Wednesday, August 8, 2018

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!
Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

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.


Thursday, July 5, 2018

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

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


Tuesday, June 12, 2018

…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 18th 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


Thursday, June 7, 2018

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

Tuesday, November 28, 2017

How My Fight Against MS Broke (and what happened next)


For 15 years, I have reached out to friends, family, and colleagues with one message: the fight is not over and it won’t be over until a cure is found.
My delivery of that message has morphed over time.
In 2003, I was strong and felt the need, “to show thanks for those who helped me along the way, to fight for those who can’t, and to ensure our next generation will never hear the words, ‘You have MS.’”
Slowly, my theme changed.
2005
“Brie and I deal with the effects of MS every day.  Fortunately for me, the continuous treatments/aid/support that I have received since my diagnosis in 1999 have made the difference.  It is a fight.  The fight, however, is not over.  For me and for the 1,250 persons with MS living in Delaware it won’t be over until the cure is found.”
2007
“My medical condition stabilized (to a point).  Though still somewhat debilitating, I am able to function day to day.  I am under constant treatment through the Veteran’s Administration healthcare system.  Through their treatment and support, I am ‘healthy’ today.  Physically, I am as stable as I can hope to be until we find a cure.”
My words documented a declining, but hopeful, fight as my MS progressed.
2011
“It has been 11 years now since I first heard those words, ‘You have MS.’ Like many others, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease.   I am able to fight back, though!  Through the amazing medical treatment that I receive from my doctors at the Veterans Affairs Hospital, my body is strong.  Through the constant love and guidance from my friends and family, I have been able to maintain my daily life.  All the time, the support from advocacy groups like the NMSS have kept me prepared for today, and whatever may happen next!”
2015
“My arms and hands are failing; my voice is weak; my days upright and mobile are fading.  My fight, however, remains strong.  A World Free of MS is still the vision.  The new cases of multiple sclerosis diagnosed daily remind us, we don’t yet have a cure.  The rapid worsening of my own disability is a reminder of the paramount challenges for all affected by MS.
“We will win this fight.  My goals still remain set on the recovery and rehab I’ll need to dance with my daughter, Eleanor, again.  If I don’t reach that target, I’ll continue fighting to ensure her generation never must hear the words, ‘YOU HAVE MS.’”

Each year, my tale of adversity and resilience had a strikingly haunting tone, one of familiarity. My progression, while unfortunate, is all too common in our MS community. I didn’t want to believe my course; sure I would be the exception that proves we are on the verge of defeating multiple sclerosis.
As summer wore on, and heat became a critical factor, the treasured motivational burst I normally experience before/during/right after Bike MS sputtered and stalled. Shortly after the ride, my condition worsened again. My leg weakened and my arm lost more function.
I grew restless from the seemingly futile efforts of generating motivation and fundraising for, what I began to see, a fictional future. Anxiety and depression kicked in without my realization, something I simply passed off as a byproduct of a highly stressful period in my life.
But, hey, that’s my specialty, right? I take pride in my ability to excel amidst such adversity.
This was too much. This has been going on for too long.
I Stopped
I stopped reaching out to fundraise, no longer focused on my fight to defeat MS. Instead, my energy switched towards higher priorities, repairing my personal life and focusing on my writing outside of the MS world. Unfortunately, I didn’t make any headway in either those areas. I wasn’t going anywhere; my fruitless efforts merely occupied time until a day would end. I started again when I woke the next day, right where I left off, still in limbo.
My depressed state may have snuck up on me, but it did not go by unnoticed. Documenting my dilemma in the Inconsequential Ramblings of a Condemned Man blog series was my attempt at a therapeutic confrontation of my fears. Coming face-to-face with, let’s call it what it is, this huge mountain of shit didn’t have the effect I had hoped for. I faced the complexities of my disease and finally realized they are not going away anytime soon.
I Quit
I didn’t have much of a reaction as my world slowly crumbled down around me. I didn’t hit the bottle; my drinking actually dropped significantly. I didn’t go out and further self-destruct my life. Instead, I didn’t do much of anything except hope for this to get better somehow. I was idly waiting for my Deus Ex Machina.** My anxieties and fears only heightened when I accepted the fact there is no salvation primed and ready to go. There are no more treatment options. A cure or effective treatment for me, if one exists yet, is still in the pipeline of research, discovery, development, manufacturing, or testing. My body and my mind must bear the burden of hanging on until our day comes.
This is where I spent the last several months, in a perpetual cycle of increasing debilitation, anxiety, and depression. My symptoms are worsening. It’s difficult to tell if my slide is medically induced or fed by my depression. It’s probably some combination of the two, but there’s no way to know for sure. Neither factor is going away anytime soon.

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!

As I watched this year’s fundraising season move towards a close, I sat by in amazement as the unthinkable played out over and over.
·         I stopped reaching out and fundraising, yet our friends and loved ones continued to provide incredible support. Over $60,500 came in. Together, we propelled Eleanor to the #1 fundraiser rank for 2017!
·         I stopped recruiting riders and building support for Team Amulet, yet another incredible array of friends, both old and new, rallied to ride and celebrate. Together, we raised over $84,700 as Team Amulet in 2017! Since our inception in 2003, Team Amulet has now reached an incredible milestone of over $633,000 raised!
Though I felt strangely alone, my friends, family, and loved ones rallied around our fight. Many found inspiration in my words. Eleanor and I were honored to speak and celebrate with the National MS Society – Kentucky/SE Indiana Chapter. We appeared in promotional videos for both the Oregon chapter as well as a national marketing campaign. Countless times over, I was praised for my great work and dedication. As my world continued to darken around me, I finally began to see the light so many others are generating in support of our fight.
I received a shocking reminder of something I had lost sight of long ago. The fight is not over and it won’t be over until a cure is found.
It will never stop. My body and mind will stumble. Times may come when I will break, hopefully to pick up and start again soon, but the collective WE will never stop.
It will never quit. While I face this gut-wrenching struggle to keep fighting and not give up, the collective WE will never quit. I am not alone in this fight.
I can’t even begin to express my love to all who helped carry me, even before I realized I was in need.
So now what?
That, my friends, is a question for which I would love to discover the answer! I don’t know. Even as I write this note, I’m trying to formulate an answer in my head.
My first step is to address some of the clutter clouding my mind and feeding my fears. Personal issues (divorce, moving, finances, etc.) do nothing but pound on a weakened body. Most issues are close to final resolution, for the time being. Maybe then I can assess what is real and what is my mind creating.
My next goal is to accept the fact I am a disabled man. Simply fighting to discount my adversities is pointless, they are here for the long haul and will probably worsen.
If you haven’t seen me in a year, my disability is far greater now.
If you haven’t seen me in a month, my disability is worse now.
You haven’t seen me in a week…
I need to learn how all of this affects my life from this day forward. There are no options when your body fails and functions are lost, you simply must learn a new way to live. That’s what I must do. My first blog is year was 45 Is the New 0. I didn’t realize how much worse everything would progress in such a short time, but I guess my commitment still stands true.
It starts today
Focus switches back to three priorities: my health, my mind, and My Little Love. Eliminating distractions, I’ll direct focus on my physical progression.
My attention will be both towards the rehabilitative and medical efforts I need to recommit as well as the logistical preparations for when my condition progresses beyond self-management.
Reducing the anxieties caught in my mind will surely be a welcomed remediation. I’ll take a break from outside distractions and focus on serenity. I’m looking forward to posting this blog, then immediately stepping away from my all-too-consuming social media distractions. I’ll get back to my writing, fantastic stories which have nothing to do with multiple sclerosis.
Finally, I’ll relish in renewed magic with My Little Love. Eleanor is finally at the age where the memories we make last a lifetime. If my body only has a short window of opportunity, those memories will be fantastic.

I don’t know how long my “sabbatical” will last, or what condition my body will be in when it ends. The fight against MS is surely not over, nor is my personal battle. Your continued support is definitely needed and immensely valued.
Most of you who know me already realize I don’t reach out very much, if at all. Writing is great because I get to share all my fears, concerns, joys, and imagination without having to open myself up at all (yes, I get the lunacy of my logic). I sincerely look forward to describing what this journey looks like when completed, and I prepare for the next adventure.
Until that day comes, please receive my sincere thanks for all the support you continue to give all of us fighting MS. We need every bit of it, and I apologize for not saying thank you enough.
Love,
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…®
Kevin Byrne
Portland, OR


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


** Deus Ex Machina: The term has evolved to mean a plot device whereby a seemingly unsolvable problem is suddenly and abruptly resolved by the inspired and unexpected intervention of some new event, character, ability or object. Its function can be to resolve an otherwise irresolvable plot situation, to surprise the audience, to bring the tale to a happy ending, or act as a comedic device.


Tuesday, August 8, 2017

2017 Bike MS After Action Report (AAR)

More pictures to follow!
I share this report with you with the understanding that the only chance I have for a healthy future will come from new research and development. Please donate today to support our fight and share this message with as many others as you can.

As we rolled into 2017 Bike MS, much of my hopes and prayers rested upon the adrenaline boost I’ve come to cherish and depend on. My friend didn’t let me down! I’m grateful and proud to report my 15th annual NMSS event was a smashing success.
We arrived in Monmouth, Oregon facing 97° temperatures under a blazing clear sky. Team tent set up was quicker than normal, basically because I slacked on my team captain duties and did the bare bones minimum. My body held out for a few hours, thanks to that adrenaline and the opportunity to reacquaint with so many incredible friends. Fortunately, Eleanor was there to be my excuse for heading back to the room early and calling it a night. I knew Saturday was going to be a trying day; I still had no idea what my body would be capable of when the time to ride finally arrived…
My self-pity clouds started to amass early, as I realized how much longer everything took: 20 minutes to dress, 15 minutes to walk and reach our team tent area, 20 minutes to put my bike gloves on. Fortunately, I had help pumping my tires and ratcheting down my bike shoes (a humbling experience to have others care for your basic needs). I lumbered into my recumbent trike; suddenly I was transported back to the summer of 1999. After being grounded for 2 ½ years (the car accident which probably triggered my MS) I finally crawled back into the cockpit of the Apache helicopter. Like then, everything suddenly felt right and comfortable. A smile came over my face as I proudly boasted, “You got this!” Much like the day before, I just didn’t know how long my burst would last.
There were a variety of routes this year, ranging from 19 through 105 miles. I conceded the short route would be in my best interest, hoping to make at least that far. So, I headed out once again, alone with my thoughts and my music to keep me company. The route split off quickly, with a right turn for the 19-mile course and everything else to the left. It turned to the right and rode.
About a quarter-mile into the new course I cursed myself and turned the bike around. The only thought going through my head was, “If you finish 19 and make it back comfortably, you will be pissed at yourself for leaving it on the table.” I turned around and backtracked to the direction of everything else. The next split was easy. 32/45 one way, the remainder of everything else went the other. I knew my body wasn’t going past 45 miles. I still wasn’t sure my body would make 32… or 19… or less. I made the 32, and I’m proud to say I left absolutely nothing on the table!
It was an interesting little science experiment to watch my body struggle through 32 miles in the Willamette Valley. My left side bears the brunt of this disability. My hand wrapped around the steering post as it quickly cramped up. Breaking was not an option on the left side, shifting gears difficult and cumbersome. I relied on my right for all the steering, breaking, and shifting.
My left leg can’t push or pull the pedal. It’s basically just clipped in, with my ankle braced tight, its sole purpose seems to be adding difficulty and resistance to my right leg. My right carried the load and brought me back safe. I wasn’t worried about the strength of my right leg, it was the incessant pounding and cramping on the left which worried me. Nevertheless, the conditioning of my strong limbs and my stubborn motivation carried me across the finish line.
What a wonderful sight it was to see Eleanor jumping and yelling as she cheered me across, then running to me for a well-deserved victory hug! I was tired and sore, confident I pushed much harder than I should have. There was no other option.
Brie was ready to support. After 3 ½ hours of sitting in my trike and riding, my legs and arms were useless. She unclipped my feet from
the pedals, removed my shoes and ankle brace, and popped on my walking brace. It took Brie plus two other people to help me stand up and hold on while my wobbly legs tried to gain stability. I’ve given up a modesty in humbling situations such as this. There’s no way I can do it alone.
The rest and recovery time was longer than before. My body is suffering from not only the weakness of my failed limbs put the atrophy their immobility leads to. My adrenaline kicked in again and again, mustering up enough to celebrate with my team on Saturday night and to bike the next morning in the ‘I Ride with MS’ victory lap with all my friends fighting along my side. Overall, the weekend was less than I wanted to do yet more than I initially feared I would be able to accomplish.
Even more than crawling into the cockpit of my recumbent trike, the weekend held so much magic and promise. So many friends and loved ones of there to support and fight alongside me. Many are fighting their own MS battle; it’s wonderful to catch up with my brothers and sisters. We compared war stories of our setbacks since last year’s Bike MS; we marveled at the new technology and widgets we had to increase our mobility; we shared stories of new medications and new hopes. The most poignant part of our time was a chance to see how their fight with MS is going. I’m happy to say the progress for so many was positive. We love to share in their success, always happy to talk about how they were much worse in the past, restricted to a wheelchair, and now there gingerly walking around. We even sometimes reminisce about the good ‘ol days, how I rode the 100-mile century option just a few years ago, yet struggle today with my limited potential. We talk about the future (talk about the future a lot). Rarely do we talk about the future where our MS continue to overtake the mobility and functions we cherish. No, all I hear is talk about how we will overcome.
I awoke Monday morning with the grand plan of writing this quick AAR to share with my supporters and begin the next round of recruiting more donors. Although the alarm went off at 5:30, my day was not ready to start. I couldn’t get out of bed, unable to move my left side at all. A weekend of riding and exerting left me with an agonizingly sore, cramped leg. My left hand remained tightly cramped into a ball. My day would not start for a while; instead I laid in bed with a smile on my face.
“You did way too much. It’s going to take some time to recover. This weekend was more than your body could take. Good job, KB! Good job.”
It’s coming back… slowly.
Maybe next year all I will be able to do is half, for a quarter, or a tenth of what I did this year. If it is, I will do that plus a little bit more. I will leave anything on the table. This fight is too important.

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


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



Thursday, August 3, 2017

Fear

2017’s Bike MS is just around the corner. On Friday, we gather down in Monmouth to begin the festivities: reacquainting with old friends & meeting new ones, riding the countryside on Saturday and Sunday, and celebrating our mutual commitment to defeat multiple sclerosis.

This year marks the 15th anniversary riding with the National MS Society. For the first time, I go into the weekend afraid. My body is failing at a rate I find difficult to track.

The Congressionally Directed Medical Research Programs (CDMRP) strive to transform healthcare for Military Service Members and the American public through innovative and impactful research. In support of MS, their vision is “to prevent, cure, reverse, or slow the progression, and lessen the personal and societal impact of multiple sclerosis.” I recently had the pleasure of reaching out to our members of Congress in support of continuing MS research under the CDMRP. This is a cause I wholly support, but what can I do when every aspect of their vision is currently beyond my reach?

Prevent
Cure
Reverse
Slow the progression
Lessen the personal impact
Lessen the societal impact

Fight.
The simple answer is to fight with everything I have, to never stop, and to never quit. I have no other option.
There is no way to lessen or overcome my fear. My limbs won’t work well, or at all, nor can I will them to do so. Fatigue will set in the moment I wake. My eyes will fail, my voice will grow weak. When I strap into my trike, I have no idea how far my legs will push me, if they work at all. I look at the temperature forecast and wonder how much 100+ degree weather will compound my weakened condition. Above all, as I struggle to set aside these doubts and forge ahead, I wonder if this will be the last year my body will have the energy to even begin such an undertaking.

Fears will press hard on my emotions, every minute of every moment. Instead, I need to give myself a reason to fight.

[Inside Voice]:
“Don’t fight to overcome your fear, for your fear will not subside. Never.”
“Don’t fight to show your fear who is stronger. Fear is.”
“Don’t fight to lessen your fear, make it go away, or drown it out. Fear doesn’t care; fear is not fighting you; fear is merely present.”
“Just fight. Fear is there and it’s not going away. Focus on the fight and maybe, just maybe, you’ll win.”

I win my fight if I overcome that which feeds my fear, my MS.

Prevent, Cure, Reverse, Slow the progression are in the hands of science. I need to fight so I can continue to raise money and awareness in support of the research and development of new therapies to prevent, cure, and treat MS. This is why I ride!

Cure, Reverse, Slow the progression are also in my hands. I need to fight so my body has the strength, opportunities, and resources to attack the MS already inside me. My ongoing therapies need revamped support in the name of radical changes to diet and exercise. August 1 = Day 1. This is why I ride!

Lessen the personal and societal impact of multiple sclerosis. The emotional challenges of my MS cripple far worse than the physical. This is a manual focus, every single day. “Remember that, Kevin: this is a manual focus, every single day.” This is why I ride!

I don’t want my story to be left untold.
When we win this fight, I don’t want to say, “I wish I did more to end this sooner.”
If I lose my battle before we win this fight, I don’t want to say, “I wish I did more when I could.”
Instead, I want to say, “Remember when we… Wow, was I scared!”

I am left wondering how many others felt this way when they finally confronted the brutality of their own fight. How many who fell thought they would win? How many who won feared they might fall?
Please support my 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!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR