Thursday, September 29, 2016

Bike MS 2016 - Last Dance

Donations for 2016 can still be made through September 30

Over this past year, MS has ravaged my body, my mind, and my spirit. What comes next is a mystery. Before taking these next unfamiliar steps, into a world without clarity, let’s dance the last dance…
2016 Bike MS wraps up today, the final day for donations. Our final fundraising totals will range somewhere close to $58,000 (our total under Eleanor) and $86,000 (Team Amulet total). Absolutely incredible numbers, but that’s just the first success story I have to share this year. Fundraising since 2003, Team Amulet’s lifetime total blew past $500,000! Once settled, our final numbers will be close to $540,000. All of those numbers are an incredible representation of the love and support we see constantly. Thank you.
My fundraising theme this year centered on our daughter, Eleanor. My stories were an attempt to describe the love, dedication, and devotion my little love has for her daddy. The music and motivation were a collection of songs handpicked by Ellie, capturing her incredible spirit. My MS and E was written to paint a picture of a typical interaction we had, themed around living with multiple sclerosis but more importantly life with Eleanor. By sharing these with you I hope you gained some understanding of just how important E is to the strength of our family. This six-year-old girl understands concepts I can barely grasp at 44. Part of me wishes she never had to face these obstacles. All of me is comforted by knowing she is forever there, supporting her dad.
Today, my thanks go out to the 23 wonderful members of 2016’s Team Amulet, the hundreds of donors funding our fight, and the hundreds (if not thousands) more supporting us every step of the way! My final task for this year will be putting together and sending out our Bike MS thank you (a favorite “chore” every year). Afterwards, I will file away the year alongside memories of the last 13 as Team Amulet. I call upon these memories so often throughout the year, to comfort and motivate me in darker days. Thank you!
Winter is Coming
All too often in the past, the highs reached when coming out of Bike MS were short lived. New setbacks were often just around the corner. Relapses, hospitalizations, and an array of challenges seemed to surface just as the leaves started to change and the season turned. This year was different. My world crashed well in advance of this anticipated schedule. In truth, I never fully surfaced after my last few struggles. I went out on disability from my job, once again, a few weeks ago. My prognosis is unknown, but there is no prediction on my future just yet. The symptoms of my MS continue to worsen. With no forecast of relief for me, nor any strong treatment options, anything we try to alter this course will be, as one of my providers describes, “radical and off label”.
Radical and Off Label needs to be my new motto. Almost everything i see as defining me over these past 17 years is changing, much like it did shortly after my diagnosis in September of 1999. I hope my reflections on the successes and mistakes of the last change will make this round a bit smoother, but I’m trapped in a world of “I don’t know”. I don’t know exactly what the next changes will look like. I don’t know what I will find. I don’t know what else I will lose. The difference this time around is this: I am willing to let go of absolutely anything I need to, anything holding me back from the comfort I need. To put that in a more positive light, I am prepared to embrace a new world. One comfort I have again this time is knowing one thing won’t change: the love of my family and friends.
My job is to remember this change and this constant.
Reduce Reuse Recycle
As a step away from 2016’s Bike MS, I start fresh. My therapies, treatments, and rehab will focus on stemming the tide on my progression. My efforts will be to take back what I’ve lost. For a while, at least, I will not write about it. I’ve lost the taste of writing about my struggles and losses. Maybe not forever, but my stories of this fight against MS are on hold. My MS has already taken so much from me. I don’t want to give it any more than I have to. I don’t want to give it to my voice. In my mind, I have untold stories needing to come to life. In my folders, I have half-written books in need of attention. They will be the focus of my voice.
For me, the year cycles around Bike MS season. Today is my New Year’s Eve. Today is a time to celebrate the love and wonderment of the year. It’s also a time reflect on the pain and loss I have lived. Resolutions are often made in anticipation of a prosperous new year. 2016 is no exception.
Before the ball drops, however, there must be time to enjoy our last dance tonight.

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!

Never Stop… Never Quit…®

Kevin Byrne
Portland, OR
* Inspiration: Donna Summer - Last Dance, Casablanca, 1978

For the full selection of Ellie's 2016 BikeMS mix, go to:
 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

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