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! 


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


Hugs – One Size Fits All

December 10, 2010

“You can’t wrap love in a box, but you can wrap a person in a hug.”
~Author Unknown

I have always heard the expression “a country mile” used to express a long distance of nothing. Having hyper stimulus-sensitive triggers of SPS, I have serious issues with “a city block.”

Several days ago, I had an appointment in a busy area of the city. Timing my appointment with peak medication efficacy, I had to “only” go two blocks and cross two streets. (I hear the Jaws theme as I type.)

In my previous entry, Frogger, I equate my perception of Frogger with getting from point A to B. Well, this day involved real street crossing. Without Frogger’s speed, I boinged across street #1 with my two gait aids, a hiking pole and a roll-along case. Street #2 had a very sweet lady with a walker cross the street beside me. (Comrades in arms.)

It is effortless to get caught up in my own dramas. After crossing the second street, I noticed a couple standing by a garbage can and bench. (Metro decor combo.) People briskly passed as this woman was sobbing with pain from her soul. I stopped.

I approached her with a personal understanding of being passed by while in pain. I asked, “Maam, are you alright? Is there anything I can do?” On an impulse, I pulled her close to me in an embrace and she hugged me back crying harder.

I told her I would pray for her. Unexpectedly, she introduced me to her guy, DJ, and her name was Diane. She asked for prayer right then, the three of us together. So as people continued to pass, Diane held DJ’s hand as she and I held each other in a simple shared prayer.

Diane looked up to the sky and said, “Thank you, Lord, for reminding me you are there.” She told me I was an angel. No, she was the blessing to me.

SPS sucks. Life is challenged. I hurt physically and emotionally. But…there are so many others dealing with their own struggles. Because of what I live, I have no excuse to be ‘one who passes by.’ Giving a simple hug gave me so much more in return. I froggered back to my car wrapped in a warm heart, without a ‘splat.’

Copyright © 2010

Gator & Boy in Wheelchair

I love Tim Tebow, the University of Florida’s quarterback, not because I am a football fan, but because of what he stands for. A young man with deep spiritual convictions, Tim lives what he believes. Athletically gifted, he is a hero to college football enthusiasts…especially to Boomer, a seven-year-old boy with cerebral palsy. The following story touched my heart.

Huge Gator fan gets experience of a lifetime as he meets his hero

“True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost.” ~Arthur Ashe~

I think I have just become a Gator fan. Boomer’s story recruited me.

45 Things To Remember

Having SPS has robbed me. I am disabled, a dependent on healthcare/medications, and have compromised mobility. While I understandably have my moments/days, SPS cannot control my thoughts unless I allow it. Disability has not robbed me of life, just altered it. 😉

I love the following list and wish to share it with you…steroids for the soul. 😉


Written By Regina Brett, 90 years old, of The Plain Dealer, Cleveland,

“To celebrate growing older, I once wrote the 45 lessons life
taught me. It is the most-requested column I’ve ever written.”

My odometer rolled over to 90 in August, so here is the column
once more:

1. Life isn’t fair, but it’s still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won’t take care of you when you are sick. Your
friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don’t have to win every argument. Agree to disagree.

7. Cry with someone. It’s more healing than crying alone.

8. It’s OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won’t screw up the present.

12. It’s OK to let your children see you cry.

13. Don’t compare your life to others. You have no idea what
their journey is all about.

14. If a relationship has to be a secret, you shouldn’t be in

15. Everything can change in the blink of an eye. But don’t
worry; God never blinks.

16. Take a deep breath. It calms the mind.

17.. Get rid of anything that isn’t useful, beautiful or joyful.

18. Whatever doesn’t kill you really does make you stronger.

19. It’s never too late to have a happy childhood. But the
second one is up to you and no one else.

20. When it comes to going after what you love in life, don’t
take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy
lingerie. Don’t save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don’t wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words ‘In five
years, will this matter?’

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Don’t take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything
you did or didn’t do.

35. Don’t audit life. Show up and make the most of it now.

36. Growing old beats the alternative — dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone
else’s, we’d grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come.

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn’t tied with a bow, but it’s still a gift.”


A beautiful slideshow of this list:

Time and Life


I know some situations are sunami strength, but for those of us who can…carry an umbrella.

“Life isn’t about how to survive the storm, but how to dance in the rain.”

Mrs. Crabtree

“As I give thought to the matter, I find four causes for the apparent misery of old age: first, it withdraws us from active accomplishments; second, it renders the body less powerful; third, it deprives us of almost all forms of enjoyment; fourth, it stands not far from death.” ~Cicero~

Since diagnosed with a chronic neurological disorder, Stiff Person Syndrome, I walk with a shuffled gait, am sometimes slow, or completely immobile. Watching the effortless movements of others, I feel envy.

I watch the slow, deliberate shuffle of the elderly and I feel a kinship. As physical limitations are difficult for me to accept, I think about the parallels of getting old and disability. Does one grieve their physical losses with age? My opening quotation could easily define disability from chronic illness.

At the nursing home today, I saw Mrs. Crabtree. Smiling a broad genuine smile from her wheelchair, she asked me if I had seen her latest painting on the easel. I promised her I would look at it when we left.

Listening to the gospel music with the residents, Mrs Crabtree decided to join us. Fascinated, I studied her through the program. Wearing a loud print floral dress, the hem skimmed her feet, encased in very large athletic shoes. The thin material molded her ample frame, revealing a missing left breast.

Focused on her project, she meticulously crocheted tight, neat squares of lavender and green, her contribution to a group-effort baby blanket. Putting the squares away, capable hands of a few seconds earlier shook with the effort of gathering up her supplies. Busy, always busy, and interested in something. Painting, magic marker art, crocheting, puzzles and always upbeat and happy from her wheelchair vantage and nursing home confinement…not to mention her physical ails.

Mrs. Crabtree still accomplishes, selling her paintings, enthusiastically pursing interests and activities. She still finds immeasurable enjoyment in life, in spite of her physical limitations and living on life’s death row.

Unknowingly, she is an inspiration on how I can live with disability and chronic illness. I got to hug Mrs. Crabtree, checking out her latest painting as we left.

“None are so old as those who have outlived enthusiasm.” ~Henry David Thoreau~

Copyright © 2009

An Oak Without Limbs

“Fall seven times, stand up eight.” ~Japanese Proverb~

Nick is not only a great inspiration to me, from my woman’s perspective, he is a hunk. He is witty, fun, a motivational speaker, real estate developer, and he was born without arms or legs. His example encourages me to see beyond my own disabilities to reach my potential. Dream it, believe it, then do it.

Check out these other youtube videos about this extraordinary young man.

Nick Vujicic – Life Without Limbs

Nick Vujicic, No Arms, No Legs, No Worries! Part 1 of 3

Nick Vujicic, No Arms, No Legs, No Worries! Part 2 of 3

Nick Vujicic, No Arms, No Legs, No Worries! Part 3

The Impossible Dream

Man in the Arena

“It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat.”

Theodore Roosevelt

“Citizenship in a Republic,”
Speech at the Sorbonne, Paris, April 23, 1910

George Foreman, at the age of 45, defeated heavyweight champion Michael Moorer “against the odds.”