Monday, July 27, 2015

Bike MS 2015 – Wasting Time


               
I reconnected with an old friend of mine this weekend.  Though close when we were young, we last spoke many years.  Our relationship was relegated to the status of “Facebook friends,” those who connect through pictures of their kids and general updates on life. 

My pal reached out in the most spectacular way: through a donation to our Bike MS fight!  He found the link on my Facebook page and wanted to support.  There was only one question he had one question for me:  “Dude, why are you writing haikus?”

My answer was simple.  “To get responses like this,” I said.  Perfect.

I write stories to share my message, to share my fight, and to gain your support.  If it takes a haiku to get your attention, so be it; that’s what I’ll write.  This is my fight, as told in the form of traditional Japanese poetry.

The blazing sun thrills
yet My trike never quits me,
Donate to end pain

Never stop 'til cured,
beer and wine are the choices
Team soaking in pools

Chopsticks hold the prize;
my long love is found anew
As rain falls around

Never quit our fight;
A cure is the only end.
Dancing with my loves

money finds the chance
As daylight breaks through my spokes,
Our legs never tire

I lumber the climb
as new life joins our family
A new summer spring

Crest over the peak,
Before the summer sun swells;
I may ride sixty


What will it take to get your support?  Next up: my story in the voice of Dr. Seuss!

Whatever it takes…


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!

Kevin Byrne - Portland, OR


* Inspiration: Kid Rock, “Wasting Time”, Atlantic Records, 2000

Thursday, July 23, 2015

Bike MS 2015 - Fight Fire With Fire


               

My message is going out everywhere with just one intent. I want to gain all the support we can drum up for our Bike MS 2015 campaign.  Please click on the link above and support our fight against multiple sclerosis.

Fight: that is all I want to do.

My youth in the Bronx, my West Point days, then the Army REFINED the tools I would need to fight and strive for my goals. With my MS, and the start of my second life, I started to learn HOW to fight. Today, I am constantly reminded WHY my fight needs to go on.

My multiple sclerosis fight is now in its 16th year. At the end of 2015 I will mark a major milestone as I complete a two-year clinical trial. The goal of the trial is to find a treatment, if not the cure, for Secondary Progressive MS. I have spent nearly three years as part of this study, looking to stem the progression of this disease’s advanced stages. Fighting back is the only option. If this research doesn’t lead to a breakthrough, I will charge ahead in support of another chance.

The new cases of multiple sclerosis diagnosed daily remind me that 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. My arms and hands are failing; my voice is weak; my days upright and mobile are fading. My goals, however, remain strong. Words are my strength today, so that is how I fight. A World Free of MS is still the vision.

We will win this fight. My goals still remain set on the recovery and rehab I’ll need to dance with my little Eleanor again. If I don’t reach that target, I’ll continue fighting to ensure her generation never has to hear the words “YOU HAVE MS”.


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!

Kevin Byrne - Portland, OR

* Inspiration: Metallica, “Fight Fire With Fire”, Megaforce Records, 1984

Sunday, July 5, 2015

Bike MS 2015 - Die with Your Boots On


What are the stakes in this fight?  Take a moment, if you will, and just say two words: Multiple Sclerosis.  Say them, then pause to reflect on what those words mean. 

Multiple Sclerosis  

What thoughts come to you?  Descriptions like disabling, unpredictable and crippling often top the list for many, as do images of wheelchairs, walkers and crippled victims.  The devastation caused by MS is rarely thought of as fatal; people don’t die from MS.  In the past, my own thoughts often pulled the same visions.  I would try to picture what could happen to those afflicted with this disease if we didn’t find a cure for them.

The reality of the matter is quite different.  I am one of those afflicted with this disease; if we don’t do something about my MS I will probably die from it, 5-10 years earlier than my peers, after enduring those years of disabling, unpredictable and crippling effects that will drive my crippled body into wheelchairs and walkers.  Statistically, I will die from a sepsis (complication caused by blood infections), aspiration pneumonia, respiratory complications or an accident caused by my failing limbs.  Suicide is another prevailing cause of death among MS patients.

In August, 2014, the National Institutes of Health published an article titled “Causes of Death among Commercially Insured Multiple Sclerosis Patients in the United States” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4140735/).   This was the result of one of the several recent studies commissioned with the goal of gaining insight into factors which lead directly to death in MS patients.  In this study, for 61% of the patients diagnosed with MS, the disease was recorded as the Principal, Underlying, or Immediate cause of death.  This report portrays a somewhat rosier picture than most other journals I read.

I studied this report, inserting my future into their findings.  In the context of my past Army life, this fight against MS echoes eerie similarities to a military last stand.  Today, with my severely damaged body facing an enemy of overwhelming odds, I have limited options to consider.

I will never quit, never give in, and so it’s unnecessary to review that course of events.

I can stand firm, strengthen my defenses and attempt to fend off the unending attacks that are coming.  With luck on my side, my body may be able to sustain these delaying operations long enough until reinforcements arrive, in the form of a cure for MS.  The odds of enduring that siege until a cure is found are slim, at best.  I don’t want to be remembered for “holding on for a while” while MS ravaged my body.  Besides, I’ve never shown any interest in that level of patience.

My preference will always be for the single viable alternative: attack.  Army doctrine details value for a force in defense to always prepare, while simultaneously denying the enemy and increasing their vulnerability.  When the operational initiative is set, exploit the conditions for a counterattack.  

My body has been on defense since I was first diagnosed in 1999, under intense attacks for the better part of three years now.  Rather than merely making preparations to hold on through a siege, my focus instead remains:

  • Disrupting the advancement of my MS, through medication, treatments, activity and lifestyle.
  • Creating alliances and building reinforcements, through outreach, stories and celebrations with my ever-growing my army of supporters and donors.
  • Collecting and allocating the needed resources, by fundraising to support the innovative research and ideas that will find a cure.
  • Preparing to exploit that operational initiative, the day we find a cure.  

From that point forward we are the ones setting and dictating the course of this disease.  This battle is moving along just the way I planned it!  Perfect.

As years pass, my words are refreshed time to time.  The message, however, never changes.  
Attack; there is no other option and so the fight will go on!


It will never stop…nor will we
It will never quit…nor will we
This is why we fight!


Please consider making a donation to the National MS Society to support my fight:  main.nationalmssociety.org/goto/EMBK


Kevin Byrne - Portland, OR


* Inspiration: Iron Maiden, “Die with Your Boots On”, Capitol Records, 1983

Wednesday, July 1, 2015

Bike MS 2015 - Hit the Lights!



Our tagline captures almost every reason why I ride, write and fight:
Never Stop…Never Quit…


It’s direct.   It’s simple.  It’s the quick quip used to simplify our mantra:
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!


Even in that testament, however, we leave out one ever-present caveat: until.  The fact is this fight won’t be over until a cure for multiple sclerosis is found.  When that day finally comes, we’ll happily move on to focus our passions and support elsewhere.  Until that day comes, that day when until arrives, one word will stand out above all others: NEVER. 

Every day, we face the threat of never.  I struggle with my own worries that I will never again realize the function I’ve lost in my hands, arms, legs and throughout my body.  Others fear that they will never again see the man once they knew as daddy, husband or friend.  We all face a future where I will never be as strong as I was yesterday, waking every succeeding day only to face a repeating pattern of decline. 

But never is also a saving grace, giving me the courage I need to face this threat day after day.  I will never accept my fears, just as my family and friends refuse to succumb to their own, even as they are bearing down on all of us.  Instead, we will always fight…until the day comes when we don’t have to anymore. 

Never is the thought that guides me as we kick off Bike MS 2015.  That single word describes the reason why, for at least one more year, I will dust off “all things Bike MS” to kick off our biggest fight to-date.

With less than 5 weeks remaining until we ride, Team Amulet is sure to be ready for 2015.   Team building and training have been underway for some time; 40 riders strong today and still growing!  Bike MS fundraising events and excitement are also rolling out all over Portland.  There will always be a bit left to prepare, but, as a team, we’re ready. 

Personally, the fight goes on.

I think my body is strong enough to ride on August 1st, but how far I will be able to push remains to be seen.  Every single day changes that outlook.  As I face my fear of never, my preparation embraces the same word.  Never is the reason I continue to push.

My first effort is always the health of my body, as it fights existing damage and faces threats of danger from my MS.  A regimen of medication and supplements compliment my current clinical trial, diet and rest cycle.  I have an army of champions in this corner as well.  An amazing team of doctors, from both Providence Health & Services and the VA Healthcare System, work together to monitor and treat my disease with the best options available today.  Brie is my supporter on a healthy diet, ensuring I remain active in our family and always keeping my schedule sane.  Eleanor is my all-around hand, everywhere in every way, even portioning out my daily regimen into the AM/PM pill dividers for me with her nimble fingers while helping ensure everything is ready, clean and safely stored!

Next, I focus on the strength in my body.  A routine mix of strong workouts 4-6 times a week in the gym, plus our active family life, helps my physical preparation.  In these final few weeks I will take the opportunity to put in some extra work on my legs, ensuring that I can ride the shorter bike route while testing to see if my body can push just a little bit further.

Finally, as we step into this season, the time has come for my spirit to carry me.  Fear and worry must take a backseat for a while, replaced by motivation and energy.  That is where I stand today, braced by the raw motivation and energy I continue to build.  This emotional level is where I’ll stay throughout Bike MS 2015, though many of my friends would describe this as the “typical-KB behavior” they have come to know. 

I look forward to embracing the entire MS community, all of my friends who fight alongside me, through my words and voice.  I’ll welcome new friends, so that we can motivate each other as we fight for the same goal.  I’ll reach out for donations and support as far as my words and voice will carry.  All the while, I will honor and give back to my community by doing exactly what they expect from me: I will never, never stop fighting, until the day comes when I don’t have to anymore.

My focus this year is to exploit that raw energy and motivation fueling my emotions.  The stories I share will echo that sentiment.  Every story will have a theme inspired by the raw energy in my Bike MS 2015 road music.  Every story will bring us one step closer to until.

I am honored to have another chance to fight.  Hit the lights!


It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Kevin Byrne - Portland, OR




* Inspiration: Metallica, “Hit The Lights”, Megaforce Records, 1983

Saturday, April 11, 2015

I’ve got something to say


I am facing an all too familiar scene many of us fighting MS encounter: my ongoing battles are again threatening to put my life on hold.  Stumbling through treatments, my physical disability is worsening; it degrades or prevents all normal activities.  Where I go from here falls under that realm of ‘uncharted territory’.  For guidance on handling these next steps I looked to the past in search of examples to emulate; I looked to that past for something to help me define my future.

I started with my go-to source of strength: West Point.  In 1951, General Douglas MacArthur bade farewell to Congress with a speech that marked the end of a 52-year military career.(1)   Boisterous and controversial until the end, General MacArthur shed some light on his future by paraphrasing a World War I British Army ballad:
Old soldiers never die; they just fade away

September 11, 2011
A 1903 graduate of West Point, General MacArthur is a powerful link to both the history and the future of my Alma Mater.  As a plebe, I memorized many of his quoted words that had become part of the “knowledge” we were required to recall on-demand.  I spent my entire time as a cadet living in MacArthur Barracks.   Years later, my pride beamed through as I posed in front of his statue with Eleanor!

General MacArthur is a legend, many of his words still guide me today, but he didn't have the whole story.


In 1979, Neil Young got a lot closer:
It's better to burn out than to fade away…

During an interview, he tried to clarify this now-so-often quoted line:
…it's better to burn out really bright than to sort of decay off into infinity. Even though if you look at it in a mature way, you'll think, "well, yes ... you should decay off into infinity, and keep going along"
… What's happening right this second?  Is it bright?  Or is it dim because it's waiting for tomorrow - that's what people want to know. And that's why I say that. (2)
Two views of the same action.  Fading away.

Fading away is merely withering away into nothing.  For many, that’s the fear of MS.  That’s my fear of my MS: to slowly disappear, to lose importance, to become weaker.(3)   In most cases, MS is not a disease that just strikes you down, at least not immediately.  MS is a disease of progression.  That progression is often slow, unpredictable, debilitating, and unrelenting.  Catchphrases start to become common descriptions:
     • Fatigue, spasms, numbness
     • Tremors, tingling, pain
     • Loss of balance, loss of coordination, loss of control

When I was healthier man, these words were merely temporary inconveniences in my life.  Now, those inconveniences have become common burdens that are always there.  Tomorrow, some may worsen a bit or be joined by newly developing issues.  My best hope for the moment, with existing medications and treatment, is only to try and slow the progression or ease the symptoms.

My struggles will worsen but I won't fade away.  How do I do that?

Quite a few have echoed Neil Young’s mantra in their own voice.  Kurt Cobain is possibly the most notable of them all, quoting Young for his parting note in 1994.(4)   He missed the point, however, since that suicide darkened any bright glow sought.  In my struggles, I have seen what that option looks like.  That single dramatic moment is not burning out.  Instead, you are losing importance, becoming weaker, disappearing…  You are fading away.

Some would say Kurgan knew it best (the immortal from the 1986 movie Highlander). (5)
I’ve got something to say.  
It's better to burn out than to fade away!

What he did with his time may not be ideal, but he had a great plan.  It is indeed better to burn out...but not too quick.  Kurgan was 3,016 years old…
OK, maybe I won’t last that many years but I still have a long way to go!  I need to fight back against my body’s attempts to just fade away; that is what I will always do.

When I could not ride a regular road bike anymore, I rode a recumbent bike.  When I couldn't ride that, I rode a trike.  If I can't ride a trike in the future, I'll figure out the next step and fight the attempt to just wither away.

When my career in the Army came to the end, I rebuilt and moved on.  When everything crashed again, I regrouped and moved forward.  Now I am facing another crossroads, and I am resisting every effort that my body raises to fade away.

I’m searching for a path again.  All the time moving on, letting go of what I’ve lost in my past by replacing that loss and preventing a void.

I will not fade away.
It is better to burn out.

To burn out is to grow hotter and brighter as you go.  When your flame eventually extinguishes, the irons and embers you hold will still glow bright.  Even when those fade, as all eventually do, the images seared by them remain.  Those images can live on, to remember and inspire new flames.

My goal is to never fade away.  For now, I will create irons and embers as my flame burns hotter and brighter.  Those irons and embers are my strength, my love, and my fight.  I will sear their images into others through memories of that fight, stories I write, and lives I impact.  


I’m not sure how this battle will end but as long as I don’t fade away, I’ve already won the war.

Today’s fight is just my next step, not my last caress!

It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Kevin Byrne - Portland, OR



Sunday, December 7, 2014

The Corps


It has been 15 years since I was first diagnosed with multiple sclerosis.  There aren’t many things I have been as long as I’ve been “fighting MS” since 1999.

  • I’ve been a husband to my beautiful wife for only 8 ½ years.
  • I’ve been a daddy to Eleanor for only 4 ½ years…8 to our puppy, Monte!

Sometimes I will field questions about my past:

  • Aren’t you a “New Yorker”?
    Well, I grew up in the Bronx but now I’ve lived in other places longer than I was there.  I’m a Portland resident now, with my family.
  • Aren’t you an “Army pilot”?
    Well, I flew the Apache back in my Attack/Air Cavalry days, but now I’ve been medically retired longer than I was in.  
  • Aren’t you a “West Pointer”?
    Yes.  Yes, I am.  Class of ’93!

West Pointer.  Fighting MS.  For me, these terms have become defining characteristics of who I am.  For others, they are positive assurances to others of what I can do.  A few weeks ago, a friend of mine who’s a younger grad familiar with my MS struggles, asked me when my West Point connection became so strong.  I never gave much thought to it before.  My immediate reaction was simply “I don’t know.  It just seemed to grow stronger over time.”

It is ironic that my love for all things West Point is most closely linked to my fight against MS.

I’ve never really considered myself a “Gray Hog” (someone endeared to the cadet lifestyle), but my connection has indeed grown stronger over time.

My adventures with West Point started on June 28, 1989.  R-Day: Reception Day for the Class of 1993.  It is day I will never forget, though I’m unable to recall most details other than almost blacking out on my feet during our swearing in ceremony late that afternoon.

 After that long first day of in-processing, issuing new articles of everything, and learning the very basics of formations/marching/saluting, we headed out to the parade field for our swearing in ceremony.  After standing at attention for what felt like an eternity, everything went dark.  Instead of bad becoming worse, good fortune stepped in at about the same moment.  The ceremony completed and we started marching. I-4 - the last platoon off the parade field.  As the blood came back to my head and my vision returned, all I remember thinking was “what did I just get myself into?”

On June 28th I was exactly 17.5 years old.  Before applying for admission, I never knew someone who went to West Point.  Little more than a year before that, I received a brochure in the mail; a standard flyer sent out to high school juniors who scored well on their primary college entrance exam.  The brochure depicted notable graduates through the years and simply stated “much of the history we teach was made by the people we taught” in bold letters across the top.  That was it.  From that moment on, attending West Point was what all that I wanted to do.  In addition to West Point, I applied to the Air Force Academy (I could never envision myself a Navy-man) and a state school (just in case) but I never really gave a thought to anything else.

Over the next year, I learned what it would mean to graduate from West Point.  I would become an officer in the US Army; that was what I wanted.  Before R-Day I already knew where I wanted to be stationed after graduation (Ft. Bragg) and what I wanted to do (Aviation, flying AH-64 Attack Helicopters).  I had my career planned out; well, at least what would be my first four years after graduation from West Point.  I guess I thought about the future as much as you can when you are 16 and 17 years old (not much).  But on 28 June 1989, at about 1600 hours, thoughts of the summer to come were all I had.  “What did I just get myself into?”

I’m not sure when my initial allure of West Point transitioned into the deep love that I have for The Long Gray Line today.  I do know two things:

First of all, I know my emotions have spanned a broad range of cliché terms.

  • Initial awe and reverence gave way to fear of those above of me.
  • Fear turned quickly into obedience, then respect, for those classes ahead of me and those who graduated before me.  
  • The “me” quickly became the “us” of my fellow plebes.
  • My fellow plebes became the Class of ’93, then Defenders of the Free (simply, Defenders).
  • We were plebes, yearlings, cows, then firsties… but we were always Defenders first.
  • We were part of those ahead of us, as well as those who followed us.  We were “The Corps” and “The Long Gray Line.”
  • Finally, we were Grads; stuck between Cadets and Old Grads.  We yearned to call ourselves Old Grads.
  • At some point those clichés gave way, back to the awe and reverence of The Long Gray Line.  

Second, my “some point” was when I was diagnosed with MS.  Since that day in 1999, there has rarely been a moment in my fight without guidance and inspiration from The Long Gray Line… always pointing the way.

  • My MS issues first arose while overseas in Korea, commanding Delta Troop, 1-6 Cavalry (Darkhorse).  Seth O'Brien ’94, our Squadron Flight Surgeon, was there to first diagnose my issues as neurological.  After a short debate with me and my self-diagnosis, I was sent back to the states for further testing.  After my diagnosis was confirmed and I returned to Korea, Seth was there to administer my care.  Travelling out to a field site with a box full of IV-steroids, I rejoined my squadron while they were deployed for training.  I was scared, struggling with trying to recover damaged vision and basic motor functions.  Far from ideal circumstances, I was comforted to have him caring for me as we reminisced about our overlapping year together in Company A-4.
  • When I travelled to Tripler Hospital in Hawaii for that full diagnosis, Terry Walters ’80 had been notified of my condition and was on the lookout for me.  As the health clinic commander, Colonel Walters oversaw my extensive testing (including two less-than-pleasant spinal taps) and personally walked me through those first steps of my new MS life.  A graduate with the first class of female cadets, her accomplishments are extensive and impressive, including having tolerated the less-than-professional sarcasm of one scared Captain!
  • The immediate response was to re-deploy me back to the states, but I balked at that idea.  Unsure of what was next, I wanted to stay with my troop.  For an Air Cav commander, back with my troop was the only place I felt safe.  But a sick soldier - a pilot grounded from flying and requiring intense treatment, nonetheless - is not ideal for any overseas deployment.  It’s even more challenging if that soldier is in command.  EJ Sinclair ’76 made it happen anyway.  As the 6th Cav Commander, Colonel Sinclair fought for the approvals needed to keep me in-country and start treatment there.  Nine months later, he was also the person who sat me down to clearly explain that my career in attack aviation would never progress.  I guess I knew it for some time but I still needed to come to grips with all the new realities on my own terms.  EJ gave me the time I needed; then he gave me the nudge needed when I was afraid to take the next obvious step.  

For a long time, I resented that nudge.  At some point I realized what he did was absolutely correct.  Correct for the mission, for our soldiers, and for me.  My Army days drew to a close.  In only a few weeks, I relinquished command and was bid a fond farewell by my Darkhorse family.

What those three West Pointers did for me during my last year in the Army was exactly what we expect officers of their caliber to do; it was exactly what they would have done for me regardless of where I went to school.  That was the spirit embodied by West Point, and their lesson is the spirit I work hard to venerate and emulate.

I left Korea at the end of June 2000.  By October, I was fully evaluated and out-processed from Walter Reed Hospital in DC.  Now settled in Pittsburgh, PA, I began my new life.  I didn’t reject my military days.  On the contrary, I found it quite difficult to come to grips with the fact that I was no longer an attack helicopter pilot, troop commander, an on the move Army Captain who was destined for bigger and better things.  Instead, I was now a “market maker” and team leader with FreeMarkets (online business-to-business sourcing).  I learned to adjust to this strange new world, but I didn’t like it. I wanted to be back in uniform.  When the events of 9/11 sent our military into action, a big part of me was angry that MS took away everything that I had, everything that I was and everything that I had trained to be.

  • Two grads demonstrated what it meant to still be a West Pointer: Dave McCormick ’87 and Mike Dunn ’87.  Dave, whose brother is one of my classmates, was our CEO.  Mike was a senior manager.  They didn’t need to wear a unit patch on their sleeve.  They didn’t need to start every conversation with their class year, rank, badges, and awards.  What they did was demonstrate for me that Duty, Honor, Country in the civilian world was exactly the same as Duty, Honor, Country in uniform.  There was no difference in the expectations held for me, and no grace period given to adapt.  

That was my first lesson of the far-reaching bond we held for no other reason than because we are part of The Long Gray Line.  Good favor was not blindly extended, but expectations regarding character and performance were put in place when your ring was earned and they are still in place after your time in the military is over.

  • I would be remiss if I didn’t mention another contributor to this lesson while with FreeMarkets.  Dave Dawson, Annapolis ’88, was one of my directors and my first exposure to just how far the Army/Navy rivalry extended beyond the Department of Defense.  I still remember Dave’s smug chuckle after the 58-12 rout by the squids in 2002.  After 12 years of painful losses, we will prevail this year, Dave…this year. Beat Navy!

For a while, my MS wasn’t the predominate focus in my life.  I was afforded a valuable, albeit short, time to settle professionally, personally, and realize that what I developed during my 11 years in uniform hasn’t disappeared overnight.  That would prove valuable for me in 2003, when most of my recovery of the last few years abruptly ended and my MS threated to take everything away.  For the next few years, my focus changed to stopping the damage, recovering, and regaining the ground I lost.

With the strength I learned from West Point I was able to build that focus and to fight for myself.  Fighting for myself was no longer enough.  The Long Gray Line was poised to remind me of that fact.

  • John Shaw ’06 was a soldier in D/1-6 during my command.  Long separated from our Darkhorse days, John reached out to me just prior to entering his third year at West Point.  Cow year was when further Army commitments were incurred, so like so many West Pointers before him (including myself), the desire for a little guidance and insight led to a grad.  That was my first calling to use my experiences towards the continuing mission of West Point: to educate, train and inspire the Corps of Cadets.  MS or not, I still had that charge

The fact that I was now retired and separated from the profession of arms only expanded that charge.  West Point’s alumni association, the West Point Association of Graduates (AOG), is charged in serving West Point and its graduates; its purpose is to further the ideals and promote the welfare of our Academy.  I now chose to further those ideals, to support others as I continued to better myself.

My new charge was in the MS Community.  Because of West Point and The Long Grey Line, I was now ready to fight.  At that time, the best way I could do both was by riding and fundraising for the National MS Society.  I started riding in 2003, riding in Western Pennsylvania and New York City, then later in Delaware.  Through the MS Society my advocacy grew for those who needed my support, as did thanking those who supported me in my need.  My physical and emotional health was stronger.  The AOG stood with me and helped share my fight in our Assembly Magazine.

  • One of the first grads to help me celebrate my success and support my efforts was John Brier ’43-June (there were 2 graduating classes in 1943, expedited to support the effort in World War II).  Colonel Brier helped me start tying it all together.  Shaken handwritten notes from an Old Grad offered support I needed and helped me see the power and reach of The Corps.  Support for my fight, random notes of encouragement, and a silver baby cup (sent on Eleanor’s birth, with wishes from June ’43) reminded me of an earlier lesson……

    In early 2002, I was living in Brussels while still working with FreeMarkets.  Enjoying a quiet Sunday brunch, I curiously peered at an older couple sitting across the room.  There was nothing exceptional to note except for that ring; they do indeed stand out.  Not pursuing the thought further, I resumed my meal only to be interrupted as they were leaving.  I was wearing an Army/Navy t-shirt and that was all the impetus he needed to inquire.  We chatted: 1993 and June 1943…West Point was our common link.  The conversation was brief, as the happy couple was enjoying the last day of their vacation.  After only a few moments, his wife had to pull him away with a smile and frustration she has surely expressed many times before: “You guys are all alike.”

    We both shrugged our shoulders and went on our way.
    Indeed, we are all alike; the Class of June ’43 made that connection for me.

In June 2006, now together as a newly married couple, Brie and I headed west to begin a new life together in Oregon.  Having already started our annual fundraising before we moved, our plan was to return in September for one more “Bike to the Bay” event with the Delaware Chapter of the MS Society.  Within a couple of weeks, however, I was in the hospital fighting reactions to my medication and in danger of leaving the hospital without my leg (if I left at all).  I made it through that challenge, but recovery would take some time.  We returned to Delaware in September, determine to ride.

  • Joining Brie and me was John Macdonald ’79.  One of my battalion commanders when I was a lieutenant at Ft. Bragg, Brigadier General Macdonald needed a weekend off from his hectic work at the Pentagon.  What better way to rest than by biking 150 miles for MS!  I surely needed the motivation and inspiration.  Every mile, every inch, John was there to support me.  He would help me extend and stretch my leg at rest stops, allowing my still open wounds to stretch and express the fluids that built up.  Along the route, he would motivate and push me to keep pushing.  When he thought I could no longer push myself he would grab my handlebars and pull my bike.  It was quite a surreal experience to curse at my former commander, yelling for him to get his damn hands off my bike and barking that I can do it. 

In the end, I did complete the ride.  Over time my leg healed.  More importantly, I finally started to piece together all of these seemingly random events and circumstances.  Only then did I realize that they were not at all random.  All of these instances are the direct result of the spirit, drive, and energy that was instilled in each of us while at West Point.  They didn’t support me because I was a West Pointer, they supported my because it was the charge they were given:
Duty, Honor, Country: those three hallowed words reverently dictate what you ought to be, what you can be, what you will be. They are your rallying points: to build courage when courage seems to fail; to regain faith when there seems to be little cause for faith; to create hope when hope becomes forlorn. 
Nothing better describes me in every instance of support from The Long Gray Line:
    • when courage seems to fail
    • when there seems to be little cause for faith
    • when hope becomes forlorn
No, they didn’t support me because I was a West Pointer.  Instead, they expect me to support others because I am a West Pointer.  In fact, they demand it.

  • That’s where Terry came in.  Terry Connell ’58 was the President of the local AOG chapter, The West Point Society of Oregon.  To Terry, I was a West Pointer.  That overshadowed the fact that I was disabled, that I had MS, or that I struggled every day.  He knew that I could face all of those challenges.  He knew that because I was a West Pointer.  Those traits I learned would help me battle my ailments just as he knew they would help me to be a better leader, friend, husband, and now a father.

This will come as no shock and surprise to Terry, but he was absolutely correct.  With his help and guidance, I embraced The Long Gray Line like I never knew possible.  I stand and support them for no other reason than it is the charge I was given.  I am proud to have served the last four years as our Society President, and I look forward to supporting them for even more.  I lead, support, and celebrate with all of our Alumni.  Together, we strive to demonstrate those values of Duty, Honor, Country.

  • To our community and our nation, to whom we will always remain in service.
  • To our current cadets, who will soon carry that charge as leaders of character who serve the common defense.
  • To our active duty and citizen soldiers, who carry that charge today.

My MS is the reason I learned the true gifts of my Alma Mater.  I was once, and hope someday to again be, defined as a West Pointer without the also-known-as “fighting MS”.  I can’t, however, fight my MS without the strength and support I gain from all my friends in The Long Gray Line.

My years at West Point were bookended by two of the most influential lessons that I draw upon daily in my fight against MS, marked by Grads who always held my awe and reverence.

  • In my plebe summer, John Bahnsen ‘56 gave that first lesson of ideals that West Point will instill in me: what is means to have the “Want To” needed to do absolutely everything that’s required before we win; to endure and persevere in the face of unyielding opposition.
  • In the spring of my graduation, Robert Foley '63 laid the groundwork for my understanding of what is meant to Never Stop…Never Quit…  As I listened to our Commandant tell stories of West Pointers through the years, I remember the awe and reverence I had for those soldiers. 
On April 30, 2008, I reached out to The Long Gray Line with our 2008 BikeMS fundraising message:
I am deeply honored by your graciousness and the support from The Long Grey Line around the world!  Donations from the Class of ’43 to ’06 really showed me our strength 
It is a fight. For approximately 400,000 people with MS in the US, the fight is not over and it won't be over until the cure is found. 
It will never stop….nor will we
It will never quit….nor will we
This is why we ride.

General Foley’s lesson simmered and stirred in me for 15 years.  That lesson is now our mantra and the cornerstone of our fight: www.neverstopneverquit.com.
Throughout these years, there has been one constant.  The Class of 1993.  My classmates have covered every concept of support, in every way imaginable, both before and after my battle with MS began in 1999.  In the Army, we grew together each step of the way.  It’s impossible to express every moment of support and camaraderie from R-Day in 1989 until my final day in uniform in 2000.  It’s even more difficult to express the growth of that support and camaraderie every day since then.
For fear of accidentally omitting even a single name, I choose to just group us all together.  Every bit of thanks and every praise I will ever express for a member of The Long Gray Line can easily be supplemented with the phrase “and every single Defender as well.”

As someone battling MS, this support and service is needed as I battle every moment of every day.  More and more, West Pointers continued to shoulder the burden of that battle with me.

  • Some donate and support our BikeMS efforts every year.  
  • Some ride with us, as part of Team Amulet (’68, ’80, ’93, ’99), and on teams across the country.  
  • Some offer never-ending support and spread the message of our fight and our need every day.
  • Others share that fight with me, battling their own MS or other grave affliction
  • Some do all of these things together...

I use lessons from The Long Gray Line every day of my fight.  When my courage seems to fail, lessons drive the Want To needed to fight; to do everything that’s required until I defeat MS.  Those times when there seems to be little cause for faith, I remind myself to Never Stop… Never Quit…  because that is what so many did before me; that is what they would do now; that is all the expect from me.  If I ever start to feel that hope has become forlorn, I grip hands with The Long Gray Line.  It may be a random social gathering, sharing over Facebook or email, or just reading/remembering stories of their examples.  On those tough, lonely miles of BikeMS they are there in spirit to motivate me and pull me when I can’t push myself.  That is the reason I don’t stop.

So, as I close out this year’s fight with MS my thoughts go towards the question “what’s next?”  The answers about my future start with visions of ghostly assemblage.

  • The Old Grad in my fight against MS is Paul Walters ’33 (1908-2011).  I never got to thank Colonel Walters in person.  He found me because of one of the AOG’s profiles on my fight.  I received my most powerful message in a simple note:
    You’re an inspiration
    Keep up the great work!
    - Paul and Betty Walters ‘33

To even think that the little bit I’ve done could be considered an inspiration to this man, who graduated 60 years prior, only drove me to do more.  His task succeeded: Colonel Walters and Betty educated, trained and inspired me with the stroke of a pen.  They still do; my career of “professional excellence and service to the nation” didn’t end in 1999.  In fact, it was just beginning.

Well done, Colonel Walters!  Be thou at peace…
We’ll take it from here!

To my fellow Defenders, my friends in The West Point Society of Oregon, the West Point Association of Graduates, and all my family in The Long Gray Line: GO ARMY!

It will never stop…nor will we
It will never quit…nor will we
This is why we fightBeat the Hell out of Navy!

Kevin Byrne - Portland, OR





Tuesday, October 21, 2014

Tell us why you want to end MS, Kevin

I received an email today, a message from the National MS Society.  The subject was clearly stated: Tell us why you want to end MS, Kevin

It’s a petition but there’s not a clear political, financial, or social campaign associated with the question.  The goal of Katharine George (National Sr. Director, Database Marketing) is to “rally the MS community and together we can build on the momentum of recent promising research projects and do more to help everyone with MS better navigate the challenges of life with this disease.”

I’m not one to randomly click on links, but I know the source and it’s legit.  Besides, I’m kind of curious to know what she’s really asking for.  So, OK, I’ll bite.  I visit the site: (https://secure3.convio.net/nmss/site/SPageServer/?pagename=HOM_FY15_10_oct_survey&s_src=DHODI151042WEB). 

Clustered on the page is one line that stirs my response:
  • Tell us why ending MS is important to you
I can do that, Katharine, but your little response block on the page won’t do.  Please bear with me.

***********
Why do I want to end MS?
Because my MS will not stop its attack on my body

It has been 15 years since I was first told “you have MS.”  In a flash, I lost most of the focus in my life at the time.  I was as a 27-year old Army Captain, an AH-64 Apache pilot serving overseas as an Air Cavalry troop commander, living the life that I always dreamed about.  Then I wasn’t.  I became a 28-year old patient at Walter Reed Army Medical Center in D.C., learning to live with vision issues, pain, mobility challenges, and the psychological damage of facing the rest of my life in a chronic state of disability.

I recovered; not everything but I recovered a lot.  I built a new life for myself, both personally and professionally.  I comfortably managed my MS.  Though MS symptoms and treatments were always a part of my life, I was still able to manage.  I began to focus on giving back to the MS Society; riding to raise money and awareness for those who helped me through my dark days.  With amazing personal adventures and fulfillment, exciting domestic and international assignments, I was living the new life I was now dreaming about.  That didn’t last long.  By the time I was 32 I had lost everything again and was faced with increasing physical and emotional damage.

My family and friends bore a heavier burden with me this time, more than they deserved, but again I recovered much of what I lost.  I regained my strength, fell in love with an amazing woman, and built a new life that is stronger than all of my old dreams combined!  Together, we thrive, fight, fail, suffer, recover some, then create more.  I don’t lose everything anymore, because Brie is there to share that burden and help me recover…time and time again.
  • We lived, loved, and married.  At 35-years old my next battle nearly cost me my life.
  • We recovered and thrived… I climbed mountains… and we welcomed our daughter into our lives.  At 39, 40, and 41-year old we battled infections, medication reactions, and further debilitation from the progression of my disease.
I am now 42-years old and battling the constant onslaught of secondary progressive MS.  We see my own worsening condition as well as the ongoing struggles of our vast MS community.  We welcome new research and new treatment options available; at the same time we welcome new members into our community.

Through this all, Brie and I remain focused on fundraising, advocacy, and awareness.  Somehow, we consider ourselves lucky.  We know that it can get worse.

We need to do something before it does.

***********
Why do I want to end MS?
Because my MS is not unusual

Every person’s MS is unique.  The daily struggles of my MS are nothing like those experienced by the hundreds of close friend with whom I share those letters with….MS.  Every struggle is vastly different, yet we all understand the bond we share.  We understand their setbacks and pray for them when we’ve been in ‘that place’; we admire their strength when they show us how handle the challenges faced; we look on in fear as they battle through something we haven’t dealt with…yet.

The first 15 years of my MS was more severe than it is for some, a breeze compared to others, yet most often quite similar to most.  My progression is, in many cases, a mirror image of the ‘statistical average’.  That scares the hell out of me since I am familiar with the average progression of MS.  On the other hand, that puts me right in the spotlight of cases to consider for treatment and candidates for success when we do find the answer!               

***********
Why do I want to end MS?
Because MS is hurting my family and friends

Brie and Eleanor suffer from my MS every day.  One came into this willingly, yet she knew me for a time as an active husband.  The other is the picture of innocence, who doesn’t even know what it is like to have a healthy daddy.  For both, every change in me brings with it an additional burden on them.  They watch as my MS takes me from them.

All too often, my MS becomes the issue and focus that others have to deal with.  My family and my friends care for me, provide the assistance I need to carry my through the difficult times, celebrate me when I see success, and advocate/fundraise/support me in my fight.  When there is cause to celebrate, they are joyous for my success, yet during the hard times they share in my burden and take all too much on their shoulder.

I let them all do this, for I can’t do it alone.

One question:
Why do I want to end MS?
Three reasons:
Because my MS will not stop its attack on my body
Because my MS is not unusual
Because MS is hurting my family and friends

It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Kevin Byrne - Portland, OR