Thursday, August 27, 2015

Bike MS 2015 - Extraordinary Efforts

Life always seemed easy.  I never felt as if my lofty goals and dreams were unusually difficult to achieve.
I’ll pause here for all challenges and questions.  My life, education, careers, and family are all indeed wonderful realizations of those goals and dreams.  I just don’t consider them overly difficult.

Success wasn’t necessarily a given result, of course.  Hard work and a dedicated focus remained crucial in order to realize those goals and dreams.  All my efforts just never seemed difficult; it certainly never seemed beyond my reach.

Life was easy for one simple reason.  My definition of “difficult” was skewed.  The work and focus applied were not extraordinary efforts.  Instead, they were realistic expectations put in place to succeed with these lofty goals.  “Difficult” to me meant something that was beyond an expectation of success.  Throughout my life I was guided and supported by incredible family members, mentors, teachers, and peers.  They led me down a path where they could see my ultimate success, even if my own understanding was not yet developed enough to realize this on my own.  That’s not difficulty, but rather the reality I was shaped with.

My greatest achievement was merely trusting and following the paths so many others marked for me, helped me see, and celebrated with me when I reached each goal.  My greatest failures would be the times I ignored those lessons, instead feeling that some dreams were difficult.  Those were times I dropped a goal, discounting the perceived value it once held only to move on to a new dream.  It wasn’t coincidence my options always included strong paths ahead; it was always the support of all of my loved ones.

Over the past few months I have seen a glimpse into true difficulty.  Difficulty that is indeed beyond an expectation of success.  Last week I met it face to face when Brie and I met with one of my neurologists to talk about my next steps in treatment.  The past few years were marked by a steady and noticeable decline in my strength, function, and a host of usual-MS symptoms.  We’ve seen it going on for some time.  Now that my 2-year clinical trial is drawing to a close we wanted to know what to expect.  We wanted to know how to fight back with success.

There is nothing on the horizon that could be considered an expected course for Secondary Progressive MS.  I’m left with general tracks; three paths that the statistical majority of patients follow.
  • My disease progression will continue to get worse, or
  • My disease progression will stop worsening at some point, or
  • My disease progression will additionally revert to the sporadic relapses experienced in the past.

The other options include all of the above, at times, or none of the above.  There are no viable approved treatments.  There other experimental trials out there, though none are enrolling at this time.  Any new trial adds the risk that, even if the experimental drug shows positive results, there is only a 50/50 chance I would receive it.  I understand the scientific nature of experimental treatments, and a need for ‘control’ groups, but facing a future with neither plan nor progress is... 

This future is indeed many things.  Most of all, this is difficult.  How do we plan a future?  How do we live the experiences for us and for Ellie that need my full physical participation?  I know there are alternate accommodations we can always make, but what if I am not ready to give up these paths for alternates?  My family needs me to adapt, but when and how far?  I’ve adjusted so much already.  If the time comes, I’m sure I will adjust as much as I have to, but do I have to blindly accept that?  In the past, if I really wanted something, hard work and a dedicated focus would assure success.  Last week I saw a healthy, active future as something I could not expect even with the most diligent work and dedication.  For the first time ever, I saw something I still deeply yearned for as “difficult.”

OK, that’s new.  Now what?  Incredible family members, mentors, teachers, and peers are still here.  They are still ready to guide and support me.

As my doctor reviewed the medical literature and my history, I could see his emotion build.  Almost angry at times, this globally renowned MS-specialized neurologist vowed to pursue every option, including pulling me from false paths and exploring unproven options together.

All the time, Brie sat quietly and listened.  Only when the time was right would she step in, to review treatment options learned from her own research or dig deeper into options she knew could be on the table.  Their sometimes-heated assessments of existing and potential MS treatments were quite amusing to watch.  We’ve talked on our own, as well as with therapists to help us remain strong for the fight that lies ahead.

Among our hundreds and hundreds of supporters of our Bike MS campaign, one message stood out during this pivotal week in my life.  Bob Foley is more than a supporter.  The retired 3-star general was my Commandant at West Point and the inspiration for our Never Stop…Never Quit… mantra.  Once again, his words of strength and support struck me with awe.  In part, he wrote:
Keep fighting and keep writing.  Your journey has created a legacy a legacy that will benefit others for years to come.
When a legend writes about your legacy, you pay attention.

On Thursday, our local friends and supporters gathered at Journeys Pub for our 7th annual Wine, Beer & Bike MS fundraising event.  It is impossible to describe my emotions surfacing as the evening unfolded.  Months and months of hard work, even before last year’s event ended, from our volunteers brought together an amazing array of raffle items from a slew of incredible donors.  Journeys hosted the entire event and rallied generous supporters from across Portland!  Every person volunteering, donating, and supporting echoed the same message to me.  They wanted me to keep fighting.

None of these incredible people are the least bit disappointed in me when I use my cane, have to wear a brace, or stop moving when my body has reached its limit.  They won’t be disappointed if I am in a wheelchair next month, use a walker next year, or stop other activities if my body no longer has those limits.   They all can see an ultimate success, even if my own understanding is not yet developed enough to see this on my own. 

But they do want me to fight, and to fight as much as I can until we win.  So that is what I will do.  My schedule is filled with appointments to assess my current state and develop those next steps.  Brie and I spend much of our time with doctors, physical therapists, and counselors to help develop my physical and our emotional roadmap.  If this isn’t working we will pursue every option and potential.

All the time I will keep fighting and keep writing.  I am not quite comfortable with the term legacy, but I welcome the hard work and dedicated focus I’m prepared to give to achieve those lofty goals.

With your support, maybe this won’t be so difficult after all.

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!

Kevin Byrne - Portland, OR


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