“But I think we are seeing a resurgence of the graphic ghost story like “The Others,” “Devil’s Backbone” and “The Sixth Sense.” It is a return to more gothic atmospheric ghost storytelling.” ~Guillermo del Toro
I like the opening quotation to this post. Stiff Person Syndrome will always be a haunting for me. In my paranormal world of swirling syndrome spectres, I am always aware of the chilling presence following me every second uncertain of when/where/how an apparition will appear. I try to be a Ghost Buster.
After years of movement creating disabling symptoms of spasm and gut squelching terror, I had reached a ‘stability’ that allowed me to devise my own physical therapy. I know my body, symptoms, and triggers better than anyone else. My personalized therapy extended to my mental and emotional health as well. It is continual daily work to achieve and maintain my hard-earned improvement.
I took a trip to Colorado to visit family three summers ago. With my daughter packing her baby and gear, I backpacked necessary baby overflow necessities, my diabetic supplies with a death grip on two hiking poles as we trekked up to Devil’s Backbone. Having my daughter with me was having my own personal SPS navigation system. She knows my triggers, pausing at any potential threat to gauge my reaction — my support with this challenging endeavor, testing the benefit of my self-designed physical therapy.
While taking in the breathtaking openness of the scenery, my thoughts split, as they always do, into what is in obvious play to an inner stiff mindset. The winding trail leading to the rugged rock spine was an appropriate visual of the syndrome, aptly named Devil’s Backbone. My stiff thoughts could hear Charlie Daniels playing the fiddle to Devil Went Down To Georgia as background accompaniment.
As we crested the spiny outcropping, shade cooled while boulders seated us as we snacked, talked, and enjoyed the panoramic view through the arch. I shared a beautiful outing with my daughter and grandchild without syndrome drama, except for The Others playing in my mind.
I felt grateful, alive … normal.
© Debra A. Richardson
#StiffPersonSyndrome #raredisease #therapy #outdoors