Life with Stiff Person Syndrome - deranged antibodies hijack my nervous system, casting me as the heroine in a heart-pulsating, action-packed reality thriller. Mundane normalcy takes on the adrenaline-surged challenges faced by Tom Cruise, aka Mr. Hunt, viewed at the end of this post in a 90-second movie trailer of Mission Impossible 2.
Unable to take part in a family rockwall climb a few years back, I sat and watched. In rapt appreciation, I noticed this very agile and limber young man free climb around the entire room, without a mishap. Gingerly grasping a new rock protrusion, he hesitated as he contemplated his next foothold in a simulation of rock climbing chess. Checkmate!
So many images resurrected in my mind of navigating my syndrome-captive body through the house, looking for a safe place for my foot, gauging a questionable security hold on the door ledge, sliding around the wall to the counter. SPS depleted my former limber agility and mental confidence. Syndrome perception distorted a single step-down as a deep ravine. Quaking with spasms and consuming fear, I "rock-climbed" every simple movement maneuver required during the early years of diagnosis, just going to the bathroom. Now?...though much better, there are those unpredictable days/moments.
The raspy SPS voice whispers in my ear, "Your mission, should you choose to take it, is to shower, dress, and get in your car to go to church. If you are captured or killed, I will disavow any knowledge of your action."
This particular morning, my syndrome-challenged body responds, "You've got to be kidding."
Gauging my footing, I step into the shower. A full-body spasm starts to build. I have a two-second window to nab some emergency meds, strategically laid on the back of the toilet, before I grab the soap dish handle as a white-knuckled handhold while I ride out the spasm on the tub floor. Gushing tub water fills my audio senses at my near fall. (Crumbling rock, hanging by a mere one-handed grasp.)
As the spasms subside, I carefully execute SPS handgrips with gingerly planned footholds to get out of the tub, dried and dressed. Past syndrome episodes come to mind of rock climbing through the house, scope, plan, step, grab, with the sweat of thought and exertion trickling down my back...a door jamb, knob, chair back...
Opening the front door for my going to church mission, I assess my body's current ability, canvass the terrain, tighten the grip on my gait aids, and plot a getting into the car maneuver.
All day...every day, SPS perception overload combined with physical limitations. My mission - living - if I choose to take it
.
"Well this is not mission difficult Mr Hunt, its mission impossible. Difficult should be a walk in the park for you."
Copyright © 2012
