“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
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, my presumed longevity was so casually taken for granted. With a chronic illness, I came face-to-face with my mortality. 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!
Video: 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
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