This isn’t working; you need a new plan.
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: https://youtu.be/3RHbNjwUTeQ
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: https://open.spotify.com/user/22cq6yaewkxyysepfxm5pb7hy/playlist/0JxHvtzx2weHhcqVLagbOc
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