Thursday, October 29, 2015

Bike MS 2015 – Sometimes I Win

For the last 16 years, my fight with Multiple Sclerosis has been a progression anyone familiar with this disease could expect: relentless rounds of pain, setbacks, and increasing debilitation.  Loss has become a fact of life.  Realization of that constant loss can be enough to break any person’s confidence and will, tapping all strength remaining.  As I face losing more and more, support from my friends and family is often my only saving grace.
But sometimes I win.

Even before I started to ponder how I’d close out this Bike MS season, I noticed some wins.  During dark rounds of loss, small wins overshadow everything else.  They are my own little Cinderella Stories, pounding a relentless theme over and over: Never Stop… Never Quit…

This is a story about those wins.  Let’s start at the end.

We Raised a Lot Of Money
For 2015 Bike MS fundraising, Team Amulet set an all-time record by raising $102,543 in support of the National MS Society’s dedication towards achieving a world free of MS.  For her part, Eleanor raised $62,422.  Brie and I proudly support our daughter’s desire to, in her own eloquent words, “break that spell.”

Along with many other valuable efforts, these dollars will help fund research.  For me, research holds the key to breaking that spell of pain, setback, and debilitation.  Until that day arrives, I will continue to fight and relish every win.

Our Fight Inspired My Words
In April 2010, I submitted my first blog to the Veterans Administration’s Multiple Sclerosis Centers of Excellence.  Writing, a hobby for many years, is my way to have a strong voice when I share my message in this fight.  This year, I realized it is a passion.  I always look towards drafting that next blog story, curious of what I may think and write.  In rare moments of free time, I’m also working on writing several fictional stories. 

All the while, final preparations for my first publication are underway.  My MS and E is a children’s picture story that depicts the relationship Eleanor and I share, because of my MS but also in spite of it.  It is written with the spirit of our mantra of Never Stop… Never Quit…  Not only do I get to tell stories, but 100% of the proceeds I earn from this adventure will directly support our fight!

I’ve Overshadowed Increasing Debilitation
After an extensive progress evaluation with the Department of Veterans Affairs I am now, mathematically, about three times more disabled than when I was last evaluated in 2000.  The consult of how easy I can increase my benefit rating another 30-40% wasn’t as comforting as I am sure it was intended. 

My 2-year clinical trial is drawing to a close and I again face my doctors’ uncomfortable resolutions that “when the trial completes, we’ll try something.”  I’ll surely do whatever is needed, though my track record on tolerating new treatments has been poor.  My physical therapist also shared that “we’ll try something” commitment, but offered little hope for muscles that just don’t have nerve signals in them anymore.  Last month, I arrived home loaded with new devices, more appointments, and a full schedule of physical therapies; all ventures in the hope is that something will stick. 

“Something” indeed stuck a week later when I moved the toes on my left foot.  We’re not running any marathons (yet) but, with a little prep and a lot of focus, I can wiggle my toes!  That control is a sign that there is still life, some remaining signals, and a hope for more wins to come.  Today was my first, of many more to come, consult with the VA’s Complex Brae Clinic.  Something is out there, waiting for me to find it.

I’ve Experienced Searing Pain
Persevering through mobility and dexterity issues, I find myself desperately trying to maintain normal levels of activity.  Recently, while reaching into our oven to pull a tray from under the broiler, I immediately pulled my arm back.  That startled reflex was from searing pain in the tip of my finger, just barely unprotected by a towel.  I spent 20 minutes soaking and icing my finger in my attempt to arrest the pain, hoping the burn wasn’t too bad.  All the while, my face wore the widest grin in quite some time. 

I’ve inflicted a lot of damage to my right hand and fingers over 16 years, mainly because I don’t  pain or sensation.  My function is strong, there’s just little sensation.  Pain is a sign that there is still life; a hope for more to come after this win.

Never Stop… Never Quit…™
Retired Lieutenant General Robert Foley, West Point Class of 1963, sent me powerful words of support this year.
Keep fighting and keep writing. Your journey has created a legacy that will benefit others for years to come.
When a legend talks about creating of a legacy, I can’t hide my feeling of pride and hope for our fight.  Many years ago, it was his stories that became my inspiration (Prologue).  That inspiration became our mantra.  That mantra is now our brand!

Soon after fundraising ended, we held our first formal meeting. To further unite under the Never Stop… Never Quit…, sharing that common theme throughout our events.  This pending trademark will help us expand that legacy.

We Raised a Lot of Money
Our 2015 Bike MS fundraising officially in the books.  Incredible numbers define what this fight means to me.
$102,543 and $62,422

First look at our numbers elicits two incredible responses: “that is incredible” and “how much are we going to do next year?”  Such reactions epitomize our fight against MS.  The hard work and dedication that goes into rallying this level of support is incredible.  Such great efforts from Eleanor, Brie, and all of Team Amulet never cease to amaze me. 

Over 375 donors and supporters combined to help Ellie, Brie, and me reach our highest mark yet.  Support truly came from every imaginable source:
·         Family, friends, classmates, co-workers…all dear friends. 
·         Across 28 states and four continents.
·         Some, I have yet to meet (having read about my fight before reaching out to support). 
·         Others, I have been friends with all of my life! 
All, dear friends whom I owe so much for the chance I am given.  Just as inspiring are the efforts from all teams, participants, and countless event supporters, helping raise $762,321 this year alone. 

Every single effort made a difference.  You all made impact with dollars, support of our many events, needed reassurance, and motivation to keep fighting.  These dollars will help fund research needed to save my life, but the final thought still prevails…next year.  We have come so far but we are not there, YET.

I reach out often, through every available venues, and ask for a lot.  You answered; your donations and support went beyond my wildest imagination; your generosity is a big part of why I still have a chance! 

So I will spend some time reaching out again, through every available venue.  This is time to share my thanks and describe what your support means for my family and me.  Before I had to face my MS, I was a proud, strong, confident man.  Now, as a face some of my darkest days yet, I am a proud, strong, confident man who continues to reach higher-than-ever levels.  Our fight, our brand, and all of our wins will truly create a legacy that will benefit others for years to come. 

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!

I owe this all to you.
Thank you for your support!

Never Stop…Never Quit…™

Kevin Byrne - Portland, OR