Twin tennis players....

Bob and Mike Bryan...I have no idea which is which

The August 31st issue of The New Yorker features an article called "Perfect Match" by Burkhard Bilger. The topic: a pair of identical twins--Bob and Mike Bryan--who are professional tennis players, specializing, not surprisingly, in doubles.

The ESP twin thing they've got going makes them a nightmare for non-related doubles players. They play doubles, Bilger writes "...as if they were a single organism."

"In between games," he writes, "the twins would sit side by side and rest, swigging water from identical bottles as ball girls in red miniskirts held matching sun umbrellas above them. I felt like I was at the Ziegfield follies."

It took me awhile to pick it up because I'm not that into tennis, and I'm not that into profiles of athletes. It was only the twin thing that made me rip it out of The New Yorker to read later.

You do learn something about tennis--the fact that players can now specialize in being a singles player or a doubles player (a fairly new phenomenon), for instance has apparently had a negative impact on the skills of those who play singles.

More interesting to me were the themes of how parents decide to raise twins (the father in this case has very self congratulatory ideas that left me a little uncomfortable), the uncanny connection between them, and the theme of how interdependent twins can be.

In the article, the interdependence is mostly emphasized in a good way. But there's a dark side to it, too, that isn't really alluded to...and it's the failure to go beyond twin fascination, in this piece, that made it ultimately not all that interesting to me.

When I went to the Twinless Twins meeting in Ohio, many years ago now, one of the first exercises twins who'd lost a twin had to undertake was picking the color of the folder that held the meeting agenda when they checked in. That was a challenge for many who'd been used to joint decisions all their life. At that meeting, I heard stories from twins who now found ordering their own food in a restaurant challenging...because their twin has always done it for them.

It's not that I insist on seeing the dark side of twinhood. It's that I want more than the singleton's attempt to "get it."

As it is, this is an interesting article, written from the perspective of a singleton enamored by the uniqueness inherent to twinhood, in this case in the realm of tennis...but with not so much new insight.

I wish a professional writer who was an identical twin would attempt a piece like this...then we all might really learn something new. As it is, we're so often left with our noses pressed against the glass, wishing we were, at least for a brief time, an insider.

"I'm already a brother..."

Tom Hanks in "You've Got Mail"...his Aunt Annabelle is the little girl on the left...all part and parcel of a modern family......

So we were reading Henry one of the few new sibling books we've picked up that we actually like, and I said something flip like, "Do you think you'll like being a brother?" And Henry said: "I'm already a brother."

I don't know if he meant that he already felt like one, because he's known about his little brother for awhile, or if he was referring to the fact that he has three older half-siblings. I should have asked him. But I was too taken aback.

Conscious as we try to be about the nuances of what Tom Hanks, in "You've Got Mail," referred to as "a modern family" (Tom Hanks has an elementary school aged brother and aunt in that movie, thanks to re-marriages by his father and grandfather) it's so easy to flub it. "Ack," I thought, "I should have made sure to say BIG BROTHER."

I felt terrible. We refer to Henry's older siblings as his brothers and sister all the time...so that he understands his relationship to them. But the fact is, as much as I presume to know about siblings, via having pondered my loss for what feels like forever, half-siblings, and those divided by many years, is a realm I know nothing about.

I have a feeling I'll be learning a lot when the new guy arrives--imminently--from both the younger and older Raeburns.

Two Brothers

When I realized I was pregnant again, I figured I had nine months to adjust to the news and the new reality—and that Henry, then about two-and-a-half, who we planned to tell much later in the game, would have lots of time, too. I figured he really wouldn’t have to start dealing—whatever that was going to mean—until the new guy was born. Wrong.

We told him when I was about five months pregnant, the same night we made the phone call to friends and family. He seemed vaguely interested. We weren’t even sure if he absorbed the information, frankly, and speculated that we might have to tell him a few times before he got it. Wrong again.

When we picked him up from school the next day, Janet, one of his teachers, with whom Henry shares a lot of confidences, said: “I hear Henry is going to be a big brother.” Henry ignored us, and went right on playing Legos with a couple of the other kids. The next day, when we picked him up from gym babysitting, the sitters there said: “We hear Henry is going to have a little brother.”

Clearly, he took it in. And it became equally clear that, though we were trying to talk up big brotherhood as a thing that would involve superior capacity and lots of teaching-baby-stuff, poor Henry was anxious. Very anxious.

We had only recently started him on three full days of pre-school, which he’d been adjusting to very nicely. But suddenly, drop off became more agonizing than in the days when he’d started, almost a year earlier. He clung to me, he cried, he had to be pried off of us.

When we went to pick him up at the end of the day, he was fine, not ready to leave. The teachers assured us that he “got over” his separation anxiety within minutes. And they told us something else interesting: They see this all the time with soon-to-be older siblings.

Some, they said, breezed along the full nine months, oblivious, or happily anticipating their new sibling, only to freak out when the new one arrived. Others, like poor Henry, got anxious about what it all meant beforehand. Those kids actually do better after the new arrival, the teachers said.

I guess Henry has inherited my defensive strategy of anticipating the worst. On the positive side, I hope it means he’s okay when baby #2 arrives. On the negative, I hate, really hate, to see him stressed out and not know how to help.

I sort of threw up my hands awhile ago, and decided that I couldn’t anticipate or solve whatever was coming my way come November, so that the best stay-sane strategy was just not to think too far ahead. It’s worked for me, thankfully. But how do I help an almost three-year-old do the same?

One of my friends, in response to some of my how-do-you-handle-two? questions referred to me as the biggest sibling expert he knew. But that’s not really true. I’m really good at getting sibling loss, sadly. But as to what it means to have one, and how to raise them? Clueless.

And on one final note, I was telling Paul the other day that, when I thought of having a sibling, my thoughts were good—my brother was already present in the world when I arrived, and I thought he was the coolest thing ever, despite his sometimes ambivalence toward me. He used to say, with a meaningful glance at me: “My life was perfect for three-and-a-half-years.” (You can guess the age difference between us.)

But those were the thoughts of a younger sibling. Youngest sibling. I never really got it. Never saw my arrival from Ted’s point of view. Now I’m seeing it through Henry.

Hindu tradition recognizes sibling relationship

Wow. Check out this article about a Hindu ritual honoring the relationship between brothers and sisters. “The brother-sister relationship in Hinduism is quite unique. It is so pure you can’t describe it in words,” says one person quoted in the article. Very cool. More later.......

Movie review: Departures

I kept seeing this one—a Japanese movie which won the Academy Award for best foreign feature film—in The Quad listings and trying to get to it, but the timing during the day (my usual movie-going time) just wasn’t working. I was so happy when Paul noticed it, too, and suggested we use some sitter time to check it out.

Departures is the story of Daigo Kobayashi, a passionate cellist, with a dream job in an orchestra, who finds himself abruptly out of job—and in huge debt for a very pricey cello-- when the orchestra dissolves.

What do you do when your dream has fizzled and you’ve got to re-group?

You go home, and you look for another job. Daigo and his apparently unflappable wife, Miko, head to Hirano, in northeastern Japan, where Daigo grew up. Daigo has inherited the house he grew up in from his mother, who died while he was abroad some years earlier. (His father abandoned the family when he was a child.)

Daigo sees a job listing for handling “departures” that doesn’t require experience, and, assuming its some sort of job with a travel agency, figures he’ll apply. Turns out that “departures” was a typo. It’s the departed that he’ll have to handle.

The business is all about “casketing,” i.e. a Japanese ritual in which dead bodies are prepared for the casket, and, at the end of the ceremony, placed in the casket. And it pays really well.

Daigo, who has never witnessed a death nor been part of memorializing one, can’t say no. He’s enticed by the money and Sasaki, the endearing curmudgeon who owns the business, and he’s frankly too nice and well intentioned to find a way to back out of the situation. He ends up going along for the ride.

It’s a great ride.

Departures, like Ghosted, is a window into another culture’s approach to death. And it’s an interesting one. On the one hand, the ritual of casketing is truly gorgeous—a reverential process that involves symbolically wiping away the pain accrued during time on earth, dressing the body in burial clothes, and making the person up (if the family requests it), to look their best, before placing them in the casket. All things that happen here, at a mortuary, but behind closed doors.

Here you, and the family, who sit nearby, see it up close. You’d think that a culture that created this lovely ceremony would be better at handling these situations than we are. Nope, at least, not according to the movie. Turns out the Japanese are just as death-leery as Americans. Daigo is too embarrassed to tell his wife what he’s up to. He lets her assume he’s working for a travel agency. (There’s a predictable reveal and accompanying drama over this one.) And he's ostracized by people in the community who disdain what he's doing.

And the grief-stricken families are just as un-done and un-resigned to death as those we know. Each death, each family, brings it’s own assortment of heartbreaking and sometimes funny complications. The beautiful young woman, a suicide, who they discover, in the process of casketing her, is actually a man, leaving the two casketers in a quandary: make “her” up as a woman or man? The fight that breaks out, among the family and friends, over the question of who’s responsible for death of a young girl killed on a motorbike.

We see it all. So do Daigo and Sasaki. And we watch as people struggle to come to terms with their losses. Along the way, there’s a nod to the “ambiguous” ceremony-less losses in life—people, gone but not dead, and dreams, for instance—and how hard it is to wrestle with them, as well.

It’s all very real, and very touching. Ultimately there are many opportunities for one realization: It’s a privilege to be here, walking around, living our lives, and the death of a loved one, and even someone you don’t know well, is an opportunity to honor that fact both for the other person—and for yourself.

I left the movie humming with appreciation, both for the movie and my life.

Movie review: Ghosted

All I needed to hear about this movie was that it explored the aftermath of grief and loss and, of course, I was interested. (To anyone unfamiliar with my history, the loss of my brother when I was 14 left me with an apparently life-long interest in these topics.)

So, last Thursday, on a pre-school day when we should have been working, Paul and I caught the 1 p.m. show at The Quad. Ghosted is the story of Sophie Schmitt, a Hamburg-based video artist, and her lover, Aing-Li, a young woman from Taiwan. They meet when Aing-Li travels to Germany to visit an uncle, work in his restaurant, and uncover a secret about her birth.

We learn all of this in flashback. The movie actually begins the tale after Aing-Li’s death. We don’t know how it happened for quite awhile. Or why. All we know is that Sophie, who we first meet as she opens a video installation entitled “Remembrance” in Taiwan, featuring Aing-Li, is sad, confused and lonely.

Enter Mei-Li, a Taiwanese journalist who first appears at the opening, trying, earnestly, to cajole Sophie into an interview about her relationship with Aing-Li. Both women are drawn to one another, so much so that Sophie drops her guard and agrees to hang out with Mei-Li for the day, though she knows Mei-Li plans to write about it.

The day doesn’t end well. And so unfolds a push-pull storyline in which Mei-Li keeps popping back up in unexpected places, trying to investigate the story of Aing-Li’s death. For a while, it feels very much like a detective story—with the potential for an unexpected truth looming around the corner. Ultimately, it's about searching from both sides--the living and the dead.

And I’d love to say more about that, but I’d spoil the tension for you if I did.

I really liked this movie. There’s not a whole lot of depth or “ah-ha” to it. There aren’t any huge revelations about the nature of grief and loss. When the credits were rolling, I leaned over to Paul and said, “What I like most about these movies is the sense that they’re visual travelogues.”

It’s true. We see Taiwan. We see Hamburg. We see it from an urban perspective. And we see it from the perspective of strangers visiting those countries. It’s also a travelogue on death and lost loved ones from a Taiwanese perspective.

As I said, it’s not a huge movie by any means, not in financing or in its point. But I did really enjoy it—and I was only a tiny bit wistful about not having spent the time working (huge for me). I’m grateful to co-writers Astrid Stroher and Monica Treut (who also directed) for this small window on the way another culture sees loss.

Why do we mourn for celebrities?

You really must click here to hear my friends, mother daughter pyschologists, Gloria and Heidi Horsley, being interviewed about why we mourn when celebrities die. I must confess, the parts I love most are when Gloria decimates the five steps of mourning myth (Go Gloria!) and Heidi demolishes closure.

There's nothing more validating than hearing people who get grief talk about it. Love it.

FYI, Gloria and Heidi know the score from all angles. In 1983, Scott, Gloria's son and Heidi's brother, was killed in a car accident. Both have since devoted their lives to helping others heal. Check out their organization, The Open to Hope Foundation.

Catcher in the Rye excerpts

I promised them, and then I forgot. Here's one sibling loss related excerpt from Catcher in the Rye. It's Holden, talking about not liking to go visit his brother's grave.

"When the weather's nice, my parents go out quite frequently and stick a bunch of flowers on old Allie's grave. I went with them a couple of times, but I cut it out. In the first place, I certainly don't enjoy seeing him in that crazy cemetary. Surrounded by dead guys and tombstones and all. It wasn't too bad when the sun was out, but twice--twice--we were there when it started to rain. It was awful. It rained on his lousy tombstone, and it rained on the grass on his stomach. It rained all over the place. All the visitors that were visiting the cemetary started running like hell over to their cars. That's what nearly drove me crazy. All the visitors could get in their cars and turn on their radios and all and then go someplace nice for dinner--everybody except Allie. I couldn't stand it. I know it's only his body and all that's in the cemetary, and his soul's in Heaven and all that crap, but I couldn't stand it anyway. I just wish he wasn't there. You didn't know him. If you'd known him, you'd know what I mean. It's not too bad when the sun's out, but the sun only comes out when it feels like coming out."

Children, Death by Robin Standish

I received this astonishing poem in the mail, along with a letter from the author, Robin Standish, in 2005. Unfortunately, it got lost in the pile of papers on my desk. A couple of weeks ago, I was cleaning up (finally), and came across it. I can't tell you how moved I was, how blown away by what Standish captured, about early sibling loss.

Standish was 7 when her 2-year-old brother, George, died of leukemia. She didn't even know he was sick. Or rather, her parents had neglected to define what was wrong with him. She assumed, as she writes in her poem, that he had "some ordinary illness"---chicken pox, measles. One day, she woke up, and he was gone. Standish was 68 at the time she wrote her letter, enclosing the poems.

Sibling loss, sadly, is a life-long experience.

I contacted Standish as soon as I read the poem. The poem is going to be published in the fall, along with some others, by Writers' Workshop India. I can't wait to see what else she's written. Meanwhile, she's kindly allowed me to "publish" the poem that caught my attention here.


Children, Death
for George William Dickerson, 1941-1943




I.

Already in the sepia photograph
you can tell--
something is wrong.

The house with its prim shutters,
its windows of repeating panes,
seems not to know yet;

or, perhaps, just as a house
contains old secrets, it could hold
events about to come.

Surely I don't know, standing there
in my starched pinafore,
smiling feckless into the sun.



II.

Only my brother knows
he will not live. The angled planes
of his once-round face reveal it,

and his eyes, not focused
in this world, already
explore the next.

The angel of remission held him
long enough for our father to take the picture
and a few weeks more, but only that.

Then Little Bud,
the aspiring botanist's son,
was dead.




III. New Theology

Please, God, I'd prayed,
bring me a brother or a sister,

I didn't care which, my craving
the sign of oblique knowing:

in this family, I'd need an ally
to traverse the jarring cleft

between what I experienced
and what I was told.

My prayer appeared to be imperfectly
constructed, like a fairy tale wish;

I'd pleaded only for a sibling's birth,
neglecting to say I wanted him to live.

Such a belief implies a capricious
and mean-spirited god, a powerful

but loveless god-- a prospect
too alarming to embrace;

believing in no god at all
was prefereable to this.

Then I saw my proposition
had been backwards:

An infinately wise and loving Guide
depends on us to repair the world.

No simple intervention will right
our grave mistakes.

Our hands, our heartminds
are God's only implementing tools.

The work is ours.









IV.

No one tells me your white corpuscles
are multiplying exponentially, that leukemia
will overtake you this night or the next,
so I idly sip milk and read to you,
the story of a doll who lives a hundred years.

I rock in the chair beside your bed, believing
you have some ordinary illness, like chicken pox,
and you'll wake tomorrow with nothing more
to show for your distress than a few round scars,
like mine, crinkled at the edges.

Next morning I find your bed empty,
the blue quilt thrown back, knotted, cold.
They can do this, then, our parents,
conceal death, make you vanish,
prevent us even from saying goodbye.

To think that I had trusted the simplicity of sleep,
darkness, parents.


V.
A zeal to call my brother back compels me.
I want to wake him, force him
out of his image in the picture, alive.
I scream and scream, but no sound comes.

I conjure desperate beliefs:
surely Dad's elaborate new camera has the power
that together with my will, can sustain the person
held in the image, draw him forth, back into the world.

Didn't my brother always reappear among
the garden shrubs when we played hide and seek ?
If the photo, once concealed in its envelope
is now in my hand, then surely

my brother must be somewhere, too,
hidden in the drawer of the great walnut bureau,
or sleeping peacefully among the fragrant linens
of the cedar chest.

Although I breathe in deeply, scents
of lavender and cedar hang in the empty air.


VI.

A sense of ultimate powerlessness
creeps over me, numbs me
from my toes up, as if I also vanish,

or become a kind of ghost myself,
transparent, something else
our parents have disappeared,

or at least forgotten
in their overwhelming grief.
If my family does not notice me, do I exist?

If my brother is no longer here, can I join him?
How to survive the secrets of that perfect-looking house,
the only child they have left?




VII.

Brother, spirit guide, witness
while I labor
to unwrap the secrets,
lay them bare, reclaim you
and the lost parts of myself.

You are my Plato, urging me
out of the cave with your sweet,
pragmatic song as I stumble, wincing
into light.





(this set is part of a series of childhood memory poems)

Children born after a stillbirth--are they affected?

Well, my uneducated response to a question like this would be, "Duh." But, I have to admit, I would have no idea just how they'd be affected. A new study in The Journal of Child Psychology and Psychiatry has tried to come up with some answers, though. British researchers followed 52 mothers who'd had children after a stillbirth, to see if they could discern any effect. Basically, the kids were alright--but the researchers did report "less than optimal" mother-child interaction, and comment on the fact that these mothers tended to report more problems with their kids, and to be more critical of them. Here's a write-up of the study. These findings makes me sad. It's not that I don't feel for the mothers. I can't even imagine what it must be like to give birth to a stillborn baby. It's just so sad for the kids who come next, and have no idea what they're being born into. It's that actor-coming-into-a-play-without-a-script phenomenon I talk about in my book. I hope studies like this make it possible to help these moms early on, so that the loss doesn't get transmitted in this way.

Organization: Active Minds

So, again, I’m flipping through my sibling loss file, and I come across something amazing, in this case, a profile of Alison Malmon. When she was a freshman in college, Alison’s 22-year-old brother, Brian, who was on leave from college, committed suicide.

After his death, Alison realized that Brian, who was a star on campus, both for his accomplishments (sports editor of the paper, president of an a cappella group, and a 3.7 gpa, among other accomplishments) had been hiding a terrible secret: he’d been hearing voices for years.

“I firmly believe that Brian took his life because he didn’t know how to live with mental illness,” said Malman, in the New York Times article. In her junior year, Malmon started an organization called Open Minds, designed to raise awareness about mental illness on college campuses. At the first meeting, three people showed up. But she persevered.

In 2003, Malmon graduated from the University of Pennsylvania, incorporated her organization, now called Active Minds, and became the youngest recipient of the Tipper Gore Remember the Children Award from the National Mental Health Association. At the time of the article (2007), she’s just gotten a $100,000 grant from somewhere else to do outreach.

“The goal is a chapter on every campus, but more realistic is that we’ll have about 300 chapters in the next three years,” she said in the NYT. Check out the organization’s website at www.activeminds.org.

And fyi, for those familiar with my sibling loss lingo, this is a beautiful example of carrying. For those not familiar with it, search the blog for an explanation

Book: Apples and Oranges

I don't usually comment on books unless I've read them, for obvious reasons. But in going through my "Ted is Here" folder this a.m. (way too early this a.m.), I came across a review of the book Apples and Oranges by Marie Brenner. In it, Brenner, a high profile writer for Vanity Fair, explores her relationship with her brother, Carl, who couldn't be more different. "Our relationship is like a tangled fishing line," she writes (I'm cribbing from the review, btw.) "We are defined by each other and against each other."

It's Carl's diagnosis with cancer that compells her to understand who they are as siblings better. As far as I can tell, she never comes to a conclusion. (Obviously, I need to read the book.) The review does mention the paucity of sibling research to help her understand. Brenner, and the reviewer, are right--there is a dearth of sibling research. But there was one bit of research, by Robert Plomin, PhD, a psychologist with expertise in behavior genetics, that speaks to the point of how siblings can be so different.

Plomin's take is that, though siblings do share many genes in common, they grow up in different environments--their parents are different, by dint of a few years experience, their school experiences are separate, their friends separate, their social lives different. All of these externals provoke differences in personality.

Jerry Rothman, a pscychologist who'd lost a sibling growing up and later realized it had a huge impact on who he was, explained it to me this way: "When I was growing up, my favorite meal was chicken," he said. "But my sister's was steak." The difference, he says, reflects the family's differing socioeconomic circumstances as time passed, i.e., in his early childhood, steak was too expensive to be an option. By the time his sister arrived, they family was experiencing better times. I thought it was kind of a lovely example.

(Rothman, incidentally, started one of the first centers for sibling loss, designed to help sibling mourners cope. I don't know if it still exists....it was in Chicago. Rothman, sadly, has since died.)

There was another researcher I came across, Francis Schachter, I believe her name was, who wrote a paper on sibling differentiation. Her take was that siblings become different as a survival technique--they look to fulfill different roles in the family. There's another slightly nutty researcher..oh, what is his name?...who has a similar, Darwinian, take.

At any rate, this isn't to say that there IS a ton of sibling research out there. There isn't. But there are some who have given thought to the same question that interests Brenner, and it's interesting to see what they've come up with. I really should look into what's been going on in the field lately. Meanwhile, I think I might pick up Apples and Oranges. I'm sure it'll be thought provoking......

At the least, it appears to be yet another book in the genre of sibling loss memoir--a HUGE, unrecognized, genre--albeit one with a more sharply defined angle than most. The reviewer makes mention of Carl's ashes in the last paragraph. I'm guessing he didn't make it.

Holden Caufield--still relevant?

First off, I love J.D. Salinger and all of his books. So I was surprised when, as my step-kids went through that particular reading phase in high school when they were assigned Catcher in the Rye, they reported that they kind of hated it. Whaaaat?

One big problem, they said, was that they couldn't really relate to Holden, the teenage, trash-talking, car-wreck of a main character. As I thought about it, it made sense. I mean, the language is dated. Holden's lifestyle--tony prep school, money, a lot of freedom, doesn't resemble the way most kids live. (Unless you watch "NYC Prep." And here's a tip: Don't.)

I ran across this article in the Times the other day, that speaks, in fact, exactly to the lack of rapport modern kids (Gee-yod that sentence makes me feel old) feel with this book and this character.

So why am I bringing it up at all? Because Catcher in the Rye was the first book I ever read that made me think someone got what it felt like to lose a sibling. I read that book not as the story of a typical disenfranchised teenager, or as the amusing romps of a rebel teen, but as the diagram of a nervous breakdown, brought on by the loss of Holden's younger brother, Ally, to leukemia.

I don't have the book in my office, or I'd quote from it. I'll post a few quotes shortly. But, really, it's heartbreaking, particularly the section from which the book's name is drawn. I never see this aspect of the book talked about, which I find odd. Maybe it's just me, looking for siblings and sibling loss. I am, of course, prone to that. But...I don't think so. Sibling loss is a theme, in fact, in every single one of Salinger's published books and short stories (God only knows what's in the pile of unpublished stories he's reputed to have written.)

At any rate, I was bummed when my step-kids weren't into the book. And I guess it sort of saddens me to see it get dated in the eyes of so many. But, for me, as a bereft sibling, it will always be relevant. Give it a read if you've got the time. And read Salinger's other stuff, too. It's well worth it.

Giada De Laurentiis on the loss of her younger brother, Dino, and kids….

If you poke around in sibling loss literature, one unanswered question you come across is—does losing a sibling make sibling survivors more or less likely to have children? And do they tend to have “extra” children, just in case they lose one?

FYI, I don’t have an answer to this. In my case, I simply had too much baggage to deal with to have children earlier in life. (I had my son, Henry, at 40.) But the question does interest me. As does the issue of how sibling survivors like myself parent siblings (something I have no experience with). At any rate, I’ve always got an eye peeled for references to this subject, so I was intrigued to see it brought up by Giada De Laurentiis.

I had no idea that Giada had lost a sibling. Partly, I guess, that’s because she apparently didn’t talk about it for a long time. Her story in brief: Giada is the eldest of four kids. (Her grandfather, for the record, was film producer Dino De Laurentiis.) A few years ago, her brother, Dino, died of melanoma. (Click here, to see a clip of her telling her story, and making a public service announcement on the importance of sun protection.)

I’ve seen and heard Giada, a new mother, make comments lately about almost not having children, because the thought of having to face the loss of one, after the loss of her brother, was too much to contemplate. In some references I’ve seen, it looks like her daughter was an accident, but she’s grateful it happened, because she’s not sure she would have had her otherwise. In the Redbook excerpt, below, the story is cast a little differently. Either way, the struggle of surviving siblings re: kids is in evidence.

One of my younger brothers was diagnosed with skin cancer at 29 and passed away not too long after that. We were very close. He always wanted to have children, but he didn't get to. And after he died, I remember thinking, You know, maybe there's a place in my heart for someone else other than all the people I already have in my life. I know I was very afraid.... My brother's passing made me afraid, I think because I was afraid that we could have a child and lose him or her too. I didn't know if I could go through that kind of pain with anybody else the way I did with my brother. So for a while, I was very down on the whole idea. I thought, I don't want to have any more relationships. I don't want to have anybody that close to me. But a few years later, I thought, If I never have a child, that might be the saddest thing for me.

I can totally relate. I don’t regret having a child, or having one later in life. But I think I tend to be over-protective of Henry because I do know that horrible things can and do happen to children. There’s a lost innocence that comes with childhood sibling loss. I wouldn’t trade Henry for anything, but, truthfully, I do feel terribly vulnerable in an entirely new realm now that he’s here.

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!

New sibling loss memoir

I stumbled on this write-up of a new sibling loss memoir, Invisible Sisters, by Jessica Handler, thanks to Google Alerts....I haven't read it yet, so I can't really weigh in, but it sounds interesting.

A brother sums it up....

I didn't know of Dan Miller, an anchorman on Nashville's WSMV-Channel 4 evening news. I learned about him, and his recent death, from a heart attack, through Google Alert. (My good old Sibling Loss alert at work again.) I was reading a little item about his memorial service, though, and came across a nice graph about the words spoken by Miller's brother, Lynwood.

"Lynwood Miller said losing a sibling is a different type of loss. He said that it was like losing a piece of his childhood, losing someone who knew 'who we were' and 'who we are.'"

I lost my brother young, and never got to enjoy the adult sensation of being known that well by someone. I often grieve not only for the loss of my brother, and all that we were, but for the sibling experiences we never got to have.

A new book for the brothers and sisters of people with Down syndrome

“What causes Down syndrome?”
“Why do people stare at my sister in public?”
“How do you deal with people who use the word ‘retard’?”
“Where will my brother live when he gets older?”

A new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters (Woodbine House, February 2009), answers these questions and more. Aaccessible to kids as young as 11, the questions in the book are based on brother-and-sister workshops led by its co-authors Brian Skotko, MD, MPP, a physician at Children’s Hospital Boston whose sister has Down syndrome, and Susan Levine, a social worker with Family Resource Associates, Inc. (Shrewsbury, NJ).

The book tries to fill in a long-standing gap: Resources and support services are geared toward parents, not siblings, say Skotko and Levine.“Oftentimes, siblings exist in emotional isolation – they have so many questions about Down syndrome and the feelings they are experiencing toward their brother or sister. They frequently wonder whether it’s okay to feel not only love and joy toward their sibling but also frustration and embarrassment, at times.”

Check it out.

A disappointing response...

I have my Google alert set to send me newspaper articles and mentions of sibling loss. Often, what I get is a pair of banks or companies being described as siblings, i.e. Freddie Mac and Fannie Mae. But recently I got a letter to the expert type of piece that appeared in The Connecticut Post. It touched on an area I’m interested in—and that’s very under-studied: Sibling loss at an older age.

I haven’t done a ton of digging in this area, but what I have done suggests to me that it’s every bit as painful to lose a sibling when you’re older as when you’re younger. (That, “well-they-had-a-long-life” never makes anyone feel any better.) In this case, the “expert” responder sort of got it, but had no idea what to do with it—so she punted and went with a topic she’s comfortable with, i.e. the importance of taking your medication.

I was…disappointed…in her answer.

Here’s what the person wrote in:
I hope that you can help me convince my mom to start taking her pills again. She went through a very traumatic experience with the passing of her sister. My mom and her sister were very close. Clara was nothing like my mother -- very organized, educated and always following the doctor's orders. She was considered healthy with only some blood pressure problems and occasional back pain.

She was taking all of her medications, went to her checkups and got a flu shot every season. She was the one to scold my mom for her casual approach to her failing heart (my mom was diagnosed with a weak heart and congestive heart failure three years ago). To my mom she seemed indestructible. Four weeks ago, my aunt passed away unexpectedly. She had a massive stroke. She was gone within less than a week.

She was not even 76 yet, and my mom is the older one at 80. Now my mom is very upset with doctors and will not take her medications. "What good is it -- Clara did everything they told her to do and look what happened!"I worry that she may be depressed, but I also worry about her heart. Please give some advice on how I can get my mom to believe in doctors again.

Dr. Beata Skudlarska, the geriatrician the paper tagged to answer this person, starts off pretty well. “I am truly sorry for what has happened to your mom, and of course to her sister,” she writes. “The loss of a loved one is always tough; it is even worse if you lose your sibling and a role model.”

Good so far. But then she goes off on a tangent that left me a little incredulous. “Maybe your story can give us a constructive opportunity to explore some important concepts about the reasons we take medications.”

Whaaaat?

She then goes off on the reasons we take medication (i.e. to stay healthy). Okay. First of all, I think most of us know that, and we didn’t pick up this Q&A because we were looking for a lesson in taking our meds. Secondly, after briefly acknowledging the problem—grief, loss, depression—she goes on her own riff, basically ending by saying this person’s mother is bound to see reason eventually and buck up and take her meds.

“Your mom will recover from this,” writes Dr. Skudlarska. “She is resilient.” (Um, how does she know? ) “I am sure she will get better and resume her medications. I am deeply touched by your story.”

I’m sure Skudlarska was touched, but she wasn’t listening, and as a result, I don’t think she helped at all.

Ugh

What's worse--the loss of a sibing, or the loss of a parent? That's not my question, incidentally. It's something I found while googling around with the phrase "sibling loss." Read more here.

Well this is amusing

It turns out two horror flicks--no doubt, TERRIBLE horror flicks--have a sibling theme. The Friday the 13th remake set to open, yes, Friday the 13th, features a man searching around Camp Crystal Lake (site of Jason's massacre) for his long-lost sister. I don't know any more details than that, but she must have been one of the randy counselors that so offended Jason's sensibilities. The other is called The Unborn, and features a young woman haunted by her unborn twin, who'd like to take over her life, thanks very much. Talk about sibling rivalry. (I'm guessing my friends at Twinless Twins aren't going to be too fond of this one.)

I've always said that there's an unspoken genre of sibling loss movies and books. But this is the first time I've noticed it in the horror genre. I wonder if there are others. Anyone?

Disenfranchised Grief

I just started doing the Open to Hope Foundation's sibling loss blog. Click here to see a new post on the subject of disenfranchised grief, i.e. losses that, for one reason or another, tend to be overlooked and/or ignored. If you're on this blog, you won't be surprised to hear that sibling grief is often disenfranchised.

(The picture, incidentally, is Timothy Hutton in Ordinary People, one of the best sibling loss movies, ever. I don't think he's actually all that disenfranchised in this movie--he's managed to call his loss to people's attention, though I'm not going to spoil it by telling you how. But his mom, played by Mary Tyler Moore at her icy best, just doesn't get it....It's all about her.)