Gymspastics - I've Got A Secret

"So I said to the gym instructor: 'Can you teach me to do the splits?' He said: 'How flexible are you?' I said: I can't make Tuesdays.'" ~Tim Vine

Two years ago, my physical ability started to slightly decline again with increased angst. I reinstated my 'out there' walking, armed with two hiking poles for balance creating a normal illusion of incorporating an upper body workout with walking. Sometimes I would struggle-shuffle only to kick-butt power walk at others depending on syndrome whim.

I joined a gym. Undetected ripples and tightened back muscles were undetected by other grunting patrons as I willed myself to do a very slow 3-speed mile on the elliptical. As an obvious gym newbie, nobody knew I am neurologically challenged. SPS, I've got a secret.

Two years later, because of hard work, determination and dedication, I can kick out an impressive 3-mile on the elliptical to the questioning awe of two young women 20 years younger than me. Unnoticed by them are the wheeled backpack with contracted hiking pole I drag around the gym as a surrogate walker--my secret.

I manage some light weight machines after concentrated focus to cross aisles toting my surrogate walker. I am complimented on my toned muscles, watched with envy or appreciation from people who do not know the extra effort required of me, my secret.

I work my core. Anything involving my back muscles is a no-go. The forward crunch is a favorite stomach-tightening, back-stretching combo for me. The crossover to the arm weights is an obstacle. Breathe, focus, step. My secret is safe.

These are my good days. Not part of paid membership, my gymspatics...

Two days after my last infusion, I could not leave my car to enter the gym. (Infusion hangover.) My back was rigid, tightening more with contemplation. My workout was a forfeit, one of several. Sugar plummets have also interrupted sessions when SPS was behaving, a double whammy.

Having a good day on the elliptical, I got off to have my body do a lock-down where I could not take a step or let go of the treadmill in front of me. A kind man got off and asked me to sit while he continued his run across the aisle on a different machine.

Trying not to be intrusive, he kept asking me if I was alright. I had a death grip on the treadmill as I chomped some medication. My body was quaking in continual mini spasms. Syndrome fear became a hairball in my throat I could not cough up. After waiting for my meds to kick in, I took my syndrome cue to leave.

Often after an impressive workout, I may need an escort to cross the road with me to my car. Many nice people are helpful, never invading my privacy. My SPS secret remains safe. I am normal, just having some balance issues after working out. Easily understood by gym regulars.

Why do I do it? It feels so good when my body has those periods of remembering how to work with normal efficiency. For a time I can almost pretend I do not have SPS. Through the window, I watch the brisk and fluid beauty of people walking through the parking lot as I do my suspended leg lifts. I marvel at the miracle of movement, grieve for my losses, deeply appreciate my sporadic abilities.

The severity of my symptoms following the years after my diagnosis are a continual haunting in my mind. I do not take anything for granted. Today can change in a second. Getting to where I am now is euphoric, even within the confines of SPS, my gymspastic secret.

Exercise helps my SPS, is a definite help for my diabetes, and great for my emotional well-being. I enjoy my workouts when my physical planets align, not a secret.

I like the following quotation because it fits for me.

“The resistance that you fight physically in the gym and the resistance that you fight in life can only build a strong character.” ~Arnold Schwarzenegger

(Arnold exercised poor judgement resisting in life?)

**For my personal safety, one of the gym's employees is aware of my condition and where in my surrogate I keep my meds and sugar tablets. My cell phone has emergency contact information in it.

Copyright © 2012

Introducing Myself?

"Do you think I could buy back my introduction to you?" ~Groucho Marx

"This above all; to thine own self be true."
~William Shakespeare



Sitting at a luncheon table with a new group from church, I was asked, "What do you do?" (Try to stay upright, appear normal, and support the medical community?) In a brief moment of panic I replied, "I have a back problem and am retired." The sometimes misused "bad back" immediately gives a questionable first impression. My answer was not a topic of substance to build a conversation and was dismissed.

During the last two years, I get out more, mingle with the socially-accepted well or healthy. For years my social circle was limited to a few close friends, family, church, and the SPS community. I did not need an introduction involving SPS. Angry at myself at my lame response, I went home and wondered how do I introduce myself in various social situations?

It is difficult to live with the 24/7 consumption of my physical boundaries dependent on managing my medication, sugar levels, and ability for the day. The rarity of Stiff Person Syndrome is challenging to explain to those close to me, but to a newly introduced individual, it is an uncomfortable struggle possibly leading to an undesired first impression. There is so much more to me than being a career patient. I dislike conversation to be dominated about SPS but it is a part of my life.

Because of having SPS, I became an advocate, web mistress, and first-time published author. I have met so many amazing people and participated in a research study. To deny having SPS is to deny the wonderful people in my life and the accomplishments of my life with the syndrome. To deny SPS is to deny what God has done with my life. SPS is not my identity, but it is a major controlling factor in my life.

My friend wondered at my lame response. Troubled, I called to discuss it over the phone after lunch. I received some great feedback. For a casual one-time encounter if I ask assistance to walk across the parking lot, "I have back issues that compromise my balance," is simple and easily understood.

With individuals I will develop some sort of social network over time, I will succinctly say, "I was diagnosed with a rare neurological disorder in 1994," followed by a brief synopsis if asked which disorder. If the individual is interested and questions further, I can give them one of my business cards that has my website with an explanation of Stiff Person Syndrome with some of my personal experiences in a journal.

Conversation will not be dominated by SPS, giving me the freedom to discuss my many interests and to focus on others.

I am normal in a subterranean sense. I live underground with the physically-challenged and chronically-ill, the unseen. Planned respites give me a few moments topside where I am a "poser," blending in with the normal. Both levels bless my life.

SPS - "one in a million"...me. I gotta be me--all of me. (Keeping it real.) Let me introduce myself.

"I've always tried to stay true to my authentic self." ~Katie Couric

Copyright © 2012