling against the physically-distorted reactions of visual perception, the energy/effort required to do the simple, often requiring a helping hand — a grueling obstacle course in the normal world of ordinary and mundane.

During my early years, regressive days or times, I have slid down stairs on my stomach, body rigid and trembling in spasm, drenched in sweat from exertion.  Maneuvering around scattered toys/items on the floor can be equivalent to navigating a minefield.  Crawling through the house, I look(ed) for handholds, footrests, plan a strategic move to round a corner.  With SPS, public outings have morphed into overwhelming challenges at the whim of syndrome symptoms.  The world takes on the appearance and physical grit of a Tough Mudder competition.

Syndrome spasms have twisted my torso muscles, much like wringing a dishrag — hijacking my ability to negotiate mobility release.  Injury from unforeseen body-slam falls becomes a defensive consideration in every move.  Pain is variable, but present every day.  The SPS Mudder is not 10 or 12 miles with a finish, but for every moment, of every day, for life.  There isn’t a training guide for living with the challenges of SPS, nor any debilitating diagnosis.  Training is learned as you live.  I liked three of the statements of the Tough Mudder pledge as they personally pertain to some of my coping strategies.

I cannot compete against the person I was before diagnosis, “not a race but a challenge.”  I can only be the best with who I am now.  “One day at a time.”  It takes a lot of work, determination, endurance, and positive mindset . . . (“strength, stamina, mental grit“).  It is extremely difficult living in a fickle body.  Last week….

For some syndrome mystery, pain was high and ability was low.  Sunday climaxed into a torso lockdown at the grocery.  Leaning on the cart, I managed a slow shuffle, my weight entirely on the cart, as my back arced in the familiar painful contraction of restraint.  Focusing on deep slow breaths, with attempted mind diversion of songs to calm visual overload, I managed to slowly shuffle/slide to the car . . . an accomplishment. Hoo-Rah!

Tuesday, I packed a lunch to take “Leon,” my jogging stroller, for a walk and picnic, outdoor therapy.  My short-circuited SPS nervous system unexpectantly connected?  I was able to trot an easy five miles . . . an accomplishment.  Hoo-Rah!

I can’t say I’ve overcome all fears.  Stiff Person Syndrome has a grim reality that I work hard to face with faith and optimism on a daily basis.  (Sunday was also an emotional challenge.)  I have some beloved syndrome friends (syndrome mudders) who are an encouragement to me many times, an outstretched hand of team support.  Hoo-Rah!

I loved watching the video of the Tough Mudder, the smiles and thrills of accomplishment.  I understand euphoric victory in overcoming a challenge.  My heart smiles at the thrills of my accomplishments, if just pulling weeds, tying my shoes, or jogging with “Leon.”  Hoo-Rah! 

Dedications:

To our nation’s finest and bravest, with loving gratitude — America’s Military.  The Tough Mudder raises money for The Wounded Warrior Project.

Often, I will use soldier and war analogy in describing life with Stiff Person Syndrome.  Living with a disabling disease is a life of front-line combat and the diagnosed are casualties.  To my SPS comrades — thank you for your encouragement, inspiration, and support.♥

*To my gym buddies — thank your for the smiles, fun, understanding, and helping hands.  “Hoo-Rah” for finishing the Tough Mudder!

We are Tough Mudders!

“It’s not what you can’t do, it’s what you can do!” ~ From The Wounded Warrior Project

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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.♥

                                                                       

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

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