Sharing my life experiences challenged with Stiff Person Syndrome and diabetes, two chronic and disabling disorders; living forward with determination and humor, flying with wings of hope..."in spite of."
I slid into 2013 from a very hectic and rewarding ending to 2012. Jamie Lee Curtis was on television discussing her new children’s book. I fell in love with the book’s title, becoming my resolutions for 2013 — a year of “firsts.” Giddy with the possibilities swirling in my head, common sense negotiated on a minimum of six. As always, the unpredictable elements of having SPS & brittle diabetes is a hovering storm cloud over my sunny dreams, but it makes for an interesting life. (!??!)
Balance was key in selecting my goals – physical challenge, mind stimulation, spiritual growth, life experience. January quickly passed working on a physical challenge. SPS unpredictability makes completion a Vegas bet. “The only failure is not to try.” On a friend’s invitation, I was introduced to an unexpected mind stimulation. I absolutely love it and look forward to future meetings, the possibilities.
I hope to explore some cultural avenues. Sharing a mutual love for the outdoors, a playing in the dirt buddy asked me, “Why?”
My answer was, “Life is a buffet. I want to taste different things.”
Recently I bought a very unique hourglass. It is fascinating to watch the sand slowly sift in the beginning to a rapid sinkhole as it empties. With a flip, I can watch it empty again. Life is not an hourglass. I do not get a second flip when the sand empties.
I am excited and a little anxious about this year – ”tries, sighs, and high fives.” In an evening celebration, I turn on an oldies music channel on the television and light a scented candle. I fire up the grill to cook steak, medium well coupled with a salad. Toasting life, my life, I take a sip of a great Merlot, thinking about where I have been and where I am going.
As 2013 unfolds… “step by step; day by day.”
“To get through the hardest journey we need take only one step at a time, but we must keep on stepping.” ~Chinese Proverb
“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.
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.
“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.”
“No one ever gets far unless he accomplishes the impossible at least once a day.” ~Elbert Hubbard
Life with Stiff Person Syndrome - deranged antibodies hijack my nervous system, casting me as the heroine in a heart-pulsating, action-packed reality thriller. Mundane normalcy takes on the adrenaline-surged challenges faced by Tom Cruise, aka Mr. Hunt, viewed at the end of this post in a 90-second movie trailer of Mission Impossible 2.
Unable to take part in a family rockwall climb a few years back, I sat and watched. In rapt appreciation, I noticed this very agile and limber young man free climb around the entire room, without a mishap. Gingerly grasping a new rock protrusion, he hesitated as he contemplated his next foothold in a simulation of rock climbing chess. Checkmate!
So many images resurrected in my mind of navigating my syndrome-captive body through the house, looking for a safe place for my foot, gauging a questionable security hold on the door ledge, sliding around the wall to the counter. SPS depleted my former limber agility and mental confidence. Syndrome perception distorted a single step-down as a deep ravine. Quaking with spasms and consuming fear, I "rock-climbed" every simple movement maneuver required during the early years of diagnosis, just going to the bathroom. Now?...though much better, there are those unpredictable days/moments.
The raspy SPS voice whispers in my ear, "Your mission, should you choose to take it, is to shower, dress, and get in your car to go to church. If you are captured or killed, I will disavow any knowledge of your action."
This particular morning, my syndrome-challenged body responds, "You've got to be kidding."
Gauging my footing, I step into the shower. A full-body spasm starts to build. I have a two-second window to nab some emergency meds, strategically laid on the back of the toilet, before I grab the soap dish handle as a white-knuckled handhold while I ride out the spasm on the tub floor. Gushing tub water fills my audio senses at my near fall. (Crumbling rock, hanging by a mere one-handed grasp.)
As the spasms subside, I carefully execute SPS handgrips with gingerly planned footholds to get out of the tub, dried and dressed. Past syndrome episodes come to mind of rock climbing through the house, scope, plan, step, grab, with the sweat of thought and exertion trickling down my back...a door jamb, knob, chair back...
Opening the front door for my going to church mission, I assess my body's current ability, canvass the terrain, tighten the grip on my gait aids, and plot a getting into the car maneuver.
All day...every day, SPS perception overload combined with physical limitations. My mission - living - if I choose to take it
. "Well this is not mission difficult Mr Hunt, its mission impossible. Difficult should be a walk in the park for you."
