Lost Time – Finding Me


Broken. Living years struggling with a defective body, my ‘normal’ life imploded around me, and finally, a broken spirit.  Darkness enveloped my being with an oppressive heaviness — defeat.  Emotionally, I collapsed under the weight.

Some small remaining spark of survival remained, igniting a will to live after years of yielding to apathetic depression.  I mattered.  I was alive.  I wanted a life.

After my Stiff Person Syndrome diagnosis, I immersed myself into marriage, my family, and others.  All of that was good for quite some time, but gradually through the years, I was living only for and through others.  I lost me and lost relevance.  It was time to nourish Debbie.

For many isolating years, I lived a virtual social life through my computer.  My children have always been my strongest support/reason; but they grew into their own adult lives.  I wanted, needed, to have ‘my’ life.  Finding a simple but nice apartment, I moved in by myself — my first solo pad in my entire life.  Well…not quite.  My diagnosis moved in with me.

Choosing to stay in my current locale, I had no one except my doctors.  Knowledgeable medical care was the lure that first drew me here.  Doctors familiar with Stiff Person Syndrome are as scarce as the disorder.  It is vital to my life to have good physicians.

My cozy little apartment I named, “My Healing Place.”  Getting involved in a Christian support group, I poured my soul in my journal handbook as I lay on the floor and sobbed years of pain-filled tears — a long overdue purging.

With my quirky creativity, I figured out ways to maneuver around my necessary places to be, asking for needed help when necessary, and dealt with syndrome episodes.  As a middle-age solo operative, this dumped on independence became empowering with achievement.

I began toting a weighted gym bag with one hand and hiking pole in another to access a gym to work on balance, strength, and flexibility, ‘in spite of’ curious stares.  SPS is always a formidable improv setting, creating some…interesting? situations.  Through the years (Yes, years.), my devised physical therapy has paid off.  However, though subdued, the syndrome still lurks in the shadows with surprise cameo appearances.

I loved the peaceful solitude of that little apartment.  Ate when I wanted, what I wanted, had control of the remote, only me to worry about.  Tranquility eased my physical symptoms.  I know the calm of my healing place helped me close the door on the pain/grief of so many losses in my life.  I looked toward my future with anticipation.

Joining in social settings, I enjoyed conversation with real people.  As time went on, I reconnected with old passions: outdoors, parks, picnics, camping and volunteering while discovering new loves: theatre, art, museums, and public speaking.  Living in isolation for so many years, I embrace the miracle and beauty of the simplest things while daring unknowns.  I have said, “Life is a buffet.  I want to sample many things.”

For two years, that apartment was my home.  One of my life mottos is “living forward.”  Like a child at Christmas, I am so busy opening up life’s gifts; I have taken a hiatus from my writing and syndrome outreach.  I am feeling the tug to become involved again, but not to the extent I was before.  I allowed it to become consuming.  I live with Stiff Person Syndrome, not for it.  Life is a challenge, but full, fun, and exciting.

I am Debbie.  Taking chances.  Making changes. Breaking Away.

© Debra A. Richardson

#raredisease #stiffpersonsyndrome #chronicillness #coping #liveforward

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