"Peace cannot be kept
by force; it can only be achieved by understanding."
-Albert
Einstein
"Out of the Night which Covers Me"
As
we engaged in watching what is widely considered the greatest motion
picture of the last decade, I was in awe over the acting talent of
the man playing the role of the infamous and sadistic comic book
villain The Joker in the 2008 blockbuster The
Dark Knight.
"Dude—Chris!
Heath Ledger is an amazing actor!"
"I
agree, man, there will never be anyone like him again in show biz."
Bomb
blasts and bullets explode and pulsate, both light visually and dark
audibly, from Chris' 52 inch television screen set atop his black
dresser. The dresser was stationed at the north end of his bedroom.
We were both in between the entrance to the main floor living room
and the door to his personal bathroom. My legs dangled off the edge
of Chris' custom-manufactured at-home hospital bed in his
miniature-sized, 15x10 foot bedroom, choking in between the
centimeter crevice formed between these two pieces of furniture. As I
sat in that position—since there was no space to fit any additional
chairs—Chris took his own usual, everyday position in his
custom-made "Big Bounder" wheelchair his parents and his
health insurance provided for him.
"I
wish I could do that."
"Do
what?" I ask.
"That—make
movies. I want to produce and create films that change people's
lives."
"One
day you will, Chris."
"I
don't know, man... I don't know how much longer I have left..."
Chris
begins to choke up, trying his hardest to hold back the tears he
keeps so well suppressed. A new scene pops up on the screen. Harvey
Dent (played by Aaron Eckhart) stands at a podium, surrounded by
Gotham's media and police force in an attempt to comfort the public
concerning the Joker's recent terrorist attacks on their city.
"To
live..."
I
sit in silence not knowing what to do as the noise echoing from Aaron
Eckhart's lips in the background gives credence to the pain we were
both feeling, "The night is darkest just before the dawn.”
"Black
as the Pit from Pole to Pole"
"Okay,
everyone: take the next fifteen minutes of class time to walk around
campus. As you do so, be sure to ask as many people as you can
questions about the topic you are going to write about for your
literary journal essay."
Hearing
these words put more fear into my heart than I am normally accustomed
to. I am a salesman and am used to meeting new persons and
communicating with hundreds of people on a daily basis, but the task
seemed way too sudden. I didn't know exactly how to phrase any of the
questions I wanted to ask or even if anyone knew anything about the
topic I was planning on writing about. Nonetheless, like every other
student in my course, I doggedly motioned out of the second floor
classroom and down a flight of stairs towards the exit.
Pushing
the school doors open to make my way out of the building onto the
main campus, I was immediately blinded by the summer sun blazing from
above which compelled my eyes to squint. With a then narrower gaze, I
searched anxiously as I stepped slowly forward to seek out and speak
to my first victim—I mean—interviewee.
The
first person I saw was a lerpy looking fella with short
black hair, wearing blue Levi Jeans, and a black shirt with white
lettering which read "E=MC2." He seemed to be moving along
the path with purpose, as he was pretty much sprinting to what seemed
like his next class. I won't bother him, he's busy, I say to myself.
I
peer once more through my Gilbert Godfrey-esque eyes and see a
tall, blonde-haired girl with black high heels, a short white skirt,
and a tight tank top which threw her cleavage into my face. Being
more willing to ask her on a date than question her about the topic
of my paper, I found a reason—yet again—to chicken out.
Disappointed
in my effort, I then looked over to my right and caught the glance of
a Hispanic girl walking my direction. She was short, slightly hefty,
and appeared to be venturing to her next class as she carried a
backpack full of books which made her bag seem almost the same size
as herself.
"Hey!
Could I borrow a second of your time?" I request.
"Okay?"
she responds in broken English.
"Have
you ever heard of muscular dystrophy?"
"I hav-a-not..."
"Oh...uhhh...okay...do
you have any idea on what it could be or mean?
"Ummm...somet'ing to
do wit muscles?"
I
chuckle for a second and exclaim enthusiastically, "Exactly!"
Subsequently,
the remaining five persons I spoke with after her had either the same
or a similar response; they either had no idea what muscular
dystrophy was or just kind of knew. One girl—the last person I
spoke with—had a better understanding of the disease than many of
the other individuals I talked with, but didn't know all the little
intricate details about the disease (which was no surprise).
"What’s
muscular dystrophy? Huh... Well, the word ‘muscular’ obviously
has to do with muscles... sooo... then... dystrophy must mean...
deterioration?
Muscular dystrophy means muscle deterioration?"
"Yes—but
not quite," I joyfully confirm. “Muscular dystrophy is a
disease that causes increasing weakness of muscles—"
The
young woman's face turned cold as she interjects somewhat panicked,
"Is it contagious?"
I
laugh a little, but quickly respond, "Oh no, no, no—muscular
dystrophy is genetic and is caused by a deleted dystrophin gene
(thus the name dystrophy)
on the X chromosome of the mother. Men are usually the only ones who
get this disease."
"Oh
thank goodness! I mean... sorry... that’s not fair to guys. What
was that word you said though—dystrophin?"
"Yeah—dystrophin!
That's the protein that stimulates muscle repair and is essential to
normal muscle function and growth.”
"Wow!
You learn something new every day" she says jokingly.
"Indeed.
Also, if you want to know more, the disease is actually becoming more
apparent—"
She
cuts me off frantically before speeding away, "Sorry—I gotta go
to class."
"Ahhh,
okay, thank—" she vanishes before I can say "you."
Walking
back up the stairs to class, I struggle to discern how black the pit
is between the two poles: those who don't know about muscular
dystrophy or those who now know, but don’t care.
"I Thank Whatever Gods May Be"
As The
Dark Knight concludes
with the credits racing down the screen, the sobering moment created
from Chris' earlier comments resurface. I ask him poignantly,
"Chris,
what are you afraid of?" He tries to speak, but pauses
before responding as his emotions reclaim him. Tears start to stream
undammed down his cheeks.
"I don't want to die."
*
* * * * * * * * * *
On
May 6th, 1992, Zachary Kelven Atkinson was born at the
Cottonwood Hospital in Murray, Utah to his mother, Monica Jones and
his father, Dustin Atkinson. Soon after his birth, his father left
their family, forcing his mother into the work place in order to
provide for her newborn baby and his older sister, Kassandra. Because
his sister was of the age to go to pre-school and almost
kindergarten, Zach's mom didn't have to worry about putting her into
daycare; however, care for Zach was day-in and day-out from the time
he was born until he was fourteen months old.
For
over a year, Zach was raised almost entirely by paid strangers.
Sensing she was neglecting Zach and feeling guilty for the lack of
attention she and others were giving him, Monica soon placed Zach up
for adoption through a brand new adoption agency called A
Act of Love.
It
didn't take long for Zach to find a home. He was a sweet,
even-tempered child with adorable brown, fluffy hair; plump, rosy
cheeks; and soul-piercing brown-eyes. Also, because he wasn't hugged
or held too often by his mother or those who watched over him in
daycare, little toddler Zach craved physical touch. Rarely, if ever,
did Zach cry, especially when he was being picked up from the ground
and carried around. So in July of 1993, Zach found a new family and,
in turn, a new name: Christopher William Bylund.
Soon
thereafter, signs started surfacing concerning Chris' digressing
health. For example, it took Chris until he was two years old to take
his first steps, which is obviously very unusual. Also, Chris
struggled to stand up from the floor and fell over often while
standing. So, after years of observing this behavior, Chris’
adopted parents, Mike and Cindy, finally agreed to take Chris to a
physician to run some tests. In a rather short period of time, blood
work revealed that Chris had muscular dystrophy and,
specifically, Duchenne Muscular Dystrophy, one of the nine
forms of muscular dystrophy.
Chris
and his parents were then directed to a doctor who specialized in
combatting the disease. The medical specialist recommended that Chris
begin a series of steroid injections which would stimulate muscle
growth. This they did.
"The
treatment worked for a while," Chris says, "but by the time
I turned twelve, my body couldn't take it anymore."
At
this point, Chris had to resort to the help of a wheelchair. Thus,
the "Big Bounder" was purchased.
Now,
because Chris was no longer receiving steroid injections, the muscles
which were no longer being activated atrophied or turned into fat,
resulting in large amounts of weight gain and on-set sleep apnea. As
of this moment, Chris weighs roughly four-hundred pounds with no
medical advancements available for someone with his condition to rid
the excess poundage. So, Chris wakes up at the same time as his
two-hundred pound father every day—roughly between five and six
o'clock in the morning—who then helps Chris get ready for the day
by painfully guiding Chris onto a platform in order to pull him into
the bathroom to shower, finishing the morning routine by helping
Chris put on his clothes.
"It
isn’t so bad," Chris admits, "I just wish I wasn't such a
burden...I feel like that's all I've been ever since I was born..."
There
are few men in the world today like Chris, who are as humble or as
kind or as considerate. Though he may struggle to see his immediate
impact on the world or find confidence in himself, "I thank
whatever Gods may be" that his example has unburdened my life.
*
* * * * * * * * * *
"Chris...I
know things look bleak...I know your future doesn't seem all too
bright...or that things in this life will get much better for
you...But...death comes to us all someday—"
"I
know man...I know—It's just...I am...scared that...it will come too
sudden—When my little brother died...we didn't know he was really
getting worse until he was already gone...I don't want that to happen
to me...I want to be ready."
"So
do I Chris...so do I...”
"For My Unconquerable Soul"
Chris
has muscular dystrophy and he knows it better than anyone else. The
consequences of one mutated chromosome have stolen his ability to
walk, jog, and run. His gargantuan, Jabba the Hutt-like
frame chains him to his wheeled throne all-day, every day. He fears
not being able to finish his bachelor’s degree, become a film
maker, find true love, marry, or become a father. He’s afraid of
death, and dying before a cure for his condition can be discovered.
He is but one of the fifty-eight percent of men his age who has
outlasted the disease into his early-to-mid-twenties. He wants to
survive. He wants to live longer. He wants to breath deeper. He wants
to sleep sounder. He wants to feel normal once more.
Recent
advancements in science, medicine, and technology have and continue
to give Chris, those with muscular dystrophy, and all of humanity
glimmers of hope for a cure, but surely there is more that can be
done now while we—the world—wait for our inevitable fates.
Perhaps we can get ready for the unimaginable, but expected by
listening to and for songs from the heart.
Mattie
J.T. Stepanek who, like Chris, was afflicted with muscular
dystrophy and who consequently died in June of 2004 from it, wrote
six books of poetry known as "Heartsongs" and one book of
“Just Peace” essays—all of which were published and made The
New York Times bestsellers list some before and others after his
death. During his life he was often a visitor on Oprah and acted as
an advocate for peace following September 11th and for those with and
those without muscular dystrophy. In his third book of poems, Hope
through Heartsongs, Mattie wrote as a plea "For Our World":
"We
need to stop.
Just
stop.
Stop
for a moment.
…
We
need to be silent.
Just
silent.
Silent
for a moment. …
We
need to notice.
Just
notice.
Notice
for a moment...
In
so many ways, we are the same.
Our
differences are unique treasures.
We
have, we are, a mosaic of gifts
To
nurture, to offer, to accept.”
A
new dawn of acceptance awaits, one of healing and understanding, for
those "unconquerable souls" weighed down and burdened by
diseases both visible and invisible.
Every
person, everyday, fights a war within themselves we would never dream
of enlisting in. They walk (or wheel) off the battlefields of their
hearts, "bloody, but unbowed." These hidden and unhidden
heroes; these masters of fate; these captains of soul; these prayers
for peace; these heart singers are our solace—their examples are
our Invictus.
“And
now, let us pray,
Differently,
yet together,
Before
there is no earth, no life,
No
chance for peace"
