Archive | February 2012

Risk To Bloom


“And the day came when the risk to remain tight in the bud was more painful than the risk it took to blossom.” ~Annais Nin

Viciously gutted from my life was physical ability, independence, my identity and sense of worth with the diagnosis of Stiff Person Syndrome. Guilt consumed me at the burden I believed I had become. Damaged. I further erroded my worth by living to please, ‘earning’ undeserved love. This misguided self-perception was reinforced by relevant others.

Years passed. In the darkness of my silent apathy, a spark of Debbie ignited a few smoldering embers of forgotten self. I mattered. I have feelings. I have a life. Sharing an address is not sharing a life. I reclaimed me from imposed indebtedness. I took the risk to bloom.

I still live as a physical hostage to SPS, but there is such an inner freedom to live as Debbie, ‘keeping it real.’

Not quite on my own.

“Nevertheless I am continually with You; You have taken hold of my right hand.” ~Psalms 73:23

“The time will come when, with elation, you will greet yourself arriving at your own door, in your own mirror, and each will smile at the other’s welcome and say, sit here. Eat. You will love again the stranger who was yourself. Give wine, Give bread. Give back your heart to itself, to the stranger who has loved you all your life. Whom you ignored for another, who knows you by heart.”

Copyright © 2012

Stroke Of Midnight

Cinderella: Why, it’s like a dream. A wonderful dream come true.
Fairy Godmother: Yes, my child, but like all dreams, well, I’m afraid this can’t last forever. You’ll have only ’til midnight, and then…
Cinderella: Midnight? Oh, thank you.
Fairy Godmother: Oh, now, now, now, now, now, just a minute. You must understand, my dear: On the stroke of twelve, the spell will be broken, and everything will be as it was before.

Since my Stiff Person diagnosis in 1994, it has taken years for medication, immunosuppressant therapy, and life adjustments to achieve a fragile ‘stability.’ The early years of an inching painful shuffle while contorted in relentless spasm have eased into a relative comfort maneuvering within the familiar security of home, interrupted with occasional symptom reminders.

Part of my life adjustment strategies have been planning my ‘out of home’ activities to coincide with medication peaks–an estimated 3 hours of seemingly unhindered normalcy barring any unexpected SPS cameo appearances. My hiking pole does not denote disability like a cane. Pulling a backpack on wheels gives me an assumed perception of walker security while carrying miscellaneous items, freeing my overdrive nervous system from multitasking the simplicity of just entering a public building.

Three precious hours. If planned right, an activity may overlap times of medication dosage, giving me some extra oomph or a brief extension of pharmaceutical magic.

As always, medication peaks decline at the clanging stroke of midnight. My coach turns back into a pumpkin, horses into mice, gown into rags–Stifferella once again.

Laying in syndrome cinders, I bask in the glowing memory of the ball and I dream. My Prince Charming is a cure, riding in on a white steed with a glass slipper custom-fitted for me. We ride off at the stroke of midnight, no longer a clamoring end to medication magic but ringing in a new day, a new life.

Copyright © 2012