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