The first draft of this story was a
stomach-churning look at my pathetic attempts to reconnect with my past while
coming to grips with the frightening range of scenarios I see coming whenever I
ponder my future. After dropping the last word, I didn’t want to read that
mound of trash. Paying homage to Ernest Hemingway and Dan Gleason (see my
footnotes), I gathered up my favorite quips and clicked the rest into the
recycle bin.
The problem starts with my past.
How can I reflect on my past when I don’t
remember most of it? Boxes in my garage hold degrees, plaques, awards, and
other recognitions that pay homage to at least three successful careers. I’m
just a vagrant squatting in an empty home, afraid to look at most mementos because
I don’t know their real story. One plastic bin filled with old
photographs, marking the celebrations of special events and capturing the
warmth of everyday moments. I’m in many of those pictures; I probably took most
others. We no longer wait days or weeks to get film developed for the thrill of
sorting through bad shots and blurry images to find the few stuck in a box
filled with soon-to-be-old photographs. I remember that wave of excitement, but
not the few cherished keepsakes. Now, my computer is the crumbling cardboard
container of unfiltered scenes I can’t recall.
A recent visit with lifelong friends gave me the
chance to reminisce over shared memories while hopefully scratching out a few more.
The all-too-common phrase “I don’t remember that” hijacked conversations with its
stabbing reminder: Those are stories of
the life you will never recall. Stop
trying.
I can’t help it; I still make the attempts. Whenever
an inconspicuous memory surfaces, like the first Little League home run I hit for
Century Mirror and Glass, I
smirk while replaying the snapshot. Those gems are rare, a reminder that
shatters my smile while I stare into their history. Do I remember those moments
because my mind filled that void with a creative story built upon old pictures,
something others remember and told me the story, or my desperate need to hold
something from the past?
More than a few broken slabs reflect my past
mistakes and shattered innocence. Despite their disturbing cue, I treasure how my
mind dredges them up without warning–welcoming that feeling because they prove
I once existed.
During my rewrite, I repeated the question, “How
can I face looking back?” The answer came to me as 2499, a token shaped by wild
stories and broken slabs.
Marking yesterday is not enough. Why struggle to embrace
days gone by when I can hardly stomach the fact that they are all I am? Their power
is inconsequential compared to the mental thrust my hyperactive mind creates
when it looks forward.
Did I ever look forward to something with
the same eagerness as Rogue on this past December 24, when she struggled to
sleep as promises of Christmas led a parade of emotions back-and-forth across
her frontal cortex? Back-and-forth and back-and-forth. Was there ever a time for
me when tomorrow held that same promise of delight? Perhaps I just went through
the motions because my mind echoed: This
is important. All I remember is my stupidity of screaming through each day
with wild abandon and disregard for a future where I could never see myself. When
I consider what my future holds, anxiety and enthusiasm battle for control of
my emotions.
I started to think my next story should be Pollyanna
and the Naysayer. I abandoned that approach in favor of 2499.
2499 is the solution to uproot my irrational
fears, the perfect remedy for my very realistic nightmares. Living in the
moment will simultaneously celebrate my past and future. In 2024, this quarter
century of living with multiple sclerosis, I will take you back to 1999.
Electrifying stories of adventure, intrigue, sex, and danger will animate those
months multiple sclerosis spent churning just below my surface, preparing to
erupt and overwhelm everything in its path. The fact that my memory is shit
will force me to retell history with creative expression of the facts I can
still piece together.
A World Without MS
is the National MS Society’s current theme; their initiatives and fundraising
efforts are geared toward that future. By 2499, multiple sclerosis will join smallpox
and rinderpest on the list of diseases declared eradicated by the World Health
Organization. Stories of my fight will be footnotes archived in the history of Notable Authors and Their Visions of
Tomorrow! In 2024, I’ll share visions with my readers, crafting fiction
that will make you smile, laugh, and shudder in fear at the possibilities as I shatter
your preconceptions of what our future holds in store for us.
Stories I write this year will show on my
interpretation of the past, while others invite you into my visions of the
future with tales of fiction set in the year 2499.
Make no mistake, everything I do under this umbrella
of 2499 will be selfish. I will address my demons in a very
public display in the hopes that it might help me heal. Silent suffering has been
a colossal failure. If my writings give you comfort, that’s even better. If
they entertain, great. If not, my apologies, but that won’t change a thing.
Every flashback I write, every tale of fiction I create, will follow with the
incessant pounding of my pleas for donations in support of our fight against
the devastating effects of multiple sclerosis.
After telling stories, both about my life before
multiple sclerosis nearly destroyed me and after science turned the tables, we
will celebrate our victories. I have a little more than nine months to plan and
organize the biggest party (to date) for NEVER STOP NEVER QUIT: the 25th
anniversary of the day I first heard the term “다발성 경화증 가능성” (possible multiple sclerosis).
It starts today.
If you enjoyed the story, please consider a donation to NEVER STOP NEVER QUIT.
100% of your donation will directly support our fight. We pay the cost of managing our foundation.
All donations are tax deductible to the extent allowed by law. You will receive a receipt.
Notes
Ernest Hemingway: “The first draft of anything is
shit.”
Dan Gleason: “If this were my movie, as soon as
this guy says that, the woman next to him pulls out a wet mackerel and slaps
him with it.”
September 29, 1899 – first doctor’s appointment
