The Empty Room: Understanding Sibling Loss - Softcover

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 ...