Multiple sclerosis means nothing to me. Unworthy of consideration, I don’t brood over what MS will do tomorrow. Not anymore. Instead, cheery moments pepper the days while teasing my senses with new encounters.
— “Definitely the best series I have ever
streamed.”
— “I just made a new batch of my protein bread.
Better than ever!”
— “He will be the perfect character in my next
story about…”
My thoughts roll back to a common theme.
— “Rogue is going to love it.”
— “I wish Rogue was here to try this.”
— “I can’t wait to share my stories with Rogue.”
Living His Best Despite the Terrible
Setbacks of Multiple Sclerosis
My hatred of a single word has never been greater
than Despite. It is a harsh caveat to place on every storybook moment
I experience. Such statements reveal that my life is a mere consequence. Sorry,
that’s not for me. I choose to live in my romanticized world of denial, where happiness
is normal and normal comes easy, not where I “get to experience happiness
despite living with a chronic disease of the central nervous system.” No.
Subtle flashes of health and grand experiences
make life worth living, even while I remain mired in an incessant and punishing
sentence of life with multiple sclerosis. As much as it rules my life, I’m not
bitter.
How I live is not the aftermath. I despise the
nightmare for other reasons.
True fear follows consequences, be it dealing
with the fallout of a single life-altering event Because of MS, or
managing the repercussions of horrid aftereffects that reverberate on a
constant (occasional/random/unexpected) cycle, again Because of
MS.
The disease damages the myelin sheaths that
cradle nerves in my brain and spine, wreaking havoc on my ability to run, walk,
climb stairs, etc. That’s MS; every patient deals with that fact. And I negotiate
the obstacles, discovering assisted or alternate ways to move. Concessions are
part of life, I get it. A passionate desire to fight the inevitability of my
decline forces me to accept assistance. I wear a brace on my leg to reduce the
impact of foot drop. I have spent thousands of dollars out of pocket to take
part in cutting-edge treatment programs. Elliptical and cross-training machines
in the gym are part of my standard workout regimen (1 to 2 hours of intense
exercise, 5 or 6 times a week) as attempts to delay the gremlins tearing me
apart from within. There’s more, but you get the point. I will not go quietly…
The aftermath finally reveals itself when I am
with Rogue. We are not active together, not how a daddy should be with his
14-year-old daughter. Much of our time is sedentary. Walking takes so much
energy and exhausts me the moment we move. My daughter yearns to fly beyond her
constraints yet acts content in the world she knows. She is a caged butterfly,
but only with me. That image is terrifying.
Mirroring the loss in my left leg are the defects
in my upper body. Years, possibly months away from being nothing more than a
stump, a shadow of past glory, my left arm fades at a predictable pace.
Resistance bands and physical therapy offer a hint of comfort. I need to feel
like I tried, but my southpaw days are over. Since we have not yet developed
that breakthrough treatment (but, damn, we are getting closer), I track the
degradation in real-time. I’m not going to cry out, “Woe is me,” but I will
continue sharing stories of my loss and flood my channels with images of my twisted
form to raise the money those scientists need as they close in on that development.
Once more, Rogue suffers the aftermath of my
inadequacies. I’ll say what she won’t, as she never stoops so low. My daughter
is stuck with a father who cannot do the things she needs. Watching her dance
around a volleyball court is an amazing display of talent and hard work.
Fathers take pride in watching their daughters progress, boosted by the
countless hours they spent knocking the ball around together. Laughter echoes
across the court when they play a scratch one-on-one game. Every child
remembers the day they first beat daddy.
Rogue does not have that. Instead, I watch from
afar and hope someone else fills the role I can’t.
Attempts at everyday life, my bid to act, move,
and live how I’m supposed to, often end up with me splayed across the floor.
Over the past year, I’ve experienced at least ten falls that the judges would deem
significant. At least four have bruised my left rib cage. I think I continue
to aggravate an injury that has never healed–my ongoing cycle of pain and
damage. I blacked out twice. Every time this happens, I dust myself off, wipe
up the blood, and return to what I did before that minor inconvenience. My body
hurts for a bit of (or significant) time afterward. Thousands of reminders echo
the same message: “blah, blah, blah, life sucks, get over it, keep moving.” I
keep moving. Continuous injury is more accurate than reinjury–my ongoing cycle
of pain and damage. Despite, that evil word, never enters my
vocabulary.
Rogue cleaned blood in the garage this weekend
after my last fall. The first thing I remembered was sitting on my bed, holding
a towel to my face. She took care of everything until her mom came to pick her
up. I shrug off the entire episode as “just another day” while she remains stuck
with the memory of whatever happened. My daughter shouldn’t have to shoulder
this much responsibility. I want a teenager to test the boundaries of my patience
rather than caring for the frailty of my body. What I want doesn’t matter; she
alone must face the consequences of a father battling multiple sclerosis. I don’t
live Despite, but Rogue must live like this Because.
Bike MS is less than a month away! Morbid
curiosity pushed me to try a short ride last Saturday to see how my body would
hold up. My left side’s exponential breakdown makes it nearly impossible to
ride, even on a recumbent tricycle. Searing pain from bruised ribs and a welt
on my forehead that will not accept a bicycle helmet confronted me with a
painful reality. My broken-down frame cannot ride this year.
MS has pushed and pushed, a constant battle to
see how long it can push me out past the brink of sanity before the
inevitability of a breakdown creates the aftermath I avoided for so long. I
spent the last 24 hours debating my next move, hoping to unlock salvation
before multiple sclerosis pushes me past my breaking point. Long gone is any
hope for a deus ex machina that will deliver a solution before my reality collapses
and sends me tumbling into madness.
Before the cliff gave way, before “something” had
a chance to send me over that razor-thin lip, I jumped. The parachute risers
are unattached, and my reserve is filled with peanut M&M’s to snack on
during the long freefall.
The fact that I cannot ride in bike MS this year
will become the reason we need to overcome the devastating effects of multiple
sclerosis: it has destroyed the remaining piece of a past I used to refer to as
me. “Fuck you, MS! This is why I ride” is gone. All that remains is “Fuck you,
MS!” I’m okay with that. Without the safety of the only constant in my life
since 2003, my jump sends me into a void where nothing is guaranteed.
I don’t want the cautious life, the easy path
where I am guaranteed to morph into another tragic statistic who got dealt a
bad hand, put up a good fight, set a noble example Despite, yet
eventually mired into an inevitable collection of sad stories.
I refuse to be a
voice without a voice, instead hiding behind my words.
Crafting lives and forging replicas of Kevin has its place. My stories will
continue to construct those roles and stock them with the reality my mind
creates. The other reality, the one people can see, has suffered because of
this deception. Accusations of bravery and strength in the face of multiple
sclerosis leave me feeling like a fraud. The truth was chopped up and
fertilized into the characters with the lives I had, wanted, feared, or dreamed
about. There is no longer an correlation to any version of me.
From Scylla to Charybdis
Greek mythology shares the tale of Scylla and
Charybdis, two monsters straddling the narrow waterway between Sicily and
mainland Italy. Ships navigating this Strait of Messina face the horror of two deadly
choices. Sail close to Scylla and the beast would pluck six sailors from your
vessel; everyone else would live Despite the loss of those six.
Navigate on the side of Charybdis and risk losing your entire ship to its
deadly whirlpool, but you might just save everyone. All for nothing is the
ultimate Because. No longer willing to continue with multiple
sclerosis chipping away pieces of my existence, I faced Charybdis.
Perhaps historians will document my leap as a
tragedy where I abandoned any reliance on futile gestures and tokens once meant
to guide me toward a cursed future. “At least he said, ‘I tried.’ What a
glorious life!”
Then again, the climax of their story (my story) could
be the ultimate example of strength in the face of adversity, overcoming a
once-dismal to usher in a new standard in personal care. “Everything changed
when he said, ‘I’ll try.’ What a glorious life!”
A third option might lead to another Greek
tragedy with a predictable yet fateful ending. If plummeting to a devastating
conclusion is the outcome of my life choice, my obituary next year will note
the end for a man who threw away 25 years of a “safe decline” in favor of a
better way to go out. “In the end, he tried.”
Where
Everything Goes from Here
A final answer to my resolution
doesn’t matter. Nor does that ideal situation or the direction in which I’m
leaning. None of them matter. At least, not now. My only
concerns will remain My Body, My Mind, and My Little Love.
Everything will be mine to experience and savor. Because
will replace Despite as my rationale for what I do every day. I
will write stories. I will record videos. And I will leave a trail of
breadcrumbs for you to follow. Join me as I undertake adventures, both big and
small, because I am no longer concerned about the constraints multiple
sclerosis places on me. Bear with me when I share some of the horrific aspects
of my life Because of the devastating effects that multiple
sclerosis blankets me with. Without modesty or humility, you will see just how
far multiple sclerosis has pushed me. I hope you understand why I snapped and
fought back.
Multiple sclerosis means more to me than I
expected. This phase of my life is the Aftermath of Multiple Sclerosis.
My fight is not over. I will continue to fundraise
for the National MS Society with the goal of ending this nightmare before it
settles on the next generation. Bike MS will continue to be the cause we
support. Maybe I will get back out there someday. If not, I will make it a
constant reminder of why I fight: because of what multiple sclerosis took from
me.
Please support our fight: https://MSSociety.donordrive.com/participant/Rogue
Please follow my journey:
https://NeverStopNeverQuit.com
https://www.facebook.com/NeverStopNeverQuit
https://twitter.com/NStopNQuit
No comments:
Post a Comment