by David Ahlman

"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..." 
" 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 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 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"