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
