Writing is a complete waste of time when the
words don’t have a point; you achieve no purpose once you collect, shape, and
share them. Sheltered in place for more than a month, I had plenty to say. The
problem was an old friend’s resurgence. Bedlam, a sort of mental
frenzy without the negative connotations I apply to the Chaos
that runs through my mind. Bedlam does not have the same stigma.
It’s a benign, innocent, almost adorable way to describe the frenzy of activity
crowding my mind at any moment. Well, that’s the way it used to be.
Bedlam
has been a pesky little imp that hampers my efforts to look back in my search for
the one profound thing I need to celebrate.
Dozens of ideas, tens of thousands of words, ran
through my head in no discernible pattern. That “surge of creativity” created
the aftermath you expect from an explosion in such a concentrated space. The
carnage left scatterings of sentence fragments, incomplete thoughts, the occasional
random climax without rising tension, and a slew of other literary sins.
Part of me said, “Keep writing until you find
something,” but I refused to sift through my creations in search of salvageable
snippets. The argument “if you want to be a writer, you should write every day”
is helpful for some. I leaned towards the spirit of F. Scott Fitzgerald (“You
don’t write because you want to say something, you write because you have
something to say”).
Even now, when I’m trying to share, my mind
bounces through the Bedlam of notching another mental note—growing
morbid curiosity over how many people younger than me have died. What killed
them? Was it worse than my MS? How many more can I pass? (Fitzgerald drank
himself to death at 44). I don’t know why death has become a harmless thought
forever scrambling through my brain. I don’t fear it, nor do I look forward to
it. Nevertheless, the moment interrupts my train of thought. This one proves to
be only a temporary distraction…
Yes, I never had a desire to sift. Yes, I did it
anyway. I kept my body occupied for the last month while my brain dug through
the scrap heap.
What was I searching for?
A good story, maybe two. Anecdotes with positive
twists that shine a light on something profound.
Rogue is spending the week with her mom. Sudden
quiet gives me time to think, then scream, only to think again. Why is it so hard
to write a story about something? With so much shit, quality shit, racing
through my awareness, why have I spent days (now weeks months) toiling
over finding the perfect snippet in a haystack of moments?
What in there is profound?
I went to bed with that thought daring me to
attempt sleep. At 3:53 AM, an answer struck my awareness as fact, like a
statement so logical that we’re duped into believing it’s true. The fallacy “If
everything is special, then nothing’s special” might be accurate on occasion.
Heck, it could be correct in every situation I face–except this one.
If everything is special, [That’s it, KB. Stop
there.]
I’m amped up from a joyous holiday season, my
53rd birthday, the end of a blowout fundraising campaign, new beginnings, and
reflections on the impact so many of us have made. It was all so, well,
special.
Established standards and comforting habits no
longer apply. For now, I will just talk. When the dust settles, I’ll edit.
Maybe.
Yesterday
Please keep the fanfare to a minimum as I chronicle
my proudest achievements from 2024.
$31,609.26 is the final number Rogue and I raised
through our annual bike MS campaigns. The National MS Society remains a
valuable ally that will maximize our dollars donated by applying it across six
areas of concentration (details copied from How
Your Donation Makes A Difference):
— MS Navigator Program: employs highly
skilled, compassionate professionals who help connect you to the information,
resources and support needed to move your life with multiple sclerosis forward.
These supportive partners help you navigate the challenges of MS that are
unique to your situation.
— Education Programs and Library: helps
the Society provide accurate and current information to those affected by MS.
— Research: we’ve achieved more advances
in MS than have been achieved for any other neurological condition.
— The Pathways
to Cures Roadmap, endorsed by 30 global
organizations, is the plan to find MS cures.
— Support Groups help foster community for
people living with MS and their families.
— Advocacy activists shape public policy
and secure billions in federal research funding.
Since 2003, thousands of loving supporters have
helped me organize efforts to raise $872,871.36 to support the National MS
Society! That number is staggering. Thank you.
Further promotion of my fight against the
debilitating effects of multiple sclerosis came from Helius Medical
Technologies. In 2023, I took part in successful treatment with the PoNS®
Device (Portable Neuromodulation Stimulator). The device targets signals from
the brain through the central nervous system to improve gait (walking) function
in patients with MS, mild-to-moderate TBI, or those who have suffered a stroke.
I fall under two out of three categories (MS/TBI).
The treatment resulted in a marked improvement in
my walking and balance. More importantly, as my MS continued to progress over
the last 22 months, the benefits I gained from using the PoNS device have held!
I signed on as a patient advocate with Helius, eager to help promote and
represent their technology in any way possible. They captured my story, portraying
me far beyond just the PoNS, in several outstanding segments.
First, Helius used my story in their powerful marketing
and branding campaigns.
Next was with Portland ABC affiliate KATU, for their
Veterans Day Everyday Heroes segment. A big thanks to Wesleigh
Ogle and her outstanding coverage. I uploaded the segment to my YouTube channel
so that you can view
it through this link.
The third was a segment with Phil
Briggs, host of the CBS Eye on Veterans podcast. We talked about my
military life before multiple sclerosis, then the storybook journey from my
diagnosis to the incredible impact achieved by NEVER STOP NEVER QUIT. Here’s
a link to the complete episode.
Nothing is more comfortable than propping me in
front of strangers as I share my dirty little secrets, which makes these
opportunities so impactful for advancing our fight.
Tales of resilience in the face of adversity grow
stale without a constant flow of new hardships. As luck would have it, 2024
provided me with ample fodder! Bedlam continues its scamper
through my brain as I try to tell this story: if you hear I am dead any time
in the foreseeable future, your safe assumption is that it was an accident or
some other mishap. I’ll try my best to prevent that event. While my gait
has improved, there were still a handful of falls (The
Aftermath of Multiple Sclerosis), plus
second-degree burns from that pot of boiling water I spilled over my foot.
They happen, so let’s keep moving. I know the
arguments. I hear your voices saying, “You need to let someone else do that. You
do too much.” The only way I know the limit of what I can do is if I push
beyond that line. If I fail, I know how much I can do that day. Yes, I will
push beyond that mark tomorrow.
Like I said, ample fodder! Let’s get back to my
story.
Speaking of voices, one spoke up and changed everything.
On a random day, Rogue pointed to my signature logo in the most nonchalant way
possible.
Since my September 2014 blog “I
Can Feel Myself Becoming Right Handed,” this signature
has become a staple of my fight. My handwriting remains frozen in time, even as
multiple sclerosis robs me of that motor function. The image is everywhere:
T-shirts, hats, in my books, throughout my webpages, even framed on the wall in
my house. A constant reminder that I need to fight, crafted by one reason why.
“It should say For Them.”
The moment she spoke those words, I knew she was
right. Rogue chose not to clarify who “Them” were. There’s no need. My only
request was a handwriting sample of her words. In a flash, our new message was
born.
The digital image is updated. There is a new
framed logo on my wall. We made a few production samples, but clothing and
apparel will take a bit longer. That’s okay, I’ve got time.
My crowning highlight was 25 years in the making,
dating back to when I was an Air Cavalry officer. On October 6, 1999, I was
sitting in the commander’s jump seat of my Humvee on the highway back to Camp
Eagle, Korea. I opened the medical report of an MRI just completed at a
civilian hospital. My eyes skimmed past the top half written in Hangul and caught
three words from the technician’s summary: possible multiple sclerosis. What
happened in the years after that is the subject of the countless stories I continue
to spew out. In 2024, I recounted the events leading up to and following
October 6. It was the hardest story I ever told, but one I needed to share.
From D-7 to D+31, I retold those harrowing moments as they unfolded a
quarter-century ago. I uploaded my stories to YouTube, collected here: https://youtube.com/playlist?list=PLwMsWD-UtliVilOfcbm5ywHr5UgGqaDip&si=q-U1dsUHkyDR60hB.
Building on that day, my ultimate Fuck You to MS
was swiping back something it stole earlier in last year. Countless hours
rolling through the Oregon countryside is the hallmark of bike MS. Since 2003,
the event has been my most celebrated holiday. Only interrupted by one year
with a broken leg, I’ve continued a tradition that spanned Western
Pennsylvania, New York City, and Delaware before joining Oregon’s ride in 2008.
As secondary progressive multiple sclerosis continues to nibble away at my
body, my carefree days on the open road have gone the way of so many treasured
moments. In September, I considered Disposing
of My Hope for a Future before remembering my own
words: Never Stop… Never Quit….
Adversity gave way to a new tradition on October
6. Harking back to 2020 Covid restrictions, I rode the 100-mile century option
out of my garage! It was a long day, but luxurious amenities like streaming TV
and movies the entire way helped the hours pass. It was a lonely event until I returned
from a bathroom break to find a rally of supporters cheering me on from under a
rest stop tent.
How they got it set up so fast (or how long I was
in the bathroom), I do not know. It was a welcomed surprise indeed.
This past ride was all about my 25th anniversary.
Efforts to scale up the theme for 2025 will take a bit of creativity. Do I want
to be the first or last rider across the finish line? September 20-21 is just
around the corner. Planning starts in earnest before this story posts!
That was yesterday.
Today
Attention to My Body, My Mind, and My Little
Love drives everything I do. My focus between those three priorities shifts
back-and-forth often. “Throughout the day” is not an understatement. What does
it take to keep the spotlight shining while accomplishing as much as I did in
2024?
Whatever it is, I’m doing it wrong.
Like the guy who thinks he knows how to play
cards because he beats the computer three out of four times at solitaire, I’m
not very good at the game. My fitness obsession has funneled into a contest of
how long I can keep my Fitbit heart rate in the peak zone while on the cross
trainer. My diet swings between starvation and binge eating, focused on the
seven or eight items I buy in bulk. I’m running out of shows to binge watch, at
home and in the gym. When my daughter’s not with me, life is a Groundhog’s Day
I am desperate to escape but don’t know how to rally the energy. My social life
has shrunk to the people I mutter a few words to when I grab a couple of pints
at the pub. When Rogue is here, all my energy goes toward being present in her
life. As for the growing list of things we can’t do anymore, I fear it’s
destroying my chance to be enough. Will I ever be? It pulls me into a senseless
pity party when my fears, the same fears every father has, somehow feel
different because of my predicament.
I am frustrated with every today, but scared when
I consider how few I might have left. That Bedlam rattling
through my brain is always the same whimsical topic: death. Never my ending, it
always belongs to someone else. When my todays end, when my body can no longer
eke out this mind-numbing existence, tomorrows will still come. I will become a
disabled spectator to a world where I can no longer participate.
Tomorrow
Until those days arrive, and that will happen, my
purpose is to inject life into every tomorrow. My antics will make readers,
donors, supporters, and the ever-growing army of newfound followers itch with
excitement as I tease what is coming. When the calendar flips and tomorrow is
here, the Ooo’s and Aaah’s over what we accomplish will only die down when
replaced by the exclamation, “I wonder what he will do tomorrow!”
Tomorrow, my body will power through stagnation.
The elusive “things” I couldn’t do yesterday will be storied marks of the progress
in my fight.
Tomorrow, my mind will create breathtaking
moments that leave you yearning for more. Fresh stories are smoldering under
the surface right now, ready to explode onto my pages and whet your appetite
for fiction and fantasy. Then, when imagination turns to reality, tales of my
journey will strike your emotions in ways you never expected.
Tomorrow, My Little Love will be the same
adorable/bad ass/always-growing/never boring/once-in-a-lifetime superstar she
is today, only better. Every. Single. Day. My love for Rogue will energize and
inspire me to new levels in [take your pick]. Together, we will grasp hold of the
once-unreachable.
Tomorrow, NEVER STOP NEVER QUIT will redefine our
fight against the devastating effects of multiple sclerosis. Our support base, spanning
the globe, will pale in comparison. Marked promotions will generate a bounty of
new supporters and donors. The fundraising numbers we tease will be laughable
compared to the actual dollars we raise. Oregon bike MS 2025 will be the
epicenter of a movement rarely spoken of but never witnessed… until tomorrow.
I guarantee that tomorrow, Your
Donation Dollars Will Make A Difference.
When my final tomorrow leave me reflecting on
everything that happened yesterday, I will smile because my heart is content.
Today, I raise a glass to the greatest series of
tomorrows we will ever see!
How is that for profound?
Because it is a fight.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight for them!
Never Stop… Never Quit…®
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Shop, or Donate Today: https://NeverStopNeverQuit.com
