SYNDROME MOMENTS 2007

December 26, 2007

In contemplating my resolutions for 2008, I came upon the following poem.  I hope I can strive to be a woman of strength in all areas of my life, not just for 2008.

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A strong woman works out everyday to keep her body in shape…
But a woman of strength builds relationships to keep her soul in shape

A strong woman isn't afraid of anything…
But a woman of strength shows courage in the midst of fear.

A strong woman won't let anyone get the better of her…
But a woman of strength gives the best of herself to everyone.

A strong woman makes mistakes and avoids the same in the future…
A woman of strength realizes life's mistakes can also be unexpected blessings, and capitalizes on them

A strong woman wears a look of confidence on her face…
But a woman of strength wears grace.

A strong woman has faith that she is strong enough for the journey…
But a woman of strength has faith that it is in the journey that she will become strong.

December 25, 2007

"For unto you is born this day in the city of David a Savior which is Christ the Lord...Glory to God in the highest and on earth peace, good will toward men."  Luke 2:11 & 14 KJV

"Hope sees the invisible, feels the intangible and achieves the impossible." ~Unknown~

Early morning was spent in quiet solitude.  I need alone time.  I recharge my spirit and rest my "continually-firing" body.

Early evening, my daughter and I went to a movie...a comedy/romance/adventure flick, a nice two-hour departure from life's difficulties.  We shared laughs and popcorn.  I have a serious weakness for movie theatre buttered popcorn.  I get a carb high just from the smell.

SPS liked the movie also, vicariously emitting heightened excitement through me.  The continual action and noise of the movie created an ominous "on the verge," edgy discomfort for me.  I took my "as needed" medication to enjoy the movie.  The chill in the theatre did not help my contracted muscles.  No matter where I go, SPS is an unwanted escort...obnoxious, attention-seeking, ill-mannered, a royal pain!?

Christmas...it means different things to people.  For me, it is a day that signifies God's gift of eternal love and hope with the birth of Jesus.  God's eternal love gives my life meaning.  Hope carries me when my I am too weary to go on.  Hope gives me courage with my daily challenges living with SPS.

I hope the shining star of Christmas touched your heart with promise and hope. (And buttered popcorn.)

Hope is the dream of a soul awake." ~French Proverb~

December 24, 2007

The Night Before Christmas - My SPS version.

December 23, 2007

Last minute Christmas errands and celebration preparations really get my SPS symptoms cranked.  The mall becomes bedlam the days before Christmas...the shopping-crazed in a retail takeover.  I had one errand to run.  Waiting for my medication to peak while mentally preparing for "out there," I took my walker just in case.  I usually only need it for extreme spasmodic episodes.  Mall parking was equivalent to North Pole proximity.  I was emboldened by pulling my folded walker by my side, at an impressive syndrome clip, to the mall entrance.  I got some strange stares, but you see everything at Christmas.

I like to plan my Christmas celebrations early, freeing everyone to pursue other activities on Christmas Day.  I woke the morning of our Christmas with painful tightness in my upper back, shoulders, and down my upper arms.  Excitement over sharing some time with my family and angst over food preparation was an interesting mix of symptom catalysts.

My focus on simplicity helps.  My guys like informal buffet-style munchies.  It makes it easy for me.  I can implement some already-made yummies from the deli combined with some homemade treats from my kitchen served on coordinating disposable tableware, compliments of Dixie.  This frees me to enjoy my family and alleviates some of the holiday stress.

A difficult lesson to relive and relearn with SPS is I only have so much energy reserves for the day.  I have to carefully plan and use those reserves.  A favorite saying of someone I know, "My mind writes checks my body can't cash."  My energy account did not bounce, but I depleted my reserves.  Bed was a very welcome end to a wonderful day.

December 19, 2007

I received an email  from an old friend.  She updated me on her life and wondered how I was doing, wanting to talk.  Others have shared losing friendships with the onset of SPS.  With a twinge of guilt, I realized I was the one who had neglected contact with her.

I called her.  We talked as if only days had lapsed instead of years..  It was a jolt to realize I had allowed the syndrome to strand me on a deserted island away from past friendships and developing new ones.

Maybe I should try to get back in the swim of things?

December 17, 2007

Today I had my neurologist appointment.  It is funny, in a tragic kind of way, as "normal" people will politely avert their glance from the physically-broken or mentally-challenged of society, we in the disabled community will do the same with our own.  "See no evil..."  I make it a point to try and make eye contact and smile in greeting.

He was sitting in the waiting room filling out papers.  He glanced up, looked again, and gave me a friendly smile.  He was a young man and quite simply...a hunk.  I would not categorize him in the "jock" category, a "Gold's Gym" muscle-shirt guy, but he exuded success from clear eyes and a confident demeanor.  A strong build was tastefully dressed in a plum dress shirt and coordinating striped tie.  In deference to winter weather, he topped his attire with a dressy black overcoat.

I felt a tug in my heart as I recognized the too familiar packet of papers a first visit requires, especially significant in a neurologist's office.  I gave him one of my website cards as I said, "I was diagnosed with a rare neurological disorder 14 years ago, Stiff Person Syndrome.  I was crawling on floors in spasm.  No matter what you may be told, there are many things that can be done."

He responded, "I am having numbness, weakness, and tingling on one side and now the other.  They do not know why."

His situation took me back to when I was diagnosed, my fear, how young I was to have my physical health jerk the rug of my future from under me.  Diagnostic possibilities for him broke my heart.

After my appointment, I was teasing the pretty young receptionist.  I said as I was leaving, "There is a hunk out there."

She smiled a huge smile of feminine appreciation and said, "I know."

He was still in the waiting room as I left.  His presence explained the giddiness of the young lady who calls patients back to the examination rooms, the keeper of the door.  

Who Knows?  Meredith Viera married Richard Cohen knowing he had MS.

December 16, 2007

Heightened emotions (good or bad) can cause my SPS body to do a Linda Blair, of Exorcist infamy, imitation of a 360-degree spinning head in time with Chubby Checkers' Let's Do the Twist...in double time.  There isn't an exorcism for SPS, just daily connected respites of medication.  The syndrome twisted version of The Twist may temporarily fade in a decrescendo, but the melody continually plays in the background.

Part of my coping involves relaxing from too much excitement or negative stress...a break from "doing."  I like a dimmed room softened with scented candles, easy listening music (A recent purchase of ocean sounds with soft music is a new favorite.), a funny movie, or just a nap.  Often, these things are as beneficial to me as my medication.  Renewal.

There was a time I could not be touched.  Touch was a trigger for violent body spasms for me.  For now, that trigger seems to be under control.  Another memory for my daughter's Christmas this year was full-body massages for the two of us.

I scheduled our appointment for last Saturday at an exclusive day spa.  It was short of heaven.  A dimly lit and warm room beckoned as we stripped down to our underpants and lay between sheets on the massage beds.  Soft music serenaded for the hour we were rubbed with warm lotion, soothing tight muscles, relaxing almost to the point of sleep.  I felt heavy and lethargic from the relaxation induced with the massage.

One thing SPS has taught me, take time to be still.

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Be Still

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"Don't underestimate the value of Doing Nothing, of just going along, listening to all the things you can't hear, and not bothering."
~Pooh's Little Instruction Book, inspired by A.A. Milne~

December 10, 2007

"Memory is a way of holding onto the things you love, the things you are, the things you never want to lose." 
~From the television show The Wonder Years~

Christmas frenzy can be a nightmare for SPS symptom triggers; braving cold weather, crowds, shopping, hustle-bustle stress.  Life has taught me priceless gifts come from the heart, the treasure of a memory.  I decided to give my son and daughter special memories this Christmas..."in spite of."    

One gift for my daughter was tickets for the two of us at the local dinner theatre, The Cabaret, for last Saturday.  Cabaret tickets include dinner from a choice of five entrees served prior to a live performance of Scrooge.  We dressed up for the occasion, two elegant ladies on the town.  SPS symptoms actually behaved for this special moment, except for muscle contractions from the freezing weather waiting for theatre omission and the always-present aches.

Our table was shared with two older ladies who were free dinner entertainment for us with their colorful gossip and cuisine comments.  During intermission, we ordered cheesecake drizzled in caramel for dessert.  My daughter leaned over, laid her head on my shoulder during the performance, and thanked me.  I could not buy the feeling she gave me. 

Dinner theatre is an event, a savoring of food and entertainment when shared with someone special.  We both loved the entire experience, adding another gem to our special memories cache.  

December 6, 2006

"I am my own woman."  ~Evita Perón~

Living with SPS, there are times when just coping consumes all of my time, energy, and waking thought.  I neglect being just a woman.  During the last year, I have been reconnecting with lost pieces of me and discovering exciting new ones.  I have discovered a wonderful indulgence...pedicures.

One of my syndrome challenges is foot care due a fixed, rigid, and immoveable lower spine.  I have gripped the bathroom vanity, sweat pouring out of my freshly-showered body because of the vicious spasmodic tremors rippling through my entire being as I try to clip my toenails with my free hand.  Applying lotion to my feet while sitting on a carpeted bathroom floor, an unexpected syndrome body slam knocked me backward in a real shoulder-on-the-mat victory for the always masked SPS villian (audible boos)...not a choreographed move on WWF.

I started my pedicure addiction as a paying guinea pig while my daughter was in cosmetology school.  Now that she is licensed, she likes me to come in to where she works.  Besides the luxurious decadence of my pedicure, (scented foot soak, nails clipped, lotion massage) I get a chance to visit with my daughter and do lunch at the mall food court.

Now I cater to my feminine vanity with toe polish.  My daughter chose a dark cherry-red for Christmas.  Nobody sees my flashy piggys, but I wiggle my jeweled set of "stay-at-homes" in tribute to the whimsical fun of being a woman..."in spite of."

December 4, 2007

Chronic illness or temporary health issues can equate to a prison sentence of life without parole or a lighter term in a maximum medical lock-down.  We, the afflicted, congregate in "general population" known as the infusion clinic.  I am serving a life sentence, convicted of first-degree SPS with one count of felonious insulin-dependent diabetes.  Shackled by cold-weather rigidity, I shuffled into the infusion clinic last Friday.

I had two interesting conversations...

He walked into the clinic on wobbly, unsteady legs.  Parking his cane, he chose a recliner across from me and sat down.  Making eye contact, I asked, "What are you in for?"

He smiled.  "MS."  It seems we had met quite some time ago.

He was a man in his prime, married with three children.  He told me his condition had been downgraded from remitting-relapsing to slowly-progressive, diagnosed in 2000.  Anyone with a devastating diagnosis remembers the anniversary the dreaded verdict was handed down...the day your life completely changed with a brief utterance from a doctor.  We discussed treatment options, dire predictions, and eternal hope.

With the empathy of one who lives with physical limitations, I watched him struggle getting the plastic wrap off of his fork and spoon for dinner.  Gallant and courteous, he waited for the nurse to come check on him before asking her to open the packet for him.  She left before he could get the lid off of his soup.  Again he waited for her convenience.

In spite of the obvious struggles of his body, he had such an untarnished spirit.  He radiated genuine kindness and happiness in the staggering weakness of his wake.  He was an inspiration.

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In the recliner beside me was a population regular...twice a week infusions.  She was convicted of multiple counts of serious autoimmune diseases, sentenced to five years on death row...fifteen years ago.  A very attractive petite woman in her mid-forties, she is assertive, vital, spontaneous, and fun..."in spite of."

We already know each other's dour medical history.  Friday, we talked as two women, sharing relationship problems within the confines of our never-ending health issues.

She has several years invested in a dead-end relationship.  I listened as she shared her loneliness, pain, and her fears.  After going through my divorce with all of the challenges of SPS, I could relate to her physical concerns, emotions, and marital situation.

Everyday life can be overwhelming living with a chronic illness like Stiff Person Syndrome.  My future looms with a morbid reality of negative possibilities, creating fear.  Fear imprisons.  Familiarity, at the expense of my sense of self, became a delusional comfort...marriage, a presumed security.  I devalued myself and unintentionally gave permission for others to devalue me also.  I heard the familiar theme in her story. 

Sharing my thoughts with her, she understood, knew she was enslaved by fear, seeking comfort in the familiar, no matter how self-destructive.  I ached for her, understanding the difficult choice...daring to risk or allowing fear to create complacency...security?

Brisk air once again locked me in syndrome's rigidity shackles on my exodus to the car.  I am humbled to walk among these giants of adversity...teaching me by example and uplifting me with understanding.

November 29, 2007

"We the willing, following the unknowing are doing the impossible. We have done so much for so long with so little that we are now able to do anything with nothing." ~Unknown~.

Sunday. I got into the movie theatre by myself...with the help of my trusty hiking pole.  I managed to cross a wide span of asphalt with inlaid textured tiles...asphalt with attitude  Meeting my daughter and her boyfriend, I ordered  popcorn and sodas for the price of two steak dinners or a prescription refill.  We watched Beowulf.

I enjoyed the Hollywood-creative-licensed epic.  On some level, I related to the larger-than-life hero, Beowulf, in his conquest against demonic monsters.  SPS symptoms and triggers morph from "normal" innocence to become hideous creatures I try to vanquish everyday with medication, effort, attitude, courage, and prayer.

Tuesday.  I did my six-lap walk, Nordic-style, armed with two hiking poles, my "just-in-case" medication, and a cell phone.   Empowered with Beowulf mentality, I trekked through the decaying bodies of brittle leaves scattered on the battlefield of winter to challenge an old SPS foe...two asphalt crossings.

Assessing the situation, I looked above the challenge, breathed deeply, and crossed both roads.  Emboldened with triumph, I managed 11 victorious crossings with only one retreat.  A vision of a broken arm at Christmas temporarily squelched my confidence with spasmodic tremors.

Wednesday, my mindset was of an accomplishment mode instead of conquering.  I did not extend my energy reserves to slaying asphalt dragons but concentrated on skillfully walking my six loops with quick and normal strides.  I was rewarded with another "can-do" moment.  With every accomplishment I feel deep gratitude.

Debbie The Conqueror, willing and unknowing, able to do anything with nothing...with occasional unpredictability.

November 26, 2007

This week finds my social calendar penciled in with three days of doctor appointments, Friday being the grand finale with my infusion.  Today I had my yearly appointment with my "lady" doctor.  After a look under my hood, she found my clunker engine to be in working order and gave me another 3,000 miles. Since my SPS diagnosis, there have been times when the impending scrutiny and climb onto the examination table were serious triggers for me.  It is an art to make cheerful small-talk during a pap test.

I was meeting my daughter after my "disrobe and probe" for her lunch break at the mall food court.  I found a way into the mall that does not require crossing the parking lot.  Thrilled at navigating the sidewalk and store entrance to surprise her (Alone!), her cell phone rang mine as I spotted her at another store entrance waiting for me.  She turned and saw me in the store and we both smiled at the significance of me already inside.

I thoroughly enjoy my daughter as a young woman, sharing her thoughts and experiences...and a love of chocolate.  She wanted something very sweet, not just a cookie, but a treat from The Chocolate Factory...a utopia for women where hormones and taste buds can unite in a carboholic feeding frenzy.  A person can have a major sugar spike just from the store's aroma.

I deserved a treat after walking from the food court to The Chocolate Factory.  Shiny floors, crowds of Christmas shoppers, the invisibility of glass walls frequently interrupted with store entrances created a vast and writhing onslaught to my syndrome sensitivities.  Chocolate was the next best thing to medication to smooth my frazzled nerves.

It is great to get into the mall solo, but what do I do once I am in there?

November 21, 2007

Tomorrow is Thanksgiving.  Tonight I decided to go to the store.  Big mistake.  There were three turkeys in the entire store and they were $18.00, pre-baked.  Contemplating what to do...buy the ready-made condor or go on a city-wide turkey trot...I spied some frozen turkey breasts in another bin.  These were a definite doable as they were oven ready...no cleaning the yucky stuff..  Somehow I always feel like I am violating the bird, post-mortem, cleaning out the cavity.

All of the procrastinators, including me and half the town, blocked aisles while wandering aimlessly lost looking for "traditional" Thanksgiving fare.  Another shopper clued me in she discovered everything in a display at the front of the store.  So much for looking for items where they normally go...just like home.  I did feel a moment's jubilation at nabbing the last bag of miniature marshmallows.

The rush, the crowd, the frenzied pace had me syndrome weary and looking forward to home.  The deli broccoli salad I bought was seducing my taste buds.  I should have the spooky background music accompany me throughout my day.  Nothing is ever easy or "normal."  Something sinister is always around the corner.

Getting home, arms chocked full of groceries (Whoever invented the plastic bags with handles was a genius.), I discovered my door would not open.  Laying down my loot, I tried all my keys with no response.  I made a couple of phone calls for suggestions.  Nothing worked.  The 24-hour emergency locksmith was out of town.  I prayed.

Hunger, fatigue, and frustration started working on my triggers.  Giving myself a calming time-out, I gathered up my haul to put back into the car.  I walked on my knees across the three-foot sidewalk to avoid a fall in deference to the danger alarm ringing loudly in my head.

Taking my prescribed emergency "just-in-case" medication, I drove to McDonalds, car heater blasting, to unwind, replenish, and warm-up.  Munching on a McRib, I talked on my cell phone and let time calm my angst. 

Going back home, I tried the door again and "Voila!" it opened.  I unloaded the car, stuffed my cupboards, and said a prayer of thanks.  

Another edge-of-my-seat episode of SPS reality.

November 20, 2007

“A healthy body is a guest chamber for the soul: a sick body is a prison.”  ~Francis Bacon, Sr.~

“The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself.” 
~Mark Caine~

My marriage ended earlier this year.  Out of respect for him, his family, my family, and me, I chose not to disclose the very personal issues behind the divorce in this forum.  It is still my choice to respect that privacy.  

Today, an angry and ill-informed individual could not differentiate between my earlier journal entries, facts, assumption, and purported dialogue.  After long and careful consideration, I decided it would be best for the community I hope this web journal serves to tell my feelings leading to divorce only from my Stiff Person perspective. 

We met when I was 34.  Two years of courtship had us inseparable and totally in love.  We married.  I was disabled from work with syndrome symptoms before our first anniversary, diagnosed a few months following.

He was supportive during that time.  I am tenacious.  Daily I struggled and worked through unimaginable symptoms and pain...privately.  It is my way.  I always made sure any public outings were preplanned around peak medication performance and minimal movement.  My family did not know the severity of my condition.

Anyone with an SPS diagnosis understands the identity annihilation that accompanies it.  I literally lost me: my sense of worth, independence, womanhood, physical abilities, future promise, everything...enshrouded with day-long spasms, pain, and fear.  I also felt enormous guilt toward my children and my husband.  I was broken, useless in my mind.  I felt undeserving.  I allowed myself and my feelings to not matter.  I literally allowed my importance as a person to die.

A physically-limited body becomes a prison.  The nature of SPS symptoms creates isolation.  Moving from Ohio to Colorado, I lost all personal connections except for my husband and young daughter.  Lack of mobility did not allow me to pursue my own life.

The move coupled with SPS created total isolation for me.  My home along with my body became a maximum security prison.  The deterioration of our relationship was not a spontaneous thing.  It was a gradual erosion.  The more I died inside, the more control he had.  He could not have had it if I had not allowed it.  I gave the keys of my life to my husband, unintentionally making him my jailor.

There is a phenomenon called Stockholm Syndrome where a hostage will feel love for the captor.  I lived to please.  As time progressed and we regressed, unhappiness grew inside me.  I always explained it away, trying to convince me. This deterioration created other serious problems in our marriage.  It was easier to pretend nothing was wrong.  I am a woman who cannot live pretense forever.  When I finally decided to take back my life, those other serious problems had become deal-breakers.

It was and is a frightening thing to take off on my own after 14 years of marriage, having SPS and diabetes at the age of 50.  Some think I am crazy, others brave.  I feel alive.

I mourn the grief, cherish the good, and wish good things for both of us.

"It is far better to be alone than wish you were."  ~Ann Landers~

“Begin doing what you want to do now. We are not living in eternity. We have only this moment, sparkling like a star in our hand-and melting like a snowflake...”  ~Francis Bacon Sr.~

A poem I had written several years ago expressing the feelings of my heart then:

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Need

Onerous duty serves until self-effacement becomes the final sacrifice.
Emotionally filleted, viscerally exposed.
Bleeding drops of surrender emit the fetid odor of dejected apathy.
The wounded scent attracts the ravenous hunger of the scavenger.
Watching with eager eyes of rapacious dominion, the familiar wait begins.
Enmity copulates.
The selfish need to possess.
The tragic need to please.
Aberrant love conceived.

© Debra A. Richardson
   June 2003

November 5, 2007

Sentenced to an SPS life without parole, I do what any inmate will do.  I study law hoping for an acquittal.  I found some laws I consider applicable to life with SPS.  With tongue-in-cheek irreverence...

Stiff Person Syndrome Rules of Law 

Newton's Law Of Inertia:

An object at rest will remain at rest unless acted on by an unbalanced force. An object in motion continues in motion with the same speed and in the same direction unless acted upon by an unbalanced force.

I can say with syndrome certainty that syndrome falls prove the law of inertia.  The unbalanced force is always contact with ground zero, e.g., concrete, floor, asphalt, and a body part.   

Murphy's Laws: 

1. Anything that can go wrong, will go wrong.
2. Nature always sides with the hidden flaw.
3. In nature, nothing is ever right. Therefore, if everything is going right ... something is wrong.

Pudder's Laws

1. Anything that begins well ends badly.
2. Anything that begins badly ends worse.

Stockmayer's Theorem

Flap's Law

Looking at Flap's Law with my SPS perception, inanimate objects have been a helpful prop or symptom obstacle, depending on the circumstances...sometimes both?  

Brought to you by the law offices of Murphy, Pudder, Stockmayer, and Flap.

November 3, 2007

Yesterday I "crashed" a party...SPS style.  I was invited to a baby shower.  Any social event can become spontaneously climatic when SPS is your constant escort...any moment of a day.

I was experiencing a very good day...a sure warning.  I was helping to set out refreshments before the guests arrived.  The cake was an adorable confection - a pink baby carriage decorated with flowers.  (It is a girl.)  A baby shower cake is "the" desert and a focal table decoration combo.

The meatballs and cheese plate were on the table.  I was carrying in the vegetable tray and dip, beautifully arranged on a crystal pedestal plate. (May they rest in peace.)  My foot hit an unseen cooler filled with soda causing my body to brake in an instant emergency stop, flinging my body forward in the dreaded familiar fall.  An airborne missile of the crystal dish of vegetables shattered on the floor scattering the contents.  

The thud of my body and the forced splintering of glass created an audible SOS rallying everyone into an impromptu rescue squad.  Managing to pick myself off the floor, I mentally did a physical inventory and concluded I was hurt but not an ER admission.

Mortified, I surveyed the damage to the seconds-before-perfection decor of the refreshment table.  Pieces of glass littered the floor and shimmered on the table.  Strewn carrots and celery were casualties in this SPS siege of the baby shower.  I was the bomb-strapped terrorist who pulled the cord.

I wanted to cry, not because of injury but guilt over ruining the shower for this young mother-to-be...I thought.  I managed to squelch sobs.  I was amazed I did not hit the table and send the cake somersaulting midair, mentally picturing the devastation.  Retaining its' place of honor at the table, the cake remained unscathed.  

Everyone was great.  Within minutes the mess was miraculously cleaned up, a new vegetable tray surfaced, and there was no evidence of the calamity...except me.  My knees hurt and I had injured my right arm, a cut oozing blood while some pooled under the skin in a bright purple-red color.  Luckily, the grandma-to-be is a nurse.  She gave me a look-see and party clearance.

Thankfully, the baby shower turned out to be a wonderful welcome party for the new mom-to-be, her precious unborn, and attendees.  

I redefined the term "party-animal."  

October 29, 2007

I am thankful I have insurance coverage for IVIg.  My infusions have given me a quality of life with SPS.  The Medicare Modernization Act of 2003 has had a negative impact on many in the chronic illness community.  Medicare mandates are often the guidelines for private insurance carriers.  Access to IVIg has become limited in what disorders are covered and cost re-imbursement continually decreased.  Millions of individuals have been negatively impacted with denial of care because of these changes.  Some die.

Chronic illness tends to mold some daunting individuals; people who channel their intelligence and energy to become informed patients and passionate advocates.  I have been in contact with two phenomenal ladies, each with their own health issues.  They are instrumental in the launch and running of a nonprofit organization to lobby government for changes for IVIg coverage, assembling an impressive group of advocates: The Alliance For Plasma Therapies

I am honored and excited to be a part of this group.  I pray I can be an asset.  

"The purpose of life is a life of purpose."  ~Robert Byrne~

October 27, 2007

Yesterday was my infusion.  Ongoing construction at the hospital takes away my "familiarity" crutch.  My check-in point has varied.  Entering a parking lot resembling a war zone, handicapped access is limited, even general parking.  I always equate my excursions with Stiff Person Syndrome to a starring role in an action flick.  The construction noise resembled gunfire.  I know how to hit the dirt.

My medical team and a few infusion regulars have become a social network for me.  We share personal details in conversation outside the realm of our hospital environment and afflictions.  Chronic illness already consumes enough of life.

Vitals taken and vein accessed, I sit back in my chair to contemplate the highlight of my day, what to choose for lunch from the hospital menu. Watching the slow rhythmic drip of immunoglobulin into my arm has become a routine for me since 1994...the days spent in an infusion chair.

After spending the day in idle conversation, reading, or snoozing (Not much else to do tethered to a drip pole.), I am released to re-enter the war-zone to find my parked vehicle.  Feeling a little shaky, a kind gentleman offers his arm to me as he escorts me to my car.

Sometimes treatment can be as difficult as a condition.  My IVIg infusions give me a headache and a heavy lethargy afterwards.  My evening is penciled in...rest, rest, rest.  

October 16, 2007

I started working on my solo walking "out there" the beginning of this year, trying to re-teach my rebellious body how to move with the mindless fluidity prior to SPS.  Each ambulating venture is always an adventure into the unknown for me.  I practice mental flexibility with my rigid body. (Know when to hold 'em; know when to fold 'em.)  

I am trying a new walking trail.  My body was painfully resistant with syndrome rigidity on my first attempt.  I took a few laborious acquaintance laps, forgoing crossing a small asphalt road.  My body lurched when the surrounding hedge opened to a view of a swiftly moving canal. I had to back-track.  During one of my laps, a Labrador-sized poodle galloped toward me barking in excitement to sniff me.  I planted myself and managed to stay upright while "Killer Fifi's" owner called the Hulk Hogan-in-drag canine back.

My body responded positively to my second walk.  I managed to cross the small asphalt road twice.  Panic set it on my third attempt, so I chose to end this session of "SPS-crossing-the-road-101" with a double triumph.  Rhythmic crunching of my confident steps on the gravel path was in steady tandem with the swing of my hiking poles.  Mental energy succumbed to pleasant observation of the autumn-kissed trail and peaceful thoughts.

Walk three was a typical SPS paradox.  My steps were brisk and my walk was equivalent to a syndrome marathon.  I easily crossed the asphalt obstacle once.  Upon my second approach, my body rebelled.  I gingerly stepped onto the pavement.  Three steps out, looking like I was walking on thin ice, I retreated back to the safety of the curb.  Another day.

I made several laps back and forth avoiding the road.  Making my U-turns, I had to wait for my body to catch up with my mind.  I was determined to conquer some pavement paranoia.  It wasn't the road, but I walked several feet away from parking lot boundaries with an occasional hesitation.  I practiced pavement pounding for awhile, looking weird but feeling proud.

Today I struggled through four c-section laps.  I started out strong, crossing the small parking lot a few feet from the curb.  Again my body did a complete halt at the road.  Darkening clouds, a strengthening wind, and a swirling of air-blown leaves became sensory overload for me.  Sensory overload physically resulted in a deliberate shuffle with tremors of spasm and the tightening pull of increased rigidity.  I called the game, pleased with what I did do

I don't care why the chicken crossed the road.  I just want to know how.

October 13, 2007

"A keen sense of humor helps us to overlook the unbecoming, understand the unconventional, tolerated the unpleasant, overcome the unexpected, and outlast the unbearable." ~Billy Graham~

I have always loved to laugh, and I still do.  I find humor in SPS.  A sense of humor has proven to be an invaluable coping mechanism and a reminder I still have much in life to enjoy.  I made the following Halloween email greeting last year for my syndrome buddies.  I thought I would share it in my journal.

Halloween Greeting 2007

October 9, 2007

"The young have aspirations that never come to pass, the old have reminiscences of what never happened. It's only the middle-aged who are really conscious of their limitations." ~Saki~

Living with SPS, part of my coping is a periodic assessment of my life.  This last year has been emotionally brutal in acknowledging some realities in my life and finding the courage to make difficult changes.  Some may attribute my decisions as a "midlife crisis."  I have to smile at that term in context with me.  I had a life-altering crisis at 36 with my SPS diagnosis.  Midlife is not threatening to me.   Old age is a goal, not a fear.

I am aware of precious time, the gift of a day, the miracle of a moment.  SPS is a constant reminder of the unpredictability and certainty of my own mortality.  This period has been my "midlife awakening."   I do not want a future someday to haunt me with "what if," and know the pivotal moment was now.  I have to be willing to dare.  I have to be willing to try..."in spite of."

"Decide what you want, decide what you are willing to exchange for it. Establish your priorities and go to work." ~H.L. Hunt~

October 5, 2007

I was given yellow roses when I opened the door.  I had not received flowers from a man in 17 years.  He handed the vase of delicate buttered-colored blooms to me with an appreciative smile.  Almost believing I was whole, I felt beautiful.

The soft glow of several scented candles emitted an atmosphere of intimate welcome, accompanied by a CD of romantic instrumentals.  Crystal water glasses, my good dishes, and cloth napkins decorated the table for the meal I prepared...ambiance. 

In deference to my syndrome triggers of rush and multi-tasking, I kept the meal simple: baked salmon, buttered new potatoes with chives, and peas with mushrooms (a nuke-in-the-bag microwave marvel).  From the creativity of my imagination (spooky), I made a raspberry dessert, a light and tasteful compliment to dinner.

Atmosphere and my dinner guest were fertile ground for bountiful conversation. Time ceased.  My socially drought-starved mind soaked up his drops of thought: witty, deep, philosophical, fun.  I responded to his interested reception...a volley of talking and listening.  Discussing a myriad of topics, excluding troubles, the mundane, or SPS, was scintillating. 

It can be easy to devalue oneself when afflicted with a physically-limiting disorder.  I had temporarily lost the core essence of me.  Dinner was one more affirmation of rediscovering myself as an individual, a mind, a person, and a woman.  As much as I enjoyed his company, he enjoyed mine.  We were the centerpiece of the table. I still have a lot of life to live and much to offer..."in spite of."    

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." ~Helen Keller~

"We will often find compensation if we think more of what life has given us and less about what life has taken away." ~Unknown~

September 30, 2007

"You are home all day."...such a simple sentence.  Loaded with implication, that statement can be very hurtful, whether intentionally or unintentionally.  

Implied:

You have nothing of relevance in your life so I do not feel guilty expecting chunks of your time or attention at/for my convenience.

I am superior because I work.  You have the luxury of being home all day where I am busy.  I expect your unquestioned accommodation to my schedule.

You are not needed or important...a social non-entity.  You need me, therefore you owe me.

=====

I envision the zoo, captivity to many of nature's magnificent creatures.  Forced into bondage for spectator amusement, they are well fed and cared for.  They sleep in apathy.  The confines of their existence steal the fire from their soul.  

My body is captive to a neurological disorder, SPS.  I did not choose the limitations of my life.  If given a choice, I would gladly trade my "stay-at-home" existence and body with anyone who ever uttered those words to me in condescension or misguided envy.  Disability is hard time without parole...24/7.  

"To know what you prefer instead of humbly saying Amen to what the world tells you you ought to prefer, is to have kept your soul alive." ~Robert Louis Stevenson~

September 25, 2007

Double standards and prejudices exist among all groups of people...even those associated with the disabled.

In having a discussion with someone close, the subject of dating and relationships came up.  I was discouraged from ever having another relationship with a man.  I thought I only had health issues.  The last I checked, I have a pulse?

The conversation shifted as to what kind of man I should consider.  Again I think, one with a pulse?  When I expressed I would consider someone with health issues (I should understand, right?), I was seriously discouraged about the problems associated with a relationship with someone with health problems.  (What did I miss?)

I think to myself, "Let me see, I am considered 'marketable,' but I come with enough healthcare baggage to constitute a Samsonite ensemble with a matching trunk, well over the 50 lb. airport limit."

I am biased, but I know a lot of available, warm, caring, intelligent, and fun men and women in the disabled community...with a pulse.

September 19, 2007

As a newly-single woman with a rare neurological disorder, Stiff Person Syndrome, I have some difficult considerations, possibly decisions to make in regard to my life.

I live in a very remote and inaccessible area of Colorado considering time and distance to a knowledgeable medical facility in a city...six hours to Salt Lake and five hours to Denver.  I am my neuro's "first and only" SPS patient...along with being "one in a million."  I could easily surrender my "specialty" status.

During my divorce and busyness in selling the house this summer, I realized just how isolated I had allowed my life to become.  I did not have one person to contact for help, outside of a neighbor's kind offer and my daughter's boyfriend.  My son lives 90 miles away.  What would I do in a medical emergency?

I always look for the high road but maintain a healthy perspective of my reality.  I have had SPS and diabetes for 18 years and I am getting older.  My neurologist is not always available.  I need knowledgeable and proximal care.

I can see me in ER, a frantic call to my internist and "Dr. Somebody", who happens to be on call, in a frenzied shuffle through my two-inch medical file educating himself and a disbelieving ER staff, on the fly, to hopefully stave off a code blue.  My neurologist is gone for one of his weekend retreats...a very real possibility.

I have massive medical files, several two inches thick.  I am thinking about getting all my medical records and insurance EOBs (explanation of benefits) leather-bound by years for an impressive personal library display in my home.  Deep burgundy or mahogany brown?  Definitely gold lettering.

Outside of choosing a matching table book of lab results to match my library, I have some serious things to consider, but the opportunity to decide.

September 8, 2007

Finally!  Freed from house responsibilities, I got to take my daughter on the vacation I promised her for graduation and her 18th birthday in May.  It was our celebration.  She is beginning her life as a young woman.  I am beginning a new life as a middle-aged woman with SPS.

As always, there is the airport security scrutiny of my carry-on, filled with an impressive array of medical supplies for my insulin pump and syndrome medications.  With an over-played sense of duty, one guard confiscated our sealed bottled water and had us watch as he threw it away.  Funny...I forgot to remove my pocket-knife from my key-chain and it made it through?  So much for the eagle eye expertise of airport security guard 007.

My daughter chose our vacation destination with two criteria: water and green.  We spent one day completely spontaneous...letting adventuresome whims take us wherever.  Whether laughing, exploring, gorging on decadent food, sharing secrets, or splurging on souvenir baubles, we thoroughly enjoyed our time together.  

We created a memory to cherish for the rest of our lives, deepening our bond from mother/daughter to woman to woman.

August 18, 2007

We closed on the house yesterday.  It is funny, in a tragic sense of the word, the only remaining link between my ex-husband and me was shared ownership of a house...walls, carpet, doors, and windows...empty.

I do not feel sadness over selling  the house...just the freedom of relief...daring to gulp sweet breaths of air after holding my breath too long.

Living with Stiff Person Syndrome, I have learned to live with continual readjustment and unpredictability, rebuilding my life after the loss of physical ability.  These daily SPS lessons in coping have helped strengthen me during the ending of my marriage.

Stiff Person Syndrome was not the cause of our divorce.  If anything, it contributed to the erosion of our relationship by creating a destructive gratitude in me, an apathetic compliance because I was "damaged goods," therefore lucky to have someone.  I devalued myself and my feelings, giving unspoken permission for him to do the same.  I lost me.

The closing of the house signifies the closing of a chapter in my life.  I hope the future is fulfilling and happy for both of us.

July 28, 2007

We did it!  My daughter and I moved.  I found an adorable condo for the two of us...small, SPS-friendly, and no yard-work.  She and I are so excited.  There is a tentative closing date on the house next month.    

The house already represents confinement to me, exacerbated this summer by court-appointed residency (responsibility) until the house sells.  My life has been so solitary, it is startling to realize I know no one to help me.

With the ever-present challenges of SPS, I have managed to maintain the yard.  Spasms and muscle aches are mowing companions.  I use the mower to blow off the sidewalk and improvise as a macho walker to get into the back yard.  My daughter and her boyfriend help when their busy work schedules allow.

I am thrilled at the accomplishment of "normal" chores.  With a bond of determination and hope, my daughter and I trimmed bushes and packed up belongings, sorting "stuff" into keep, sell, dispose, and charity.

We had some casualties.  My daughter weed-whacked her leg.  Repetitious work has created some tendonitis and hand numbness for me.  We both sported blisters.  The worst...I experienced my first fall in a long time.  

Walking through a dark kitchen, my foot hit a packed box.  My body went into a rigid fall.  I hit the wood floor in typical "tin-soldier" mode.  Somehow, my bent arms kept my head from cracking on the floor.  Jarred and stunned, I did a mental inventory for any serious injuries.  Outside of a bruised knee and elbow, the most serious complication is a faltering in my physical confidence.  SPS "thrills and spills."

Though physically challenging, accomplishment has been empowering for me.  I am grateful to God and thankful for a new home, the hopeful step of a new beginning.

"In the confrontation between the stream and the rock, the stream always wins - not through strength but by perseverance." 
~H. Jackson Brown~

July 15, 2007

In sorting through junk and massive paperwork to (hopefully) prepare for a move, (A future SPS saga on reality television.), I ran across a thought I had jotted down in 2003.  I wanted to share my thought in a web page expression.

Braveheart

July 9, 2007

When diagnosed with a rare neurological disorder like Stiff Person Syndrome, it is a given to want to know "How much time do I have?"  It was one of my first and biggest concerns.  I have had SPS and diabetes for almost 18 years.  I still wonder on occasion, "how long?" or just, "how?"  

I almost bought the farm yesterday.  In sinc with my quirky life, my "almost" did not involve SPS or diabetes but a strawberry twizzler.  I was visiting my mom who always keeps a stash of confectionary goodies.  She had a bag of unopened strawberry twizzlers on her kitchen counter.  A voice from the bag begged me to let the licorice out.  Always obedient to phantom sugar calls, I opened the bag.

Thinking of Mom, I took a couple of strips out to her.  Walking back into the kitchen, some of the candy stuck in my throat while swallowing.  I tried to dislodge it, but couldn't.  My airway was blocked.  In attempting to breathe, trapped air was a sickening rasp in my throat as my lungs screamed for air.

I managed to walk where my mom could see me and pointed to my throat.  She ran over, and in comedic hindsight?, was going to try to Heimlich me.  I bent over and she pounded on my back. (I know...a no-no.)  The pounding dislodged the candy so I could gulp some oxygen.

Mom looked at me and said, "Your back is really hard.  I don't think I could have done the Heimlich on you.  Is that part of Stiffman?"

It is strange how you can live with something so long, share with others, and still have moments bring it to a beginning awareness.  

While my body was frantically reacting to choking, my thought processes were oddly calm.  My thoughts were if this was "it."  "How long before I pass out and EMTs would arrive?"  "Would I suffer brain damage from lack of oxygen?"  "Could I dislodge the candy by throwing my torso against a chair?"

"Death by chocolate," sounds delightfully decadent.  What can you say about death by strawberry Twizzlers?

July 6, 2007

The house has been up for sale since April.  Nothing can test your stamina like being a woman alone with SPS and keeping a house "show-room" perfect for the many intrusive showings.  Show-room perfection extends beyond shiny bathroom faucets to include lawn maintenance.

It is always a Vegas bet which will putter first, me or our piece-meal lawn mower.  I am always amused at the deceptive visual of SPS-afflicted me operating this do-it-yourself repaired marvel of duct-tape-mentality, a poser of an efficient mower.  The mower and I have so much in common.  We both appear functional.  Clutching the mower's handle keeps me upright and balanced.  The mower can only operate with my guidance.  We need each other.

Our sputtering mower's performance did not improve with diazepam in the gas tank.  Replacing a dulled blade, badly corroded spark plug, and condemned air filter put some va-voom back into the grass whacker.  (I wish it were that simple and cheap to jump-start me.)

Rekindled life in the old Troy-built made the mower much more difficult to point and push, now cutting grass instead of laying it over.  Because of my SPS and triple-digit temps, I chose a morning to mow so as not to induce an SPS shake and bake.

Looking at my hands after I finished the yard, I had developed blisters on both palms.  I had felt burning in my hands, but SPS pain makes me oblivious to many "owies."    The left hand had a one-inch bubble that had busted open.

I studied my hands and smiled.  It was wonderful to have a boo-boo that came from hard and "normal" activity, not some injury caused by a crazy Stiff Person stunt.  (A spasmodic asphalt free fall resulting in a broken elbow, chipped tooth, and stitched head.)  I study the progress of my healing blisters with pride.

July 5, 2007

I bought groceries tonight.  Pre-SPS, grocery shopping was an inconvenient chore, part of my "normalcy" routine.  With SPS, grocery shopping is a coveted outing "out there" and a syndrome challenge.  Alone, it is an adventure of independency padded with pre-planned caution.

My youngest child is officially an 18-year-old adult. (?!)  My 30-year role as a mother has been recast to loving advisor and peer or an emotionally-hysterical onlooker...depending on the circumstance.  As I shopped, I recognized this moment as a sporadic SPS reprieve, a good day.  Without the restraints of being somewhere or something to anyone, I deeply inhaled the air of middle-aged emancipation and felt an emotional high.

I slowly savored the home furnishing aisles and indulged my woman's vanity with a leisurely perusal of toiletries.  How long had it been?  I was blessed with a long-forgotten gift of selfish time.  I chose to embrace it, squeezing everything this evening had to offer...awareness of myself as an reemerging fledgling, my response of simple happiness, and my change of self-reliance.

Accomplishment of this solo outing filled my heart with youthful abandon, encompassing me in the warmth of gratitude.  Life is good.

July 1, 2007

“Vitality shows in not only the ability to persist but the ability to start over.”  ~F. Scott Fitzgerald~

I will be 50 this year...a '57 model...a classic.  Looking back over my life, I realize it was a continual series of endings followed by beginnings.  The two hardest beginnings was life after the death of my oldest daughter and coming to terms with my Stiff Person Syndrome diagnosis...both a resurrection.

I am starting over in middle age with two serious chronic health issues.  It is sad, frightening, and exciting.  My emotions in coming to terms with all of the ramifications have been similar to a hyper super-ball gaining momentum in an enclosed cement room, all over the place.

We may have an offer on the house.

June 29, 2007

This summer I am the residential groundskeeper of our house until it sells.  Interesting combo: sharp implements, open yard, and SPS.  Accomplishment thrills me.  My sweat-soaked shirt is a trophy of triumph.  I always thank the Lord.

I cannot mow "at will."  It takes medication timing and a good day.  The mower is a demented walker with road rage for me.  My daughter is my partner.  We high-five one another, our raised hands cementing a bond beyond mother and daughter...a sisterhood of "can do" women on their own.  She thinks we should start a landscaping business.  I can picture us dusting rocks in a remote desert based on our "expertise."  So far, our only casualties have been a blood blister, a weed-whacker cut, and an aggravation of bursitis/tendonitis symptoms.

She and I trimmed bushes the first time for either of us.  I looked for Edward Scissorhands in the yellow pages without luck.  Our bush sculpting abilities lay more in the Picasso abstract vein.  Actually, we did very well.  I kept picturing me falling and impaling myself on the hedge-clippers.  Not a glamorous end to a bizarre life but a syndrome possibility.  I envisioned my epitaph, "She lived life on the edge and died trimming a hedge."

Pulling weeds with SPS can be a "trip."  I have to think how to get up from a crouch.  A frayed broom works as my crutch and prop.

Despite strained muscles and syndrome difficulties, I am ecstatic with the sense of pride in accomplishment.  My daughter feels it too.

June 24, 2007

So much has transpired this year, changes in my life, changes in me.  One aspect of my New Year's pact was to cut unnecessary stress from my life.  The relevance was proven to me.   I can only quote the serenity prayer:

"God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."

Months of hard physical and mental work had started to pay off, coupled with benefit from my medication/IVIg, with increased confidence and episodes of independent mobility.  In my newfound self-assurance, I experienced a hard-learned SPS lesson.  The syndrome can awaken and shake your being when you least expect it, sometimes dangerously so.

Earlier this year, I was engaged in an emotionally strained conversation.  I was not aware how stressful this interchange was for me.  Stress, good or bad, is a syndrome trigger for me.  Crossing the kitchen, I was suddenly hit with acute torso spasms.  I had difficulty breathing while trying to lower myself to the floor, only to become immobile with rigidity.  I started to black out.

I was helped to the couch where a bout of nausea hit me with the release of the spasmodic stranglehold.  I threw up.  I was overcome with heavy fatigue and fell into a deep sleep.  This was a first and only episode like this, but it terrified me.  I learned from it.  I cannot control what fate may have in store for me, but I can emulate the Serenity Prayer by practicing wisdom to change the things I can...choosing not to engage in unnecessary stressful situations or difficult people.

 June 23, 2007

You don't get to choose how you're going to die. Or when. You can only decide how you're going to live. Now.  ~Joan Baez~

My "now" was a New Year's resolution with the birth of 2007.  I made a pact with myself about several life decisions.  One was to try to regain some physical independence...at least the effort to try.

I spent weeks in a rigorous routine of ambulatory training at the park's soccer field...a prize fighter seeking the title of independent normalcy.  Still do.  Like a portable mixer operating with a short circuit, my fickle body sometimes rewards me with a carefree walk when signals connect. 

My questionable successes empowered me with a long forgotten sense of "can do."  I expanded my self-induced Pavlov theory of positive reinforcement to enter public buildings alone, hopefully without consuming terror and spasm.  This has been and still proves to be a tough one.

Parking along the sidewalk to access the bank or post office has become easier by rote, with an occasional SPS drowning in quicksand tremors.  Crossing parking lots is very problematic for me.  I haven't conquered that one.  

I managed to park close to an entrance of a department store requiring a walk across a parking lot drive.  I made it into the store.  I realized I was in deep trouble when I came out.  I could not cross back to my car.  I tried several times, made a few committed steps into the drive, and retreated back to the safety of grass in hyper SPS mode.  

A sense of self-preservation and desperation had me ask for help.  Two ladies responded but an Hispanic lady reached me first.  Stiff Person Syndrome is hard enough to explain without a language barrier.  She thought my bag with a couple apparel purchases was the problem and tried to carry it for me.  I tried to explain I just needed her arm.  When I reached the "safety" of the other side, I thanked her for her help and proceeded to my car on my own.  I could hear her single word thought..."loco."

Accomplishment, while still experiencing the unpredictable SPS circuit break, I am regaining a sense of me...a burning heart. 

Burning Heart

~Survivor~

In the warriors code
There's no surrender
Though his body says stop
His spirit cries - never!
Deep in our soul
A quiet ember
Know it's you against you
It's the paradox
That drives us on
It's a battle of wills
In the heat of attack
It's the passion that kills
The victory is yours alone
In the burning heart

In the burning Heart
Just about to burst
There's a quest for answers
An unquenchable thirst
In the darkest night
Rising like a spire
In the burning heart
The unmistakable fire
In the burning heart

June 22, 2007

Life is difficult with Stiff Person Syndrome.  Security became an issue for me.  Future uncertainty and unpredictable physical limitations had created a false assumption that my security was dependent on others, insurance, a house.  I had forgotten an early lesson learned with my SPS diagnosis.  There are no life guarantees (security) for anyone.    

Security became a personal question for me..."How much of me do I sacrifice for an illusion of security?"  The question became a challenge.  "How far am I willing to reach to live?"

I began to look inward and upward.  I prayed for wisdom and strength.  God heard me.

"Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or nothing." ~Helen Keller~

June 20, 2007 

Two Weddings and a Funeral...a recent motion picture I have not seen but find the title intriguing in an oxymoronic way.

This year I have been lax in keeping my SPS happenings current in this journal.  My life has been the starring role in a combination docudrama, sci-fi thriller, tear-jerker, and black comedy titled  Divorce, Marriage, and Graduation, cautionary in the SPS moronic way.  This film has yet to be rated or released to the public.

My "baby" graduated this year, the ending of an era and an exciting life beginning.  We arrived early to get an SPS perk of a handicapped parking spot.  She walked me to the stadium bleachers where I sat on the bottom row, using my multi-purpose hiking pole to save some seats.  I watched the busy movement of the filling stands with appreciation and a twinge of nostalgic envy for the capabilities of the human body.

My son married earlier this year.  Household tension coupled with wedding excitement created syndrome rigidity for me in fixing some dishes for the rehearsal dinner.  Love gave me the ability to pull it off.  I received compliments on my culinary skills without lacing my food with diazepam.

I had a heart-stopping moment when I realized I would have to walk up the alter steps of the church with my daughter-in-law's mother to light the two single candles for the unity candle lighting as participants in the wedding ceremony...public scrutiny...a definite SPS five-alarm catalyst for a carpet face-plant for me, not to mention fire hazard.

This required some planning and praying.  Working through SPS symptoms, cooking in the privacy of my home or inconspicuous socializing with wedding guests during the rehearsal dinner was a far cry from a spot-light stage appearance in the actual wedding.  I did not want the syndrome to embarrass me and especially my son for his special day.

Prayerfully calming myself, I pragmatically assessed the alter.  Luckily, I got to practice this feat during the rehearsal.  I discussed my fears with the bride's mother.  I asked her if we could join arms and walk up the steps together, light our candles, and link arms to descend.  Timing my medication dosage to peak for my cue, I managed to light my candle and descend the stairs to my seat...without 911 ambulance or firefighter interruption.

Love gifted me with the ability to watch my daughter's graduation and share in my son's wedding.  Life has its blessings.

With  many conflicting emotions, my marriage ends.  I hope we both find happiness and fulfillment in our future lives.  

I have much to share about living with SPS, starting over, fear, strength, setbacks, and achievement.  I am learning as I grow.

"Be not afraid of life. Believe that life is worth living, and your belief will help create the fact."
~Henry James~

 June 4, 2007

This weekend was the first weekend in years in which I was home alone for the entire weekend.  I was euphoric mingled with some trepidation.  I felt giddiness at the rediscovered independence of an eighteen-year-old, minus youthful energy, health, with a bend toward premeditated mischief.  With the creeping cover of darkness, I felt the nervous "possibilities" as a woman alone.  My mind conjured up "what if" SPS scenarios.  Surprisingly, I slept well.

I went to church with a light heart.  This was a good SPS day.  My senile body remembered how to move with more fluid normalcy.  It was hard to believe the previous Friday I was a quaking spasmodic shuffler on my soccer field walk, struggling with physical symptoms and squelching open-air queasiness, tight with the pain of rigidity.  

It felt good to dress up, pamper myself, and go as a solo act.  Independence and freedom...two beautiful concepts.  After church, I decided to indulge in a Wendy's picnic, choosing to sit outside at a neighboring visitors' center park.  Remembering Friday's struggles, I was heady with walking to a picnic table carrying my lunch and purse (My purse could double as a gravitational weight in space.) without my hiking poles.  The only consistency with SPS is the inconsistency in my life experiences.

I chose to sit and look at the Monument while I ate the American delicacy of a sandwich and "Would you like some fries with that?"  (Known in fast food circles as a combo meal.)  The ancient beauty of my Monument view was enhanced by a gentle breeze, the kind that caresses your skin, plays with your hair, and lifted up the scent of the perfume I was wearing...Sunflowers.  I felt feminine, pretty, and normal.  Life doesn't get much better.

Another American tradition, fast food is super-sized but our dollar value is not.  I could not eat my sandwich built for two but noticed a woman walking her dog nearby.  I asked and she accepted my invitation to share my chicken sandwich with her four-legged friend.  We enjoyed the friendly small-talk of passing strangers while her dog ate the offered half of my sandwich.  Normalcy...priceless.  As I walked unaided to dispose of my trash and back to my car, I felt carefree and happy, clutching this day's "get out of jail free card" in a light heart.

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Continuing my 2007 journey of rediscovery...crossing streets alone.

“A journey is like marriage. The certain way to be wrong is to think you control it.”
~John Steinbeck~

A continual reinforcing lesson is I cannot control my Stiff Person Syndrome symptoms.  I can only hope the medicating restraint of my prescriptions allows me a window of time to trick symptoms into a brief submission...along with mule-headed stubbornness and inborn craziness.

My weeks of walking had helped give momentary boosts to my syndrome-abused confidence.  I hadn't crossed a street by myself in over a decade.  I picked a chilly March day to try.

My goal...a two lane trek to the Greyhound station to pick up a bus ticket.  I mentally played coach to the fighter in me from the safety of my "corner" across the street.  This visual included toweling my face, rubbing my shoulders, and giving me the "go get 'em" pep talk mingled with strategy.  I stared at my opponent, SPS symptoms, in the opposite corner and thought today I stood a chance not to be ko'ed...well, prayerfully hoped.

Trying to subdue the panicked ticking of SPS timing to the red light stopping of the two-lane, one-way traffic, I waited for the next red light to begin my labored shuffle.  With my heart in my throat, I concentrated on the pavement of the road, willed my rigid feet to move, and implemented the feeble support of my two hiking poles in a hesitant, trembling shuffle resembling a walking satire.

I reached the other side but did not celebrate yet.  I needed to get back to my car.  Feeling some excitement, I picked up my ticket and headed back to the sidewalk point of my return.  Getting into the bus station buoyed my confidence, but I was still aware of the possible SPS pitfalls on my return crossing.  I followed the same plan and made it back to my car.

With tears in my eyes, I was trembling with elation, not spasm.  With shaking fingers, I dialed another stiff buddy and shared my jubilation.  I was so high on gratitude and accomplishment, I could have floated home.

I was bursting to share my news, "I crossed a street today."  Surprisingly, I got mixed feedback.  There was expressed pride and understanding in what this meant to me from several.  I received the concerned and stifling, "You should not have done that," from others.   I received a slap-in-the-face, "You are finally growing up," from one individual after three attempts to elicit some response of praise.  It deeply hurt.  As I expressed my hurt, I was told it was a joke?  Funny, I wasn't laughing. 

I started to realize years of physical dependence had created a bizarre co-dependency in some twisted ways.  While there may have been some happiness in my newfound independence struggles, it was also a threat, a change in what had become the "comfortable norm."  This was a sobering and troubling realization.  I had ceased to be an individual and had become an extension or appendage...a third arm. 

I wrote this expression years earlier:

Bird In A Cage

May 24, 2007

So much time has lapsed since my last entry...months.  I know some may have wondered if I had succumbed to Stiff Person Syndrome.  I am still on a "plateau" of physical wellness with the syndrome interspersed with the unpredictable symptom surprises that can arise within a day or for a day.

The beginning of this year I awakened.  Like an SPS Rip Van Winkle, I had slept through over a year, escaping my life within the numbing comfort of lengthy daily naps.  My body does tire easily from the syndrome and medication, but this was the sleep of escape, not of fatigue.  I lived each day by rote, losing me in apathy, possibly depression; but I performed amazingly well, deceiving myself and those close to me with upbeat robotic emotion. 

One day the life in my spirit defiantly resurrected.  I cannot explain how, but my awakening has been a several months' journey to where I am now.  It has not been easy.  I have experienced triumph, disappointment, and fallout.  The rediscovery of living, of me, has been an elated pinnacle coupled with gutter wrenching tears, but so worthwhile.  I hope to share some of my experiences with you.   

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Relearning to walk solo..."out there."

Lao did not know an SPS step can seem like a thousand miles and can take just as long.  "Usually," I can navigate the familiar perimeters of my home with occasional syndrome flares of "stuck" or spasmodic ripples allowing me to retreat to the safety of our blue recliner.  "Out there" looms with so many unknowns and SPS unpredictability.  This fearful realization leaves a heavy lump in my throat and a symptom screw tightening of my resistant muscles.  I prefer "out there" ventures with a safety prop...the company of another person.

For a time, as medication/treatment lessened my symptom severity, I would try to recapture lost abilities.  Longevity with the syndrome had me begin to choose (As I had a choice.) the ease of isolation comfort over the mental and physical exertion of trying.  I had started to let me slip away. 

With introspection, I was sickened to discover I had become indifferent, further limiting my world beyond the syndrome's physical limitations.  I decided to regain control of my attitude and work on my limitations...first walking alone "out there."

Several weeks ago, timing medication peak and armed with two hiking poles, I drove to the neighboring park's soccer fields.  I chose familiar territory with a safe falling surface, grassy terrain.  Small spasms and heightened rigidity accompanied my solitaire stepping to the crunch of the fine red gravel path around the fields.  I kept my eyes on the proximal path in front of me instead of gazing at the vastness of my surroundings...very open air.

Movement, distance, and fear were obstacles to be joined by crossing a cement sidewalk.  My body and mind balked as I took a swig of water, leaned against a tree, and studied the sidewalk for a pass doable for my SPS comfort range of perception, nonexistent at the moment.  I put both poles in front of me, took a cautious one-step with my left foot and slid my right foot to join.  I continued this self-choreographed maneuver until I crossed the sidewalk.  Accomplishment gave way to elation and a relaxation of some of my heightened symptoms.

I have continued these walks for the past several weeks, gaining confidence with time and success.  Not all of my walks are uneventful.  I learned long ago SPS is relentless in pursuit.  I had to knee walk across the sidewalk one day.  Some days I can walk effortlessly and look around at the scenery.  Other days my eyes are on the path while my brain registers the discomfort, fear, and pain of each step...but I am becoming empowered.

For the first time in years, I walked a block of Main Street and window shopped, accessed the bank interior, and have entered several business establishments, (Barnes and Nobles for a special event.), all by myself.  Reacquainted independence is a heady aphrodisiac in my life, even with the bullying whims of SPS.

January 18, 2007

Today was a physical reminder why I am unemployable.  I can morph into an immoveable object.  A very emotional telephone exchange last night knocked me with increased spasm and rigidity today.  With a defiant body stuck in soldier attention with on/off spasms, I yielded to pajama attire for the day.  R&R - rest and regroup.

Tomorrow is my infusion day.  I have my fingers crossed for a syndrome-friendly parking spot, ideally two feet from the hospital door.  Maybe I should go by ambulance.

January 16, 2007

I have been thinking about my previous entry, an accommodating part-time job within my limitations of Stiff Person Syndrome.  There are two obstacles to getting hired - a resume' and the job application...three if you count mandatory drug-screening and my prescription medications.  My drug test results may have a black van pull up to my house in the middle of the night with misinformed black-garbed strangers wrestling me to an undisclosed rehab...indefinitely.

There are the three personal references on most job applications.  With a jolt, I realize most of my current contacts are in the medical field...an experienced patient isn't in high demand.  Neighbors, social contacts, and friends can vouch I am a nice person without threat of perjury.  Dating service profiles: fun, witty, and adventuresome (SPS guarantee.), differ vastly from the preferably employable reliable, capable, and punctual...not syndrome doable for me.     

Unable to work since 1994, my job skills are beyond rusty, they are condemned.  Some of my newly-acquired skills are high pain tolerance (Management position?), an impressive layperson grasp of medical lingo, and unpredictable fall execution and injury.  This qualifies me for a lifetime ER pass.  

A resume' should not read like an entry from Ripley's Believe It Or Not..

January 14, 2007

Life has always been a journey of discovery. With my diagnosis of SPS, self-discovery has taken on a deeper meaning.  I continually define myself.  It can be a challenge to look in the mirror and see me, not the limitations of the syndrome.  The nature of Stiff Person symptoms, what perceptions or outside stimulus trip my symptom triggers, is like watching the rise and fall of a river after a storm...raging to lazy meandering, dramatic to peaceful...always changing.  Unpredictable.

SPS comfort seeks routine and familiarity, unfortunately at the expense of my personal growth.  Stagnant waters.  Last Thursday I realized I had let the previous months dissolve into comfortable routine, losing a sense of my individuality.  Outside pursuits were always with someone.  I started to feel like an extension of someone else instead of my own person.  Dependency can steal autonomy.  I decided on a lone venture, a first in a long time.  The first of hopeful future lone jaunts.  Alert Homeland Security.

It was a good day so confidence was high.  Running some errands, it was euphoric to exchange quips with strangers and share laughter as an emancipated adult.  An obstacle for me had been getting into Barnes & Nobles by myself.  I made the trek across the asphalt, adrenaline accomplishment giving a boost to my medication.  I bought two almond biscotti in celebration and devoured them both.

On a whim, I wondered about minimal part-time work.  It wouldn't be for money, but for social interaction outside of the medical community.  Truthfully, I don't know if I could but I wanted to try within my limitations.  I went to a motel, three altogether.  I asked to speak to the managers.

One manager was more mature, old enough she wouldn't be ID'ed in a club.  I exchanged friendly banter with her and some patrons while waiting.  When I had her attention, I explained I had a neurological disorder, but would like to try 8-10 hours a week behind the desk.

Amazing.  I watched her animated smile melt into a frozen imitation of social politeness.  My thought was she is acting like a chef of an exclusive restaurant and I am a vendor (back-street pusher) of day-old bread and blackened bananas.  She could not "see" my disability, but hearing I had "physical challenges" demoted my worth to the damaged goods section of a thrift store in the bad end of town.

Day-old bread is still good and a bargain.  Blackened bananas make the best banana nut bread.  Trash is recycled.  Disabled does not equal dispensable.  I am a member of humanity...maybe with a guest membership?  My worth cannot be measured by a time clock, a bank book, talent, or ability.  If so, my worth was at a disability before SPS onset.  The measure of a man is his soul.

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Tis true my form is something odd.
But blaming me is blaming God;
Could I create myself anew,
I would not fail in pleasing you.
If I could reach from pole to pole,
Or grasp the ocean with a span,
I would be measured by the soul,
The mind's the standard of the man. 

A poem often quoted by John Merrick, known as "The Elephant Man."

January 5, 2007

Traveling with SPS is often a self-foray...symptom Vikings plundering my mental stability and physical well-being.  My husband and I spent a couple of days with his mom.  I always try to "blend" into a perception of health and normalcy.  Sometimes it is easy to do.  Other times?

We spent the day before we left out and about.  Holding my husband's hand, I managed to project an image of vitality as we enjoyed a jaunt with his mom.  Whenever I play...I usually pay.  As long as I am able, the price is often worth it. 

I woke yesterday feeling the syndrome effects of my "day out."  Bending to tie my shoes, increased rigidity set off ripples of back spasm.  While my mother-in-law was getting dressed, I had my hubby tie my shoes.  Spasms can be frightening for someone unfamiliar with the syndrome to observe.  I thought I had it made.  I need to learn not to "think."  (SPS presumptions.)

We had our clothes in a carry-on pull tote.  I was using the tote as a surrogate walker.  Hubby was loaded down with a few incidentals and his mom was carrying a small plastic bag of our laundry.  As we stepped out of the elevator, I had a syndrome premonition warning that the trek to the car was going to be "one of those moments."

We needed to climb up some stairs to access our car on the upper parking level.  Hanging tightly to my hubby who was in the lead, I was attempting to pull up the half-empty tote when the movement effort triggered some back spasms.  In situations like these, I need to call the shots...what is my comfort zone, a feeling of control with an out-of-control body..  My husband thought he could take the tote and carry it.  This wasn't going to work as he was my safety hold and I could not let go of him.   I do not do change-ups when in spasmodic mode.

My mother-in-law, who is in her mid-seventies and recovering from a mild autumn stroke, was behind me trying to lift the carry-on tote.  I started laughing at the mental picture.  My imagination conjured my mother-in-law and me as toting a heavy recliner up some stairs by the effort we were exerting.

She was concerned and asked me if I was alright.  I had her feel my back, the rigid hardness of it after the spasm stopped when we reached the parking lot.  She looked at me in quizzical shock and asked, "Doesn't that hurt?"

I told her that it did.  She remarked, "It is good you can laugh about it."  It was a compliment.

I do know it is good to laugh.  Humor has been a vital survival coping tool in this journey with Stiff Person Syndrome.  I have had some adventures.

January 1, 2007

The beginning of a new year...resolutions, renewed hope, and promise.  New Year's Day is a time for introspection; a time of anticipation, a time of regret, a time of change...the birth of a fresh beginning.

Time.  Turning 49 with SPS, middle-age and chronic illness lends an urgent tempo to the rhythm of "tick-tock."  Childhood clock-waltzing becomes a frenzied jitterbug.  I realize I probably have more history than future in my life.  Unrealized goals are mentally edited for relevance.  I possess more focus and daring than I did in youthful pre-SPS.  I cherish the opportunities and gifts of time.

Beginning.  In hindsight, my life has been a continuation of beginnings and endings.  The toughest beginning was rebuilding my life after my Stiff Person diagnosis.  My SPS diagnosis taught me to live in the present.  I do not view beginnings by years but by each sunrise...the gift of each new day.

With the beginning of 2007, I resolve to further practice inward, outward, and upward.  Inward involves continual work on me...learning, reaching, trying, living forward.  Outward involves seeing the world outside of "me."  I want to stay interested and caring.  Upward is keeping my eyes on faith and hope.

"Every day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be." ~Marsha Petrie Sue~

Happy New Year.

Copyright © 2004-2010 Debra A. Richardson
All Rights Reserved

Revised January 2009