Finding Meaning in Life After Loss

Hi everyone from New York Magazine and the Fox Media Podcast network . This is on with Cara Swisher and I'm Carol Swisher. Part of the reason I got interested in longevity and aging is because, like so many people in tech, whom I've covered, have become obsessed with living forever , like literally . There's a grandness to everything they do, so this is no different. I also think it's really interesting to think about what survives you, what are memories in the digital age? Can you change and transform them? And so I think it's really important to talk about those topics, but I'm not a fan of the idea that you should live forever . The only way to hack death is to remember and memorialize those who have lived. So in the final episode of Hacking Longevity Series here on the podcast , we're talking that way of thinking about death, preserving the memories of those who died and the messy humanity that comes from dealing with death. Later, I'm talking to Daniel Crittenden who has written the brilliant and deep ly empathetic memoir dispatches from Grief, a mother's journey through the unthinkable , about the death of her daughter, Miranda. She's preserved the memory of her daughter in a beautiful way. And we start the episode with technology that is preserving memories, of course. I'm joined by Valerie Jones, who I met in the course of my reporting about aging and longevity. Valerie is the CTO of a company called Storyfile, which is a tech company that uses AI to create interactive video experiences. They can create the digital twin of a person, which they did for me, the Keratar. And the Keratar exists. They put in all manner of things, they taped me, they used stuff that documents that were about me, things I've said, and it created a really strange and also uncanny experience. I can't say I loved it, but it was interesting and you can see where all of this is going. And I will tell you the Karatar got smart every second I spent with her , but I'm not so sure I want her to meet my great grandchildren. We get into the tech of course, but also the ethics of this and how it could end up being used in the future, sometimes for bad and sometimes hopefully for good. It's a good conversation, so stick around Support for this show comes from Color Health. The body sends you answers to important questions every day. How's your digestion? Are you drinking enough water , but most of us don't know how to interpret them? For over one hundred fifty years, Kohler has redefined innovation and craftsmanship in the bathroom. Now Kohler Health is reimagining its role in personal health with Dakota. Dakota is an attachment that fits discreetly on your toilet. Learn more at Kohlerhealth. com and use the code Kara one year for a free annual app membership when you purchase Dakota Valerie, thanks for coming on . I'm glad Alex for inviting me. Yeah, thanks. It's good to see you again. Last time we talked, there was a weird creature near us us around, which was Kara Swisher, who I didn't much like. But Carol Swisher the Avatar, no, I'm kidding, I'm kidding. I didn't think she was weird. I thought she was she was nice. She was she was better. Yeah, she got better. Let me explain. This is an avatar of me that you had trained on things I've written and said, I called her the Keratar . You're the only person on Earth, I believe, has had face two of me at once, which is quite an accomplishment and I appreciate it. It was interesting. And for those who haven't seen the series, it's actually sort of a three D version of me that was trained on me. And we did some questions and everything else. And then you did other things, but I want to talk about it a little bit. I want to start with that experience, which was interesting and a little uncanny and honestly even unnerving . I've described it a bit, but I want to have you fill in the details of how it worked. Yeah, thanks for that intro. Yeah, so what we did with you was blending two different technologies. We do interviews with real people trying to convert them into these digital doubles. That was started off when we were interviewing Holocaust survivors working with the USESHO Foundation . And the problem we're trying to solve there is that how do we keep these stories alive for ten, twenty, fifty years from now when you're not going to be able to go into a museum and have a docent or someone volunteering there to talk to . And by interviewing real people, we could then search those videos to playback compositions so you feel like you're learning these real stories. So in your case, we actually brought you in and we interviewed you for about two hours a lot less than we might do with a veteran or holocaust survivor. So the second aspect is what we call our look alike technology and that's using a generative video and a more sort of large language model to simulate videos on the fly . And what that was able to do is as you were asking questions that we hadn't prepared for it could synthesize a result. And that was drawing on other reference material, like your book, your biography, other articles you read. There's lots of video of me. There's lots of stuff for me out there, right? Yes, there so's a lot of reference materials to try and capture personality , your style of speaking, your interviews, your opinions . And even then, I mean, it's a custom thing we built for you in that case. That's a created two way conversations where it would actually ask questions of you, go back and forth. And that was kind of my favorite part. Right. And so let me be clear. Did you use videos of me or I've done hundreds, thousands of interviews? I've done thousands of podcast s. Were those integrated into it? So the real time look alike component at this point was just based on text reference , but it was also trained on the voice from your interview and your appearance from your videos. So we could sort of make them look seamless and blend between the two. Right. So hopefully people wouldn't notice. What was really interesting was that it really was learning in real time, as it was talking to me, I felt it was, maybe I, you know, hallucinated that as they say in AI. Now one of the things that really caught me off guard was the goodbye. I say something to my kids that I do not say publicly, see you wouldn't want to be you. And I say that a lot to my kids. And I can't recall anywhere I've said it publicly until this taping. And it's and when I said goodbye and I was thinking, oh, should I kill this thing at some point? I thought , you know, my why did that surprise me? I just don't recall saying it and maybe I did somewhere, but it got the exact thing I would say when I was saying goodbye to it. And so that was that was unnerving, I would say I think you actually mentioned that during your interview. And I think that's why it's really important for people to have these interviews because if you're just hallucinating everything , it's not going to know your actual personality, your things that are unique to you. So talk about the challenges of the technology at the moment. There's latency, as you know, and you could feel that a little bit, especially in the ones that was the retrieval , but which I had taped. And you have to figure in the realism of the facial expression, the eyes . Talk a little bit about where we are now and the biggest challenges you see at this moment. So yeah, when I started doing this fifteen, twenty years ago, people would create these three D elaborate models of the face and trying to model all the geometry and the interfections of the eyes was really difficult. The difference right now is we're now transitioning to using more sort of video diffusion models things like what people heard about SORA and all these other models , that are really just learning from all the videos that are out there on YouTube and on the internet . And they don't explicitly model like this is what the eye works, but they create plausible , I'd say eyes . I think the challenges right now is a lot of those faces still look a little bit too generic . Like everyone has a certain sort of studio light smooth, glamour look , right? It's smooth, smoothness. Yeah, right. Whereas I think what make people's faces look real are the imperfections. It's all those wrinkles and pores and skin details that make someone look like a real person and not like a barbie doll . And I think those are still missing. They can create very realistic eyes, but it's justifying why are those eyes smiling and connecting it back to what they're saying is the loop that people are really working on. Right, that people do naturally, right? People are doing so well. Right . One of the things that it also, when I said , well , you should smile more. And it made a joke finally after I was saying, I'm funnier than you are , and you don't have enough snark to you. And they said, I am smiling. It's just I'm, not showing my teeth, which was funny. The way it was kind of a weird, but kind of great answer . But it doesn't smile and it doesn't, like maybe I didn't during that taping or something, but you'd think I was thinking, why isn't it why isn't the generative version smiling more essentially? Maybe I didn't smile enough or something. I don't really know. The generative version for the most part based on your listening resting pose during the interview. If someone goes in with sort of resting bitch face here , I was gonna say it. That's okay. You can say it. Okay , many straight white men have said I should smile more, but go ahead, go ahead. Yeah. So if you're smiling more in the reference image, then it would be smiling more in the generative video. Oh, interesting. I think the more exciting thing is when it's doing that dynamically . And if it's cracking a joke, it's making the appropriate facial expression for the joke. Right. In that case, it was making the most of its limitations. So this is really sensitive and emotional work, obviously. You're preserving people's memories for grieving families, for historical purposes, so certain stories don't disappear, which is a laudable goal. We'll get into the problems people have with AI in a second, but why is this something you personally wanted to do. Before I did this, I was sort of coming from a visual effects background doing movies like Avatar Blade Runner . And it was all about the technology . And the first time I actually met a Holocaust survivor. I realized I kind of had it wrong. It was about story. It was about sort of the human connections that people were building . And I really wanted to expand that. A lot of people exist in their little tiny bubbles, the sort of echo chambers . And being able to go into a museum and talk to someone who comes from a completely different background from you, a World War two veteran or a civil rights leader or an astronaut and then being able to build those connections and saying, Oh, they went through this thing and I can see that in my experience . It sort of is breaking people out of those bubbles . Are there other histories that are working you're working on preserving like folks involved in the civil rights movement, survivors of the Vietnam war, indigenous communities, languages quickly disappearing? Talk about this idea of preserving history rather than the way it is preserved , which is often based on whoever wins, right? Well, I think first person narrative and old history is one of the oldest, it is the oldest form of history going back in thousands of years . And the ability to have someone talk to you is powerful because you're engaged. It's an active form of learning as opposed to passive learning . So that's important. We have to applied this for a lot of different cases. We have done there's the Medal of Honor Museum in Texas . There is we join Veterans at the National World War two Museum in Louisiana . We have been talking to various Indian tribes about doing language preservation the same way . So I think for education, there's a lot of power there making it engaged but people obviously can use create a digital record of their loved ones before they die and it can be very intightly tailored, which has answers certain questions . Talk about where it could go because this is like I was thinking, do I want my great gra ndchildren who will never meet to see this version of me? And I wasn't so sure . You know, I kind of were like, well, maybe they shouldn't see it at all. They have plenty of online video of me that's real . Do they have to have one that responds? And it was it's complex. They never really answered. I wasn't sure. Part of me, you know, I was thinking of my dad, I kind of would like to see a version of him in movement that's not on a video screen, right? It's not a movie , you know, a home, a handheld camera version of him, where he responds. So talk a little bit about this . And what are there some applications you're working on? It's really important stay authentic to the original source. So if you go to the World War two Museum , it is not generating any videos on the fly. We might interview someone for five days straight to make sure we have enough content. Right. Now, if you were talking to your father, right or your kids were talking to your father , then I think that would be kind of different because you want your father to be able to sort of listen and say like, oh, I hear you're going through this hard time and sort of acknowledging that and then personally telling a related story that's based on recording. You record. It sort of makes the conversation more . Real. It's a two way conversation with people listening to each other because you could just point a camera at an old person and say tell your stories, right? And that's different than a conversation, right? Now, what part of what we're working on is trying to make this technology more accessible . So not everyone can have a professional film crew come out like we did with you to film them . So what we're working on is sort of an AI biographer that can do the same thing. So you can have an AI be the interviewer and help gather all these stories , coach you on being the best version of a storyteller you can be and then feed that into either the retrieval based or generative . And that's really depending on the comfort level of the person you're interviewing. But extrapolation is a big issue. Would I say that? Would I want them to think I said that? Right? If I didn't say it , you know, and you could extrapolate, but for me, there's so much video. You know what I think, right? But not for everyone. And so that to me was like really like, is this the memory of me or is it not is it a f acsimile , right? A Xerox copy essentially. And it was a really interesting discussion that I had with family members. It was like it won't be. And maybe it shouldn't be. And so it was an interesting thing, but it certainly is a facimile, correct? Is that how you look at it? A facilite or something ? Yeah, I think it is, and that is when we're not actually making someone live forever. Your consciousness is not being transferred here . However , the ability of you to form human connections is being preserved in some way in that your grandkids could feel that they have a connection with you in a way that previously wasn't possible and be able to identify with you. And if you think go back fifty years , people might not even have recordings of their grandparents . And then we have static videos of and now we have like social media. You can go to your parents' social media site , but that's very different from in person communication . So hopefully we can take a lot of the information that is on social media that people are recording repurpose that into these conversations. So it isn't just hallucinating, it's based on some kind of fact . Right. And so I know this isn't cheap, but compute that you need to answer basic questions must be high. And talk to me about how you make sure this isn't an expensive toy or the cost coming down or worse than a vision of the future where something like this really takes off. How do you guard against only the super wealthy being able to preserve themselves digitally and then all these other lives lost. The basic retrieval version is actually not a high expensive AI process. It's not massive data centers It's a search algorithm searching videos to find the best results . That could be running on your local computer . The video synthesis is I would say more computationally intensive, but it is becoming a lot faster and a lot less intensive than it was before. But the I mean the amount of cost that we're talking about here is sort of similar to like people having a subscription to my heritage or ancestry. com . So I actually think the limiting factor for most people isn't necessarily the competition involved in the generation . It's convincing people to spend the time recording and capturing these stories. Like spend the time to talk to your parents . That is sometimes the hardest part of the process . And part of it is just because a lot of people are humble. Well, why would anyone care about my story? Like why is my story worth telling? But if you then talk to the kids or the grandkids, they're like, Oh yes, I would love to get grandmother's stories . We'll be back in a minute Support for this show comes from Choler Health. What if the most routine part of your morning could give you valuable insights about your health . Kohler defined the modern bathroom. It's where your daily routine already happens. Now it's bringing health tracking into that same space. That means automatic insights into your hydration, gut health, and irregularities that often signal a flare up . How? Color Health Dakota slips seamlessly onto your toilet and passively captures your everyday biometrics. Without any manual logging, you'll see hydration and digestion patterns and even be alerted about the presence of blood in the Color Health app, giving you a clearer picture of your internal health and helping you build habits that truly work for your body. I'm very excited actually. I have a lot of these things like the Aura Ring and an Apple Watch and things like that. And it's actually something used in other countries. And so far, I just installed it so it was super easy to put on. Now I'm really eager to find out how healthy I am and figure out ways I can make changes for my health based on the information I learned . So learn more at Kohlerhealth. com and use the code Kara one year for a free annual membership to the Kohler Health app when you purchase Dakota So let's talk about the ethical limits of this is an area of interest for me. Walk me through some of that. How do you approach it and how do you safeguard it? Well, I think the first thing is to really clearly label what is real and what been' sysnthesiz ? And when it has been synthesized to be able to cite and say this is what it's based on. This is based on your book. This is based on the social media post. This is based on this interview. And there are standards out there to do it. Things like the content authenticity initiative , which were various companies are involved trying to label and watermark their content. What's real? What's real? Yeah, because there's so much AI slop what',s real is less, right? What's actually ? Unfortunately, most a lot of content isn't being labeled. And for it to really work , it has to go back to the source. Like the camera or your cell phone needs to be encoding that information from the very beginning like this was recorded on this date with this time and this point through . And we did a project like interviewing people in Ukraine and sort of going through and like people telling what was happening. And it was really important in that case to show confidence of like this . This is a rail. Right, right . The second part is setting guardrails on the interactions. So if we were in a museum, as I mentioned, like the World War two museum , if people were talking to a veteran, everything is going to be actual video that was recorded. If someone goes in and says , Where's the bathroom? Like the avatar is not going to come up and say the bathroom's down there on the left. What we have there is a separate identity, a generative doccent that comes in and can answer those questions and say fill in the gaps. In the case of actual people recording their parents , then it comes back to the will of like people clearly stating what is their comfort level of genitive do you just want to be ? This is what it says have full control. Do you want to say I'm comfortable with you synthesizing but only if you base it on these photographs, these social media posts, these documents . And then some people saying as long as it follows my personality I think we're getting to the point where people are going to take personality tests, like the big five tests and say and say , Are you outgoing? Are you introverted? And the way I can mimic that. Now, the other speaking of mimicking, there's some real harm that come from interacting with a chapot. I've done a lot of parents whose kids who have committed suicide And people beginning to regard it as something more than a computer. That's the danger. And it happens immediately. People of course need human friends. It's something I talked about, and it's very good for your health. I interviewed Sherri Turkle and a bunch of people, like the seamlessness is problematic and the sick of ancy at the same time . I can't imagine it getting worse, but it's going to get worse when AI avatars that look like you versus just these sort of generated cartoons or voices or text , talk about the guardrails around that because you could get into these very intense relationships with Keratar and it's not me, like in the future , for example. So I do think having it based on a real person does help because you're grounding it in reality in a way . I think the second part is having the avatar have a clear objective . Like a lot of these sort of personal assistants, they're just designed to please you. Like you're already right . So if you establish a purpose that this is here to establish common connections between your grandkids and mysterious stories, then it's really it's adding these guardrails to say I'm just looking for the stories that are going to establish connections. You mentioned the idea that people need to be comfortable with all this. Describe the legal landscape here because it is complicated . There is a national law, I think that's been proposed called the No Fakes Act that would basically say that your rights go on for seventy years and that it is your estate, your family who control it . So in those cases , there's quest thision of like do the laws cover just commercial use or is it something that's just existing for your kids ? And hopefully the laws can be flexible enough , but ultimately I think this is something that talks to your parents and put those things in your will of like, this is what I want to happen to my likeness . Because if you don't spell it out explicitly, you don't have any control. So to come back to the premise of the series, it's about aging and longevity and whether we can forestall or even defeat death, which we cannot. My joke is Scott Galloway's which is biology is undefeated . As a lot of tech people seem to believe we can, but they also are very enamored with this idea of continuing on and developing , you know, their brain goes on. This technology doesn't defeat death. What do you what do you think about that? And what does it do? How do you think of the technology ? So I don't think it defeats death. I don't think it necessarily changes the grieving process. It can become part of the grieving process, but it doesn't change the grie f and it isn't a conscious transfer. So that's why I keep saying again , enjoy the time that you have with someone and if someone people call us up and say, Okay my grand my mother died two months ago and can you bring her back ? And the answer is, I mean, yes, we can. But my next question is like, well, what stories do you want to tell? Like did you actually go have these conversations with her while she was alive? And can we I want to we want to be faithful to that. So it's much easier if people have gone out and they've had their conversations with them, gone talk to them beforehand, you're never going to regret that. You're never going to regret the time you spend with your parents or with whoever it is . So ultimately my message is not about the technology. It's go, have these conversations. You'll enjoy it both when you do it and you'll enjoy it ten years from now, twenty years from now when you get to real it. Is there something though problematic with wanting not to go? See, I always see the worst case scenario where this could go. And you're very obviously a hopeful person and you see it as a good transformation. I see it as a Oh wow, this could go seven different ways wrong, right? That kind of thing. Well, me personally, like, I mean, I would want to be remembered, but I mean, for me it's like, I'd want to be remembered as like, oh, that was someone who made a positive impact in the world. And from that that perspective, would that be my legacy, whatever it is . I mean, I know it's yeah, biology's going to live out. Hopefully I can have make the most of the time I have longer life, healthier life. Longer life . But I completely understand people who don't who just want to fade and move on to whatever comes next. And then what about those who want to like live forever kind of thing? I mean, don't die is their thing. You know, they talk about moving things out of their brain into another creature, that kind of thing. Like another physical creature. If they want to like freeze themselves and come back in a thousand years, then for a robot, put your brain in a rob . Well, then a thousand years from now they can go and talk to their story pile and learn what they really were like and recover all the memories that got lost in the freezing process. Yeah. I don't know if I'm serious about that or not. Yeah, yeah, well you just thought of something. They could. You could imagine it happening. So imagine fifteen years from now when the technology is far more advanced, how do you see it working then? Does it go into a robot? Does it become a physical manifestation? Like if we could make a new body, you know what I mean? I'm not talking about zombies here, but there's ways to do this. There presumably will be ways. If you can imagine people have imagined the future in Sci Fi that now is happening now many years ago. So what do you think the way it should go? And what's with me, what's your biggest worry about the way it could go? So I could see someone building inter ropolate if they had the ability to be able to go out and I mean experience new things, right? Like if you can have your digital version of your grandmother coming with you to the zoo , then maybe you could bond over something there if again it's technically possible it's a question of is that something you're comfortable with? I think that the technology for displays is going to continue to get better as far as making it feel like someone's actually in the room with you . Is it going to feel is it feeling a zoom call or is it on a large screen or VR headset? All of that technology is just going to get better. So last question, what happens to the Keratar? Where does she go? Where is she? What's she doing? Well, ultimately, that's up to you. Right now she's not doing anything. She's just hanging out in like some file somewhere? Well, yes, but it is this is your story. And I mean I would hope that you would want to share it with your kids or at least . All right, so I shouldn't kill it. I shouldn't kill it. How don't kill I say you shouldn't make the decision as to whether to kill it. Ask your kids and say what they ask what they want. All right, well I need to get control of it so I can decide whether Karatar should live or die , I'm not sure yet. I've got to think about it. And I will talk to my kids. You're right. Yes. All right, Vali, what you do is really beautiful, I have to say in a lot of ways. And I really, what a great experience. It was really interesting, especially from thinking about what memories are in the digital age, which are really complex, and I really appreciate the work you do. I appreciate it. And I really love getting to meet both you and your digital capitar. All right, we'll talk about me taking her in., but we'll see We'll see where it goes. All right, we'll see how we get along because Karea's a pain in the ass. I'm just saying. Anyway, thank you, Val. Thank you . We'll be back in a minute. Support for this show comes from Kolar Health. Everyone's looking for more information about their health. Watches, rings, and monitors can give you a snapshot but they don't, always show the full picture. Meanwhile, what if you've been flushing away some of your most valuable data all along? You probably have. 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This episode mentions Thoughts of death by suicide in the context of grief. If you're struggling, please reach out for help. In the US and Canada, you can call or text the National Suicide Prevention Lifeline at nine hundred eighty eight time for immediate support . As I described earlier, the idea that these billionaires have, that we can live forever is a dream that's being sold but can never be realized. The only way we can survive beyond our death is to be remembered. That's why our final conversation in the series is with author Daniel Crittenden. She's a journalist and author and the former host of a great podcast called The Fem Splainers , and she's written a memoir about the death of her daughter, Miranda, dispatches from grief a mother's journey through the unthinkable. The book is incredible, incredibly moving, actually, and it's very easy to read because Dan isiell suche a gifted writer and observer. She's sharp and witty and smart, but it's simultaneously so hard to read because the topic is unbearably sad. And her portrayal of what a mother goes through when she was a child is unflinch ing. And for someone who has a lot of children it's really hard to think about. I don't like to think about this topic and it does creep in from time to time. Everybody wants their children to survive them. And when that doesn't happen, it sends a chill throughout anyone has kids. And this book certainly did. I'm very happy to welcome her on the show, Danielle, thanks for coming on . Thank you for having me. It's a true honor to be with you, Karen. We should start with Miranda first of all . The remembrance that emerges in your book, as I said, is beautiful, is singular, it's powerful . There's a lot to it. So let's begin with that. Talk a little about her so people understand. You describe her as living life on her own terms kind of from the very first instant. And I know how that is. I have a lot of kids, so I immediately sort of that struck me. Well, she was our first child. So with your first child, you have no training . And when the child doesn't turn out the way you expected after all your very careful parenting . Miranda was just from the get go, her own person, super willful, made our hair stand on end throughout her adolescence. And then she developed into this just fascinating , courageous , adventurous , glamorous young woman . And once we got through the sort of early stuff, she wasn't just like a daughter to me. She was she was truly my best friend . And so when she died very suddenly from the consequences we would learn later of brain operation she'd had five years before it was completely unexpected and to all purposes she was healthy. So that when that kind of tragedy happens and also it's a child, you're just thrown into another dimension ab ofsolutely grief and also another dimension of existence. I mean it is I call it the alternative universe. Your life and you have changed forever. Well, it's a similar idea that my dad died when I was five and it changed everything . It's sort of the opposite perspective of yours, which I think is I couldn't even imagine. But I want to talk just a little bit more about Miranda. She was kind of fearless at age twelve. She strode up to Dick Cheney when he was vice president and said I have some, questions for you. I like that. I love that idea. But what are the questions? And how do you liked that? I mean, any of those kids knows kids are the way they are. Well, you know, she grew up in Washington, DC and around our dinner table, you know, my husband and I were both journalists and connected following politics. And they were always encouraged to speak their mind, to ask questions. And then every summer at that time, back when David , my husband was a Republican, we would go to this annual retreat hosted by his think tank of the time, and Dick Kenney was there . And Miranda and her friend had started their own newspaper, quote unquote called The Animal and just walked up to him and she said, I'm Miranda Frum of the Animal and I have some questions for you . And then he bent his head like he was very obedient and answered whatever you know whatever she asked God knows what it was. But yeah, she was just like that. Now one of the things you noted, she had a generosity to people, especially people who seemed like they needed help or out of place or needed a friend. You describe that beautifully . She had a depth that even though she presented as this kind of cool , you know, beautiful woman who you wouldn't want to cross because of her ability to come back at you . She could just see right into people. And she had a great empathy and compassion for people who were struggling and she, you know, she took in what we began to call her strays. She just had this an addition to a circle of friends that span the world, she also had these people, including myself who depended on her for advice and you know to talk things through. She was she was really a profound soul. Can you talk a little bit about the memories that come to you? Every now and then something pops not because of a photo, just some moment with one of my kids pops into my head. And then it goes away. You 're all not these different moments and memories . Talk about preserving them because you didn't presumably you thought she would outlive you versus the opposite. Yes, of course . But talk a little bit about this idea. Had you thought that the memories were not going to be as many as you thought or had it ever occurred to you before this happened? Miranda was born pre internet, so I had albums early years and then you just have all these photos unsorted on your computer . You don't really think of it, and you'd also don't think of looking back on them as being traumatizing. What's weird in the digital age is I call it like digital haunting that now , whether you like it or not, your phone will pop up with a curated carousel of here you were in twenty eighteen. You know, remember you and Miranda did this ? I describe as like having an IED explode. Like there you are thinking you're composed and then suddenly this memory hits and you're leveled again. Gosh, I opened a box and it had all her journals and I'm sure copies of the animal in it from when she was a child. And just to think that that life stopped. And these things , I call them like relics with no reliquary. Like what do you do? What do you do with them? What do you do with her apartment keys? What do you do with her driver's license ? So I built a kind of little relic where I can keep the things I don't want to throw out , but were just so personal to her. I used to think I was gonna have a Viking funeral, put all my stuff on it and then my kids shoot arrows into the ship as it sails away and then everything burrs and it's gone. Like God because I often touch things. I'm like, oh, this is going to be here after I'm dead. I think about death a lot. Yeah, but how do bur your in digital , you know? Right. Like that's not you can't just throw the letters into the fireplace . Right, right in a dramatic fashion. Exactly . When you talk a little bit about what happened, describe the medical scare that was around twenty eighteen when she had some vision problems, you eventually discovered she had a tumor, very rare. And there's a great line you said to her, of course, you would have had such an original tumor, which made me laugh . So talk a little bit about this. Her vision had always been terrible. She was home at Thanksgiving and she had these problems. And as it turned out, she had this tumor, and God knows how long it had been there. It could have been there for years . And but it was vascular, which meant if you tried to remove it without knowing what it was, she would brain hemorrhage. I mean, it would be like a bomb going off in her head . So we had to find the surgeon who could do it . And in the course of the surgery which was very successful , thank God, it had eaten her pituitary gland . And although you can function allegedly per,fectly normally without your pituitary gland. You have to take hormones, you have to take medications to offset it . What they don't tell you is if you get these, especially like your cortisol . If you don't get that exactly right, you could suddenly drop dead . And I think what was happening was she was been five years and she'd actually gotten to a point where she felt really good about herself. Like it affects mood, it can affect weight. So she got she had got everything managed. And she was about to throw a five year tumor free , successful entry , you know, I'm great party . She was going to serve tumorinis and MRI goritas and she had all this for funny things and and she died you know two months before that anniversary. Now you describe it about hearing about it as entering an alternate universe, a meteor crashing into your personal galaxy. And the universe , presumably, as you know, it destroyed forever. Just talk about that in terms of because I think people , as you said, before we talk, that people try to avoid talking about it, you know, talking about what happens. And I've had several friends who've lost children. And that's one of the things that upsets them a little bit that people tend to try to avoid it. But it's also impossible to understand if you haven't been in that universe. Exactly, exactly. So first of all , yeah, you're catapulted into this alternative universe where the minute you've had that phone call, the minute you've learned that your child is dead , your life and certainly at that moment feel s like it's over. It's completely different. Although everything around you looks the same, the chairs are still in the same place , everything is different. And one of the things you learn is how well populated this alternative universe is that there are tragedies of this kind happen every minute of every day . But if you've never been in it or experienced something like that . You can't understand. And in the book, I expressed great sympathy for this. Like I didn't get it. I mean, you know, you try and if a friend suffers something, you want to be there for them But you don't when they say, I can't even imagine, it's like, no, you can't imagine. And you know, I'm glad you can't . And it's not just the world that changes, the world that is now succinking, suckingly absent of your child. I mean , your child has just imbued every corner of your house, every walk that you take, every supermarket you've walked in like literally the child is everywhere . But when I say that Miranda became my best friend , you've also changed, not just in somebody who has been struck by lightning , but also you're never going to be the way you were with that person you've lost. I'm never going to be that mother in that way that I was with Miranda. Right. So to it. It just hits literally aspect and corner of your world. One of the things that a lot of people have lost a child is you know tell you there's not a road back to who you were . There's no map to take you there . Right. And I had a really interesting encounter and I wasn't sure I said the right thing because you are worried about what you say when someone's lost a child and I knew you shouldn't not say anything because when because a lot of people don't say a word, like they pretend it doesn't happen sometimes because they don't want it to happen to them or you know that kind of things or just the they don't want to imagine it in their lives then. And once you imagine it you feel it. And so I just said, well, that sucks. Like this is terrible. And they were like, thank you for saying that. No , that's exactly the thing to say. Yeah. Yeah,. yeah And they were and they were like , they go all these people say, you're going to, it's gonna be better , right? And I go, But it isn't, is it? Because I know when people say about my dad, they're like, Oh, I'm so sorry. I hope it's better. I'm like, never never it's going to be better. There's no better, there's no way back essentially. So talk about that idea of change of yourself and how you deal with the memories at the same time they're everywhere, everywhere you go, as you said . The main thing you want is for someone to lean into the suck that when someone sees you and they don't they love you, they want to comfort you and they want to find some way to make you feel better. And then but you don't want to feel better. And you don't want to, especially in the early phases, you feel, if I feel better, am I dishonoring my love and memory for my child? So I think you did exactly the right thing. The best thing you can do is say this is terrible . Oh my God, can I get you another drink? You know, like that's what you want to hear and you want people to be there for you . So much of grief especially in America or just, you know, general American shoved down where no it's yeah, it's more like you're failing at grief if you're not getting over it or you're not getting through the tidy st ages that we all imagine exist, but don't. And I think many people get very lonely as the world moves on, as their circle moves on, their friends move on as they do, that they're just stuck there because you do not move on. I think what happens and I'm sure this is true with your dad , you learn to carry it . You kind of it becomes part of you like a wound or a chronic I think of it as like almost like a chronic illness . And you learn to carry it and slowly you're going to adapt around this to trying to not recapture but rebuild the person something of the person you were and the person you are now which is a big difference which is which is a big difference. Like you've got, to learn to carry this pain. You've got to learn to carry this sadness . You've got to learn to be constantly confronted by these memories because this is your story now. This is your story . This is your narrative. Like your narrative has shifted a Philip fictional book. And it's never going to get better. I call them in the book Happiness Hucksters. This is deeply American . This is, you know, the worst thing that has ever happened to you, you can now grow from, you know. This is I remember those. Miranda died and now it's not all terrible because you can learn grow . Yeah I'd rather not. Yeah, it just sucks. It just sucks. Somebody used to do that to me. They're like, Oh, you'll be okay. I'm like, it won't be, but that's okay. Like, I'll just be this, I'll be whatever it happens to be. Exactly. So you wrote, of course, how speaking of grief, how hard it was at first to find therapy, and Americans are uniquely bad at grief, I think . If your primary care doctor gave you a list of grief specialists, they are either not taking you clients or at endless waiting lists, given that all of us face grief in different ways, you know, some more serious than others . Why do you think it's so hard to find help? Is it because people are repelled by helping on this issue or is there just not enough addressing it as a real issue? Well, it's it's complicated. I'm no expert on our healthcare system , but I think just to find doctors who are available on any level, I even called this incredibly prominent grief clinic that is here in DC . And you get this recording saying, Thank you for calling the Susan Tuch Center on Grief. We will not be taking patients till eighteen months from now . If you're feeling suicidal, hang up and dial nine hundred and eleven. And the grief that a parent is suffering, if you had known me in the before, the idea that I could be suicidal that as a mother of still living children, I could be suicidal . You would never have believed it. But I felt the pain was so overwhelming and that's how I stumbled onto EMDR therapy which, is for treats PTSD, which is what anybody who suffers a tragedy of this kind is going through. Yeah . And that was the beginning of getting help over controlling the grief, controlling my thoughts. Of all the books you read about grief, and there's a lot of them. It seems you read all of them. It seems like you got them all. There's a single one and I agree with you , CS Lewis. The grief observed . Tell me about this book. I love CS Lewis, and I think everyone knows him for the Narnia Chronicles, but he was a very deep thinker and he had a tragedy. So many film that died of cancer joy. Talk a little bit about a grief observed. It's called Dispatch es from Grief for a Reason because I was not thinking of writing a book. It was just the journalist reporter instinct in me that needed to start recording like I'm a foreign correspondent in the alternative universe . And the grief books that I kept coming across , none of it was what I needed to know at that moment, which was how do I stop this? Is this normal? Am I crazy? And CS Lewis was the first book that I read and it's very short . And it's really because he was, of course, a very religious man , he's trying to work himself back to God, but in the process , he describes very vividly what I think he said at one point that grief is like now the sky. I mean, it's just no enveloping of his life. Can I read a you line you quot e, which is part of every misery is, so to speak, the misery shadow or reflection, the fact that you don't merely suffer, but you have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief . Right. And that just nailed it that you were . So he wrote very vividly of what I think it was in the first five months after his wife died very vividly of what it was like to experience this. And suddenly I had someone I could identify . And that sense exactly as he says, like, you go to sleep and you think, Ah , you know, God, I have to wake up tomorrow. I'm gonna still feel this way. And the day after that and the day after that . And then I started to read like World War two memoirs and things because I needed to read what other people who had suffered similarly and really how they coped. That was the thing that I needed to know. And the grief books and the happiness hucksters who kept trying to tell me that in a way, what I was doing was wrong or feeling was wrong really not helpful at all . Now you wrote at one point that the most honest thing someone told you was that one day you would manage your grief instead of it managing you . What does it mean to manage grief? That was my D EMR therapist because I said, What's the point of this? I'm never going to stop grieving Miranda. And she said, especially in those early days, where the brain is obsessing and spinning and not knowing how to cope with this terrible thing. She said you're gonna learn how to manage grief and not let grief manage you. But to me it started to feel like, yeah, like some old war wound or something that you're just constantly aware of it , but you learn to become present in a moment . We just recently had our first grandchild and that is just so joyous and wonderful . But I remember the first time holding her , I just my mind went back to holding Miranda for that first time . So every joy is going to have melancholy or sadness attached to it. But what you do is I'm learning to take that pleasure in the moment and then yeah, the war flares up and yeah , you know, there it is again. But I think that's what it means in learning to handle it. When my dad died, my grandmother, who was his mother, they were extraordinarily close . She was very jolly, you know, but I knew it never she never left her not for a minute, the whole loss, right? She got leukemia and was dying. And she asked me to move his body to West Virginia where she was before she died. And it was really something for both of us, you know, unearthing the past, really, essentially. I had him exhumed . I had him cremated then . found all the old papers. It was really quite something . And then had him sent to me and then I had them sent to West Virginia, right? I had them sent to my house, like the remains, which was terrible . And but she died the day the remains entered West Virginia, which was crazy. Like that's and I told her, I said, They're there now with you and she died. It was really amazing. I thought the burden she carried and hid in a way was really so vast that I couldn't even explain it. But talk a little bit about that idea of carrying it with you for people who have not who probably will hopefully never have to have this happen to them. I completely understand your grandmother wanting to be with her son and now where Miranda is buried , you know, it doesn't scare me . I now know I'll be next to her at some point and that actually gives me great comfort . And what is a little unnerving is that they 've found that parents who lose child , their mortality goes up as much as within five years , you're much more likely to die. And part of that is you just' notre physically taking care of yourself. You don't care about yourself anymore. Another thing is these parents will commit suicide . But also addiction is very easy. You can understand why people succumb to add iction. So carrying it, you're carrying it in all these physical ways because every part of you wants to retreat . You know, every part of you just wants to curl up and not deal with anything . And so that effort to keep going and especially as a parent or a mother , you know , marriages can just, to Itally get why marriages can just fall apart. When this happened, it was David, who, I mean, I just really wanted to crawl under the bed and die . And he was the one who , I don't know, a couple weeks into it , you know, he just held me and he said , We can't allow each other to withdraw into our own silos of grief. We if we're going to get through this, we have to do it together . And I don't, you know, I don't that landed with me and I appreciated it. And then we both made the effort because we were the only two people in the world who understood what the other was going through and what we'd lost . And of course, you know, our living two living children were going through it and they were experiencing it from a different facet . And so carrying it is having to not just carry this big stone of grief inside you for your lost child , but also being able to resume carrying the other relationships in your life . Whether it's marriage, whether it's, you know, your children, whether it's a job , job, friendships, everything and you're having to do this when you can't even think you can stand up and get out of the bed in the morning. What would you say the most significant thing changed about you I think I became much more aware of suffering in the world. And it's not that I was indifferent to it before or you know, I always live your life like it's your last day. I've always very much embraced life . And I think the thing is when you discover how many , as I said, like how many other people are here in this universe with you, including people I thought I knew well , like care if I'd known you and then I didn't know that your dad had died when you were five and then you only thought to tell to me after, you know , I'd lost Miranda. Like that's people suddenly open up that way because why would they tell you before? Because what are you going to say? Oh gosh, Karen, I'm so sorry. That must have been very hard. So everybody's those further along have learned to carry it and carry and conceal, I guess we can say And so when you enter, suddenly you're aware of it. So I'm just more I'm just so more patient with things . I'm able to let so many things go. On the other hand, I'm way more impatient with people who impose suffering . Like if you were being a dick, I just have zero tolerance for it. Now, we did talk about sort of the AI curated photo galleries. They haunt you in a lot of ways. And so I don't even like the ones, even if they're happy, I'm like, I don't want to see them pictures anym ore. That haircut, it's not , I just didn't like them before 'cause I was like, Oh, do you have to hear my picture? It's always the wrong music too . But they're bigger ideas because what is a memory now in this day and age? How do you think about memories now? Has that changed the idea of remembering people in this age that we're in? I created this very beautiful kind of garden around where she's buried and I thought to have a QR code on a little metal sign that would connect to a website like a Miranda Memorial website where you could read about her life . There were photos because I don't know if this is in a very historic cemetery up in rural place where our summer cottage is. And I don't know about you, but if I walk through an old cemetery and I see these crazy graves, I'm like, who is that? I want to know who that was. Yeah. And so this way , when people visit her grave who don't know her, they can pull up that QR code. And as the technology changes I love that we'll be able to , you know, we'll upgrade it, but up there, but it tells you about the garden, it tells you about her. And it just gives you a sense of yeah, who she was. The person was that a playlist. We have a playlist. Oh, wow. That's a great idea. You know, when people die, they tend to make you saint like, right? Like my dad nothing was wrong with him. And I was like, what was wrong? I'd like to know what was wrong with him too , right? You'd want to know the full person. And so I never knew what the memory was what was real and not real because people's memory then shifts. Do you worry about not having the right memory or what actually happens? I think memory is in every person treacher ous . And we always like to remember the best of ourselves. Right. I learned this before Miranda died with David's family that they had, and I don't know, maybe it's part of the Jewish culture , but they always talked, I'd never met his grandparent. They died ten, fifteen years before I knew him , but they had a way of talking about them like they were completely real. And I had such a vivid idea of who his grandparents were . You defy them, they're dead. You've turned them into a plaster saint and you're not remembering them for who they were . But if you remember them in as many dimensions, including as I wr ote about, you know, Miranda's willful childhood , then they stay real to you and you talk about them in real ways. And we'll often say, Oh my God, I don't even know what Miranda would say to that, you know? And then that's how they keep alive. Somebody said, you know, like if you have this concept of heaven or she's in some great afterlife, I think, yeah, but I still can't text her. It's great to text from heaven. I just want to be able to text her even. And have you ever gone to one of those mediums? You know, I'm very, I'm so tempted . I don't know what I mean some if I mean, I believe there's something and I'm a very, you know , just practical pragmatic person , but you get little signs that cannot be expl ained otherwise that are so connected to that person that you begin to think , okay are they present? Are they present long enough to get you through to what you know able to oh I keep living. You know, and there are a few things and I write a couple of instances in the book about that happening . And I like to believe there's something . I feel her with me often in ways I can't fully explain. And I think when someone dies whom you love , you also want to carry the best of them with you. You don't just remember them, you embody them . I mean, Miranda was someone who used to like leave bottles of water next to the homeless in the streets of Brooklyn. She figured when they wake up, they're always going to need water . And those are things you just start to do because it's a way of keeping them alive, not just in memory, but in action. So my last question is Strom from the book. You wrote about speaking with a mother who had lost a son also age thirty two who tells you she believes she has to appreciate her own gift of life and make use of it, and that is really the gift to exist . That seems to be the idea that you've taken with you. Is there another one or is that the main idea that you took away from? The main thing is that there's a lot of I say that we become the mothers now who have gone through it become intake officers at the alternative universe to the new mothers or parents who were coming through. And we had those people for us . They're the people you want to talk to and say, okay, what's ahead ? But so when I was connected with her, this mother, and she was telling me about her son. And she goes, I know people say I have to remember that my son Sean's life was a gift , but I also have to, and she's saying this through tears because it's very fresh . But I also have to remember that my life is a gift . And it is a gift to be alive and not to squander that gift and not let grief take that gift away from me. Right. And that's I think,, the ultimate thing in terms of in addition to just carrying the grief , you are struggling to get to that where you can say, even with this pain, even with this grief, I appreciate my life. I appreciate this gifts that I have, and I want to make the best of it before I die. Well, that's a beautiful way to end. Danielle, I can't thank you enough. Thank you for allowing me to talk about Miranda to your listeners. Today's show was produced by Tracy Hunt, Emma McNamara, Dave Shaw, Nasha Kurwa, is Vox Media's executive producer of podcast. Our engineers are Jim Mackle and El andia Al Jackson and our theme music is by Tracademics. 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