Let grief be messy: NYTimes writer talks to Anderson Cooper about the life and death of her daughter

[0:00] Welcome to All There Is. Wherever you are in the world and in your grief, I'm glad you're here. [0:06] A couple years ago, I began noticing some articles written by a mom named Sarah Wildman [0:10] about her child, Orly, who'd been diagnosed initially with a rare form of liver cancer. [0:16] Sarah's articles were beautiful and moving, and I've been wanting to talk with her for a long time. [0:22] She's a staff writer and editor at the New York Times. Her daughter, Orly, was 10 when she found [0:27] out she had a hepatoblastoma, and what she and Sarah and her husband, Ian, and their other daughter, [0:33] Hannah, went through is extraordinary, and it's what so many parents face when their child gets sick. [0:39] Orly died in March 2023 when she was 14. I can't wait for you to meet Sarah and learn about her [0:46] remarkable daughter, Orly. That conversation begins in a moment. Can you tell us a little bit about [0:54] Orly? Yeah, I'd love to. I often say, you know, I really don't love to focus on her death because it [1:00] kind of erases all that she was, right? And I think that's some of the problem with bereavement [1:07] in some ways. It's so hard to see the person. She was diagnosed at age 10 with a really rare form of liver [1:13] cancer. She was on a basketball team, and she was dancing. She was an amazing dancer, but she was [1:19] starting to have all this pain, and no one understood it. We kept going back and forth to the doctor. [1:23] No one put anything together. And the fall of 2019, [1:26] she went to the ER and was diagnosed. Her liver was full of tumors. She was in so much pain, [1:32] and I started to cry. And she said, you can't cry. You'll scare me. And I sort of like sucked them [1:38] all back in, and I didn't cry around her again [1:42] for a long time. I didn't feel it was fair to her, and [1:46] because I was trying so hard not to sit in a place that was [1:52] as dark as that. But when I came back from the ER, I wrote in my journal, [1:56] how are the eggs still good? Shouldn't the milk be sour? [1:59] How is the food in my fridge still [2:01] hasn't at all expired? How could everything in my house [2:05] be exactly the same, but everything totally different? [2:08] Everything else is exactly the same, except [2:10] we could sort of see through the scrim of [2:13] the life we'd led into the life we were about to lead. [2:16] And you could still reach across it for a little while. [2:18] She had many rounds of chemo. She had metastases to her lungs [2:23] three times and very painful surgeries to remove those. [2:28] The pandemic set in in March 2020, and she was so isolated [2:32] because of this inability to fight off infection. She was so vulnerable. [2:37] In the summer of 2022, when she was 13, it metastasized to her brain. [2:41] Every time, she would be sort of remarkable in bouncing back. [2:46] After that first brain surgery, she was back on a surfboard [2:49] two weeks later. She read 15 books. [2:52] She loved Harry Potter. [2:53] Loved Harry Potter. She had a Talmudic intensity. [2:57] She was so joyful so much of the time. [3:00] I mean, there were very, very, very low moments [3:03] and so much fear. [3:05] We sat with so much fear so much of the time. [3:08] And my prayer, such as it was, was super simple. [3:11] I just want to keep her. [3:13] We were on a path to a cure for a really long time. [3:16] But then she had a second brain tumor, which is an obscene sentence. [3:21] And at that point, she started to write in her journals [3:26] that she was worrying about whether she would ever see ninth grade. [3:31] Orly wanted to have conversations about death, [3:33] about what she was facing. [3:36] How was that for you? [3:39] Harder for me than for her, I think. [3:41] Even though she really, really, really didn't want to die. [3:46] I struggled with this question more than Ian. [3:49] Her dad and my partner, he sat in it with her more than I did. [3:53] And I regret that. [3:55] And I think that she actually really wanted someone to say, [3:59] no, we have a miracle for you. [4:02] I mean, she actually even wrote that at one point. [4:04] How come no one's talking about a miracle? [4:06] She kept wanting to try every drug trial [4:08] and every last-ditch effort. [4:10] But she did say to me really early on, [4:13] we took a long weekend to Miami. [4:15] And she ran out to the waves, [4:17] and we stretched out on this lounger. [4:19] And it seemed really beautiful. [4:21] And then she turned to me and she said, [4:22] what if this is the best I ever feel again? [4:24] So it was really present for her. [4:27] And it was very hard to know where to sit as caregiver. [4:31] I sort of wanted someone to give me a guide [4:33] as to how to even have this conversation [4:35] without it all falling apart. [4:37] I really wanted to hold on to hope probably longer than she did in some way. [4:45] But when they realized it was her brain, [4:48] the first thing she said was, so I'm going to die. [4:52] And I didn't speak. [4:56] I couldn't speak in that moment. [4:58] And the doctor said, you're so mature. [5:00] And I was shaking. [5:02] I wasn't crying. [5:03] I was shaking. [5:04] And later she said she was angry with me. [5:06] She wanted me to contradict them. [5:07] And I couldn't. [5:08] Then that summer, what I ended up doing, because she bounced back, [5:12] I started to live in what I called the hyper-present. [5:14] I could no longer think beyond the minute I was in. [5:16] This minute is a good minute, and this is what we're going to do. [5:19] She's on a bike, and we're at the beach, [5:21] and I'm going to absorb every single second of this moment. [5:24] I could only be in that exact second. [5:26] We are not dying right this second. [5:28] What does this minute feel like? [5:29] I don't want to lose this moment. [5:31] I don't want to sully this moment. [5:32] I don't want to besmirch this moment by anticipatory grief. [5:38] After she had a second brain tumor, we started losing her in pieces. [5:42] She started losing words here and there, [5:44] and there were just so many indignities, [5:48] and there were ways in which I worried. [5:54] I didn't want to worry about losing her, [5:57] but I was worried about losing her all the time. [5:59] I was in this sort of traumatic intermediary space. [6:01] I didn't know how to sit there. [6:03] I didn't know what to do. [6:04] I didn't know how to absorb it. [6:06] Doctors would say, what do you want? [6:07] And I would say, I want her to fall in love. [6:10] I want her to graduate. [6:11] I want her to make mistakes. [6:14] What do you mean, what do I want? [6:16] What does that even mean? [6:18] I want the years that were promised her. [6:20] I didn't realize I was asking for too much. [6:22] I don't want to worry that these are the only 10 good minutes, [6:24] and what if I take a walk and I miss them? [6:28] I want her to go out with her friends and come back too late [6:31] and us argue about a curfew. [6:32] I don't know. [6:34] What do you want from a 14-year-old? [6:36] I just want her to get to do things. [6:41] So what do you mean by what do I want? [6:44] How do you want me to live right now? [6:46] How am I supposed to do this? [6:48] I didn't know. [6:49] And our world got smaller and smaller and smaller and smaller [6:52] until we were spending almost all of our time in her room. [6:56] And after New Year's, as 2022 became 2023, [7:00] a tumor compressed her spine, [7:02] and it took away her ability to walk. [7:03] And she just couldn't believe [7:05] that her world had narrowed so dramatically. [7:09] And Orly got upset with me [7:10] for not making plans for her to have a summer camp. [7:13] Why aren't you booking me summer camp? [7:16] Did a doctor ever tell her that she was going to die? [7:21] Or tell you? [7:24] It was not quite said in that way. [7:29] I mean, yes and no. [7:31] When they recommended her for hospice, [7:33] they said hospice is a backdoor to home nursing [7:36] because kids can receive concurrent care. [7:39] An adult who goes into hospice, [7:40] it's really comfort care and mostly end of life. [7:42] But for children, it's a sort of two-track. [7:44] And they said we wouldn't have to give up [7:46] doing drug trials and everything else. [7:49] And then when the hospice nurse called, [7:51] I said, well, we're starting a new drug trial. [7:53] And the nurse just blithely said, [7:55] well, you know, they told me she has six months to live, right? [7:57] And I said, no, you're the first one to say that to me. [8:02] And I was driving and I had to pull over [8:04] and I sort of fell apart that night. [8:07] I thought, I don't want to have a kid in hospice. [8:10] I don't want that. [8:12] Sometime later, an oncologist approached me and said, [8:14] I heard you didn't finish the intake. [8:15] And I said, is it true? [8:19] Does she have six months? [8:19] And she said, well, that's an antiquated way [8:21] of thinking about hospice. [8:23] And what I think she meant was no one can predict death. [8:27] How long did she live after that? [8:29] About six months. [8:31] Yeah, six months. [8:33] I just remember one of the nurses came through [8:35] and she said, what happy memories you have on your walls. [8:38] And I was so angry. [8:43] I felt like, is that it? [8:45] The memories are done. [8:47] Is at the end of living, [8:50] are we no longer creating memories? [8:52] One doctor, when I was obsessing, [8:55] I said, I just wanted to take her to Paris. [8:57] I don't know why you get these sort of things in your head. [8:59] And he said, you're not going to get to make the memories you want to make. [9:02] And it was actually one of the clearest sentences anyone had said to me. [9:06] Did you want people to bring it up? [9:08] Would it have been easier? [9:09] I needed somebody who really knew us to sit down with us and say, [9:13] we're at a really dire moment. [9:16] What are the conversations you want to have? [9:18] What are the things you want to discuss? [9:19] Do you want her to write letters? [9:21] Kids can do that too, the same way you can with an adult. [9:24] You guys did an Instagram Live. [9:26] Mm-hmm. [9:26] So the Instagram Live was when she was in a second season of chemo [9:29] after a lung resection. [9:30] And she was really just brilliant in terms of explaining to you [9:36] what it felt like to be a 12-year-old. [9:38] Let's just play part of it. [9:40] Do you feel like that regular life is just sort of continuing on [9:44] and you're still in this cancer space? [9:47] Yes. [9:48] I think it's also because it was really, really big deal. [9:52] Like when I got diagnosed for a whole month, [9:55] everybody talked about it, everybody tried to help. [9:58] And then after that, a lot of people ditched me. [10:01] I mean, I just think that it was, it, [10:09] cancer helps me also see how real, but just so many people [10:16] went out without me and just forgot [10:19] that I was going through all this stuff. [10:22] I think that, yeah, it goes on without me. [10:25] And sometimes I feel alone. [10:28] I love hearing her. [10:29] Yeah. [10:30] She's just incredibly impressive. [10:32] You said in the Instagram Live, so I feel okay commenting on it. [10:35] She looked amazing, bald. [10:36] She was an incredibly beautiful, bald. [10:39] Yeah, she was amazingly beautiful, bald. [10:40] And poised and articulate and funny and a bit wry. [10:44] I used to show that video to doctors when she was doing poorly [10:47] or not speaking in the hospital so they could really see who she was. [10:51] I think the other piece about that video, which I love and I wish I had, [10:53] is that as a result of this weird, hothouse, horrifying, terror, roller coaster ride we were on, [11:02] I knew what our adult relationship would be. [11:05] We went out one night in Manhattan and we ran around and we went to see a play [11:09] and then we careened out of there and went to late night ramen [11:12] and she was like, oh, you're actually kind of fun. [11:15] Thanks. [11:16] High praise. [11:17] Exactly. [11:18] I have a tape of her just that I made that summer slightly surreptitiously, [11:23] although she later got mad at me. [11:26] She knew I was doing some of these. [11:27] But I came in and I filmed her and I said, don't you love me? [11:30] And she said, I love you. [11:31] And I really, really wanted to have her saying it, like on tape. [11:36] But I love hearing her like this. [11:38] I want to ask you about a couple of things you've written. [11:40] You said, what if we were presented with something other than relentless hope? [11:44] If we had been asked to really consider that Orly's time on earth was limited, [11:47] how would we have used that time? [11:50] How do you think you would have done things differently? [11:53] Or do you? [11:55] I wish we'd recorded more. [11:57] I wish that last summer when she was really good, [12:00] I used to lie in bed with her and we would just talk for like hours, [12:04] way, way, way too late. [12:06] And I wish I'd just hit record, you know? [12:09] I think I didn't because I thought to do so would indicate [12:14] that I thought we weren't going to get more of those. [12:17] I would have had her maybe write letters to us. [12:26] I wish we'd really sat in this idea of what would she like her legacy to be? [12:34] I wish we'd asked her the questions that I would want to ask anybody who is facing death. [12:39] And I think, you know, maybe I wouldn't have had the equilibrium to do it. [12:44] To some degree, also, you're in such crisis mode. [12:48] I just wish we had established ways to listen back to her voice even more. [12:53] Our electronic lives are very, very, very easily erased. [12:57] And in fact, most of her text messages disappeared one day [13:00] because they weren't, something happened between, if you weren't texting to her. [13:04] And I still text back and forth with that phone, totally, ridiculously, I still have it on. [13:10] You still text her? [13:12] I send myself stuff from her phone still. [13:15] And every now and then, I'll send her a message. [13:19] My really beloved, incredibly gregarious, unbelievable brother-in-law died out of the blue on December 19th. [13:24] What was his name? [13:26] Michael Repetti. [13:27] We called him Mikey. [13:27] On Orly's birthday, which was January 13th, we let go of this biodegradable kind of dove balloon that you can write all over. [13:35] And Hannah wrote on it, I hope you're with Mikey. [13:39] And I hope you're together. [13:40] And I loved it because the one thought that gave us some solace was the idea that maybe they were together. [13:46] And oddly, Hannah didn't know this. [13:48] I had texted that to Orly's phone. [13:50] I said, are you with Mike? [13:51] Are you both okay? [13:53] But I find some solace in that idea, you know, whatever that means. [14:00] But I wish I had sat with her in it more, you know. [14:04] I would like to think that she didn't feel alone in it. [14:07] I mean, I was with her as she died, you know. [14:10] You were able to be with her. [14:12] We were totally alone. [14:13] The hospice didn't come. [14:15] It was really, really, really intense. [14:17] It was Ian, me, and our old caregiver who had come back to help us out. [14:23] She hadn't been doing well, but we didn't know. [14:26] We knew enough that in the morning, when Hannah said goodbye and asked if she should stay home from school, and we said no. [14:33] The night before, Orly had said, I love you to her, when that was enormous. [14:39] But then things took a very bad turn after Hannah left for school. [14:42] But Hannah sensed, we all sensed, something had shifted and we didn't know. [14:45] And my heart, like, beats faster telling you the story. [14:49] But things started all disintegrating. [14:52] And for a long time, I couldn't unsee some of the things I saw in those minutes or that hour. [14:57] You know, our old babysitter who was with us, she kept saying, tell her you love her, tell her you love her, tell her you love her. [15:02] And I just kept saying it over and over and over, and I didn't get up for hours. [15:07] The hospice nurse didn't come for several hours, and I stayed there in the bed with her. [15:11] Which, if you had told me at some point that I could be somebody that could do that, I wouldn't have thought so. [15:16] But I also knew there's the things you might want to memorize, right? [15:20] We had the same freckle on our knee. [15:24] Like, we used to hold hands a lot. [15:25] When she was really small, I think I took as much comfort from holding her in bed as she took from me, you know? [15:34] Just something so essential to it. [15:38] There's something so profoundly off-kilter about having nurtured someone from birth and seeing them leave. [15:52] And I know I'm not the first person to have done it, but it felt so out of order. [15:57] I couldn't stand the idea of letting people take her out. [16:00] It was not cinematic. It was not pretty. [16:05] She was in pain. [16:07] I can hear, even though she didn't really speak in that last hour, but I just can hear Ian cry, my baby, in a hallway. [16:16] And all of it is something I can't unexperience. [16:21] It was so disembodied and so beyond myself in some way. [16:25] And yet, I didn't want to leave because then I'd never have another chance to hold her. [16:32] And what does that mean? And how do you go back out into the world? [16:39] I kept feeling her absence everywhere afterwards. [16:42] I didn't know how to be in the world. [16:46] I didn't know what to do with myself. [16:47] You know, I didn't know, I felt like in free fall, you know? [16:52] What does it mean now? [16:54] What does anything mean? [16:55] How do I put one foot in front of the other? [16:58] How do I relate to anybody? [17:00] How do I go out looking like a person? [17:06] How do I not appear to every single person that I'm completely shattered? [17:10] I kept feeling like every single step without her was a step away from losing that visceral experience of living with her. [17:17] And what does it mean to sort of hold that memory? [17:19] I know you've talked about this a fair amount, this fear of losing both the profound and the daily. [17:27] My kids are four and five. [17:29] And I've been recording all those moments of, like, just laying on the bed together. [17:38] All those moments that you talked about that one normally wouldn't. [17:41] And I've been doing that the last six months a lot. [17:43] It's so crazy to me how over time one forgets all these, all the moments that make up one's life with somebody else. [17:51] It's terrifying. [17:51] They call me Emo, mommy in Hebrew. [17:56] And I think, do I have a recorder of her saying it? [18:01] I just want to hear her call my name. [18:03] We'll be right back with more of my conversation with Sarah Wildman. [18:10] Welcome back to my conversation with Sarah Wildman. [18:13] Has grief been different than you thought it would be? [18:15] I feel like I walk around with this sign that no one can see, that I'm not complete. [18:21] I stay up too late. [18:24] I'm afraid of sleeping. [18:26] I'm afraid of not sleeping. [18:28] I fill in a lot with work. [18:31] I'm alone a lot. [18:31] They call me high-functioning. [18:35] I don't know what that means. [18:39] I broke up with a therapist who said, I'm worried you're angry. [18:43] And I said, have you Googled grief? [18:45] Because I think it's the second one on the list. [18:48] I was like, yeah, I'm angry. [18:49] And I don't think I'm involved. [18:50] I'll show you how angry. [18:51] I'm really angry. [18:52] Like, you're here. [18:53] You know, it's a mix of things because it's also navigating everyone else's grief and my [18:59] own and not knowing where I sit with it. [19:02] It's sometimes being like just walloped by missing her and wanting people to sit with it [19:10] with me in some ways. [19:11] And I'm not good at asking for it. [19:12] You're good at writing about it. [19:14] It's the one space I feel like I'm able to shed all the inhibition I have about talking [19:20] about it. [19:21] Every time I pull out a receipt from an old bag or pocket, I look at the date every single [19:29] time. [19:30] And I think, was Orly with me? [19:32] Did I sufficiently appreciate that day that she still walked this earth with me or was [19:38] on the earth with me? [19:39] Did I pay attention to it? [19:42] Was I celebratory enough of it? [19:45] And every time I see a date, I think, where were we? [19:50] What was happening for her? [19:52] Was she sick yet? [19:54] Was she gone? [19:56] It has totally redefined everything about how I see the world and how I fear other loss also. [20:04] It's like that Mary Oliver poem. [20:05] At the end of the poem, she says, joy is not a crumb. [20:07] The way in which we don't get to choose how much time we get happiness and how much we don't. [20:14] And we have to sort of run into it. [20:17] Sometimes I'm very open about it and sometimes I'm not. [20:22] Sometimes I feel like I should have a sign around my neck, caution when approaching, something [20:28] like that. [20:29] My entire life, I wanted to have a scar on my face. [20:32] Harry Potter. [20:33] Well, I always thought of like a Bond villain, but like running down across my eye, like down [20:38] like this, so that someone would know without me having to say anything that I was living [20:44] half a life. [20:45] But that's it exactly, right? [20:47] It's a half a life. [20:48] I feel like that's a thing. [20:48] I'm half a person. [20:50] Yeah. [20:50] That's what I feel like. [20:51] I feel like I'm, oh, that's when I was, that's when I was whole. [20:57] Oh, I remember that. [20:58] For me, it's like every time I meet someone, then it's a, it's a coming out. [21:02] I noticed I was doing a quick apology thing. [21:05] I would be like, I had a brother, but he, he died. [21:09] And then sparing them the next embarrassment of them saying, how did he die? [21:13] And then I would say by suicide and then making them really awkward. [21:15] I would try to do it all in one swoop. [21:16] I didn't want them to feel awkward about it. [21:18] And now I'm sort of like, okay with the awkwardness of it, I guess. [21:22] I think that's the thing that you do have this moment of like, you know, I have a dead kid. [21:28] I had this moment when somebody asked me recently, how's the family? [21:31] And, you know, you want to say something like, Han is really into volleyball or at least dad, you know, do you think for you that the way your emotion is, is high to the surface is because for so long it. [21:47] Oh, absolutely. [21:48] Yeah. [21:49] I mean, I've buried it my entire life. [21:51] I've never cried. [21:52] You didn't cry when Carter died? [21:54] I maybe cried. [21:57] I found out I was in Washington when my mom reached me on the phone and called me. [22:01] And maybe I, I don't think I cried that night. [22:07] I cried some, like in a pillow by myself and maybe while giving, I gave a eulogy and maybe cried during that. [22:14] But I buried that pretty quickly. [22:17] And, and certainly with my dad, I buried that very, very quickly. [22:21] And I realize now, largely through talking with Francis Weller, that I developed this voice in my head that was designed to like protect the little kid that I was. [22:32] And it's still the voice I have in my head and it's a very unreliable narrator, it turns out. [22:36] And it tells me to be wary of everybody. [22:38] And I follow that voice to, it seems, high achievement, high functioning, as you said. [22:43] But as you said, alone a lot and very isolated and find it very hard to maintain any connection other than work. [22:53] Now with my kids, it's different. [22:55] But prior to having kids, yeah. [22:58] You know, I was invited to a night out the other night and the more people that got invited onto this text chain, at one point I was like, oh, no, I'm out. [23:07] Yeah. [23:07] There's no way. [23:08] I'm not doing this. [23:09] I can do like one or two people maybe and something like, but by and large, I bail out on everything. [23:15] I did go to a party around Halloween and I wore this dress and, but I, everything else about my outfit was sort of 1940s. [23:24] And this woman said to me, oh, I really like your dress. [23:26] And I said, oh, it's my bat mitzvah funeral dress. [23:29] I wore it to Orly's bat mitzvah and then her funeral. [23:31] And she just kind of backed away. [23:35] She just was like, she didn't know what to do. [23:37] And I was like, oh, I guess that was, that was maybe too much. [23:41] And I realized, oh, you know, that space of humor. [23:46] The interesting thing is I sometimes think Hannah is the best at it. [23:50] In fact, you should do a kids episode with different kids on it. [23:52] I would love that. [23:53] Yeah. [23:53] She's really, she had this moment the other day at school. [23:56] She told me that something happened and she turned to someone. [23:59] She said, death doesn't have to be awkward. [24:00] You're making it awkward. [24:02] And I was, I said, how come you at 12 are better at this than I can do? [24:07] She said that to somebody at school. [24:09] Yeah. [24:09] Wow. [24:10] You said death when it comes feels like a failure. [24:13] Can you talk about that? [24:15] Somehow collectively as a society in the West, we've come to decide that there's some kind of perfect death. [24:22] It's around the age of 100, you know, and you're surrounded by all your loved ones and you've done all the things you want to do. [24:28] And you say goodbye to everyone and you pass peacefully. [24:31] And I suppose that happens sometimes and it's amazing. [24:35] But a lot of the time it's out of time. [24:38] But we aren't actually able as a medical establishment to necessarily intercede every time. [24:47] And yet I do think especially with something like childhood cancer, there is a sense of failure with it. [24:56] That's the sense I got. [24:58] And I think it's part of the reason why it's hard to talk about. [25:01] I mean, look, some of it is also the American ethos. [25:03] You know, from the very beginning, people would sort of act like, she's going to have such a great college essay. [25:10] She's going to triumph over this. [25:12] And she's going to have done this amazing thing. [25:15] Or like at each stage, you know, after she had a liver transplant, well, now you're done and you've done this thing and you've got what strong family you are. [25:22] And so as a result of that being the narrative, it's very hard to show anyone the brokenness, even in the middle of it. [25:30] The fear, the terror, fighting, you know, because there's so much tension. [25:35] But yeah, I think that for childhood cancer in particular, childhood illness in particular, the idea that we can't save every single child feels like how can that be? [25:46] The underfunding of childhood cancer is one of the great crimes. [25:50] I mean, it's unbelievable. [25:52] It's unbelievable. [25:53] For a society that claims to care about children, it's shocking. [25:56] It's really shocking. [25:57] I mean, the more we understood how little research had been done into childhood cancer as we looked at it, how many of the treatments were created for adults or decades. [26:10] Yeah, they're decades old. [26:11] Decades old. [26:12] Yeah. [26:13] So there's this strange dichotomy between we don't fund it and yet we somehow believe we should all be able to overcome it. [26:22] You wrote, [26:22] The weary griever is used to the expression, I can't imagine. [26:26] It is an expression of distance and of pity. [26:28] It is a declaration of separation, an implication of difference and a means of personal reassurance. [26:34] I can't imagine your pain is a personal promise. [26:37] I won't do it. [26:38] I can't face it. [26:39] I'll never have to. [26:40] Thank God it's you, not me. [26:42] Phew. [26:42] And yet some of the best art is art that does precisely this sort of imagining, refusing to look away from the very human condition of grief. [26:50] Yeah. [26:51] Every time I hear it, and Hannah will say it now too, you can't imagine. [26:56] You've imagined it from the first moment your child slipped on the handlebars and fell to the ground and you ran over to make sure he's okay. [27:04] You imagined it from the first moment you felt a fever and it terrified you and then you reassured yourself. [27:11] And you imagined it from the first moment you realized that your parent could die. [27:14] I think for many children it's around the age of like four or so, right? [27:18] The first moment that you realize that none of us will survive forever. [27:25] We've always imagined it. [27:27] So when people say I can't imagine, and they do all the time, they really are distancing themselves and protecting themselves. [27:33] I know that sounds maybe more bitter than I mean to sound, although sometimes I'm bitter. [27:37] The expression I can only imagine is a little bit better than I can't. [27:42] Do you feel her? [27:45] Yeah, I do. [27:47] Sometimes more than others. [27:49] Sometimes I'm desperate to and I don't. [27:51] I've had some amazing moments of really feeling her. [27:54] A couple months back, I did this loop around my neighborhood and I was like, Harley, where are you? [28:01] And three quarters of the way through, these two older women were speaking very excitedly in Spanish next to a tree. [28:08] And I don't know why, I stopped them and I said, what are you looking at? [28:12] And they said, this bird. [28:13] It was in Spanish. [28:14] And I saw a pigeon or something and I said, okay, this bird? [28:18] And they said, no, no, no, not that bird. [28:20] This one. [28:22] And it was this resplendent woodpecker on the tree in front of us. [28:28] And they said, we're so glad you stopped. [28:31] And I said, I'm so glad I stopped. [28:34] And we all like grinned in this huge way and we were so happy. [28:38] And I walked away and I thought, what just happened? [28:42] Why did they even talk to me? [28:44] Why did they show me this? [28:45] And then I was like, oh, and maybe this is insane, but I was like, oh, really? [28:50] I think that was you. [28:55] I mean, that's what I felt. [28:57] And maybe you can tell me like, no. [29:00] But I don't know if it matters what you think, you know? [29:02] I mean, it does, because you're Andrews and Gooper. [29:04] But in that moment, I thought, oh, I feel you here. [29:09] I feel you in that weird moment of a woodpecker on a city street and these random women turning [29:14] to me and speaking to me in Spanish. [29:16] Why? [29:17] You know, why would they even necessarily think I spoke back? [29:20] Why did they want to share it? [29:22] And it was so hurt to see joy in this total mundane moment and yet totally extraordinary. [29:29] And I thought, because I had this half a second where I feel joy, and I don't know that I [29:38] can like hold joy all the time now, but I got to feel it for like a moment. [29:45] And in that, I felt her. [29:46] It's beautiful to feel her as joy. [29:48] Yeah. [29:49] I think what's hard for me is when I want to and I can't. [29:54] And so I don't always know that I can conjure it. [29:57] Yeah. [29:58] And then sometimes I really can, and it can be painful, even as it's amazing. [30:04] Yeah, I never want to not feel her, I guess, is the thing. [30:08] I feel like the essence of her, the energy of her, the orderliness, and sometimes it's [30:15] just sort of keeping her present. [30:17] You know, it's like weird. [30:18] I actually smelled it the other day out of place. [30:20] There's a diffuser still in her room that still has the smell in it. [30:23] You kept her room? [30:25] Yeah, Ian works in it now. [30:27] I changed the bedding because she died there. [30:30] I made it really beautiful. [30:32] She was really, really aesthetic and really, really, really neat. [30:36] She had a notebook, Anderson, from when she was 11 and facing the transplant, that she [30:42] tabbed, things I'm scared of, things that might make it better, questions I have, that [30:49] she'd written on tabs. [30:51] I mean, she was really organized. [30:53] So the room, she had all these feminist posters up. [30:55] She was very political, very curious. [30:59] She also loved Marvel, which she got into secondary to Harry Potter. [31:03] And yes, I've kept it. [31:04] And I did it in her, what I thought would be her aesthetic. [31:09] You wrote that a friend of Orly's had given you a tremendous gift, the knowledge that Orly [31:14] had tried to prepare herself. [31:16] Four months before she died, she texted her friends to say she knew she would not survive. [31:21] She thought she had two years left. [31:22] She texted them, but doesn't everyone? [31:25] I just will die a little sooner than most. [31:27] This is a great opportunity for me, actually. [31:29] Everyone's focused on the time they have left. [31:32] They forgot to live. [31:33] Did you know that she had written that? [31:36] I didn't know until after she died. [31:38] I wrote the friend, and I said, I've lost most of her text messages. [31:42] Are there any messages you think I should see? [31:45] And this kid sent it to me, and it really blew me away, actually. [31:50] I knew that she had started to say she thought she had two years. [31:53] I knew that she was thinking about death. [31:57] I knew that she didn't want to die. [31:59] But no, I didn't know this. [32:00] And I don't know if she told other friends anything similar. [32:06] I think one of the hard parts about losing a child is you don't have the dimensional community [32:11] you do as an adult. [32:13] I sort of find myself craving memories, you know, wanting people to send me their memories [32:18] to provide more anecdotes, more stories. [32:25] This is the thing about untimely death. [32:27] Time sort of stops at that point. [32:29] And everything you imagine for the future is altered. [32:34] Because that person then doesn't get to be with you at every marker. [32:37] And the photos are forever wrong. [32:42] The dining room table is always wrong. [32:44] The number of tickets you buy is always wrong. [32:46] Because it's three in your case and not four. [32:48] Yeah. [32:50] Yeah. [32:50] Every time I set the table. [32:53] Like the house sounds different. [32:56] I just remember there was one point early on seeing Hana, instead of playing catch, throwing [33:00] a ball endlessly against a wall. [33:02] Now it might need nothing. [33:03] Maybe she would have thrown the ball against the wall anyway. [33:05] Literally the partner was gone with him to catch the ball with. [33:09] But I find it hard to fill the space. [33:12] I can't make any more photographs of Orly. [33:14] I can't make any more memories of her. [33:16] And I am always aware that she's not here. [33:20] And so I try to bring her in other ways. [33:25] And maybe, and some of it's in, a lot of it is in the writing. [33:28] I always say that it shouldn't matter that she was remarkable, but she was remarkable. [33:34] One of the great tragedies is her not getting to show more people that. [33:39] And getting that chance. [33:41] And my grief is so entwined with that as well in some way, in addition to feeling like there's [33:48] nothing I can do to fill this hole, even if I wanted to. [33:56] And so how do I live like this? [33:59] How do I move through the world? [34:01] You know, I give people, I have some for you, these little beads. [34:04] We took white beads emblazoned with gold, O's on them, and we'd put them places we wanted [34:10] her to be, wanted her to see, and took a photo there or just left it for someone to [34:15] find and wonder what it might be. [34:19] And I started giving them to people who were going places like Zanzibar, for example. [34:24] Maybe it's like a restaurant that you think she'd love or she really wanted to act. [34:29] Maybe you're in a theater, but you wish she was there too and leave a bead. [34:33] That's lovely. [34:33] In some way, it's like this little semi-permanent breadcrumb. [34:37] I also like the idea of having someone have to think in that moment about her in a space [34:42] she should be. [34:43] Is there something you've learned in your grief that would be helpful for others? [34:48] A woman wrote me who was not American-born, but she said Americans have this politeness [34:51] and a decorousness. [34:54] She was like, let it be physical. [34:56] And one of the things I think about a lot is let it be messy. [34:59] To not make other people comfortable, that's not your job. [35:03] If they're uncomfortable, it's like there's a tree on the way to Honda School, which has grown [35:07] through a power line. [35:08] And I almost think of that as like grief, right? [35:11] It has that potential of danger to it, almost sometimes catastrophically. [35:17] And at the same time, it also continues to grow. [35:20] There were these trees we saw just above Barcelona. [35:23] We were hiking in these Mediterranean pines that grow into the rock, like completely improbably. [35:29] How do they survive? [35:30] It looks like the wind should totally take them down, but they're somehow dug in. [35:35] And they're really, some of them are really twisted, but they're also extremely beautiful. [35:41] I think that it's a constant evolution, but I'm not fine. [35:50] I'm not fine. [35:51] And I don't know if I want to be fine. [35:55] I think the thing about grief is I don't want to release it. [36:00] I think it is a way of retaining her. [36:03] I don't know that I could, but I also don't want to. [36:06] Somebody had said this to me early on, and I didn't believe it, but it's true that sometimes [36:10] like the wailing and incredible amounts of tears at the beginning, you miss at some point. [36:16] Well, maybe that wasn't the case for you, and that's why you're there now. [36:19] But I guess my advice is to let it be all the things and not have any expectation of self [36:26] and not to be angry with yourself and not to feel let down by yourself, but not to be what it is. [36:37] One of the things I've written about a lot is that Orly had this ability to sort of see beauty [36:43] and run toward it. [36:45] And right after that first brain tumor, when she got on a surfboard, she biked off alone, [36:48] and she was out on a jetty. [36:50] And I found her, and we were worried about her. [36:52] And she said, this is so good for me, this moment, this beauty. [36:57] This is so good for me. [36:58] And I kept thinking, how is she able to see that even after going through this brain tumor [37:04] and brain surgery and knowing that probably the road ahead is getting worse? [37:11] Whatever she saw there, I guess that's what I try to look for in grief, too. [37:16] What does it mean to hold beauty and pain at the same time? [37:18] Because they're both there always and somehow not telling myself I can't see beauty, [37:25] that I don't deserve it, and not letting myself deny the pain because it's always there. [37:32] Thank you. [37:33] Thank you. [37:36] All of Sarah's articles about Orly are available to read on the New York Times' website. [37:40] A couple things to tell you about next week. [37:41] On Tuesday, April 21st, I'll be sharing a new podcast episode. [37:45] It's a conversation with Rachel Goldberg-Polin and her husband John. [37:49] Their son Hirsch had his hand blown off and was kidnapped from the Nova Music Festival in Israel [37:53] by Hamas on October 7th, 2023. [37:56] He was later executed in a tunnel in Gaza. [37:59] Then on Thursday, April 23rd, I hope you join me at 9.15 p.m. for my live streaming show, [38:05] All There Is Live. [38:05] You can only watch it on our grief community page at CNN.com slash allthereis. [38:10] It streams live there for free. [38:12] You can also communicate with others in the comments section who are watching at the same time. [38:17] Again, CNN.com slash allthereis on Thursday night, April 23rd at 9.15 p.m. [38:21] And if you missed the live stream, it'll be posted the following day for a week on the site. [38:26] All the older episodes of that live show, they're all available on demand for CNN subscribers. [38:32] And if there's something you've learned in your grief that you think would be helpful for others, [38:35] we'd love to hear from you. [38:36] You can leave us a voicemail at 404-827-1805. [38:40] Thanks for listening. [38:41] Wherever you are in the world and in your grief, you're not alone.