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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

I Have A Name – Debbie

December 21, 2011

“You were born an original. Don’t die a copy.” ~John Mason

Some may call it a midlife crisis when you reach 50 and begin redefining your life for your encore. My life crisis came at 36 with a chronic life-altering diagnosis, life sentence, of Stiff Person Syndrome.

With that diagnosis, I lost my life, identity, and future to be tossed on the self-deprecating heap of “disabled” humanity. My beloved role of mother became more than a facet of me, but my reason for living. As a wife, I devalued myself as being “indebted,” a worthless burden, losing self-respect, love of self, sense of me–rebounding into a familiar comfort role.

Finding purpose in my affliction, I immersed myself into an outreach of hope and encouragement to others. Commendable, but I was drowning in my diagnosis, ICD-9 code 333.91. My name was secondary to various aliases, i.e. chart numbers, in several states under several specialists.

I had ceased to dream for my future, focusing on making the dreams of others a reality. As the body dies without nourishment, so the spirit will die without vision. In moments of self awareness in a double dip depression, I immerged from the engulfing depths to gasp breaths of me–Debbie: a person, a woman, an individual. My midlife awakening.

A favorite quotation of mine is from Eleanor Roosevelt, “No one can make you feel inferior without your permission.” I became angry with me for allowing my life, me, to become irrelevant second to the needs of others, living to please, unfaithful to myself. A revelation: The cost of ‘presumed’ security was too high.

I had willingly laid my life on a sacrificial altar. By choice I reclaimed my life. I had companions: consuming fear, no plan, unresolved pain, & my health issues. I also had my faith, determination, and prayer.

I spent a year of gut-wrenching resolution, still work on issues. I do live with a loaded gun at my head. SPS has an itchy trigger finger.

I lived so many years within my roles and as a career patient, I had (am) learning who Debbie is. Painful, exhilarating, uncertain, exciting–I am reacquainting myself with me, liking who I am and the person I am becoming. I have a name–Debbie.

I have a song–my life. I am the only one who can sing it. I have dreams, yet to be disclosed goals. A promising future entices with the fears of my reality but life is lived forward…”in spite of.”

Copyright © 2011

A song that resonates.

jean_victor_balin_double_croche (1)
I Got A Name

A Month Of Memories

June 24, 2011


“Life gives us brief moments with another…but sometimes in those brief moment we get memories that last a life time…” ~Unknown

I made it! My first solo road trip to surprise Mom for Mother’s Day. May, 2011 – a month of memories.

Hanging out at Mom’s for a couple of weeks, we talked, watched Dancing With The Stars, talked, shopped, ate out, talked, lounged, took walks, worked in Mom’s doctor appointments…and talked–serious conversations, vents, reminiscing, woman-to-woman sharing, & laughing.

Not restrained by time, we went on an impromptu road trip. Driving at whim, we stopped frequently, enjoyed the scenery, traveled through the Blue Ridge Mountains, visited family, had moments of companionable silence, lost in thought to the hum of tires on the freeway and an occasional CD. Without an itinerary, we shared a motel room at different stops as desired.

Typical women, we both over-packed clothing, but with our conjoined medical supplies/medications/equipment, I thought a white pharmaceutical delivery van would have been a more suitable mode of transportation. Each stop required getting a luggage carrier to load with an oxygen machine, diabetic supplies, our individual rolling totes with prescriptions, a breathalyzer machine, cooler with insulin, along with a change of clothes and pajamas–Just to haul it all out and repack the car the next day.

Without jumping on the beds, we had slumber parties in the motel rooms. I resorted to little girl mode, crawling into bed with Mom one morning to snuggle. The continental breakfasts! We stuffed ourselves on eggs, biscuits and gravy, pastries, and juice out of nutritional guilt.

We enjoyed more shopping, eating out, sharing dessert, (Bob Evan’s strawberry pie!), lounging in pajamas until noon with coffee and more talking, movies, mother/daughter pedicures, Memorial Day at the ocean, and a boat ride.

Mom has a fear of water. She would have learned how to swim if getting in the pool wasn’t a necessity. “I am taking you for a boat ride, ” I informed her with my childlike orneriness and anticipation.

“On the water?” she responded in dismay.

I had to laugh. “No, Mom. I am going to take you to the mall and see what a quarter will buy. I will wave as you go around.” After I had my fun, I promised her she would enjoy it.

An afternoon meandering at the Jacksonville Landing, a lunch of chicken wings and another dessert, we took the water taxi. Mom really enjoyed it. I enjoyed her.

We had an amazing month of being two girls on an “Excellent Adventure.” When I started my solo drive, it was with the intention of spending a quality and quantity of time with Mom, just the two of us. Living the experience was better than imagining it.

Until next time…I have been hearing about a zip line over a pool of alligators?

Make memories with those you love, don’t miss the boat.

Copyright © 2011

Here Comes The Sun

March 4, 2011

“Those who bring sunshine to the lives of others cannot keep it from themselves.” ~James Matthew Barrie

I live with chronic illness. Anyone living with a chronic condition knows the physical discomfort, limitations, and emotional expense it takes every single day. If I let it go unchecked, I drown in a self-absorbed preoccupation with the popular trio of me, myself, and I. It is easy to see just inside your own box and become oblivious to the pain of others. One of the best things I do for myself is to give to others. How? What? Why?

My heart is unaffected. I can love, share understanding, listen. I have been in public and see someone who is obviously having a bad day. A genuine smile and kind word go a long way to brighten their day and mine.

I turn off my SPS saga and listen to the problems/worries/fears of others. In listening and offering compassion, advice, and friendship to one in need gives me a boost of appreciation for the good things in my life. I rediscover my worth as a person who can give, not just take.

A member of my sunday school class had lost a loved one. I signed up to take a meal. A bucket of chicken and a couple of sides can go a long way to let a family know you care and ease things for them during a rough time of grief.

My church offers mentoring programs for children: spending time with a special needs child, reading, or planning class parties.

Nursing homes welcome volunteers to visit with the residents, just talk. The residents love it and the time I did that, I was richly rewarded with love and a firsthand account of historical events. Fascinating.

It only takes a caring heart and time to chase away the blues. Here comes the sun!

Copyright © 2011

Hit & Run

March 4, 2011

“A warrior takes responsibility for his acts, for the most trivial of acts. An average man acts out his thoughts, and never takes responsibility for what he does.” ~Carlos Castaneda

Tuesday evening was a fun get-together with friends for pizza. It is liberating and healing to laugh and socialize in a ‘normal’ setting–especially if pizza is involved. I talked a friend into splitting a sinfully decadent chocolate dessert called ‘Chocolate Temptation.’ (Worth every fat gram and carb!)

The first to leave our party came abruptly back into the pizza place–an eye witness to a hit & run to a parked vehicle in the parking lot which happened to be mine! She was a good witness–getting the man’s phone number and name from the counter employee as he was a pickup order. Apparently he was fashionably coordinated in red crocks with a matching red shirt.

I can tell I am getting old. The responding officer looked more like a cub scout than a policeman, but he was eye candy. Investigating the damage, my rear tail light lay in splinters on the asphalt, grooved punch in the bumper, and a silver trim something lay in solitary twisted carnage in the dimly-lit crime scene.

I guess I have been fighting serious health issues for so long, I felt nothing looking at the broken shards littering the ground–knowing my car can be repaired. My broken health is an ugly duct-taped temporary medication repair of questionable efficiency. My body is totaled. Engaged in a daily battle with Stiff Person Syndrome, I need to have the mindset of a warrior. Life priorities refocus with clarity–important and trivial, permanent and temporary.

Outside of his garrish attire, Mr. Red Crocs is an irresponsible and average guy. I wish SPS would take a lesson from our pizza-toting flight perp, don some red crocs and go on the lam. No chase would ensue.

Copyright © 2011

I Don’t Do Mornings

November 17, 2010

“If people were meant to pop out of bed, we’d all sleep in toasters.” ~Garfield

“Pre” SPS, I would wake up at 5:00 AM, shower, make my bed and lunch, arouse a sleepy and grouchy toddler, dress her and make her bed while the commotion awakened her older brother to get ready for school. Then–a dash to the babysitter, a prayer for no train at the railroad crossing, and clock in at my usual two minutes before the 7:00 deadline–early for work. One of my friends greeted me one morning with, “How can you always be so perky so early in the morning?”

Well…I still wake up at 5-6:00 AM, mentally. My SPS body is indifferent to the adage “the early bird gets the worm.” Frankly, my body does not care if there are leftover worms.

I work on my morning warm-up which is feet on the floor, body remaining vertical en route to my first bathroom trip of the day–without event. Morning meds follow coupled with a quiet time to allow for peak efficacy…turtle pace without spasms.

Morning appointments can throw my routine into an SPS free-for-all tailspin. Locked muscles, back ripples, and increasing angst over making it on time make clock-watching seem like a death row midnight vigil. Mentally lighting my oomph candle, I chant, “Free Debbie!”

I had my infusion yesterday morning. It has to be morning because an infusion is a several hour process. I woke up feeling well, but the dreaded ‘get up and go’ kicked in my symptoms as I allowed myself four hours to prepare for my appointment. I showered the night before. Hair was just brushed and makeup was minimally applied. I managed my clothes, but shoes were an obstacle. I allowed myself a couple of 15-minute breaks to calm excited muscles as I chugged 3-4 bottles of water in preparation for my infusion.

Leaving an hour early, my body trembled slightly as I left pulling my food, drinks, reading materials, purse, and glucometer in a surrogate walker disguised as a computer case with my hiking pole in the other hand. My body jerked slightly as I got my gear and rear into the car.

Listening to an oldie station, my body settled as the hard part was temporarily over until I arrived at the parking garage. Luck was with me yesterday. A handicapped parking space three over from the door and elevators! (Available handicapped parking spots at hospitals are for another post.)

My veins were pumped. The IV was easily started an hour after my appointment, but my infusion went without a hitch. As I was released, my body was in a totally different temperment than when I arrived–it co-operated. It was afternoon. Like Garfield, I don’t do mornings.

Graphics Hunt

Copyright © 2010

The Love Of A Younger Man

“You may only be one person to the world, but you may also be the world to one person.” ~Unknown

His hands gently cup my face as he looks into my eyes, then softly kisses my lips. Complete acceptance of me in spite of my illnesses and my disability, asking nothing of me but to be loved in return. Hugging me in a tight squeeze, he whispers in my ear, “I love you, Grandma.”

I spent a magical week with my six-year-old grandson. Broken seashells on the beach, the wonder of seagulls, squeals of laughter at incoming surf, Cinnamon Toast Crunch, a swamp tour, alligators, shared bowls of popcorn, Lego creations, a movie date at McDonalds followed with Alice In Wonderland – 3D.

Wanting to cuddle and sleep with me at night, his sprinting thoughts were voiced in excited chatter and questions…endless questions, fired with machine gun velocity. What does “blink of an eye” mean? What is traffic?

Why do you use a cane? What is insulin? Does it make you better? Does it hurt? I answer his genuine concerns with honesty. Snuggling close, I feel his love for me and express my love for him.

What is a blink of an eye? This special week with you. Does it hurt? Yes.

Copyright © 2010

My Colonoscopy – (Procedure) Part 2

“All’s well that ends well.” ~Unknown~

Several people prepped me for my colonoscopy with tales, (interesting pun), of orbit-blasting day before colon cleansing as being the worst part of the ‘procedure.’ (Procedure emphasized with an ominous hush.)

The day before my ‘procedure’, I stopped at the store for my intestinal purge supplies while selecting from a severely limited list of food choices from the clear diet menu. I decided against the beef bouillon jello, jiggles as it moos.

Looking for the listed powdered laxative to mix in a Gatorade cocktail for my evening date with the bathroom, a female customer nabbed one of the two shelved bottles I needed. In a parody of a Black Friday sale, I grabbed the remaining bottle and consulted pharmacy…again. He had my second bottle behind the counter.

Getting my mojo going (?!?), I bought some magazines at the checkout, keeping our bathroom library current. I was prepared to prepare…grazing on Jello as I watched the clock for the appointed time to drink and be merry, sans eat.

I waited, and I waited. Finally the purge began to work, but it was not with the blasting urgency described by my talebearers. Toilet occupancy wasn’t wasted time. I read. I learned how to make a decorative snowman from packing peanuts. I kept gravitating to the Christmas recipes, appetizing yummies decadently portrayed in the magazines I had bought…torture when you are food-deprived.

Fasting was the most difficult part of the preparation for me. When I asked, I was informed it could not be considered a religious fast.

I arrive at the clinic, purged and starved. The receptionist asked me, in the now familiar hushed tone, if I was there for my ‘procedure.'” Endosocopy and gastroenterology are visibly displayed outside and inside the clinic. What am I missing? Obviously I am not here for teeth cleaning.

Entering the waiting room, I am handed papers at another window with the same whispered seriousness, “for your ‘procedure.'” Joking with the medical assistant about the espionage approach with the term ‘procedure,’ she explains some people are sensitive to privacy. I’m thinking, “Colonoscopy, privacy, sensitivity…better get over it, fast.”

An airport-type arrival/departure ticker displays the ten ‘procedural’ physicians and if they are on time or delayed. My doctor is on a 30-minute delay pushing back my anticipated meal. The waiting room filled with the privacy sensitive have the same check-in paper work as I do. Secret’s out.

My flight has arrived as my name is finally called. The ‘procedure’ holding area is filled with men and women laying on gurneys in tiny cubicles wearing hospital gowns (obvious slit in back), the one ultra-thin issued white blanket, connected to IV poles. Can we say colonoscopy yet?

Dressed down and hooked up, I am wheeled to the ‘procedure’ room, given something in my IV much better than the laxative laced Gatorade the night before…and I am awakened a few minutes later…

As I am perimenopausal, diabetic, and have a rare disorder, my medical test results rate me as remedial patient. I was ecstatic to have aced my colonoscopy…a ‘normal’ healthy colon with a 4.0! I am not scheduled for another one for 10 years. I just have to live that long.

A Cracker Barrel celebration of chicken and dumplings with three sides followed.  I was actually given pictures of my perfect colon.  Scrapbook or frame?

On a serious note: Having a rare disorder, Stiff Person Syndrome and diabetes, my social calendar involves dinner after appointments. It is hard to work in routine screenings, but important. SPS can make routine screenings a challenge.

The challenge for my colonoscopy was the sedation dangers associated with the medications used to treat SPS. I emailed information to my doctor prior. My doctor, anesthesiologist, and I discussed how SPS specifically affects me and made some strategic ‘just in case’ plans. Thankfully, everything went very well.

I did not dread having a colonoscopy. I dreaded the possible result…colon cancer. Colonoscopies have evolved, in my opinion, into not that big of a deal. My peace of mind was worth it.

Now, I will have to explore the Freudian aspect of why I ate at a ‘Cracker’ Barrel after a colonoscopy? …I mean…procedure.

Copyright © 2009

Recovering Support Group Addict


“The Internet is so big, so powerful and so pointless that for some people it is a complete substitute for life.”
~Andrew Brown~

December, 1999. Our first computer. I could hear an angelic choir rejoice as the PC tower emerged from the Gateway box. Disabled with a rare neurological disorder, Internet Explorer became my Starship Enterprise. With warp speed, my keyboard transported me out of disability’s isolation into an uncharted universe of the living.

Hovering in cyberspace was a small support community of individuals also diagnosed with SPS. Bonding with this obscure SPS colony, I shared experiences, laughter, tears, and encouragement with others.

As the years passed, Internet Explorer navigated several others to our close-knit group. The majority fit right in, expanding our community with further experiences, understanding, and friendship. Then the ‘Cling-Ons’ started to infiltrate…self-absorbed, angry, victimized, needy attention-seekers. Their forum volume of continual problem finding, with dismissal of solutions, darkened our once uplifting support group under a cloud of self-pitying rants of negativity.

Negativity created a quagmire of group depression and dissension. Struggling through the mucky rancor, I felt their negativity begin to ooze through my thoughts. For my emotional well-being, I took a hiatus from the group.

It was a jolt to realize how much I had limited myself through extensive support group interaction, my only social outlet. Addicted to daily logging in, I allowed the group’s drama to consume my thoughts. I felt a personal responsibility to lift those drowning in the ooze of their own inflicted misery. I had stopped growing, stopped living.

During my leave, I dusted off my waylaid goals, finding unexpected success in some completed pursuits. Venturing out ‘in spite of’ my physical limitations, I rediscovered a social life, making friends and enjoying activities.

I rediscovered my original purpose for participating in a support group…to share relevant disability issues in a mutual outreach of friendship and hope. Back to a basic coping tool…balance. I log on once a day to read and respond. I do not own responsibility for those who choose to wallow in the muck of defeat, despair, or gloom at the expense of others and of me. Encourage, not commiserate, is my support group motto.

My name is Debbie and I am a recovering support group addict.

“Avoid loud and aggressive persons;
they are vexations to the spirit…”
~Desiderata~

Desiderata

Copyright © 2009

Good Morning Vietnam!

“Life is a rollercoaster. Try to eat a light lunch.”
~David A.Schmaltz~

“Good Morning Vietnam!” Opening my eyes, I greet myself with the same irreverent enthusiasm of Robin William’s DJ role in a controversial war zone. Living with disability is waking every day to a personal war…my life under siege by a relentless neurological disorder.

Through various avenues, I communicate with others with my diagnosis of Stiff Person Syndrome. Shuffling to the computer, I mentally inventory my physical status for the day as I read from others. As I read, I envision a medevac helicopter bringing in the wounded, me or my comrades? The MASH theme song, Suicide Is Painless appropriately plays in my imagination.

Though feared, death is easy. Living is hard. Finding my own purpose, joy, happiness, fulfillment, and strength for the day, I work on having reserves to share with another…encouragement…irreverent DJ humor to give a smile…a word of hope?

I envision a Vietnam Marine, dusty, scared, searching, homesick. Crouched in the dirt, this weary young soldier chews on a pencil eraser as he struggles to fill the glare of blank white paper with an uplifting letter for those he loves.

Nostalgia for my ‘pre’ diagnostic days fills me with longing as I search for life’s meaning in the chaos of my disability. Staring at my monitor, I struggle for truthful words to inspire those I care about. Life is hard, but still worth living.

“As long as you live, keep learning how to live.” ~Seneca~

Copyright © 2009