Darius Goes West

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.

Gorgeous short movie about the loss of two siblings—check it out

So, a few months back, I gave a talk about sibling loss at Memorial Sloan Kettering Cancer Center. As you might imagine, there tend to be quite a few bereft siblings in the audience at these things. And they all have stories. Amazing, sad, beautiful ones that both elate me—because they’re a celebration of the bond—and make me want to cry.

This particular evening was no exception. After the talk, a woman named Chrissy Rubin came up to me and told me that she had lost two siblings—Greg, 22, on July 9, 1984, and Carolyn, 43, exactly twenty years later, on July 9, 2004—to the same cause, a malignant brain tumor.

It’s a lesson—which I have learned, humbly, many times—in not getting too caught up in the sadness of your own story. Because no matter how sad yours is, there’s always someone else who has one that can completely knock the breath out of you. Chrissy’s was like that.

It was a rushed encounter—there were lots of people who wanted to say hello, or share a story, before ducking out into what I recall being a rather rainy night. But Chrissy—who I think (but can no longer remember) was one of a number of surviving siblings—did manage to tell me that her brother, Justin, had made a short film about Greg and Carolyn that had won second prize in a film a challenge sponsored by an organization called SU2C (Stand up to Cancer). The organization’s belief is that the basic science we need to treat cancer more effectively exists—but that we need to work harder to get it translated to usable treatments. Their mission is to make that happen.

Chrissy gave me a link to the film, called “No Next,” which I just watched. It’s gorgeous, and I don’t mind telling you it totally un-did me. But in a beautiful way, if you know what I mean. It’s a loving and elegant visual poem to two lost siblings and, by extension, a testimony to the enduring love we carry for those who are gone. It’s also a lovely example of carrying. Check it out—nonext.org. And get your Kleenex ready.

Carrying

Okay, I talk about “carrying” a lot, with regard to sibling loss. What do I mean by that? I mean the tendency we surviving siblings have to find a way to “carry” our lost siblings forward into our present-day lives. It’s a way of continuing the relationship with some one who is gone—in fact, grief-speak for this phenomenon is “continuing bonds.” How people do it varies, but why we do it is more straightforward.

We try to carry our siblings forward because they are part of our identities, and our half of the relationship doesn’t end with their deaths. We need them as reference points to remember who we are. We do it because loyalty and fairness are two aspects of life we learn within the sibling relationship. They continue to inform it well after we’ve become adults, whether our siblings are alive or dead. We do it because it can feel too disorienting and disloyal to move forward in order not to leave part of ourselves behind. We carry them forward in order not to leave part of ourselves frozen, un-aged, in time.

We carry them forward because siblings were meant to be parallel travelers, in life’s longest relationship. We carry them forward because in order for us to go forward with our own lives, whole, unhampered by guilt at having been the ones chosen to survive, we often need them to come, too.

And so we find a way.

Writing books (hello!), fund-raising for a cause, raising awareness about a disease (like cancer) or a hazard (like drunk driving), volunteering, scrapbooking, memorial websites—there are an infinite variety of ways.

What a coincidence!

Yesterday I posted on a new study that looked at the impact of losing an infant sibling when you were very young, or even before you were born. I commented that, though understudied, the stories I’d heard from people suggested that this was a huge—huge!—life event.

Then last night, my friend, psychologist Heidi Horsley, PsyD, who also lost a sibling, and who now specializes in grief, called my attention to a really spectacular essay by Michael S. Roth, president of Wesleyan University, in The Wall Street Journal.

Roth was asked to write a response to that age-old college essay question: What person has influenced you most? His response: His older brother, Neil, who died of meningitis at age 5, and who he never met. Roth was born about 16 months after Neil’s death. “Only after I was a father myself did I learn that having another child was the balm prescribed to help heal my parents' pain,” writes Roth.

Like most families, Neil’s death wasn’t talked about much. Typically, Roth didn’t even know what had happened to his brother until he himself was in his twenties. “We were, my parents determined, going to have normal childhoods,” writes Roth. We were not going to grow up in a house of tragedy. Still, at the moments when the old home movies were brought out, or at the memorial services on Yom Kippur, our parents' pain briefly became visible.”

Is a child born after a dead sibling affected by the loss? Here’s Roth on the subject:

“I was to fill the void left by this loss. Or perhaps I was supposed to create a new life for my family by reclaiming their right to happiness. In any case, I felt a special, but certainly unspoken, role. I was to be the hero who would set the family right again. I was to heal the wounds caused by the death of that beautiful little boy in the picture. Yet I was also to remain the trace of those wounds.

At least that's how I felt the influence of my missing, ideal brother. I was to excel in school, but even great grades never felt good enough. One of the most fulfilling moments of my life was winning a valedictorian award named for my brother at our religious school. As a college student at Wesleyan, I turned to the study of philosophy and psychology, always within some kind of historical context. I told my teachers I was interested in how people make sense of the past, especially in how they deal with loss. My first research papers and then my books focus on how we create a past with which we can live. I wrote about Freud and Hegel, about trauma and about revolution, always with attention to how individuals or groups find ways to overcome significant loss without merely forgetting it. The personal and the professional melded together.”

Any question left in your mind?

Losing an infant sibling impacts surviving brothers and sisters

When I was working on my book, The Empty Room, I interviewed a couple of people who either lost siblings very early in that sibling’s life, i.e. in infancy (and were thus very young themselves) or who were born after the death of an infant sibling. I didn’t have enough people to make a huge case, but it was very clear to me that these were very significant losses.

Sadly, however, because these people had been so young at the time, or were born after the death, few had ever acknowledged them as “real” mourners. Result: Disenfranchised grief. They were often confused about what had happened (they’d been too young to remember, or not born yet, and no one had told them the full story), confused about their role in the family, sad, and left with the sense of not being entitled to their feelings of grief.

So I was very interested to see a recent study out of Dartmouth that studied people who lost infant siblings in the Dartmouth-Hitchcock Medical Center NICU. Researchers (who included sibling researcher Joanna Fanos, PhD, a bereft sibling herself) interviewed 13 adults and 1 adolescent who’d either lost an infant sibling in the NICU between 1980 and 1990, or were born after the loss of an infant sibling there.

What they found: The surviving siblings shared a sense of confusion surrounding the memories of the event and high anxiety rates. Those born after the child's death reported a lack of communication within the family about the death (pretty much the norm in sibling loss, sadly) and a sense that their parents had never mourned the loss (also very common).

"Many participants felt that counseling would have helped their parents," said Fanos," in a Dartmouth press release. Medical providers and family members alike should consider psychological counseling to gain insight into the emotional responses to death in the NICU."

I can see why this issue has been over-looked. Parents are distraught (as they always are after the death of a child). Young siblings are often assumed to be incapable of mourning. Children born later never knew the lost one. But the truth is, it’s a real loss, it matters. And what parent would knowingly allow their surviving children to suffer, un-helped?

I imagine just telling parents that surviving children, and children born thereafter, will mourn the loss, would be a start.

(Source: Dartmouth Medical School: The Journal of Pediatrics: May 2009)

New legislation that would help people with aplastic anemia

Aplastic anemia, the disease my brother had, is a rare bone marrow disorder (it strikes 2 out every million people) that hasn’t been on the receiving end of much research funding. But there’s new legislation in the offing that might change that. On February 25, 2009, Representative Doris O. Matsui (D-CA), whose husband, the late Congressman Bob Matsui, died of a bone marrow disorder, introduced H.R. 1230--Bone Marrow Failure Disease Research and Treatment Act of 2009.

The act calls for:

-A national bone marrow disease failure registry, where researchers could combine their data in one place, sharing results and insights.

-Studies to determine what environmental factors can trigger bone marrow failure. Some diseases that cause bone marrow failure are genetic, other cases are thought to be triggered by environmental factors, like radiation and God knows what else. In Ted’s case, the doctors speculated that it could have been the glue Ted used to put model airplanes together, or a box of oranges too liberally sprayed with pesticide. They even autopsied the family parakeet, who died just about when my brother went into the hospital, to see if there was a connection. But there were no answers. My brother’s case, as in 50% of patients diagnosed with aplastic anemia, was deemed “idiopathic”—i.e. unknown, the scientific word for a shrug.

-Minority focused programs that would make information on treatment options and clinical trials available to minority communities. (Frankly, I don’t know if these communities are more prone to some of these diseases, or just under-served with regard to treatment.)

-Grants to help improve diagnosis and quality of care for patients.

I can’t say I’ve been particularly active in organizations designed to make things better for people with aplastic anemia or related diseases. I don’t know why. I know some people get very involved in disease-oriented organizations after they lose someone to that disease. I just never got interested, somehow. But I’d probably feel differently if Ted were still alive, trying to battle the disease. In fact, I’d probably feel outraged at how neglected it’s been, funding-wise.

I’m sure a rare disease doesn’t look like a good research investment to those handing out money, but if you or someone you care about is the one diagnosed, the “rare” label is irrelevant. You’ve been struck by lightning, now what? I hope this legislation gets passed. We can help by encouraging our representatives to sponsor the legislation. Please do it!