Stiff Person Syndrome ~ Living Forward. I have lived 28+ years with SPS. Informative links, media stories, my personal account. "awareness, knowledge, hope" <title/> <html> <title>Stiff Person Syndrome Living Forward I have lived with SPS for 25+ years. I share links to SPS info, helpful resources. & blog about my life. Living forward.


​awareness, knowledge, hope




“The phoenix hope, can wing her way through the desert skies, and still defying fortune's spite; revive from ashes and rise.”

―Miguel de Cervantes
Mystical and rare, the mythological phoenix is a revered symbolism of rebirth, dying in a nest of flames to soar from the ashes of ruin.

September, 2011

This month marks the 15th anniversay of my SPS diagnosis, following four-five years of symptoms.  For twenty-one years I have lived with Stiff Person Syndrome -- triumphed, failed, loved, lost, cried, laughed, persevered ... "in spite of."

Since my diagnosis, I have sustained injuries from falls, a set of broken ribs, a radial nerve injury to my left arm, and a near respiratory arrest.  Prescription medications and booster infusions of IVIg have lessened the severity of body spasms and hip/torso rigidity to a quality of life improvement, a 'tenative stability.'

To me, a 'tenative stability' would be a margin of four lines on the top half of a page of thirty.  I fluctuate but primarily stay within my four lines -- good days and bad days.  Some days, a trigger will precipitate an episode of spasm, immobility, or painful contraction for me.  SPS thrills and spills.

I am very sensitive to unknown situations, hurry, or stress (good and bad).  Agoraphobia (SPS-induced anxiety over open spaces), continues to be a throat closing paranoia for me.  I utilize some tactical maneuvers or mental distractions that may help in some situations.

I try to preplan activities, have acquired some diversionary skills, realize my limitations, and give myself needed breaks.  It has been crucial to cut unnecessary negatives from my life.  As much as possible, I try to correlate my physical pursuits with medication peaks.

Upredictable episodes of spasm or rigidity can still compromise my mobility within the familiarity of my home.  Pain levels ebb and flow like a tide.  The frequency and severity of my symptoms have lessened significantly with a beneficial treatment regimen, but when an episode occurs, it is a somber reminder of how far I have come and where I could possibly go.

Coping.  Every day involves coping.  After sorting through my diagnostic grief, I thought I had come to terms with all the emotional issues of a life-altering, disabling condition.  Every day as I evolve, life around me evolves, people evolve, and my SPS evolves.  Coping is as much a part of my daily syndrome maintenance as my medications ... my daily existance.

Moving out west gave me anonymity at the price of loneliness.  I lost more pieces of me: friends, social outlets, hometown familiarity.  I found an online support group.  For several years, a few special people became my friends, mentors, and social life.   I will always carry them in my heart.

My beautiful daughter was growing into her life.  My former husband had his.  I had Windows XP, appropriately named, my window to the world.  A cyber hermit, the sound of the television was background noise to muffle the oppressive silence interrupted by the rythmic click of my keyboard.  My life was vicariously shared with several unknown entities through a computer screen with SPS as the unifying focus.

As with many many marriages, my former husband and I disconnected.  He planned our future based on his dreams without consideration for what I wanted or medically needed.  I had demeaned myself to become 'indebted' out of a sense of guilt and lack of self-worth ... 'damaged goods.'  I sacrificed me.

I struggled against the blackness of depression for the possession of my very soul.  I had reached a point where I wanted a real life for me, whatever it could be with disability.  I needed to matter.  An SPS guru, cyber-socialite, frequent flyer patient, dutiful wife, family roles ... Where was Debbie?" 

Marriage counseling was a futile effort.  The emotional stress triggered a near respiratory arrest for me -- a defining moment.  The marriage ended.

My daughter and I moved into a condo, our girl pad.  That time was a respite of reflection for me.  What did I envision for the rest of my life?  I wanted to be defined as a woman, an individual, not just an extension of another person, SPS groupie, or medical rarity.  Midlife, my encore.  I wanted to be Debbie.

Unknown at the time, the move out west was with the sacrifice of knowledgeable healthcare.  The remote area in which we had lived did not have proximal medical resources needed for specialized SPS/diabetes care, especially as I was approaching midlife as a single woman.  Another pivotal moment:  While in spasm, crawling across a cold sidewalk to get in my car, I realized I knew no one outside of my daughter or mom (with her own health issues), to assist me during a medical crisis.  In 2008, I moved to the East Coast after meeting a knowledgeable SPS neurologist.  Again, SPS moved with me.

Another reassessing, redefining, reawakening, ressurection in my life. 

​Dear Lord,

Give me a few friends
who will love me for what I am,
and keep ever burning
before my vagrant steps
the kindly light of hope...
And though I come not within sight
of the castle of my dreams,
teach me to be thankful for life,
and for time's olden memories
that are good and sweet.
And may the evening's twilight
find me gentle still.

~Celtic Prayer~


"Change is the constant, the signal for rebirth, the egg of the phoenix."
~Christina Baldwin


February, 2018

An update is in progress.  Thank you for your patience.