Sharing my life experiences challenged with Stiff Person Syndrome and diabetes, two chronic and disabling disorders; living forward with determination and humor, flying with wings of hope..."in spite of."
"My boyfriend's back and I am in trouble." ~Debbie's Song Parody
I remember way back in Junior High, (now Middle School), the prestige of being given a boy's ID bracelet to wear. His name on your wrist was a badge of honor, tween envy of having a boyfriend...going steady.
A dramatic SPS episode last week was a brutal reminder of how precarious and unpredictable an episode assault can be. Syndrome rarity makes emergency treatment a danger for me if I am unable to communicate.
The rest of my summer is anticipated visits with my mother, family, children, and grandchildren. Some of the visits require me traveling to parts unfamiliar with SPS.
SPS is a boorish bully following me through my life, unfortunately my steady Freddie (Krueger of Nightmare on Elm Street notoriety.) With great reluctance, I yielded to wearing his ID bracelet...an unattractive silver Medic Alert tag with black lettering. Nothing in the jewelry selections for the fashion diva in me so I went for the Scrooge frugality of cheapest.
Now I am 'tagged' from the healthy herd. A loose annoyance on my right wrist, I have an impressive display of engraving for all my ails with a case number and an 800 number to call for my lengthy info.
If I add anymore to my list, I will need the WWF Championship belt buckle to contain the engraving!
Anger blows out the lamp of the mind. ~Robert G. Ingersoll
We are all in the gutter, but some of us are looking at the stars. ~Oscar Wilde, Lady Windermere's Fan, 1893
=====
Preface: I understand the pain, physical and mental, of living with a chronic diagnosis. Currently, I am living with four and waiting further test results.
I experience times of grief, anger, depression, and sadness. It is my choice not to dwell in those places - Too much energy spent on negative nothing. Energy I would rather use for something positive - creating joy in my life, cherishing the simple, and sharing it with others. ;)
Inspired by those who choose to live with, and encourage in others, a chronic bad attitude. I did a parody of West Side Story - I Feel Pretty. ;) _______________________________________________
Beast Side Story I FEEL SH***Y
MISERY I'm a victim, world's only victim, I feel angry, and bitter and whine. And I pity myself more with the passing of time.
I feel like ranting, See it enchanting-- It's alarming how harming I feel, And so sh***y That I hardly can believe I'm real.
See me the victim in that mirror there: Who can that travesty be? Such an angry face, Such a bitter mess, Such a nasty smile, Such a sh***y me!
I am blaming And entitled-- Feel demanding and ranting in rage, For I'm a victim And a star on the Internet stage.
GLOOM, DESPAIR, & AGONY Have you met my good friend Misery, The angriest girl on the block? You''ll know her the minute you see her-- She's the one who acts out in an advanced State of shock.
She thinks she's a leader. Of other's in pain. She isn't a leader, She's merely insane.
It must be self-pity Of her rare disease An attitude so sh***y, Or maybe it's fleas.
MISERY I'm entitled, So entitled That the city should give me its key. A committee Should be organized to honor me.
I feel angry, I am bitter, I feel angry and bitter and whine, And so sh***y, All doctors can just resign!
See the victim in that mirror there:
GLOOM, DESPAIR, & AGONY What mirror where?
MISERY Who can that poor victim be?
GLOOM. DESPAIR, & AGONY Which? What? Where? Whom?
MISERY Such an angry face, Such a bitter mess, Such a nasty smile, Such a sh***y me!
ALL We are blaming And entitled-- Feel demanding and ranting in rage, For we are victims And stars on the Internet stage!
**For those too young to remember:
==========
Epilogue:
The purpose of a support group is to instill hope by sharing experiences, information, and extending an uplifting hand or word of encouragement to someone who is emotionally or physically drowning, not submerge them in negative hoplessness.
Floating around in SPS support cyberspace for 10 years now, I have seen some individuals feed on and encourage negativity, anger, and blame with pack mentality. Suffering wears many diagnostic faces, but I have seen some behave as if SPS is the only evil diagnosis in the medical world...trapped, by choice, within their own quagmire of woe.
I have been blessed by countless angels who lift me up while enduring the heated wrath of the SPS dragon. My heroes.
“[•] 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
"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.
"Life is a shipwreck but we must not forget to sing in the lifeboats." ~Voltaire
Most people are familiar with the Holocaust and the genocide of Hussein. The Killing Fields was a movie depicting the torture and slaughter of one million Cambodians. Why did I choose such graphic horrors to open this post?
Stiff Person Syndrome, as with any disabling neurological disorder, is an horrific diagnosis, sometimes a living death by choice. Negativity, anger, and bitterness become embraced attitudes of entitlement...an emotional death.
I experience occasional bouts of negativity in the natural grieving process of what I have physically lost to SPS. I choose not to dwell there. I can't carry a tune, but I try to be one who sings in the lifeboat.
Stiff Person Syndrome is the dictator, but I have found some support groups to be 'killing fields.' Negativity, blame, anger, and pity are encouraged and justified. By choice, many die an emotional death cheered on by comrades of commiseration. Victimology is a black swampy quagmire, sucking each step with defeat, drowning in self-pity.
I understand the necessary need to grieve. Many individuals with SPS have been an encouragement and inspiration to me, conquerors, not conquered. Under some of the syndrome's worst conditions, I hear them singing in the lifeboat.
"Oh, my friend,it's not what they take away from you that counts. It's what you do with what you have left." ~Hubert Humphrey
