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

neverstopneverquit.com

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

neverstopneverquit.com

Perceptions

My friend, Don, scolded me recently.  It had been quite a while since I had to sit through a stern lecture regarding the poor choices I was making.  The conversation went something like this:

Don: You've got to slow down, Kevin.  You’re doing too much and pushing too hard.

Me: I’m just doing what I can.  I can’t just sit still.

Don: If you do too much with your MS, you’re going to end up hurting yourself.

Me: But, Don, you do a lot.  You climbed up on your roof, cleaning moss off the other week.

Don: Yeah, but you've got to be careful about pushing your body too hard.

Me: But, Don…you’re completely blind!

Don: Yeah, but I’m not going to get any more blind.  You could really do some damage if you do too much.

Me: But, Don….never mind.

How difficult and challenging something is really does come from the unique perspective of each individual.  For me, Don’s my pillar of strength.  Although I like to imagine myself in the Daredevil superhero role, Don truly is "The Man Without Fear".  He’s the stereotypical blind lawyer turned superhero… the man who always seems to push too hard yet somehow manages to blow past the expectations and limitations anyone thought they had about him.  Don provides me valuable insight on perceptions and what to do about them.

I live in a strange world these days; a world where I struggle to bridge that gap between the perceptions that other people have about me and reality.  My MS creates perceptions in my family, friends, and everyone I interact with throughout the day. 

Sometimes I hear words like brave, inspiring, and motivating when others describe me.  Some people are impressed by what I have done in spite of what has happened to me.  Others admire my continued energy in spite of what is going to happen to me. 

…but that’s not reality

The reality is that I am scared, embarrassed, and disheartened when I try to describe myself.  I am continually critical of what I am doing; unsure of what I can or should do next.

…but maybe that’s my perception

My own perception is the most dangerous one of them all.  I get wrapped up in trying to predict or manage the image that others might have in me and my MS. 

If I push my body hard, against the limit of what my MS can do, will others see this as irresponsible and dangerous? 

The answer I found here is ‘sometimes’.

If I take it easier, resting early to conserving my energy, does that come across as lazy and taking advantage of my situation? 

The answer I found here is also ‘sometimes’.

How do I respond the next time I am confronted with these reactions (I experience them every day)?  Do I need to try and understand their perception?  Do I need to work to correct or adjust it? 

This is where Don comes in.

My talks with Don help me bridge the gap between all of these worlds.  He isn't overly-impressed by what I do (nor should he be).  Then again, he never takes pity on what is happening (nor should he).  He shows me the reality of my struggles through stories of his own past, before he had it all figured out (my words, not his!)

Don knows that there is something else. 

But what?  If the perception of others isn't reality and my reality is just another perception, then what is the real state of my MS? 

·         How am I handling everything? 

·         What am I doing right/wrong? 

·         What should I do more/less?

My energy usually goes into managing perceptions.  I feed off of the motivation that others see in me.  I push to do more to try and live up to their perception or overcome my own sense of reality!

Then there’s Don, pulling me from the extremes of every perception.  Don caught me off guard with his little lecture the other week, but I realize there was another plan.  I’ve been too wrapped up with what I have done and what’s right/wrong with my current focus.  I need to think about the future, the next steps to take.  If I don’t then I can really do some damage.  Worse than that, I might miss out on valuable time and opportunities with those I hold dear.

I got it, Don.  Your lecture and your example are clear.  Don’t do less…don’t hold back…but don’t go into anything unprepared!  Winter is coming; my historically tough season.  I can’t try and push my body through everything again.  I have proven that will not work.  This time I will focus and plan to:

·         Strengthen my body and mind to move along the ‘better’ path, in a way that’s faster, safer, and gets me where I need to go.

·         Guide my way around obstacles.

·         Prepare so that I can pull myself, and let others pull me when needed, through the toughest challenges.

What is the real state of my MS?  I don’t know if I will ever find the answers to all those questions I posed.  My guess is that complete answers really don’t matter.  I am entirely responsible for what I do with my MS, and I think that’s where perceptions will come in.  How I react to reality, rather than the nature of that reality itself, will form any impressions.

I’m not sure if I will ever change the whirlwind of perceptions about me and my MS, but I guess that's not so bad.  If someone considers me inspiring and motivating, that’s simply a reflection of how I've chosen to respond to reality. 

Besides, it’s good to feel like a superhero once in a while!  Wouldn't you agree, Don?

It will never stop…nor will we

It will never quit…nor will we

This is why we ride fight!

Kevin Byrne - Portland, OR

neverstopneverquit.com

I Can Feel Myself Becoming Right Handed

                                                        *with apologies to The Dead Milkmen

I’m a lefty; a southpaw from the start. 

Unlike many who straddle the fence in a right-handed world, I have always approached everything from one side.  In sports, throwing a ball, batting, and tennis were always natural from the left.  Much to the chagrin of my Catholic school grade school, I even resisted the pressure to learn writing with my right hand.  Everyday items which are made for righties (scissors, computer keyboard & mouse) are awkwardly used with the left; that has always felt natural instead of learning the ‘correct’ use them with my right.

When my MS first struck, I was lucky (sort of).  Much of the damage and loss of feeling affected my right side.  The difficulty created was most noticeable during activities requiring two hands.  If only one was needed, my natural preference took over.  There were times when I inadvertently used my right hand; occasionally the use was intentional just to see if I could…  The result was often a calamity of broken glass, bruised/burnt fingers, or food scattered all over the floor (Monte always loved those moments)!

In late 2010 I started to observe changes; dramatic improvements in my coordination and control.  I wrote about the theories of rerouting signals along the neural highway in January ’11 (Tools for Rewiring My Body).  My 8-month old daughter did what no other treatment or drug could accomplish: Eleanor forced my body to overcome some of the nerve damage caused by MS.

Within a year or so, I could confidently state that the originally-diagnosed “60% loss in my right chest and arm” was probably closer to 30.  The feeling in my hand never returned but I could now perform many basic tasks with relative comfort and ease.  My favorite line of that story is the last: For the first time, I am excited to wonder what will happen to my body when I wake up tomorrow?  About two years ago, I woke up.  Damn!

Everything changes..again..

It’s 2014.  15 years have passed since my battle with MS first started.  My larger issues are now on my left side.  Loss is now measured in different ways.  Lost feeling, coordination and control have given was to pure physical weakness.  There are days when I can’t lift or perform basic tasks with my left hand, arm or leg.  Even on good days, there are intermittent times when everyday tasks become impossible.  Eating with a fork, lifting my arm to raise a glass/brush my teeth/shave, or lifting my leg to put on pants are some of the most basic tasks that can now stop my day in its tracks!

Most leg-tasks require both to work sufficiently for me (walking, running, or biking) but there is a lot that I can do with one strong arm and hand.  In the past, the fact that I’m a natural southpaw softened my MS challenge a bit.  Now, I’m a 42-year old man learning how to use new hands. 

For help, I often go to the experts on learning.  I observe my daughter, as well as other children, to gain clues on ever-changing bodies and function.  It really is a miracle to watch their developing bodies, and quite humbling to try and mimic their tasks.  Slowly but surely, however, I am learning to function.  When my left side is especially weak and immobile, I can perform the basic tasks I need through those tough days.  I’m still not that graceful with my right side but, if required, I can finally eat without sticking my fork in my cheek!

I’ve seen this and wrote about it before…

This will change.  If there is one thing I know about MS, I know this will change.  Maybe my body will rewire again, allowing me the chance to recover some lost damage on my left side.  Maybe it will get worse and require more significant Adjustments, Concessions and Embracing the New.  The reality is that what eventually happens does not matter.  In my fight with MS, I will continue to have the Want To dedication to do absolutely everything that’s required before we win.

So I will learn to become right-handed.  I will train my body (and my mind) to become comfortable with moving and functioning in stark contrast to how I developed for the first 42 years.  After all, how hard could that be?

At the same time, I will fight becoming right-handed every step of the way.  While my left hand and arm continue to work I will rehabilitate, train, and condition.  I just might find a way to overcome the damage and rebuild/regain my strength.  Maybe I will just delay the inevitable.  But maybe, just maybe, I will hold the damaging effects of my MS long enough until we find the treatments that will cure/prevent/fight this disease! 

Any way this goes, I will Never Stop.  Regardless of what it takes, I will Never Quit.

The stories I have been writing for over four years are my reminders.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

 My left on a good day…

My new right…

Kevin Byrne - Portland, OR

neverstopneverquit.com

What could we do with $43,000?

Beautiful weather, great friends, and a gorgeous scenic route set the stage for my 12^th year participating in the National MS Society’s BikeMS.  My successes and struggles throughout this weekend’s event leave me pondering one simple question: what could we do with $43,000?

$43,000 funds the average research grant.  One of those grants holds the keys to my future and our goal of a world free of MS.  That is our driving focus and the reason for my 2014 fundraising goal.  This year’s ride is finished, but the fight still goes on.  Before I can celebrate, thank all of our sponsors, and rest, my charge is to show you the value of raising $43,000 and what we can do with it.  Your donation to http://main.nationalmssociety.org/goto/EMBK will help me meet and exceed that goal.

This story is about what is means to me……

That was then, this is now

It has been 15 years now since I first heard those words "You have MS".  Like many others, my course has been a daily struggle with pain and damaging effects throughout my body.   My Army Aviation days are long past, but until recently I was able to recover from setbacks and rehabilitate through my limitations.  Just a few years ago, I climbed mountains (Rainier, Hood, and St. Helens), rode STP (Seattle-to-Portland bike event), and ran 10k Mud Run obstacle courses.  My MS was under control.  

For years, I was stable thanks to the disease-modifying agents developed through prior research and development.  There are 10 FDA-approved disease-modifying agents for many people with relapsing forms of MS.  That research gave me life, and it continues to benefit hundreds of thousands of people struggling with this disease. 

Today, I’ve lost some that stability and control.  My condition is now classified as Secondary Progressive MS (SPMS); the disease will begin to progress steadily without any specific noted relapses, just a continual decline.  There are days when I am unable to raise a fork and feed myself, button a shirt, or even take my puppy for a walk (Monte! does not like those days).

There are currently no approved treatments available for SPMS. 

Never Stop…Never Quit…

Fighting back is the only option.  I am participating in a 2-year clinical trial that will look to stem the progression of my MS.  This is a random, double-blind study.  That means there is only a 50/50 chance I am receiving the treatment rather than just a placebo.  If I am, then the challenge now shifts to the success of this clinical trial.  There are dozens of studies under way for the various form of Multiple Sclerosis.  Grants fund research fellows who lead the studies that precede these clinical trials.  Somewhere in this research is the treatment for my MS.  Until we find the treatment, I will fight in the only ways that I can.

This is why I ride!

First and foremost, riding gives my body the chance it needs to fight back.  MS-related issues have severely diminishes my balance, muscular coordination and strength.  My hiking/climbing days are limited to struggles of limited adventures (read about my most recent Angel’s Rest trek).  My biking was also revised, from 2 wheels to 3; another concession I was forced to make back in 2012.  I continue to power on; there is no other choice.

As BikeMS arrived, I made my way to Monmouth, Oregon on Friday unsure of what my body could do.  Only two days prior I was in the hospital for evaluation of current ailments.  Illness had stressed my immune and nervous systems, further wreaking havoc on my body.  The only hopes I had were a reprieve from further issues, then maybe a boost of energy.  My answer came in that euphoric high I can only experience from the energy and excitement of BikeMS!  33 other riders joined me on Team Amulet this year, about 600 riders in total ready for two days of riding, resting, and celebrating our collective goal: to create a world free of MS!

We rested and celebrated in style!  It’s always great to spend BikeMS weekend with family and friends!  Coworkers from 13 years ago as well as today, fellow alumni from West Point, neighbors, members of our MS community, and random friends (old and new) all joined Brie, Eleanor, and me as close-knit family.  For Brie and me, this is our favorite holiday of the year (Eleanor would probably vote for Christmas…).  Seeing my other MS friends were both my favorite moments and the hardest parts of the weekend.  I would enjoy the excitement of one’s improved mobility and function, then moments later sharing in the sadness we all experience with every example of further debilitation.  There’s not a soul at this event that will rest easy until the devastating effects of MS are a distant memory for all.  The money that we raise goes towards the caring for those with MS today, as well the research to find a way to prevent new MS cases tomorrow.

When the time finally came, I rode.  For the moment I am no longer a member of the century club (100 miles on Day 1).  Instead, I had to settle for the shorter routes on both days (33 and 35 miles).  The most noticeable issue this year was the loss of strength and coordination in my left leg.  The muscles just don’t stretch and pull like they should; the ligaments don’t stabilize my ankle and knee.  Simply riding my trike was an awkward and difficult task, requiring every advantage I could give myself.  So I strapped my ankle down, immobilizing the weakened joint, and lifted my leg to clip in to the pedal.  That’s where it stayed, strapped into my trike until the routes were completed each day.  I’m fortunate that the rest of my body is strong enough to push me through these ailments.  Throughout the weekend, that was my constant reminder to do whatever it takes to maintain conditioning.  Until we win, my body needs to be prepared for the constant challenges MS will continue to throw at me.

The weekend was a huge success!  Yet again, I rode and affirmed my vow to not let MS win this fight.  Every friend there celebrated my victory with just as much elation, for they knew my struggles.  Without their motivation and support, fighting would be next to impossible.  I also had the opportunity to savor the victories of my friends, as well as sharing in their loss and pain.

The weekend was over all too soon as Brie and I returned home Sunday afternoon.  Monday morning, I was back at the hospital for more testing.  I still don’t have any answers or treatments for my latest round of issues.

My resolve to overcome this disease is strong as ever. 

This is why I write, fundraise, and fight!

BikeMS is a rallying point; a single event for our MS community to focus our support, awareness, and fundraising.  For the rest of the year, however, MS remains a struggle in our daily lives.  For me, there are better days and there are more difficult days.  Unfortunately for me, ‘more difficult days’ have been the prevailing norm for the last few years.  My response is to fight, and I will continue to fight until we finally live in a world free of MS.

25 years ago I was taught a lesson that reigns true today more than ever, that the “Want To” needed for a fight is not about winning… that’s the end objective.  Having “Want To” is about absolutely everything that’s required before we win; to endure and persevere in the face of unyielding opposition.  The message of “Want To” is about truly living my mantra of Never Stop… Never Quit…  My “Want To” involves raising the money needed for research and support.

In 2010, I was asked to write a blog story for the Department of Veterans Affairs’ MS Center of Excellence.  Four years later, that blog site, along with NeverStopNeverQuit, are continued sources of motivation and strength for me, as well as many others living with MS.  It’s one of many outlets to fight.  For my family and me, writing down my thoughts, hopes, and fears helps us understand and focus on what matters.  I’m assured when I am told my words help others in this fight.  No one should ever have to feel alone; fighting MS is tough enough.  Your donations help ensure that no one ever has to fight MS alone.

In 11 years, Brie and I raised nearly $176,000 in our fight against MS.  For 2014, our goal is at least $43,000.  The money we continue to raise goes to funding that next research grant and so far beyond.  Standard MS-related costs include:

• $50 -  Round-trip taxi ride to medical appointment
• $100 - Walker or Shower Chair
• $250 - Transport Chair; Round-trip wheelchair ride to medical appointment or Portable Ramp
• $500 - Help fund a college scholarship for a high school senior with MS or 24 hours of Respite Services for a caregiver
• $1,000 - Hospital Bed; 1/2 of a standard chair lift; utility or rental assistance to two members\
• $43,000 - Funds that research grant (average cost)

For MS patients, the average annual cost of treatment drugs is $30,000; 20 – 30% of that cost is often not covered by insurance.  No one should ever have costs limit their treatment options; fighting MS is tough enough.

What’s next?

The future of my MS is unknown.  Regardless of this clinical trial’s success, my resolution is firm.  I will continue to ride, write, fundraise, and fight.  With my family and friends supporting me, I will continue to fight and prepare my body and spirit for whatever happens next.  I will support all my other friends fighting this disease so they are never alone and I will fight for the research that will lead to the day when no other person ever has to hear the words, “You have MS”. 

That’s what $43,000 means to me!

For more than 2.3 million people worldwide, every day is a fight.  This fight is not over until a cure if found.

It will never stop….nor will we

It will never quit….nor will we

This is why we fight!

Please support our fight by donating today: http://main.nationalmssociety.org/goto/EMBK

Want To

2014’s BikeMS is just two days away; everything is coming together for Team Amulet!  33 team riders are preparing.  Out of town teammates have started to arrive while locals are putting final touches on their bikes, gear, and packing lists.  Tomorrow, we will begin to assemble down in Monmouth, OR to join with the MS Society staff and hundreds of other riders.  From that point until Sunday afternoon our only focus will be to ride, rest, and celebrate our collective efforts to make multiple sclerosis a distant memory!

My 32 teammates were feverishly preparing while I spent the early morning reading. 

My source of intrigue was an academic paper, written in 1990 by John C. Bahnsen and Robert W. Cone, titled “Defining the American Warrior Leader” (Parameters, Fall 1990).  What does a paper written for the U.S. Army War College have to do with BikeMS?  Everything.

My feverish preparation was a reminder of why I ride. 

Let me explain. 

25 years ago I was a plebe at West Point.  During the summer of 1989, my classmates and I were new cadets attending “Beast Barracks”.  Beast was Army basic training, total West Point immersion, and college freshman orientation all rolled up together.  Overwhelmed is an understatement to describe how I felt!  I was one of over 1,300 plebes just trying to keep our heads above water.  Our greatest strength often came in the form of Old Grads, our alumni.  These grads survived Beast, went on to graduate, and served as officers in our military.  They often led our nation’s soldiers in combat, some fighting the toughest battles under the most demanding conditions.  It was lessons they learned at West Point that helped shape them into the leaders our nation needed them to be.  Upon calling, they returned to West Point for the purpose of passing forward those lessons and their wisdom, just as they were taught years prior.

One of my teachers in July of that year was John C. Bahnsen.

Brigadier General John C. Bahnsen (Retired), West Point Class of 1956, shared with us his ethos of “Want To”.  It is his summary of the mental readiness needed to generate inspiring leadership.  In a fight, you don’t have time to develop “Want To”, nor is there time to instill it in others.  “Want To” has to be part of your moral character.  You must be willing to maintain complete perseverance, endure challenging setbacks, and bypass more glamorous qualities.  Only then can you “compose the total makeup of the American warrior leader” that General Bahnsen and Captain Robert W. Cone (General, Retired), Class of 1979, helped define in their paper.  16 years have passed since I first read this paper, an assignment during my own Army training.  “Want To” and the American Warrior Leader are interchangeable echoes of the same message.

I only offer a taste of what General Bahnsen’s description of “Want To” was.  I would never even consider trying to replicate that message.  General Bahnsen and Captain Cone offer more clarity in their paper, but the message still escapes direct translation.  When General Bahnsen spoke to our class about the spirit, character and obligations that an officer has in our Army his intention was never for us to memorize a definition of “Want To”.  He wanted us to learn and develop our own “traits of the ideal American warrior”.

I’m 14-years separated from the US Army, medically retired after my diagnosis with Multiple Sclerosis.  What remains clear, more than the ribbons, awards, and collected memorabilia I have I storage, are the lessons I learned from thousands of soldiers I served with throughout my career.  “Want To” may be the greatest lesson of them all.

Today, after a most difficult winter, the mental readiness and inspiring leadership aspects in General Bahnsen and Captain Cone’s definition of a “warrior leader'” reign true more than ever for me.  The message was never about winning… that’s the end objective.  The message is about having the “Want To” needed to do absolutely everything that’s required before we win; to endure and persevere in the face of unyielding opposition.  The message is about truly living my mantra of Never Stop… Never Quit…

I sat in the hospital yesterday, undergoing several examinations for my latest round MS issues and reminiscing on General Bahnsen’s “Want To” speech during plebe summer.  I reached out and chatted online with several of my classmates, hoping their memories would spark more clarity and detail on the event.  None of us seemed to memorize the definition of “Want To”, but I've known these men and women for 25 years now.  I have seen them demonstrate their own unique traits of that ideal American warrior.   Just like in their examples, I realize that “Want To” remains ingrained in my spirit. 

I've experienced many challenging setbacks in my fight with MS, and I will assuredly endure more.  My willingness to maintain complete perseverance in this fight is the reason I will ride with Team Amulet again this weekend.  I’ll ride Saturday and Sunday, celebrating our collective efforts to make multiple sclerosis a distant memory.  Monday morning I’ll be back at the hospital for more testing to try and gain clarity of my new issues, hoping to halt or lessen the damage.

Riding will be my leadership and motivation, strengthening my own body and encouraging others to join us.  My stories will allow me to advocate for all of us fighting this disease, spreading awareness and putting a face on the fight with MS.  My fundraising efforts will help support the research needed to defeat MS and to help treat those like me, who are suffering from the debilitating effects.

Winning is the end objective.  My “Want To” is for the fight.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

Kevin Byrne - Portland, OR

neverstopneverquit.com