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

Please follow my updates through social media:

https://NeverStopNeverQuit.com

https://www.instagram.com/KevJByrne

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

https://www.youtube.com/watch?v=tQQ9LT1tJYw&list=PLwMsWD-Utl...

https://linktr.ee/KevJByrne

What Is Still Within My Control?

My upper thighs braced my body against the bed as I peed. I was groggy from the medication taken just a few hours before. Stumbling would worsen everything; I don’t want to deal with that again. A little plastic purple cup on my nightstand refused to come into focus. I asked myself, “Do I really want to live this way?” As The Shiver spiked through my body, the answer, “not really,” ran through my brain without escaping as sound. No one else was anywhere in my house, so the answer was unnecessary. Responding would only make the situation weird. Weirder? More weird? Everything was weird enough.

Somewhere between one and three in the morning is expected for this routine. The urge to pee is the catalyst, but it’s not what you think. As a 50-something-year-old man (I’m not yet in my mid-50s, so I won’t use the term), the feared “prostate” rigmarole is not the point of my story. The bladder is an organ of interwoven muscles. Spasticity, tightness, weakness, and failure of muscles are common symptoms of multiple sclerosis. This combination introduces a myriad of bladder issues: frequency, urgency, incontinence, nocturia (waking up at night to urinate), hesitancy, double avoiding, AND (my favorite) multiple bladder diverticula. The condition describes the pouches, or sacs, that form in the bladder wall, similar to a hernia. One of these defective fibers can aggravate a person. Two or more can require medication, surgical treatment, or catheterization. I have six (at least).

I’m drifting off-topic. My question was about the medication at the bottom of that purple cup. One baclofen and two diphenhydramine tablets make up my cocktail to take as needed to get back to sleep. As becomes When just about every night. If not, my day would always begin sometime between one and three in the morning. My cocktail at bedtime does not last. You would think that trazodone, baclofen, and two diphenhydramine would be enough to simmer searing nerve endings and give me a chance for quality sleep.

Several times in my life, I have faced the question, “Do I really want to live this way?” while staring at the pile of pills amassed to get me through the day. Without fail, the answer is “No.” This time was different. When the little plastic cup came into focus through my sleepy eyes, I attempted to rationalize my need for medication.

“I need these pills if I want a full night of sleep.”

“I didn’t get back to sleep the night before, even with that stuff. Is it enough? Do I need more?”

“I need to get to sleep.”

“I need those drugs”—probably the four scariest words to ever run through my brain.

Drugs stir a very rational fear in me. Far too many personal experiences reinforce the horrors of drug addiction and abuse. Ongoing efforts to avoid becoming a statistic will never be victorious. At no point in my life will I feel secure to rise and say, “I have conquered every demon that threatens me with drug dependency and abuse!”

It will never stop… nor can I.

“I need” ran through my brain in 2017 as I stared down my AM/PM pill cases alongside my little baggie for midday dosing. That was my first encounter with The Shiver. I conducted my inventory:

2x100 mg amantadine tablets (to treat fatigue)

2x10 mg Ambien tablets (to help sleep)

6x10 mg baclofen tablets (to reduce spasticity throughout the day)

10 mg dalfampridine tablet (Ampyra, to aid walking)

8x25 mg diphenhydramine tablets (to reduce spasticity throughout the day)

The VA Healthcare System is an outstanding organization that has provided quality care for me since I retired in 2000. Much like other providers, there can be a tendency to treat conditions with medication. Year after year, as I moved from location to location, my medications continued to creep higher. Much to my chagrin, the VA was the first to work on correcting this problem. Ambien, a common sedative, became the first adjustment when my doctor rewrote my prescription for the less addictive trazodone. Arguing was pointless, for they had directives to restrict harmful medications. So, they cut me off—cold turkey.

Six days into my withdrawal, my body no longer craved my Ambien fix in the middle of the night. The entire time, I felt betrayed by my doctors for forcing this on me. “I’m not a drug addict fighting some addiction. I just need my Ambien.” As it turns out, I was dependent (addicted), until I no longer needed my Ambien.

Valued lessons only earn their title when you can apply them in a personal context.

In 2018, I had my second run-in with The Shiver. No one presented the moment; it just happened. I stood in my bedroom and stared into the face of 2x100 mg amantadine, a 100 mg trazodone tablet, 6x10 mg baclofen tablets, 2x10 mg dalfampridine tablets, and 8x25 mg diphenhydramine tablets.

My otherwise shitty holds on to this as one of my “Do I really want to live this way?” moments. One at a time, I played with my medication. If I could stand five days without the drug and nothing changed (positive or negative), I stopped taking it.

My amantadine tablets were the first to go. Nothing changed.

When I stopped taking my dalfampridine, nothing changed.

I stopped all six baclofen tablets, dropping my body into a solid week of withdrawals. On multiple occasions, I argued, “I’ll just take a few to get past this feeling.” Classic dependency. After a week, the itching stopped, but spasticity remained at night. I needed one, sometimes two, tablets for legitimate reasons, but cut my diphenhydramine down to two, sometimes four.

Taking charge of my medication needs pulled me a few steps back from that invisible cliff of dependency. I have never claimed victory over the threat of addiction, nor will I make that arrogant statement in the future. After chastising me for making adjustments to my medications without consultation, my doctor praised the results.

Six years have passed since I faced those demons. The time could have been seconds when I stared into The Shiver last week. For five days, spasticity has not been present in the middle of the night, just the dependency on those pills. I was up before each dawn, scratching that urge buried just beneath my skin. Dependency leads to addiction; withdrawal reflects dependency. I don’t need the pills, but I wanted them.

That’s not reason enough to give in.

Note 1: Oh, about the peeing thing. As a consequence of my multiple bladder diverticula, my doctors presented me with three options: medication, surgery, or a permanent catheter. Convinced that I was not quite there yet, I declined all. Throughout the day, I manage my need to urinate before it becomes uncontrollable. On a regular day, I pee 12-15 times. While annoying, it is manageable. I don’t awaken at night until the urge is irresistibly strong, as in “you’re not going be able to get up and walk to the bathroom” strong. My handy urine collection bottle rests on my nightstand, next to my little plastic cup with one baclofen and two diphenhydramine sat (unused for five days). When I get up two, three, or four times a night to pee, I unscrew the cap and brace my body against the bed. It’s a minor consolation to make so that I don’t need more drugs, surgery, or a permanent catheter.

Note 2: Stories of my treacherous dance with drug dependency and addiction should stand alone like a well-crafted sermon preaching rejection of the temptation of sin. While you might think that my pee bottle sidebar waters down (pun intended) the rest of my blog, there is a connection. At 5:39 AM, my body realized more sleep was not in the cards. After a mere six hours in bed, I crawled out from under the covers for my all-too-often ritual. In a literal “Aha!” moment, I realized my six hours of sleep were unbroken. There were no pins and needles in my body pulling me from my sleep so I could pee, so I could take more medicine, so I could go back to sleep.

That was the sixth night. A sample size of one means nothing, but it sure does send my imagination into overdrive. Correlation does not imply causation, but it sure does put a spotlight on tonight… And the next… And the next… Can I reduce my dependency on medications that, though beneficial in the past, hamper my body’s ability to repair itself?

Note 3: One remarkable byproduct of the damaging effects of my multiple sclerosis is that I can no longer type my stories, blogs, and thoughts. I use voice-to-text software to capture my words. I often think aloud before ever intending to write. The question, “Can I reduce my dependency on medications that, though beneficial in the past, hamper my body’s ability to repair itself?” was an accidental transcription, never meant to be a thought I would share.

My body’s ability to repair itself.

How am I ever going to get that obsession out of my mind?

To be continued.

Tonight is the seventh night.

Note 4: The day began at 6:45. My Fitbit logged 7:17 hours of sleep, 1 hour total time awake, got out of bed one time to pee. In my world of multiple sclerosis, that is an excellent night of sleep!

To be continued, I’m sure.

 

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, come hell or high water, I will ride again!

 

Never Stop… Never Quit…®

Please donate today: https://mssociety.donordrive.com/participant/Rogue

 

Disposing of My Hope for a Future

Did you know that selling items through eBay for Charity has dual benefits? Proceeds from the sale go to your designated charity (benefit #1) while you get the tax deduction for your donation (benefit #2). Everybody wins!

NEVER STOP NEVER QUIT is a registered charity under this program. Have items you want to get rid of? Want to support our fight against the devastating effects of multiple sclerosis? Look no further than this fantastic program: https://charity.ebay.com/charity/i/NEVER-STOP-NEVER-QUIT/121016.

My promotional spot is over. Back to the story.

I always want to support our fight. It’s kind of my thing.

Progressing my MS has created some items in my life that I no longer need.

Fifteen years ago, I lost the ability to ride a bicycle without serious injury. My solution was to trade for a recumbent bike.

In 2012, I lost the ability to ride a recumbent trike without serious injury. My solution was to trade for a recumbent tricycle.

This year marks the loss of my ability to ride a fucking tricycle. Without another downgrade option, my solution was to sell my Catrike Expedition. Back over to eBay for Charity. I did my research and set a fair starting price. Thanks to my master’s degree in English and Creative Writing, I crafted a titillating narrative for my posting. It was a masterpiece that would soften even the most miserly curmudgeon and make them want to bid hundreds, nay thousands, of dollars over my starting price. I took a few pictures of my trike and the accessories collection to go with it.

My hands shook with fear as I scrolled through my smart phone, looking for the perfect shot. Grainy, poorly staged images failed to capture the saving grace that yellow racer provided when it swooped into my life twelve years ago. I circled the garage, photographing from every angle, hoping to capture something better. The constant urge to cry pounded in my head.

You can even ride a tricycle.

MS has taken so much from me and shows no sign of easing its assault. Offering my trike as a sacrifice would not satisfy its appetite. It won’t ask for more, it will just take.

My anger grew, directed at the entire swath of issues MS layers over my life. Everything that it took, is taking, and will take, pounded in my brain. I took his seat in the basket of my trike before I passed out. My options were obvious.

1 - Stop.

2 - Quit.

3 - Whatever option my body can piece together that is the stark contrast of stopping and quitting.

Maybe I put my trike back on the indoor trainer. After the second-degree burns on my toes heal and I can put my bike shoes on, I will ride in the garage again, as I did during the pandemic. When my legs are stronger, I can upgrade to a closed track. When my arm is stronger, I can move on to a safe stretch of road. When next year rolls around, I can take part in bike MS 2025.

Not if, when. The ifs come later if this turns into a striking victory for my efforts to Never Stop… Never Quit…, my message becomes more powerful. If this is another of my tragic, painful catastrophes on the Oregon asphalt, the need to protect the next generation becomes more poignant.

I scrapped my draft eBay for Charity posting, put my trike and gear back into their proper holding area, and then came in to write my story.

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, come hell or high water, I will ride again!

 

Never Stop… Never Quit…®

Please donate today: https://mssociety.donordrive.com/participant/Rogue

 

We Will Never Find a Cure

(Click on the picture if you are not squeamish)

Four piggies reinforced my dilemma.

“How did you burn just the ends of your toes? Did you dip your foot in the boiling water?”

I chuckled at the obvious sarcasm, my first lighthearted moment since the accident. Moments passed, two seconds, five seconds, and then I realized the ER doctor was not cracking a joke. Either assessing my potential for self-harm, an attempt to get the truth on domestic abuse, or pure morbid curiosity, she paused her examination and waited for my answer. I stumbled through my explanation of the physics (the pot spilled in front; my foot was extended and just caught the splash edge but missed the heavy pot and most of the water). Another pause, long enough to make me uncomfortable, before her tiny shoulder shrug dismissed the conversation and sent her back to the task at hand. She believed me, or at least heard enough of my rambling to realize a better answer wasn’t coming.

Second-degree burns on four toes of my right foot are the latest complication of my multiple sclerosis. Muscle spasms, weakness, and trouble with coordination were the symptoms that sent boiling water and penne pasta across my kitchen floor and over the tips of my piggies. The only way to prevent this from happening again is for me to stop boiling water. Stop cooking pasta. Stop making lunches for my daughter.

Stop doing things.

Stop living.

I will never stop, so all those options are out the window.

There are many ways to treat muscle spasms, weakness, and trouble with coordination. Rehabilitative therapy and medications can lessen the symptoms. I have realized success through both treatment options, improving my symptoms in the past. As my multiple sclerosis progresses, a countless array of symptoms worsens. Rehabilitative therapy and medications continue to work, but not enough. In terms of function, it’s a losing battle in the long run. Only by treating the root cause–multiple sclerosis–can we stem the tide.

Stopping multiple sclerosis will stave off the advancing debilitation for those of us fighting this disease. Reversing multiple sclerosis will give us a chance to live in a world we considered lost forever. Preventing multiple sclerosis will benefit generations to come, saving them from this nightmare. We can’t perform any of those three miracles because we cannot find the cure for multiple sclerosis because a cure for multiple sclerosis does not exist.

We must create a cure if we want to prevent or reverse the devastating effects of multiple sclerosis.

This June, a team of scientists published an updated Pathways to a Cure Roadmap. Their conclusion was simple and direct: “Scientific breakthroughs leading to MS cures will require strategic investments in research priorities and enhanced global collaboration among all stakeholders in the MS movement” (Bebo et al 5). We are close, but we’re not there yet. How close? No one knows because what they are trying to develop does not yet exist.

Yet.

I know Bruce Bebo. He is a crazy-smart doctor, the kind of smart we need to develop a Pathways to Cures. He is also a person who takes this disease personally and burns with the need to help those of us suffering. I feel as if it’s his personal charge to look out for each and every one of my 10 piggies. Until they are safe from the next MS-related scalding incident, he will not rest. He crafted the updated roadmap along with nine colleagues, using feedback and data from almost 200 scientists from industry and academia, healthcare providers, lawmakers, policymakers, funders, and the bounty of MS patients. This global MS movement involved 15 countries and will never quit until the cure is found (1).

What does this mean for me? Hang in there and keep fighting. Regardless of my pessimism right now, I need to give myself a fighting chance if I hope to celebrate when we reach that threshold and cross it.

What does this mean for us? Donate. We need to support Bruce and the armada of people and resources dedicated to finding the cure. In so many different ways, for so many different reasons, support comes down to money. Every donation helps. Every dollar matters.

Please support our fight to end the devastating effects of multiple sclerosis, now and forever: https://MSSociety.donordrive.com/participant/Rogue.

My piggies thank you!

Please follow my journey:

https://NeverStopNeverQuit.com

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

 

https://linktr.ee/KevJByrne

Works Cited

Bebo BF, Banwell BL, Whitacre CC, et al. The refined Pathways to Cures Research Roadmap for multiple sclerosis cures. Multiple Sclerosis Journal. 2024;0(0). doi:10.1177/13524585241266483

The Aftermath of Multiple Sclerosis

Multiple sclerosis means nothing to me. Unworthy of consideration, I don’t brood over what MS will do tomorrow. Not anymore. Instead, cheery moments pepper the days while teasing my senses with new encounters.

— “Definitely the best series I have ever streamed.”

— “I just made a new batch of my protein bread. Better than ever!”

— “He will be the perfect character in my next story about…”

My thoughts roll back to a common theme.

— “Rogue is going to love it.”

— “I wish Rogue was here to try this.”

— “I can’t wait to share my stories with Rogue.”

Living His Best Despite the Terrible Setbacks of Multiple Sclerosis

My hatred of a single word has never been greater than Despite. It is a harsh caveat to place on every storybook moment I experience. Such statements reveal that my life is a mere consequence. Sorry, that’s not for me. I choose to live in my romanticized world of denial, where happiness is normal and normal comes easy, not where I “get to experience happiness despite living with a chronic disease of the central nervous system.” No.

Subtle flashes of health and grand experiences make life worth living, even while I remain mired in an incessant and punishing sentence of life with multiple sclerosis. As much as it rules my life, I’m not bitter.

How I live is not the aftermath. I despise the nightmare for other reasons.

True fear follows consequences, be it dealing with the fallout of a single life-altering event Because of MS, or managing the repercussions of horrid aftereffects that reverberate on a constant (occasional/random/unexpected) cycle, again Because of MS.

The disease damages the myelin sheaths that cradle nerves in my brain and spine, wreaking havoc on my ability to run, walk, climb stairs, etc. That’s MS; every patient deals with that fact. And I negotiate the obstacles, discovering assisted or alternate ways to move. Concessions are part of life, I get it. A passionate desire to fight the inevitability of my decline forces me to accept assistance. I wear a brace on my leg to reduce the impact of foot drop. I have spent thousands of dollars out of pocket to take part in cutting-edge treatment programs. Elliptical and cross-training machines in the gym are part of my standard workout regimen (1 to 2 hours of intense exercise, 5 or 6 times a week) as attempts to delay the gremlins tearing me apart from within. There’s more, but you get the point. I will not go quietly…

The aftermath finally reveals itself when I am with Rogue. We are not active together, not how a daddy should be with his 14-year-old daughter. Much of our time is sedentary. Walking takes so much energy and exhausts me the moment we move. My daughter yearns to fly beyond her constraints yet acts content in the world she knows. She is a caged butterfly, but only with me. That image is terrifying.

Mirroring the loss in my left leg are the defects in my upper body. Years, possibly months away from being nothing more than a stump, a shadow of past glory, my left arm fades at a predictable pace. Resistance bands and physical therapy offer a hint of comfort. I need to feel like I tried, but my southpaw days are over. Since we have not yet developed that breakthrough treatment (but, damn, we are getting closer), I track the degradation in real-time. I’m not going to cry out, “Woe is me,” but I will continue sharing stories of my loss and flood my channels with images of my twisted form to raise the money those scientists need as they close in on that development.

Once more, Rogue suffers the aftermath of my inadequacies. I’ll say what she won’t, as she never stoops so low. My daughter is stuck with a father who cannot do the things she needs. Watching her dance around a volleyball court is an amazing display of talent and hard work. Fathers take pride in watching their daughters progress, boosted by the countless hours they spent knocking the ball around together. Laughter echoes across the court when they play a scratch one-on-one game. Every child remembers the day they first beat daddy.

Rogue does not have that. Instead, I watch from afar and hope someone else fills the role I can’t.

Attempts at everyday life, my bid to act, move, and live how I’m supposed to, often end up with me splayed across the floor. Over the past year, I’ve experienced at least ten falls that the judges would deem significant. At least four have bruised my left rib cage. I think I continue to aggravate an injury that has never healed–my ongoing cycle of pain and damage. I blacked out twice. Every time this happens, I dust myself off, wipe up the blood, and return to what I did before that minor inconvenience. My body hurts for a bit of (or significant) time afterward. Thousands of reminders echo the same message: “blah, blah, blah, life sucks, get over it, keep moving.” I keep moving. Continuous injury is more accurate than reinjury–my ongoing cycle of pain and damage. Despite, that evil word, never enters my vocabulary.

Then comes the aftermath.

Rogue cleaned blood in the garage this weekend after my last fall. The first thing I remembered was sitting on my bed, holding a towel to my face. She took care of everything until her mom came to pick her up. I shrug off the entire episode as “just another day” while she remains stuck with the memory of whatever happened. My daughter shouldn’t have to shoulder this much responsibility. I want a teenager to test the boundaries of my patience rather than caring for the frailty of my body. What I want doesn’t matter; she alone must face the consequences of a father battling multiple sclerosis. I don’t live Despite, but Rogue must live like this Because.

Bike MS is less than a month away! Morbid curiosity pushed me to try a short ride last Saturday to see how my body would hold up. My left side’s exponential breakdown makes it nearly impossible to ride, even on a recumbent tricycle. Searing pain from bruised ribs and a welt on my forehead that will not accept a bicycle helmet confronted me with a painful reality. My broken-down frame cannot ride this year.

MS has pushed and pushed, a constant battle to see how long it can push me out past the brink of sanity before the inevitability of a breakdown creates the aftermath I avoided for so long. I spent the last 24 hours debating my next move, hoping to unlock salvation before multiple sclerosis pushes me past my breaking point. Long gone is any hope for a deus ex machina that will deliver a solution before my reality collapses and sends me tumbling into madness.

Before the cliff gave way, before “something” had a chance to send me over that razor-thin lip, I jumped. The parachute risers are unattached, and my reserve is filled with peanut M&M’s to snack on during the long freefall.

The fact that I cannot ride in bike MS this year will become the reason we need to overcome the devastating effects of multiple sclerosis: it has destroyed the remaining piece of a past I used to refer to as me. “Fuck you, MS! This is why I ride” is gone. All that remains is “Fuck you, MS!” I’m okay with that. Without the safety of the only constant in my life since 2003, my jump sends me into a void where nothing is guaranteed.

I don’t want the cautious life, the easy path where I am guaranteed to morph into another tragic statistic who got dealt a bad hand, put up a good fight, set a noble example Despite, yet eventually mired into an inevitable collection of sad stories.

I refuse to be a voice without a voice, instead hiding behind my words. Crafting lives and forging replicas of Kevin has its place. My stories will continue to construct those roles and stock them with the reality my mind creates. The other reality, the one people can see, has suffered because of this deception. Accusations of bravery and strength in the face of multiple sclerosis leave me feeling like a fraud. The truth was chopped up and fertilized into the characters with the lives I had, wanted, feared, or dreamed about. There is no longer an correlation to any version of me.

From Scylla to Charybdis

Greek mythology shares the tale of Scylla and Charybdis, two monsters straddling the narrow waterway between Sicily and mainland Italy. Ships navigating this Strait of Messina face the horror of two deadly choices. Sail close to Scylla and the beast would pluck six sailors from your vessel; everyone else would live Despite the loss of those six. Navigate on the side of Charybdis and risk losing your entire ship to its deadly whirlpool, but you might just save everyone. All for nothing is the ultimate Because. No longer willing to continue with multiple sclerosis chipping away pieces of my existence, I faced Charybdis.

Perhaps historians will document my leap as a tragedy where I abandoned any reliance on futile gestures and tokens once meant to guide me toward a cursed future. “At least he said, ‘I tried.’ What a glorious life!”

Then again, the climax of their story (my story) could be the ultimate example of strength in the face of adversity, overcoming a once-dismal to usher in a new standard in personal care. “Everything changed when he said, ‘I’ll try.’ What a glorious life!”

A third option might lead to another Greek tragedy with a predictable yet fateful ending. If plummeting to a devastating conclusion is the outcome of my life choice, my obituary next year will note the end for a man who threw away 25 years of a “safe decline” in favor of a better way to go out. “In the end, he tried.”

Where Everything Goes from Here

A final answer to my resolution doesn’t matter. Nor does that ideal situation or the direction in which I’m leaning. None of them matter. At least, not now. My only concerns will remain My Body, My Mind, and My Little Love.

Everything will be mine to experience and savor. Because will replace Despite as my rationale for what I do every day. I will write stories. I will record videos. And I will leave a trail of breadcrumbs for you to follow. Join me as I undertake adventures, both big and small, because I am no longer concerned about the constraints multiple sclerosis places on me. Bear with me when I share some of the horrific aspects of my life Because of the devastating effects that multiple sclerosis blankets me with. Without modesty or humility, you will see just how far multiple sclerosis has pushed me. I hope you understand why I snapped and fought back.

Multiple sclerosis means more to me than I expected. This phase of my life is the Aftermath of Multiple Sclerosis.

My fight is not over. I will continue to fundraise for the National MS Society with the goal of ending this nightmare before it settles on the next generation. Bike MS will continue to be the cause we support. Maybe I will get back out there someday. If not, I will make it a constant reminder of why I fight: because of what multiple sclerosis took from me.

Please support our fight: https://MSSociety.donordrive.com/participant/Rogue

Please follow my journey:

https://NeverStopNeverQuit.com

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

 

https://linktr.ee/KevJByrne

Everything Is Completely F^#$’d Up

 

It’s not getting better, and it never will.

No other picture could capture my mood like this one. Welcome back to the emergency room, Kevin!

Countless times in the past, I came to that realization before dismissing my naysayer attitude. The devil on my shoulder, a persistent Beelzebub of Pessimism, tormented my thoughts every time I shared stories of small victories with my readers. After stumbling through the proverbial muck and mud created by the downpour of multiple sclerosis, navigating the countless obstacles encountered on my incessant climb up this avalanche-plagued gravestone, I rejoiced in my discoveries that led to conquering “it.”

Fools and dreamers are crushed under the heaviness of setbacks while still trying to react with an idiotic resiliency that fortifies their commitment and sharpens their efforts. It’s a sickening cycle we face again and again, over and over, until one of three things happens. They quit and move on–leaving one part of their life a failure. They fight countless setbacks with a barrage of recalibrated bursts until they die–that part of their legacy forever a failure. They win.

I am not going to win.

I am not going to quit.

Nature has not gifted me an option, but rather one unavoidable consequence for the life I squandered until October 6, 1999, the day I sat in the commander’s seat of a US Army Humvee, on my way back to Camp Eagle (H-401), and read those damning words: 다발성 경화증 가능성.

Words.

Regardless of the context, irrespective of the translation, no matter whose mouth they originate from, “You Have MS” is a gut punch to which there is no retaliation. My best attempt has been to personalize multiple sclerosis through words. I tried thousands of times. Describing the distortion of my body, I gave it shape and form because if it exists, it can become a target. Chronicling the 25 years of pain and anguish it has inflicted on my body, I shared its incessant damage because, if it causes suffering, others will despise it. Sharing the ongoing research and medical breakthroughs, I painted possibilities of a world free of MS because if we paint progress, the desire to reinforce the effort upticks.

But then, July turned to August. Emails and social media posts began to flood my senses with a simple, irritatingly Pavlovian message: Bike MS Is Coming! My mouth ran dry, in direct contrast to the classical condition response I clung to for the past 20 years.

“Fuck,” I said.

In an empty house, I finally broke down and let ’em have it. I directed my conversation at no one…nothing…everything…something. My focus neither stared at anything nor scanned for something. Like the cliché of a stereotypical nut-job, I roamed my house in search of a mark to spew my venom.

“I can’t do this anymore. My pain and anguish are well documented. Mounting levels are nothing more than another layer of the same shit. I’ve given up on the repetitive rise and crash of my hopes for the next breakthrough I will never see. Even if I’m not tired of saying it, who the hell wants to hear another season of my pissing and moaning? I don’t.”

Just like that, I was done.

After a quarter-century of living with MS, my breaking point was the thought of once again struggling to piece together a collapsed house of cards, then branding my re-cleansed work: Bigger–Better–Stronger–Faster. Not this year. The only version I can present in 2024 is smaller, weaker, and slower. All that remains is a chance to be better. Wholesome images of making life even a smidgen better parallel childlike fantasies of making it all better. But better for whom? Give up, Kevin. Just stop saying better.

At bike MS 2023, I spoke with the riders and supporters gathered Saturday night. Triumphs and celebrations fell to the wayside when the Prince of Darkness whispered from my shoulder and convinced me to admit, “I will never see a world free of MS. I will never see that. If MS is cured tomorrow, the damage that it has done to me is unrecoverable. The memories it has burned into my brain will never go away.”

Translation: I’m fucked.

I turned to my daughter and let everyone in on the dirty little secret they already knew. “Rogue was born into this. She didn’t earn it, nor did she ask for it. But she will never see a world free of MS because of the memories of her dad….” You get the idea. You can watch the video, but here’s the translation: She’s fucked, as well.

Actually, please watch this short, 1:45-minute clip from that speech (https://www.youtube.com/watch?v=aZoHsIKFKWg).

Long after we find a cure for MS, when the carnival atmosphere is no longer necessary because the world has shifted its attention to a new motif, a child will be born. Maybe they will ask Rogue to tell them a story; perhaps she will need to share her memories of “back in the day.” The story will be about me, and I hope the memory will portray my time in a cheerful light. Something will spark the need for discussion about my disabilities.

“What was the matter with him?” they might ask.

“Oh, my daddy struggled with multiple sclerosis for a long, long time.” Furled brows will betray the little one’s confusion before they struggle with a question.

“What’s multiple skirsis?”

Rendered speechless by the child’s curiosity, Rogue will need a moment before her next heartbeat and gasp of air. A blink will be needed to ward off that single tear forming in her eye. Back behind the cobwebs of near-forgotten memories, she will dig up the day I first predicted her peering into that child’s eyes and thinking That’s what a world free of MS looks like. Damn!

I will do anything in my power for my daughter if those efforts contribute to a positive, nurturing world for her. She has already earned her moment, yet will continue to pay installments of sacrifice and sorrow. After dumping words from my brain, I don’t know what direction my stories will take or their final message. “This is why we need to do more” is the theme I aim to project. Beyond that simple tenet, I can’t promise any discernible pattern this year.

I despise everything I will do over the next few months. When you read descriptions of my deteriorating physical condition, please understand my anger. Multiple sclerosis is forcing me to describe every painful slice it has carved from my body, pulling the imagery from me even as it continues the devastation. A constant revisit to my darkest moments is the price I must pay to give Rogue that flash of enlightenment one day, far in the future.

This is why we need to do more.

I don’t want your sympathy.

I do need your support.

Please visit https://NeverStopNeverQuit.com/donate/ and make a contribution today. One hundred percent of the money you give will go to the National MS Society in support of our bike MS 2024 campaign.

This is why I fight.

Just like that, I’m not done anymore.

Fuck.