2018/46

One advantage of being a late-December baby (28th) is the chance to align my life with the calendar. 2018, my 47th trip around the sun, was: 
  - an optimist’s dream 
  - a pessimist’s nightmare
  - an introvert’s haven 
  - an extrovert’s opportunity

For this optimistic/pessimistic outgoing introvert (look it up-it’s a term), the year will never be matched. I lived a thousand chapters in 2018. In all the pages, one theme echoed over and over-Never Stop… Never Quit…

I won’t talk about the suffering my MS brought onto me, or the woes I bore witness to, or even the burdens life brings. No, revisiting is too painful and pointless. My story is about what I gained in 2018 and how I’ll use it to my benefit in ’19 and beyond. When I stopped, when I quit, at the end of last year, I held close to me the only things I could handle: my health, my mind, and My Little Love. The rest, I left to you. 13 months later, this is my report.

Health

In 2018, I physically improved more than any other year in my fight. First of all, let that term sink in: I improved. None of my disabilities have diminished. My body is now better condition to endure, supplement, or compensate for the damage inflicted by my MS. I’m stronger; I’m lighter; I have more endurance to live. I spend 2-4 hours a day, 5-7 days a week, in rehab pushing my body beyond what it can do. I often push too far because I don’t know just what I’m capable of—I never want to do less than I could have. I wish there are words to describe the feeling when my body fails, when the pain and aches are excruciating, simply because I did too much that day. More so, when it was more than I could do the day before, my tears of pain turned to joy and excitement to go even further the next day.

Sure, there were a lot of setbacks, but “two days of pain for three days of gain” is a beautiful motto when the ratio has been flipped for so many years! For the first time in a while, I can see the next level of improvements to work for as I plot my 2019 breakthrough!

Mind

In 2018, I found clarity and comfort with my personal set of challenges and setbacks. Salvation came from hundreds of sources, both traditional and quite unique. My history of depression and anxiety predates my MS. Their collective force is what I like to refer to now as “a worthy adversary!”

Counselors, loving family, and amazing friends helped me navigate my new environment. I’m proud to say that I proved many people right! The focus on what I can, or need to, handle is narrow; no longer pinging all over the place, my life is stronger—my impact is more ‘effective.’

My mind transformed thoughts of what I call “the chaotic, the horrific, and the truly burdensome” into The Ramblings of a Condemned Man. The collection of stories reflects the directions my mind wanders constantly. The book’s novella …in abeyance was released separately as Book #1 in The Condemned Man Series. Book #2, Annie Flynn - First Row, Second Desk, released in December. What a great way to rebuild my mind and my heart!

 

My Little Love

Eleanor, when you read these pages years from now, please know when 2018 began, you were the only person I wanted to see and hold every day. You are the only reason I vowed to continue my fight. That is no longer the case, for I rediscovered the love I have and want to share with so many. I rediscovered the magic of love for family, and friends, and those who find a special place in my heart. For that, I thank you.

I love you,

Daddy

The Rest, Left up to You

The numbers tell one story. Kim Madden and Chris Madden led Team Amulet, as they raised over $53,000 in support of our fight. Michelle Judd and Tom Dickey collected 76 phenomenal bottles of wine from an incredible collection of local wineries and private donors, helping the MS Gala raise a total of over $267,000.

My heart tells the other story. Every bit of outreach you provided helped get me through 2018. Every success we realize and celebrate in 2019 is due to your efforts. Your notes, texts, and calls of support lifted me. Your donated dollars and purchased books motivated me. You supported me every step of the way, never allow me to fully slip into the background, and carried me (figuratively and literally) through my toughest trials. I will never be able to repay your love, but I will never stop paying it forward.

2018 Was Great. Now What?

My narrowed focus, now a bit wider, is poised for success.

My health: I won’t be greedy. I’ll readily accept “two days of pain for three days of gain” all day, every day. I will push, adapt, and overcome. I promise to document my trials and success, a living record of what your support has done!

My mind: I will fully embrace the opportunity you gave me, professing and celebrating the very first minute of the very first hour of the new year. My writing will continue to expand. Moments, a saga, will release as Book #3 in The Condemned Man Series. I’m writing more short stories and began work on my next novel.

My Little Love: every day, we will celebrate life!

My Fight: as a board member of the Oregon Chapter of the National MS Society, I’m asked to give a projection for the monetary impact of my efforts. For both bike MS and MS Gala, I’ve provided a preliminary forecast for 2019 of $100,000. That’s not $100,000 of work I alone must do, for you have already shown the value your love and support carry. I just want to do my part and contribute alongside the greatest army of friends and family I could ever imagine.

Thank you for giving me an opportunity to return to the fight.

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 ride!

Please donate today: http://main.nationalmssociety.org/goto/eleanor

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

www.neverstopneverquit.com

www.neverstopneverquit.blogspot.com

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.

1999

August 4, 2018

A day I never expected to face — I had no idea how I would prevail until I realized I was there before…

The ride for 2018 Bike MS finally arrived. For the last 14 years, the day sent a surge of adrenaline through my body. The anticipation, the buildup and outreach, the fundraising, all prepared me for this capstone event. I was always eager to fulfill some of my lofty goals set during the months prior; I was always planning on smashing every milestone reached the year before. Nothing prepare me for the gaping hole I would feel on August 4. The scars of my struggles over the last year were still fresh, my significant physical and emotional damage had shut me down throughout the winter months. Praising the fact that I bore and persisted, I celebrated my recovery this spring — boasting my return to everything “normal” in my life. Truthfully, I am improving but there is so, so much more I need to work on before I’m back to where I was/where I need to be. Nothing in particular blew holes in my plan, just the actual proverbial (and literal) rubber finally meeting the road!

My mind struggled with doubt as my body executed a well-polished routine in the morning. Getting dressed, gathering and checking over all my gear, prepping my trike. Even the tasks I had forgotten about (like my much-needed ankle brace) were completed naturally, as if nothing had ever changed. My fears over what my body was capable of continued to persist, however. All of my friends were supportive, excited to see that I made it to this year’s event. One question was a common theme: “How far are you going to ride this year?” That was fair, as my recent bike MS history continued to dwindle: 102, 64 33, 32, 19, 32 miles.

Every time the question came up, I simply responded: “Somewhere between 10 feet and 32 miles.” I am a pro and masking my fear and apprehension with humor…

Procrastination and delays exhausted, the time finally arrived. I removed my full leg brace, strapped on my ankle brace, and slipped into my bike shoes. The increased difficulty standing up with my clip shoes only exacerbated my anxiety as I less-than-gracefully eased down into my recumbent. As I sat, in the moment my eyes blinked closed and reopened, every recollection, every vision, every sound, and every emotion flooded my mind again.

It was July 7, 1999.

Twenty-six months after a car accident and subsequent severe closed head injury grounded me from flying, I finally slipped into the cockpit of an AH-64 Apache helicopter once again! As I connected the two dates, everything suddenly made sense. The preflight jitters — stepping into my flight suit, mission planning, preflight inspection of my equipment and aircraft. I executed every task Saturday morning with the same muscle memory, and the same apprehension, as I did back in 1999.

I grabbed the steering bar on my trike the same way I grasped the cyclic. My face made no attempt to conceal its smile as I gently ran my right thumb over the controls. “Hello again, my friend!” My bike shoes clipped into the pedals as I reached over to store my gear in the saddlebag; my boots rested on the pedals as I reached over to store my gear in the cockpit’s side-pocket. With my helmet strap snapped, my bike and aircraft were both ready to get underway. As I stepped through the final tasks, neither process was interrupted by giddy elation or nervous anticipation. The only momentary distraction was the joy I felt this weekend as I reused the same line 19 years later. “It’s just like riding a bike, Kevin.”

As I pulled out of my tent area and headed over to the start line, the world once again felt normal. Without hesitation or fanfare, I hit the start line and smoothly launched down the course. In Korea, the only additional step was my copilot, my instructor pilot, and his startled reaction. As the Apache gently lifted off the runway and rolled into a climbing left turn, I commented on how I wasn’t sure it would go that well considering I had not flown for 2-plus years.

Everything indeed went well once again, just as it had so many times before. My anticipation in the days and weeks preceding, though proven unnecessary at the time, was essential in preparing my body and my mind — on both occasions. Neither ride will be recorded as anything other than another short, uneventful, flawless event. In my mind, however, the thoughts of triumph over crippling setbacks paint two of the images I hold close. The peaceful satisfaction, the same in both rides, is something I don’t know if I’ll ever be able to fully describe; I only hope you have such a moment to hold close.

This will not last.

I crossed the finish line on Saturday and took a moment to celebrate my glory, but I knew moment was drawing to an end. Soon, I would struggle to rise from my trike. Pain, weakness, discomfort, and setbacks – those are but a few of the words ready to reintroduce themselves. None of that mattered to me. For 19 miles, everything was as the way it should be. There was no doubt, only comfort and confidence.

For 19 miles it was 1.9 hours on July 7, 1999 — 39 days before my hands went numb — 90 days before I was tentatively diagnosed with multiple sclerosis.

August 8, 2018

Bike MS continues to hold a special meaning in my fight against MS. It is the method I choose to show thanks to the national MS society, my friends, and my supporters; it is my method of raising funds and awareness for the struggles so many of us face – and will continue to do so. Personally, it has been a method of consistently measuring the loss which compounds year-over-year. 2018 bike MS, for the first time in a while, as highlighted targets for me to set my sights on as I push to strengthen and improve. My body has been beaten and bloodied for years, endured a 300-plus days siege, and launched a counterattack!

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 ride!

Please donate today: http://main.nationalmssociety.org/goto/embk

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

www.neverstopneverquit.com

www.neverstopneverquit.blogspot.com

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.

For any of our supporters who donate $300 or more, I will send you signed copies of both The Ramblings of a Condemned Man and My MS and E. A personal thank you for your tax-deductible contribution. For more information about both books, please visit www.NeverStopNeverQuit.com/books.

Bear and Persist

“Perfer et obdura! dolor hic tibi proderit olim.” (Ovid, Amores. 3.11a. 7-8)

“Bear and persist! The suffering will be useful to you.”

I never thought of my fight with multiple sclerosis as suffering. Instead, I preferred sexier terms like a struggle, challenge, or simply my fight. Suffering, in my mind, raised connotations of a one-sided contest where I am a never-ending victim of aggression. After 19 years I guess I have to say stereotype is true, for the most part.

My journey has been highlighted with countless hospitalizations, medications, and setbacks; because of my MS, I medically retired from two careers; the physical, mental, and emotional strain continues to take its toll on my family, my friends, and myself. There is no set path for tomorrow — my MS progression often fails to follow any best-laid plan or expected roadmap. Complete lack of control over so many factors, factors which are both painful and debilitating, is pretty much the textbook definition of suffering.

My goal for 2018 has been to make MS useful to me.

·                     No, this isn’t some ass-backward way of trying to glamorize my fight (“It’s amazing how strong he is! I’m so proud of him.”)

·                     I’m not making lemonade out of lemons. I don’t even own a lemon-squeezer thingy.

My life has changed, is changing, and will continue to do so because of my MS. That’s a good thing. Because of my MS, I have taken on challenges far outside the realm of considerations I once held close.

Last month, because of my MS, I introduced readers to, what I call, images of “the chaotic, the horrific, and the burdensome.” Stories from The Ramblings of a Condemned Man are some of the emotions and thoughts I can express only through writing. My MS has been the catalyst for publishing them through NEVER STOP NEVER QUIT — 100% of the profits received will go directly towards our fight. Personally, I find it therapeutic to introduce the world to Chris Baxter, Spencer Tucker, Zodi Dayak, Jimmy the Kid, Sarah Pak, Colleen Fellow, Samantha Eppling, and so many other named and unnamed characters. They are friends and adversaries I’ve selfishly held close to me for some time; it’s been a while.

By the end of this year, I will share an even greater undertaking. Dominic and Sharon Bandall, Angela Grant, and Lizzy Strauss are but a few of the characters in the saga Moments. Because of my MS, they were first created — it is because of my MS that I will share them with my readers.

Because of my MS, I will spend the time between these releases fundraising as part of Team Amulet. Before the day I was told, “You have MS,” I don’t believe I ever heard the term before. If I had, it made no impact on me whatsoever.

Because of my MS, I reached out to the National MS Society for their guidance and support in those dark early days. When I was finally strong enough, I joined my new family and road my first bike MS.

Because of my MS, my brother Tommy and I formed Team Amulet in 2003. Since that time, I have ridden with more than 70 Amulet-eers, in five states, raising over $550,000. I wonder what the next 15 years will bring…

Because of my MS, I have had the opportunity to meet so many new connections. In spite of my MS, those connections grew to become cherished friends, loved ones, and supporters in (and separate from) our collective fight. It is a fight we will someday win. If my efforts contribute to that celebrated victory, I will be happy to say, “We found a cure because of my MS!”

Until that day comes, I will bear and persist while I bask in the benefits of my suffering.
Please donate today: http://main.nationalmssociety.org/goto/embk

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…®

Kevin Byrne

Portland, OR

www.neverstopneverquit.com

www.neverstopneverquit.blogspot.com

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.

…in abeyance: a novella from The Ramblings of a Condemned Man

…in abeyance
A novella from The Ramblings of a Condemned Man

Available now at Amazon.com (Print, Kindle)

On Friday, March 28, 2014, a John Doe died in the emergency room of Saint Augustus’s hospital, Portland, OR. He is on record as the last man to die in Portland. Some rudimentary outreach seemed to show him as the last person to die anywhere.

Nothing else changes; no mystical stories or tales of fantasy. What would you do if humanity stopped dying? …in abeyance is thrilling a tale of the praise, fear, and the agony that comes when death does not make its wonted arrival.

Christopher Baxter is a man recognized for his accomplishments: West Point graduate, medical doctor, combat veteran. Chris is also a man who struggles with the familiarity of circumstances he has carried his entire life. After a career in the Army (“Nine regions and about thirteen years clandestine total. How does the saying go? ‘Win some, lose some’?”), Chris returned to his childhood home to serve this community as a doctor at Saint Augustus (“to continue my service where my father’s ended”).

As the world struggles to come to grips with dormancy, is this one man just another unwilling participant, the curse, or their salvation?

Colonel Scott Gipson is a senior operative with the Special Activities Division of the United States Central Intelligence Agency. Working in covert operations for most of his twenty-three-year career with the US Army, Colonel Gipson did not deploy to combat zones. Instead, he and his team went to places where war was brewing.

Will Scott’s unique insight into the turmoil Chris has faced be enough to save his reputation, his soul, and the mark he will leave on our world.

The Glorious Tale of Zodi Dayak and the Children of Mali

For Zodi Dayak, he is prepared to embrace a life well spent. With his village and children safe, there’s nothing more to do but die—in a world where death no longer exists.

Captain Benji Torim has only one concern for his Marines in Helmand Province, Afghanistan. “…if bullets ever do start flying again, we’re all going to die in this fucking sand.”

Pak Ji-Hyun’s 18^th birthday was shared by the two people closest to her. Bung-ju sat and prayed that his cousin would take the time she needed to get better. Kyle sat and prayed for Sarah to take the time she needed to die peacefully.

Colleen Fellow from the Portland Times was searching for a story so good it would write itself. The link she found damned Chris Baxter and Friday, March 28th forever…


As the world is held in abeyance, a most peculiar connection is made.

“…fantastic stories, where I’m limited only by my imagination, not by the confines of this stupid disease.”

NMSS Leadership Conference

Denver, CO

November 2016

Never Stop… Never Quit…^®

For more information, please go to: neverstopneverquit.com

To donate to our efforts through Bike MS, please go to: main.nationalmssociety.org/goto/embk

Chaos: a selection from The Ramblings of a Condemned Man

Available now at Amazon.com (Print, Kindle)

I wrote this piece as a preface to try to explain my logic behind the ramblings I have included in this book. Chaos is not a perfect word choice, but it is the best explanation I can supply when I address the inevitable question, “What were you thinking?”

My life is and always has been rife with chaos. Some of the turmoil has been inflicted on me; I am merely a victim. Other times, I’ve been guilty of instigating disarray. There were joint efforts as well, both inflicted and self-instigated. And, of course, chaos is often a simple fact of nature. As to the correct proportions of responsibility, I don’t know, although prudence would split most of the blame between nature and me.

I don’t believe my body experiences a greater share of discord as compared to others. My mind, however, finds it challenging to see beyond chaos, many times to the detriment of the peace and beauty around me. Looking back on my life, the images that most readily come to mind are indeed the chaotic, the horrific, and the burdensome. Many great recollections are there, they just play second fiddle to my demons.

In and of itself, confronting chaos isn’t bad. You can realize a tremendous amount of satisfaction by solving impossible challenges, overcoming overwhelming odds, or righting the wrongs around you; it is the calling of every superhero. But, when or where does it end? At what point will our hero look beyond today’s villain, stop reminiscing over yesterday’s evil, and forgo anticipation of tomorrow’s plight?

It must be nice, taking off the cape to enjoy the day’s treasures. Unfortunately, this freedom is not afforded to condemned men; my sentence is the recurring vision of chaos. The reality of my multiple sclerosis (MS) further antagonizes the turmoil that is already deep inside me. I watch the incessant thrashing my body has undertaken since 1999, when I was first diagnosed. “What’s next?” rattles through my mind with its own dedicated line to every emotion and fear I possess. I am indeed a condemned man, but not for the reasons you might assume. The chaos of my MS falls mostly into the last category: it’s a simple fact of nature. I’m not a victim of my disease; it’s just another obstacle in life. One powerful difference with the chaos of MS is the answer to my question, “When does it end?”

It doesn’t.

Writing has become my way of loosening the shackles that barrages of chaos, both MS-related and simple facts-of-life, inflict on my mind and body every day. I first started writing stories meant only for my daughter, for her to read when she ultimately receives my journals, when they become hers. In these journals (okay, fine…it’s a diary), I share my thoughts, hopes, and dreams about life so that someday Ellie will have a vivid picture of the man her daddy was.

In late 2010, writing became my response to the increasing levels of chaos caused by my MS. The blogs I write are my attempt to express the hope that someday there will be an answer to “When does it end?” One piece in this book is appropriately titled The Completely Inconsequential Ramblings of a Condemned Man. It is adapted from a series of blog posts I wrote in 2017, documenting the damage MS has done and will continue to inflict on me. By confronting the chaos, bearing everything to my readers through the blog, I have been able to raise funds and awareness in our fight against the devastating effects of multiple sclerosis.

More importantly, the more I wrote about the chaos of my MS and shared it with others, the more my own fears lessened. The main subject of the blog series—this Kevin Byrne— now carries the weight, not the author.

If writing helped me cope with my MS, why not try writing about other aspects of my life?

In 2014, I wrote the novella …in abeyance. The main character, Chris Baxter, is the personification of chaos I have carried for far too long. Chris is who I am, was, wanted to be, feared, struggled to overcome, and so much more, wrapped up and scripted into an entirely fictional persona who lives in a fictional world (with a heavy smattering of historical context in this alternate reality). Placing turmoil on the shoulders of this character relaxed the burden on my own.

My revelation was earth-shattering! I wrote stories overflowing with the anxiety of my own unrest. Sometimes an entire saga addressed just one particular struggle I faced. My favorites are those based on the utter confusion in my head that I just can’t quite accurately describe; the alternate fantasy world became a surrogate for the chaos I was unable to express otherwise.

Regardless of why I wrote these stories, sharing my chaos this way has helped me sleep a bit better. Maybe it discounts my fears. Maybe it validates them. However, it is my hope that the therapeutic value I get from writing pales in comparison to the enjoyment you will get from reading my tales. Time will tell.

After my most recent struggles with MS and personal chaos, a harsh campaign lasting nearly two years, I gathered some of my favorite stories and sent them to my editor. They are some of the words I wrote or revisited to help battle my own chaos. In addition to Chaos, …in abeyance, and The Completely Inconsequential Ramblings of a Condemned Man, I have included four short stories. My writings are indeed ramblings because I sometimes feel as if I have little control over what happens in the story.

I am merely a conduit.

Kevin

May 2018

About the Book: The Ramblings of a Condemned Man

Kevin Byrne shares unique insight into the world of a man condemned by both his body and mind. In these stories, on loan from his personal collection, chaos becomes a burden that is no longer his—weighted instead onto the characters he has created.

Included in this book:

…in abeyance (a novella)

Christopher Baxter is a man recognized for his accomplishments: West Point graduate, medical doctor, combat veteran. Chris is also a man who struggles with the familiarity of circumstances he has carried his entire life.

Nothing else changes; no mystical stories or tales of fantasy. What would you do if humanity stopped dying? As the world struggles to come to grips with dormancy, is one man–Chris Baxter–just another unwilling participant, the curse, or their salvation?

Five short stories

  Chaos: a reflection, confession

  Essence: a perspective on the divine

  I’ll Never Breathe Again: a contemplation of past fears

  Jimmy the Kid: a dark tale of rage (nature)

  His Story, His Way: a dark tale of rage (nurture)

The Completely Inconsequential Ramblings of a Condemned Man

Inspired by a blog series first published in 2017, the never-ending struggle with multiple sclerosis is described through the symptoms they inflict on Kevin and his family, friends, and supporters in this ultimate fight.

Published by the NEVER STOP NEVER QUIT charitable foundation, 100% of the revenue earned from each sale will go directly to the fight against multiple sclerosis.

About the Author

Kevin was born and raised in New York City. A 1993 graduate of the United States Military Academy at West Point, he was diagnosed with multiple sclerosis (MS) in 1999, while serving overseas in command of a US Army Air Cavalry Troop. He is now medically retired and lives in Portland, Oregon with his daughter, Eleanor.

Kevin devotes much of his time and energy towards overcoming the challenges of his own MS, so he can fight for others. He began writing and blogging in 2010, for the Department of Veterans Affairs, the National MS Society, and then NEVER STOP NEVER QUIT, a charitable foundation he co-formed to further expand his fundraising and advocacy in the fight against MS.

“…fantastic stories, where I’m limited only by my imagination, not by the confines of this stupid disease.”

NMSS Leadership Conference
Denver, CO

November 2016

Never Stop… Never Quit…^®

For more information, please go to: neverstopneverquit.com

To donate to our efforts through Bike MS, please go to: main.nationalmssociety.org/goto/embk