Friday, July 31, 2015

Bike MS 2015 - Fuel (the ride, part I)

My Dear Donors and Supporters,

Much of my free time is spent planning, writing, and fundraising for our fight against MS.  Unfortunately, there never seems to be enough time to finish all work I start.  Of the many duties I am short on this year, most important is the responsibility to thank my supporters of our fight.  I need to pause and take a moment for that now.

First and foremost, thank you.  While searching for ways to better define my thanks in words, I read back through recent articles on managing my MS (after 16 years, my desire for guidance and ideas remains strong).  I came across this gem:
Set Priorities
Nothing is more exhausting than a to-do list filled only with things you “should” do. That’s especially true for those with MS, who need to conserve their limited energy. Instead of saying “yes” without thinking, start with “no.” Make a daily activity log, and prioritize items into those you must do, those you'd like to do and those that would be nice to do if you have the time and energy. Focus on the higher priority items -- those that are truly important to you. When possible, enlist the help of others when tackling that to-do list. ^1

So much is there in only one paragraph; it’s hard to select a single reaction over all others.  I’m torn between two, from the echoes of my friends and loved ones who will chuckle at this note and say, “I’ve been telling you that all along,” to the nagging voice in the back of my head insisting “there is no way in hell I will start with ‘no’.  I’m bred to say ‘yes’ without thinking and I have no intention of backing off.”  An ideal choice must be to work with something in between those two.

Jumping headstrong into a bounty of projects and efforts, I usually run out of time and energy well before I satisfy my list, yet I’ll readily commit to adding more without thought.  Here is where I have an army to offset my limitations.  My support spans from Brie and Ellie, my loves and energy; to our terrific team captains, Tommi, Sue, and Matt; to our wine & beer fundraising champions of Michelle, Tom, Shannon, Bob, and Tim; and finally the never-ending list of loving outreach I receive every day from you, my family of donors and supporters.

I’ll often commit to fundraising efforts hoping, or knowing, someone will help me cross the finish line.  Still, there are some areas I must hold tight and see through myself.  Those areas contain my gratitude and dedication.

Your support and donations fuel the only option I have for a healthier, active future: research.  Current treatments are not holding my disease at bay.  Maybe, at best, those efforts are slowing further progression of my MS.  I’m not ready to have the term “it could be worse” satisfy my hunger to find a cure, my desire to resume my old activities, or my wishes to explore a wealth of new adventures with Brie and Eleanor.

After 13 years of fundraising in support of our fight, your support continues to define the mantra fueling our every step: Never Stop… Never Quit…

I can think of three ways to share my thanks; three efforts I will never push off for others to complete without me.

I Ride
Tomorrow, for the 13th year, Team Amulet rides!  With temperatures forecasted around 99 on Saturday, I’m not sure what my body will have in it.  I’m planning on 64-miles; I would love to do 81; I hope I can do 33.  It’s hard to watch my physical abilities fade so quickly but one saving grace remains.  Whenever I finally cross the finish line, at whatever distance I was able to ride, I will have left nothing in my reserve.  Saturday is for boasting about what I can do (thanks my incredible treatment and support), just how far I can go (giving 100%), and what I have to look forward to when we do find the treatments or cure I need. 

Tomorrow, and every chance possible until we find the cure, I ride.

I Write
My MS created a need for me to talk and vent on my fears, hopes, losses, and optimism.  Eleanor, and the Portland Veterans Administration teamed up in the most unusual manner throughout 2009 and ’10.  They provided me a constant audience for my stories.  For sharing this load, surely Brie remains in their debt for many years to come!

That strange trio sparked a love for writing within me before my legs and arms started to fail, not as compensation for these issues.  As a result, my words share my emotions rather than comfort them.  Writing is one of the few activities never hindered by my disabilities.  Through the ebbs and flows of my struggles, words are one constant outlet for my energy. 

My heart overflows with gratitude for all my readers who support me with their encouragement.  Since starting with the VA on 4/15/10, this will be my 52nd blog.  My journal to Eleanor, My Little Love, already holds over 2,200 pages of her Daddy’s life.  My first attempt at a novel will hopefully be drafted in full, ready to edit, by the end of the year.  There may be another future for me when I retire yet again someday!

I’ll Never Stop… Never Quit
At the risk of standing on this soapbox far too long, I must share again the reason why I do everything to support our fight.  I’ve already written this countless times but the message reigns true. 

Why it this weekend so vital?

It is a fight. For approximately 2.3 million people with MS worldwide, 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.

Thank you again for your incredible support.  I welcome everyone to join me on this journey; together we will see this fight through!


* Inspiration: Metallica, “Fuel”, Elektra, 1998

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