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Dealing with Loss
Book Offers 'Path Through Forest of Emotion'

By Richard Currey

Photos by Ernie Branson

Elizabeth DeVita-Raeburn's presentation at Lipsett Amphitheater on Sept. 23 was described as a reading from and discussion of her new book The Empty Room: Surviving the Loss of a Brother or Sister at Any Age. The event was to be a look at both her experience and that of others in coping with the loss of a sibling. It was that — and much more: a charged and deeply affecting 2 hours marked by shared stories and powerful emotions.

Speaking to more than 70 people, DeVita-Raeburn discussed the background of her book — and her personal journey. At the heart of that journey is the recognition that sibling loss involves "not just the story of a brother or sister that's gone," as she said, "but that the survivor has an important story to tell. In fact, without claiming that story in some way — and learning to own it — I think it's very difficult to deal with the loss of a sibling."

Elizabeth DeVita-Raeburn
When DeVita-Raeburn's brother Ted died at the Clinical Center on May 27, 1980, he had lived in a laminar airflow "clean room" on 13 East for more than 8 years. Suffering from aplastic anemia and severe immune deficiency, Ted DeVita's illness and death was, for Elizabeth, the defining event of her life.

But it would be many years before she fully understood the life-altering nature of her experience.

Elizabeth's father is Dr. Vincent DeVita, NCI director between 1980-1988 and a clinical investigator at the institute for 25 years. When Dr. DeVita noticed the appearance of irregular purplish discolorations on Ted's legs in 1972, his trained physician's eye recognized the signs of a bleeding disorder. In short order an initial diagnosis was made — aplastic anemia. Ted was 9 years old at the time. He was admitted to the Clinical Center and the search for the anemia's cause was launched.

Aplastic anemia is a rare condition defined by an inability to produce new blood cells and platelets. It results in frequent infections (due to immune deficiency related to a lack of white blood cells), abnormal bleeding, weakness and fatigue. Although the condition can be triggered by toxic chemicals or certain drugs, the cause often remains unknown. This was the case with Ted, despite persistent and even extraordinary measures taken to learn the cause of his anemia (including the autopsy of the DeVita family parakeet).

Ted DeVita's hospital room was initially designed to protect cancer patients whose immune systems were compromised by chemotherapy. For a boy whose stay there would span weeks, then months, and finally years, it became far more than simply a hospital room. It was Ted's home, the place where he made his way through adolescence, practiced guitar, talked on the phone, watched TV and was visited often by his sister who herself came to think of Bldg. 10 as a kind of home as well.

Now a 38-year-old freelance medical journalist based in New York City, DeVita-Raeburn said that the years of visiting Ted familiarized her with the "feel" of a hospital. "I still experience a kind of comfort here," she said. "In fact," she added, laughing, "if any of my friends have emergencies that involve going to the hospital, they call me for support."

That comfort level, however, belies another aspect of sibling loss. "The surviving sibling," DeVita-Raeburn said, "can hide in that familiarity — and disappear. We survivors are educated from the start that the ones having a big problem are our parents, and, in cases of chronic illness, our sick sibling. Right from the start we're indirectly told: this is not your story. The prevailing idea is that the impact of the loss rests with parents." The net result, DeVita-Raeburn believes, is a crippling inability for surviving siblings to come to terms with loss in the context of their own lives.

NCI's Dr. Stephen Chanock also lost a sibling, in the same week that DeVita-Raeburn's brother died.

Another aspect of a surviving sibling's "emotional disappearance" was reflected in DeVita-Raeburn's inner obstacles to telling her own story. "I could tell other people's stories. I collected other people's accounts of losing a brother and sister, and wrote them without much difficulty for The Empty Room. But when it came to writing my own story — I was blocked.

"A critical factor in this process was that I grew up playing second banana to my big brother. Not only before he got sick, but certainly afterwards. I learned how to be quiet, to be self-effacing. It was all part of the dynamic in a family with one child who is critically ill."

When DeVita-Raeburn broke through into her own story, she discovered what she now refers to as "the healing power of storytelling. But to get there you must first claim your story as your own."

Using a literary form that fuses reporting as well as affecting memoir, The Empty Room creates a textured portrait of sibling loss as it considers the impacts of losing a brother or sister in childhood, in old age, abruptly in accidents or after prolonged illness. DeVita-Raeburn also explores the psychological shifts in families for children born after a sibling has died, as well as the profound sense of loss and disconnection experienced by a surviving twin.

Dr. Alan Schechter, chief of the molecular biology and genetics section at NIDDK, introduced DeVita-Raeburn's appearance with remarks about the growth of palliative care at NIH and the milestones (including cases like Ted DeVita's) toward what is now an integral aspect of NIH's clinical services. DeVita-Raeburn then spoke about the genesis of The Empty Room before reading from the opening pages of the book to a rapt audience.

Attendees also heard remarks from Dr. Stephen Chanock, a pediatric oncologist at NCI who lost his brother to cancer at NIH in the same week that Ted DeVita died. Chanock echoed DeVita-Raeburn's remarks about a surviving sibling's trauma being trivialized and shunted aside. A medical student at the time of his brother's death, Chanock recalled an attending physician who advised him to "remember to take care of your parents because they're going through a tough time." Chanock noted the casual assumption that his experience in losing a brother was somehow less traumatic or less important than his parents' loss of a son. "Different, perhaps," Chanock remarked, "but no less significant or painful."

Also speaking was Dr. Ann Berger, chief of pain and palliative care at the Clinical Center, who described the current palliative care services available at NIH and detailed the varying tactics and approaches her service offers. Her slides included a number of photographs of the palliative care team in action, including pictures chronicling the rounds of the team's famous "tea cart."

DeVita-Raeburn greets visitors and signs copies of her book at a table outside the lecture hall on Sept. 23.

Questions from attendees struck a wide range of issues and concerns, from simply sharing their own experiences as surviving siblings, to specific queries from health care providers interested in ways to better serve their patients' needs. A physician asked for guidance on talking to siblings in the process of losing a brother or sister. Another individual stood to relate the general lack of services and support available to her when her sister died several years ago.

When a third person asked what friends can do in situations involving sibling loss, DeVita-Raeburn reminded us that there is no way to "make it better" or literally improve anything about such challenging circumstances — but surviving siblings can be advised to remember the importance of their own stories as both tools for healing as well as remembrance.

"For me," DeVita-Raeburn said, "and I think for a lot of siblings, it's a matter of knowing the story. For those of us who lost their sibs when they were young — many people have mentioned this to me — they don't know, at least not exactly, what the story is. They're not sure what the details were, what the progression of events was. So how can you claim that story as your own?"

But whether a sibling loss happened when one was too young to recall events, or an adult brother or sister was lost suddenly in an accident, DeVita-Raeburn returned to her contention that it's all about "claiming the story as your own. It's understanding the pattern inherent in the disparate facts you hear from parents and other family members and doctors and nurses, and allowing that information to transform your understanding of what you went through."

The Empty Room illustrates in a way rarely done — certainly not often with DeVita-Raeburn's lyricism and eloquence — a fundamental contradiction in sibling loss: you cannot speak (or write) of your grief. And yet it is that first spoken or written word that might open a path toward coming to terms with loss. "Without that first word," DeVita-Raeburn said, "there is no understanding, no path through the forest of your emotions."

The Empty Room tells us that emotional journeys, journeys of the heart and soul, can and will find their way home again — but arrive stronger and with greater understanding.

As Chanock said, "I deeply appreciate Elizabeth's brave and daring book. This powerful work is required reading for anybody who takes the practice of medicine or the delivery of health care seriously."

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