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…®

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

 

She Redefined My Reason to Fight

 

Only your child can upend the values and tenets you have embraced for years. Rogue accomplished this without a discussion. She never questioned my convictions, nor did she offer alternatives.

She stated a fact.

Never Stop… Never Quit…

In 1993, one observation seeded the passion in me to confront the merciless onslaught of my foe. It was six and a half years before I faced my first enemy—multiple sclerosis.

Another decade would go by before I wrote a blog for the Department of Veterans Affairs MS Center of Excellence. It was my second submission. Never Stop, Never Quit shared that fated story. Little did I know what would happen after 14 more years. My story became a mantra; my mantra became our charity. Everywhere I go, whatever I do, I see that calling. It’s written on plaques in my home, embroidered into T-shirts, and even tattooed on my arm.

With an indifference to the impact her words would have on my life’s endeavor, she ran a finger across the mantra and said, “It should say for them.” I asked why she thought change was appropriate, but she only shrugged. After thinking about her declaration, I asked who “for them” represented. With a simple, “I don’t know,” Rogue chastised me for even raising the question. I could see the conversation in her eyes.

It’s so obvious, why would I waste time trying to explain myself?

She was right. It was obvious the moment those words passed her lips; I just needed time to understand how her comment, and everything she didn’t need to say, rang true.

Why do I fight?

    To increase awareness of our needs.

Why?

    To raise money.

Why?

    To fund research and development of treatment options.

Why?

    To overcome, cure, reverse, or prevent the debilitating effects of multiple sclerosis.

Why?

    …for them.

Why else do I fight?

    To reach out and connect with others fighting against multiple sclerosis.

Why?

    To increase awareness of the options, research, and support available.

Why?

    …for them.

Fighting for no other reason than to fight, destroying something simply so it no longer exists, even donating just to donate are exercises in futility if no one will reap the benefits of our sacrifices.

It was, is, and will always be for them.

Rebranding may take some time.

 

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

Episode 02 – I’m Afraid of the Dark

 

How to Thrive with this Disability

Episode 02 – I’m Afraid of the Dark

Watch my video: https://youtu.be/pyiWShBJTIk

Bullshit and rambling have no place in this recommendation, so I’ll be short and to the point.

Fumbling around in the dark, walking in a room without lights, is a recipe for disaster. My balance issues take concentration to overcome. There are three aspects to balance: visual (what you can see), vestibular (the three fluid-failed canals of your inner ear), and proprioceptive (movements and pressures on your body). I have one functioning sensory input, what I can see.

I don’t attempt to walk around in the dark. If I wake up in the middle of the night, there’s a light close to my bed. One command, “Alexa, night light on,” and I can see. Every room in my house as a light I can turn on using my voice.

In this day of insane technology, smart devices, and AI-assistance, I use mine to turn the lights on. It has a few other values, like controlling my music and cooking timers, but I speak to my Alexa device countless times a day to turn the lights on and off.

Use technology to your advantage.

If you don’t want to invest in too much, here are some low-cost ways to keep yourself safe:

Amazon Echo Pop (newest model): $39.99 (you can get a cheaper or use Rakuten to find a rebate).

Smart Plug: $18.99/4-pack (there are tons of options out there, this is what I use).

Don’t let MS leave you in the dark…

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

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!

 

Never Stop… Never Quit…^®

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

Episode 01 – No Longer a Game of Inches

How to Thrive with this Disability

Episode 01 – No Longer a Game of Inches

Watch my video: https://youtu.be/s0J-IRA966g

My fight against the devastating effects of multiple sclerosis is now a game of millimeters, 1.2 mm to be exact! Let me get to the point without too much rambling.

The difficulty in raising the front part of my left foot led to walking difficulties. Increased falls are a constant danger. My poor gait (the pattern my limbs move when I walk) created further problems, placing awkward strains on my joints and spine. Avalanches of issues began to put everyday living at risk. Hip and knee problems developed. I now have moderate scoliosis (sideways curvature of the spine).

This change began around 2012.

Foot drop was one of the first noticeable symptoms when I began to develop secondary progressive multiple sclerosis (SPMS). This issue predated the rest of the atrophy on my left side. Trips and falls became common occurrences before any formal SPMS diagnosis. Blah, blah, blah…I underwent multiple treatment and brace options before settling on the ankle foot orthosis (AFO).

The concept is simple. A semi-rigid carbon fiber medical device system sits under your foot, preventing it from angling down when your leg raises. Not perfect, but better!

Unrelated symptoms pop up in my life with multiple sclerosis on a regular/constant basis. Aches and pains become the effect without a direct correctable cause. Joint issues, scoliosis, you name it, they’re all there. That’s just life with multiple sclerosis. In the Army, we would say, “Suck it up and drive on.” So, I do.

Eleven years after finally receiving my first AFO, frustration over this off-balanced sensation got me thinking. My left leg feels longer. It feels longer because it is. 1.2 mm longer, to be exact. It’s called LLD, for Limb Length Discrepancy. According to the National Children’s Hospital webpage “Limb Length Discrepancy (LLD),” evaluation and treatment options should be considered “when the difference measures more than 1.5 to 2.0 centimeters.”

I have no medical training, and no medical professional ever raised this issue, but the 1.2 mm discrepancy caused by my AFO is the source of pain and imbalance in my gait. It is not the only source, but a significant cause. This is my personal diagnosis and opinion. At some point, I will review everything with a physical therapist or my doctor.

I purchased this Carbon Fiber Insole and slipped it into my right shoe. The change was instantaneous! I felt as if my balance footing was restored. My hip hurts less. I noticed a reduction in the times I catch my foot on the ground or swing it outward as I step. Increased confidence in my gait for the last four days is a welcomed reprieve from ever-worsening multiple sclerosis issues. Improvements are always welcome!! Combined with the benefits I received through my PoNS device therapy last year, I’ve pulled something back.

Take that, MS.

Here’s a link to the Carbon Fiber Insole I purchased: https://www.amazon.com/dp/B0BYNSN2Z9. Well worth every penny.

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

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!

 

Never Stop… Never Quit…^®

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

Episode 00 – Thinking out Loud

How to Thrive with this Disability

Episode 00 – Thinking out Loud

Watch my video: https://youtu.be/a83O_Nym99Q

Think of a time when you were doing one of the thousands of mundane tasks that get you through the day. Walking to check the mail. Writing an email. How about just getting out of bed in the middle of the night to go to the bathroom? Performing these tasks can be so routine that half the time you’re probably thinking about something else, just letting your mind drift away. Describing how you do them would probably qualify as the most monumentally boring part of any conversation.

There’s no such concept as monumentally boring when I do anything. With multiple sclerosis, if a task is not difficult to impossible, it is painful. If it doesn’t hurt now, I’m walking a razor’s edge on further injury to myself, someone else, or causing a whole crap load of damage.

Nevertheless, I continue to live. Some days, I even thrive. Like the old saying goes: Never Stop… Never Quit…!

After bike MS this year, when I was sending out my fundraising after action report emails, a longtime friend offered one of the greatest compliments. “I don’t know how you do it, KB.”

I get that on occasion. Sometimes, it’s a compliment (“I don’t know how you do it! That’s awesome!”). Other times, it’s a question (“I don’t know how you do it. Can you show me?”).

Living with a disability is a constant game of trying to trick the system to give me a bit of advantage. Take some time to share a few of my favorites with you. Helpful hints, useful gadgets, crafty tricks, they’ll come in all shapes and sizes. Whether obvious or crafty, these are the things that help me make it through the day with a smile on my face (as opposed to a frustrated, injured scowl).

I will write up a little blog post like this and recorded video to demonstrate.

Questions about something you want me to discuss? Recommendations or ideas for a new post? Drop me a DM on my social media or leave a comment.

These are things that help me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

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!

 

Never Stop… Never Quit…^®

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

Approaching the Close of My First Journey

My Dear Friends,

October 1999 was a month of turbulence and turmoil like no other. The images of me on both ends bear little resemblance to each other. At September’s end, I had the firmness of purpose necessary to advance in my career as an attack helicopter pilot and Air Cavalry troop commander. By November 1, multiple sclerosis erupted, stripping everything I thought important from me.

My commemoration of this 25th anniversary has been a storytelling revisit of the day-by-day events that redefined me. If you haven’t seen the flood of video posts on my social media accounts, you can check them all out on my YouTube collection: https://www.youtube.com/playlist?list=PLwMsWD-UtliW3mOlsFCYm46gE4ikkfa-o. This includes the Century Ride bike MS event that took place in my garage on October 6. My worsening MS will probably keep you off the road, but it can’t dampen my determination

I’m pausing my daily chronicle until that November 1 medical climax to Act 1 of my journey. This week focuses on who multiple sclerosis shaped me into over the past quarter-century.

·         Yesterday, I announced a permanent link to share free copies of my six published e-books. You can get them here: https://books.bookfunnel.com/neverstopneverquit.

·         On Tuesday, I will participate as a patient ambassador for Helius Medical Technologies, manufacturer of the PoNS device I used to strengthen and improve my walking. The webcast will take place on Tuesday, October 9, from 3 to 4 PM (Pacific time). Here’s a link to the event: https://teams.microsoft.com/l/virtualevent/750668f1-dbf8-444c-969c-d3dbf90d5266@db9b84b1-be3a-48ac-8cac-c53b7a4b72b8.

·         KATU News (ABC affiliate) will come to my house on Wednesday to conduct an interview. Their Everyday Heroes segment will honor Veterans Day by highlighting my military career, transition, and journey with multiple sclerosis. I will update everyone when the segment is aired.

·         A slew of special announcements and promotions will scatter themselves throughout the week. Stay tuned for more…

All my efforts have a singular purpose–to overcome the debilitating effects of multiple sclerosis.

For those battling the disease, I want to demonstrate the paths we can forge to do much more than just survive. We can thrive! Physical, mental, and emotional programs are much more than therapy. They are our lifeline, ones that I need to support and promote.

YOUR DONATIONS will fund the necessary research and development to develop a cure.

For our future, I want to make a positive sledgehammer impact in our efforts to defeat MS entirely. We will need to create a cure, for there is nothing right now that can completely halt, reverse, or even prevent multiple sclerosis. Creation efforts require talented researchers to research and develop treatments. To do that, I need to help raise the critical funding that will support these efforts as we make our way across the finish line.

YOU are one of the most essential pieces of this chain.

Everything I do comes back to my need to earn your valuable donations to support our fight. Your money will fund scientific research and development to create that cure. The massive array of programs needed to support and better those battling multiple sclerosis today require the donations I am asking from you today.

I will amplify my efforts to talk to talk as my body continues to walk the walk.

With my debilitation on full display, I will pursue our goal to create a world free of MS.

We need your donations and support to create the cure that will defeat MS before it destroys another generation.

Donate here: https://NeverStopNeverQuit.com/donate

Donate direct to the National MS Society: https://mssociety.donordrive.com/participant/Rogue

Either way, 100% of the money you donate will go to our fight (Rogue’s Bike MS campaign).

All donations are tax-deductible.

You can follow my story through blogs, videos, and social media posts. Everything is there for you to stay up-to-date or go back to the beginning.

My stories: https://NeverStopNeverQuit.blogspot.com

My videos: https://www.youtube.com/playlist?list=PLwMsWD-UtliW3mOlsFCYm46gE4ikkfa-o

My social media:

     https://www.instagram.com/KevJByrne

     https://www.facebook.com/NeverStopNeverQuit

     https://twitter.com/NStopNQuit

     https://linktr.ee/KevJByrne

Multiple sclerosis continues to decimate my body. Rehabilitation and training are a constant effort. It’s an informal contract between my body and me. I will delay the inevitable, using my time to help create that world free of MS our next generation deserves. Graphic displays telling my story are the best way I can raise awareness of our desperate need to find a cure.

Your support and donations are the critical next step in our fight to create a world free of MS. Please join us in 2024!

Love,

Kevin

Never Stop… Never Quit…

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!

Never Stop… Never Quit…®

NeverStopNeverQuit.com

The Mental, Physical, and Emotional Limits of MS

My Dear Friends,

Today is an off day, a chance to rest and recover from an event that deserves the lofty designation “one like no other.” In my battle against the debilitating effects of multiple sclerosis, Sunday was a victory in every sense of the word.

The physical challenge was obvious: ride 100 miles on my recumbent trike, mounted to a trainer in my garage. There was no easy way out. With a stationary trainer, my tire stops spinning the moment I cease pedaling. There was no coasting or extended downhill ramp where I could rest and recoup before the next stretch.

My ride began at dawn, with temperatures clinging to 44°.

Rest stop #1 was at the 14-mile mark, just under an hour in. This is a typical break early into any extended ride, just enough time to warm up my body and machine, making any tweaks needed for the rest of the day.

Far from being just “any extended ride,” my setup was uniquely tailored to meet an odd assortment of needs. I skipped some standard bike gear, like a helmet, gloves, or glasses. My recumbent trike remained in the garage, mounted to the trainer. There was no need to steer and no risk of crashing–two big reasons I can’t be out on the road anymore. My trade-off for no wind whipping a cool breeze across my overheated body was not having to lather suntan lotion or worry about sunburn. My lost opportunity to enjoy stunning countryside scenery was offset by the chance to binge-watch TV and movies on my tablet! Beyond that, it’s a lot like every other extended ride. Long, lonely stretches of nothing but the sound of my spinning bike sprocket grinding in its metal-on-metal clash with the bike chain, and a persistent hum of the rear tire as it rotated approximately 76,500 times throughout the day.

The second rest was after 1:40 hours, another 22 miles. It was not so much a scheduled stop, but an emergency pee break! The quick hop-off/hop-on plan fell to the wayside when I stepped back into my garage to the sound of metal clatters and joyous cheers! Nine Oregon bike MS family members were under a pop-up tent in my driveway, decorated with motivational signs and a table full of treats. My first thought was, “How long was I in the bathroom?” They swore it was a quick setup (maybe I fell asleep there…). Support for me was the only reason for their loving efforts. I savored every moment, wishing to spend more time celebrating. Alas, those final 64 miles would wait no longer.

After being fueled by three of the donuts my friends brought and charged from the energy they lathered me with, the next 64 miles was a straight shot that took 4:06 hours. Actually, I rode 63.8 before I stopped to set up my last-mile promotional video and fundraising appeal: https://youtu.be/40SOTIaY_D0.

Sunday was not the first bike MS century ride run from my garage. Covid restrictions in 2020 forced my revamp that year. MS demanded the concession this time. While the rest of the Oregon Chapter rode two weeks prior, layered MS symptoms kept me sidelined. Second-degree burns on my feet, a result of hand spasms while carrying boiling water, were a temporary setback. The atrophy on my left side could be a permanent restriction from the open road. If 2025 is another garage ride, I may need to up my decoration game!

Ceremonial pomp and theatrics are always a part of organized bike events. Grueling rides where you gotta dig deep for those next few miles resurface every year with tedious regularity. We all signed up for that game when we bought our bikes. Bike MS is different. When I ride, there is always a reason that this year has a greater impact than the past. October 6, 2024, was the pinnacle of my rides, spanning five states since 2003. Twenty-five years prior, on October 6, 1999, I first faced the words “possible multiple sclerosis.”

Watch me when I shared my Day 0 story: https://youtu.be/j_ASrGFi5X4.

I had no idea what MS had in store for me, much like I have no idea what it will throw at me tomorrow. This is what I know.

Multiple sclerosis will not stop its ruthless assault on my body. It has made me an example of what it will take from people, how it will twist and distort their existence until few can remember who they were before they got sick. Multiple sclerosis will continue to turn me into someone who will lose until, either through lengthy erosion or by an epic tragedy, it takes my life.

I will savor every fight until that day comes. No, I will not win, but my voice, words, and example can help create a world where we have defeated MS. That world will only exist when we design the cures to prevent this disease and develop ways to overcome its debilitating effects. Those creations will only come from a laboratory through scientific research and development. R&D will only be successful if we find the initiatives.

YOUR DONATIONS are one of the most essential pieces of this chain.

YOUR DONATIONS will fund the necessary research and development to develop a cure.

I wish my body had the energy to call every supporter and articulate our needs. The plan for my life in the next year, five years, ten years from now will never take shape because the thought of what MS will do to me before that time is terrifying.

I’m glad my body had enough in to ride on Sunday. Now, I want to use my words:

- first priority is thanking those who have already supported through generous donations directly to the National MS Society or through NEVER STOP NEVER QUIT (100% of all money goes to the MS Society). I have a few ideas, and I think my token of appreciation will be memorable.

- next up are more stories from 1999, telling you how I first navigated through the darkness. As you read about every experience and every setback, please remember that someone is going through a similar experience right now for the first time. It will happen again tomorrow, the next day, and the next until we create the cure.

- I will take time to describe what it’s like living this way. Changes and setbacks are just a part of life for me—I don’t give them a second thought—but you may be surprised to see how MS dominates even the most mundane parts of life. All the while, please remember that I am not the only one stuck with this future. Our numbers continue to grow as more people develop MS every day.

Multiple sclerosis uses clever tricks to chip away at my body and take my ability to participate in the moments that I hold dear. In 2024, it tried yet again to take bike MS from me. On October 6, I fought back. There are no small victories in the fight against the debilitating effects of multiple sclerosis. Every victory is a cause for celebration! My wins will become rarer as this disease continues its onslaught, but I am going to savor each one.

My debilitation is on full display. I will continue to share the physical, mental, and emotional anguish through every medium possible. Think of my ramblings as frightening tales of adversity surrounding moments of sarcasm and levity, all sprinkled with a constant edge of determination. In whatever way you receive my tales, please keep in mind the single message: We need your donations and support to create the cure that will defeat MS before it destroys another generation.

Direct to the National MS Society: https://mssociety.donordrive.com/participant/Rogue

Through our charity: https://NeverStopNeverQuit.com/donate

Either way, 100% of the money you donate will go our fight (Rogue’s Bike MS campaign).

All donations are tax-deductible.

Thank you for your continued love and support!

Never Stop… Never Quit…

Kevin

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!

Never Stop… Never Quit…®

NeverStopNeverQuit.com

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