Archive | January 2012

Lessons From Josey Wales

I watched Josey Wales the other night. From my SPS perspective, I vividly remember the date my normal life was violently destroyed by total Stiff Person assault. With diagnosis, I buried my former life in a daze of disbelief and grief, like Josey buried his slaughtered wife and son.

In a daily fight for some kind of life, I am an SPS outlaw.  I can relate to being hunted down, ducking danger, and waging defensive counterattacks while continually planning survival strategies, yearning for my former peaceful normalcy.

With a satirical parallel to my life with SPS, some of Josey’s quotations had significant lessons in coping as a chronic illness fugitive.

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Josey Wales: Now remember, when things look bad and it looks like you’re not gonna make it, then you gotta get mean. I mean plumb, mad-dog mean. ‘Cause if you lose your head and you give up then you neither live nor win. That’s just the way it is.

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Josey Wales: Dyin’ ain’t much of a livin’, boy.

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Carpetbagger: Your young friend could use some help.
[holds up a bottle of patent medicine]
Carpetbagger: This is it… one dollar a bottle. It works wonders on wounds.
Josey Wales: Works wonders on just about everything, eh?
Carpetbagger: It can do most anything.
Josey Wales: [spits tobacco juice on the carpetbagger’s coat] How is it with stains?

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Quote #1 – Attitude. “If you give up or lose your head you neither live nor win.” I need to focus, think with my mind not my emotions, & stay determined because “that is just the way it is!” 🙂

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Quote #2 – Perspective. The only guarantee life equally gives everyone is an unknown day of death. Fate dealt me a bum hand, but I choose to stay in the game. (Bluff?) Life is still a gift. To live each day like I am dying “ain’t much of a livin’.”

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Quote #3 – Humor & ‘carpetbaggers.’ Humor is vital to my well-being. I have a dark sense of humor about SPS that leaves some scratching their heads. Laughter diffuses the negative SPS grip on my life.

Carpetbaggers–opportunists who have a ‘miracle’ cure, whatever it may be? Really? I went to one of these miracle docs & deliberately messed with him a little. He became very angry at being exposed. How well do your pricey wonder bottles work on BS stains?

If only SPS would make peace with me like Fletcher did with Josey–just ride off to Mexico and quit stalking me.  Until then, don’t lose my head or give up.

The other evening, a body-jerking spasm gripped me in an unexpected assault. I fell against the patio wall, dropping some groceries, my hiking pole, but avoiding a tangled fall in my butterfly bush.  Shaken, I managed to regroup, leaning against the entryway as I shuffled the few remaining steps to the front door. Mentally I heard an appreciative chuckle whisper “whupped ’em again, Debbie”

Spitting dry fear out of my mouth,  I acknowledged with “reckon so.”

Copyright © 2012

The following movie trailer gives a brief idea of Josey Wales. While Josey was motivated by revenge, I am motivated by living.

Not Old Enough

January 2, 2012

“There must be a day or two in a man’s life when he is the precise age for something important.”
~Franklin P. Adams

Back in “my day,” turning 18 was epic–old enough for emancipation from parental rule, to legally buy and drink 3.2 beer, and to vote. Twenty-one was eagerly anticipated by the 3.2 beer crowd wishing to try the harder things in life. Overachievers.

In my early 20s, talk of retirement seemed an eternity away and pointless. In retirement visions, I pictured myself tanned and stylin’ on a tennis court with a handsome senior man, without wrinkles, firm, and athletic. Imposed early retirement was a brutal reality smack-down with my SPS diagnosis at 36. I lost my dream of the tennis court and celebration for turning 65 with a party from my co-workers, complete with presents.

The next milestone was qualifying for an AARP card and all of the membership advantages of turning 50–once again getting ‘carded.’ Deja vu, with beginning wrinkles.

I received some information in the mail about a very interesting social/intellectual/exercise program for individuals 55+…not quite ‘old enough.’ I am going to check into it anyway. Just a minor technicality, I turn 55 this year.

I am not old enough to be racking up the equivalent of cha-ching bonus points on a prescription card, watch older women walk effortlessly in a mall with envy, or have my social calender filled with doctor appointments. Nobody is.

Chronic illness or rare disease is non discriminating regardless of age, ethnicity, beliefs, or gender. NORD, (National Organization For Rare Disease), is our change.org.

Copyright © 2012

Throwing Rocks

December 30, 2011

“Oh the pain, the pain.” Dr. Smith
Lost In Space (1965-1968)

How to describe triggers for my symptom flares for SPS, (Stiff Person Syndrome). SPS is as sensitive to everything/anything as an anemic first-day menstruating female vampire, after a month-long starvation diet, during a full moon on crack–craving blood–mine!

This week, my SPS trigger was weather. Nothing drastic, just a slight drop in temperature and my body rebelled in symptomatic pain. Not quite the sharp stabbing kind, but the continual throb of an at the barely endurable ache of my back muscles, neck, and shoulder joints. Movement was more labored, but was a doable compared to the continual water drip torture type throbbing.

Lounged in my pajamas for the day, laid on my warm electric blanket, moved to the recliner, & tossed Aleve like breath mints. My thoughts and prayers went to those whose experiences were relentless acute pain without relief from prescription pain meds, feeling some gratitude with my temporary discomfort–I hoped.

I had two rough days, a day of letting up, and today is a residual of earlier in the week. I am grateful.

Recently I watched Forrest Gump again. The scene where Forrest and Jenny are married, holding hands and walking comes to mind. In looking at the ugliness of her childhood home, memories of the abuse she endured there manifest in anger as she picks up rocks and repeatedly throws them at the house to collapse in tears on the dirt path in emotional pain.

My house of abuse would be SPS, ugly, dilapidated, the destruction of my physical health. At times I get angry; I cry; and I cope. I throw meds down my throat, as prescribed, in an effort to subdue SPS symptoms. As with Jenny, throwing rocks is just a temporary solution. Daily I work on coping, but there are days…

“I guess sometime there just aren’t enough rocks.” ~Forrest Gump

Copyright © 2011

Winter Finals

December 26, 2011

“My school was so tough the school newspaper had an obituary section.”
~Norm Crosby quotes

SPSU, Stiff Person Syndrome University, is equivalent to Harvard graduate school if diagnosis was classified as a medical “School of Hard Knocks.” I won a full scholarship with my very high antibody score and impressive EMG results. My final clinical evaluation cinched acceptance.

There are a few fine print guarantees:

1) Graduation upon death, but with highest honors.
2) Lifetime member of the SPSU sorority, Delete Yo *Gamma, DYO.
3) 24-hour homework every day.
4) Year-round finals and labs.

This year, my labs were my year-end finals. Back-to-back, different tests, several different docs, some new courses–my stack of test results and orders got thicker with each week. Anemic by my last blood workup, the tech sported a DNA splattered “Got Blood” shirt, smiling at me with pointed eyeteeth. I was delirious from all the cramming and lack of blood-flow to the brain.

All of my results are in. I aced most of my tests, registering in the coveted and prestigious “normal” range or close. With SPS, physical mediocrity is a coveted Dean’s Award of healthy. I lost privileges to the SPSU Christmas bonfire, but I have enough scars from previous scorchers.

I am on a coveted Christmas break until the first of January, when classes resume…

“I was thinking about how people seem to read the Bible a whole lot more as they get older; then it dawned on me – they’re cramming for their final exam.” ~George Carlin

Copyright © 2011

*GABA is an acronym for gamma-Aminobutyric acid, the chief inhibitory neurotransmitter in the central nervous system. My body’s braking system derailed with a demented mind of its own with Stiff Person Syndrome. Girl gone wild without spring break?

In Vein

December 21, 2011

“I am not in the giving vein to-day.” ~William Shakespeare

During a gym workout earlier this week, I noticed the bulging veins on the young man beside me on the bicep curls equipment. Looking at my arms, I notice the same bulging veins. I also notice the telltale lumps from over two decades of poke and prod from my blood lab-work.

Receiving infusions since 1994, not to mention several blood checks from various labs from my ‘team’ of specialists, I am thankful I am still keeping vein access below my elbow without needing a port. In the last two weeks, my veins have been accessed four times, but who is counting? If I were a blood donor, I would qualify for honorary status, extra cookie, juice, and a t-shirt.

Maybe I will have a t-shirt made with Will’s quotation for my infusions and lab-work.

Just a random thought from a wandering/wondering mind.

Copyright © 2011

I Have A Name – Debbie

December 21, 2011

“You were born an original. Don’t die a copy.” ~John Mason

Some may call it a midlife crisis when you reach 50 and begin redefining your life for your encore. My life crisis came at 36 with a chronic life-altering diagnosis, life sentence, of Stiff Person Syndrome.

With that diagnosis, I lost my life, identity, and future to be tossed on the self-deprecating heap of “disabled” humanity. My beloved role of mother became more than a facet of me, but my reason for living. As a wife, I devalued myself as being “indebted,” a worthless burden, losing self-respect, love of self, sense of me–rebounding into a familiar comfort role.

Finding purpose in my affliction, I immersed myself into an outreach of hope and encouragement to others. Commendable, but I was drowning in my diagnosis, ICD-9 code 333.91. My name was secondary to various aliases, i.e. chart numbers, in several states under several specialists.

I had ceased to dream for my future, focusing on making the dreams of others a reality. As the body dies without nourishment, so the spirit will die without vision. In moments of self awareness in a double dip depression, I immerged from the engulfing depths to gasp breaths of me–Debbie: a person, a woman, an individual. My midlife awakening.

A favorite quotation of mine is from Eleanor Roosevelt, “No one can make you feel inferior without your permission.” I became angry with me for allowing my life, me, to become irrelevant second to the needs of others, living to please, unfaithful to myself. A revelation: The cost of ‘presumed’ security was too high.

I had willingly laid my life on a sacrificial altar. By choice I reclaimed my life. I had companions: consuming fear, no plan, unresolved pain, & my health issues. I also had my faith, determination, and prayer.

I spent a year of gut-wrenching resolution, still work on issues. I do live with a loaded gun at my head. SPS has an itchy trigger finger.

I lived so many years within my roles and as a career patient, I had (am) learning who Debbie is. Painful, exhilarating, uncertain, exciting–I am reacquainting myself with me, liking who I am and the person I am becoming. I have a name–Debbie.

I have a song–my life. I am the only one who can sing it. I have dreams, yet to be disclosed goals. A promising future entices with the fears of my reality but life is lived forward…”in spite of.”

Copyright © 2011

A song that resonates.

jean_victor_balin_double_croche (1)
I Got A Name

Camping – 100% Chance of Rain

December 19, 2011


“It always rains on tents. Rainstorms will travel thousands of miles, against prevailing winds for the opportunity to rain on a tent.” ~Dave Barry

In October, a girlfriend and I decided to break from the normal shopping, lunch, and movie outings to go camping. The distant rumbling of a storm began with our deviation from the mall sale racks to Sports Academy for fire starters. It poured rain that day.

Perfect planning–from meals, (homemade chili), gear, her trunk filled with $30.00 worth of firewood, to emergency rolls of toilet paper. Thinking of everything, we staged our two-day supplies in her dining room the day before, leaving wiggle room around her table.

After our successful tent-raising, we unloaded our cooler, dry goods tote, and lanterns onto the picnic table. Salivating over the evening’s dinner of chili & s’mores, the first drops of rain started to fall in defiance to the clear weather forecast.

During a steady gentle rain, we started a fire. Wet drops ran down the hood of my raincoat while I licked oozing melted marshmallow and chocolate from the rim of my squished graham crackers. Looking at my girlfriend, I started laughing at the chocolate dripping from her lips. The humor of the situation took hold of me as I said to her, “We have redefined desperation…two middle-aged women in the soaking rain for a chocolate fix.”

Marauding racoons pried the lid off of our dry goods tote twice, swiping our treasured cinnamon coffee cake among other white flour treasures…gluten-holics, not healthy. My friend had a leaking air mattress, nocturnal bathroom breaks, soggy paper towels, & a resistant fire start on the dry second night were a few of the minor and humorous challenges of our outdoor adventure.

Stiff Person went with me along with diabetes as always. My hiking pole helped me navigate gnarled tree roots along the ground, perception and obstacle triggers. Marauding symptoms stayed hidden, leaving the lid on my well-being tote fastened, contents undisturbed. I changed my insulin pump plumbing to fresh air and sunlight, disinfecting with antibacterial gel.

It was a great time–nature, food, quiet, friendship, and we burned the entire trunk of firewood. Though prepared, we did not need our emergency toilet paper.

“In spite of”…Life is still about moments like this.

“Night, the beloved. Night, when words fade and things come alive. When the destructive analysis of day is done, and all that is truly important becomes whole and sound again. When man reassembles his fragmentary self and grows with the calm of a tree.”
~Antoine de Saint-Exupéry

Copyright © 2011