Living With Stiff Person Syndrome

LIVING FORWARD - "IN SPITE OF"

"It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body." ~ Marcel Proust

My Twelve Step Attitudes

(future video under construction)

"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."

''IN SPITE OF" CHRONICALS

June 11, 2010

Welcome to the continuation of my journal, blogging they call it now.

I have lived twenty years of my adult life with SPS. Time has not made life easier, just a continual evolution of tactical maneuvers, physical adjustments, and thinking strategies in a long 20-year revolution. There will always be challenging battles. My SPS diagnosis was a lifelong declaration of war. It would be self-defeating to constantly look back at my life with remorse, (what if?), and not live forward, armed for battle, but with dreams and goals burning in my heart.

"Use it or lose it." Since moving, I had greatly relaxed on my relearning to walk routine. During the last month, I have initiated retraining my resistant and stubborn muscles to "walk like a man" with the timing of medication peaks and my trusty hiking poles. Some days are a quivering spasmodic turtle pace of pain. I have had a handful of times my body remembered how to move in fluid synchronization of step, step. I am ready for a nursing home waltz.

With time, age and some additional diagnoses have added fuel to my SPS fire. (Block party bonfire - hot dogs and marshmallows! Ready for s'more?) Once again, I am learning about other health issues with an innate understanding of how all of this correlates with my SPS symptoms and me. During my last neuro visit, my coach and I have updated some of our plays.

My goals. I have realized a renewing of my ambitions and confidence for further pursuits. Family becomes more precious to me with the quickly passing years - Travel, emotions, out-of-my-comfort range, SPS triggers.

After 20 years, all I can say is "Life is still worth living."

May today gift you with one memory worth reliving, one thing to bring a smile,
the chance to share love, and the wisdom to recognize opportunity.

Debbie

(Some excerpts from my blogging journal, "In Spite Of Chronicals.)

Master Of Illusion

“[•] How Does He Do That? ... Pan The Camera 45 Degrees.” ~ David Copperfield

Often I hear, "How do you do that?", when I explain I have SPS. Disbelief reactions at some of my perceived 'normalcy' in regards to appearance, a clean house, or animated conversation. It is all illusion, smoke and mirrors of medication magic.

Yesterday morning, I felt the tightening and ripples of what I 'thought' was just a bad morning. As my morning progressed, I sought help from Gertie, (my walker), and was alarmed at how my symptoms were worse than the typical bad day. I was also home alone.

A severe SPS attack occurred in the hall. Wracked with intense myoclonic spasm and inability to move, I managed to slide down Gert to lay on the hallway floor. From my SPS Primer, I remembered an early lesson from my SPS mentor and friend, Stephen. "Ground zero will usually stop an episode as a fall or a deliberate maneuver to get there."

As I lay on the hallway floor, the spasms alleviated and I rested while I mentally planned on how to get to the computer room with access to a phone. Getting upright, I managed a tightened with tremors, slow shuffle with Gertie to the computer room.

Wracked again with severe spasm, I slid down the door to the floor. After a few beached fish flops, my body quieted. I reached for my meds in my pocket and managed to shake a few diazepam on the floor. I crunched them and waited a few minutes to try to get to the desk.

My computer desk was only three feet away. Managing to get to my desk, SPS symptoms again overtook my body in a myoclonic seige. Helpless, I managed to lay back in my chair while my body convulsed for 15 - 20 minutes. Experience had me know, (hope), when the diazepam had time to kick in, my body would relax.

As the diazepam quieted the spasms, my body hiccupped in aftermath shocks as Gertie navigated me to bed. With a few shivers, I managed to lay down. It had been ages since I had an episode this severe or prolonged.

Looking at the clock, it was time for lunchtime medication. I was shocked when I opened my bottle to discover I had forgotten my morning baclofen dosage! (The trigger for my severe episode.) I heard Professor Stephen's voice telling me, "Always remember, without medication, you are 72 hours from your worst."

Today I am fine. None the worse for wear. I am a master of illusion. Medication, diversionary props, timed performances...all smoke and mirrors. Pan the camera 45 degrees.

"Art has a double face, of expression and illusion, just like science has a double face: the reality of error and the phantom of truth."
~ Publilius Syrus

Stalker

"There is a fine line between serendipity and stalking." ~David Coleman

I woke up this morning with a pulse. This is a good start. Unfortunately, hormones have SPS on the offensive. Next medication peak, I hope (?) to get groceries.

I have a confession...I stalk shopping carts. The handicap placard is of no use to me without an "open the door accessible shopping cart." (And medication mojo working.) Some stores are 'Johnny on the spot' getting wayward carts corralled back into the store. So...I slowly patrol the parking lot, waiting for someone to abandon the necessary wheeled independence for me...my target.

I noticed a warning on one store chain's shopping cart. The cart has a built-in alarm to alert the store at any attempt to remove the cart from the parking lot.

I just stalk carts. I do not kidnap them.

Shadow Boxing

"I've seen George Foreman shadow boxing and the shadow win."
~George Foreman

"Only the Shadow knows." Raspy words whispered in ominous secrecy from various black and white television shows viewed during my childhood. "The Shadow." Dark, relentless, stalking...an unknown entity lurking, watching, waiting. I have given "The Shadow" a name, Stiff Person Syndrome, SPS.

Life's light brings out this chronic shadow stepping in tandem with me...always there. SPS loves to spar. Daily engaging me, I block and jab with heavy gloves and tired spirit. Shadow boxing with the darkened image of me, my afflicted body, is living in the boxing ring of SPS. A welcome ring of the bell signals the end of round 11,674 as I retreat to my corner for a brief physical rest, prayer to my Coach, and adjustment strategies.

The bell clangs the beginning of another round as I stagger toward the dancing shadow in the ring. Though bruised, tired, and sometimes against the ropes...I remain undefeated for a knockout count of 10. I am still in the ring.

"It's less about the physical training, in the end, than it is about the mental preparation: boxing is a chess game. You have to be skilled enough and have trained hard enough to know how many different ways you can counterattack in any situation, at any moment. " ~Jimmie Smits

Home

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My Story - Part I

My Story - Part II

Syndrome Moments - My Journal

Living Forward - "In Spite Of"

Revised April 2010