book reviews, healthcare

Repost: A review of The Empty Room: Understanding Sibling Loss by Elizabeth DeVita-Raeburn…

This book review was posted March 2, 2016. I read Elizabeth DeVita-Raeburn’s book about her brother, Ted, after writing a nostalgic post about David Vetter, the so-called “boy in the plastic bubble”. It appears here as/is.

Imagine watching your only sibling spend eight years kept in a room he could never leave.  Then, after those eight years have passed and your brother is on the brink of adulthood, he dies.  That’s what author Elizabeth DeVita-Raeburn witnessed when she was growing up. 

Elizabeth’s brother, Ted DeVita, had gotten very sick when he was just nine years old.  The son of an esteemed oncologist who worked at Bethesda’s National Institutes of Health (NIH), Ted was eating dinner when his father noticed huge bruises all over Ted’s body.  Because he was a cancer doctor, Dr. DeVita knew his son was very sick.  After six year old Elizabeth had gone to bed, Dr. and Mrs. DeVita took Ted to the hospital where they discovered that he had aplastic anemia.  It was September 6, 1972.  I was just a baby– not even three months old at the time.  Although Ted DeVita had the country’s best doctors and state of the art technology at his disposal, medical researchers still had a lot to learn about aplastic anemia.

Ted wasn’t immediately put into “The Room”, the laminar airflow room where he spent the last eight years of his short life.  His parents brought him home from the hospital on September 8, 1972.  Five days later, he was back… this time, to stay.  From age nine on, no one touched Ted without gloves.  He didn’t leave the room unless he was wearing a “spacesuit” that protected him from germs.  Everything in his room had to be sterilized, including his food. 

Ted DeVita was born in October 1962, completely normal.  He lived nine years of a relatively normal life.  Then, he was relegated to a sterile hospital room that he was not allowed to leave.  He was forced to endure IVs, endless pills, blood transfusions, bad hospital food, and never being able to touch anyone.  Ted DeVita was reportedly a very bright boy who would “put people through their paces”.  He was difficult to the professionals tasked with his care, yet eventually developed into a sensitive young man.  He was loved by most of the staff, other patients, and their families.  Unfortunately, because of who his father was, sometimes he was in the middle of political disputes within the hospital.  And, of course, because his situation was so extraordinary, sometimes the press invaded his privacy, too.

When Ted died in 1980, Elizabeth was just 14 years old.  Many people expressed how difficult his passing must have been for her parents.  Few people realized how hard the loss was for Elizabeth as Ted’s sister.  In her book, 2004’s The Empty Room: Understanding Sibling Loss, DeVita-Raeburn writes about what losing Ted was like for her.  She also interviewed many other people who lost siblings when they were very young and explores what that loss meant for them as they continued living.

I first learned about this book a few weeks ago, when I decided to blog about David Vetter, the Texas boy who was about my age and had lived in a plastic bubble.  I grew up hearing about Vetter in the news.  He was a year older than I was and had been in isolation since birth because he had a disease called SCID (severe combined immunodeficiency).  For some reason, I thought of him and did some research.  That’s when I read Ted DeVita’s story and learned about his sister’s book. 

Though I have three sisters who are alive and apparently well, I was interested in reading The Empty Room.  kind of knew someone in high school who had aplastic anemia.  Unlike Ted, he died within weeks of his diagnosis, also when he was a patient at NIH.  Also, my academic background as a public health social worker makes me interested in these types of books.  And, of course, as a child of the 1970s and 80s, I had seen The Boy In The Plastic Bubble, an unauthorized made for TV movie starring Diana Hyland, Robert Reed, and John Travolta.  That movie was loosely based on Ted’s and David’s stories, though neither of the families were ever consulted about or consented to the making of the film.  Elizabeth DeVita-Raeburn’s comments about The Boy In The Plastic Bubble are also intriguing for those of us who have seen the film.

I wish DeVita-Raeburn had focused her book on her brother’s story.  On the other hand, after reading her book, I can see why she couldn’t do that.  Toward the end of the book, Elizabeth explains what it was like talking to her parents about her brother’s death.  It was extremely painful, especially for her mother.  As she interviewed her parents, Elizabeth learned the adult version of her brother’s story.  She also gained some insight into what her parents did to help her cope with Ted’s illness. 

Throughout the book, DeVita-Raeburn writes about how children who have lost a sibling learn to adjust.  Oftentimes, they are encouraged to forget about the lost sibling.  Sometimes they change aspects of themselves as if to reclaim some part of the lost brother or sister.  She writes about a sister who had been athletic before her brother’s death, but became even more so afterwards, as if she wanted to preserve that part of him.  She writes of another sister who had become a star student, almost as in tribute to her brother’s academic ability.

DeVita-Raeburn writes about the Kennedy family, which has been famously shrouded in tragedies as much as it has its dazzling politics.  Apparently, John F. Kennedy had not had political aspirations before his older brother, Joseph, died in a plane crash.  He had taken on his brother’s interest and went on to become our thirty-fifth president.  When JFK was assassinated, younger brother Bobby determined to make a run for the White House until he, too, was killed.  Youngest brother, Ted Kennedy, was also a politician.  He settled for being a senator.

I was fascinated by DeVita-Raeburn’s commentary on the Brandt twins, Raymond and Robert, who had been identical twins in a family with eleven children.  Their parents were German immigrants who were devout Lutherans. Robert and Raymond Brandt grew up in Ohio, dressed the same way, shared the same bed, and were always together.  When they were twenty years old, they took jobs working as linemen for the electric company.  Robert died in a freak accident and his brother was left to carry on.  DeVita-Raeburn met Mr. Brandt, who later started a support group for twins who had lost their twin sibling.  Her recounting of the Brandt brothers’ story is very compelling.  I wanted to find out more about the Brandt twins after reading about them in The Empty Room.

Apparently, a lot of women who have lost siblings, particularly if the sibling they lost was an only son, keep their maiden names when they marry.  I thought that was an interesting point, though nowadays, a lot of women keep their names anyway.  Personally, I was happy to take Bill’s name for many reasons, not the least of which it would mean no one would ever call me “genitalia” again.  If you know my real name, you may know why a few people called me that. 

Elizabeth DeVita-Raeburn’s book, The Empty Room, is beautifully written and well-researched.  I appreciated her personal insight and research into the phenomenon of sibling loss, especially since it was a topic that hit so close to home for her.  The only editing glitch I noticed was when she referred to her brother’s “spacesuit” as a “Nassau” suit.  I think she meant NASA.  I also liked that at the end of the book, she included a reading list for those who wanted to learn more about what it’s like to lose a sibling.

I think this book is excellent reading for anyone who has lost a sibling, especially if they were children when the death occurred.  Aside from that, it’s also a great read for people who are public health social workers by training… or really, just anyone who finds these kinds of books interesting.  I realize that some people may find this book’s subject matter depressing.  I, for one, think reading The Empty Room made me wiser.  It also made me grateful for medical researchers.  Nowadays, no one stays in laminar airflow rooms or plastic bubbles for years.  Thank God for that.

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