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.

Tuesday, August 30, 2016

Bike MS 2016 - One Way or Another

“Kevin, why do you fight? What’s the benefit you expect to gain from all of this?”

I don’t think I have ever had someone directly asked me that question. In the 14 years of riding and fundraising for the National Multiple Sclerosis Society, my intentions have never come into question. To some people, it must seem obvious: I fight to find a cure for my disease. To others, my efforts seem to be more altruistic and charitable: I fight to help find a cure someday, a cure for others. Many are proud of my determination and will to fight, even as my strength declines and my body weakens. Although they see my outcome as inevitable, the examples I work to set for others fighting disabilities far exceed any medical benefit my work will provide.

Where does the truth lie? It’s nowhere in the middle, not some water-downed answer that kind of meets all possibilities. My answer is simple and extreme in every direction: I Fight to Win.

I fight for a cure for me. There is nothing that I want more than to defeat my MS, a disease which has already taken so much from me yet continues to chip away at my body, my mind, and my soul. I want to take back everything I have lost. I want to never go to bed at night in fear, reflecting upon what I lost that day and wondering what piece of me will fade away tomorrow. I want to stumble upon the magic cure, my own Deuce Ex Machina, and take away 17 years of pain and loss in the blink of an eye.

That’s probably not going to happen. If it does, it probably won’t be that instant solution I’m fighting for. That’s no reason to give up, to stop fighting. Telling me I’m going to lose only makes the fight harder. When I hear “probably not" all I hear is “possibly could". As long as we possibly could, I will continue to fight.

I fight to overcome my disability. Every day, my MS worsens. Every day I stand up against that beast and fight to take back some ground. I woke up yesterday morning bright and early at 4:50, ready for another day of fighting. After dressing and brushing my teeth, I grabbed my bag to head out to the gym, as I like to be ready when the doors open. As I climbed into my car and lifted my left leg inside before closing the door, I smiled. That was the first time in three weeks I was able to pull my leg into the car unassisted. Most days, I have to grab my unresponsive limb with both hands, then lift and pull it into the cramped space. Not today. Monday morning, just after 5 o’clock, I logged my first victory of the day. Fuck you, MS. I don’t want to give you any more of my life. I want to overcome the pain you have already caused.

That victory is probably not going to happen often, at least not as often as I want. My MS is going to continue to take; my disabilities are going to continue to worsen. Constant rehabilitation efforts will help slow its progression (hopefully). Adaptive technologies will help me continue to function, by offsetting and compensating for my disabilities. I’ll use those technologies. I’ll continue to work to slow its progression. But please be rest assured, MS. I’m not satisfied just trying to compensate for my losses. I’m always fighting to take back every inch of ground you’ve stolen from me.

I fight to end this disease. The accomplishments made in the past few years far exceed anything ever realized. The NMSS details the 14 drugs currently approved for modifying the disease course of relapsing remitting multiple sclerosis, as well as three main treatments for managing relapses. There are scores of medications and medical devices developed to aid in the managing current symptoms a patient may experience, in addition to a litany of complementary & alternative medicines. That is incredible but it’s simply not enough. It’s not enough for two reasons:
  • First, there is no cure. FDA approved treatments, medications, and medical devices focus on trying to modify, slow, or manage the progression of MS. I want to find a cure; I want to end the disease.
  • Second, treatments that work for one patient won’t work for another. Treatments for Relapsing-Remitting MS (RRMS) are simply ineffective when facing Secondary-Progressive MS (SPMS), Primary-Progressive MS (PPMS), or Progressive-Relapsing MS (PRMS). The four classifications are neither distinct nor consistent in their characteristics, varying from patient to patient and day to day. Even within classifications, treatments which may work for one patient can have minimal, zero, or even harmful effects on another. I myself have experienced five separate life-threatening reactions to “approved" medications. These treatments are crucial in the treatment of MS. They have saved countless lives in restored function to even more, but they’re not the final answer. I want to find the treatments that will overcome the devastating effects of multiple sclerosis.

Even as they say this (speaking through voice recognition software to bypass the increasing disabilities in my fingers) there is no inference of doing this for me. This is for everyone fighting this disease today and every person tomorrow will have to hear those god-damn words “You Have MS".

I fight to maintain the will to fight. One of the scariest parts about my MS is that there are so many people fighting alongside me, be it my peers or my army of caretakers, yet I am so alone in this fight. It’s impossible to predict or even explain what my MS is taking from me any given moment. Most times I can’t even form those descriptions in my own mind. I can’t count how many times every day I sit quietly, sigh softly, and wonder “Just how long can you keep doing this? Just how bad will this get?" Those are the times I think of all my role models standing before me and telling me to fight. So I fight. I fight to remind myself that’s the only way I am going to experience joy, excitement, and elation. I fight to demonstrate the will to fight, for my peers and army of caretakers have the same doubts I hold close. I fight because I realize that’s the only way I will win. There is no thought of doing this in spite of my pain or to overcome my loss. Part of my fight is just to rattle my saber enough and keep me in that fight.

There are many reasons why I fight. My MS has taken a lot from me but my fight goes on because, one way or another, I will win.

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…®
* Inspiration: Blondie, “One Way or Another”, Chrysalis (US), 1978

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

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

Monday, August 15, 2016

Bike MS 2016

Many of you have already received a similar version of this.  Over the next few weeks, many more will.  In case my outreach doesn’t extend as far as I wish, I’m sharing my message here.

On August 6-7 I rode.  For the 14th consecutive year, my resolve and commitment in this fight against multiple sclerosis peaked in a glorious Bike MS weekend.  My takeaways were plentiful.  Most important, however, was the single driving message I learned so long ago: Never Stop… Never Quit…

Please review this event report, covering some of my most precious highlights.  Afterward, please consider a strong donation of support for my 2016 fundraising efforts:

After final preparations on Friday, I trekked down to Monmouth, OR to greet the arriving members of Team Amulet. 25 riders joined Brie, Eleanor, and me this year on our team.  Though a bit smaller than some past years, the mix still blended every aspect of our lives: friends, family, neighbors, co-workers (both old and new), as well as new found connections. After site set-up and some short Friday celebrations, I settled for the night in preparation of a long day Saturday.

I Rode
Definitely the most important claim to stake was the fact that I pushed, dragged, and cursed my failing body out on Saturday morning to tackle the course.  I had more than my fair share of support getting me out, from my fellow rider helping me wrap a bike glove over my cramped and knotted left hand, to Brie strapping my bike shoes, to the group of fellow riders helping me ease my body down into my recumbent trike.  It’s humbling to need such support for basic tasks, but he fact that I never even have to ask is a most amazing thing.  My friends know my limitations, even better than I do or will admit, and they are there waiting to help…

I lifted my leg to lock my shoe into its clip, effectively strapping down a limb that provides little pedal power these days.  I finally felt ‘at home’.  There are few places my body feels completely at ease these days, but this is one.  The only close comparison I can share is that elation I felt every time I climbed into a helicopter seat (way back when).  Just being there make everything better; pain, cramping, numbness, and tingling symptoms, normally ever-present, seem to drift away when I ease into my trike.  I know they’ll return, but just not now.  Maybe that’s one reason I enjoy these moments even more!

All my body was able do this day was the short, flat route of 18 miles.  I rode with fellow-Amulets Brie, Sue, and Tommi on the course.  Like an energetic little puppy, I’d often burst ahead a bit, then slow down to circle back and rejoin my team.  On occasion I would have grand thoughts of extending my course or tackling some hills of the longer routes. That wasn’t going to happen this year.  A few seasons ago, I rode the 100-mile ‘century route’ and tackled the 4,500’+ of elevation.  The satisfaction of 18 miles and 150’+ of elevation would have to suffice this year.  Strangely enough…it was still truly exhilarating!

Highlight #1
The greatest part of Saturday was near the end. After an incredible ride, relaxation, and celebration with our 600+ Bike MS family, we were treated to an outdoor movie showing in the early evening.  To kick off the night’s theatre, all the children in attendance gathered up front, where I read them the story of My MS and E

As I read our story, Eleanor flipped through the pages for the huddled group.  The story is kind of like memorization of West Point Plebe Knowledge by now, as I can easily recite the tale backwards and forwards on command!  That gave me the chance instead to stare into all the young faces present and relish in their wonderment.  All I could thing was “Here I am reading a story to this adorable group of children, my words echoing across the campground to the whole group in attendance.  I’m telling a story that’s a tale of my own personal fears and struggles; a story that I’ve now published for all the world to read!”  That’s a world away from anything I’ve ever experienced before.  Nothing compares to that moment.  I never expected to ever feel this level of emotion reading a simple children’s story.

Highlight #2
Sunday morning threatened to take the wind out of my sails as a building pain in my knees added to my standard array of ailments.  I wasn’t looking forward to the ‘Victory Ride’ either.  The day’s events started out with a 1-mile loop around the camp perimeter road, completed by 57 riders this year who battle MS.  The I Ride With MS stage is a thank you to all supporters, as well as a motivation to us fighting. 

Writing is easy for me, as I can hide behind my keyboard and share my emotions, thoughts, feelings, and fears. This short ride puts me out in front of everyone.  I fear the display and often considered passing on the moment.  I’m so glad I did not!

I rode with Bonnie Iglesias and Michael Braem for the loop.  If you ever need to find inspiration and motivation, look no further than Bonnie and Michael.  When I met them, some 9 years ago, neither could ride.  Walking was a chore barely experienced, yet they continue to fight.  They never let obstacles hinder the effort to gain and do more.  As we rode, I watched them.  I reminded myself over and over: if Bonnie and Michael can make such an effort to do this, I owe it to them, my family, my supporters, and me to try…to work just as hard.

Every once in a while, I need my own series of reminders as to why I fight and why I need to push further.  Bike MS reminds me that the fight is not over and it won’t be over until a cure is found.

I will do my best to put my fight into words, and share the need, value, losses, and victories of life with MS.  Your support and donations will help us find that cure.  Please support my fight.

Thank You!


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 ride…write…fight!

Never Stop… Never Quit…®

Kevin Byrne
Portland, OR

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

Wednesday, August 3, 2016

Bike MS 2016 - Holding out for a Hero

please support my fight with a donation and share my message past my reach!

I normally spend a lot of time reaching out to my army of donors and supporters. I must apologize for this year.  Typing, of all things, has become difficult.  My consolidated words end up in a forum from which they can reach the furthest.  This is why I write!

As part of my fight against multiple sclerosis, I’m riding for the 14th year with the National Multiple Sclerosis Society. This year’s ride is August 6-7 in Monmouth, OR (Bike MS: Willamette Valley 2016).

This past year has been especially challenging. For that reason, my ever-looming message is more valuable today. It’s time to ride. It’s time to move. I know what I need to do. I’m asking for your help again to make that a reality.

My body is failing
That’s no secret to people who see me every day, but the damage is indeed mounting.
Five years ago I climbed Mount Rainier. A few weeks later my body broke down once again. I struggled, but I mostly recovered.
Four years ago I rode the STP (Seattle to Portland) ride on my recumbent trike. Soon after my body failed worse; my healing was slower; my recovery less complete.
Three years ago, we left our beloved neighborhood to a one-level house in a flat part of town. The realization that stairs were not part of my daily routine became all too apparent.
Two years ago, I climbed Angel’s Rest for what I fear will be my final time, my body a shell of its prior self.
Today, with much difficulty, I can barely climb a flight of stairs. My body continues to break down, damage cuts deeper, my recoveries lessen. Will I stabilize? Will my condition worsen? How bad will it get? I don’t know.

There are no treatments currently available that can successfully fight the progression of my MS. My only salvation will come from the development of a new treatment, a treatment that will only come through funding meaningful research.

This is what I’ll do. I will aide in the development of the treatment that will save my life and, forever more, save future generations from hearing that fateful phrase, “You have MS.” Last summer’s words from Eleanor define this fight: “we raise money to Break That Spell on Daddy!”

My fight will have no expiration. I am not going to get better, maybe never but definitely not anytime soon. My MS, in fact, is going to get worse. The damage to my body will increase to the point I am restricted to a wheelchair soon or further limited in other varied factors. None of that matters. There is still a need for me to fight. More important, there are still people out there who need my motivation, my leadership, and my support as they wage their own fight. While I still have the resources and capability, I surely have the motivation to go on.

I need to raise money to fund essential research, testing, and development. 
I will be the voice needed to rally support.
I need your help and donation to spark my salvation.

Unlike the rest of my body, my words are stronger than ever. I will use them to paint the world a picture of:
  • What MS does to a body, once healthy and strong, as it unleashes its relentless assault.
  • What a body and mind experiences, as I continue to fight back.
  • The loss, and the love, family and friends experience as they watch me stumble. The joy they experience in my small victories!
  • The elation we all experience when I fight and win, whatever that win looks like down the road.

I will continue to paint that picture with my words, as I fight harder and harder. Your support donation is what I ask for in return.


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 ride…write…fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

* Inspiration: Frou Frou – Holding Out For A Hero, DreamWorks Records, 2004

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


Sunday, July 31, 2016

Bike MS 2016 - Whiskey in the Jar

It takes a village

My MS and E is a work inspired by a lifetime of support and inspiration. I’d like to thank just a few of the many who made this story a reality:

The Cast
  • E – It goes without saying, but it still must be said that Eleanor is truly my inspiration. She is the reason I fight so hard. She teaches me new lessons every day, reminders of why I need to fight. My Little Love
  • Mama – Brie plays a lot of roles in our lives, always steering, carrying, and providing the essential support needed when life goes awry. My life… My love…
  • a colonel – Colonel Terry Walters, U. S. Army (Retired), West Point Class of 1980.  Doctor Walters made quite an impression on me back in September of 1999. Her accomplishments don’t quite receive the justice they deserve when I try to share my gratitude in my stories but, trust me, I am forever in debt!
  • this bride and that groom – Leah and Ryan Goudie. Thank you for setting the stage and creating magic to last a lifetime. Congratulations!
  • the Irish band – The Haggis Brothers ( From the moment they started until the wedding tunes ceased, all E wanted to do was twirl! Inspiration personified.
  • GO ARMY! – Captain Tyler Hash, U.S. Army, West Point Class of 2012. When I first wrote the story, Eleanor refused to read it with me unless there were pictures. While flipping through some Go Army! Beat Navy! shots she fell in love with this picture of then-Cadet Hash. I haven’t quite had the heart to tell her that he is engaged… Beef Gravy, Ty!

The Support – as much as I might like to pretend I made this happen by myself, the artistic and technical expertise supporting this effort truly brought My MS and E to life. Thank you! If you have professional requirements in these areas, look no further:
  • Illustration and Layout – Nate Jensen. Ellie twirling across the cover of the book says it all. What an outstanding artist!
  • Editing – Michael J. Haas. Reigning in my content and context is definitely one monumental challenge. Editing my meter and rhyme in a children’s story was quite the herculean task. Mike, I apologize for making you read those first few drafts!
  • Publishing – BookLocker.  Publishing your first book is hard. Your first children’s picture book?...for minimal cost as a non-profit venture?…expecting national/global outreach? Well, if that’s what you expect then you’d better just stop looking. Email Angela. Nate and Mike made my story sellable, Angela made it a book!
  • Final Layout – Gwen Gades. Final polishing of our work, now ready for press!
  • Plus, the Army of proofreaders, content editors, and reviewers who tweak the final product.

It takes a village, indeed! Thank you all so much for making this dream a reality.

It’s easy to create a story when you have already watched it play out before your eyes as I did that weekend. My favorite aspect of the book is the fact that, quite simply, every bit of this tale is real. The conversations E and I have. Her energy and excitement over all things she comes in contact with. Twirling. It was her twirling at the wedding which inspired my words. While watching Ellie dance, as I was trying to enjoy this a moment or two, I snapped this photo:

I watched in amazement as she twirled and she twirled and she twirled and she twirled, like there’s no other need for this girl! For the entire wedding, the trip home, and most of the month afterwards, it seemed like all she could talk about was “twirling”. Viola, the story that wrote itself!

I do have to give non sequitur credit to one more inspiration. Metallica, a long time source of motivation for me, is the final piece for My MS and E. Like this year, the inspiration for all my blogs in 2015 came on the music I chose for my ride. Unlike this year, my music selection was the music I use to exploit the raw energy and motivation feeling my emotions ( When The Haggis Brothers broke out into a fine Irish version of “Whiskey in the Jar”, I had my theme. Watching Eleanor twirl just forced the rhyme.

The hard part as just begun: marketing the book, selling as many copies as possible in support of my fight, and fighting. Whenever my mind wanders to the fear of what will still come in this fight against MS, all have to do is reflect on the book that my daughter and I wrote together:

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…®

* Inspiration: The Dubliners - Whiskey in the Jar, Major Minor Records, 1967

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