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.
THANK YOU, ALL!
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!
Love,
Kevin
Never
Stop…Never Quit…™
Kevin Byrne - Portland, OR
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