A Moment

                          "Nothing valuable can be lost by taking time." ~Abraham Lincoln


Before my Stiff Person Syndrome diagnosis, I savored life as a super-sized--fries with that please--get it to go bagged rush. Hope they remembered ketchup; did I ask? I enjoyed life from the fast lane of juggling work, children, home with bites of vacation, make time for a book, stolen minutes of solitude. The future beckoned with slower paced promise, "the" time to enjoy life more than I already did.

Diagnosis was a brick wall crash splintering my windshield view of all the envisioned good times, crumpling my hectic now...gone in a moment. I could only look with grief through the intact rear view window of "what was." Crawling from my life's wreckage, busyness became surviving a day of symptoms, escalating doctor appointments, a future destiny of joy became deflated tires going nowhere.

It would be so easy to stay in a Comfort Inn in defeated complacency. I still had a little Daytona in my engine. I began to see possibility in overlooked slowtrotting, harnessed my wagon to a bony nag and began my rut-jarring life journey in unchartered territory. I did not expect the wonders of seeing the world through a slower pace of disabled challenge.

Time. What I have learned--an hour is an hour, frenzied sprint or savored stroll. A second is an eternity when twisted in painful spasm or a wonder when looking at a twinkling summer sky. My biggest regret? Rushing through life before my diagnosis and letting all the possibilities of a moment slip through my fingers because I did not take the time.

This summer I was traveling along an interstate. A road sign advertised "scenic overlook" ahead. Years of speeding by numerous scenic overlooks convicted me. I pulled over. I grabbed my camera, hiking pole, & surrogate wheeled backpack, "Rocky." I managed the slight downward graveled incline and took a moment to enjoy the view of the scenic picture heading this post.

A moment.

To realize the value of ONE YEAR, ask a student who has failed a grade.
To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.
To realize the value of ONE WEEK, ask an editor of a weekly newspaper.
To realize the value of ONE DAY, ask a daily wage labourer who has kids to feed.
To realize the value of ONE HOUR, ask the bride who is waiting to meet her groom.
To realize the value of ONE MINUTE, ask a person who has missed the train.
To realize the value of ONE SECOND, ask a person who has avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who has won a silver medal in the Olympics.

~Unknown

Copyright © 2012

Five Tips for Living Well with Chronic Illness

Five Tips for Living Well with Chronic Illness

I Am Alive!

“Every man dies - Not every man really lives.” ~William Ross Wallace

“No one ever finds life worth living - one has to make it worth living.” ~Unknown

"A life worth reliving."

Occasionally I will take a community class--fun, social, learn a new skill (?), mind expansion. A few years ago, the instructor of my chosen class gave us five minutes to write our epitaph. I pulled the above caption from the sincerity of my heart "in spite of" some of the cards fate had dealt me in life.

Watching my second child succumb to the cruelty of a terminal genetic neurological disorder, my Stiff Person Syndrome diagnosis was a mind-numbing moment due to the horrendous enormity of what I was facing, yet again. "Sudden Death" was a possible grim prognosis on the papers submitted to insurance for approval of treatment. In 1994, not having Internet access to some of the stark information about SPS did not further fuel the consuming burn of fear charring my spirit.

Love is a strong motivator, my family. Determination, prayer, and coming to terms struggled with the severity of my symptoms. In the stillness of the night, sleep eluded me as the reality of my diagnosis taunted the fears of my mind while my body ached with relentless pain. In an archaic medical article, I read a passage my heart embraced with hope. "The course is slowly progressive or indolent." I envisioned the lazy river of my childhood, a peaceful escape for me. It was during this time a truth relevant to every living person focused with clarity for me...

Tomorrow is never a guarantee for anyone. Today, this moment, is all anyone has. With good health, mortality, my presumed longevity, was so casually taken for granted. With a chronic illness, I came face-to-face with my immortality. I had two choices: 1) Live each day as execution day on death row. 2) Deeply appreciate and live for the moment. I chose the second option.

Years later, my prognosis of "Sudden Death" is still on paper in one of my medical record boxes. With the band aid fix of treatment and medication, my symptoms have improved. The Grim Reaper is still an ankle-biter keeping me grounded. In 2007 I had a near respiratory arrest in an emotional confrontation. I have had a few unexpected falls along with a couple episodes of full-body spasms, vicious reminders.

I am a 'brittle' diabetic. Diabetes is one of the syndrome's best friends, possibly lover. Yesterday I went from normal readings to a 457 before bed to wake to a sweating 37 at 3:30. I walked down the hall in a familiar nocturnal kitchen raid for my mini candy bars and a toddler grape juice. I woke this morning to sunshine, a rested body and gratitude. My sugar ranges are like the Wall Street Stock Exchange on crack. I am considering making my glucose readings a Vegas bet. But...

I am a well-loved woman, close to my family, have amazing grandchildren and loving friends. Blessed with imagination and a sense of humor, I laugh often. Life is joyful. Inquisitive, there is so much to learn, see, experience. When my meds peak, I make good use of my allotted time of 'functional' disability! Grateful, I embrace the comfort and blessings God continually gifts to me.

Recently, I enjoyed the freedom of a solo road trip. Cranking up a mix of tunes, my thoughts soared, my heart sang and the diversity of roadside beauty distracted my white line vigilance for a few seconds of rapt appreciation.

I am alive!


“I would rather live my life as if there is a God and die to find out there isn't, than live my life as if there isn't and die to find out there is.” ~Albert Camus



Copyright © 2012