Always a Sibling: Navigating Sibling Loss | Annie Sklaver Orenstein

In this deeply resonant episode, Annie Sklaver Orenstein, the insightful author of 'Always a Sibling: The Forgotten Mourners Guide to Grief,' dives into the often-overlooked experience of sibling grief—a complex journey that’s rarely given the attention it deserves. Annie bravely shares her personal story of losing her brother Ben, a heart-wrenching loss that ignited her passion to create a much-needed resource for bereaved siblings.

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Nina and Annie explore the profound impact of sibling relationships on identity and how it shapes the grieving process. They discuss the powerful role of memory-keeping, the struggle to honor one’s own grief while meeting the expectations of others, and the desperate attempts to keep the memory of a lost sibling alive.

The episode also delves into the importance of language in the grieving process, the often unspoken fears around experiencing joy after loss, and the yearning for a physical connection with a sibling who is no longer there.

Takeaways:

• Sibling grief is a unique experience that is often overshadowed by other types of grief.
• There is a lack of resources available specifically for grieving siblings.
• Sibling dynamics play a significant role in shaping identity and can be disrupted by the loss of a sibling.
• Sibling grief is valid regardless of the closeness or quality of the relationship.
• Siblings may feel desperate to keep the memory of their lost sibling alive, leading them to take on roles or responsibilities that may not align with their true selves.
• The relationship between parents and siblings after loss can be complicated, with some siblings feeling unsupported or burdened by their parents' expectations.
• Siblings experience various forms of grief, including anticipatory grief, traumatic grief, and complicated grief, which can overlap and coexist.
• Experiencing joy can be terrifying for siblings, as it highlights the absence of their lost sibling and the vulnerability of opening themselves up to love and potential loss again.
• Having language and an audience to share their grief journey can be empowering and validating for siblings, helping them navigate their grief and find meaning in their loss.
• The longing for physical connection with the lost sibling, such as hugs, can persist even years after the loss, and it's okay to acknowledge and sit with that sadness.

Related Episode: What the heck is grief anyway?!

Contact Annie Sklaver Orenstein:

• @anniesklaverorenstein
• Website & Book

Contact with Nina Rodriguez:

• @griefandlight
• griefandlight.com
• Subscribe to my newsletter

Disclaimer: griefandlight.com/safetyanddisclaimer

Chapters

• 0:00 Preview & Intro song
• 0:40 Introduction, Meet Annie Sklaver Orenstein and big brother Ben
• 9:09 Understading the vastness of the sibling loss experience
• 15:48 Siblinghood, Birth Order, and Identity Dynamics
• 24:00 Estrangement and Sibling Grief
• 28:49 The Memory Keepers
• 34:46 Establishing New Boundaries: Parents and Sibling Grief
• 38:12 A Dual Loss: Losing the Parents you Knew
• 42:04 Sibling Loss and the Many Types of Grief
• 45:43 Anticipatory Grief, Addiction, Illness, Mental Health and Sibling Loss
• 51:10 The Terror of Joy
• 59:41 How to Reach Annie
• 1:00:17 It's OK if it Never Feels OK

Transcript

griefandlight (00:00.098)
How could I be happy at a time like this? And it took me a long time until that little voice inside my head started responding. A time like what? This is it, this is the time, this is, it's all you got. But it is really scary to feel that and it's scary to feel joy when you have also experienced that joy being torn away from you. You just lost your loved one, now what?

Welcome to the Grief in Life podcast where we explore this new reality through grief -colored lenses. Openly, authentically, I'm your host, Nina Rodriguez. Let's get started. More than 4 million American adults each year will lose a sibling. Yet there isn't a modern resource guide available that speaks directly to this type of grief that can be overshadowed by grieving parents and spouses and made even more difficult by the complexities of sibling dynamics.

That's a quote from the book, Always a Sibling, The Forgotten Mourners Guide to Grief by today's guest, Annie Sklaver Ornstein. After her brother Ben was killed by a suicide bomber in Afghanistan, Annie was heartbroken and unmoored. Standing in the grief section of her local bookstore, she searched for guides on how to work through her grief as a mourning sibling and found nothing. So she created it. Annie is a qualitative researcher

and storyteller who has spent over a decade collecting stories from people all around the world. And today we get to deep dive into all things sibling grief. With that, I'd like to give a warm welcome to Annie. Annie, welcome to the Grief and Light podcast. Thank you so much. Thank you for having me. It's an honor to have you. Truly, I was commenting before we recorded. If you're watching on YouTube, here's this beautiful book that she wrote. I want to start off with a personal thank you.

for all the work that you put in. It touches my story so deeply. I have never felt so seen in my grief as I have with your book. It healed the parts of me I didn't know needed healing. It felt like a big sisterly hug and I really, really needed that. I didn't even know I needed that. So thank you for all you've done.

griefandlight (02:19.118)
We're going to deep dive into so many aspects, but if this is a first time watching or listening, I also am a bereaved sibling. I lost my only sibling in 2019. My brother Joseph at the age of 32, I noticed Ben was also 32. I noticed that point of commonality. And so much of the sibling experience goes unnoticed. It goes unspoken of, unheard, unwitnessed. It's just kind of a shadow following this.

thing we called grief and it needs a voice. So many of us are finding ourselves as bereaved siblings in the space with nothing to say, nothing to do. I'll stop talking here. want to give the floor to Annie and, and tell us a little bit about Ben, who he was in your life and what life was like before everything was turned upside down. Yeah. So Ben is my oldest brother. I have two older brothers, Ben and Sam.

I talked about Sam as well in the book and he very kindly allowed me to continuously trigger and re -trigger him by asking him all sorts of questions. So thank you Sam. But Ben was the oldest. We're all four years apart and I'm the youngest. So Ben was eight years older than me and Sam four years. And Ben was always larger than life.

You know, according to my parents, my first steps were to Ben because he said, Annie, come here. And, you know, I think that is very emblematic of our relationship. There was always place for me. You know, he was always kind and welcoming and inclusive, which can be hard to do when you're eight years apart. And I always jumped.

at any opportunity to spend time with him. He took his role as a big brother very seriously, you know, and his role as a protector and as kind of the guide. He took that all very seriously and he was very open about his experiences and he really wanted to share those things with me. I think in a lot of ways,

griefandlight (04:40.212)
He taught me power of vulnerability and the power of sharing your own stories and experiences as a way to encourage others to do the same, you know, that also leading through vulnerability. And it made sense that in a lot of ways that this is what kind of came out of it. He loved to write. He was a very avid journaler.

kept journals and broke down everything and shared. It was very vulnerable. And when he was gone, I didn't have that guidepost anymore. I didn't know what was supposed to happen. hadn't prepared me. He hadn't told me about that. This wasn't one of the life experiences that he had.

warned me about or shared with me. And I didn't know how to operate in a world without him, without his presence and without his guidance. I had never lived in a world without him. And so everything was very scary and very unknown. And it felt like not a world that I wanted to have to live in for the rest of my life.

I, I was 25 when he died and, you know, it's a tough age, you know, no one really could relate to what I was going through. Thankfully, I didn't have friends at that time who knew, you know, who had had this experience and it certainly added to the isolation of all of it. And then on top of that, and I would imagine, I mean, I'm curious to hear if you felt this as well, but then on top of that,

the person who I always called for advice and to talk about these things was the one person I couldn't call. so that was also just very, I didn't know how to compute that. I didn't know who else to talk to or where else to go. I hear you, I see you and I'm sorry for the loss of Ben. I also honor how beautifully you showcased who he was, who he is.

griefandlight (07:00.34)
who he continues to be. And he seemed like an old soul. Like he may have died young, there was an old soul aspect to him in terms of his writing. You include a lot of his journal entries and what a blessing to have that. Wow. What a beautiful gift. And to be able to read and then incorporate that. And he was a profound thinker. mean, I was trying to think what was I doing at his age? my God. what I was.

It was like his journals from college were him like debating like the ethics of war and you know, why people crave power and like all of these big existential questions where like I didn't keep a diary in college, but I can assure you that if I had, it would not have read anything like it. My mom tells the story that when we were younger,

If we were running late for school, was because Ben would insist on reading the New York Times in the morning before school when he was like in middle school. Wow. And so he wasn't ready to go because he still had a few more articles he had to read and everyone would be late because the eighth grader had to read the New York Times. The news. The much who he was.

interesting. He was very preoccupied, it seemed, or curious about his legacy. And I'm not going to give too many details because it's something you added to the book. But the questions that he was asking about what you leave behind were so profound for somebody that at that age, and I guess we shouldn't judge because, you know, these thoughts belong to anybody at any time, but it was beautiful to see. And there's a bitter sweetness reading it knowing that he passed so young and yet

Here we are years later, over a decade later, talking about this, talking about Ben and his dreams and his questions. So I love this bittersweet aspect of what we get to do with our grief and how we give it meaning, which we'll get to later. But I want to go back. You did such a beautiful, beautiful job giving words to the sibling lost experience, why this is the way it is or isn't the way it is. And so you spoke about how

griefandlight (09:20.064)
It was difficult for you to see how to show up in the world. Grief and loss rearrange how we show up in the world. This is particularly highlighted for siblings. And there's so much nuance. I love that you kept repeating the word nuance. I'm a nuanced girl. I also love that you said fine is the worst word in English vocabulary. Same, I've always said fine is a four letter F word. And I just love, love, love the way you systematically explained from both a science, personal,

and from the stories that you gathered. So talk to us a little bit about that process and what is the importance of identity as it relates to siblinghood? Yeah. So, you mean in the process of kind of how I put it all together or what it looks like in? Yeah. So I'm a researcher by training by trade. You know, I do work a full -time job and in research and I knew that I was writing this book when I was, you know, even just

planning this book and the proposal for this book, I knew that it was, I was going to need to do a lot of interviews that I was going to need to talk to people who had lost siblings because there are so many factors that impact this loss and the grief, right? The cause of death, what your relationship was like, you know, the, the family around you, all of these things.

For me, this story of an older brother who I had a great relationship with, who was killed in Afghanistan, is one possible combination, right? But I couldn't talk to people who had lost siblings from addiction or mental illness or prolonged physical illness or experienced a sudden traumatic death, but there was also military involvement, which is different than other types of...

of sudden traumatic death. And so I really, really, really wanted to capture all of those different stories. So I did a survey and I started conducting interviews. And one thing that I realized very quickly was that people were trying to qualify their grief or almost explain why they were, you know, they felt like they had to give me a reason why it was okay that they were grieving, you know.

griefandlight (11:41.992)
Exactly. They were trying to validate their own grief because it had been invalidated for so long and it had been ignored for so long. so something I realized very early on was that in this book, needed to first and foremost convince siblings that they were allowed to grieve. I don't need to convince anyone else. If your family or your friends, like

If they don't believe you should grieve, then that's a separate problem. But you need to know that you are allowed to grieve and that your grief is expected, that it is normal, that you need to respect it and appreciate it and not deny its existence. That ended up really framing a lot of it. And that's why it includes so much science around how our brains work. And the...

processes that are triggered when we are grieving. And, you I talk a lot about neurological pieces of grief and somatic symptoms of grief and all of these things from a scientific perspective, because for me, that helped me understand my own grief. And so it was one of those things where I felt like, if it helps me, maybe it will help other people. And maybe I can validate this grief in others and make people feel like

whatever type of grief they are experiencing is normal. It is expected. They don't need to justify it to anyone, especially not to themselves. And so that became kind of my number one goal was just how can I make siblings understand and accept that their grief is real and that they are allowed to grieve in whatever way.

they need to grieve. You did a beautiful job of that. And thank you to the point that I work with grievers. actively work with grievers. I got certified in grief care. I've done my own search. have the podcast, all these things. And as I read your book, I recognized within that there were so many parts I still feel I still didn't acknowledge as valid within my own grief.

griefandlight (14:00.736)
And so that was very eye opening. was like a mirror was held and I said, my gosh, I've been downplaying this and this and this and this. And I went down this whole list for chapters on end. It was interesting because, you know, here we are like, I know grief, I work in it, I get it. And then somebody pulls this mirror to you and it says, but do you really, to the extent of this experience is the magnitude of this experience.

partly because it's been understudied. We don't really fully understand how our identity is shaped by siblinghood. And you touched a lot on that. For example, the most hurtful thing anybody said to me, I'm not sure if it was intentional or not, well, it was a coworker about year one two, year one, after my brother's passing. And she said, well, now that you're an only child, blah, blah, blah, blah. And her words just faded into the background. I don't even know what she said after that.

I had never, not once, not ever thought of myself as an only child. That felt like a punch to the gut. My body went cold, literally, like in the movies, like the sound kind of faded. Everything felt so emotional. I said, what did she just say? Never, not once, not ever had I thought of myself as a only child. And yet she brought this to my existence because there are elements of the loss. He was my only sibling. I will have to navigate life sort of as an only child.

my biggest honor was being his sister. this reframing of our identity and how we show up, you did a beautiful job of explaining that from a science perspective and also how it evolves with time and how we get to, know, which is, sorry, side note here, which is why your book is called Always a Sibling. I appreciate the always, not still a sibling, always a sibling. And that's part of what was so eye -opening. Talk to us about how our identity is so shaped.

by siblinghood and by where we fall in this scale and how loss shifts that sometimes momentarily. Like I heard you say that Sam wasn't sure where he fell in the scale here. So talk to us a little bit about that. Yeah. The birth order is a good example of why it was important for me to do these interviews because I was the youngest and I'm still the youngest. Right? So my, my place didn't change. have

griefandlight (16:21.73)
Fewer living older siblings, but I am still the youngest. When I talked to Sam about it, he said, getting, he felt like he tried to step up and be the older brother and do the things that he thought Ben would have done. But that now he feels like he's solidly back as a middle child. And I think, it is interesting because he was used to being an older brother, but also having an older brother and not being the oldest.

you know, wasn't the one in charge of all of that. When you're growing up, there is a very ingrained dynamic between older or younger or whatever order you fall in. And when that, it impacts the whole way that your family structure is and in a way, kind of the way that you process life.

and the way that you interact with others can be really impacted. When that shifts, it can be very hard to find your place in your nuclear family, right? If the oldest was the one who often took on a lot of the responsibilities and the oldest is gone, then, you know, are your parents suddenly relying on you for something new or expecting you to be someone different, right? They still need that.

that oldest and so now are you in a position where you suddenly have to have a completely different relationship with your parents, know, do things they didn't ask you to do before or are expected to do things that you weren't expected to do before. And you don't have that person anymore who could take care of you. You know, from the youngest, that was very much the experience. People I spoke to who had lost their only sibling.

It was very much going to be experience you talked about where from the outside, I look like I'm an only child, but I'm not an only child. And my most formative years were spent as not an only child. And even people who lost siblings in early childhood, their siblings still had a presence in their life, whether spoken or unspoken. know, that sibling was there and impacted the way that their parents parented them. Right? If you lose

griefandlight (18:45.246)
If you lost a sibling in early childhood, that means your parents had lost a child before, when they were raising you. And how could that not impact how they raise you? Right? Even if that sibling isn't physically present, their presence and existence was a huge part of how you were raised and why you were raised the way that you were raised. And so to treat someone or, you know, like your coworker did to say someone's an only child, erased is all of that.

It erases all of the years, not just the years that you spent with the sibling, but the years since then where their loss has impacted your entire family. You know, it doesn't just disappear. And so I think the other big part of the identity piece is that as we are growing up, there's something called sibling de -identification, which is where siblings try to find their place in the world.

kind of relative to each other. And often it's by doing the opposite thing, right? So let's say my brother did basketball, which is not true. We're not really an athletic bunch, but like my brother did basketball and was the star of the basketball team. So I'm not doing that. My thing is art, right? And it's, it's a way in childhood and adolescence to try to find yourself as an individual rather than as part of the sibling unit. When that person is

gone when they're not there anymore, then who are you and why are you doing the things that you're doing? how your place in the world has always been relative to this other person's place in the world. But if they're not here, then where are you and what are you doing? And how do you even know how to live in that?

completely new framing of the world, right? And so they could go from being the person who was one of the most influential in the development of your identity throughout adolescence to suddenly you don't have that thing anymore. And so it's hard to know where you stand or what you do. then, so now do you start doing basketball also because

griefandlight (21:06.648)
they're not there to do basketball and you want to help your parents and make things better. So do you start doing basketball because that gives them a basketball kid again, right? And well, but what about the art thing that I did before? And it can be very easy to lose your own identity, especially if you try to embrace theirs. And sometimes parents put kids in that position, right? Where parents,

especially if the loss was at a younger age where parents almost put pressure on the surviving child to live for both kids, right? Or to replace the one who had died. And that muddies it even more. Finding your identity in all of this is a really difficult thing. And I think we don't talk about it. It's not certainly not something that I ever expected to be a part of grief, but it's very, very real.

thing that requires a lot of attention and my conscious effort to unpack and to decide, you know, what you're going to do and who you're going to be moving forward. Beautifully said. And I love that this book for context is for all siblings. So it talks about the sibling loss experience as a whole. And you did such a great job of making sure that everybody felt seen.

as a sibling, even siblings who never met their siblings. So I've spoken with mothers who have experienced stillbirth and they still talk about that child because that child is very much alive to them in their life and their present lives on. If they happen to have siblings, I have a dear friend, she has five kids, one like she says, heaven side, four earth side is how she frames it. The older child still talks about her baby brother.

in the context of he's still with us, know, not that she's not aware of what happened. She very much understands what happened, but his presence has been included in their birthdays and their life. And she knows she has a brother and he's very much alive. And though, even though she never technically met him, neither did the younger siblings. So that's one aspect of it. Then there's the birth order aspect of it. Then there's the, you know, you even talk about twins, like when twins lose a sibling, that's a whole other experience. That's very specific to them.

griefandlight (23:29.422)
In my case losing my only sibling. So you can already see that with siblings there's so much nuance and there's so many ways it affects people differently and then your relationship with your parents, your relationships with each other. I find that a lot of siblings start off with saying we were very close. That's the first thing they'll say, you know, like my brother or sister died and we were very close. And it's like a qualifier. Like you have to understand that they were very close.

same, right? Like I've expressed myself in the same way. One interesting point that jumped out at me from your book was that it doesn't matter. Even if your relationship was strained, even if you had a tough relationship with them, there is still immense grief with the loss. And I'd never thought about that because I loved mine so much that I guess it makes sense that somebody would suffer less if they weren't close. So you found

Otherwise it's a different kind of suffering, but there's a lot of pain and grief involved in that loss as well. So could you touch a little bit up on that point? Yeah, I think, you know, to your, to your, one of your first observations I talk in the book is all about like the questions people ask you when they find out you've lost a sibling. And sometimes the first question they'll ask is were you close? And it's almost like people are trying to understand how much like

sympathy they should have or like how upset you should be based on whether or not you were close. Right. seeing, I got, so in the survey responses, the first place that I, cause I thought the same thing as you. I thought if you weren't close, you probably aren't as upset. One of the first moments where I thought, I'm, I'm wrong about this was in the survey responses. There was someone who in the question of kind of can you,

your relationship with your sibling, said, we weren't particularly close. If we weren't sisters, we wouldn't be friends. And then in the question of kind of talk about their death and the aftermath, it was like, it's the worst thing that's ever happened to me. Nothing has ever been the same. You know, it was an agonizing account of how terrible it was. A breath after, we weren't particularly close. She wasn't my sister. She wouldn't be my friend.

griefandlight (25:51.04)
And so I really, and I heard that time and time again, and I really wanted to unpack it. And I think there are a lot of things. mean, number one, even if you don't like them again, they still were that presence in your childhood, right? Good or bad. Sometimes the sibling made your childhood living hell. And for those folks, the level of grief they felt was very confusing, you know?

They were confused. Why am I grieving this person so much who has only ever made my life more difficult? In a lot of ways, it's because you lose all hope of that relationship ever getting any better, right? If you've ever held on to that, the faintest inkling of hope that one day we'll get along. Maybe when we're adults and we're out of the house, we'll get along. Maybe one day when this happens or that happens.

I can have a sibling I'm close with, you know? And a lot of people want that. A lot of people who have strange relationships, you know, they witness positive sibling relationships with their friends, maybe watching their children, and they want that. And as long as your sibling is alive, even if you are estranged, there can still be that little bit of hope and you lose that hope. And so sometimes what you're grieving isn't

so much the person or the relationship you had, but maybe what you're grieving is any hope or chance of a future relationship that is any better. Or you are grieving because after everything you've been through, they're just gone and there's nothing else there. There can be a lot of anger in that as well. But I think it's, it's almost like you're grieving a different kind of thing.

but you're still grieving and it's still, in those cases, sometimes the extent of the grief or the extent of the anger or just the strength of those emotions can really catch people off guard because even they don't think they're going to grieve as much as they actually do. Yeah. And you have multiple sections dedicated to the anger aspect and how valid it is and how it manifests.

griefandlight (28:12.728)
Sometimes when we least expect it, I'm definitely one that experienced some of that. And it was the moment I realized, wait, this grief thing needs attention. Whatever this thing is that I'm dealing with needs attention because it is popping up in the most unexpected ways. And I'm not me right now. The whole identity thing, grief rearranges their sense of identity. has the secondary losses. It feels a lot more pronounced as a sibling because like you said, you will always be that sibling.

this experience makes you question that and how you show up and how much of that responsibility you take on, how much of their identity you take on. One aspect that hit me at my core was the memory keeping aspect. said that siblings tend to be the memory keepers of their siblings life. And we try to figure out how to make them live on. In my case, it was for my parents. Like, how can I be both people

at once so that my parents can feel like they didn't lose a child or that he's still alive or that his memory lives on. And I bent over backwards to the point that I started to think I had to live his life. That's something you touch on and you say, to what degree do we take this on? How can we ensure that they live on shore and we continue our bonds, which we'll touch on in a little bit.

at the same time, how do we live our own life? And these are big, big questions that we define as we go along. Maybe speak to that experience a little bit. Yeah, I think, and I think that's also one where your age at the time of death plays a really significant factor. If the death happens in childhood or adolescence, your parents have a lot more control over what you're doing or not doing, right? So there are some instances of parents just saying,

now you're going to do the things that your brother did, right? Like you almost don't have a choice in it or, you know, they put that pressure on. I don't know how old you were when your brother died. For me, I was 25 and I was very much figuring out what I wanted to do. And he had started a nonprofit. And so my first thought was, I guess I'm going to run his nonprofit now. And that's going to be what I do now. I was in school for toy design and his nonprofit,

griefandlight (30:32.322)
built wells in Africa and Northern Uganda. mean, there are no transferable skills there, right? I, nothing that I was learning would have helped me run a nonprofit. My parents did not ask me to step up and run the nonprofit, but I would be awake at night. Like this, I guess this is, this is the only way, right? Because I didn't want that to die too. And I wanted to keep it alive for him. And so I felt like, I guess I'm.

I have to be the one to do it, right? And I'm glad I didn't, but I came very close. And I think there are a lot of folks, especially if they were younger, who did fall into that pattern and wake up 10 or 20 years later and think, did I actually want to do any of this? Is this me or is this them? I think it's a little bit less when you're older because your life is more established.

And so, you know, especially if you have children or if you're deep into a career, but you might still take on their identity in other ways, maybe in family gatherings, right? Maybe you play the role that they played, or maybe you have to play a new role for your parents. There are a lot of ways that it manifests, but it is similar to kind of diminishing your own grief. It is something that I saw.

and I experienced you simply kind of do for themselves. It's not, sometimes there's external pressure and sometimes there's not. Sometimes you are just so desperate for that person to live on, for some piece of them to live on that you were like, I will give up everything and dedicate myself to that piece of their life living on. And sometimes it works out, sometimes it doesn't. You know, I think in my case, this book was how I ended up doing that.

And I think I would, I am a much better writer than I would have been a nonprofit executive. You know, like this was a better use of my skills, but there is some, you're so desperate. It's kind of the only word I can think of. You're so desperate to keep some part of them alive and some piece of them alive and some memory of them alive. And so if it's, you know, taking their dog or

griefandlight (32:59.266)
their job or run, you know, whatever it is, you're just like, great, I'll do it. I'll be that thing because maybe I'll feel them again. Maybe I'll feel closer to them. Maybe I'll feel their presence more strongly. I'll know what it would like to be them or whatever it is. And then it can, it can really be years later when you're like, wait, where am I? Where am I? You know, it's, easy to lose yourself in it. Right.

I was 35 when he passed away. was three years younger, he was 32. And so yes, in that context, my life was already a little bit more on its own path. However, the first Christmas I bought gifts on my behalf and on his behalf. And all the birthdays and all the mother's days and father's day, I gave my parents gift on my behalf and his behalf. And I said, this is what he would have said. then one day I caught myself saying, I don't know that he would have said that.

I don't, where, where is this coming from? I don't even, I don't know if this is true. I just feel obligated to speak on both of our behalf. And that was a very interesting dynamic. And even, you know, I thought, I need to start a foundation. And this is what my life is going to look like. And now I have to do this and I have to become an advocate for this and then I said, but I don't want to do any of that. Why am I even thinking this is an option for me? But it's very real because you feel almost a, obligation to do it. to live out the rest of that.

You feel so powerless in the face of what has happened. And so I think part of that desperation is a drive to have control over something and to like try to make sense of it, but to also like just have a sense of ownership over something, you know, because everything else feels like it spiraled out. Right. You touched a lot also on the relationship to parents.

And that is so, complicated. got very lucky that my parents have mostly respected my boundaries and I've felt empowered to speak up and say, you know, no more of this, less of that, more of that. But there's a lot of siblings who do not get that or are even chastised or reprimanded for not being more supportive, for not showing up more, for fill in the blank. You did a beautiful job of systematically releasing that burden, releasing the siblings from that.

griefandlight (35:18.988)
responsibility to the degree that they choose to, right? Because sometimes we do feel that there are moments when we need to step in for our parents, but it is very important to understand. And so much of grief is returning a sense of agency to ourselves and to learning to trust ourselves in this new paradigm and to setting up the right boundaries. And sometimes we forget that those boundaries do include our parents. And that's a harsh, know, thorny topic sometimes because of

whatever relationship you may or may not have with your parents or if they're even alive, that's another layer of nuance. But you did a beautiful job on that. Maybe touch a little bit on the parent sibling relationship after loss. Yeah, that one was really hard and it was a really hard chapter to write. You know, I think like you, I think I left out. I think that my parents have handled it in as good a way as I could have hoped. You know, I don't have

personal experience with some of these things, but I will say that some of what I heard was kind of the nightmare. You know, parents really depending on their surviving children for emotional support in a way that is not appropriate, know, oftentimes not developmentally appropriate. I mean, that very literally like teens or people in their twenties being the

soul emotional support of their grieving parents and getting calls while they're at work and getting calls in the middle of the night, troubleshooting, you know, their parents grief without their parents reciprocating, without the parents acknowledging that the child was grieving. I heard from multiple different people that it was months after their sibling's death before they would get a call from their parents saying,

I just realized that you're grieving too. How are you doing? You know, and that call might come six months, 12 months after the death. And I think that is very real. There were a lot of stories, especially again, in adolescence where parents have a lot more control where, you know, there was one woman who was telling me her brother had taken his own life in their apartment.

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And after the hospital, her mom didn't want to go back there. So she had someone pack up all their stuff and they moved in with the mom's boyfriend. And so she was breaking one day, I lost my brother and my home and I had to start at a new school and all of these things. And I heard similar stories or parents having full ownership over all of their belongings and sibling just wanting like that one thing.

They're not allowed to touch the siblings' things or whatever it is. I think the hardest part about the parent dynamic is that your parents cannot support you in the way that you want to be supported after such a significant loss. It's just impossible. Your parents are also grieving and they are grieving entirely different kind of loss, but a

extremely significant one and they will not have the emotional bandwidth or wherewithal to give you the support that you need. And that is a painful reality. Sibling loss is sometimes known as a dual loss because while you've lost your sibling, you've also lost your parents in some way, whether it be temporarily or not, you have lost that, that

support that you need because they are grieving so deeply. And I think that the best thing we can do is kind of all acknowledge that, right? We can be together and cry together and do all of these things together, but also know that we all need to find our own outlet and our own support systems because we're all grieving so deeply that none of us have the extra emotional bandwidth.

to really help each other in the ways that we need it. And that's sad. It's sad because like you want your parents to be able to help you. You want that hug, you want that support, but also you don't want to trigger them and you don't want to make it worse. And you don't want them to worry about you because they're already going through so much. And it's an impossible situation. think sometimes people try to like find a solution or find...

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you know, they'll blame someone or they try to find an answer to it. And it's just one of those really crappy situations where there's no solution and all you can do is just get through it and help everyone to try to find the support they need and be realistic about everyone's limitation. You mentioned the boundaries and I think that's a really essential piece of all of this is like, how do we have our boundaries so that we can be together?

without draining each other, without putting too much on each other. And how do we be together and heal together without breaking each other down on our bad days and in those angry moments? Yes. That dual loss aspect of it. we definitely, that's another thing that came up as I was reading the book is grieving the family dynamic, the family unit as it was and will never be.

these new parents who as happy as they may be at times, there's always that undercurrent of sadness and same with us, know, there's just always that undercurrent of sadness and loss and that elephant in the room that when we get together, there's an empty chair. And when we make dinner or buy gifts, there's just always that one person that's not going to receive them, not going to be there. So there's inherent grief in grieving the family unit and dynamics as they were and as they are now.

and so much grace to parents because like you said in the book, they're damned if they do, damned if they don't. It's also very difficult for them. So it's a difficult experience to navigate as a whole and from whatever perspective because one sibling has a different relationship with their parents and another sibling. And we just have to be gentle and show grace. It's so overused, but it's so true. We just have to show each other grace along the way.

I want to touch on a few things. Thank you for touching on this because it is something that goes so unnoticed. My brother suffered from addiction and the grief of addiction starts way before the person passes. There are so many aspects that are traumatic. You touched on so many of those and I thank you for doing it so beautifully, respectfully and honestly. Also with the topic of mental illness, also with the topic of suicide, also with terminal illness and

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complicated dynamics that start way before the passing. My brother's passing was sudden and I used to wonder, would that be better or worse than a long passing? I no longer ask that question. That question is so irrelevant now. At the end of the day, there's so much pain in both of them. Terminal illness is no better. Long goodbyes are no better. There are so many different types of grief. I don't know that we have time to go through all of them. And I did an episode on this. I'll link it in the show notes. But with all of those griefs, which you outlined in the book,

What I realized is sibling loss, no matter how you cut it, tends to touch on so many of those, including complex grief, which caveat, if you've heard my episode before, you know I'm not a fan of. However, for the first time, you open it up in a perspective that I said, I could actually relate to that. I could totally see that being valid. The reason I have an issue with it is because to me, all grief is complicated. It's like, it's just a complicated topic.

But I know what you mean when there's an element of stuckness to it. Speak openly on that, on how siblings tend to experience multiple types of grief all at once. Yeah. in the book I outline 15 commonly recognized forms of grief and they are not exclusive of each other. So you can experience multiple of them at the same time or

you know, over time, sequentially, it's the plethora of options. And with complicated grief and now they're calling it prolonged grief disorder. It is this real kind of preoccupation fixation on the loss. And it is a feeling of stuckness. Like it is constantly a fresh wound. I experienced it for many years and I clung to it.

because it felt like the grief was all I had left of him. I wasn't open to signs or continued bonds or feeling his presence. I felt like, well, this grief is what I have left of him. I am not going to move forward. Thank you very much. I'm going to hold onto this very tightly and I will live here in this terrible place forever. And it makes it obviously extremely difficult to

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start to move forward and to feel those continued bounds or develop them. And then there are other forms of grief, like traumatic grief, which, if you experience a sudden loss or a violent loss, it's very common where there is a kind of combination of PTSD and grief, which I experienced as well, you know, leads to nightmares and panic attacks and all of these things that are symptoms of PTSD, but are

really in relation to the loss and the grief. And there's also something, and you brought up addiction and mental illness and extended illness. And there is a form of grief that's really interesting called anticipatory grief. And that is that grief of when you are grieving before the person has died. There's also anticipatory grief that a lot of folks experience in the lead up to big events, which is also very real and real for me, but

That anticipatory grief of grieving a sibling before they have died is really common when there is a struggle, whether it's a struggle with addiction or mental health or an illness where you are so afraid of losing them and you know that it is a possibility. And sometimes you know that it is just a matter of time towards the end. And so the grief starts early.

And for some folks that meant that they actually were surprised that they didn't grieve as much after. And they questioned that in themselves. Why didn't I grieve more? And many times it's because you were grieving for a long time already. know, people who were afraid that every phone call, every phone call they got, they were afraid this is the phone call. This is the one, right? That every time they saw their sibling was going to be the last time. And so that grief,

can start early and it often does start early. And even though you want to believe that they will be okay and that they will be healed, there's also a part of you that has already grieved some piece of them. know, lot of the folks who did experience that, it was because they had to watch their sibling suffer in one way or another through any of these things, addiction or any kind of illness.

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they watched their sibling in pain and they watched their sibling suffer. When you say which one is easier, right? I don't think there isn't easier because I was on the other side where it was very sudden, traumatic death. And yes, that's terrible and traumatic. Would I have rather watched

him suffer and have him be ill for years or struggle with addiction for years. No, think they're both, they're all terrible. They're all terrible option. What I want is for him to just be here. But I would find that people, I remember having a conversation with my hairdresser who had lost a sibling and

she had struggled with addiction and ultimately passed from an overdose. And she said to me, but you know, she struggled with addiction. We always knew that this was going to happen. And she spelled it again, like a justification, but she said it like, it wasn't as hard. know, we always knew it was going to happen. It wasn't sudden like that. And my response was, well, but she's gone, right? Like,

Ultimately, it's the same thing. doesn't matter because, and she had to watch her sister struggle in a way that I didn't have to watch my brother struggle. know, and there is no good option, I think, because when it comes to sit -worn loss, if we're talking, we're talking about this because it's, it's an early loss, right? It, they've died before us. It's premature. It's out of the natural order of things.

The way I want to go, I want to just not wake up one morning. I want to go in my sleep when I'm like 105, you know? And that's not what happened in any of these cases. And I don't think there's a better option or a worse option necessarily. None of it should happen. And it does. And so then there are just these different forms of grief that you are then.

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left with as a result of the circumstances surrounding the death often or what led up to it. Yeah. And that's why it's so important to bring up these nuances of the very real lived experience in each of these circumstances. In my case, I didn't expect him to die ever along the process. thought he would be

somebody that would make it. knew if anything, the conversations I had with my brother is like, when we get older, I may or may not have to deal with this issue with him as an adult. And I just have to make room for him in our lives. And you need to understand that my brother is going to be in our lives no matter what, because of this issue, it's not going to go away. But not once, not ever did I think he's not going to be here. And you could call it denial. could call it, you know, there may be other things operating there, but when he died, now looking back on it can see the anticipatory grief.

But in the moment, what I was grieving was I realized we're never going to have a traditional brother sister relationship because there's a mommy element to it. There's a mothering, he's my baby. I got to take care of him. There's a caretaker element. And because of that, there's grief in that relationship. But if I had to label this type of loss, would be that sudden loss. However, we're looking at it retroactively, I could see the anticipatory grief. I could see how all these things were very prolonged and

And I wanted to touch on two things very lightly just for the sake of time. Surviving siblings have a fixation on early death. Sometimes they develop a fixation of early death, especially related to the cost of death. They feel like losing a sibling is like losing a limb versus losing someone you love. So it's almost like losing a part of you. And this is particularly highlighted with twins or close siblings. The last part I want to talk about here is

Joy and grief, the terror of joy. That was very interesting to me. A lot of people say, you heal to expand your capacity for joy, not necessarily to get rid of the pain. And it's interesting how joy can be such a terrifying thing in the context of loss. Talk about joy and grief, the terror of joy, joy and grief. There's a quote here that says, there is an aftershock to joy when you can't share it with your person. That was a quote from your...

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joy and grief chapter in your book and talk to us about why joy feels risky and dangerous even in the context of grief and loss. Yeah. Joy is a very vulnerable emotion because joy is this deep, acute happiness that often happens in connection with someone else or in connection with other people. Right? You can have a lot of

fun on your own, right? Like playing a video game. might be a lot of fun, but I don't know that anyone would describe it as joy, right? But you might have joy when you are with your child or a good friend or a partner or something, and you are sharing in something beautiful and exquisite together. When you have lost someone, joy being such a vulnerable emotion can feel very

terrifying because it's this acute moment and it can feel very fleeting and it can feel like, you know, I think initially it can feel like there is nothing beautiful in the world that is worth the feeling of joy because this person isn't here. And how selfish of me to think that this world is beautiful.

when my person has died, right? How could this world possibly be beautiful if it has taken this person from me? There's a resistance to joy because you're almost admitting that something is great, something is wonderful. And how can anything be great or wonderful when in the background you're thinking this person is gone? For me, I felt like it was selfish to be happy. How could...

I'd be happy at a time like this. Right. And it took me a long time until that little voice inside my head started responding a time like what? This is it. This is the time. This is it's all you got, you know? But it is really scary to feel that. And it's scary to feel joy when you have also experienced that joy being torn away from you. You know, if you don't love as

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anyone else as deeply as you did, then you will never have to grieve it deeply, right? If I just close myself off to everything and if I don't have anything that I love deeply and vulnerably, then I don't have to go through the experience of losing something that I love so deeply. So it can be very, feel very safe and comfortable to close yourself off to it.

Right? If I don't feel this deep joy and, and, and love, then I don't have to deal with the loss of it. And so joy does become very, very scary because you are opening yourself up to loving something and experiencing something that you might one day need to grieve and who I don't want to have to go through this again, you know, but

but we will, it is very easy to just say, don't want to, I don't want to feel the grief and loss end of the emotional spectrum. And so I'm just going to cut out both ends of the spectrum and I will just live right in the middle and never open myself up to feeling something so positively that I might ultimately have to agree. And I think what you said in the beginning about, you know,

about bringing joy into our lives is really accurate. And there's a great visual that I've seen many times that I think is very true where your grief doesn't get any smaller. Your grief remains the same size, but your life grows around it and that joy grows around it. And that hole is always gonna be there, but we can...

continue to build a life around it that gets bigger and bigger and bigger. So the grief takes up the same amount of space, but with more life around it, it's less acute, you know, and there's more joy to balance it out. For me, it was very difficult to get to that place where I could allow myself to feel that kind of joy. you for that. And it is a process and it's something that we arrived there ourselves. There can be a lot of pressure.

griefandlight (56:35.416)
pressure on grievers to be resilient and make meaning and all these things, which I'm a firm believer that it really helps and it helps live a meaningful life and a beautiful life. is joy after loss. Somebody asked me that recently. How did you, do you feel joy after loss? And I can say unequivocally, yes, absolutely. Because I've made meaning, but getting there is a very personal process and it's very much on our own timing.

For the listeners and viewers, it's been approximately 15 years. It'll be 15 years in October. And you had a lot of the parts include Ben's journals, which you didn't open until 10 years after, from my understanding, correct? Mm -hmm. Yeah, so, exactly. To give you an idea, everybody has their own process. So if you're early on in your grief and you're listening to this and you're feeling like, I have to get to this place, you will probably get there, but on your own terms.

And what I love that Annie did here with Always a Sibling with a Book is not just share her story, not just give visibility and a voice to grievers, but also provide tools, very beautiful, empathetic, compassionate, kind tools, gentle tools and effective tools to help you shine a little bit more light into the part of grief that feels heavy and can make you feel stuck at times. Provide a sort of roadmap.

to how she did it, provide a sort of to how you could do it, mixing it up however feels good in the moment. And giving us language, there is one part towards the end that you said we need two things, language and an audience. That was so effective because even like I said at the beginning with all the work that I feel I've done, you gave me the language to put it all together in a sequence in an orderly way in my own mind and my heart.

that I said, my gosh, not only do I feel validated, Steen, but I now have the words to use and I now understand the power of where I need to go. So thank you for that in my own journey. And I know so many siblings will also find this very helpful. If you are a sibling, I cannot stress enough from the bottom of my heart, please get the book. This will help you so much. This will help you feel seen, help you understand what's happening, give you tools to navigate the experience.

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in a way that is very relevant to the sibling lost experience. If you know a sibling who's grieving, please pick up the book and gift it to them. It is so, powerful. I have other books that I've read from other authors that are very good as well. They're very helpful, but I can honestly say from personal experience, nothing has helped me feel more seen, validated, and understood in my grief as a sibling than this book. So thank you, Annie. I really appreciate it.

And I think that from the bottom of my heart, there's so much more in the book that I would love to get to, but we would literally be here hours, days, maybe you could do a whole series on it, which I'm open to if you'd like, but there's just pick up the book and navigate through it. With that being said, how can people get a hold of you in the book? And of course I will link that in the show notes and also touch on anything that maybe feels relevant to something that's in your heart right now that maybe we didn't touch on, or if you feel that the conversation is complete for now, then we could leave it at that.

Please do find me. I am most active on Instagram. It's at AnnieSklaverOrenstein. Same handle on TikTok, so I'm still getting my bearings there. So you're not going to see quite much there, but Instagram is probably the best place. And in terms of what is still in my heart, you touched on it a bit earlier, but one of the things I was thinking about this morning, my brother Sam lives in LA.

and I work in Connecticut, my parents are in Connecticut and he is back here with three of his four kids for a few weeks. And I keep going back and forth between, I'm still having my whole family here, this is so great, everyone's here, my nephew is off traveling, everyone else is here. And then I have this little piece of me that's like, well, but not everyone else is here. And I think that it's gonna be...

It's going to be 15 years in October and I am pretty confident that I will always have that feeling. Whenever we're all together, there will always be that moment of, but we're not really all together. One of the things that I try to do for myself is remember that that's okay. What we have is a wonderful and beautiful thing. And while it'll never feel

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complete in the ways that I imagined. We can make a new beautiful thing out of it and we can talk about him and we can make it feel like he's there in a lot of ways. I think the thing that I consistently miss the most before I'm going to start crying and the thing where that I haven't been able to find a little, I don't know, a tool for it's like.

we're not going to feel his hugs. You know, we talk about him and, and feel his presence and make sure that his nieces and nephews all know him, but they're not like, they're not going to feel his hugs. And, and that makes me really sad. and I, and I miss that. And sometimes I feel like, that's, I would give everything just for that one hug. and so I guess what I'd say is,

It's okay if it never feels totally okay. You know, that's part of not diminishing our loss. And that's part of recognizing and validating it is we can do everything in our power to make this really terrible thing as, as palatable as possible. But it's also okay if you're just like, I just want a hug from my brother. I'm not going to get it. And that sucks.

And like, and we don't have to make that better. We don't have to try to, you know, fix it or solve it. It's just a really shitty thing that's going to be a shitty thing, you know? And sometimes I think just letting myself sit in that for a minute and like really feel that and allow myself to be sad about that without trying to.

somehow fix it or make it better has been really helpful. So I think that's something that I've been thinking about a lot and I hope other people can allow themselves that grace and that understanding that sometimes there are just things that you're sad about and you can just be sad and that's okay.

griefandlight (01:03:48.216)
This grieving sister sees you at the end of the day. We just miss them. We miss them so much. And this is how we get to love them. This is how we get to know Ben and Sam and your story and each other's stories. You share many people's stories in your book. So thank you again, Annie, for your work, for being you, for taking on the challenge. I know that Ben has a lot to do with this beautiful work. And we see you, we see him, and we see...

all the other siblings sharing their truth as well. thank you. It has been an absolute honor. Thank you. Thank you. Thank you so much.

for being you and always remember you are not alone.