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Being told I had ALS felt as if a rug had suddenly been pulled out from under me. My world changed all at once, with no way to turn it back.
That happened in 2010, and it was certainly a major
curveball in my life. But I’ve been living with curveballs for a long time now.
Each one offers a similar lesson: I can’t control everything around me. The
first lesson I remember was hiding in an empty paper bag when I was 11.
A few days before Halloween, the kids on my elementary
school playground were buzzing with excitement. We were having intense debates
about the best costume to wear; dressing as a hobo won the popular vote. We
also tried to guess who would win bragging rights for having collected the most
candy while trick-or-treating.
Pursuing candy dressed as a hobo
The big night finally arrived. At dusk, I met up with my
good friend, who lived next door, then we joined her older siblings to
trick-or-treat down the sidewalk. Our comical gang of hobos rang the doorbells
to the houses on our side of the street, then the opposite side, and even
ventured to the unfamiliar block of houses beyond our street.
All the while we laughed, guessed who was giving out the
best goodies, and marveled at the increasing weight of our trick-or-treat bags.
Mine was a recycled brown paper bag from a grocery store, the kind with two
thin paper handles. I remember how the handles dug into my fingers at stops as
the bag grew heavier and heavier.
Several hours later, filled with high spirits, we shuffled
home, gathering at my friend’s front door to examine our booty. I heard oohs
and aahs from the others, but when I opened my bag, I couldn’t believe
my eyes. I was staring through a large hole in the bottom. All I could see was
the doormat below — not the Halloween candy I was expecting.
I suddenly realized that during the evening, the weight of
my bag — plus my short stature — caused it to drag on the ground. Since I was
also trekking through damp grass, it all caused a hole that allowed my bag’s
contents to dribble out along our route.
The shock and disappointment of this loss put a pit in the
bottom of my stomach.
My brain swirled with thoughts of “That’s not fair!” But
turning to look at the dark sidewalk behind us, I knew I couldn’t retrace my
steps, replace the lost treats, or wind back the clock. The moment was gone.
Stay and play the game of life
That’s the thing about curveballs. They teach us the lessons
that life happens, and we can’t always be in control. As I wrote in my column “The
ALS Game Board of Life,” we can’t stomp away in anger. We have to move on,
making the best of our changed circumstances and new perspectives.
Like that disappointing Halloween, ALS teaches us lessons.
Let’s all continue to transition through life’s changes and
curveballs with ease and help each other live well while living with ALS.
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Dagmar Munn
ALS and Wellness Blog
A version of this post first appeared as my
column on the ALS News Today website.