Transcript - Episode 15: It’s Okay
Hey, It’s Me
EPISODE # 15
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.
RACHEL ZUCKER: Hey, it's me. I only have a few minutes, Abram is on his way home from chemo, and I want to make sure that I'm ready for him. I hope you're doing okay with the holidays and your grandma's passing. And I… feel a little awkward saying this, but if you are still available, I don't even know if you're going to be back home tomorrow to record, it doesn't have to be tomorrow, whenever, I would really like to record an update for Hey, It's Me. But also, just now, I realized I'd like to run the update on Commonplace.
You know, I have not been doing well these past few weeks. It's been really hard for me. And so I have, I've come to like this tough place with Commonplace, and I need to put it on hiatus for at least three months, and I keep trying to just like write that into the intro of what will be the last episode before the hiatus, which is the Sabrina Orah Mark episode. And I just keep not being able to do it and not being able to do it and not being able to do it. And I think there's lots of reasons for that, which I can tell you about maybe during the update, but, including that, I don't want this episode, that's really Sabrina's episode, to be really kind of like hijacked by, you know, whatever, my personal news.
And I was like, I also, I just don't know how to say it. I don't know how to talk about it. And then I realized like, oh, I would like to do that not by myself, but with you, if you're willing to, you know, just help me talk through what's going on with Commonplace and, and why, and, yeah. Anyway, I see you left me a message. I'm gonna go listen to that now.
[Music]
RACHEL ZUCKER: Well, today is kind of amazing, because it is 3 p.m. Eastern Standard Time, and I have been awake since about 5:30 a.m., and I haven't cried once.
MIKE SAKASEGAWA: Wow.
RACHEL ZUCKER: That is really the breaking of a record.
MIKE SAKASEGAWA: When was the last time that happened?
RACHEL ZUCKER: I just don't even know. So, I'm doing much better right now, today, and delighted about that, but mostly what I wanted to talk to you about was, that this is the exception, not, not the rule, not the norm right now.
MIKE SAKASEGAWA: Yeah, I know.
RACHEL ZUCKER: Okay, where should I start?
MIKE SAKASEGAWA: Well, I suppose you could, you know, you talked about just giving a general update, and you could do that if you wanted to. Or if you wanted to be more specific, you could talk about the difficulty that you've been having with the Sabrina Orah Mark episode.
RACHEL ZUCKER: Okay, I'm going to give a general update, although knowing me, it's going to be full of specific information [laughs], and then I'll talk about how Commonplace kind of fits into this and why I, what I'm struggling with in that department.
So the past few weeks have been really, really hard. And I spend a lot of time trying to kind of figure out why they've been so hard. I don't know why I spend so much time, but they've been really, really hard. I'm really so relieved and delighted that Abram is not in pain. And, he's at chemotherapy right now. He'll be back in a few hours. It's rough. The chemo is getting rougher and rougher, but he is still, as they say, “tolerating it well.” So, what I was going to say is that this period of time, the past, let's say, three weeks, I guess, has felt almost as difficult, and in some ways more difficult, than the three weeks or so that were at the very beginning.
[5:05]
So, from the time that Abram went into the hospital, to the time that he was discharged and diagnosed, were just inconceivably awful, like the unfolding of that. And then there have been so many difficult things since then, you know, moving and coming back to New York and starting chemo and the uncertainty of that. And each thing that we were doing, we were doing for the first time, you know, or the second time, and, you know, the first cycle of, you know, and vincristine and, cyclophosphamide and doxorubicin, or the first cycle of the IE chemotherapy drugs. And, you know, the first time that he needed a transfusion and the first time, you know, like each, all of those things have been, you know, very difficult.
But I think that what happened was, I sort of, with a lot of support from my friends and a lot of willpower on my part, I sort of took us from crisis into a kind of, not-crisis but chronic emotional despair [laughs], but, but right? Which we had to do, you know, and I started writing these updates, which you receive and other close friends of mine receive where I really was, you know, I'm really sort of telling the truth about what's happening in terms of, you know, Abram’s medical situation, but also in terms of like my emotional state and, you know, how I'm doing.
And then a few weeks ago, what happened was that we, I asked the oncologist a question. Basically, like, is there anything else? Is there anything else that, that we could consider, because, Abram has, the more technical than “stage four cancer” is he has metastatic extra pulmonary bone-only Ewing’s Sarcoma. And the prognosis for that is extremely poor. And a few things have been kind of revealed since his initial diagnosis and prognosis, which has made it clear that, you know, the prognosis, which was very poor. is even worse than we thought. And probably his prognosis, you know, even though he's an individual and we have no idea what's going to happen, given his presentation and the statistics that we have, his chance of surviving this cancer for five years, is probably in the low single digits.
And the treatment plan was, you know, 14 cycles of VDC IE, alternating every two weeks. It's a very intensive chemotherapy protocol, with a lot of side effects. And also just every two weeks is just brutal. And in between the, the, the weeks, he has to go to the hospital for checks and you know, all these things. And, one cycle is one day, and then every other cycle, then the next cycle is five days in a row. So he's currently in a five-day chemo. And, you know, I was kind of working on radical acceptance of him and of the situation and of mortality and, that was not easy.
But, so again, Abram had a follow up PET scan. The disease is still so metastatic in so many bones in his body, that it took the possibility of radiation therapy off the table for him. I'm sorry to go into all of the medical details, but you know, this is what occupies my brain pretty much 24 hours a day. Even when I'm asleep, I think about this. So at the meeting where we, you know, the doctor told us like, yeah, we can't use radiation, we can't do surgery. We can't do radiation. All we have is chemo and that's really not great because the chemo with this kind of cancer tends to, you know, really dramatically reduce the amount of cancer, even to the point of no evidence of disease, but it pretty much always comes back. Chemo itself cannot kill all the cancer at all the life stages of the cancer's life cycle, in order to prevent it from coming back.
[10:00]
So, I said, is there anything else? Is there anything else? And the doctor said, well, you know, usually I would say no, but I just went to this conference and there was this Stage 2 study data that was presented as a 7-minute abstract, and there were all of these other abstracts, and there's a chance that based on this study, we would give Abram a, it's called an auto stem-cell transplant. So it's his, they harvest his stem cells and then they use a high dose chemotherapy, which is, the chemotherapy is so high and so intensive that if you were to not harvest and freeze your own stem cells, or get donor stem cells, you would pretty much die, because it just destroys your, your, your bone marrow, to such an extent. So autotransplants are not usually given in the United States. They're not given at all to Ewing’s sarcoma patients because they haven't been shown to work.
But in Europe, they are sometimes given. And this study was saying that for patients like Abram, this study gave this transplant after the eighth cycle of chemo, and the numbers were, were really good compared to, you know, what we're doing now, which is the gold standard of treatment, you know, but it's, it doesn't really work.
And by really good, I mean, it's hard to tell from the study, and I can say more about that if you're interested, but probably nobody needs to hear all the details. It's very hard to tell what the outcomes really are or what the relevant outcomes might be for Abram, but it could be like a 15 to 25 percent survival rate, which is still very poor, but is obviously much better than low single digits.
And so for the past three weeks, I've been waiting to find out if this is going to happen or not. And right now we have a meeting tomorrow at Memorial Sloan Kettering with the head of the transplant department. This guy happens to be from the Netherlands. And so supposedly, our oncologist tried to get more information from the French researchers who ran the study, and the French researchers refused. There's a lot of kind of proprietariness around data, which is pretty heartbreaking to me.
MIKE SAKASEGAWA: Hmm.
RACHEL ZUCKER: There's so few, this is such a rare cancer, that there's so few cases, I mean, fucking share your data, like all of it, all the time, you know? I, I can't, it's very hard for me to accept this piece of it, you know, but in any case, because the transplant guy at, at Memorial Sloan Kettering is European, and knows the French guy, he has emailed the French guy to ask whether Abram would be a good candidate for this, meaning whether Abram's presentation is similar enough to the other people in the study to warrant the transplant. And the transplant has a lot of risks and is very difficult, and I'll say more about that in a minute, but in any case, so I'm now waiting, and have been waiting, for a man in France to respond to the email of his possibly friend or colleague in New York and decide whether they're going to offer Abram this transplant or not.
And we might hear tomorrow. And we might not hear tomorrow. And that's how it's been for three weeks and I'm not entirely sure why it has, you know, all the reasons why it has thrown me into this state of, I don't know exactly how to describe it. I mean, I certainly am experiencing all the symptoms of major depressive disorder and of an anxiety disorder. It doesn't quite feel like that to me. It feels almost like I'm in a fugue state most of the time. Like I just, and sometimes I'll come out of it a little bit and it's very clear, you know, when that happens, and then I'll go back into it. But so much anxiety, so much. You know, I feel trapped. I feel helpless. I feel hopeless. I feel angry. I feel frozen. I feel the interpersonal stuff. Yeah. Jesus Christ. Yeah.
[14:51]
MIKE SAKASEGAWA: It strikes me that the thing, and this has been my thought, you know, because obviously we talk about this stuff off the podcast as well, but it has been my thought over the past couple of weeks that, however difficult the everything has been, up till this point, that it had reached a certain homeostasis, and so that this new thing is a new thing, and it's, it's thrown off your, your ability to feel used to things.
And I think that in a, in a crisis situation, that's, you know, even if it's potentially good news that having something that pulls you out of your sort of mental and emotional routine is very challenging. And it's gonna, it's gonna bring up all of the things that you had been sort of putting to the side just in order to get through each day.
RACHEL ZUCKER: Yeah, that's, that's really a good description of it. And I think it's sort of been a perfect storm because it, it's, this is a very, very hard time of year for me. And it always is. So that part is, you know, very consistent. It's my mother's birthday, then it's Abram's birthday, then it's my birthday, it's the holidays, and then, you know, to have all of those things in the context of this, and then on top of it, like, one of the things that I'm really struggling with, and it, and it triggers a lot of childhood trauma for me, is, I'm in this reality alone. Not alone, my friends, you know, are with me in this, but -
MIKE SAKASEGAWA: You don't have a partner.
RACHEL ZUCKER: I don't have a partner. And so there was also like a week and a half, two weeks, I can't even remember the timeline anymore, but where Abram had heard about this autotransplant thing and said, I don't want to know about it. And I don't want to be a candidate. I don't want to do that. I don't want to know about it unless it's real.
And so this is kind of how it's been, like one of the ways in which I am supporting Abram is to process all of this information, to do the research, to talk to as many people as I can, without having him be present, you know, for these conversations, which is what he's asking for and what he's wanting, but he's legally an adult, you know, and, and, he has a father. His father is not involved in this part of it, in, in the decision making or the research or the processing of the information. He is involved in other ways, but he is not, the, the, the disappointment that I feel around his participation is extreme. Is, is really, it's, it's its own trauma, and to have to have as much contact as I have with him, you know, after doing the very hard work of getting divorced is, is really devastating on top of, you know, this, this situation.
So I think you're right. I think it was a shift. I think it caught me by surprise, but also like, it's just, it's such an insane moment, like the specifics of this situation, it's like, you know, if they say, which I hope they do tomorrow, yes, we, let's do the transplant, you know, that is good news. And it injects some hope into this situation. And I think that when hope got injected into the situation, even by the possibility of this transplant, what happened to me was I started to have hope about other things, like my ability to communicate with Abram's father. And that's not something that has any hope, you know, or, and, and so I, you're right that I, I just wasn't prepared in a way for hope.
But I also want to say like, I will 100 percent show up, you know, I'm in this forever with Abram. Like I'm, I'm, I have no doubts about my own capacity to support Abram. I don't want, there, there are, let me say this. I will do it and I will do it well, but Abram, if he, if this transplant happens, Abram will need to be in the hospital for four to six weeks, assuming things go well.
[19:55]
And he will only be allowed, he, he's allowed two caregivers, or, one caregiver with… two parents can split the role of one caregiver, but that's not what's going to happen in our situation, for a lot of reasons. So it will just be me. And I have a lot of medical trauma of my own. I do not like the hospital. I, I have a very hard time maintaining my mental health. If I'm at the hospital for more than, like, six hours in a row, I just really start to, I can feel myself really losing it. And I don't know if this happens, when it will happen. I don't know… there's no visiting hours, like, often in pediatric oncology, which is where we are, it's younger kids and like, you know, the parents take turns and don't leave the kid alone in the hospital, because it's a little kid, you know, or a baby. And I don't think that anybody is expecting me to spend six full weeks in the hospital without a break. But I know myself well enough to know that it is going to be extremely hard for me to be there, but much harder for me not to be there.
And Abram will be isolated. He, he can't go to the bathroom himself. He can't go into the hallway himself. A lot of the tools that we're using primarily inhalation of THC that, that are really essential to Abram will not be available to him. Cannabis will be, but not in the form of inhalation, which is, has really been helpful. And I'm scared as fuck.
I don't know how I will continue teaching, depending on what the timing of this is. Abram is on my health insurance, which I have through my job. I don't know what, who will take care of my dog. I don't know, I have two other kids. I'm scared. I'm scared for myself. I'm scared for Abram. I'm, I'm, I'm, you know, he could die, in the hospital, which I think, you know, he could die of an infection. He could, you know, it's going to be much harder chemo than what he's already doing. I'm afraid of, not afraid, but I, I am imagining moments where he is, it's really suffering and basically looking at me and saying, like, why did we do this, you know?
And if we do it and it works, which is what I am most hoping for, I'm going to be very clear about that, the chance of him developing a secondary cancer from this high dose chemo is extremely high. So if tomorrow, they say no, we're not, it's not worth it, you know, all of that is… we don't have evidence that going through all of those things really makes the prognosis… improves your prognosis enough, so we're not doing it. That is going to be so fucking devastating, not a relief, it's not going to be like, Oh, great. I don't have to go to the hospital, because in order to consider this auto transplant, we had to, I had to look in the face of these numbers and this prognosis and, and, and say, it is overwhelmingly likely that if he makes it through these 14 cycles of chemo without the auto transplant, he's going to die of this cancer in the next few years. So how do we go back to doing this fucking chemo that we're already doing, that isn't probably going to work? And what does that look like, you know? And so it's just… the enormity of it. It is just… like I don’t…
MIKE SAKASEGAWA: It's hard to have hope re-injected into a situation where you've been, even if you haven't completely given up on it, it's still something where you've been trying to, as you put it, reach a state of radical acceptance. And getting used to the idea that you are in a situation that is outside of your control, like completely outside of your control, is a very difficult thing to do, and it's more difficult for some people than others. And I know that for you, that having the ability to feel some sense of agency in your life is really important for a lot of reasons.
And so having to, having to let go of that in this situation has been really, really difficult for you in an ongoing way, but at least before all of this you were able to have some sense of continuity or some sense of stability in the instability. And so having this thrown into it, of course that's going to be bringing up all of the same things over again, because it's taking you out of that stable crisis.
[25:19]
RACHEL ZUCKER: Yes. Yeah. And, you know, maybe that's a good segue, actually, to talk about Commonplace because, you know, if you, if, if I want to think about this as like kind of three stages so far, so the diagnosis from, from Abram going into the hospital until the first chemo is sort of seems like one stage. And then, you know, from that first chemo or from switching from one doctor to another, to the question of the autotransplant coming into play is like the second stage, and now we're in this, you know, third thing, which is this uncertainty again, right? And each part of this is a medical risk/benefit analysis that's constantly, you know, going on in my mind and in my conversations with the doctors and, you know, in, in thinking about how to support Abram and all, all the questions about like, yes, this medication has risks, but, you know, it has these benefits. Do we do it? Do we don't?
But it's not just the medical stuff. It's also like, okay, so if I have suddenly a very, very limited amount of time and energy, what do I spend it on? And how do, like, what do I need to do, what's going to make me feel good, what's going to make Abram feel good? And, you know, as you know about me, I love to work, and I had a million projects going. And just when Abram got sick, I was really at this stage where I thought that I was at this new stage of parenting where I didn't have very much responsibility, and I was going to kind of do… I was going to finish my first draft of my novel. And I was trying all these things on Commonplace. And I, you know, you and I had started, Hey, It's Me together. And, you know, I had the school and I was teaching at NYU, and I was teaching at the Commonplace School, and like all this stuff. And so, you know, as I have, as my life has radically shifted and like, I barely live in the world of well people anymore. But one after another of these things has fallen away.
And you know, in the beginning I remember saying to you, and that episode that we had with David Naimon too, like where I was like, I want other people to try to help me maintain a part of my life where I have a life outside of Abram’s cancer. And that has, that's still a good goal, but that has become increasingly impossible. And actually sometimes it doesn't even feel good. It just feels like horrible pressure. Like I had agreed to do this class. I can't even remember what the school is called. It's an online writing school, and I had agreed to do it before Abram got sick. I completely forgot about it. The woman, very kindly, you know, reminded me of it, and they were reading my book SoundMachine, and I almost canceled. It was December 10th, the night before Abram's birthday. And I was, I was like, oh, don't cancel. It's going to make me feel good to show up to this group of people who have like all read my book. Like, isn't that incredible? People read my book! Like, and they're going to want to talk to me about my book. And I already wrote the book. I can do this. Like, this is going to be good for me, you know, and I'm going to get paid. I mean, I think I got paid like $150, but okay. Whatever. It was like, I did the risk/benefit analysis and I was like, this one, I should say yes to.
I got to tell you, Mike, it was like, it was like the fucking Twilight Zone, like the very nice instructor was like, could you read us this poem on page, whatever, whatever. And I read this poem about Moses being like eight years old and washing raspberries for him and he's putting them on his fingertips. And then the woman is saying to me, like, you know, oh, you really, you, you know, the last line of the poem is, I don't expect you to understand the love… the way my love for you, the way, what is it? I have the book right here.
[30:00]
“The life my love for you has made me live.”
And, you know, I was talking about having a normal, healthy eight year old child, you know, and that feeling of being a parent where you're like, I, you know, I can't ever kill myself. I will keep my shit together, because I love this child. I love these children. And, and it's like this deep karmic bond and responsibility that I have with my children, and this love that is so deep and so profound, but also so terrible in this way, like awesome and huge and more than life.
And now I am in this place where I have to, you know, take this journey with my child, no matter what happens. And it's so hard. So, you know, the woman asked me to read the poem, I read the poem. And then she says, like, you know, some question about like, you really write well about motherhood, you know, how is that? [Laughs]. Like, you know, or she's, what did she say? How did, how did that arise?
MIKE SAKASEGAWA: That would've been, that would've been a fraught question for you even a year ago [laughs].
RACHEL ZUCKER: I know! Or she had me read a poem in which Josh and I are married, you know, 'cause, 'cause SoundMachine I, I published it in 2019. I didn't expect this. I don't know what I was thinking. I read the poem and, you know, the poem ends with like, we're still there, we're still alive, you know, there, the, this couple and, and she says the, the woman says like, you know, you really, you really get at the complexity, but the love, the enduring love of a long marriage, how did that arise? And I'm like, the long marriage? Because we're divorced now [laughs]. Like, I just, I, so, okay, this, sorry, that was a digression to basically say -
MIKE SAKASEGAWA: No, I mean, all of these things, going back to your older work is always going to be an excavation of things that don't exist anymore. It's always going to be some form of archeology. It's always going to be fraught, no matter what happens, even if you were still married to him, you know, but yeah. Yeah [laughs].
RACHEL ZUCKER: So in any case, it did not turn out to be a good choice for me to go to that class. It really, it required, I ended up missing Judah’s jazz concert cause I couldn't emotionally do both of these things, you know, and I felt bad about it, whatever.
So this brings us to Commonplace, which is one of my great loves. I just, you know, and some of the people who are supporting me the most right now, it's about half and half of people who, you know, like my friend Joan, who I met on the first day of high school, and, you know, she's a longtime friend, but a lot of the friends that I have, like Claudia, I met her through Commonplace, she was a fan, and then she took classes with me, and we started a writing group together, and, I mean, she's on the phone with me or in contact with me in this past three week period, I would say most of the day, every day. She often helps me, I, I get frozen and I, you know, I'll sit down on the couch and I'll, I'll know that I'm so hungry and dehydrated that I just, I feel exhausted and dizzy and I don't know what to do. And I know that I need to just get up and get a glass of water. And I can't. I just can't move. I just can't. And I will sit there and I will, I will say, get up now. And I'll do a little countdown and I'll, I'll say, okay, you know what? Give yourself five minutes or, you know, whatever.
And finally I'll text Claudia and I'll say, I'm frozen. I can't get up. I, I'm so hungry and I'm so thirsty, you know, and she will talk me through it and, you know, I, I just don't think it's realistic for me to be making Commonplace right now.
MIKE SAKASEGAWA: What do you think it would take for you to be able to accept that?
RACHEL ZUCKER: Well, I, I'm still thinking of it as a hiatus, and I still have my crazy schemes and plans, like, because I don't think I have accepted it [laughs].
[35:00]
And so I keep thinking like, well, how could I continue making Commonplace right now? And I think that, well, there's, there's a few different parts of it. There's what happens to the archive, like who maintains the archive? And as you know, there's all sorts of weird technical shit, like some every once in a while, some of the episodes just like aren't available. And, you know, there's like weird stuff. It doesn't just like stay there. But so who's maintaining the archive is one question, and then I have about, I think, six episodes that are recorded, but not produced. So I would like those to be produced. And then I'm, I'm continuing to, to do Reading with Rachel salons and record that. And the idea is that those would be future episodes. So either those or other new episodes, that would be the third part of Commonplace.
So one thing that's happened, and I've talked about this with you on, Hey, It's Me, is making, Hey, It's Me with you, you do all the work. All I do is show up [laughs]. I show up. I cry. I tease you, you know, and then a few weeks later, you send me the edited and mixed audio. And then I, usually what happens is I say, it's great, I'm not sure about this, and then I'm like, you know, it's, it's great. It's great. I've never, I don't, I mean, almost never, I've never had any, you know, you know, complaints or suggestions, and then it appears, and then there's not, I don't know how many people listen to it, but some people love it. Some people do listen and love it and give us feedback. And, and I love doing it.
You know, it's a completely different animal, though, than Commonplace. And I can't, I can't do Commonplace on my own. And I don't have a partner like I do with you for, Hey, It's Me. And so I have been trying to just finish one episode at a time at my own pace. And that's not working. And then I've been trying to like, imagine what would I need in order to like, like how is there, is there a producer that I could partner with? Is there an institution? Is there, can I sell, I don't really mean for money, but, you know, can I sell the archive to an institution who will take care of it and, you know, keep it active and keep it available?
Can I, should I hire a producer to help me with the episodes that I already have that aren't produced? Do I try to do what I've been trying to do for years, which is to find a full partner who wants to really, really make Commonplace with me, which right now would actually mean doing 90 percent of the of the work, other than the recording work, it wouldn't always be that way, but that's where I am right now. So I've been trying to do all these different things at once, but in part because of the nature of podcasting, I don't know if you have this problem. But when I work on an episode for too long, it's the worst. It's like I have it all in my head and I need to finish it. And when I, when I work on it and then I have to stop and I go back and I stop and I go back, you can't do it that way.
So this is not working, and what I need to do, and what I am going to do, is finish the Sabrina Orah Mark episode, which is a very good episode. And I'm very proud of it. And I really like it. And it's very much of a Commonplace, you know, conversation. Like it has a lot of the elements that I most like about it, about the podcast. And I need to put a very short thing in the, in the intro that just says, Commonplace is going on hiatus for at least three months.
And, but I have not been able to write those sentences into the introduction, and finish this episode and record, you know, do all this stuff, in part, because I, I'm having so much trouble letting it go, because I feel so alone, and Commonplace has been such a source of connection for me, and, and because I want to have a part of my life force be creative, you know, not just caregiving. And it's really hard to give it up, but, but this is just not working.
[40:06]
MIKE SAKASEGAWA: Sometimes in life, there just comes a point where even the things, where you, how to say this, sometimes things happen and our life doesn't get to be what we want it to be. And that's a very, it's a very difficult thing, you know, and it's even more difficult when we're not able to see when or how that's going to change, and I think that in this situation, you know, like I see going through this and the whole thing, the whole time, it's been a, a struggle for you of trying to push yourself towards acceptance. And also not wanting to do that, you know, of having moments of acceptance of clarity, and then also having moments of deep surprise that this is where you are. And I think that's all very normal. I think that's all, I think that's how it would be for anybody in the situation that you're in.
Even before, even before this situation with Abram, you had been trying to push your life in a certain direction, and fighting against the fact that your life had a different direction pushing you in, and I know that's been really challenging for you, and it's okay for that to be challenging. It's okay to not want the thing that you know is going to happen, you know? It's okay to, to not want the thing that you ultimately know you need, you know, it's okay. These things are hard. They're hard for everybody. Anybody going through what you're going through would be having a really hard time.
RACHEL ZUCKER: I don't think, how do I say this? There's two different things that I'm thinking. One is, a lot of the problems that I'm having now are just a very intensified version of problems that I've had for a long time. And I think that's part of what you're saying right now. And, you know, I was already very aware of my workaholism and my overwork and my overextended-ness before Abram got sick, and, and wanting to continue my creative work in a, in a very rigorous way, but also with a little more peacefulness and gracefulness and, and gentleness, you know, and a little less striving, you know.
And so I was already really struggling with that, and talking to you and David about that and, you know, trying to think about that. And some of these problems are like, you know, nobody's going to be upset. I mean, that's not exactly true. I was going to say, no one's going to be upset if I stop making Commonplace, nobody's going to notice. That’s not true.
MIKE SAKASEGAWA: That's not true.
RACHEL ZUCKER: I know. But it is, it's, it's very confusing to me. It's like this podcast, I don't make money at it. It's not my job in that sense. There are other literary podcasts. You have one of them [laughs]. Like, I don't need to do this.
MIKE SAKASEGAWA: Even fewer people care about my show than care about yours [laughs].
RACHEL ZUCKER: But it's, I mean, you and I talk about this. We, we talked about this all the time before Abram got sick. Like, why do we do these podcasts? It's so much work. It's so much effort. It's time. It's money. It's, you know, a lot of it feels great, and a lot of it feels disappointing, irritating, annoying, you know? And so it's, it's a, it's a weird thing in a way to, to be this torn or this conflicted or this, to have this much trouble giving up, you know, or putting on hiatus, whatever we want to call it, you know. The podcast, writing my novel, you know, the other things that, that are, by the standards of capitalism and, you know, normal people, irrelevant, you know?
MIKE SAKASEGAWA: But I mean, you know, it's not irrelevant because, and it's not even not irrelevant just, just because of the fact that you do have an audience, or that I do have an audience, right?
[45:00]
However small that audience might be. It's not irrelevant, because we are, we've never been the kind of people who are making the work that we make with the expectation that it's gonna be a huge deal for, you know, and become a mainstream smash success. Like, I mean, I think that both of us, if we're being honest with ourselves, do kind of wish that would happen, but we both have the understanding that that's, that that was probably never in the cards for the kind of work that we want to make. But we do these things because we get something out of it. And that means it's not irrelevant.
RACHEL ZUCKER: Right. And, you know, you and I have talked about our relationship to audience, and I think I was really working on this in my therapy and with my guided psychedelics and, you know, stuff like that. But I, I do think that for me, there's something about my attention seeking and the, the audience, there are, there are ways in which I do not feel real without an audience. And so, I've been working on feeling real without an audience, but I haven't gotten there yet. And so, you know, just when you were saying like, it's not irrelevant, I had this picture of myself as like, you know, no Commonplace, no novel, no outlet, no audience, no, no connection, like, and just in the fucking hospital, you know, alone, with Abram and, and, and just, you know, it's so real. It's so bodily, and like, unrelenting in its, in its realness, you know, it's not a metaphor. It's like, it's, this is literally happening, like, literally, my child is gravely ill. Even though it's also so fucking surreal, because he's not in pain right now. And he's mobile. And he's himself with all of his, you know, really funny, dark humor and his, you know, all of our mom-son dynamics.
So it's, it's, it's like surreal that he's like dying, because he doesn't, he's, he's just him. In some ways he doesn't even seem sick. In other ways he's, he's like extremely sick, you know, and like walking around with a backpack that's attached, that is attached to a port in his chest and like, you know, gagging and dry heaving and spitting into a cup all the time, you know, and it's like, I, part of me feels like I can't, I can't take care of myself enough to take care of Abram while I'm also trying to do these other projects like Commonplace. It's just starting, it's just clearly, it's just starting to feel too bad for me, because it just feels like a failure over and over and over again when I don't complete what I want to complete, even if I reduce the expectations on myself. It's just, I've gotten myself into this terrible cycle where it just, it just feels bad.
But to do what I'm doing in first person, literally, without an audience, without imagining this as, I don't know, part of a larger narrative or something. Like, I almost feel like, I mean, maybe that maybe, maybe I was about to say, like, I can't, I can't do this without Commonplace, but that's not true. And I think the reason it's not true is because of, Hey, It's Me.
MIKE SAKASEGAWA: Well, there is that. Something I've been kind of thinking about, and this is perhaps a bit of a tangent, but I think it's also relevant, is, you know, I've been, I've been having these conversations the last few days with, with a woman I met, and one of the things that came up in that conversation was this feeling that most of the meaning that I make, most of the things that feel meaningful to me in my life, have to do with other people. And I've been thinking a lot about how, when I'm by myself, you know, like when my kids are not in the house and I'm fully by myself in the house, how that time feels meaningless, because I'm not I'm not using that time in a way that is directed towards other people, or that is even being witnessed by other people.
[50:06]
RACHEL ZUCKER: Yes.
MIKE SAKASEGAWA: And, you know, hearing you talk about this need to have an audience, which is something we've talked about over and over again on this show, and off the show [laughs], it's like our favorite thing to talk about [laughs]. Like I wonder, I wonder if maybe part of it is just that, like that we don't feel like what's the, what's the way to articulate this? Like the, the way that's coming to mind is to say like, we don't feel worthwhile on our own terms, you know? You know?
RACHEL ZUCKER: Yep Yeah, We’re working for a living. But, like, literally to be, to, like, take up life space.
MIKE SAKASEGAWA: Yeah. And I think that, like, I wonder how much of needing to have an audience, even just outside of, like, to, to actually have like, a literal audience, as opposed to just having people in our lives who are a witness, you know? Like, how much of that is just something of trying to fill whatever hole we weren't able to fill… I don't know. I don't know exactly where this thought is going, but it seems like you kind of get what I'm saying.
RACHEL ZUCKER: I really do. I really, really do. I mean, I just have -
MIKE SAKASEGAWA: But you know, we, we do have this. And, you know, I think one of the things that's really challenging about Commonplace that, that it's not just the amount of work, right? Because, you know, I'm, I'm producing two shows right now. And they don't feel the same at all. And even though the amount of work, at least the production part of it, you know, cause like for this, we don't have to deal with like booking guests or doing research or all of that other bullshit. It's not bullshit. It's one of the better parts of all of that, but whatever, just on the production side. There is something that feels really different about Keep the Channel Open and Hey, It's Me. And one of the biggest differences, even though the work itself is very similar, is that, Keep the Channel Open is solely an expression of my own desires as a podcaster.
And Commonplace for you, like even if, let's say, let's say for example, that somehow magically I was able to, to step in and be your producer on Commonplace, which we've talked about, and we, we both of us know that I can't do that, but let's just say I magically had, you know, an extra 20 hours a week that I could, right? That would alleviate a lot of the difficulty for you because, you know, we have enough of a working relationship on this show, that you trust that I'm competent, and that I would be able to figure out how you want it to be done, and all of that. But in some ways it wouldn't alleviate anything because ultimately you're still the one who has to make the decisions.
RACHEL ZUCKER: Yeah. Yeah. Or Commonplace would have to be a really different show, you know? Yeah. And, yeah, I mean, it is so different like a week from today I have the next Reading with Rachel salon and Maira Kalman is coming. Do you know Maira Kalman's work?
MIKE SAKASEGAWA: I don't.
RACHEL ZUCKER: Oh, I just, her work makes me so happy. She's an illustrator and graphic artist and a cartoonist and children's book author and, and a writer. And there's just something so whimsical and joyful and very dark, very dark in her work.
MIKE SAKASEGAWA: [Laughs]. I knew you were going to say that.
RACHEL ZUCKER: Like so, it's great. It's so great. And I can't believe she said yes. And I have just been struggling to prepare for this a week from now, like I'm really almost at the point where I can't do it, like the, it's, it's not social anxiety, but it's a, I'm just not grounded. I'm just not able to focus. I'm not able to, I mean, I'm incredibly self-centered right now. Like, and that's how it is. You know, it's like, all I can think and talk about is Abram.
MIKE SAKASEGAWA: You're actually not utterly self-centered right now.
[55:00]
You're not being incredibly self-centered right now, which is actually a big part of the problem is that you have so much of a requirement to be directing so much of your energy and your emotional bandwidth outside of yourself. You're not being self-centered right now. You're being the opposite of self-centered. You're being like, self-sacrificing. You're being, you're giving your, your whole self up, and it's something that you have to be doing right now. But I mean, the reason why you feel self-centered in all the other aspects of your life is because of the fact that you can't be self-centered in the main part right now.
RACHEL ZUCKER: Right. It's true. It's just like, I've given everything I have, and I'm giving everything I have, you know, to Abram right now. And then, I mean, Judah's applying for college! His college applications are due in two days. Like, I still have two other kids who need me and need parenting. I mean, I just, I got nothing left. But I don't want to be in a Zoom room with Maira Kalman, whose work I have loved for years, and fuck it up. You know? And I just, the, the, my level of anxiety because I don't, I, I, I can't really, I mean, maybe I can, I was going to say, I can't really just be my, I can't just show up and be myself, you know, like, I, I don't want her to feel disrespected. I don't want her, I've been so invested. In being like, “a real poet,” whatever that means, but also with being like a responsible person who shows up prepared and on time all the time, you know, and I bring both of those to Commonplace, you know, like, I have high standards, and I, and I never want the other person to feel, you know -
MIKE SAKASEGAWA: The thing about, that has always made Commonplace different than any other show, you know, there's things that David does that you don't do. There's things that I do that you don't do. There's things that like, Gabby and Dujie and Luther did that you don't do. But the thing that you, that has always, always made commonplace unique and vital, is that you put yourself into the conversation more than any of the rest of us do, and you always have. And it has never been a thing that feels selfish. It has always been something that feels generous and generative.
And I know I've told you that before, there have been times in the past, where even before I knew you, there have been times where that didn't go perfectly on the show. And I could hear it in the episode. I could hear it in the conversation, that you showing up as you in the conversation didn't go maybe the way that you wanted it to, or maybe the way the guest was expecting it to [laughs]. And there was some tension, and that's always been part of it too. And it's okay, you know, and not to say that everyone who says yes to being on Commonplace knows, like, has listened to every episode and knows what to expect, because that's never going to be the case. But you have a way of being in conversation with people that, it's like, the way that you, that you are in, in, in these conversations invites intimacy, and the times when maybe it hasn't gone great has maybe had to do with the fact that other people, you know, not everybody wants that, right? Not everybody wants to show up to an interview and be and have a truly intimate interaction with someone.
But you showing up the way that you do has always like, even before I knew you, it's always been something that feels very inviting. That it invites the other person to be in that, in that intimate vulnerable space with you. And I'm not saying what you should do with Maira Kalman, and I'm not saying what you're going to do. I'm not trying to give you any advice, but what I am saying is, if you show up just as yourself, if you bring your whole self, including your hopelessness, to that conversation, maybe it will go well, and maybe it won't, you know, maybe it will, it will, maybe she'll meet you there and maybe she won't, but it'll be okay. And at least in terms of your audience, that's one of the things that they love about you. And that they always have.
RACHEL ZUCKER: You know, I'm very committed to the way my teaching and podcasting have developed. So it's, it's very real. It's really nice to hear you say these things. You've said them before.
[1:00:00]
Thank you for saying them again. You know, one of the things that I've noticed, last semester when I was teaching undergraduates at NYU is, my teaching style is so interactive, interpersonal, improvisatory, but it's, it's, you know, I've been teaching for almost 30 years. And so I have enough experience and I've done so much work on myself psychologically and in terms of my pedagogy. And I know the content matter, you know, I know the subject matter that, you know, I'm prepared. I have a syllabus, I have all the stuff, but like, the way my class really, what's great about my teaching is I'm really listening to what's happening in the moment. I'm waiting. I'm meeting the students where each one of them is, individually.
And when Commonplace is working, that's what's happening too. I have done tons of listening to other podcasts and reading and, you know, I do a different kind of preparation than David does. It's, it's, it's much more emotional and psychological than like, literary in the same way, right? Like, I know I'm not good at recalling themes and dates and stuff like that. of
MIKE SAKASEGAWA: Neither of us can do what David does, right? But what you do, David also can't do what you do.
RACHEL ZUCKER: Right. So but -
MIKE SAKASEGAWA: I think he'd be the first one to say that [laughs].
RACHEL ZUCKER: But being a good listener, and being able to like be in the moment, either in the podcast space or in a teaching space online or in person, requires a certain amount of emotional wellness from me and, and a certain kind of focus because you know, what's happening to me in the classroom is I, I go into this, I don't know how to describe it exactly, but like a student will be talking to me and I, my brain is doing this. A student is talking, a student is talking, other students are listening. I am listening. I am listening to a student talking and the student is talking and they are saying this and we are in a classroom at NYU. That is what's happening because I am a teacher and this is what's happening. Now the student has stopped talking. It is my turn to respond. What the fuck am I supposed to say? I am okay. I am okay. I am okay. I am breathing. If I start crying in front of this classroom, that is not the end of the world. It's okay. It's okay. Why don't you say, blah, blah, blah.
It's like, this is what my brain sounds like. Like, it's not good. And sometimes the wrong thing comes out of my mouth. Luckily for me, the wrong thing is usually like, I'm sorry. I have no idea what you just said. You're going to need to repeat it. You know, it's not like something inappropriate. Like, you know, some people do that, but I've had the same experience. the past few weeks preparing for Maira Kalman. I'm listening to, she's on all of these podcasts. She's on Krista Tippett. She's on all the things. People are asking her the stupidest questions [laughs]. Like people are interrupting her. People are, don't understand her humor. People are, you know, putting themselves into it in ways that are just like, what are you doing? It's Maira Kalman! What are you asking her? That's the dumbest question. And, and, and as I'm listening to these other podcasts, I'm so fucking mad, because I'm like Commonplace is better than this. It is just better than this [laughs]. I am a better interviewer than this. I am, I am a better reader. I am a better thinker. I'm a better asker. I'm a better listener.
The thing is, the thing is, right now, this is really hard for me to just get myself… I can't even make myself read Maira’s books!
MIKE SAKASEGAWA: I hear you. I hear you.
RACHEL ZUCKER: It’s like, just, my brain is not working right now in this way. And when I go into the, to the listening space, I can barely hear over the sound of my own, whatever it is that's happening in there.
MIKE SAKASEGAWA: Yeah. I hear you. And I think that what you're describing is, I mean, essentially what you're describing is coming to terms with a new disability. You know, like I have my friend, Martha Crawford, I don't know if you know her. So she's a, she's a, a woman that I met on Twitter a long, long time ago. And we've been social media friends for a long time. And she's, she calls herself a heterodox therapist [laughs]. But she went through, you know, having a unique cancer and basically expecting to die from it. And then it went into remission and now she's sort of come out the other side of that.
[1:05:18]
But one of the things that she has talked about is, you know, going through the experience of chemo brain, and how frustrating and scary it was to, because she was a person for whom, you know, recall was really important, both in her line of work and as a writer and as a thinker. And being able to do these things was really important for her and for her sense of self.
And then it came to a point where she just couldn't anymore. And there are some ways that those, you know, now being several years out from being in chemo, that a lot of that ability has come back, but also that her brain is just kind of wired differently than it used to be. And so there are some changes that are probably permanent.
RACHEL ZUCKER: Yeah.
MIKE SAKASEGAWA: And that's challenging. On the other hand, it's also, even if you don't go through an experience like that, our brains are always changing and we're not the person who we used to be, right? It's just that having to come, being faced with that in such a, a, a quick way rather than it being gradual brings it into sharp relief.
RACHEL ZUCKER: Yeah.
MIKE SAKASEGAWA: I hear what you're saying. It is frustrating. I also hear, and I agree, that you are a better reader and a better listener and a better asker, you're a better host than all of these other people, you know. I mean, even the other people who are very good at what they do. Right? And if we're being honest with ourselves, and it is a frustration that I have as well because I also listen to other people's podcasts when I'm preparing to talk to someone, and my normal experience is frustration because the other, these other hosts are not as good at it as I am. And oftentimes they have the much bigger shows than I have [laughs]. But what if, so you're used to operating on the level that is way better than these other people, but what, and what if, you know, you just were only able to be a little bit better than them, still be a little bit better [laughs], you know, or even if you're better than them, but just in a different way, you know?
RACHEL ZUCKER: I just don't trust myself and that feeling of going into that interaction and not trusting myself, like, is so uncomfortable and pain, like almost painful for me, you know, like it's kind of like, because you're right, like I've had bad Commonplace episodes, you know, or less good ones, or very uncomfortable ones. And I've, I have recorded episodes when I'm very severely depressed or, you know, not having a panic attack, but, you know, really having some very intense generalized anxiety, and I can hear it, you know, in the tape. And I think what's happening to my brain right now is like just this cocktail of grief and, and terror and helplessness is just, it's making it very, very hard for me to think, you know, and to, and to function, and to prioritize, and to make decisions. Like I find even the simplest decisions right now to be overwhelmingly stressful, you know, which makes it very difficult to host a podcast, you know.
I'll say two things. One, there's a podcast I really want you to listen to. It's called The Telepathy Tapes.
MIKE SAKASEGAWA: Oh, yeah. You mentioned that in one of your messages.
RACHEL ZUCKER: Yeah. I'm really curious to know what you think of it. I'm re-listening to it, which I never do [laughs].
MIKE SAKASEGAWA: I've been a little apprehensive. You know, I can be a little allergic to woo.
RACHEL ZUCKER: Yes. That's part of why I'm interested in what you have to say. But in any case, it is about telepathy. It is,it's about non speaking autistic people who have telepathy of, of, or shared consciousness. There's so many things I want to talk to you about and ask you about, but what I'll just say is that one of the things this is bringing up for me listening to this podcast, is the extent to which I think that Abram and I are having a kind of, you want to call it deep empathy, you want to call it telepathy, you want to call it shared consciousness, I don't know.
[1:09:57]
But I think that what's happening to me is both, my own grief and terror and helplessness and rage and all of that, and, because of my relationship with Abram, my particular relationship with Abram, and the way that he is needing to go through this by offloading the experience as much as possible, I am experiencing this kind of like shared and I, and I, and I really am trying to stop this, you know, because I don't think it's actually helpful, but like, the dog threw up yesterday and I had this unbelievable wave of nausea, right as Abram was, you know, it wasn't even in the house was really struggling with the worst nausea that he's had so far. Like this, and this keeps happening, you know, or like, you know, there are days where I'm like, I cannot get out of bed. Why am I so tired? And I think it's both things. I think it's his tiredness and it's my own tiredness as a caregiver and, you know, all of those things. So, I think that I have several new disabilities happening to me, and some of them are not even my own [laughs], like, some of them are my kid’s.
The second thing I was going to say is I'm dreading next Sunday and talking to Maira Kalman, but I'm also like, I think it's so hard for me to give up Commonplace right now because, so I had known Maira work, I don't know her. I'm just, I don't know why I'm calling her Maira, but whatever. I had known Maira Kalman's work for a long time, and loved it, and had all these, you know, had this very strong sense of affinity, even though I'm not a visual artist at all, like with her style and her almost like her emotional palette. But I didn't really know that much about her biography until I started preparing to have her, you know, on Reading with Rachel and to teach her book, you know, to the other people.
And so one of the things that I found out is that her husband, Tibor Kalman, who she met when they were 18 at NYU, because they were both failing out of different classes, and he was a very important designer, died at age 49. So Maira Kalman is now I think 75 or 76, and Tibor died at age 49 after a five-year battle with non-Hodgkin's lymphoma. And I, I didn't really know that. I knew she was married to this guy named Tibor Kalman and that he was a very big deal in the design world. But like, I don't really know very much about design. So I wasn't paying attention to that. And in all, in a lot of these interviews, she talks about that the, you know, that his death was devastating, but, she went on.
And in fact, her work, her, her work and her career are almost entirely post-Kalman’s, Tibor Kalman’s death. It's not that she wasn't making things before he died, but it, it, she, she, she produced much less, and was very much in the background when she, she was, when they were raising their kids when the kids were young, and then he, then he was sick and then he died. And she really blossomed. This is very poignant to me. This is very meaningful to me. This is very hopeful to me. This is very, you know, to see a Jewish woman who's lived her, most of her life in New York City, who is, has a full range of emotions, who is not, you know, compartmentalizing, who is thriving, she, she, she collaborates with her son.
Like there's so, there's so much in her biography that I find so sustaining right now, you know, to me that I wouldn't have known had I not been doing this deep dive into an artist that I already thought I knew well, you know, and the question that I most want to ask her is, you know, she talks a lot about kind of, going on with her life after her husband's death, but I've never seen her talk about what it was like when he was sick. I've never seen her talk about whether she was making art then, and I really want to know, like, what, what it was like when he was sick for those five years.
[1:15:00]
But I don't, I don't know how to ask that question in, you know, in a, like with Commonplace, I always have what I call the heart question, H E A R T, not H A R D, which is, there's lots of things I always want to know about an artist and their work and that particular work that we're talking about and how it fits in with all their stuff and my, how it interests me and what I can make, you know, inspired by it and all that stuff. But there's always a question underneath those other questions that is like the question you cannot ask in polite society. The question that like, that I feel I, I need, as a human being who's really struggling to, like, be alive in the world. And that's the question that I, that I know I kind of won't forgive myself if I don't figure out how to ask it, you know?
And, you know, with Eileen Myles, ‘cause they were the ones who came, they came before Maira Kalman, they were the last guest I had. I knew what the question was. And I did manage to ask it. Yeah, I did. I did. I think I feel, I mean, I know Eileen better. I mean, Eileen is very scary and intimidating [laughs], you know, like really, so that was very scary, but it was okay. And also I've had Eileen on Commonplace. Eileen knows me, you know, and Eileen is in the, in the obviously like the, in the poetry world. So like, Maira Kalman had never, doesn't have any idea who I am. Do you know what I mean? Like it's, and I feel like since a month ago, my mental capacity and my emotional capacity has plummeted.
So I, I think what I'm, I'm, this is such a long winded way of saying this, and we should probably, you're gonna have to figure out how to wrap this shit up. But like, what I'm trying to describe is, there are things about making Commonplace, and certainly things about writing my novel, that feel as essential to me as food and water and sleep, and as essential to my sanity and to my capacity to do this incredibly hard thing that I'm doing, but I can't get those things in isolation, because it requires all of this other stuff that I just don't have the capacity for right now. And I think that's why it's taken me this many months to realize, like, I got to go on hiatus, but, because I'm, I'm, I'm afraid actually, you know?
MIKE SAKASEGAWA: One thing I just want to point out here, is that, without taking anything away or invalidating what you're saying about having a diminished capacity, because that is evidently true. But in some ways, I think that your capacity is not as diminished as maybe you realize. Just because, what you're describing about having that heart question, and this is something we've talked about, we've been talking about, for a long time now. For me, I used to have that with my guests on Keep the Channel Open, and most of the time. I don't anymore. You know, most of the time there isn't actually a burning question that I have that I need to be able to ask. And it's not that I don't connect with my guests. I think that I do. It's not that I have anybody on my show In a shallow way, or that I ever invite anybody onto the show who I, who I am not interested in at all. But I don't feel that burning question with almost anybody anymore.
And I do feel that I'm able to reach a point of connection with most of my guests. And there is something very gratifying that I get out of that process, but it doesn't feel as urgent to me to do it anymore. And I think the fact that you still have that urgency means that there is still a part of you that isn't fully touched by everything else that you're going through. That there is still some turning outwards, you know? And I think that's really interesting. And there is a hopefulness, at least to me, in hearing you describe that. I don't know if that's something that you can do anything with, but I think that It's something, and I think that, you know, like I was saying, it's okay for this to be hard.
[1:20:00]
It's okay to not want to give that part of it up. It's also, I think, important to understand that even if you do put Commonplace on hiatus, as I think that you recognize you need to do, and even if your capacities are diminished, there are still these other things that you're doing, like whether it's Hey It's Me, or Reading with Rachel, or other things that aren't coming to mind, there are still, even if it's not necessarily all in the same place, there are aspects of this that you're describing, there are aspects that you are getting in drips and drops, at least from other things, besides Commonplace. And I mean, none of this has to be permanent.
RACHEL ZUCKER: I mean, I don’t know. Well well, we'll see. We'll see. I, you know, that's, that's like, you know, back to the uncertainty. I mean, I, I feel like one thing after… I'm having to let go of one thing after another, after another, after another, and I just feel like I've, I'm gonna just have nothing left, you know. That may or may not be what happens. And I also feel like it's possible that my relationship to exposure, to self-exposure, is changing. Like I have, it's feeling less good to me, even though the audience is important to me, something about like, even my birthday Zoom party felt like too much exposure, and those were people I invited who are my friends, so it's possible I won't ever go back, and that's, you know, that's, that's life.
MIKE SAKASEGAWA: That’s, you know, you're not, you're never going to be the same person you were. That is life. But I'll just tell you, and I'll tell you too, that, and this is, you know, maybe not something that we've ever directly talked about, but it's always been part of the subtext in the messages and in the episodes, this time in your life is going to end. And I don't know exactly how it's going to end. And neither do you. You know, we have the statistics, but we don't know. And the not knowing is a big part of the difficulty of it. But this part of your life is going to end one way or another. And when, when it does end, when you come out the other side of it, you're gonna be a different person. And that's another thing that you don't know what, what that's gonna look like. And of course that's gonna have a discomfort to it as well. And some, and it's scary.
But if there's anything I know about life, it is that all of these things are temporary. Ultimately. And maybe, maybe when, when things change again for you, maybe when you, when this time of your life is over, maybe you will pick some things back up that you had to let go. And maybe you won't. But things will be different. And that's something that you can, we can pretty much guarantee. You know? My, you know this, I already told you this, my grandmother died three days ago.
RACHEL ZUCKER: Yeah.
MIKE SAKASEGAWA: Less than 72 hours ago I was, I was sitting next to her body.
RACHEL ZUCKER: Wow.
MIKE SAKASEGAWA: And, you know, I'm sad about it, but my grandmother and I weren't, she was, she was always too shy to talk to me mostly [laughs]. But, you know, I'm glad that I was able to be there for my mom and her sisters. My mom's older sister has been the primary caretaker of my grandmother for seven years. She moved into my grandmother's house seven years ago because my grandmother's dementia made it to the point where she could not take care of herself. And over the past seven years, she has been in continual decline.
This is not the same situation that you are in with Abram, but there are some similarities. It's different in a lot of ways, not least because when you're talking about a woman who seven years ago was 91 years old, your expectations for these things are, you know what's gonna come, there isn't ambiguity about it. But my aunt, you know, has been living with my grandmother for seven years now. My aunt, who is 72 now, she was 65 when she started, has basically been a full time hospice worker with my grandmother for seven years.
My mother has come out every, you know, when she can, and she'll spend a few months there to give my aunt a break, but then she has to go home eventually. And all of us have agreed that my aunt, you know, I've talked with my younger aunt, I've talked with my mom, I've talked with my brother, and we all, our biggest concern, now that my grandmother has finally passed, is for my, my, my older aunt, my mom's older sister, because she's been the one in the thick of it for the longest, and she's also the one who is definitely going to take it the hardest, but she's also the one who is the least able to talk about these things.
[1:25:09]
She probably wouldn't appreciate me talking about this in public, but it is what it is. And she's never going to listen to this. Her life is not going to look the same now. It's already not looking the same in a really, in a really major way because, you know, yesterday morning when we left, when my kids and I left my hometown, they were already starting to clean out my grandma's house, like it, there was already stuff in bubble wrap, and I will probably never go back to that house again, because by the next time I'm available to go up there, it, you know, it'll be empty. There'll be no reason to go there.
I think that what my aunt's life is going to look like now, in the aftermath of this, there's going to be things about it that go back to the way that she was living when she was in her mid-sixties. There are going to be things about it where, you know, she can go back to her own house full time. She can, you know, she is an artist. She can, she can go back to, you know, painting plates and making creative sculptures and visual art and stuff like that. There are things that she can do like that, but there's also things that are never, ever going to be the same for her. Not least because she is, it is seven years later, you know?
And I understand that that's going to be a challenge for her, but at least for a while, her life is going to continue, you know, I mean, none of us get to go on forever, but she's got time left, and she is going to have to figure out what that looks like for her. And I'm hopeful that she will get to a place where the remainder of her life gets to be something fulfilling and gets to be what she wants it to be.
All of which is sort of, an oblique, I guess, and sort of roundabout way of saying, when you come out the other side of this, your life is going to be different. And, of course, I'm, because I'm your friend and I love you, I'm concerned for what that will be like, and I'm concerned for all of the time in between, and everything that you're going to go through, but I'm also hopeful, and even a little bit confident, that you will eventually get back to a place where, or not back to a place, but you will get to a place where things will be different in a positive way.
RACHEL ZUCKER: Yeah. What was your grandmother's name?
MIKE SAKASEGAWA: Her name was Missy. Her name was Misuzu Hamanaka Ellis. And yeah, she died at 98 years old. She was born in Japan. She's the only relative I ever knew in a close way who is actually from Japan. And she died in Salinas, California, where she had lived for a very long time. My grandfather died in 1998, so she had been on her own for a long time. I hope that she had a good life. I know that the last few years weren't much of a life but, I'm glad that I got to know her at least as well as I did.
RACHEL ZUCKER: It's really, it's really something, this, this life, you know, like just trying to stay open to connections and love and other people and other people's suffering, you know, and live in reality, which includes overwhelming uncertainty, other than, you know, that we're all going to die, which is like the very certain everything else is, you know, how and when and all that stuff. It's just, it's really, I find myself often jealous of the people who are so compartmentalized or able to, like, dissociate or, or, or, or, or something, you know, because I keep, you know, I'm just in this state right now where I find even the story of your aunt, you know, and her, what the last few years of her life have been like and what the next few years could be like, you know, so moving and poignant.
[1:30:03]
But it's almost like, I just, it almost feels like I can't be open to caring, you know, because it's just, it's so beautiful and painful. But I also know that I can't care without caring [laughs], you know, I feel like I've said stuff like this to you before, but it's really, yeah, it's, this is, this is really hard.
MIKE SAKASEGAWA: It’s ok. It is really hard.
RACHEL ZUCKER: Yeah.
MIKE SAKASEGAWA: And it's okay for it to be hard. Yeah. It's okay. You're doing okay. I know you're not.
RACHEL ZUCKER: But to just even think about what a person who lived to 98 has been through, you know, it's really, it's really something.
MIKE SAKASEGAWA: Maybe someday I'll tell you what I, what I know about my grandma's story. It's not a lot, but it's, I've often thought that my grandparents, that all of my grandparents’ stories actually would make a, an interesting historical novel. I'm not ever going to write it, but -
RACHEL ZUCKER: Maybe one of your kids will.
MIKE SAKASEGAWA: Maybe.
RACHEL ZUCKER: Okay. Well, I'm planning to use this, to run this on Commonplace as a way of explaining why I'm going on hiatus, and I think we did that, so, and I wasn't able to do it alone, and I'm really grateful to have you and this and this podcast to be able to do that.
MIKE SAKASEGAWA: Well, I'm grateful to have you as well, and this podcast. So, likewise.
RACHEL ZUCKER: Okay.
MIKE SAKASEGAWA: Okay.
[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.