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” (   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:

Kevin Byrne - Portland, OR

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

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