Transcript - Episode 9: Breaking Format, Part 2
Hey, It’s Me
EPISODE # 9
Hosts: Mike Sakasegawa and Rachel Zucker
Transcript by: Leigh Sugar
Transcripts formatted after those from Disability Visibility Project
Please note: transcripts are transcribed directly from recordings of live conversations; as a result, quotes and statements may be approximate and there may be unintended memory errors.
[Music]
RACHEL ZUCKER: So, I'm still hoping that we use some of those messages for the next episode, you know, the episode eight or whatever we're up to, but I just, I just needed to record right now. And I don't know if this is going to be an episode or not. I, I just, I just need to talk about what's going on, and we can talk about why I want to record.
I mean, I think in your, one of your messages to me, you laid out a lot of reasons, you know, about why I would want to record. And I appreciated that because I think I felt a little embarrassed that I want to record, and you made me feel less embarrassed about that. And I really appreciate it.
MIKE SAKASEGAWA: Happy to help.
RACHEL ZUCKER: Things are really bad, and things have gotten so bad, so quickly. And I think it's really hard for me as a writer to process any of this when I'm not writing, when I can't even take notes, you know, I'm not doing morning pages. I'm not, I asked my friend, Claudia, the last time we had a phone conversation, I was like, can you just, can you write some stuff down for me?
Like, and I had a funny experience a few weeks ago when Abram was still in the hospital and I came home and I was having a really hard time sleeping. And I went to turn on a podcast, and I was going to listen to Jack Kornfield. I really like Heart Wisdom, this podcast with Jack Kornfield but our, Hey, It's Me came on and I, I was like, did not have the energy to get up and go switch it. And I was like, what the fuck am I doing? I'm like lying in bed, trying to sleep, you know, my kid’s in the hospital. And I'm listening to myself talk? Like what, what, what weird thing is this that I'm doing, but I actually, I found it very soothing in a weird way, both because I, as I've said many times, I find your voice very soothing, and also, it was a record of a version of me that I'm not sure exists anymore, you know, where I was able to like talk about other things, and that might come back and it might not come back. I don't know yet, but I actually feel like I know it's not this way for everybody, but having a record of the experiences in my life that I'm having as I'm going through them is very important to me. And, yeah.
MIKE SAKASEGAWA: The thing that you just said about a version of yourself that you're not sure exists anymore. Experiences like the one that you're going through right now, they have a way of putting that into really sharp relief. But I think that it's, for me anyway, when I'm stuck in that, in that point of being so aware of my previous self being different from my current self, I find it really, it important to remind myself that, that there isn't some kind of me, you know, that there isn't, even in the moment, there isn't one me. And there isn't really a consistent personality or experience or ability that lasts from moment to moment, that things are always changing. Which for me is something that can be very scary, and very upsetting, because I think having some sense of consistency, or stability, is really important for me for my feeling safe.
[5:00]
But I think that when I'm confronted with the ways that I've changed in drastic and sudden ways, that being reminded that I am less of an object and more of a process can be comforting in, in those moments. I don't know if that's true for you.
RACHEL ZUCKER: I think that is true. I mean, I think the last few weeks in some ways have felt the, the easiest way for me to describe it is like having a newborn, but without the joy [laughs], you know, without, you know, without the excitement, you know, it's just that feeling of like, am I going to get to take a shower today? You know, what are the three, you know, what's the one thing, the two, two or three things that the most that I can actually imagine doing, you know, and that sense of urgency, you know, babies need to eat, like sometimes every two hours, three hours, and they don't wait, they're not patient, they're hungry, you know.
And so, you know, the situation that I'm in keeps getting worse, like, Abram is losing his mobility very rapidly, hopefully that will stop, he has chemo on Monday, but just keeping up with that, you know, keeping up with, you know, does he need a walker? Does he need, you know, something in the bathroom to help him get off and on the toilet? And where do I get that thing? And, you know, all of a sudden I know about like, medical supplies and where to get them. And, but you know, if one person is getting them, who's with Abram? And it's taken, I mean, I'm very grateful and lucky to have had this at my disposal in the past few weeks, but it's taken three adults to really make this work. You know, somebody is with Abram pretty much all the time. He's a fall risk, and he, he fell on Tuesday night and it was terrifying. So someone's with him pretty much all the time. And then somebody is doing errands or cooking or cleaning, and then somebody is recuperating so that they can go in that rotation again.
And, you know, I was just entering a period of my life where I felt like, my kids were older, and my youngest was away for four weeks, and my plan was to come to Maine and be here and work on my novel and be by myself and, you know, kind of have the most freedom that I've ever had in my life and the least amount of caretaking that I've ever had in my life. And, you know, that changed.
And I remember feeling when I had babies, I mean, I so wanted to have kids and I, I loved the baby stage. I was really good at the baby stage. I'm very, very good at newborns and infants and toddlers and young kids. Like, I loved like the physicality of it. And, you know, I'm good at it. But I wasn't so good at the feeling that I had like just completely gone into this other existence where I wasn't, like, a person anymore. I was like half of a person, or I was, I was so connected to this other person who was outside of my body. And it was hard to manage that connection. You know, and that, like, that identity for me also, you know, and this is what most of my book first, you know, eight books are about, like, that transition to motherhood and the experience, my experience of motherhood and the feeling of bodily and spiritual and emotional connection to another human being that I'm fully responsible for, for their well being. And I felt, I, you know, I, I, my oldest kid is 24. Did he just turn 25? No. Yeah, he's 25. He just turned 25.
[10:00]
And, you know, so I've been doing this a long time. And I thought I was done with this level of intensity. And it's not like having an infant in another way, right? Because Abram is much bigger than I am. I can't, I can't just put him in a sling, you know, and carry him around and do other things. I can't, and he's scared and he's in a lot of pain. And there's all these decisions to make. And some of the doctors are nice and some of the doctors are terrible. He's back in New York now, so we're staying at this hotel, which I hate. It's like barely handicapped accessible. We have a handicapped accessible room. I mean, I, you know, I never thought about this shit before, but like we walked a block and a half to get to his first appointments at MSK and, you know, he's 23, he's walking with a walker, he's clearly very sick, and people are just fucking bumping into him, you know? And, I hate New York right now, I just hate it, I don't want to be there. But they've made it really clear to us here that they can't treat this kind of cancer in Maine. It has to be New York or Boston or the Mayo Clinic.
And so we're, we're trying to move out of this hotel into either an, an apartment, like, you know, I'm managing this with my ex-husband. It's not easy. Nobody gets divorced lightly, or at least I didn't. You know, we have trouble communicating like most divorced people do, and we have different styles of coping and we have different styles of caretaking and our styles don't match very well.
And Abram is very, very sensitive to other people's emotional states. And as am I, so I have to be really thoughtful and careful about, you know, I mean, I don't know if I said this to you before, but like in this crazy way, I feel like I've trained for this moment. Like I'm, I'm actually very good at it. I mean, I don't want to be doing it. I don't want this to be happening. It's like a horrible nightmare. But you know, all the doula training and the mindfulness based stress reduction training and the Buddhism practice and the meditation and the silent retreat and the teaching.
And you know, I'm good at helping Abram stay calm in really, really stressful situations, and I'm good at talking to the nurses and the doctors, you know, and when he, when Abram was at the hospital in Maine, you know, I need to bring food every day to the nurses, you know, every day. And I knew not to just keep bringing them donuts. And I knew, you know, to take everybody's name and, you know, to, to speak to everybody by their first name and to, you know, say, you know, this is Abram, he suffers from anxiety. If you could do it this way, that would be really helpful. You know, when someone first came in the room, like all this shit, you know, that like most people, unless they work at a hospital or, you know, they're you know, have training like that, you know, and I, and I also know what it's like to support somebody who's in labor and to realize like, you can't take their pain away, but I know comfort measures and I know how helpful it is to just have a calm presence with you. So I am that calm presence with Abram and with Josh. But, you know -
MIKE SAKASEGAWA: Is there anybody that gets to be that kind of presence for you?
RACHEL ZUCKER: No. Nobody. Nobody. And I said this earlier today to somebody, and this is really a shitty thing to say, but I'm going to say it anyway. Like, I wish my mother was alive right now, not because she would be comforting to me or helpful. I just want her to suffer a little bit.
[15:00]
Like, I never got the kind of parenting that I'm giving my kids. I never got the kind of caretaking that I'm giving my kids. And this situation, on top of everything else, is just unbearable. But I'm bearing it, you know? I'm doing it. And I have no siblings. You know, my dad is not able to really be supportive. I have very little family. I have some really, really good friends, thank God. And I'm also, like, calling in every single favor. Like, I have never liked asking for help. I need so much help right now. And I'm just asking and asking and asking. I'm like, hey! Can you watch, watch the dog? I have to do this. You know, can you pick me up and drive me here?
Like I, I came home on the plane, the plane on Thursday and there was a huge storm and the plane wasn't taking off and I hadn't slept for days and you know, we just had the most horrible meeting with the oncologist and, you know, I realized as I was landing, like, I should not drive home. I might, I'd left my car at the airport and I was like, I can't afford to get into a car accident right now. Like, that's not, that's not okay for Abram. He really needs me right now. And so I took a taxi, and then I like, I called this guy, John, who I met on Tinder years ago. We never slept together, but we've been like friends, you know, kind of through Tinder. Like, he's not a close friend, he's like not, like, I, I can't pick and choose though. I'm just like, who's up? Who's up for this?
Sometimes I send like a group text, you know, to people in Maine and I'm like, I need someone to pick Judah up from the bus station, you know, or whatever. And like, just please, whoever is the first person to respond, you know, and these are like my neighbors. These are not, sometimes not even people I know very well. You know, this is just like where I am right now. I mean, this part hopefully is going to change, you know, and, and Josh and I will try to come up with a schedule and we're going to have to have other people involved. But I can't, I mean, I'm not doing anything other than this, you know, and how am I, am I really, I'm really going to go teach this fucking class to kids Abram's age?
I don't want to. I mean, part of me wants to, because I want to maintain my life, my professional life, my creative life, my, you know, non caretaking life, along with this, you know, with supporting Abram. But, teaching is hard. Undergrads are, especially in the past few years since COVID, they're very needy, they're very immature, many of them, not all of them. And it requires a lot of emotional work, at least the way I teach. And I just, I don't have, there are moments where I just, I just can't afford to care about anybody else. It's too hard. It's too painful. I don't care about the election. I don't care about global warming. I don't care about any of the things that I cared about a few weeks ago.
And, I mean, we'll see. We'll see. The dog clearly cares about something. She's barking. It's hard for me right now to imagine going into class, teaching, paying attention, you know, even remembering their names, you know, caring about their poems. I don't care about poems. I, it's just like I fell into this terrible hole of like chaos and fear and need, and also -
MIKE SAKASEGAWA: You said that it was hard for you to ask for help.
[20:01]
RACHEL ZUCKER: Yeah.
MIKE SAKASEGAWA: And then you said that you are asking for help.
RACHEL ZUCKER: Yeah.
MIKE SAKASEGAWA: Obviously, you have a lot of need, and it sounds like, you know, obviously I'm not there and I don't see, but it sounds like people are in what ways they can -
RACHEL ZUCKER: Yes.
MIKE SAKASEGAWA: Stepping up for you where they can.
RACHEL ZUCKER: Yep. They are. And I guess what I meant is like, I don't, I haven't up until, you know, it's interesting because Abram is my second kid and he's 18 months younger than Moses. And when Abram was born, I really needed to start asking for help. Like I couldn't do everything myself. And so it's just interesting, you know, it's a coincidence, I guess, but like meaningful to me that like, now I'm in this situation with Abram and like this, this issue of like learning to ask for help is something that Abram brought into my life that, you know, not Abram, but like having Abram, having two kids so close together, changed. Like I, until Abram was born, I was like, I'll do it myself. I'll just do it myself. And, you know, as my kids got older, I, like, I'm such a ultra competent person in, in most ways. So, like, I do most things myself, especially since I've been, you know, without a partner and like a single woman living, you know, by myself.
MIKE SAKASEGAWA: Can I just say, it doesn't sound like that's changed. You were even just describing just a minute ago how your expertise, your training, your experience does allow you to be quite competent in this scenario. It's not a good scenario but I feel like a lot of what I'm hearing you say, or at least part of what I'm hearing you talk about, is the degree to which being, a lot of this being outside of your control is very difficult and very scary, as it is for everyone. We all want to have control over our own lives. We all want to feel some sense of agency. But, I guess I can't help wondering if, like, being able to see the way that you are competent helps you feel a little bit more controlled in this situation?
RACHEL ZUCKER: I mean, I can't imagine what it's like for people who don't have the skills that I have, let alone the financial resources that I have. Like, we're able to stay at a hotel near the hospital right now. Like, I don't know, I don't know how people do this if they can't do that. You know, I mean, yeah, I don't, I think you're right. I feel so helpless, but I'm not helpless. I have, you know, so many skills and capacities, and I am asking for help, and people are responding with help. So I'm not helpless, you know, in many ways. I'm helpless over the larger, you know, the fact that he has cancer, the fact that like you know, I can't mix up some chemotherapy and give it to him.
MIKE SAKASEGAWA: But you do have the resources and the opportunity to bring him to the kind of specialists who can give him chemotherapy.
RACHEL ZUCKER: Yeah. I mean, because of our specific situation, the parts that, that really make me the most angry are when there are things that are hard because of bureaucracy or money, you know, the hard parts about this that are the worst right like the pain and the fear and mortality and illness and suffering and all of that, like, those are really hard, but also like, that's life, you know, but the way that hospitals work, the procedures and protocols of hospitals, and the medical system, and the health insurance, and healthcare and all that stuff and, you know, just the way, the way the mail works, the way that people don't work on the weekends, like his cancer doesn't stop on the weekends, you know? Those are the places that… those are the times that I’ve felt like really enraged.
[25:00]
So I think, you know, not all cancers are the same. This is a rare cancer and it was hard to diagnose. There's only a few hospitals that even treat this kind of cancer. So, you know, again, we're lucky because we live in New York. Like, what if somebody is from Maine and doesn't have access to New York? You have to go to Boston, you know? Yeah, I, I mean, it's just, I didn't understand. I didn't understand this world of, of, of urgent extreme illness. And just trying to navigate, you know, these systems.
MIKE SAKASEGAWA: Feeling anger, feeling rage about these things is, I think, pretty normal and reasonable. And I think that's what anybody in this situation would feel. Do you have a place to put that energy? Do you have a place to allow that energy to escape your body? And if you don't, could you?
RACHEL ZUCKER: I mean, the thing that makes me feel okay, physically, is going in the ocean. But I'm about to not be able to do that. That's like the best, the best feeling for me is going in the very cold ocean every day. And I slept with a stranger. That was something. I thought that would, it was distracting.
MIKE SAKASEGAWA: [Laughs]. Sometimes having a distraction is okay. I know that you have expressed many times a philosophy or belief that you don't want to distract yourself from things, that you think that distracting yourself is problematic in some way. But when things are actually out of your control, sometimes distracting yourself is the only thing you can do. And that's okay.
RACHEL ZUCKER: Yeah. I feel fine about that right now. And like, I'm, I'm also like Abram, it's time for a distraction, you know? And so just like when my kids were little, I learned how to take care of myself by taking care of them. And I was like, oh, children need to go outside. I go outside because the children need to go outside and actually going outside makes me feel better. And then I learned to go outside even after my children didn't want to go outside, you know, or like these are healthy foods that children need to eat. And when I eat healthy foods, I feel better.
So yes, distraction is, I am learning to love distraction and appreciate distraction, but like, I think the anger is really interesting. It, today was really the first day, I think it's because I'm in Maine and he's in New York, and so like, I'm not on call in the same way until tomorrow again. And that distance has enabled me to like, get in touch with the anger a little bit more. Like, I don't think I felt like I could even feel that up until now. I also, it's like, it's a weird thing, but I find myself reassuring so many other people, like it's such a shock to them.
MIKE SAKASEGAWA: Does that make you angry?
RACHEL ZUCKER: Yeah, sure does. I also understand, you know, like it, I really do, you know, like, people who care about me or care about Abram and they're just finding out this information, they're so shocked. And it's, you know, it's every parent's worst nightmare to have a sick kid, like a kid, like really, really sick. And some people handle it, you know, they very well. And some people get really upset. And then I find myself saying things like, I'm okay; yes, it's very hard, but I'm, we're managing. If I, if I need help, I will ask. I am asking for help. You know, I, I, you know, please calm down. I know this is a shock for you. It's not a shock for me anymore. This has been unfolding, you know, over the course of weeks. And then I'm like, the fuck, why am I taking care of this person?
[30:00]
Seriously? You know, and then I go back to, you know, my temperament or neurology, or I don't even know what the fuck word I'm talking about, but like, I, have like a little over empathy problem, you know, and, and so I'm constantly like, oh, this must be so hard for them. And I'm like, it's always harder to be outside the inner circle because you like, you, you know, when you're, when you're right there, when you're the one, when it's your kid, you're like, you have to deal with it. But like other people at, you know, I don't know, I go into that. I'm like, oh, it must be so hard for my blah, blah, blah, you know, who's seeing this, you know, or, you know, I have other friends who have cancer and It's bringing up a lot of stuff for them. It's triggering a lot of memories for them or, or fears that they have, or, you know, maybe they, I have a friend who had to have chemo and treatment during early COVID, so nobody could go with her to the hospital and she fell once and had to go in through the emergency room. And I think it was really terrifying, like really, really terrifying. And so a lot of stuff is coming up for her because Abram is getting, he, he needs this much support and he's getting this much support, and she didn't. And I think based on other people's history and feelings around mortality and illness and care and all that stuff, it's like -
MIKE SAKASEGAWA: Being aware of other people can be a burden sometimes it is also, and, and it is a lot to have to deal with someone else's, being asked to manage someone else's emotions when you yourself are at or nearing a breakdown. That is something that I've experienced as well, and it is very difficult.
I think also that the impulse to take care of those people's emotions, not everybody will do that. Not everybody does that. I do it, and I know you do it, and what I have been coming to wonder for both myself and for you is, what does that do for us? Because I think it must do something. And I think that there must be something as frustrating as it is to feel like you have to do that. Because at the end of the day, you don't have to do it, but you are doing it anyway. I'm doing it anyway also, and -
RACHEL ZUCKER: I have a thought about that, and this actually just came to me this morning. I was in, I'll tell you more details about it another time, but I would, I found myself in a very unusual situation in a group full of people, a group of women. There were seven of us and it was, we were each sharing, you know, really vulnerable stuff, and three women went before me, and while they were talking about really, really, really hard stuff that's happened to them or is happening to them, I, I just was like, I don't care. I don't fucking care. I can't, I can't, like I was saying before, like, I can't care about this. I can't care about you. And I was just stopping, but like, It was, it was like, it was this weird experience and then I realized, here's the problem with not caring. If I don't care about other people, I'm not connected to them. I'm completely alone. Like I, to me, that is my connection to other people. I don't know how to be connected without caring. Like, I know maybe there are other ways, I don't know them. And so, and then I talked and, and said what was going on with me and I just, I just sobbed and sobbed and sobbed and was like, I can't do this. I don't want to do this. You know, it's too much. But what ended up happening is that I started to care about the other people once I was able to talk and like really let it out. And once I was able to care again about these other people, I felt connected to them and I didn't feel completely alone. So, I think that's part of it for me.
[35:05]
MIKE SAKASEGAWA: That makes sense.
RACHEL ZUCKER: Alright, I have to go buy drugs now [laughs]. I really appreciate this. I don't know what we're going to do with this, but like, I just need this, and I, and I'm just, I'm trying to give myself permission to like, say, I think I need this. Can we do it? If we can, let's do it. And I'll worry about, I'll worry about it later. And if we can't, fine, next thing, you know? So, thank you.
MIKE SAKASEGAWA: You're welcome. And I will just tell you that, because I also have difficulty asking for help, which I think is a very common thing for people who were neglected as children, I think that you know, when I've been at really low points in my life, something that I've tried to remind myself is that giving people the opportunity to help me is in some way a gift to them and not a burden, and I hope that you will see that you are giving me a gift in this moment as well.
RACHEL ZUCKER: Thank you. It's really nice of you.
MIKE SAKASEGAWA: Go buy your drugs.
[Music]
MIKE SAKASEGAWA: You've been listening to Hey, It’s Me with Rachel Zucker and Mike Sakasegawa.
RACHEL ZUCKER: Hey, It’s Me is a production of Rachel Zucker and Likewise Media.
MIKE SAKASEGAWA: Editing on this episode is by Mike Sakasegawa, music is by Podington Bear, and transcription help is by Leigh Sugar.
RACHEL ZUCKER: You can find more information about the show, including contact information and transcripts, at heyitsmepodcast.com.
MIKE SAKASEGAWA: If you'd like to hear more from us, you can find Rachel's other show, Commonplace, at Commonplace.today.
RACHEL ZUCKER: And you can find Mike's other show, Keep the Channel Open, at keepthechannelopen.com. Thanks for spending this time with us. Take care.