Elizabeth Devita-Raeburn: Death of a Sibling

HEALING THE GRIEVING HEART
Death of a Sibling
Host: Dr. Gloria Horsley
With guest: Elizabeth Devita-Raeburn
July 7, 2005

G: Welcome to Healing the Grieving Heart. There are no simple or quick solutions to dealing with death. Each one of us is unique and special as are our relationships and our responses to loss. Healing the Grieving Heart is about nourishing the heart and removing the blocks that slow the miracle of renewal. I know you may be struggling, sad, and confused, missing a special child in your life. You may be a bereaved sibling feeling unacknowledged, lost, and wondering how you fit in. You may be questioning your right to grieve when others tell you that you must be strong for your parents. Have faith. My guest today has been there, and she is here to tell you that she has made it and so can you.  Remember that just getting out of bed, going to school, the office, or working in the home is an accomplishment. Today our topic is sibling loss, and I’ll be introducing Elizabeth Devita-Raeburn, Ted’s sister, and a very special guest. I myself am not a bereaved sibling. I’m the youngest of four and have three living siblings so I understand the literature but I don’t consider myself an expert on the topic. However, I’d like to start our show today with a letter from a bereaved sibling who is an expert on the topic. It’s my daughter, Heidi Horsley, and we have written a book together called Making the Best of the Worst, a Book of Hope for Surviving Teens. In the book, Heidi has written a special message to teens.

Dear Teen,
When I was 20, I was awakened in the middle of the night with the news that my 17-year-old brother and cousin had been killed in a car accident. In an instant, my life was turned upside down. I couldn’t believe this was happening. My brother was a big part of my life and I assumed he always would be, but suddenly he was gone. That I was never going to talk to him again, see him smile, or hear him laugh was unbearable. I desperately hoped it was all a bad dream, but it wasn’t. People told me I needed to be strong for my parents. Because I didn’t want to cause them any more pain, I didn’t let them see me crying. Since I hid my grief, everyone thought I was fine, but I wasn’t. I was sad, angry, and lost. I also felt incredibly guilty that my two sisters and I were still alive while my only brother was dead. I felt as if nobody understood what I was going through or how much pain I was in. Those were dark days and I often wondered how I would get through them. No one could have told me that the pain softens over time. I wouldn’t have believed it. Nobody could have told me anything at that point in my life. I felt so alone. Surprisingly, though, as the months and years passed, I did start to feel better. I’ve never gotten over Scott’s death or stopped wishing he were still alive, but I have learned to live without him, as I know he would have wanted me to do, and even though he’s not here for me, he’s still my brother and I’ll always hold a place in my heart. There is hope. You will laugh again, love again, and find happiness in your life.
Sincerely,
Dr. Heidi Horsley
I’m sure today, our guest, Elizabeth Devita-Raeburn, Ted’s sister and author of The Empty Room: Surviving the Loss of a Brother or Sister at Any Age, is going to be very enlightening for all of you bereaved siblings. Elizabeth does not only have the personal experience, but she is a real expert in dealing with siblings who have lost children, has interviewed 77 for her book. She also has a Masters Degree in Science Writing from Johns Hopkins University and a degree in Public Health from Columbia. She has written on science and health issues for both the Washington Post and Harpers Bazaar. She lives in New York City with her husband, writer, and author Paul Raeburn. Hi, Elizabeth, welcome to Healing the Grieving Heart.
E: Hi. Thanks for having me.
G: I really enjoyed reading your book, The Empty Room. I received so many insights from it for myself regarding the loss of a sibling. It was so interesting hearing about the story of your brother, Ted’s death and his life, and also hearing the voices of the 77 bereaved siblings that you interviewed. In fact, in reading your book, it gave me an opportunity to discuss my son’s death with my three daughters and it turns out, what came up was that my husband had also had a brother die at birth. It was never acknowledged by the family, so it was quite a discussion, and I’m sure this show is going to be a great benefit to our listeners. It has already been to me. And I’d like to start the program by having you share with our audience the story of Ted’s life and I just wanted to say, because so many people are familiar with this, that his story was combined with another boy’s story in 1976 for a made-for-T.V.-movie called The Boy in the Bubble starring John Travolta, and I understand he had aplastic anemia. You can talk more about this. But I would love to have you tell us about the events that led up to Ted’s going into the hospital and describe how he lived. You do such a good job of it in your book. Talk to us about how it is for siblings.
E: Okay. Well, it started when I was 6, my brother was 9-1/2, and it started with some bruises that he just seemed to be acquiring. I don’t remember it exactly. Part of the story is gleaned from my mother, but she tells me that we were sitting at the dinner table one night and that she looked down at my brother’s leg. This is September and he could still wear shorts. And just commented well, will you look at that, he has more bruises. My father is an oncologist so he works with blood diseases all the time.
G: I understand he was head of the hospital there, the oncology department.
E: Yes. He eventually became director of the National Cancer Institute, which is in Bethesda, Maryland. At that time he was head of a branch of oncology, but he was familiar with the bruises caused by blood diseases, which tend to be a lot bigger. I describe them in the book as like spilled pots of paint under the skin than what your garden variety bruises are. And he looked down at my brother’s legs and knew. He didn’t say anything at the time. He just said something like maybe I’ll just bring him into the hospital just to check him out. I think he brought him in after dinner and I guess by the next morning, they had a diagnosis, which was aplastic anemia. It’s a really rare disease. You’re more likely to be struck by lightening than to get this disease. And what happens is that the bone marrow, which is at the center of our bones and produces white blood cells and red blood cells and all the things that help us function and fight off infection has just stopped functioning. So it often is insidious and it encroaches on you and by the time people are diagnosed are often pretty far advanced. And that was the case with my brother, he had almost no immune system by the time he was diagnosed. And there was no treatment so the only thing they could do was just give him blood transfusions and platelet transfusions.
G: But they had hope at first that he might just recover from it, right? They had an idea.
E: There were some cases of people spontaneously recovering from the disease, so that was the hope. Barring that, they could give him transfusions and that’s what they tried to do at first just to keep him at home and do that. And then a week after his diagnosis, I guess, he woke up in the middle of the night with a fever and my parents panicked and brought him to the hospital and there was one other alternative which was a sterile bubble room that had just been invented a year or two earlier and they used it for cancer patients who had been getting big doses of chemotherapy and whose immune systems were temporarily knocked out. They would put them in there for a couple of weeks until they could rebound, and so they thought that was the only thing that they could do to keep him safe was to put him in this room for a little while until his immune system came back.
G: The little while is key to that. They just thought it was going to be a week or two or something.
E: Right. And it turned out be 8-1/2 years and he didn’t make it out. Our family life from then on revolved around the hospital. I got up in the morning and went to school and my father went to work and my mother went to the hospital and hung out with my brother and then at 3:00 she came home and we had dinner at the house and after that we went to the hospital. The bubble room took up half of a regular hospital room and it was divided in half by a plastic curtain and so we would be on the other side and that other side became our family room. We would sit there and read and watch T.V. and talk and listen to music and that just became normal life for 8-1/2 years.
G: And your dad, was he out by Ted, was he at the hospital there around him?
E: I’m not sure how much he saw him during the day because he was pretty occupied with research and seeing patients. I know he was around and probably stopped through a lot but I don’t know that it was his regular pattern to always be popping into the room during the day.
G: Tell us a little about Ted. He sounded like quite a character, reading the book.
E: He was a huge character. He was an eccentric. He was the kind of kid, my mother used to say, he’d go off to school and she’d wait for him to come home and she’d get worried because school would have been over for an hour or something like that and she’d seen no sign of him. We only lived about a block and a half away from the school, and she’d go to look for him and he’d be stooped over at the side examining a bug or a stick or something. He just could get absorbed in his own world. He wasn’t a boy’s boy. The type who was out playing sports and sort of muscling around with other kids. He was introverted and artistic and thoughtful and creative. He wrote a play when he was 8 or 9. He was very interested in expressing himself. Like I said, a bit eccentric in that sense which turned out to be a very good thing because to be isolated in a room like that, if he had lived for sports or something like that, I just don’t know how he would have managed. But because he was such a resourceful person and so creative, he actually managed to grow there in interesting ways. He became a really good writer, a really talented musician, got involved in CB radio and talked to people in the airways. He was just an interesting kid and he attracted a lot of people around the hospital who would first be curious about the situation and then they would get interested in him and so people just started to flock around and filter through his room. And it’s the same thing where astronauts and actresses and people like that who would be doing this nice thing to go visit this sick child and then they would get interested in him and start coming back because they so enjoyed his company.
G: Now, did you ever feel like he got more attention than you did even in the bubble or was that a big thing for you?
E: Oh, yeah. I’m not sure how consciously I was aware of it or that it was perhaps not a great situation. But I’m very aware looking back that I became the silent observer. I was, my mother said, the outgoing one. But I became very quiet. I watched. I describe myself as the prop person to my brother’s center-stage performance. And so it all revolved around my brother and I was sort of supporting that whole thing and it was also required of me basically in this kind of circumstance because he needed so much and his situation was so dire that I just sort of not express any needs, not get angry, not get upset. I just always had to be okay so that everything could be focused on making this enterprise that we had going in this room work.
G: So, we need to come up on break now, but when we come back, I would like to talk a little bit about your brother, your relationship with him, and we?ll talk about his death and how that was for you as a sibling to carry on. What happens when a child feels like the special one has died and they’re left. We’re coming on a break now and I’m your host, Dr. Gloria. Please stay tuned to hear more about sibling loss with bereaved sibling, author and writer, Elizabeth Devita-Raeburn. Elizabeth, when we went to break, we were talking about the fact that you kind of became the quiet one and Ted was kind of the head actor here. He had an auto-immune disease. Is that why you called it an auto-immune disease?
E: There are a lot of reasons aplastic anemia can happen. One is you can be blown out by radiation like a Chernobyl-type thing and the other theory is that it’s auto-immune and your body attacks the bone marrow and stops these cells from forming so it’s not entirely certain that’s what happened in his case, but more and more they think it’s auto-immune.
G: So then tell us about Ted towards the end of his life.
E: Well, by the time he died when he was 17-1/2, and I always include the half because as those of us who have lost people who died young know, six months is a very long time in a short life, he had just really blossomed into a really interesting guy. He couldn’t go to high school. He had tutors, but he was writing for the high school paper, and he would agonize over his writing and was very into his music and had gotten very disciplined about schoolwork, which has not always been the case in his life. And he really did not appear any sicker than he had. I didn’t know this at the time, but apparently if you get repeated blood transfusions over a long period of time, the iron can build up in your heart and damage your heart and enlarge it. And I think that’s what was gradually happening to him though no one was particularly aware when a crisis might come or if a crisis might come with that. So he seemed fine but his body was beginning to show the wear of all of these transfusions. So I was actually on an exchange trip to Scotland when he collapsed apparently while he was eating dinner one night and they didn’t tell me. I got back about a week later from the trip and a doctor met me at the airport. We took a flight to NIH and I got to see him. But it was really very sudden. So he went, from me, to seeming fine in the sense that I had known him for the majority of my life, he just lived behind this curtain, to suddenly being in a state of collapse and possibly dying. So it’s funny, people talk about well, if someone’s been sick and then they die, you’ve at least had some preparation for it. And I think that was not so in my case, and I suspect it’s not so in the case of a lot of people who particularly were children because you’re not given the information. So for me it was extremely sudden despite this because I had lived with this state of normal for so long.
G: That’s a very good point about how kids aren’t told and then it is sudden for them because working in a hospital, I found that you always have hope. They say with life, there’s hope. You hope that they’re going to make it. It is a surprise when they die. It is such a shock for everyone and maybe the adults do have a little bit more preparation that it may be a possibility.
E: But, I have to say, to the extent that I agree with you, I think you always have hope no matter what someone is going through, so it is a shock. And I actually take umbrage when people say well, at least you had this time. Your daughter, Heidi, and I have talked about the fact that phrases that begin with the words “at least” should be banned. If you’re thinking of responding to someone who has had a loss or someone who has a chronic illness or something with the phrase ”at least” and then saying something, stop and think twice before you say it because there are no “at leasts” in these situations.
G: Can you talk a little about siblings being the unacknowledged mourners?
E: Yeah. Well, I’ll start with myself and then I’ll expand. At my brother’s funeral, I was standing by his open grave, as his casket is right there. The funeral is over and people are milling around and I’m standing by myself dying inside just wanting to jump into the hole myself. I just cannot imagine life without my brother. He was my older brother. He showed me how to navigate the world. I didn’t know how to function without him. And this, I’m sure very well-intentioned woman walked up to me and grabbed me by the arm and sort of leaned down and whispered, “you’re going to have to be very good because your parents are going through a lot.”  It was a horrible moment because it made me feel so ashamed that since I had thought about myself for a moment, and she was teaching me as an adult how I should be feeling. My feelings were wrong. The thing that was horrible about it is that it was repeated over and over again in different contexts and different words but the message was that no one expected me to be affected by this loss and that it was really all about my parents and my role was to be fine for them, so I just learned to stifle all my feelings and freeze and go numb. When I started interviewing siblings, I have to say, that is the most common experience that I heard from people who were ranging from who had never known their siblings were born after them to people who were in their 50s, 60s and what not, that people just did not see that they had experienced a profound loss themselves and were very much in need of support, too, and that because it wasn’t acknowledged, they suppressed their loss and became a support system for everybody else and if it was in childhood, they supported their parents and then the way they supported them was by not talking about it and by being fine and not having it. If they were adults, then the way they dealt with it was to suppress their feelings and then take care of their parents and if the sibling was married or had children, to take care of those people as the primary mourners. So the sibling was always sort of last place.
G: And then they get what you were talking about, shielded space or closet space where they close it up.
E: Right. They close it up and you almost don’t know it’s there. It’s interesting if you talk to people who lost as children, it gets so submerged, so compressed into this little nut in their psyche that they don’t even know it?s there. You talk to them and I’ll be talking about the book or something and it’s like this thing happens, they go, oh, yeah, I lost a sibling.
G: The frozen grief that you were talking about.
E: And for some people what happens especially again if they lost in childhood and there was this major drama and the family was affected and all that, but sometimes other losses later in life, 10, 20 years later, will trigger that past experience.
G: Yeah, the unresolved grief. Can you talk a little bit about the things that came up for you, like difficulty in school or things that might come up for people, drug or alcohol abuse, nightmares. I know you talked about all those. Could you tell our listeners a little about that?
E: I can go through a long list of things for me. Alcohol abuse and experimenting with drugs is common in adolescence but I think I was after them for a different reason. It wasn’t just rebellion. It was about numbing. So I was looking for that. I was skipping school. All the while my parents thought I was the perfect child because I couldn’t. It wasn’t even like an effective rebellion because those who are rebelling are demonstrating to their parents that they’re not doing what they would like but for me it was like I had to have the perfect exterior but meanwhile I was numbing myself and sort of destroying myself bit by bit with these things. Depression, numbness, a removal. I had a lot of psychosomatic stomach problems. In college later I became sort of eating disorder type things so I would say I was first experimenting with anorexia and then some bulimia and then some exercise stuff.
G: So one of the things we’d like our listeners probably to hear here is make the connect. There may be a connection between what you do and your sibling loss.
E: Absolutely, and I think someone at the recent Compassionate Friends conference pointed out that someone might show up in therapy complaining they’re dealing with an eating disorder, they’re dealing with alcohol, or something like that, and how often therapists or people around this individual fail to think that what might be behind that. They treat it as an illness but they don’t see the things that might be triggering behind that so if your therapist. I encourage anyone to always take a history and when they do to ask specifically about sibling loss.
G: However, one of the things I know Heidi has said that she went to therapy after Scott died. Now this therapist knew her brother had died and rather than start with that, he started with a family history, and she left. She never went back because she was in crisis at that moment over the event so it wasn’t a past event. I hear what you’re saying if you kind of covered it over and they need to take a history, but, on the other hand, if you have a recent event and they know it, you’d better start there. Could you talk a little bit. Did you see yourself taking over any of Ted’s roles for the family?
E: Yeah, I think there was. My brother, I had let him be the smart one, the intellectual one, the brilliant one and all of that and I had to sort of coast along not drawing attention to myself and not even wanting to succeed too much because I didn’t want to overshadow him, so I just became more invisible and suddenly he died and whatever hopes my parents had attached to him went with it, but then they turned to me and I was suddenly supposed to be the center stage performer so I needed to be as funny as he was and as successful as he was and now the person who might have gone to medical school like my father was no longer there. They needed someone to succeed. They needed it to go well. They needed everything to fall into place and all the expectations and they all sort of focused on me because I was the only one left. And I struggled a lot with that and then again not consciously but sort of in a thrashing about way. I tried to do pre-med in college for awhile and I think had this not happened, that might have been a route I would have taken, but I was so overwhelmed by the idea of the pressure of it all and I was spending the rest of my life in a hospital as I had spent the earlier part of it that I just couldn’t deal with it.
G: Even though you’d like to please your father and go into his profession, it would be difficult.
E: Right. It was just too much and too much unresolved and I just sort of opted out of it and became an English major which was actually fine for me because I loved that, too, but there was a sense of guilt about that and not doing that, and I think my father sort of had more of a need maybe to see me start ticking off accomplishments right when I graduated from college and that kind of thing and then the career path I was on as a writer was fairly serendipitous. You know, one thing leads to another. There’s not this sort of concrete plan.
G: We need to go to break now, but after our break, I’d like to talk to you about siblings. How they grapple with whether or not it’s their loss to claim. We were talking to Elizabeth Devita-Raeburn about her brother’s, Ted’s, death. Ted lived in, what would you call it, a germ-free environment?
E: A sterile bubble room for 8 and a half years.
G: And Elizabeth spent a great deal of time there and then her brother died and I know that you then worked at the hospital.
E: Yes. I did a lot of volunteer work I guess starting shortly after his death. I did an internship there when I was in high school and then I worked there a summer after college working in the labs basically.
G: And I was thinking about that. Was that a way for the medical community to hold you and help you? And the staff, a way for them to stay close to Ted or help your family? I was wondering how you would look at that?
E: I don’t know what it was from their side. I think partly it was that we had known these people for 8 and a half years and they were family. I remember seeing them all the time so it may have been a sense to me that I wanted to stay connected. And that this was the environment I knew. I knew that environment much better than I knew normal environment. I was comfortable there in an odd sort of way. I’m still strangely comfortable in hospitals.
G: In a different way, I’m sure than other people.
E: I feel very at home there. It’s the kind of place where other people’s blood pressure goes up when they go in and mine goes down because I know these places.
G: Is that good or bad or is it, good or bad, of course, pejorative words, but what would you say it is for you?
E: It’s fine. I find it sort of an interesting facet of myself. It’s come in handy at times when I’ve had to go in for myself or friends who have had crises and they need someone solid to be with them and they call me and I can go and hang out there with them and sort of exude a little bit of calm that they can hang on to. So in that sense, it’s been a good thing. But otherwise, I don’t think of it necessarily as good or bad, it just is a piece of myself that it’s a remnant of that experience.
G: Because I’m sure a lot of our other sibling listeners will have had the same experience as you spending a lot of time with siblings in and out of the hospital. So I wondered could you talk about siblings grappling with their loss to claim? I think that?s so interesting.
E: This came about because as I was writing one chapter of my book and I told what happened to my brother and sort of my parents and all that kind of thing. And then as I tried to sit down and write my own story, I couldn’t write it. I had total writer’s block, could not start a sentence with the word “I” and finish it, and I realized that on some profound level despite all the work and research I had done and yes, it happened to me too, that I didn’t really believe it. But it was my story to claim. It wasn’t mine. And it was really only in doing more interviews with other people and in prompting them to claim the story by telling it to me that I was able to even begin to broach this, and I realized that this simple act of telling the story and saying it happened to me is such a profound thing, it’s overcoming this block of what we’ve been told all along that it’s not ours. And you can’t mourn unless you claim the story. Telling the story became a huge step in healing so for me to actually actively write it and for other people to tell me became a much more important event than any of us realized, I think.
G: Could you talk a little bit more about not being able to mourn unless you tell your story?
E: I think you think you know the story and you walk around with it but there is something specific to you looking at how it happened. You picking the significant event. You putting orders in them and making sense of them that makes you inhabit your story differently. So I think just the act of doing that is an active way of claiming a story that just walking around knowing that your brother died is not. I think that is a beginning process toward bringing yourself to acknowledging that this happened to you and that it’s yours to mourn and then allows you to follow that path.
G: In your book, a woman named Laura tried to get information from her aging mother and finally realized that she’d have to deal with this sibling death relationship on her own because all the other family members had died and her mother would not give her that information and so she had to do it on her own. It was interesting to me how you talked to her and how she was able to do that. Do you have any suggestions for people who can’t get information on their sibling’s death or the story?
E: Well, in her case, she had nothing because she had only been one and a half when her sister died. Her sister was hit by a car in front of their home and she had no memory of it. And that’s a commonly overlooked area. People who weren’t old enough to remember a sibling who died absolutely experience a loss but she had nothing to sort of root it in only a picture or two. So what she did was sort of construct through other people in her life who she thought her sister would have been. And through a sister-in-law who was very important to her and that kind of thing and found that that was enough for her. For other people, there might be things they hadn’t looked for. I ultimately was able to get my parents to talk.
G: Tell us about your story. It is so interesting. Your parents would not talk. First of all, you didn’t want to talk about it, right. Or the whole family was frozen, let’s put it that way.
E: The family couldn’t talk about it at all.
G: Then you decided after what, some therapy and being older? What triggered you to decide, do you remember?
E: I don’t remember a specific trigger. I just remember feeling like I needed to do this and I needed to know. It also became clear as I was working on the book how much information I lacked. I was 6 when my brother got sick and 14 when he died and I’d just been given so little information that I was still describing his disease in the terms in which had been described to me when I was 6. So I first started actually by reading my brother’s medical records which my father offered to me, I think in lieu of telling me.
G: You pursued them, though. You pursued your parents. He didn’t suddenly offer them. I love the story about wasn’t it Thanksgiving? Was it Thanksgiving dinner where your mother jumped up from the table and started picking the dishes up? That was quite a story.
E: We were sitting at Thanksgiving and there was another couple there and they innocently asked me how the book was going. My parents were very proud that I got a book contract but they really didn’t want to know anything about the book and we never talk about my brother, certainly not as a threesome. Occasionally, he would come up with my mother, but always the same sort of safe stories. So I never got any new information and so I was telling these people that I was having a difficult time because I had lost memory because I had so frozen and suppressed it and because I had been young and that it was difficult. And my father said, well, you know, I have all these records on microfiche. I don’t know why I have them, but I got them and they’re there if you want to read them. And he says there might be something useful in there like nurse’s notes and that kind of thing and my mother just got furious and leapt up from the table and you know, what do the nurses know, and that kind of thing. I just think it was telling a story that had not been told and we all each had our own grip on our own piece of this and it was maybe threatening to her to feel like I was ruffling, had worked in its own weird way for 20 years.
G: As a nurse and having worked in a hospital, I was very curious as to whether she might have been a little bit angry with your dad just in terms of the medical community and the whole situation because whoever thought what happened would happen? This story is not a story of a boy being taken to the hospital and being put in a bubble for 8 and a half years. That’s not the story. The story is the story of hope that we’ll find something.
E: I don’t know if she was angry at the nurses or at my father’s medical community. It certainly was difficult for my father. I can’t imagine what she might think and she hasn’t told me. I can imagine for my father and he’s intimated this that it was extremely difficult to be an accomplished oncologist who had cured a lot of other people of disease but wasn’t able to save his own son.
G: I know one of the things you said in the book, too, which was interesting, was before this dinner you had called your father about it and he hung up on you.
E: Oh, yeah. There was some detail about my brother’s death and he said I can’t talk about this and hung up.
G: Your perseverance is an amazing thing.
E: I needed it to write it so ultimately what happened was that I got to the last chapter of the book and I said, and I just knew that the last chapter had to be them speaking, at least I had to ask them because there had never been any speaking about my brother and if they said, no, I won’t talk to you about it, well, that would be a statement in the last chapter about the nature of what happens to families with this kind of loss, and if they did speak, then it would be a gesture of hope and it would be interesting and who knew what might happen and my father agreed readily and we spoke. It was cute. We talked in a restaurant and toward the end of it, I was winding it up and he said well, do you have any more questions, this isn’t so bad. My mother at first said no and then she sort of agreed and it got put off a lot and finally I called her and said I need to interview over the phone now because I have to finish this.
G: Oh, I thought that was great, that you thought maybe it would have to be over the phone.
E: I could tell she felt a little bit cornered but then she agreed and I learned stuff that I’d never known about my brother. It was amazing. And I have to say it was not that it’s been repeated since then, but it was a huge step and now my brother’s name is not mentioned often but it does come up and it comes up in conjunction with stories that I haven’t heard before. So it did loosen something.
G: Right, of course. And your perseverance was, as I said, amazing. I’m just so impressed about how you took a hold of your story and claimed it for yourself and persevered.
E: Well, thank you.
G: It’s really wonderful. Were there other family members that were able to chime in? We need to take another break right now, so after the break let’s talk more about this topic. Please stay tuned for more on sibling loss with Dr. Gloria and Elizabeth Devita-Raeburn, Ted’s sister, and author of The Empty Room: Surviving the Loss of a Brother or Sister at Any Age. Elizabeth and I were just discussing during break about the Compassionate Friends’ conference and I just wanted to share with you what we were saying is the fact that it was kind of an amazing thing. Elizabeth, do you want to say what you thought about being a sibling and being there at the conference?
E: I was just stunned that other siblings had the experience of being able to be around other siblings who shared that loss. I had felt so alone when I went through it and just made me imagine what it would have been like to know that others had gone through this and that there were commonalities. It would have made a huge difference in the way that I think I was able to process that loss in my life. So I was sorry it was not available to me at the time. But it was neat to see it now.
G: Elizabeth, I wanted to ask you, and after this, I’ll see if there is anything you want to tell us before we end this show. I also wanted to ask you, it seems like therapy might have been part of what moved you to decide to do more about Ted’s life and reviewing it, and getting information from your parents. I wondered if you had any thoughts on if you did get a therapist, how you would find them, and what you would need, and that kind of thing. Do you have any thoughts on that?
E: I’m not a professional. The way it happened for me was that I had a friend who had a therapist that she very much liked and respected and she asked her for a couple of names and I called I think the first person on the list and had a conversation with her and it was okay and I went and it just turned out that it was a fabulous fit and that she got it right away and that she just assured me that it was a process that could work if I committed to it.
G: I like what you just said. A fabulous fit and it was okay. And to our listeners, you do need to find that fit. You do need to find somebody who can sit with bereaved people.
E: Right. And not try and hurry you along. I have talked to people who had bad experiences with therapists who didn’t get the loss or told them they should be over it. Most people are pretty quick to see that as a sign to move on and find another therapist.
G: And don’t be afraid to do it because it doesn’t work. It’s like hiring anyone else. Also, I wanted to ask you, would you recommend that people keep their medical records? Would you know how to go about it or would you have any thoughts about that since you’ve worked in a hospital? Medical records for siblings.
E: I don’t know, actually, because my brother’s were just handed to me. I’m not sure how one would go about it. I was going to offer a few further suggestions as far as people trying to find the information about what happened because those who lost in childhood, the most common thing I heard from them as adults was to this day, I don’t know what happened. So, you have to know what happened. So medical records if you can get a hold of them, newspaper accounts, and also other relatives or friends who were around at the time who may have felt that they were imposing or would have been to push their stories on them, but have a lot of memories of what happened and might be able to help. I’m actually just now discovering some of those people who have read the book who have come forward and told me things that I never knew.
G: You wouldn’t have to write a book. You could be telling the people you’re doing a memoir if you’re a writer for a family history. And writing is certainly a way to inquire.
E: But, honestly, a lot of these people if you just called them up and say I never understood what happened, I need to know, can you help me? My parents won’t talk about it or can’t talk about it or they’re no longer with us, or whatever. But you may even find nurses and doctors who were there at the time.
G: And just don’t be afraid to ask.
E: Just go for it and do it because you need the information.
G: And, as I said, you’re a wonderful example of pursuing your parents and letting them know that you’re not doing it to blame. You’re doing it because you need the information. I think that’s the key thing. I need the information.
E: Once they understood that, they were very responsive and even though it was difficult for them, they really wanted to help.
G: I notice one thing that you said was that your father immersed himself in your work and your mother immersed herself in you.
E: Yeah, which was difficult especially at 14. That’s when you’re trying to get away from your parents. My mother had a, I don’t want to use the words death grip, but she had a pretty strong grip on me at that point.
G: Because she probably was afraid.
E: She was afraid and she needed another child to invest herself in. She had spent almost every waking minute focused on my brother and suddenly he was gone. Her whole raison detre had disappeared.
G: Now do you have any thoughts about, you’re the surviving sibling now, do you think it’s any easier if people have other siblings, or do you think it makes no difference.
E: Not necessarily. I’ve talked to people who have had other siblings but they lost the person who was their best friend. You just can’t replace that. All siblings have different relationships with one another. Then some people become closer to other siblings and then that’s a blessing for them. But other people, not only don’t get closer to other siblings, but end up more estranged. So I think it really varies. There’s a wanting that you will get closer to other siblings but I don’t think that always transpires much to many people’s disappointment.
G: One of the lovely things with Compassionate Friends is, I think, their sibling program and these teens are together. I noticed a few of them were the surviving sibling and getting together and talking about it was very, paling around with these kids was great, and emailing them, and connecting back and forth. So you mentioned also Grace Christ’s book, Healing Children’s Grief, a Sloan-Kettering study, and one of the things for hope for our families, I think you mention it in terms of the fact that you don’t mentally. It’s how you respond has something to do with developmentally. But Grace does say from her study that 85% of families return to the pre-death functioning, that was after the death of a father. So families do go on in some ways. What about grandparents, do you have any thoughts about them? Or cousins or anybody who can help or any comments about them regarding sibling loss?
E: All those people are going through their unique loss as well and they should be acknowledged not to just put them again on a step beyond siblings. I don’t like this hierarchy of grief. I think everyone has a unique experience of the loss so there’s that. But if there are other friends, family members, who are wondering how they can support the sibling, I think one thing is to support the parents because they’re having a hard time functioning and helping them to acknowledge that they can’t do everything for the other children. That they’re not able to parent right then fully and that’s okay and then step in and be supportive for the other siblings whether it’s just hanging out with them and letting them know that they see them. Letting them know that they know their experience is unique and they can’t understand it. If they want to talk about it, they’re happy to listen. So I think that can make a big difference. The fact is, parents are just, grief is such an overwhelming experience for each individual and so for someone to be intimate to that and then expect it to be a fully present parent for other children who are needy I think is just above and beyond. You can’t do it. So the thing is that people around these people need to step in and help these families.
G: I also think that we need to think in terms of mother and father or stepfather or whatever rather than parents as a unit because they are up and down and grieving differently. There are a huge number of expectations on everyone. The kids have to go back to school. Everything has to happen. Well, it’s time for us to close our show, and before I close, Elizabeth, I wanted to say how impressed I am with your courage and your journey in healing. It’s really wonderful, and I hope everyone will pick up this book and tell other people about it because it is a wonderful journey. And I’d also like to thank your parents, Dr. and Mrs. Devita, for giving other parents the message that it’s never too late to tell their story and they did. It was through your perseverance that they did, and that’s a wonderful example to people. If you’ve held your story or if your siblings who want to know, get the book and take Elizabeth’s example of do it because it’s really a wonderful thing. You’re a real voice of hope for all of those bereaved siblings who seek information and understanding. I really appreciate your being on the show today.
E: It was a pleasure to be here. Thanks for having me.
G: So my guest today has been Elizabeth Devita-Raeburn and my guest next week is going to be Dr. Richard Dew. Our topic is going to be surviving the death of a child by homicide. In July of 1992, Dr. Dew’s son, Brad, was murdered. Dr. Dew will share his experience with the criminal justice system and give messages of hope, healing and forgiveness. If you want to hear our show today with Elizabeth, it’s archived on www.Health.VoiceAmerica.com as well as on www.thecompassionatefriends.org website. This is Dr. Gloria. Please stay tune again next week Thursday at 9:00 a.m. Pacific Time, 12:00 Eastern, for more of Healing the Grieving Heart, a show of hope and renewal and support. Remember, others have been there before you and made it. You can, too, and you need not walk alone. Thanks for listening. I’m Dr. Gloria.

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Elizabeth DeVita-Raeburn

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Elizabeth DeVita-Raeburn is the author of The Empty Room: Surviving Sibling Loss, a memoir and journalistic exploration of sibling loss. Her brother, Ted, suffered from a rare immune deficiency disorder and spent 8 years in an isolation room behind a plastic curtain before he died. He was one of two boys upon whom the movie “The Boy in the Plastic Bubble” was based. She is a contributing writer for More magazine, and has also written for Self, Discover, Psychology Today and Harper’s Bazaar, among other publications. Elizabeth is currently working on a new book, The Death of Cancer, with her father, Dr. Vincent T. DeVita. She lives in New York City with her husband, writer Paul Raeburn, and her son, Henry. To learn more about Elizabeth and her work go to: www.devitaraeburn.com or visit her blog: www.tedishere.blogspot.com Elizabeth appeared on the radio show “Healing the Grieving Heart” discussing the Death of a Sibling. To hear her interviewed by Dr. Gloria & Dr. Heidi Horsley, click on the following link: www.voiceamericapd.com/health/010157/horsley070705.mp3

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  • Good advice. We often advise our students to take a step back and understand what they are getting into. This article reinforces that concept with some practical advice.

  • Desiree Addison says:

    I lost my big brother/bestfriend on 1-1-12, I am ashamed to admit it but I coped for the first 6 months by drinking every chance that I could so i could be numb to the realization that he was no longer here with me. Losing him has turned my world upside down in so many ways and I don’t know how to move forward without feeling guilty for living and being happy because he is no longer here. For the longest I wasn’t able to grieve because I had to be strong for my mother and my brother’s small children but here I am 6 months out from his passing I have stopped drinking in the attempt to face my hurt and loss and it is very hard emotionally, I close my eyes and the last image I have of my brother is at the hospital on the bed laying there cold and stiff, I begged him to wake up and come back. My heart is broken into a million tiny pieces because when I lost him I lost the one person who supported me in everything I did and always believed in me, protected me, and helped me become the woman I am, part of me is so angry with God for taking him home when he was needed here more the other part of me is mad at him for leaving me, the part that hurts the most is that our last words to one another were mean, I never got to tell him sorry or that I loved him and appreciated him and I will never get that chance now. I know that I need help but I don’t know how to ask for it.

  • jill alexander says:

    My name is Jill Alexander, i lost my brother 5/27/12.. he was 55yrs old. My brother was a strong man, even through his many illnesses. I made a promise to him that i would stand by his side no matter what, and i did through the grace of God. That day he died he was in the hospital, and as i walked through the door i all ways yellled out HEY!! He always replied back HEY GIRL,,,that day i brought him a snack of 6 donut holes…we laughed/talked, and watched the car races, his favorite. As the day pass i told him i would see him the next day, and he remind e to bring his favorite chocolate, i smiled and said okay. We would always told each other I LOVE YOU, and that day was no different. When i got that call later that evening to come back to the hospital, i knew that was the end.. He died @ 7:48pm on 5/27/12,,, I’m sooo glad we formed a special relationship, and he knew i loved him to the end.