“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