Every Thanksgiving, I think of Roy Exum. Before our city’s newspapers merged together, Roy would write his annual Thanksgiving column, listing dozens and dozens of people and events for which he was thankful. There was always some power in this, in creating a long list of thanksgivings, and in hindsight, I realize Roy was practicing the spiritual discipline of gratitude, of giving thanks, and perhaps there is no greater spiritual discipline than this.
So with a nod towards Roy, who gave me my first job as a writer and, on a more serious note, who has been in dire health recently, I would like to tell the story of Darius Weems. He is a teenager from Athens, Ga., whose story is unforgettable, and undoubtedly would have made Roy’s Thanksgiving list.
Darius Weems has Duchenne Muscular Dystrophy (DMD), a version of muscular dystrophy that carries a complete fatality rate. There is no known cure, but most people associated with DMD say the cure is so close they can taste it. But those same people always speak with urgency, for until the cure comes, the disease will continue to remain the number one genetic killer of, as one man called it, our most precious population: children and teenagers.
Darius Weems is 19 years old, the same age of his brother Mario, when he died from DMD. Before Mario died, he asked another Georgia teen – Logan Smalley – to watch over his younger brother Darius. So a few years ago, making good on that promise, Logan and 10 other Georgia teens scooped Darius up (he has lost control over most of his body, unable to move little save his hands), saddled him in an RV, and organized a cross country tour, destined for Los Angeles and MTV studios.
And, along the way, they created one of the finest, most moving, most precious documentary films I have ever seen: Darius Goes West.
The story of Darius begins in Athens, where he lives in public housing and, until the journey, had never crossed the county line. Spending all of his waking day in a wheelchair, Darius is in desperate need of a “new ride.’’ Naming their movement Darius Goes West, the eleven teenagers set their sights on West Coast Customs, the extreme auto-body shop featured in the MTV show “Pimp My Ride.” Their goal was to pimp Darius’s wheelchair, to outlandishly customize it with spinners, leather seats, subwoofers, and Xboxes. But more importantly, they were going to use the MTV show as a platform to educate millions of teenager viewers about DMD.
As Darius says: nobody knows who Jerry Lewis is anymore.
It was a noble cause, and a noble journey. One of the most striking aspects is to see the eleven young men practice such gentle compassion and brotherhood with Darius. Teenage males are so often viewed as unemotional and stoic, as young Rambos in training. But this film highlights the deep love these friends had for each other, and for Darius. Unable to move most of his body, he depended on his comrades as they lifted him into bed each night, carried him into the Gulf as he touched the ocean for the first time, sat together on the edge of the Grand Canyon, held on as they wheelchaired down Lombard Street in San Fran, advocated and fought against the lack of wheelchair accessibility in the US, and wept in the face of Darius’s crippling disease and impending death. They were as graceful and compassionate caregivers as I have ever seen, and if you are looking for role models or hope in dark times, look no farther than this film and these men.
My hunch, though, is that they would shake off those compliments – “caregivers’’ and “role models’’ - for each and every one of them credits Darius as the hero, Darius as the one who taught them the meaning of life. Darius, a teenage boy who had never been across the county line, who was in a wheelchair and can barely use his limbs, who may or may not go to college, or make a lot of money, or even live to see his thirtieth birthday – he is the teacher, the healer, the one who helps us understand the meaning of life. To care for each other. To laugh. To give thanks.
That is why Roy Exum writes columns. That is why a group of friends took Darius Weems west. That is why I hope you are able to see this film sometime this winter season. Darius is still alive, and he and his friends made it their goal to sell one million copies of the film before next July, and with every penny from proceeds going into research for curing DMD, the film makes a perfect gift this season.
The sweet thing about Thanksgiving is that it reminds us of what is important. The story of Darius Weems does the same thing.
(David Cook is a former journalist for the Chattanooga Times-Free Press. He currently teaches American history at Girls Preparatory School and can be reached at firstname.lastname@example.org. To purchase the film or read more about the journey of Darius Weems, visit www.dariusgoeswest.org)
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As the mother of a young fellow with the same diagnosis as Darius, I keep my ear to the ground for all things DMD-related. Therefore, I read many articles about the disease, and people with the disease, every week.
Mostly I look for research articles; the "human interest" stories tend to be uninformative, sappy, and depressing. This article stands out as one of the few that hits home, that gets it right. Many thanks and a salute to the writer for a well-crafted article.