Please donate to
support our fight.
Direct to our Bike
MS campaign: https://mssociety.donordrive.com/participant/Rogue
Other ways to donate
(100% of the money goes to our Bike MS campaign. I pay all administrative costs):
https://NeverStopNeverQuit.com/Donate
When I woke in the morning and tried to roll
over, everything hurt. Pain, numbness, and tingling were an indistinguishable
blend of reminders that my disease would never stop. Nor would I, so I fought
my way out of bed to see if the day’s issues would improve with activity or if
I was just going to have to live with them. I aborted my first attempt to stand
when that sense of vertigo threatened to send me falling forward. Every
reminder of my challenges with balance, every time I fall and smack my head
onto the ground (like I did the day before), is my MS blaring its declaration
of how it will never quit. Nor will I, so I took a moment to get my bearings. I
stood tall on the third try.
“It’s going to be a long day,” was the only thing
muttered before I dressed and shuffled into the kitchen. That was Saturday. One
cup of coffee later, I made my way outside and started pedaling for 2025’s Bike
MS–Kevin’s Version.
On Sunday, my morning routine of ailments was
pretty much the same, with the added twist of having ridden 100 miles in my
garage.
BEFORE
2024 was an emotional year, capped with my
garage-bound century ride. Oregon Bike MS was a couple of weeks prior, but I
waited until October 6. The date marked my 25th anniversary of leaving a Korean
hospital with a report that included the words 다발성 경화증 가능성. The English translation read
“possible multiple sclerosis.” I shared stories of the week leading up to and
the following month. My posts were emotional, not particularly jovial, but they
got the point across in the only way I knew how.
This year is lighthearted and festive! Yes, I
will continue to pepper my report with the harsh reality of multiple sclerosis.
It has to be this way because everything in my life reeks of MS.
2025 started with Garage
Dayz t-shirts.
I’m not going to lie. Seeing long-time friends
post pictures of themselves wearing a t-shirt with my image on it was pretty
cool (in a surreal way). Sitting in a bar, enjoying some post-ride beer and
food with Jamie, friends, and family, was even more bizarre. We were all
wearing shirts or hats sporting my Garage
Dayz image, as well as Rogue’s and my Never
Stop… Never Quit… For them handwriting! Here’s a recommendation: if you get
the opportunity to sell people apparel emblazoned with your picture and
handwriting, do it. It’s cool. The fact that 100% of the money earned from the
sale of those items goes to our fight is even better.
DURING
I pedaled for 7:34 over the course of 9 hours. As
my recumbent trike trainer crossed the virtual finish line, a part of me wanted
to keep going. Every joint in my body hurt, but I knew the pain would spike
when I stopped and tried to stand. Of course, the pain would get worse if I
kept cranking away. And that is a perfect recap of my fight.
If I stop, I’m going to suffer. If I
quit, I’m going to endure setbacks.
But…
If I keep going, I’m still going to
languish in the pain of multiple sclerosis. It will probably get worse. But…
The only way to overcome the
devastating effects of multiple sclerosis is if I Never Stop… Never Quit…, For them.
This ride was by far the greatest challenge of my
23-year Bike MS history. My mindset, however, was the most significant change.
My 2025 goal is to spotlight Bike MS as a pure celebration of everything I
stand for in this fight. And so, the rest of this report (the rest of this
entire season) will be highlights of how and why I am celebrating. My MS will
interrupt with stories of the pain and damage it yields, just like it does
throughout every day, but my resilience will keep splashing that shit-eating
grin on my face and into my words.
At 5:55 AM, the trek started
in (almost) pitch black. I say ‘almost’ because my 2025 setup included
multicolor lights flashing from my Super Bass Jobsite Speaker paired with my
iPad. Motivational music, movies, and random TV shows kept me entertained
throughout the day. My straight, slight incline was not a bike ride through the
lonely, winding roads of Western Oregon. This scene was cush, with a garage
full of motivation and mementos. Old bike MS jerseys hanging next to various
fitness equipment and bikes; mementos from my Army days, including my D Troop 1-6
Calvary guidon, my old SPH-4 flight helmet, and the black powder pistol from
one of my three consecutive years as Top Gun with 3-229th Aviation (Attack).
I needed every
distraction. In hindsight, I could have used more. There’s a normal level of MS
pain every day. Muscles that don’t work the way they used to, or work at all, but
still throb with reminders of their uselessness. Other muscles have to
compensate, which puts a strain on them as they pull joints in unintended
directions. Damage from past falls left me with permanently torn ligaments and
muscles. My fall the afternoon before the bike ride left me with a throbbing
head, swollen elbow, and bruised ribs.
That level of pain was
my starting point. The dysfunctional muscles were pulled and stretched against
their will. The good ones carried two or three times the effort of my ride.
Joints without the correct layout of ligaments and muscles cracked in ways
joints should not crack, especially not for 7:34 hours. My head hurt. My ribs
hurt. My elbow felt okay!
The best part was the fact that the grin I mentioned earlier (the
shit-eating one) never left my face. My ride was nothing but a celebration of
the fact that we are getting closer to finding a cure for this wretched
disease. Plus, I had donuts! My motivation was so high throughout the day that
I wasn’t hungry at all. But, did I mention the donuts? You don’t need to be
hungry to eat donuts. Three delicious glazed treats from Sesame Donuts!
AFTER
And that was Bike MS–Kevin’s
version. From around 6 AM to 3:15 in the afternoon, I smiled through 100 miles
of painful pedaling. I texted with Rogue, talked on the phone with my mom, and
had a visit with Jamie. I watched the new Superman movie (meh) and rocked out
to tunes. I posted the few videos I recorded to social media (they are now on my
YouTube channel under the 2025
Garage Dayz playlist). And of course I had donuts. Not a bad way to spend
your Saturday morning, huh?
When the energy of the
ride ended, all the MS pain rushed back. It took about 25 minutes to get off my
recumbent trike. My left ankle, the one with muscle loss and damage, swelled to
about twice its size when I finally was able to remove the bike shoe. It hurt even
to touch, let alone try to stand and put weight on it. In some awkward
acrobatic move, I managed to lift my body out of the bike and over the right
tire. Please don’t tell Jamie or my mom (they will get mad I did not mention
it), but I crawled back into my house and stretched out on the floor for about
10 minutes. Finally able to stand on my other leg, I somehow managed to get
into the bathroom and into a hot shower. When circulation finally returned, the
swelling dropped off almost completely. By the time Jamie arrived, I could put
weight on it. Remember, shhhh! Keep that part a secret.
Showered, cleaned up,
and over 8 pounds lighter, we headed out in our concert t-shirt swag for our post-ride
celebration. I said a little thanks in silence that I didn’t fall getting in or
out of my recumbent. As much as I am used to falling, it still hurts.
Every movement on Sunday
was slow. Tired muscles had turned to soreness, and aching joints had become
painful. I decided that cleaning up in my garage could wait until after brunch
with Jamie’s family, and then grocery shopping. That grin remained on my face
the entire time.
At night, when I sat at
my computer to start writing, cleanup became less of a concern…
NEXT
It’s Monday morning. I
was up until midnight writing my story, jarred awake at 4 AM by a flood of
words I wanted to add and changes I needed to make.
Slow, but not as slow
as yesterday. Painful and sore, but less so today. I tried to recount the
number of times I had been cautioned over the past week.
“Just be careful. Don’t
overdo it.” – I overdid it.
“If it gets to be too
much, just stop.” – It got to be too much. I kept writing.
“I don’t know why you
put yourself through that.” – That’s a longer story!
Why do I ride? The
short answer is because I can.
The longer answer is
because it’s one of the things I can still do. I can’t run. I can’t jump. I can’t
ride a bicycle. I can’t even ride my recumbent trike out on the street. I used
to be left-handed, but it really doesn’t work anymore. I can’t snap my fingers.
I can clap. I can’t lift my arm over my head. I can’t button my shirt. I can’t
hold a piece of food and cut it with a knife. I can’t lift a glass of water to
my lips. I don’t have enough control and coordination to consider myself
right-handed, but I switched a handful of those skills to the other side. If it
requires two hands, I probably can’t do it. What I can do, I embrace with as
much grit as possible. I plop my body down in the safety of my garage and pedal
at a hard, constant pace until the measuring stick says I can stop. I sit at my
computer and share my story into a microphone that transcribes the words for me.
The next infection I battle could make everything worse. The next fall,
accident, or other injury might raise my debilitation to a whole new level. If
I don’t face that challenge, secondary progressive multiple sclerosis will
continue to chip away at my form and function. When I can no longer do those things, I will figure out another way to do those things. That’s the first reason I ride. For me.
There are countless
people globally who can’t do those
things either. Many of them cannot
do what I still can, even with the strange modifications I need. Some can’t
stand; others can’t walk. Physical injuries will lead to more mobility
impairments. Infections will compound current issues and create new problems.
For too many, the trauma will blacken any hope they had for their future,
creating another elevated suicide statistic in the MS population. Warriors in
our community have told me how Never Stop… Never Quit… gives them hope,
encouraging the same incessant push I share in my stories, videos, and posts.
That’s the second reason I ride. For them.
Money. Donations. Pure
and simple. If I never realized another improvement in my progressive
debilitation, if I never received another bit of inspiring feedback, yet
everyone I ever connected with donated what they could in support of our fight,
I won. Donations will drive the funding necessary to develop treatments that improve
the lives of those living with MS. The money funneled into research on candidates
like tolebrutinib, a drug for treating non-relapsing secondary progressive
multiple sclerosis (that’s me). Tolebrutinib has demonstrated a significant delay
in disability progression. The FDA is scheduled to make an approval decision by
September 28. There are dozens of other drugs under active research and
development. The National MS Society provides funding and oversight to scientists,
academic medical centers, and researchers. The goal to better the lives of
those living with MS is merely a slice of the objectives the NMSS has in their
overall vision of a world free of MS. Developing treatments in the lab
alongside functional rehabilitative programs in our communities will improve
lives until we find the secrets to halting progression, regaining what has been
lost, and eventually preventing future onsets of multiple sclerosis. Two years
ago, I spoke at the Oregon Bike MS program after Day 1 of riding. I admitted
that I will never see a world free of MS because of the damage already done to
my body. Rogue’s memories of my suffering mean that, even if we cure the
disease tomorrow, she will never know a world free of MS because it is a part
of her life. But I hope that she will look upon the child born without fear of
developing this disease, who has never watched someone wither away after years
of incessant suffering. They will live their lives in joyful bliss. That’s the
third reason I ride. For them.
Like I said,
lighthearted and festive.
Now, it’s time for me
to focus on recovering my body so I can join my friends in McMinnville this
Saturday and celebrate another fantastic event!
Thank you for the
motivation and support.
With love,
Kevin
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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