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.

Monday, September 12, 2016

Bike MS 2016 - Fight Song

This isn’t working; you need a new plan.
I truly pains me when I have a story to tell; a tale so profound that I’m sure will touch the hearts, minds, and emotions of my readers, but the words I need to form don’t make it onto the page. The little critic perched upon my shoulder won’t let me get away with more commonplace banter, a mere sequel to my last blog post… and the one before that… and the one before that…

My body is failing.
                They know that already, Kevin.
My MS is worsening.
                Again, they know that.
I wonder just how far my body will take me in this fight.
                Your boring your readers, Kevin, and boring this little voice in your head.
I’m not sure how I’m supposed to write the toughest post I’ve created to date. Do I just come straight out and say it? Do I tell the world that my body is no longer able to stand up to the rigors of what I consider a normal life? I’m 44 years old, and for the second time in my life I am starting down the path of disability and retirement. What comes next is unknown. What my life looks like in a year (personally, my professional life, my healthcare, what I am able to do, where I’m able to go) will all radically change. Do I write how hard it is to remain positive when faced with the concept of losing all of the “things” I’ve used to define myself as a man?
                That’s a start, Kevin. Why don’t you go with that?

The little voice in my head is normally my origin of inspiring words and ideas. When Voice tells me…I’ll just call him Voice. Giving him a real name might lend legitimacy to the fears I’m losing my mind as well as my body. When Voice tells me my words are stale and that a change is needed, a change is probably long overdue.

Yes, changes are long overdue. That simple statement summarizes my fight. My objectives remain the same: to cure my MS, to overcome my disability, to end this disease, to maintain the will to fight (in all of us). I don’t know any more if they are true objectives, or merely short-sighted goals.

The methods I’ve employed need to change as well. Accomplishments once deemed essential have been lost or compromised. The resources available to me today are vastly different from ones I’ve held onto for far too long. The bottom line is I’m fighting and running in the wrong directions. My tactics, how I employ my resources on the ground I’ve chosen as my battlefield, are wholly ineffective.

Just how dire is my situation? I’ve come face-to-face again with disability and retirement. My body is shutting down. More to the point, the left half my body is failing. Just a few years ago, I climbed mountains, biked long distances, and lived a productive life despite continuing to battle my MS. My condition now is a vicious cycle of cause and effect. I’m unable to move and exercise at a level necessary for maintenance of my body. The rippling effect of this reduction in use is atrophy up and down my left side, eroding my muscles and making simple tasks more difficult. The tasks I can do are all difficult. This weakened state further decreases how much I move and exercise, continuing the loop over and over. In just a few years, I have lost the symmetrical development of my frame. At this point, the losses are compounding exponentially.

This is relatively new to me; others have seen this for a while. Their devotion and support for me kept their concerns silent:
·         “He’ll figure it out. He needs to get there on his own.”
·         “I don’t know the best way forward. We’ll figure it out together.”
·         “It’s sad to watch him struggle. I wish there was something I can do.”
·         “Wow, I can’t even imagine.”
All those thoughts are real; all of those concerns are extremely valid. I’ve held every one of those thoughts, and so many more, watching all of my friends who fight this disease alongside me.

As I pull out my <proverbial> blank sheet of paper to begin the process of sketching what life looks like and where I want to be, I start at the end.

My Goal: what do I ultimately want?
My Strategies: what are the objectives I need to accomplish in order to meet my goal?
My Tactics: what are my current resources & constraints, how do I need to use them best, and how does that need to change?
What I Fight For?  Why?

Through input and support from every channel in my life (family, friends, coworkers, doctors, therapists, clergy, and so on) I have been able to vision my goal in all of this: I want to be happy. Regardless of the course in my life, I want to be happy. I want to feel satisfaction over the efforts I expend and reap the bounties which fall upon me; I want to continually reinforce the goal to make me happy.
                That’s good, Kevin.
                Your goal is to be happy.
                What makes you happy?

There are countless things that make me happy in my life, or could make me happy if realized. Conversely, there are countless tenets which can or do take away my happiness. I’ll keep this rant short, only focusing on how I can find happiness in this world of multiple sclerosis. I’ll take this verbatim from my earlier statement. My objectives remain the same: to cure my MS, to overcome my disability, to end this disease, to maintain the will to fight (in all of us). Those are the objectives, the strategies, I need to achieve in order to find happiness. My focus remains on all objectives. The timing of their individual successes, however, will vary as much as the levels I will finally realize in each.
                That’s good, Kevin.
                Expand on that more.

This point right here is where I battle myself every day. How much success is enough? How many victories, how much ground gained, in this fight against MS will make me happy? Is holding off decay, delaying the inevitable, enough? The reminder I must share and convince myself every day is that nothing but absolute success in each and every one of my objectives will ever be enough. The reminder I must share and convince myself every day is that every victory, every ground gained, will make me happy.

This brings me back to tactics. What resources do I have available to me? What do I need to focus on, to exploit my strengths, reinforce my weaknesses and compensate for that which I have lost? What additional resources are out there already? What else is under development? What is already lost?

Today is Day #1.

Everything I have done up to this point has prepared me for this next phase in my life. I know what I want to do. I need to figure out how to do it.

Disability is only a small piece of my puzzle. For the countless time I look to the future, to start my life anew. I’ve got a leg up on this round, however. With so many in my life supporting, assisting, and carrying me, I start this round with so much more clarity than ever before. With my objectives in mind, I’ll hone my tactics and employ the necessary resources to achieve them.

There’s one thing I am sure of. My Voice will be different. I will find my Voice, and I will use it to find my fight.

I’ve still got a lot of fight left in me.
                Go get ‘em, Kevin!
My heartfelt thanks goes out to Eleanor, the inspiration for that little Voice in my head:

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: Rachel Platten - Fight Song, Columbia Records, 2014

For the full selection of Ellie's 2016 BikeMS mix, go to:

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.