Episode 20: Book Report: “Between Two Kingdoms”

Written By Kayla Crum

Once a season, we like to recommend a book to our listeners. This time, that book is “Between Two Kingdoms” by Suleika Jaouad. In writing a memoir about having cancer throughout your twenties, Suleika is equally talented at documenting the delightful and the devastating. She chronicles everything from the physical pain to relational issues to finding a path forward. If reading isn’t your thing, Suleika can be found on Instagram and also has a Ted Talk (links below in show notes).

SHOW NOTES

Support us on Patreon!

Sources and Further Reading:

TRANSCRIPT

 Kayla 0:09

 You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.

 Ella 0:15

 And I'm Ella Beckett, social worker and cancer survivor.

 Kayla 0:20

 We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support. 

Ella 0:28

Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.  

—-------------------

Kayla 0:42

 Hello and welcome back to the My Sister's Cancer podcast. I'm one of your hosts, Kayla Crum, and here, as always, with my sister, Ella Beckett. Today we're doing our quarterly book report for you. And before that scares you away, you don't have to go read it if you don't want to. We're not going to give you homework. But a lot of these cancer memoirs are great food for thought. And if you are looking for something in this arena, we like to provide some good recommendations. So before we jump in, I did want to remind everybody that we have a Patreon. You can search “My Sister's Cancer” and Patreon is spelled P-A-T-R-E-O-N. You can go to patreon.com or download the app on your phone and for $5 a month you can support the work we're doing here and be part of a private online community. So it's small right now, but we really appreciate the people that are contributing to the work we're doing here in the young adult cancer space. And just wanted to remind everyone that that is an option. So today the book we're covering is called “Between Two Kingdoms” by Suleika Jaouad. This came out in 2021, so it's relatively new. I feel like I saw it kind of all over the place, so you may have heard of it. It has a very cool yellow VW bus-looking thing on the front and she's sitting on the roof with her dog. So it's a very attention-grabbing cover. Suleika is well known in the young adult cancer world for running something called “Life Interrupted” and also “The Isolation Journals.” So we'll link up to all of her work in our show notes. But she's been a voice chronicling the young adult cancer experience for years now, first with The New York Times, actually, through her “Life Interrupted” column, and then later on Instagram through “The Isolation Journals” and her own page. She's a prolific writer, a beautiful writer who's gone through several bouts with leukemia and had, I think, more than one transplant at this point. She got diagnosed for the first time shortly after graduating from Princeton. She wanted to become a journalist, specifically like a war reporter overseas. And she had her first job in Paris - I think she was in, like, a law office. It wasn't exactly what she wanted to do yet but, you know, first job out of college - and became very sick and ended up coming back to the US and sort of starting her cancer diagnosis over here. Ella was a little bit younger at the beginning of her college journey, whereas Suleika was at the end, but close enough where this memoir really resonated with us reading it, and I'm sure with a lot of our listeners, it will as well. So I read this back in March of this year, 2023. And I'm one of those people who writes down a few notes about every book I read, so I'm just going to read what I wrote back then, my first reactions, and then kind of go from there. So I quote: “Wow. At first I was angry, which gave me pause, perhaps because she got a book deal for her young adult cancer story or because she made some questionable life choices. But after pushing past it, I loved it. Her writing is amazing. It's gutting. Raw. Honest about the in-betweenness. Not exactly a road trip memoir as it first appears. Better.” I definitely thought based on the title and the cover, that this book was primarily about her 15,000 mile road trip to meet people that she knew online through her writing, which is something she did after she was in remission from one of her experiences with leukemia. But that's really the last quarter of the book. So the reason we're bringing this book to you in our treatment season of the podcast is because most of the book is actually more of a treatment memoir. The first three quarters are really the nitty gritty experience of diagnosis and then treatment. Ella, why don't you just start us off talking a little bit about what the title means, “Between Two Kingdoms,” and sort of the ongoing nature of that? 

Ella 04:56

I mean, I think this title was so well chosen. I'm really not well informed on, like, the process of choosing a title of a book. I'm actually pretty intrigued as to how they go about doing that. But I just think there was so much - I'm assuming there was a lot of intention behind this title because really, the title “Between Two Kingdoms” just encapsulates what the whole book is about. I would say, like, the overarching theme is that the two kingdoms that she's referring to are the kingdom of the well and the kingdom of the sick. And she talks at one point about how the border between the two is very fluid. And a lot of times we're constantly traveling back and forth between those two realms, spending our life also sometimes in the in-between. And so - I'm going to just directly quote her. She says, “As we live longer and longer, the vast majority of us will travel back and forth across these realms, spending much of our lives somewhere in between. These are the terms of our existence. The idea of striving for some beautiful, perfect state of wellness - it mires us in eternal dissatisfaction, a goal forever out of our reach. To be well now is to learn to accept whatever body and mind I currently have.” And I just think that that so beautifully captures really what her whole book is speaking to and throughout her story and experience. I think it's just a picture of these two kingdoms and kind of her personal journey between them. But really the greater narrative that we're all kind of journeying between them at different points in our life. Is that kind of your interpretation of the title, Kayla? 

Kayla 6:49

Yes, and I think she actually credits somebody else with the concept of the kingdom of the sick and the kingdom of the well. We'll put that in the show notes, too. She borrowed that language from a different author, I think. But I really liked how she leaned into the betweenness of it, because I think the original author was more talking about the two separate kingdoms, whereas Suleika really explores how all of us live in between them, sort of in the no man's land, and especially people who have gone through something like cancer. I think one of the things I'm trying to make clear through doing this podcast is just how gray cancer is, and how there's a period of treatment, but it can be extended over and over again based on how your blood counts react. Or you can relapse or there's maintenance treatment after you're like, technically declared in remission, but they keep giving you chemo. So there's just all kinds of different ways that people are really not out of the woods, so to speak, and in this in-between land. So on the surface, like, I thought this was going to be a survivorship memoir, but it really is a treatment memoir. And I love how she kind of talks about how once you've had cancer, you almost live in this between space permanently. I think what jumped out at me was how she talked about learning to live with the uncertainty and the precarity of health. And I think, like what you mentioned, is we all, to an extent, do have this. It's just those of you who've gone through cancer are forced to think about it usually sooner and more. But she says this quote on page 264: “To learn to swim in the ocean of not knowing. This is my constant work.” And that just like was my favorite quote in the entire book, because that's so hard! And especially as a nurse and your sister, for a long time, I carried too much control. I needed to have control, which was always a facade, but… intimate knowledge of all of your results and counts and the statistics of survival, and I just think that learning to live in that unknowing is key to… having a healthy life both mentally and physically as you try to move forward with cancer sort of as this permanent partner in your life. She also has this other quote that says, “And like so many former patients, he lives with a constant hum of vigilance, ears pricked for bad news, eyes ever on alert for signs that disease has reinfiltrated the plot.” So first of all, you can tell she's just a stunning writer by these quotes we've read to you. She not only has a compelling story, but she writes it so well and viscerally and beautifully. But yeah, I felt like I lived for years with that hum of vigilance, as she calls it, waiting for you to relapse again, especially after the first time you relapsed or the only time you relapsed. Then I just felt like, okay, well, this is never going away. I'm always going to have to be on alert for the next bad thing to happen. We're almost five years - we're more than five years out from your transplant, and I finally feel like I've let go of that a little bit in the last year. But that's… that's a real thing for people to really not feel like they ever leave that sense of vigilance. I think another key thing that may be obvious to say, but that makes this memoir unique and compelling, is her age, which is part of why we're featuring it. She's maybe the closest in age to you that I can think of from sort of the famous cancer people or the cancer memoirs that I've heard of. There's a lot more 30s and 40s, which some would call young adult cancer out there. Like we featured Kate Bowler before, who was in her 30s when she got colon cancer. But Suleika, this was truly her 20s right after college. And so I just wondered if that was ever hard for you to read. Did it hit too close to home, or did you just feel so seen reading it? Like, what was your experience reading her very raw description of her journey? 

Ella 11:10

I think I've talked about this maybe on the other episode when we first - when we did our first book report, but I had talked about how I've kind of run in the opposite direction of a lot of cancer narratives, whether it's like movies or books or whatever. Not even necessarily because I'm fearful that it's going to be triggering of my own experience, but a lot of times I just don't feel like - especially movies and shows, like, I just don't feel like they do cancer justice, which is a weird thing to say, but I just feel like sometimes it doesn't fully capture the journey. But, yeah. For some reason I feel like I've avoided reading cancer memoirs because I think, yeah, maybe that fear of it being a little bit difficult to stomach just because I understand so deeply, like, my personal experience and how it, you know, relates. But I think because I read this now and I'm so far out and I've had so much time to like, internally process, externally process what I've been through and like, work through some of that trauma. I, like you said, I felt seen. Like it felt… in many ways I was like, oh, Suleika is like a cancer friend of mine, right? Like we've been down very similar dark walks and we had a very - I don't want to say a similar path. I mean, nobody's path is like, extremely similar, but a lot of what she wrote just like, uh, hit me in the gut, but, like, not in a bad way. Like, I just felt that so deeply because I could put myself back in some of those moments. Like, especially when she was describing, like, I think you used the word visceral earlier, and that's really accurate, just like the visceral details of treatment and like how much it pretty much just wrecks your body and like, destroys your strength and your ability to function as like a normal human. The way that she wrote it was so honest. And so I don't even - I don't even have the words. Like, I just - I think it's such an important glimpse into what cancer really is like for someone. So to answer your question, I definitely felt seen and I felt like I could relate on many levels.

 Kayla 13:34

 Yeah. You saying that your journey was somewhat similar and reminded me of this quote I highlighted on page 338. She says, “It's a tricky balance, attempting to find resonance in someone's story without reducing your suffering to sameness.” And that's something that I think I've tried to articulate and never said it quite as precisely and beautifully as she does in that sentence. In her context, she's actually talking about visiting a prison inmate who she was sort of pen pals with and how in a weird way, they had some similar feelings and experiences. Because when you are undergoing a transplant and on isolation, you kind of feel trapped in a way a prisoner feels trapped. But of course, in this sentence, she's also saying it's so hard to like, make comparisons without reducing each other's suffering, right? So I like that she just acknowledges that. That leaves, I think, the reader the ability to make comparisons with their own situation with her and not feel like, well, my story doesn't compare to her because of X, Y, and Z, but rather to just acknowledge it’s messy and like part of it resonated and that can just be what it is. Before we move on from the age piece of this memoir - which it's hard to move on from at all because I think that the whole character of the memoir centers around her being in her 20s - I recently had the opportunity to go to a writing workshop sponsored by Elephants and Tea, which we'll link to in the show notes. We may have mentioned them before. They are a young adult cancer foundation started by the sibling of a cancer patient who had a young adult experience - several experiences with cancer. And they just sponsor a lot of very cool writing-focused, story-focused events for caregivers and cancer patients. So I was at a writing workshop with them, and someone shared - and I wrote it down as a quote: “I don't know what changed due to cancer and what changed from simply growing up.” And that just really hit me. Because when cancer enters your life in the college era or 20s, you're really at that time of life where you're trying to figure out who you are as a grown up and what your life is going to look like, who you are apart from your parents and where you came from in your hometown and all of these things. And so for both Ella and Suleika and this girl at the workshop, and so many of the young adult cancer patients, even when you get through cancer, so to speak, which we know you never really are done, you're not even sure who you are. I think that there's this expectation you're going to get “back to normal.” But you don't even know who normal grown-up you is, because you've never been an adult without cancer. Or you had maybe, like, a taste of adulthood without cancer. But come on, it takes years in your 20s to really figure out your adult self. I think they say your brain's not even done forming until you're 25 or 26. 

Ella 16:40

Correct. 

Kayla 16:41

That idea that it's a struggle to not know who you are in the first place and then to not know, am I this way because of cancer or because I grew up? And the answer is probably somewhere in between. That just really resonated with me. And I feel like Suleika covered that complexity in her book, kind of having to navigate “Who am I now?” and putting down the idea that you're going to return to any sort of self you had before.

Ella 17:10

I think that's a super important point and I think kind of going off of that, another complexity that she, I thought, explored beautifully is the fact that it really robs you of those years and that time, right? Like for her, I believe it was over like a four year period that she was receiving treatment. I mean, leukemia is a long haul of treatment. And in many ways, she just speaks to how those four years she'll never get back and like, in many ways, she was kind of robbed of the normal experience of those four years. And in a very similar way to myself, I think it's this really exciting cusp of, like you were saying, adulthood for the first time, life on your own, all these things that you've dreamed about and hoped for, and then you're just like thrust into this world that is just like so foreign and becomes like your full identity. I just think she made the point that in many ways cancer patients are just robbed of that time in your linear life narrative, I guess you could say.

Kayla 18:22

 Yeah. And I think part of growing up for many people is dating and finding a partner, and I really appreciated that Suleika documented in blistering detail the ups and downs of her relationship with her boyfriend. She had a long-term boyfriend at the time of diagnosis. I think they actually lived together in Paris, if I'm remembering correctly. They had sort of just taken that step of moving in together, and he returned with her to the United States and was one of her primary caregivers other than her parents for years of her original diagnosis. But through the book, she documents their unraveling and all of the tension and resentment that builds up in these kind of excruciating scenarios. And I just really respect the fact that she was honest about that, because I think that cancer is so hard on relationships, and for a lot of very good reasons - privacy, right? People don't always talk about that. But she changed his name and just was very honest about their ups and downs. And she's married to somebody else now, which I think is a common thing. But I think a lot of young adult cancer patients, if they're in a relationship when it starts, really struggle with that, because like we've been saying, you're so young, you're trying to figure out life and then to have this crisis thrown at you. I mean, there's people in their 30s, 40s, 50s, etcetera, who probably struggle with their spouse of 20 years when this happens. And so to put that on a young beginning relationship is really difficult. And I know we've never really touched on this for you yet, Ella, but you had a similar experience where you were in a boyfriend-girlfriend relationship at diagnosis, and now you're married to someone else. So I wondered if you'd be willing to share anything about that experience and how Suleika’s book related to that for you or if that was sort of healing to read at all?

Ella 20:32

 Yeah. I mean, I think I went into her book thinking that I would resonate most with - obviously, like, the treatment and the recovery and survivorship and like, all the things - like very cancer-specific things. But I think one of the things that I resonated most with was the trajectory of her relationship with her boyfriend and just the hard truth about that strain that cancer just puts on relationships. Like I think, you just said it so beautifully but like, especially when you're, you know, 18 years old, it's just like, you're dealt this impossibly hard hand and it's so hard to figure it out as a couple and I think, yes, like you said, I was dating someone at the time. I think we'd been together for like a year and a half or something. So it was like a longer term relationship. I just think there's so many layers to that because in many ways there's like this sense of obligation, right? Like, you can't really break up with someone who has cancer. Like that just feels like the ultimate, like, terrible thing to do. I mean, I feel like that's kind of unspoken. But she kind of calls that out. Like she talks about how like, there's just this weird sense of like, obligation. And then there's also the people that are like, “Oh, you're just like, so good for like, sticking it out and like, supporting her and blah, blah, blah.” And I just think, for my boyfriend at the time, like, I just think this was so hard on him too. And just the pressure I think that he was under. I mean, we had just moved into college two days before receiving this diagnosis. Like, I just can't even imagine really what he was thinking and feeling in that moment either. And like, how the heck you're supposed to handle that as two 18-year-old people. So. I definitely just resonated a lot with the difficulties that she mentioned. And as time goes on, I mean, you know, our relationship did really suffer and we gave it a valiant effort, you know, to try and make things work. And at the end of the day, like, I decided to walk away from that relationship. And I think one thing that was really hard for me was that I had this, like, very deep fear that I would never find someone who would understand what I had been through because, you know, this person that I was dating at the time was physically with me through it and like, saw that side of me and was there in those difficult times. And I was just so scared that, like, I would never find someone that could understand what I had been through. So walking away from that relationship, even though it was really broken and not the healthiest situation for both of us, it was really difficult for me. But I'm really glad that I did because I think we're both better off and in happier relationships. I met someone in a cancer support group who, although he wasn't there for me physically during that time and wasn't, you know - doesn't know all of the gory details of every treatment and every twist and turn to my story necessarily, my husband is able to support me because he too is a cancer survivor. So to some extent he “gets it.” And I'm like, that - that fear piece just kind of fell away when I met him and when he saw me for who I really was. And that includes the whole cancer piece of my story, too.

Kayla 24:25

 I think that at the time, as your older sister, I was a little bit protective and probably had too high of standards for your 18-year-old boyfriend. I mean, right now I know some 18-year-old boys and I just can't believe what that 18-year-old boy, you know, those - those many years ago, was tasked with handling. Because I picture the 18-year-old boys I know in my life and I just can't even fathom them trying to handle that. 

Ella 24:58

Yeah. 

Kayla 24:59

Boy is the right word. I feel like in that context, they're really not even men yet. 

Ella 25:02

Correct.

Kayla 25:05

Now, in retrospect, I have a lot more empathy and kindness in my heart for him. I mean actually, we all still are semi in-touch and like, wish him well and his whole family and everything. They're actually a very delightful family. But that's a part of young adult cancer that it's hard to be candid about because of the messiness of relationships and respecting each other's privacy. So I do appreciate you sharing that and I really appreciate how nitty gritty Suleika gets by changing his name and protecting his privacy. But like, I'm sure, right, her personal circle knows who he was. So that was - that cost her something to be so open about how difficult it was for them. Yeah, there's this part on page 175 that really speaks to what you were saying about the obligation piece. She says, “More than ever, I wanted to walk away from the changing treatment protocols and timelines, the exhaustion and the humiliation of having to ask for constant help. But as a sick person, I was bound to the mess of it all, to this wretched marrow of mine. As a caregiver, Will had been there out of love and also, perhaps, from a sense of obligation. The continuous refrains of ‘You’re a saint for sticking by her - a good man, a model partner,” surely did not lessen the pressure he must have felt. But being here, enduring this with me, was a choice. The truth was that he could leave and he would.” So that's a little different than your situation because he ultimately leaves her. But yeah, she just really fleshes out those tricky ties in the sense of obligation and resentment. She actually is now married to Jon Batiste, the famous musician. Nominated for all the Grammys, all the things, which is just kind of a fun fact.

 Ella 26:58

 We love that for her.

 

Kayla 26:59

 We love that for her. So, yeah, she did not end up marrying a cancer survivor like yourself. And she talks a little bit about forming her relationship with Jon in the end of the book and how she had a hard time letting him in, almost, because she sees herself as a liability. Like a ticking time bomb that's going to hurt him. And he kind of had to really be like, I can give you the space you need, but you have to stop completely shutting me out. Like, I'm choosing to enter into this relationship with you. And I know your health is precarious. So, I like how she even explored that in the book, like the beginning of a new relationship. Just very vulnerable with it all. 

Ella 27:36

I think another thing that I want to draw out that she touched on so poignantly was how - when you're so immersed in cancer treatment, it's like - this was true for me at least. It really becomes, I mean, it's your world, right? It's like, what you're spending your days doing is you're going to treatment or you're in the hospital receiving treatment. And I mean, in many ways it becomes your identity, too, because it's like, this is who I am, this is what I'm doing. Like, I am currently a cancer patient. After like a bit of time, you almost find, like, comfort and purpose in that. And that sounds kind of weird to say out loud, but it's like once you get in the routine of like, these are the days I go to treatment and then I have like these days off to like, recover and whatever. It's like you find a lot of comfort and whatever in the routine of it. And then when you're like, getting close to the end of treatment and when you wrap up treatment, you're so thrown off, like you should be so excited that you're like, wrapping up this really challenging chapter. But it's like you don't know what the heck you're supposed to do with yourself. And I think the way that I kind of see it is that treatment feels so active. You're actively - I don't want to use the fighting language, but you're actively working against the cancer and like, these drugs are - I shouldn't say you because, again, it puts the onus on the person. But these drugs are actively working against the cancer to eliminate it from your body. But then when you're finishing treatment, it's like, you feel so passive, like you almost have to, like, take your hands off the steering wheel and be like, okay, now what? Like, now I'm just supposed to hang out and, like, try to recover - whatever that means. Like, she just spoke to that so beautifully, to like, the complexity of, okay, this is what I'm doing. And like it in some ways feels good because it feels like you're actively working against cancer. And then as you move into that survivorship, it's like, wait, what? Now what? What am I supposed to do now? And also, like, I'm just supposed to sit back and like, wait to see if it comes back? Like, it just feels so counterintuitive. 

Kayla 30:02

Yes. I think the word you're dancing around is purpose. I almost feel like treating cancer… you have a clear goal and your whole life aligns around this purpose of, quote, beating cancer if you want to use that language. 

Ella 30:18

Yeah.

Kayla 30:19

 And then all of a sudden you did beat it or as good as you're going to get. And then crickets, right? And everyone's like, yay, you did it. But you feel like, adrift. Yeah, like you said, like suddenly, like you have less control. You're just kind of waiting and like, maybe it'll come back of its own accord and we don't really know.

Ella 30:41

 I actually found a quote that really speaks to what we've just been talking about on page 211. She says, “After three and a half years, I am officially done with cancer - more than four years, if you start with the itch. I thought I'd feel victorious when I reached this moment - I thought I'd want to celebrate. But instead, it feels like the beginning of a new kind of reckoning. I've spent the past fifteen hundred days working tirelessly toward a single goal - survival. And now that I've survived, I'm realizing I don't know how to live.”

Kayla 31:14

 Hmm. Yeah, that really says it right there. So obviously, we have a lot of respect for Suleika and really recommend you read her book, but if books aren’t your thing, she has a Ted Talk, she has an Instagram account. She's been featured on CBS Sunday Morning. So we'll link to a bunch of different ways you can hear from Suleika. Her words are always powerful, no matter the format. Next week it's Halloween, and so we thought we would touch on health care and horror. I'm sure we're all familiar with the sexy nurse costumes, the bloody doctor costumes. Some of us are quite afraid of even entering hospitals. There's something called white coat syndrome where you get very worked up and have a high blood pressure around doctors. There's a lot of fear around health care and medicine, and sometimes the media machine doesn't help when they lean into those tropes with horror movies and like, dirty surgical rooms and things like that. So we're going to sort of discuss that whole deal next week. That episode, I'm sure, will have a very different tone than this week's, but that's what we like to do here, is kind of cover the scope of all the ways cancer touches life. So, a special Halloween episode next week, Health Care and Horror. And until then, we hope you have the best week available to you.

Kayla Crum
Previous

Episode 21: Health Care and Horror
Next

Episode 19: Have You Tried Essential Oils?