Introduction The movie The Big Chill begins with the death of a character you never meet, except for a few shots of his body being dressed for burial. As it turns out, this faceless individual is instrumental to the plot. His funeral brings his old circle of friends together, to relive the past and renegotiate the present in the wake of his absence. Each person must reconsider who he or she is, individually and within the group, because of his death. You never meet the man who has died, but you feel his absence, which is actually a presence of sorts. Director Lawrence Kasdan got something right here, something that resonates, about the aftermath of loss. The death of someone you love forces you to reconsider who you are. It forces you to belong to a club to which no one wants to be a member, and to which just about everyone, save those who die young, eventually belongs. In her 1978 book, Illness as Metaphor, the writer and critic Susan Sontag writes: "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick." It's the same way with death. Or rather, being a survivor. Suddenly, ready or not, your membership is activated. It's your turn, it's your journey. What now? This book is about my journey and the journey of those who have lost a brother or sister. In 1980, when I was fourteen, my only sibling, my older brother, Ted, died from a rare immune deficiency disease after an eight-year illness, during which he'd had to live in a sterile "bubble" room at The National Institutes of Health in Bethesda, Maryland. His illness spanned a good portion of my childhood, long enough that it had become normal to me. I was devastated when he died. My life, my very identity, was shattered. But I wouldn't understand that for years. And I wouldn't fully explore my loss until I came to write this book. The story of this book began eleven years after Ted's death. At the time, I was working as an editorial assistant at The Washington Post, answering phones, organizing supplies, begging to write small stories, and puzzling over what to do with my life. I'd gotten the job because my father, an oncologist, knew a patient who worked there. Journalism, while not my ambition, was deemed an acceptable form of writing by my parents, because it meant a paycheck. Except what I was doing wasn't really journalism. It was more like standing with my nose pressed against the window. And part of me was still toying with the idea of going to medical school. I'd worked in medical research labs from the time I was fifteen until I was nineteen, labs run by one of my brother's former doctors. I was comfortable in the hospital; it felt like home. I knew sickness, death. They were, if not old friends, familiar companions. And a life outside the hospital, not engaged in crisis-saturated life-and-death issues, seemed meaningless. But the idea of being in the hospital for the rest of my life, confronted with a part of my life I also wanted to get past, also made me feel slightly hysterical. Trapped. What I really wanted was to be happy, to be normal. But I had no idea how to make that happen. The line between what I felt I should do and what I wanted was hopelessly blurred. I frequently did things to pull the rug out from under myself, just to see if answers would become dislodged in the settling dust. Plus, though I craved normalcy, I was much more comfortable with stress and crisis. I found everyday sameness -- breakfast, lunch, dinner, work, bills, the gym -- unnerving. I struggled with the most mundane tasks. I struggled with relationships. I struggled with an eating disorder. I drank too much. I alternated among bravado, exhibitionism, insecurity, and my "invisible woman" routine. I could make myself so quiet that people missed me in rooms and backed into me in elevators. I observed a lot. I molded my reactions, my behavior, to those around me. I was a chameleon, an actress. I had no idea who I was. By the time I was twenty-five and working at the Post, I was old enough to sense that I was both tough and fragile, but not old enough, or wise enough, yet, to know where and how. I abruptly quit my job (the pull-the-rug-out-from-under-myself routine) and called a veteran science writer I knew of. My latest plan was to combine writing with science; I could help people without sentencing myself to a future in the hospital. Calling someone you want a job from, and offering to buy them coffee, is the kind of advice that people give but never act on themselves. But I didn't know any better. Luckily for me, the woman I contacted was amused, and willing to meet. I don't know how the subject of our brothers came up. She knew of mine because she was a reporter. In the pre-AIDS days of my brother's illness, before newspapers and magazines were rife with science and health stories, and before health and talk shows regularly trotted out people with rare medical afflictions, my brother's story had been big news. His story, and that of another boy, were combined for an unauthorized 1976 made-for-TV movie called The Boy in the Plastic Bubble. My family regularly got calls from newspapers, from the mainstream to the worst of the tabloids, wanting to write about Ted. The National Enquirer sent a photographer to his funeral. Though we don't get calls anymore, he and this other boy are still strange, abstract figures in American pop culture. Variations of the phrase "boy in the plastic bubble" have appeared in a Paul Simon song, on an episode of Seinfeld, in a movie satire of the first movie, and as the name of a board game. This journalist told me she had a brother who died at an age close to my brother's -- seventeen -- of cystic fibrosis. Children with the disease have a better survival rate these days, but when her brother was sick, most didn't live to see their twenties. I don't remember exactly what she told me, or what I said in response. I only remember the eerie sense of resonance. All that time, I had thought I was the only one. I thought losing a sibling was my own strange story. I began to wonder if my struggles had been set in motion by my brother's illness and death. What struck me most, however, was that this woman treated the story of my brother as if it were mine to tell. As if, in fact, it had happened to me, too, and in a unique way. This was novel. Usually people asked me how my parents had gotten through it. She was the first to ask about me. Until then, I had not really been a figure in my own life story. I began to change that day. Slowly, I started consciously to claim ownership of the events in my own life, events that, I was beginning to understand, had had a profound impact on every aspect of who I was. I began to let myself think that what had happened was not only my brother's famous story, or my parents' overwhelming tragedy, but my story, my loss, my tragedy, too. Separate. I began to unearth my feelings, long suppressed, about the loss of my only sibling, the older brother I'd adored. I began to see that my brother's illness and death, that my role as the healthy, surviving sibling, wasn't just some bizarre anomaly amid the rest of society's shared normalcy. I realized that I might be part of a group whose largely uncharted experience has had no name, no movement, no language. Sibling loss. Our relationships with our brothers and sisters are key to understanding ourselves. Where they end and where we begin is often so seamless, the loss of a sibling can be a crippling blow to our understanding of who we are, and how we function and relate to others. I suspect that this holds true even in cases in which people have distant or troubled relationships with their brothers and sisters. "Closeness" is not, as we often presume, a prerequisite for connection, and the story of "intimate" relationships is not always a happy one. I've come to think of siblings as an actor might think of a backstory -- the imagined background of a character he's going to play. Those of us in the audience may never get a glimmer of a character's imagined history, but it's there all the same, informing that character's identity, behavior, and choices. Those of us who have siblings all have a "backstory." It is, therefore, all the more perplexing to me that the loss of a sibling has long been considered less significant than other losses. It's only in the last twenty years that it has been recognized as a trauma approaching that of the loss of a parent or child. Still, except for the efforts of a handful of experts -- many of whom have lost a sibling themselves, and have been compelled to do research to answer their own questions -- this idea is not universally accepted. Though an estimated 25 percent of Americans have lost a sibling, sibling loss is overshadowed by the parents' loss of their child. In the case of adult siblings, it is overshadowed by the losses of the surviving spouses and children. In greeting card stores across the country I have found, as often as not, bereavement cards for the loss of a parent, child, or pet, but not for that of a sibling. Hallmark, the leading manufacturer of greeting cards in this country since 1920, has always carried bereavement cards addressing the loss of parents, grandparents, and children, but did not start producing a sibling-specific line until the 1980s. When asked about my brother, I have repeatedly been faced with a well-intentioned person shaking his or her head sadly, saying, "That must have been terrible for your parents." Why is the loss of a sibling such an overlooked experience? Maybe it has something to do with the pattern of infant and childhood mortality that preceded the availability of antibiotics and modern public health measures. At one time in our not-so-distant history, surviving infancy and childhood was something of a feat. Perhaps losing a sibling was, in those years, so common an event as to have become invisible, a given, and for that reason overlooked. Or perhaps, as some researchers have speculated, siblings are more important to us now because, in the era of industrialization and birth control, we tend to have fewer. Perhaps iconic biblical stories, like that of Cain and Abel, have too narrowly drawn the emotional range of the relationship between siblings. And then there is Sigmund Freud, who thought of siblings only as rivals and elevated, above all else, the relationship of parents to children, a bias in thinking that is still pervasive in both professional and lay circles. Peruse any book in the child development section of a chain bookstore, for instance, and if you find "siblings" listed at all in the index, it will most likely be paired with the word "rivalry." Sibling relationships in childhood tend to be viewed as a parent's problem, not the unique, rich, and complex relationships that they often are, existing both within and outside the bonds parents have with their children. The nature of sibling relationships in adulthood is rarely considered at all. At one point, in search of experts to interview on sibling loss, I signed on to Profnet, an online service that connects journalists with a nationwide assortment of media-relations specialists, the people whose job it is to help connect reporters with sources. I'd used it before, with great success, for magazine articles. It works like this: You sign on to the site, fill in a little box with your name, fill in another explaining your project and your request, and specify how you'd like the fifteen hundred public relations agencies and universities who subscribe to the service to reply (fax, phone, e-mail). Every time I'd used it before, I'd checked the phone and e-mail reply boxes. And each time, I'd gotten so many responses that sorting through my e-mail had quickly become a chore, and my phone had rung off the hook. The payoff was that I'd always found the sources I'd needed, and quickly. This time, I said, "For a book on sibling loss, I would like to interview experts on siblings and sibling loss." I checked only the "reply by e-mail" box. The next day, the e-mails were starting to stack up, as usual, but they weren't at all what I'd expected. Within three days, I'd accumulated more than thirty e-mails from the media relations specialists, all of which read something like this: I read your query on Profnet today regarding your book about sibling loss. This loss has colored my life in ways I continue to uncover as I grow older. I would be interested in being interviewed for your book. I lost my only brother eleven years ago...Would be willing to talk with you. About a year ago I lost an older brother who I was very close to. It was a suicide and was very sudden and totally unexpected. I would consider being interviewed for your book. None of them referred me to experts. They all proposed their own stories. I would later discover that there were few academic experts on the subject of sibling loss. In fact, the people I heard from were the experts. Talking with them was like debriefing secret agents who'd spent years in a remote country. In all, I interviewed seventy-seven people, formally, for this book. One had not yet been born when her older brother died. One man had been seventy-one when his eighty-one-year-old sister had died. The rest were in between. The deaths had occurred as a result of a myriad of causes. I found many of the people I interviewed from the Profnet query. Some I got from listings in grief support group newsletters, others from the website of Dr. Jerry Rothman, who specialized in sibling loss, and who had lost a sibling himself in childhood. (Rothman died suddenly March 2002." His wife, Chris Rothman, Psy.D., has succeeded him as director of the Center for Grief Recovery Institute, which he founded in 1985, and maintains the institute's website.) I put out word among friends, acquaintances, and colleagues. Colleagues knew people. Acquaintances knew people. Friends knew people. People that I interviewed knew people. And all of those people knew people. The more I talked openly about the project, the more people surfaced with stories to tell. And they weren't just willing to be interviewed -- they were eager. In a bid to allay fears, I'd put together an information packet -- an article I'd written about sibling loss and my own experience with it, a consent form explaining the interview process (one to two hours, in person or over the phone, taped, anonymity an option), and a survey (for those who didn't want to be interviewed or were simply willing to fill it out). When I was contacted or contacted someone, my first step was to put the packet in the mail. But some people didn't want to wait for the packet; they wanted to be interviewed right then and there, sending me scrambling for batteries and blank tapes. Putting out the word for volunteers, as I had, created a certain bias in the group. Most of the people I spoke to said that they had had close and happy relationships with their siblings. These were people who wanted to talk about them. I spoke to only a handful of people who'd had difficult or distant relationships with their brothers and sisters, and they were by far the most skittish when it came time to be interviewed. Some people who fit this category said they wanted to talk, and then disappeared. My sense was that it wasn't that the loss of their siblings hadn't been painful and confusing, but rather that they felt even less of a right to claim the loss as a significant event, because their relationships with their siblings had been troubled. For these people, there seemed to be an element of shame involved in their hesitation to talk. Troubled relationships are not the ones that we expect to miss. But it's different with siblings. We learn to define ourselves, very early on, in relation to them. As adults, siblings perform this function even if they reside several states away and are almost never heard from. The way you perceive them and yourself in contrast is self-definition on a subtle scale that few of us have the time or inclination to evaluate. I suspect that those who didn't have close relationships with their siblings, in fact, may be just as stricken by their loss as those who did. That said, they're a group that has, for the most part, yet to be heard from. There are a number of reasons the people I spoke with were so interested in being interviewed. In some cases, especially those in which the loss was recent, people simply wanted and needed to talk about their lost sibling and their grief, having found little or no outlet elsewhere. In others, the idea of participating in a book, and possibly having their brother's or sister's name appear in print -- so that the sibling would still be in the world somehow -- was a motivating factor. Some wanted to share their story as a way to help others. Some wanted to compare notes with me and, via my interviews, with others. Many of those with whom I spoke had never told their stories before, and never been asked to. In many cases, I had the feeling that the interview was part of a therapeutic process. One forty-nine-year-old woman, who had lost her younger brother some three years before, said so. "I feel like this was an intervention," she said, after the interview was over. Others e-mailed or wrote to say that talking about the loss had propelled them to a new stage of mourning and healing. The act of acknowledging that the death of their sibling was their story, too, was healing. Because sibling loss is so often overlooked, the act of claiming the loss, and composing a narrative of how the loss affects you, is a significant step toward moving forward. I wasn't surprised by this, though it was interesting to see my own experience repeated. What I didn't expect was that this ongoing dialogue between myself and other bereft siblings would have a profound impact on my understanding of my own story. I thought I had done all of the hard work of grieving and understanding my brother's death before I started this book. It wasn't true. After I'd listen to someone tell his or her story, I'd sometimes end up musing about some aspect of my own that I hadn't realized or gotten to yet. It was often painful, and, equally as often, enlightening. My story, and my understanding of it, is different from when I started. I've told it, as best I can at this point in my life, in a way that follows the pattern of how I believe the loss of a sibling must be explored and integrated in order for healing to occur. By using the word "healing" I do not mean that the sense of loss of a sibling ever goes away, or that the sibling is dismissed as an important person in your life. I mean that the disabling grief is over, and we find a way to weave the lost brother or sister into our lives and go on. I have, as a result of all of this, developed an almost reverential attitude toward the power of storytelling, especially, as in this case, when the stories belong to people from whom we don't often hear. The stories that you will read here, shared by people who wanted to help themselves and others in the telling, paint a portrait of a profound, identity-shaping loss. It's my hope that these stories will affirm the significance of the loss for those who are newly reeling from it, those still trying to put a past loss into place, or those who simply want to understand. I hope that others find solace in them, as I did. Copyright (c) 2004 by Elizabeth DeVita-Raeburn Excerpted from The Empty Room: Understanding Sibling Loss by Elizabeth DeVita-Raeburn All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
