The story of Debbie
February 18, 1994. It was the day four – five years of elusive and progressive symptoms finally captured my entire body into a rigid, trembling immoveable mass. Frightened to my soul and in tears, my friend and co-worker, Deb, helped me to my car. I was only 36 but life, and me as I knew myself, were dramtically changed with a diagnostic search-ending-quest in September at a state teaching hospital.
“Stiffman Syndrome,” said the renowned diagnostic neurologist. The wind was knocked from my lungs and the air sucked out of the room. Such a frivolous name. Do I laugh, cry, or die? “It is very rare. One in a million.”
1994 was during an era before every home had a computer. Information on my diagnosis was a frugal yield of a couple of columns in archaic medical journals. A few years later, to be ‘politcally correct,’ the syndrome was renamed Stiff Person Syndrome. It did not make a difference for me or the other few hundred in the world with the syndrome.
Stiff Person Syndrome, SPS, is an autoimmune disorder of the nervous system. My body’s neuroinhibitory system is always ‘on’ or firing, even at rest. This creates perception (sight, touch, emotion) overload and volitional movement an impossibility with agonist and protagonist muscles working simultaneously resulting in body twisting spasms, uncontrollable rigidity, and predisposing me to unprotected falls. SPS isn’t content to stand on its own. Like a typical bully, other autoimmune disorders often accompany the diagnosis. I have insulin-dependent diabetes and was recently diagnosed with Hashimoto’s Thyroiditis…my ‘axis of evil.’ More detailed medical information about SPS is available through my blog on my website link.
God has blessed me through this difficult journey. I do respond to medication and treatment, living a quality of life within physical boundaries. Benefit is not a cure. My greatest wish today would be able to walk outside my home unaided and with carefree abandon. Every day, every moment, every proposed activity takes careful planning and then it is up to the whim of my symptoms for that day whether it is a doable.
My inborn determination and quirky sense of humor have served me well in coping and living forward with SPS. Faith has been my cornerstone. An outreach to others has become a reason. Life, for anyone, is a journey of living, growng, and changing. And so it is with me…”in spite of.”
Stiff Person Syndrome ~ Living Forward