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Lost Time – Finding Me

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Broken. Living years struggling with a defective body, my ‘normal’ life imploded around me, and finally, a broken spirit.  Darkness enveloped my being with an oppressive heaviness — defeat.  Emotionally, I collapsed under the weight.

Some small remaining spark of survival remained, igniting a will to live after years of yielding to apathetic depression.  I mattered.  I was alive.  I wanted a life.

After my Stiff Person Syndrome diagnosis, I immersed myself into marriage, my family, and others.  All of that was good for quite some time, but gradually through the years, I was living only for and through others.  I lost me and lost relevance.  It was time to nourish Debbie.

For many isolating years, I lived a virtual social life through my computer.  My children have always been my strongest support/reason; but they grew into their own adult lives.  I wanted, needed, to have ‘my’ life.  Finding a simple but nice apartment, I moved in by myself — my first solo pad in my entire life.  Well…not quite.  My diagnosis moved in with me.

Choosing to stay in my current locale, I had no one except my doctors.  Knowledgeable medical care was the lure that first drew me here.  Doctors familiar with Stiff Person Syndrome are as scarce as the disorder.  It is vital to my life to have good physicians.

My cozy little apartment I named, “My Healing Place.”  Getting involved in a Christian support group, I poured my soul in my journal handbook as I lay on the floor and sobbed years of pain-filled tears — a long overdue purging.

With my quirky creativity, I figured out ways to maneuver around my necessary places to be, asking for needed help when necessary, and dealt with syndrome episodes.  As a middle-age solo operative, this dumped on independence became empowering with achievement.

I began toting a weighted gym bag with one hand and hiking pole in another to access a gym to work on balance, strength, and flexibility, ‘in spite of’ curious stares.  SPS is always a formidable improv setting, creating some…interesting? situations.  Through the years (Yes, years.), my devised physical therapy has paid off.  However, though subdued, the syndrome still lurks in the shadows with surprise cameo appearances.

I loved the peaceful solitude of that little apartment.  Ate when I wanted, what I wanted, had control of the remote, only me to worry about.  Tranquility eased my physical symptoms.  I know the calm of my healing place helped me close the door on the pain/grief of so many losses in my life.  I looked toward my future with anticipation.

Joining in social settings, I enjoyed conversation with real people.  As time went on, I reconnected with old passions: outdoors, parks, picnics, camping and volunteering while discovering new loves: theatre, art, museums, and public speaking.  Living in isolation for so many years, I embrace the miracle and beauty of the simplest things while daring unknowns.  I have said, “Life is a buffet.  I want to sample many things.”

For two years, that apartment was my home.  One of my life mottos is “living forward.”  Like a child at Christmas, I am so busy opening up life’s gifts; I have taken a hiatus from my writing and syndrome outreach.  I am feeling the tug to become involved again, but not to the extent I was before.  I allowed it to become consuming.  I live with Stiff Person Syndrome, not for it.  Life is a challenge, but full, fun, and exciting.

I am Debbie.  Taking chances.  Making changes. Breaking Away.

© Debra A. Richardson

#raredisease #stiffpersonsyndrome #chronicillness #coping #liveforward

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5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Guest Blogger on NORD – Rare Disease Day

Debra-Richardson

 STIFF PERSON SYNDROME: A FIGHT TO THE FINISH LINE
February 14, 2013

I already view tomorrow as a triumph, crossing the finish line will mean many things to me.  Whatever happens, it is such a priviledge to reach a point in my 20+ years of daily living with the challenges of SPS to attempt something I thought was forever lost.  Whoever reads this, whatever life throws at you, the future is always speculation.  Never lose hope, heart, or the desire to try.

With love,

Debbie

Dedicated to many who have left prints on my heart & to God, my “refuge & strength.”

Febrary 28, 2013

Febrary 28, 2013

Mall – A Four-Letter Word

“Shopping is a woman thing. It’s a contact sport like football. Women enjoy the scrimmage, the noisy crowds, the danger of being trampled to death, and the ecstasy of the purchase.” ~Erma Bombeck

Female shopaholics squeeze into tight parking spaces, racing in a purposeful speed-walk to grab advertised bargains with a Christmas adrenaline frenzy into — the mall.  Christmas shopping at the mall — the big girl Walt Disney Park — admission only requires a valid credit card.  Doors swoosh open to an angelic choir singing “aaahhh!”

With Stiff Person Syndrome, the mall offers as many kicks and giggles as a pitch-black maze, feel-your-way-out, Halloween haunted house.  As usual, I “think” I have a mental grip of this deliberate assault on my SPS symptoms.  The City of Bedlam (parking lot), has no room to get in.  My handicap placard has become a worthless plastic trophy of disabled proclamation. Circling the lot with other determined “grab the first available spot” cars, we resemble airline jets waiting for the control center to give permission to land — not a good start.  Omen?

Parked in Penney’s Netherlands, I grab my two confidence-boosting gait aids, my hiking pole and wheeled backpack.  The kindness of a stranger navigates me across the road of Daytona racers as I enter — the mall.

The mall — a personal Stiff Person perception of red-alert-danger, my deranged neuro-inhibitory system begins its excited jangle.  The entire store is a writhing mass of movement — a bucket of poisonous snakes.  Bright lights bounce off the high gloss floors while my senses are acutely aware of the noise… all the chatter, closing cash registers, boisterous children.

The squatting GAD-antibodies know it’s party time.  I sense their arousal as they overpower my medicated nervous system.  Perception overload is giving shots of cheap tequila to the GAD jumping beans with handfuls of uppers.  I am hosting my own crash bar party at — the mall.  It may be Christmas but my nervous system is having a raucous Cinco de Mayo.  The antibodies are cranking up music for a Mexican Hat Dance.  My torso starts to tighten as I try to steady the emotional angst.  Just get the gift card, breathe, and leave.  My body will not allow me to free-stand in the long register lines today.

Trying to blend in, a lady with a stiffening gait, wheeled backpack, and hiking pole can look a little suspicious at Christmas… shoplifter? Another round of tequila for the antibodies.  It is “only” a small walkway but my body will not budge.  I navigate around clothing displays to find a more comfortable crossover.

Passing a catatonic gentleman sitting in a folding chair by makeup, I still have enough control of me to tease.  “Having fun?”  Life resurfaced in his responding smile.

An opening.  A wall of people are coming.  Steady.  Wait.  Pass behind them and take a deep breath. Polka-dot bras and seasonal panties greet me as I manage to get to shoes (ugly styles), moving to get my store gift card at the salon.  Acutely aware of my surroundings and attempting to control the inner growing assault of the getting high antibodies, my lower back is hurting with the back-bending contractions of “SPS Gone Wild – Christmas Break.”

Movement is getting harder, the extra meds are barely keeping me at the level I am, and my mind is getting tired of assessing the external while dealing with the internal.  Breathe.  I make it back to cosmetics and the dutiful husband is still sitting in the folding chair.  “Still here?”  He smiles but his comeback is a bored grumble.

The exit!  Stepping outside, I am on the wrong side of the store.  A long stretch of sidewalk taunts as the jumping beans are now bouncing with superball anticipation.  I hear whispers of having a pinata — my head on the sidewalk.  With the slow, deliberate steps of SPS, I concentrate on the border boundary as I lumber up the walk.  Squelching panic, it is another wrong exit.  I will have to go back into the store to exit number three.

Omitting repeated Stiff Person drama, my body is aching with stiffness and mini-spasm and my mental fortitude is stretched to the limit.  Home, lay down, recover.  This time, my kind stranger holds onto me as he guides me across the Daytona Speedway.  I just say that I have balance issues.

Away from mall overload puts a halt on the Cinco de Mayo in my nervous system.   At home, under my blankie, my body begins a slow relaxation recovery in sync with me calming my stimulus-raped senses… CSI-SPS.

Mall is a four-letter word.

Copyright © 2012

It is my heartfelt prayer that God’s love fills your heart with peace, joy, and hope.  May 2013 be a year of health and happiness. Merry Christmas, with love.

MIA – Missing In Action

“Only as high as I can reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be. ” ~Karen Ravn

Time does fly – on turbo jets!  I have not entered a blog post since summer.  Now I understand the facebook picture circulating of me as a missing person…

AWOL – absence without leave.  My body (bunkmate), left my life over two decades ago taking with it unhindered mobility, physical freedom, unlimited choices.  I was abandoned in the “you will never get out” boot camp of chronic illness – alone with (hushed whisper), Drill Sgt. Stiff Person Syndrome and Lt. Diabetes.

Somehow I adjust or take my licks, but I am still a defiant recruit.  With Sgt. SPS, you never want to hear “drop and give me…” or “move it!”  I am still learning about Sgt. SPS, his prominent role in my life, and boundaries.  With determination, response to meds, effort, and time, I am given precious furloughs – “me” time.  Boundaries can sometimes be breached in quirky creative ways.

In 2010, I opted for intensive training, a two-year introspection/restructuring of my life… equal to the grueling Navy Seal “Hell Week.”  I worked on my mind, healing my spirit, challenging my body.  This year, my furloughs have been diverse and far-reaching.  Time has gotten away from me, but not life.

From travels to Tampa and Savannah, Blue Ridge Mountains to the Rockies, Atlantic Ocean to the Great Lakes, most included family and friends.  Gym workouts, community classes, church, scavenger shopping, dinner outings, and various misadventures – correlated around my demanding medical schedule – captured by life.

With a blessed heart, I realized a dream – worth the fall, fatigue, re-energized arm neuropathy, and aching muscles… 2012 – my “tween” year.  So… my email is a dusty pile, my syndrome advocacy has stalled, and my blogs have been neglected because I have been MIA – missing in action.

In times of restful silence, my thoughts (and aches), view my Christmas tree with future dreams and reflective gratitude… “in spite of.”

Copyright © 2012

Touch Me

“A woman’s heart is a deep ocean of secrets.” ~Gloria Stuart

“I am middle-aged, chronically-ill, and disabled.  I am also a woman, with a woman’s heart.  I would like to share a short poem I wrote a few years ago.  First love? Lost love? Current love? Future love?  A combination of all? …an ocean of deep secrets.

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Touch Me

Touch my mind.
Share my thoughts.
Enter my dreams.
Know me.

Touch my soul.
Share my essence.
Enter my being.
Understand me.

Touch my heart.
Share my offering.
Enter my life.
Love me.

Take my breath.
Touch me.

Copyright © Debra A. Richardson

Finding Someone Like Me

The Mobility Project approached NORD regarding the mobility challenges of a rare disease for their ezine. It was an honor and a privilege to share my mobility challenges with Stiff Person Syndrome.

Finding Someone Like Me.
Understanding and Coping With the Challenges of Rare Diseases
By Cindy Horbrook
May 01, 2012

I wish to thank Cindy Horbrook for a well-written article and NORD for their referral.  (Steph, you are the best.)

I am very impressed with the scope of all the helpful resources made available by the Mobility Project. Please check out their site. As always, I have a deep gratitude for NORD and their continuing efforts to bring awareness of rare disease to patients, society and the medical community. In 1994, NORD was my first contact for information about my diagnosis.

Copyright © 2012