The Aftermath of Bike MS

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Direct to our Bike MS campaign: https://mssociety.donordrive.com/participant/Rogue

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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).

The garage floor was lined with purple shag carpeting, leftover from Rogue’s room renovation. Old walkers and canes rested next to signature wine bottle cases. Scattered around the bike were bottles of water, an emergency kit (thankfully, not needed), and fans to keep the garage from getting too stale. I got off my bike once at the 42-mile mark. It is slow and painful to climb in and out of my recumbent (not to mention dangerous), so I just stayed there for the other three breaks. Good thing I had my trusty pee bottle used to help manage my multiple-diverticula-damaged bladder! Blaring music, a dystopian assortment of random “stuff” strewn around an already cluttered garage, with the mix of a hundred miles of sweat and pee breaks wafting through the air. I think next year I’ll sell tickets to the event…

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…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

 

Two Months

When I post this blog, the clock starts.

Bike MS Oregon 2024 exceeded all expectations with another extraordinary event staged out of the Evergreen Aviation & Space Museum, located in beautiful McMinnville. On September 21, almost every cyclist completing the 100-mile century option finished in time to join the festivities that evening. Almost every cyclist…

I crossed an imaginary finish line 15 days later, my recumbent bicycle mounted on a trainer in my garage.

Worst to First

Sentimental reasons pushed last year’s ride back to October 6, the 25th anniversary of my first time exposed to the words “possible multiple sclerosis.” I struggled with that milestone and opted to remain reclusive, sharing the anxiety of my memories through a one-way channel of social media blogs and video clips. Overwhelming support for my efforts filled me with a twang of, “Man, I miss this.”

My lonely ride through the meandering roads and cresting hills of my garage this year will be the unofficial start of bike MS, one full week before everyone hits the road in still-beautiful McMinnville.

On September 13, I ride.

62 days. Less than 1,488 hours. Minutes, seconds, well, you get the point.

Preparations will go beyond attempting to turn my body into something capable of completing another century ride. 2025 will re-create something I have not felt in bike MS for some time. Pure, unadulterated celebration! I need to recapture the joy that is our fight. If I’m not having fun, if I’m not smiling, if I don’t share my celebration excitement, I’m fucked. My symptoms are worse than they were last year. Struggles and therapies to regain stamina in my walking only seemed to highlight the decline in my upper body, vision, bladder, etc., etc., etc. It doesn’t scare or threaten to fill me with rage. My failing physical condition makes me want to stand up center stage so that everyone can see the ear-to-ear smile on my face as I assert my defiance in the face of adversity.

There is no single phrase for my 2025 theme. Defiant Celebration is the closest, but it doesn’t capture every sway of emotion.

I usually set this quote at the end of my posts. When you read the words, try to imagine this moment as I am shouting from my desk.

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!

My left hand barely works; I don’t type (haven’t for years). Artificial intelligence and voice-to-text technology are great, but they don’t carry the volume of emotion surrounding my declaration. Picture me barking into the microphone, every word a deliberate overpronunciation. All the while, that smile persists.

Moments of adversity have created some of the most pivotal snapshots in my life. I lost count of the number of times my despair boiled over with reactions violating each of the seven deadly sins. I regret them, the damage they caused me, and the hurt I inflicted on others. I will never undo my stupidity, but I am learning from it and will build on the mountain of times I channeled hardships into resilience.

My courage and determination as I stare down the devastating effects of multiple sclerosis are what I celebrate in 2025. I will rejoice in solitude on September 13 so I can join my fellow MS warriors in McMinnville on September 20. Together, we will show the world that we will never stop riding and fundraising in support of our fight; we will never quit until another person never sits in stunned silence to read the words “possible multiple sclerosis.”

Today, I have two months. I’m going to do some of the typical stuff. Yes, I will subject you to my fundraising pleas for donations and support. No, they’re not going to address my struggles. You can see it in my body whenever I struggle to move. 2025 is hyper-focused on the momentum of my adrenaline and the glory of what we are doing in this fight.

Last year, I documented the events leading up to my diagnosis of multiple sclerosis in 1999. This year, I’m going to take you on a real-time adventure as I turn bike MS 2025 into a spectacle of excitement and celebration. I’m calling this tour Garage Dayz.

Step #1 – Branding the Mission

The MS Society has its jersey and T-shirt designs commemorating the event. Well, we are going to commemorate Garage Dayz.

Thanks to our partnership with Amazon Merch on Demand, you can get this commemorative swag (short-sleeved, long-sleeved, raglan, and more). This link will take you to the full list of items directly on their website. About five dollars from every purchase will go NEVER STOP NEVER QUIT, funding our donations in support of this fight.

Amazon.com: NEVER STOP NEVER QUIT 2025 Garage Dayz

Get yours today and post a picture on social media wearing this one-of-a-kind! Don’t forget to tag me. On the 13th, I will be out in Multnomah Village, decked out in my shirt as I enjoy a tasty beverage. I’m dying to see how many supporters will wear their Garage Dayz swag in solidarity.

I also designed a moisture-wicking shirt for sale in our Printify store (click here to visit) yesterday. When my shirt arrives, I’ll share a picture.

Step #2 – Setting the Mood

Curiosity set in when I started to think about what I could do in my garage to make it look like the insanely festive event this ride will be. It’s a good thing I have two months, an overly active imagination, and the 15-year-old daughter who inherited my need to showboat! Garage Dayz preparation will become an event in and of itself.

Step #3 – The Ride

We’ll talk more about this later, but I’m in it to ride 100 miles, update my supporters on the progress, and create a spark to remake the next stage of this fight.

I’ve talked too much already. I just want to put my blog post out and start celebrating the countdown. There is so much I want to do, hope to do, need to do. Thank you for being my constant source of motivation.

Never Stop… Never Quit…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Save the Date

First published March 1, 2022, revised May 27, 2025.

I will continue to update as the event comes closer.

There is a wave of frustration and anger (and sometimes violence) directed at insurance companies these days, fed up policyholders pushing back against suspect practices. I choose a different response to their methods.

A Party of the Ages!

When: Saturday, February 5, 2033

Place and Time: TBD

 

Dear Standard Insurance Company (all executives and employees),

Please save the date for my event: “Celebration of Tomorrow and Plan for an Exciting Future.”

Why February 2033?

My story begins on February 23, 2022, when one of your Senior Disability Benefits Analysts presented me with an offer regarding my long-term disability claim. He flattered me by taking a moment “to offer an opportunity to settle your claim in exchange for a lump-sum payment.”

It’s every little boy’s dream to be chosen for such an honored opportunity, especially since “The Standard does not routinely settle LTD claims for a number of reasons.” I won’t lie; I was tickled pink.

Unfortunately, after several rounds of misleading calculations and not-so-veiled threats, like “we know that you write books” and “if you do not accept the offer, you will still have to regularly validate your ongoing disability (to prevent fraud),” I still could not understand how you came to the lump-sum dollar amount presented. My math skills are usually on point, making this discrepancy all the more puzzling. I said it was wrong — he said it was right, showing me “the full three pages of the present value calculation you received.”

I thanked him, then showed him again, this time in detail, how his calculations were wrong.

And the Truth Shall Set You Free!

Your determined analyst persevered, taking my question regarding the deductible income adjustment to your actuarial department.

Imagine his surprise when the little scrapper discovered there was another variable not included in “the full three pages of the present value calculation!” Forget trying to imagine my surprise; I was not taken aback.

Apparently, “the present value calculation process incorporates actuarial mortality assumptions.”

So, since your team did so much hard work and determined the correct mortality assumptions for an individual living on disability with multiple sclerosis, I figured I would take the baton and do some more of that math I love so much.

By the calculation of your actuarial department, discounting for the time value of money, my life expectancy maxes out at 93 additional months. I will be dead sometime before the end of January 2033, never seeing the ripe old age of 62.

Let’s Just Pretend

I know your employees are smart, but please humor me for just a moment. What if I am that oddity who exceeds the medical expectations of Standard Insurance Company’s actuarial department?

That would be nice. I definitely want to celebrate such a milestone.

Therefore, please save the date. When the reaper’s stopwatch bottoms out on January 31, 2033, if I’m still here, I would like to celebrate with all my dear family, friends, and advocates at The Standard. Advanced planning like this may not be enough to clear everyone’s schedule on a Tuesday, so let’s push it to that Saturday: February 5, 2033.

There will be food, drinks, music, and lots of enthusiasm. I may even enjoy a piece of cake!

Every penny from my long-term disability after January 31, 2033, will go to a very public celebration of the fact that I am still thriving, not just because of my desire to Never Stop… Never Quit…, but thanks to the avalanche of support so many provide in our fight against the debilitating effects of multiple sclerosis.

In the Meantime

I have lots of party planning to do. Thank goodness it’s not for another 94 months. Formal invitations will follow as we get closer to the event.

In the meantime, here’s some wonderful reading for your actuarial department about the life expectancy of individuals living with multiple sclerosis. The National Institutes of Health, National Institute on Neurological Disorders and Stroke — Wow! Say that five times fast with a mouthful of crackers — published it in 2020, with recent revisions.

“Multiple Sclerosis”

https://www.ninds.nih.gov/health-information/disorders/multiple-sclerosis

What is Multiple Sclerosis?

Multiple sclerosis (MS) is a chronic neurological disorder. It is an autoimmune disorder, meaning that in MS the immune system—which normally protects us from viruses, bacteria, and other threats—mistakenly attacks healthy cells. MS symptoms usually begin in young adults, between the ages of 20 and 40. 

MS affects people differently. A small number of people with MS will have mild symptoms with little disability, whereas others will experience worsening symptoms that will lead to increased disability over time. Most people with MS have short periods of symptoms that resolve fully or partially after they appear. These periods are followed by long stretches without noticeable symptoms. Most people with MS have a normal life expectancy.

Yes, I will milk this for all it is worth, starting with “Save the Date” t-shirts: https://www.amazon.com/dp/B0FC7ZH4H3

Get yours today!

I endure enough challenges to deal with daily, so please don’t stack the deck against me more.

Please consider this my official decline of your opportunity.

On the off chance I am dead before February 2033, please extend my “Nice Job” to your actuarial department. But that’s not going to happen.

I hope you’ll still come to my party!

Kevin

 

This is not about what my life will be like when my fight is over.

I will never stop…

I will never quit…

I will do this for them.

Never Stop… Never Quit…^®

***

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100% of your donation will go to our fight. We pay the cost of managing our foundation.

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Building Upon an Inanimate Foundation

Today’s blog addresses three points: a declaration, a focus, and a calling.

Escape to the Lake 2003 was my first foray into bike MS, a solo trip completing the NMSS Western Pennsylvania Chapter’s ride from Pittsburgh to Lake Erie. Twenty-three more events across New York, Delaware, Washington, and here in Oregon afforded me the opportunity to ride with family, friends (old and new), and the most fantastic army of heroes ever assembled. Their legend will continue to grow in 2025.

Tales of what we accomplished were the subjects, in some form or fashion, of 197 separate blog stories. Lonely miles across blazing hot asphalt, post-ride hijinks and celebrations, tears of joy for the impact our effort continues to make—I could waste hours of your time revisiting every blessed moment I remember and never begin to scratch the surface!

The best I can offer at this point begins with one declaration.

2025 will be unprecedented.

Snippets of information will tease the tangible meaning behind this opening salvo, fed through a string of stories from now throughout the summer.

(more to come)

Rogue defined my focus before ’24 came to a close. Her statement “It should say for them” combines the persuasiveness of a seasoned debater’s calculated argument, backed by volumes of supporting data, with the flippancy of a matter-of-fact statement reiterating something I should have learned during my 1999 “Welcome to Multiple Sclerosis” in-briefing. It took 25 years, but I got it. In a world where it is the habitually gloomy who often has the loudest voices, complaining how there is nothing left to discover, nothing to say that hasn’t been said already, I offer you this.

Googling the phrase “It should say for them” yielded two results. Two. Rogue owns a tiny little niche in cyberspace for the moment. Enjoy the fame while you can, My Little Love, for it won’t last long.

Branding for them across NEVER STOP NEVER QUIT is moving at full throttle. Invigorated by Rogue’s mandate, everything we do has refreshed energy and focus. The results will be, well, unprecedented. In fact, here’s my first tease of what will happen. Before the end of our 2025 campaign, we will celebrate major market national branding (video, digital, print) of our mantra Never Stop… Never Quit… for them.

Who is “them,” and why do they deserve so much attention?

for them applies to countless souls within this absurd sphere of multiple sclerosis. Do you know someone fighting MS? Are they your spouse, parent, child, or extended family member? Perhaps they’re a friend, coworker, significant other, teammate, someone you’ve known forever, or a person you just met. Maybe you read about them, saw them on TV, or caught their blog. However you know them, their tenacity in the fight against the debilitating effects of multiple sclerosis touched you in a way you never thought possible. Perhaps you are the one with MS, and them is a spouse, parent, child, extended family member, friend, coworker, significant other, teammate, or someone you know, read about, saw on TV, or caught their blog. Or do you have an entirely different perspective when you catch the innocent expression of the baby who does not yet know about the pain and suffering multiple sclerosis will cause in their life? Whoever they are, I want to know about them.

My calling is for you to share the special people in your life who fall under that overarching justification for why we will never stop and what we will never quit. Rogue refused to put boundaries on “for them,” and neither did I. I’m asking you to send me the details on those who deserve recognition.

- Do you know someone fighting MS? Please tell me when they were diagnosed.

- Are they a special connection in our fight against MS? Please tell me what the relationship is to you.

- Please send me pictures, videos, descriptions, and stories (pictures and videos!). I would prefer you to send them privately to me (direct message, email, text). Whatever contact you have, wherever you read this calling, send your recognition. Please provide as much or as little as you want to share.

I will collect everything sent and build a tribute worthy of the claim “that is unprecedented.”

So that I don’t stain these words with unnecessary noise, I’ll keep this blog post short(ish) and sweet. The real work begins when my words post.

Today is January 18, 2025.

Bike MS Oregon is scheduled for September 20-21, 2025.

It’s 245 days until then.

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…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

 

Something Profound

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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