Within me lies a ceaseless current that fiercely
drifts between the unpredictable seas of desperate contentment and
self-resolve. It’s a tumultuous tide that finds a constant tension between
passionately wanting and expecting more of myself and gratefully embracing all
that I have. A strong current is rooted in a reality that lies just beyond sight
at water’s edge – a devastating cliff silently existing beyond my view. I am
sailing amidst the dark in unknown and unpredictable waters, always cautious of
becoming too comfortable with life, as I know the course of life can quickly
change.
A Restless Current
The salty seas of CF are steady right now. This
past Friday at my CF appointment I blew a FEV1 of 50% (lung function). My last
three lung function tests in the last five months have all been within a percent
or so of each other. The resounding theme of such a number being the word
“stability.” I’d be lying if there wasn’t an underlying current of
disappointment. I know, it’s unfounded and ridiculous. So, you must be
wondering the reason for such a restless current of disappointment? Shouldn’t I
be relishing in the waves of life’s present stability? I should, and there is
an undeniable part of myself that truly does cherish these beautiful moments of
stability.
But, I crave progress and gain as I feel it
distances me from the realities of CF. It makes the existence of CF in my life
less harsh and painful. In every quiet moment of stability I feel as if I’m
further being pushed out into open water – more exposed and vulnerable. Maybe
it’s because I have seen and felt how quickly the unforgiving storms of life
can rage - engulfing me in its crippling powerful wake. Maybe it’s because I’ve
tirelessly fought for every breath of stability - always consumed not with the
question of “if” but “when” another storm will overwhelm me. Maybe it’s because
I’ve seen the price I and those I love have had to pay and the changes we’ve
all had to endure just to cling to stability - always seeing the reflection of
my own disappointment in their faces when I am not able to tell them of
any gain. Maybe it’s because within this time of stability I realize more and more
what can all be lost.
Along this journey, harbored deep within me is also
a constant guilt. I recognize how incredibly lucky I am - always
knowing I could be sailing a very different sea of CF right now. How can I be
so wholly grateful for every beautiful breath while still wanting
more - desperate for any sort of positive progress? I know there are
so many people with CF that would do anything for such stability and 50%.
I want calm seas and more beautiful breaths for all of us.
Change
The past year has come with great self-reflection
and many life changes. An ever-present desperation to live fully in every
moment was working against me. For most of my life I ignored my tired body,
constantly pushing harder to try and distance myself from the progressing
undeniable realities of CF in my life. As a storm of CF would rage, I’d batten
down the hatch and sail myself unknowingly further into the storm, thinking
ultimately I would sail through the tumult of CF. But I never fully sailed
through, I just steadied the boat – always knowing the seas below me were
waiting for the right winds to catch me off guard. And with unforgiving force
they did, threatening to quickly capsize me and plummet me into the powerful
stormy seas of CF.
But I continued sailing – my fervent sight always
set upon the horizon and calm waters. Some difficult decisions were made that
January of 2015 and little did I know more would only follow. Those months were
incredibly difficult but these days of stability are filled with their own
unique struggles. Even within this stability are brutal reminders of the
progressive and unrelenting disease of CF within my body. But the most
difficult thing that challenges me? Protecting me from myself. I’m constantly
trying to restrain myself from easily falling back into the deep seeded belief
that I am invincible and unbreakable. I’m constantly striving to keep this ship
balanced upon the unfair waters of CF that lie below. To get to this point
of stability, it has taken great work and dedication. I know it’s this
cautious self-awareness and this strict self-discipline that have allowed these
steady tides of stability. I know I will never out-sail CF, but I can do my
best to weather each current that I’m graciously given.
Stay the Course
I’m learning to embrace this stability while always charting my journey
upon an endless hope and contentment. I must not misinterpret lifeless
stagnancy for stability. After all, my life is anything but lifeless. Each
beautiful breath is filled with more life than ever. Today I will graciously
cling to the stability of 50% all while tirelessly fighting to keep it. Love to
you all.
Keep your eyes on the horizon and enjoy today’s steady waters.
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