Here, gratis of my friend and fellow sibling survivor, Heidi Horsley, is a clip from another video you must see. It’s called “Darius Goes West,” and it tells the story of 15-year-old Darius Weems, who was born with Duchenne’s Muscular Dystrophy, a progressive and uniformly fatal form of Muscular Dystrophy--the most common genetic killer of children in the world.
What’s the sibling link? In 1999, DMD killed Darius’s beloved older brother, Mario, 19. He has seen the ultimate course of his disease up close and personal, and lost the person who best understands what his life is like.
What’s the movie about? Facing death, embracing life. Darius, who is from Athens, Georgia, had never been across the state line. So a bunch of his friends rented a wheelchair friendly RV—Darius lost the use of his legs shortly after his brother died—and asked Darius where he wanted to go. His answer: West. So they took off, and they documented the trip.
Their ultimate goal, L.A., where they hoped to convince the powers that be at MTV’s Pimp My Ride to customize Darius’s wheelchair. I don’t know if they achieved this goal or not—I’ve got to order the DVD—but I know I’ve got to see this movie. And I believe Darius and his buddies have a new project going now—selling the DVDs of “Darius Goes West.”
Cost: $19.99. Every $17 goes to DMD research. Darius and his buddies are hoping to sell one million DVDs by September 27, 2009—Darius’s 19th birthday—and finance another movie, too.
Not long ago, I got off a plane in Phoenix and confronted the words “Ted is Here,” painted on a pillar in bright orange. I almost cried. Ted, I realized, was the name of a budget airline. But it was also my older brother’s name.
My Ted died of an immune disorder 27 years ago, when I was 14 and he was 17. His story, along with that of another boy in Texas, were merged in the movie “The Boy in the Plastic Bubble.” (Which my family did not authorize.)
Like most people who’ve lost someone they love, I’ve always wanted him back, or at least present, in some way. As a kid, I wished for a spectral sighting. As a young adult, I sought out psychics and mediums, one of whom once instructed me to ask Ted to give me signs that he was still present. Once, I asked Ted to show me a clown. Two days later, at a coffee shop, I looked up and realized I was sitting under a clown mural. My elation was short-lived, however. Had Ted contrived it, or had I unconsciously found myself a clown?
I’m not making a case for the supernatural here. But seeing that “Ted is Here” sign gave me the old I-see-the-clown feeling again.
This blog, which I’m launching on May 27th, the anniversary of Ted’s death, is an invitation to those who knew him—and those who didn’t—to share their thoughts and memories about the Ted they knew, or the Ted they imagined. Hearing about him, knowing that others are carrying a bit of him around with them, is another way of keeping him present. Honestly, I’d like that much better than seeing a clown.
I’ll also be posting thoughts and commentaries on siblings, sibling loss, families and grief—subjects I have, not surprisingly, become interested in. And for those of you who’ve read my book, The Empty Room, which tells my story and those of others who’ve lost siblings, I welcome your thoughts and messages.