The Legend of the Phoenix

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. 

My initial whispers of syndrome symptoms began almost 20 years ago. In September of 1994, I was diagnosed with Stiff Person Syndrome.  This month marks the 15th anniversary of my SPS diagnosis.  For the last 15 years, I have lived with Stiff Person Syndrome...triumphed, failed, loved, lost, persevered, cried, laughed..."in spite of."

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

To me, 'tentative stability' would be a margin of four lines on a page of 30.  I fluctuate but stay between 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, and stress.  Agoraphobia, (SPS-induced anxiety of open spaces.), continues to be a throat-closing paranoia for me.  I utilize some tactical maneuvers that help with my physical symptoms 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.   

Unpredictable episodes of spasm and 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 significantly lessened with a beneficial treatment regimen, but when an SPS episode occurs, it is a somber reminder of how far I have come and where I could possibly go.

Coping.  Every waking day involves coping.  After sorting through my diagnostic fear and grief, I believed I had coped with all the emotional issues of a life-altering disabling condition with my initial acceptance.  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 to Colorado gave me anonymity at the price of loneliness.  I lost more pieces of me...friends, social outlets, hometown familiarity.  I discovered an online support group.  For several years, a very special group of people became my friends, mentors, and only social outlet.  I will always carry them in my heart.

My beautiful daughter was growing into her own 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 oppressive silence, interrupted by the rhythmic click of my keyboard.  My entire life was vicariously shared with unknown entities through a computer screen with SPS the central focus.  

As with many marriages, my former husband and I had slowly disconnected through the years.  He selfishly planned our future based on his dreams, but without consideration with 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.'  In compensation, I sacrificed me to him.

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

Counseling was a futile effort.  The emotional stress triggered a near respiratory arrest.  It was a defining moment for me.  The marriage ended.

My daughter and I moved into a small condo, our girl pad.  That time was a respite of healing and 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.  

The move to Colorado was with the sacrifice of my healthcare.  The remote area in which we had lived did not have the medical resources I needed for specialized SPS/diabetes care, especially with me approaching midlife. In 2008, I relocated to the East Coast.  Again, SPS moved with me.

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

As I addressed the concerns of my children, I will share my sentiment with you.  "I would rather experience a day of wonderful than to never have experienced it at all."  My life is just a season.  I choose to make it Christmas.

I am making new friends and have reconnected with old ones.  Recently, I attended a ladies' get-together, a first in years.  Unsuccessfully squelching my agoraphobia, I was a rigid trembling mess clutching a useless walking stick.  As one of the ladies passed by, I asked to 'hitch a ride' on her arm.  

I attempt working on some long-denied personal goals with some promising results.  Staying focused can be a problem.

What I have learned in the last 15 years...the good, the bad, and the ugly.

The Ugly...

SPS is for life.  There is no a cure, just hopeful benefit from medication/treatment.  Stiff Person Syndrome can be a vicious disorder.  There are spectrums of severity.  To date, I have personally met 21 individuals with the syndrome.  Some function very well within varied limitations.  There are those who suffer the full wrath of SPS.  And some have died.  They are my inspiration.

The Bad...

It seems normal life interrupts the endless physician appointments and syndrome maintenance.  Pain hurts.  Limitations hurt more.  Insurance red-tape (If fortunate to have coverage.) requires time, patience, a shot of whiskey, and Preparation H.  Getting over myself.  Suffering has other names besides SPS.  People will still be self-absorbed, rude, or indifferent, even those who are disabled.  Social ignorance and apathy are pandemic. My disability does not require others to have compassion and understanding of me nor excuses me to lash out in anger.  To receive understanding and awareness, I must be willing to give it.  There are days the world is too heavy.  Having SPS does not exempt me from life's hardships.   

The Good...

I still enjoy and love my family.  Humor is a healthy affliction.  I laugh often.  An occasional day of tears helps wash the pain from my heart.  I am my best advocate. (Saved my behind a few times.)  I read, learn, and understand Stiff Person Syndrome as it relates to me, then pay it forward to others.  Within my disabled bonds, I discover untapped resources within me.  My faith is deeper.  My life is committed.  I appreciate more, see miracles in simple.  While hurdling/dodging SPS challenges, the syndrome has challenged me to be my best, to grow.   I reach out, look up, and continually try.  Success is effort.  Accomplishment is perseverance.  Life is still worth living...as long as I breathe.

My Story-Part III -- Coming in September, 2019 
Egg Of The Phoenix

“Change is the constant, the signal for rebirth, the egg of the phoenix”
~Christina Baldwin~

 "A bird does not sing because it has an answer. It sings because it has a song."
~Chinese Proverb~