A Life Interrupted with Suleika Jaouad - Transcript
This is a transcript of a “Terrible, Thanks for Asking” episode entitled, “A Life Interrupted with Suleika Jaouad.” The text may not be in its final form and may be updated or revised in the future for accuracy.
Listen to the episode here.
I’m Nora McInerny, and this is a special Reading Club episode of TTFA, where we have conversations with authors whose work fits into the category of “good work about terrible things” — which is, frankly, a genre I’d like to see more booksellers embracing. When I walk into a bookstore, I’m not looking for mystery or history -- those rhyme! I am looking for sad. I’m looking for “will destroy you emotionally.” So just a little feedback from a reader here.
The good and the terrible exist hand in hand, side by side, all mixed up together. We don’t know this, of course, until we live it: until that thin line between what was and what is disappears entirely.
For Suleika Jaouad, that happened when she was 22 years old, living a version of the life she had dreamed of. Not EXACTLY the life she had dreamed of, which was to be a war correspondent, but a version of adulthood that didn’t involve living in her child bedroom or making drinks at a coffee shop. There’s nothing wrong with either of those things. I did the former two or three times after graduating. I never made it to the latter because I never made the cut to be a barista.
Suleika was deeply in love, living in Paris with a job and her own apartment. She also had an unbearable itch, and I mean a real, physical one, a burning under her skin that she described as “like a thousand invisible mosquito bites.”
Suleika had been a young woman just dipping her toes into adulthood, standing on the precipice of what was possible. And then -- swiftly and remorselessly -- she was a cancer patient.
That burning was a rare leukemia with a five-year survival rate between 25 and 30 percent.
Paris was over, and she was flown back to the U.S. to attempt to save her life. The precipice she was standing on wasn’t her surveying all that was possible, but imagining what was no longer possible, seeing all that could be lost … her life.
A major spoiler for her book and for this episode is that Suleika lives. She survives cancer -- the stated goal for every patient -- but then what?
Every time I have had an intense and non-life threatening illness: an ear infection, food poisoning, the flu, rolling my ankle in a pair of Crocs, I am intensely aware of how good I had it. I swear that once I’m able to eat again I will never take for granted any meal set in front of me. I promise that once the dagger is out of my ear, I will appreciate any sound I hear. When I can stand on that foot again I will tenderly appreciate all of my joints. When I wake up feeling good again, that is true. For about five minutes. Now that I’ve shaken off that ailment -- life goes on. I’ve concluded that brief visit to Sicktown, USA and now I’m back to my old tricks … eating buttered popcorn for dinner, wearing Crocs without the safety strap on …
But that is not how profound and life-threatening illness works. When sickness has become the center of your life, when the goalposts move from “get better” to “live,” you do not simply wake up better and get on with it.
You live, as the title of her book states, Between Two Kingdoms … not as well as your peers whose fertility was not stolen by the life-saving cancer treatment, and not as sick as the peers who died of their own cancers. You are not who you were, or who you might have been. And when the legions of helpers and professionals retreat … there is just … you. The survivor. Who has to somehow, some way, learn to live again.
The book is so affecting, physically and emotionally. And as a person who was adjacent to cancer but has not (knock on wood) had it, I found it to be one of the most illuminating books I’ve ever read. I have a feeling that you will feel the same.
Here’s my conversation with the wonderful Suleika Jaouad.
Nora: So we're talking about books, we're talking about your book. Your book is, and I really hate to use this word, unless we are talking about a trip that we are both taking by foot that is many hundreds of miles, but it is two journeys, two parallel journeys. And one of them was literal, this epic cross-country road trip to meet a bunch of strangers who wrote to you during your cancer treatment. And the other one is emotional, right? So tell me about that emotional journey that you take when you learn your cancer is in remission and you have to figure out a way to get back to whatever life is now.
Suleika: Yeah. So the title of my book “Between Two Kingdoms” is a reference to a line from the brilliant Susan Sontag, who describes how we all have dual citizenship in the kingdom of the sick and in the kingdom of the well. And my book is separated into two parts. One is about that journey through the kingdom of the sick, which weirdly very much felt like an actual trip. I don't know what your experience was like with Aaron, but after my diagnosis, pretty shortly thereafter, I packed a physical, literal suitcase to be admitted to the hospital. I was given a patient ID number in the place of my name and everything changed. The person looking back at me in the mirror changed. My relationship to the world outside my hospital room windows to my friends, to my family, to my boyfriend at the time. But more than anything, I think my relationship to the self dramatically changed. And like a lot of people who faced a life-threatening illness or cancer, more specifically, as was the case for me, you know, the goal obviously is to have as short a sojourn as possible in the kingdom of the sick, hopefully not to have to get too comfortable and not to have to unpack your bags. But that's very much what happened for me. I spent about four years in treatment and not by choice, but by necessity. I had to accept that as my reality. I had to get comfortable. I had to make friends with fellow patients. And the goal that whole time was hopefully someday emerging on the other end as cured. And for a lot of reasons, I didn't give much thought to what would happen if I did end up among the lucky ones who reached that kind of goal of being cured. Part of it was that I was — am I allowed to swear?
Nora: Oh, yeah. Yeah.
Suleika: I was really fucking sick. You know, none of the standard treatments worked for me. I was in clinical trials. I had a bone marrow transplant. And there was this feeling of the goalposts constantly moving. And so I built a home for myself in the kingdom of the sick. I started my first job, my career, in the kingdom of the sick. And when I did reach that point of being cured almost four years later, it was nothing like I expected it would be like. I expected to feel grateful and excited and to organically and quickly kind of fall back into the rhythms of living and fold back into that kingdom of the well. But that, as much as I wanted it to be, wasn't my reality. In a weird way, the hardest part of my cancer experience began once the cancer was gone, because I was carrying the wreckage and the trauma of those four years of illness and my body. I was, you know, for the first time really taking stock of the collateral damage on my relationships and on my personal life. And I don't think I was prepared for that kind of wilderness of survivorship. And I didn't have a medical team. I didn't have the cavalry running after me in the same way it had when I was acutely ill. And so that next part of the journey, which became another very literal journey for me, was a profoundly isolating one. I didn't even know how to talk about it. You know, so many of my friends, my fellow cancer comrades, had died. So who was I to talk about the hardship of surviving illness?
Suleika: You know, I'm of the opinion that the beloveds of a sick person or caregivers are in fact, citizens, in that same kind of feeling of in betweenness when you come out on the other side, whether your person has lived and is dealing with that wreckage or whether they've died is very similar. And I know that is true for my parents. I know it's true for my brother, who was my bone marrow donor. And that's another aspect of survivorship that we don't talk about enough. It's not just from the person who's sick has their life upended, but the way that those aftershocks ripple across an entire family unit and sometimes the whole community.
Nora: Yeah, a whole community. Anybody who loves a sick person or is adjacent to a sick person, I do believe everybody wants to show up and do the right thing. But we are just so illiterate in the language of suffering, especially in America and probably other parts of the West, too. But we really want to be fixers, and we really want to be like the person who is going to make it better by doing the right thing or saying the right thing. And you were sick for four years and these are four extremely formative years for you too. At this point that is, you know, what twenty five percent? Not twenty. I can't do. Jeez Louise, I really can't do math. It's like twenty percent of your entire life, right, that you've spent in a hospital. I literally, I can't do, I'm gonna have to, I want to pull up the calculator app. It's a significant percentage. It's a significant percentage of your life is spent in a hospital and truly focused not on the things that your peers are focusing on, which is building and embracing like the glory of life, but literal survival.
Suleika: Yeah, I mean, I think we're always all in a seeking place. But when you're in your early 20s, there are so many questions that haven't been answered. And your job, in a sense, when you're at that age, is to figure out answers to them. And so I've thought a lot about how age informs our experience of illness and trauma. And I think at that particular age, you know, as much as I wanted to think I was an adult at 22, I was like, a barely formed human. You know, I didn't have a family of my own yet. I had career aspirations, but I didn't have a career. I didn't have a baseline to return to when I emerged from that very long, very grueling season of illness. And I think, you know, one of the things I learned the hard way in coming out of my leukemia treatment was that I couldn't return to the person I'd been. There really was this fracture in my life, my life before and after, and I wasn't a cancer patient anymore, but in the wake of all that, I really had no idea who I was. And at 27, you know, with like, a quarter inch of hair, I still had a port in my chest that my doctors were waiting to remove until I was further out of the woods. I really, you know, viscerally remember looking around me at my peers and being like, what does a normal, healthy, happy twenty seven year old look like and play acting and trying to become that which, of course was not a successful experiment.
Nora: What did that experiment look like?
Suleika: I went through a breakup right before the end of treatment, which was really difficult, and I found not uncommon, you know, the stresses of being sick for so long, coupled with being in a very new relationship with just untenably hard. And so when I emerged from treatment, I didn't just not know who I was. But, you know, I’d become so used to being dependent on a caregiver, which is very strange for me. I'm not someone who easily asks for help, but suddenly I was weirdly comfortable in a hospital, but terrified of the outside world. I was terrified of doing anything by myself. I didn't feel safe in my body. And so those first couple of months I because I wasn't ready to deal with all that and to reckon with what I'd been through, I immediately jumped into a new relationship. I, you know, would try to go out dancing with my friends and then pay for it with like three days in bed because I was so physically exhausted. I kept you know, I've written this column called “Life Interrupted” in The New York Times about my illness experience. And I kept feeling like I need to stop writing about illness. I need to write about something new. So I would go to a coffee shop every day and try to write. And I couldn't think of anything because I was so in it still. And about six months into that is when the kind of adrenaline of trying this new phase of life wore off. And where I found myself in a really dark place. I was, you know, so lost that each morning I'd wake up, and I'd feel like I could barely breathe. I was still on disability, but I had all these questions about what would happen once, inevitably, I was no longer on disability. For example, how can I hold down a job when I still go to the emergency room on a regular basis? I need to nap for four hours in the middle of the day. How do I date when I still have a port in my chest and I have a high chance of relapse? How do I talk about, you know, the imprints of illness on my body, like infertility, and things that I'm going to live with and manage forever? And that was when the real reckoning began to take place. When I tried to kind of resume a normal life, I tried at all expenses to move on from all that. And you know, came to this understanding that moving on is a myth. You don't get to skip over the hard work of reckoning and grieving and healing. You have to move through the belly of the beast.
We’ll be right back.
Nora: It's the worst part. It's the longest part, right, of everything. It's always like the second act of a play. It's like, okay, can we move on? Like, can we wrap it up? Can we get to a good conclusion? But in the West, I mean, you know, God Bless America that you're, you know, barely not sick and you're already worried about how you will be able to function in society. I will always remember that when we found out Aaron had a brain tumor, the first thing he said was, how will we pay for this?
Suleika: Mm hmm.
Nora: And I remember being like yeah, should I just like, just rip this you know, IV out of your arm and just take you home. Like, I don't know how much it costs to stay in the hospital, but doesn't look cheap. It doesn't look cheap. And we love a quick sort of comeback too, like we just love strength and resilience. And we truly are conditioned to believe that resilience is like a switch that you turn on and that you just bounce back and you're like, oh, my God, you're the old Suleika. Like, what were your dreams? Go chase them. And it's just, it's not that easy. There is not this binary between, you know, sick and and cured, between well and unwell, between the before and the after. There's just such a large gray area. And we don't have enough space for that. I don't know. It's like it's like when you hear it when you hear you say like well, of course, of course you would feel that way. And yet it is such a shock when that feeling and that sort of sense of being descends upon you.
Suleika: Mhm. Absolutely. You know, and I think we project the Hero's Journey arc on people both living with illness, and often the way that story told is the last act is the cure. It's surviving. And you're expected to come back from that experience not only braver and wiser for what you've been through, but stronger. And I realize that on the day that I was discharged from the hospital, I finally finished treatment and I got a slew of text messages congratulating me, telling me I was an inspiration, telling me all kinds of lovely, well-intentioned things. And I got back to my apartment and my discharge from the hospital had coincided with my boyfriend moving out. I had C. Diff which, if you don't know, you don't know. And that's for the best.
Nora: Aaron got that, too when he got out of the hospital. Horrible. And we also didn't know what it was.
Suleika: Life-threatening intestinal infection.
Nora: It can kill you! And we truly thought it was like, silly.
Nora: So dumb.
Suleika: So I get back to my house- to my apartment, and I had, you know, a bag from the hospital that literally said “patient things” on it. And I get back to this empty apartment and I'm 20 pounds lighter than I was when I entered the hospital because of the C. Diff. And my best friend, Melissa, who was also in treatment and who I met in the hospital, had died earlier that month. And I was in such a state of shock and numbness and deep grief, not just from my beloved friend and from my relationship, but for all that I'd been through and for the person I'd been, you know, pre-diagnosis that I couldn't return to, that I remember just kind of eerily wandering around my apartment and feeling so engulfed by the quiet. And I opened a drawer, and I found a dusty old pack of cigarettes. And I sat on my kitchen floor with my hospital bracelet still wrapped around my wrist. And I smoked a cigarette. Which I don't need to tell you, is not advisable in general, but certainly not when you're coming out of four years of treatment for leukemia. But I, you know, I had this feeling that whatever scaffolding had held me upright, whatever kind of survival adrenaline had, you know, allowed me to endure those four years had collapsed. It was gone. And this moment of realizing that I'd become an expert at surviving, but that I no longer had any idea how to live. And that was going to be my work, and it wasn't going to be easy work.
And so, you know, it took me a year of grieving and seething and feeling so lost to actually come up with a plan. And I think a lot about the language of ritual, these rites of passage and ritualized healing ceremonies that we have to help us transition from one phase of our lives to another. We have baby showers, we have weddings, we have funerals. But there's no ritualized ceremony for surviving a traumatic experience like an illness. And of course, I didn't think about it in these terms then. But essentially, I think one of the hardest parts of coming out of this experience was not having structure. Not having the structure of a treatment protocol, not having the accountability of doctors and nurses checking in and not really having a support system in place, because everyone thought it was over. They desperately wanted me to go back to living, even though I, you know, of course, very much wanted to do that, but had no idea how to. So I essentially ended up creating my own rite of passage, and I knew I needed to leave home for a little bit, because I felt so kind of encased in that experience of illness, that I worried I was going to become like one of those flies that gets trapped and fossilized in amber. And I didn't want to be someone who was defined and encased in the worst thing that had ever happened to me. I knew that I needed to give myself the distance and the time to break out of that. And I also knew I needed space to reflect on what I'd been through and where I wanted to go. But more than anything, I was really seeking out people who had been through their own transitions and moments of reckoning. And so what I ended up doing was learning how to drive, which seemed like a pretty good first step for someone who is, you know, desperately searching for some semblance of independence. And I left home. I rented out my apartment. I borrowed a friend's old, junky Subaru. And I went on the road for what ended up being one hundred days. And I ended up visiting some of the strangers who'd written me letters in response to the “Life Interrupted” column about their own major moments of reckoning and transition. But it took a long time for me to get there.
Nora: Yeah, it's also I mean, 100 days sounds like a long time. And it is also no time at all when you consider that you spent twelve hundred days in a hospital, when you consider that you know how long life can be if we're lucky. And what you mentioned about just sort of this lack of of ritual. Rituals are so important. All of these sort of transitions that we provide for ourselves. And sometimes people find that in a faith structure. Sometimes people find that and like their family of origin or their cultural community. But when you go through, they're almost always around, with the exception of, you know, of funerals, which is ritualized grief and suffering, which is beautiful and so necessary. We don't do it when people survive something because we think the survival is it.
Nora: Right. You got that. You got it. You got it. And it's one of those things you don't know till you know it, that you can be, like, grateful for what you have and grieve what you went through, what you lost. And those things exist together, like very, very closely. And for like different kinds of loss like we used to, when you were grieving the loss of a husband, like there was, you know, the Victorian like widows widows outfit, like you would wear a very specific hat if you were of a certain class. Like you would dress in a way that told people, “I am different, even if you can't see it. Something happened to me. Even if you can't see it, I am not the same.” And I don't know other than, you know, novelty T-shirts, which I am a fine purveyor of, how we do that, how we sort of signal to other people, I am also a person who has been through something. Because what's so I think interesting about, you know, the road trip that you took and the letters that you got is that the people who are reaching out are not necessarily people who have been through everything you've been through, but who know what that feeling is like, who know what it's like to have their life thrown off the rails, to know what it's like to feel trapped somewhere, to feel like they are living a version of their lives that they did not anticipate, would not prefer and and that nobody else can quite understand except another person who is in their own version of that darkness. And in the book you talk about Quentin Jones. And obviously a lot happened after that book, too. So I would love to have you tell his his story or what you feel comfortable with sharing about his story.
Suleika: Yeah, I think, you know, trauma has a way of dividing your worldview into two camps, those who get it and those who don't. And yet, more often than not, people feel so isolated within those moments of transition because you're not just having, you know, to hold these complicated, sometimes seemingly opposing emotions of being grateful that you're alive and angry for what you had to go through to be alive or whatever it might be. But like we said earlier, you're expected to very quickly either return to your life or rebuild a new one. And, you know, I write this in the book, but when the ceiling caves in on you, you no longer assume structural stability. You have to learn to live along fault lines. And that's the conclusion that I came to when I left home on this road trip, that I wasn't necessarily going to find my way back to the kingdom of the well, so to speak, at least not in the way that I thought I would. But I was going to have to learn to live along those fault lines, to learn to live and not kind of messy middle area of being better on paper, but often feeling far from well, both physically and emotionally. And so those different people that I visited became my touchstones along that. They were people who had lived some version of what I'd live, not necessarily similar in kind, but at least in degree. And Quinton Jones or Lil’ GQ, as he's called in the book, which is this nickname, was one of those last stops and probably one of the most impactful ones. And he was a man who had spent at that point more than half of his life on death row for a terrible crime that he committed when he was about 18 or 19 years old. And he had spent, you know, 20 years by the time I went to go visit him, reckoning with what he'd done and trying to spend every single day, you know, in solitary confinement, reimagining the possibilities of who he could be and working on himself and atoning for his past and trying to make a semblance of a life for himself within a tiny cell, knowing that he was never, ever going to get out. And he would have been the first person to tell you that he didn't deserve to ever get out, although he didn't necessarily believe that he deserved the death penalty. But I was so, first of all, intrigued by what had compelled him to write me a letter. He'd written it in response to a column I wrote where I described my incanceration and that experience of being in medical isolation for many months, where you're not allowed to leave your room. That experience of waiting for a verdict, which is what it can feel like when you're counting down the days to a biopsy result or waiting for a doctor to issue you an extended stay or what can feel like a death penalty. And I don't want to overdraw those comparisons. But he wrote me this beautiful letter. And though he'd never been sick a day in his life, he was someone who did like three thousand push ups to start off the day he related to that experience of isolation and of staring down your mortality. And you know, visiting him, maybe more so than any of those visits, had the biggest impact on me. And I was really nervous to go there. I'd never visited someone in prison, let alone on death row. And I remember sitting down to talk to him. And at this point, you know, we'd exchanged maybe 20 something letters, but having no idea if the person conjured from ink would be anything like the person behind that Plexiglas wall. And one of the first questions he asked me when we picked up the phone receivers to talk to each other was what I did to pass all that time I spent in a hospital room. And the first thing I blurted out was Scrabble, because what else are you going to do when you're sick in bed for many years? And I told them how I'd become a really, really good Scrabble player, in part because I think of the morphine that I was on, which somehow, like, loosened the tiles on the board and like, made me understand the game in a way that I hadn't. And he replied and said, me too. And explained how he and his neighboring prisoners would make board games out of paper and call out their plays through the meal tray vents in their cells. And I was struck by so many things when he said that, but, you know, the biggest one being that survival, and the kind of reimagining of a life when it's been upended is its own kind of creative act. And I think, you know, he exemplified that beautifully. He didn't have many visitors for his first 20 years in life. And so his conduit to the outside, his way of creatively reimagining community, was through pen pals. And Quinn was executed in May despite our efforts to try to gain him clemency. But in those final three weeks of his life, we put out a call for people to write him letters. And he was getting like 100 or 200 letters every day. And that was really the thing that sustained him were those letters and those friendships forged with people all over the world. He had friendships with an 8-year-old in England who wrote a letter to the pope on his behalf. He, you know, counseled a young mother in Switzerland who was grieving her son to suicide and shared with her his own experiences with mental illness. He was a friend to so many and he was my friend. And I think, you know, one of the things I've taken away from that experience is how when we dare to share our stories vulnerably, they create a reverberation and a kind of call and response, as was the case for Quinn and me, and we learn again and again that we're more alike than we are different. And at the risk of sounding really fucking cheesy that we're not alone in that sorrow.
Nora: I believe that truly and I think that you and Quinn are such a good example of that, too. Like, just like the hero's journey. Every story is personal and every story is universal. And there's always this sense that when you are in it, you are the only person who is in it and that this is something that can and does at times set you apart. It sets you apart from people you know, who love you and want to be there for you. And it is also what makes you a part of this larger world and this larger experience. And that's so beautiful. And it is also so difficult because sometimes the people who we want so desperately to be the people who get it and show up and like, understand, they just can't. They just can't. And not because they are bad people or because they aren't trying, but because they are acting at like, the very height of their capabilities and they just don't know yet. Like, they just don't know.
Suleika: Yeah. Or they know and they can't. I mean, I'm sure you've been through this too. I, you know, emerge from the whole cancer experience having a very deep, clear understanding of what it means to be a good friend who's going through it. And yet, you know, and I had this experience, my dear friend Max Ritvo, who got sick again very soon after I finished treatment and became terminally ill. This feeling of I cannot go through this again. I know what I need to do to show up for you. I desperately want to show up for you. And right now, I can't. I am protecting my heart. I cannot, you know, grieve another beloved. And that was a really humbling experience for me. And we worked through it. And, you know, I was able to be there for him in the end. But to to have that experience of knowing, you know, how to be a good friend to someone who's sick and not physically being able to bring myself to respond to an email was really sobering and made me kind of think back on the friends who hadn't showed up for me and and think about extending a little more grace and mercy and my interpretation of the why, of why they couldn't be there,
Nora: The interpretation of the why. The interpretation of the why. Same, same. And I actually think it's really beautiful to have you say that as a survivor, because I do think that it's very easy to almost cast people who have been through one specific thing as now like the expert who will never, ever make a mistake. Right. Like, have a question about about cancer? Gotta ask Suleika, okay? She would never mess it up. She would never mess it up. It's like, got a question about widowhood. Don't ask me. I've said so many dumb things. I’ve done so many dumb things.
Suleika: I think sharing the dumb things is what humanizes this experience and what makes it actually relatable, especially when you have any semblance of a public platform. But even you know, writing this book for me, I resisted it for so long. I wanted to live that Hero's Journey arc. I did not want to be in the place that I was in. I wanted to, you know, move on with my life and I couldn't. And this book became about the kind of ways in which, um, illness and recovery from illness can bring you down to your most savage self. It can heighten all the good and also all the bad and the ugly that we prefer to keep concealed.
Nora: That we prefer to keep concealed. And that is so unappealing in a survivor narrative or a hero narrative, which is like, you come out and you're better. And like sometimes you come out and you're just different. And I say this with love. Sometimes people who are suffering are the worst people. Like the year after- my first year of widowhood, I was like, give me a matchbook. I got some bridges to burn. OK, I've got some. Even now, I'm still sort of that way. I think that's in part just my personality, but also, you know, I do have just like this sort of latent rage, truly, just like like a rage mixed with like a survivor guilt and like, a little bit of, like, you know, why am I alive and Aaron's not? When he was- if you rated the two of us, there's not a single person who would be like Nora's better. Not one, including my parents. Like no one. No one would be like, yeah, that was the right. That was that that was just of the universe. No one. And I think that's so I think that's very that's that's important to get out there. It's important to get out there because you do not in the words of Mary Oliver, you do not have to be good. You do not have to be good.
Suleika: Yeah. Yeah. I mean, I'm curious to hear your thoughts on this. I've been thinking about survivor's guilt a lot recently. And for me, the survivor's guilt was never just about the mere fact of my being alive and someone I loved not being alive. It came into play when I was alive in a way that felt out of integrity with myself for what I hoped my life would look like. And, you know, I remember so distinctly in that first year, especially of treatment, when nothing was working, and my prognosis was not good, and everything was terrifying. Like, I remember making these haggling bargains in my hospital room with a higher power where I would say, like, if you let me live, I will be good. I will never lie. I will never be mean to my mom. If I survive, I'm going to live a beautiful life, a happy life, a meaningful one. It's going to be worth something because otherwise, what's the point of going through all this? And where the survivor's guilt came into play for me was when I emerged from the fumes of cancer treatment. And not only was I not living a happy, beautiful, meaningful life, but I was miserable and it didn't feel worth it. And it felt like somebody who could actually be enjoying that survivorship and making their life into something worthwhile was more worthy.
We’ll be right back.
Nora: Aaron would come out of every appointment. And I remember going to radiation with him. And we passed by the open- you know, room where they hang like the radiation cages, like they make molds out of like this plastic mesh and they warm it up and they place it over the part of your body that needs to be radiated. So his was this giant, look like a beekeeper's helmet that covered his, you know, from his shoulders to his head. And it was huge because he had a huge head and we passed by and there was a tiny little torso, like a tiny little for a kid, maybe a baby. And I remember him going like, “That's bad. Like that's, that's bad. This isn't bad. Like, I can do this.” And I just remember being like, no, like, they're both bad. And I was just like, in the wake of him dying and he made everything fun, truly and like, good. And he was so joyous and he was so buoyant and I was just a lead balloon, you know, and I'm like, my kid doesn't know how to catch a ball. I bet Aaron would have done that, you know, like I spend too much time, like drinking Skinny Girl Margarita in the basement, like Aaron wouldn't do that. You know, just like. Yeah, it's not the survival, it's the fact that I probably am not living in in the right way or in a way that is worthy of, you know, this gift that I got that he did not and that someone else could have done this better.
Suleika: Yeah, yeah, yeah. I so know that feeling and and so understand it. And the only way I've ever figured out how to get unstuck is to give language to it, not because I feel any less stuck, but instead of just kind of like swimming in the sea of uncertainty or self-loathing to try to kind of transmute it or translate it into something, even if it's just some conversation or in the privacy of a journal book to actually name the thing that I'm feeling has always been my first step toward reckoning with that, because otherwise I'm existing in a place of wishing desperately that my life were different and feeling terrible that it isn't.
Nora: Yeah and it just becomes this miasma that you can't even like, pin down. It's this sort of fog around you and writing it down, especially if it's just for yourself, for me is like just being able to see it on paper is sometimes like takes all the venom out of it, not all the time, but it will. And I just look at those words. I'm like, that's insane. That's bananas.
Suleika: It defangs it.
Nora: Yes. It's just like that's that's that's wild. That's a thought you had and you wrote it down. That looks very goofy when you write it down.
Suleika: Or disturbing.
Nora: Not a fact. Yeah, that's that's seems, you should you should have that looked at by someone because that can't be true. And it's we're talking about words. We're talking about the power of them. And also like, you want to write you want to write something that is not just, you know, a life interrupted again. And I cannot remember -- I think it was Cheryl Strayed who told you, please tell me that story because it was just so perfect. And I also love when people who are at this sort of like top echelon of being, you know, wise and inspiring. She's like way up there, like, really deliver, like they deliver, God.
Suleika: Oh, it's true. Yeah. It was in the middle of that last year. I was trying to write about something other than illness. So I was actually writing a piece about mentors and reached out to her, we didn't know each other at all, on Twitter to see if she'd allowed me to interview her for it. And she shocked me by A., responding and B., saying that she was like in a hotel room and had a spare hour and could I hop on immediately? And I was like, yes, absolutely. And the irony is, you know, that my piece on mentors ended up being killed and never saw the light of day. But she very much ended up mentoring me. And toward the end of that conversation, she asked me if I was working on a book. And a book had always been my dream and I'd never written one before. And I said to her something like, yes, but whatever I do next all I know is that I don't want to write about cancer anymore. And she said, “Well, the funny thing about that is that when I went to go write Wild, I told myself, whatever I write, I don't want to write about my dead mother.” And of course, the book is about her hiking the Pacific Crest Trail, but it's all about grieving her mother. And you know, what I took away from that conversation and what she told me was you, you know, you don't have you're going to write what you need to write, and you don't have any business trying to avoid it. And she was right. And the book that I very much was hellbent on not writing, but that ended up being my first book was about that lost place that I was in, and this question of aftermaths and how we rebuild our lives when we find ourselves in that place. And it was the most terrifying, vulnerable, harrowing writing process I've ever had. And just to like, add, some heat, I had a Post-it note above my desk that said, if you want to write a good book, write what you don't want others to know about you. If you want to write a great book, write what you don't want to know about yourself. Your face, I know this is a podcast, so no one can see your face, but you have a look of complete horror, you're silent moaning.
Nora: Oh, I oh, that's all just it's all so perfect. And also, I do want to hear about- and I want our listeners to hear about, I mean, the process of writing this because it took time. Like it took time.
Suleika: Yeah, it did. It took me almost four years. Partially because I had to learn how to write a book, but partially because I was still living those events and I didn't have distance from them. And I was clear on one thing, which in writing about trauma, I didn't want to re-traumatize myself. And so there were large chunks while writing the book where I'd get to a point where I'd like, write half a page and have to go lie on my office floor for the rest of the day. And that was my signal that, you know, it was time to set aside the manuscript and like, go do therapy or go do something else I needed to do. And I, you know, was very clear with myself about the writing I needed to do for myself and the writing I wanted to put out in the world. And so there were many different drafts that nobody ever read that never saw the light of day that were the drafts I needed to write for myself before I could write this book. And, you know, I think this is true any time anyone writes a memoir, it's your life and inevitably it involves the lives of the people in your radius. And I felt a great amount of responsibility not just to tell my own story as truthfully and accurately as possible, but to do the same with the stories of others that I've been entrusted with.
Nora: Yeah, you did that very, very beautifully and honestly, it was part of it was part of it was like knowing that ... that like, Aaron had felt things that I could never know.
Nora: No matter how joyful he was. And then the other was, like truly bringing into focus how his mother must have felt, which was like a sort of pain I had to keep ... at a distance, a little bit, like you were mentioning, just for my own self to survive. Like, I couldn't take on that kind of suffering. And it was just very, very beautifully done, Suleika. Just very, very, very beautifully done. I'm just like, in love with your whole family after reading it.
Suleika: Well. And honestly, I had the same experience while writing it. My mom gave me some of her journals that she kept during the time that I was sick. And reading those was a huge privilege. And it gave me a chance to sit in the caregiver's chair, and it was devastating because I think what so often happens in situations like this is everyone's putting on a brave, stoic face for each other. But what that ends up meaning as we're all kind of siloed in our suffering and shouldering all that pain and heartbreak alone. And it was only in the process of writing this book and literally interviewing my parents that we began to talk about how afraid we were, about how devastated we were, that I got to glimpse what their experience was like. And it was heartbreaking and necessary. And I think those conversations really helped us figure out how to move forward with that shared past together.
Nora: You don't have to answer this or it can be off the record, but what are you working on now?
Suleika: Oooh. So I'm working on something that I'm calling The Book of Prompts.
Nora: I love it already,
Suleika: Which are a hundred journaling prompts curated from this project that you helped kick off with your very own journaling prompt called The Isolation Journals. But journaling for me has always been my touchstone. If journaling could be a profession, that's what I would do instead of writing. There's something for me about journaling my whole life, but especially in moments of major upheaval that's felt like this liberated space, that's, you know, you're not writing publicly, you're not writing with a deadline in mind, you're not writing with anyone in mind, and you get to kind of show up as your most unvarnished, unedited, unedited self. And inevitably, you know, it's ended up being the source material for everything I've done. I wrote all my first drafts of Between Two Kingdoms in my book and all my first drafts of those columns in my journal. Yeah. So that's why I'm working on. What else am I working on? I'm training my blind dog Lulu how to play fetch, which we talked about. That's been my summer project. And I've been gardening, which is so not my thing. Call me the Tunisian Martha Stewart.
Nora: That is what I call you. Ok.
Suleika: Thank you. When you introduce me at the beginning of this, make sure to include that.
Nora: The Tunisian Martha Stewart. I'm gonna throw a registered trademark on that.
Suleika: Um, but I don't know about you. I think, you know, I've spent so much of my time in illness and in post-illness working, and that was necessary for me. And it gave me a sense of forward motion that I desperately needed. But I've also been thinking about how that kind of workaholism is its own trauma response. So my goal for this summer has been leisure, which does not come easily to me. And I feel deeply uncomfortable. And all my demons surface when things are quiet and I have lots of unstructured time. But honestly, that's the biggest thing I'm working on right now.
Nora: It's so funny you say that because I have a friend whose life is like currently- I mean, it's like, been falling apart, but right now it's just all crumbles. You know, everything, everything. You pull one one more just falls. And she asks, like, do you think that I will ever be able to live, like, peacefully ever again? Because I've been living like this, just so keyed up just at such a high survival rate for so long. I was like, I don't know, you'll have to be really mindful of it because I'm coming up on ten years since Aaron got sick. And I am only just now seeing that, like really seeing that in myself, like truly noticing how relentlessly I pursued doing and achieving as a trauma response and as just a way to avoid truly feeling things. Any time things were calm, I will shake that rug and we'll move across the country. Right. Like, we'll, like what do I care? Like, I'll go, you know, I'll I'll quit a job. I'll, you know, I'll go do something like bananas on the Internet. It's all like it is all connected. It's all connected to this like, fear and anguish that I could not control. And so I just stifled it down and made it look really good for as long as I could. And the truth is, it sucks like, it's horrible and will always be horrible. And I also asked you a question that I dread myself. Right. But I hate getting that question right. Like, what's next? When I've never once enjoyed what is. The only time I can have true presence in my life is when things are chaotic. Then I can be present for suffering. I can be present for, you know, struggle, like my kid comes home and is like I'm being bullied. I'm like boom. Let's sit down and do this. Everyone's everyone's having a good day. I will be on my phone. I will be you know, I'll be at work.
Suleika: I so relate. I think when everything is calm and stable, I feel scared, because again, I'm waiting for that, you know, ceiling to cave in on me. If you're ever, like, kidnaped or shit hits the fan, I am the best friend in an emergency because I understand survival mode. I'm most comfortable in survival mode. And the thing about survival mode and, you know, we've all experienced this to some degree in the last year with the pandemic, is all the artifice strips away. You know, you have limited energy, limited time, and it reshuffles your priorities in a way that can be very clarifying and very helpful. So survival mode, I know how to do. It's again, that living, that slower, more amorphous, less intense way of navigating the world, that's still an ongoing learning process for me. And I've had to catch myself when I find myself concocting, you know, circumstances or projects that keep me in that survival mode, because that's where I'm most comfortable. And I know it's not sustainable and I know it's probably very unfun for the people around.
Nora: It's so unfun for people around us. And yet I'm like, well, here we go. And I wonder if people ask you this. I got a question this morning, an email that was like, hey, you know, this horrible thing happened to me and I want to xxxxx do I want to do this this this is this. I want to make it into this. I want to you know, you know, alchemize, galvanize. I want to create it into something else. And I want to do it now. And I hesitate to give people advice except when they're specifically asking for it. And what I always say is like, what if you didn't.
Nora: Like what if you didn't? What if you didn't make it into something, you know, big and shiny, but what if you like, sat with it for a minute, which is or went on a road trip with it for a minute, which is you did not do that road trip thinking, wow, this is going to create some great content for a book in, you know, six years or whatever. Like you're like, I need to do this. Like, what if you just did something? What if you did something that was about a living and not about transforming?
Suleika: Well, and I'll say my most kind of outwardly successful projects have been the ones that I started because I felt like it and executed because I needed to without any expectation of what would come of them. And, you know, I remember when I first got diagnosed and I entered the hospital for like, what ended up being a two month stay, I was like, “I'm going to be one of those like gold star cancer patients who goes on to run marathons or start research foundations.” And I had packed my suitcase full of, like, every book I ever wanted to read, but hadn't, including War and Peace, which I still to this day have not read, nor did I read any of the other books in that suitcase, because very quickly, within like a month, I was so sick that the only thing I could do was watch as many Grey's Anatomy episodes as I could. That was what I was doing. I was busy setting the world record for number of Grey's Anatomy episodes watched consecutively, which is a weird choice for someone in the hospital.
Nora: Did it also kind of make you, I mean, I wasn't watching Grey's while Aaron was sick, but I'd watched enough of it that I was like, “So who's the sexy doctor in this hospital?” It's like where are like, the where's like the sexual tension? Where do you guys like? Who's dating?
Suleika: I would like project all of these steamy plot twists onto my nurses and on to my doctors. And I had this young resident one day come to check up on me. And I said, “Is your life anything like the lives of the Grey's Anatomy doctors?” And she was like, “Everyone is significantly less attractive, but we have just as much sex.” And I was like, great, I love this. You made my whole day. But truly, I spent my first year of treatment shuttling between the hospital and my childhood bedroom feeling enraged at the world and in a very dark place where I wasn't productive. But what I did start doing was this hundred day project with my friends and family. And for me, that meant keeping a journal and writing in it every day. And often it was one sentence, sometimes it was one word, often it was the F word. And that was all I did. And it was only much later that I went back to that journal and started to think of it as source material for something. And much later that I decided to pitch this column and to try my hand at writing. But in that first year, I was just trying to, you know, doggy paddle my way through the days and often unsuccessful. And that was important. I needed to ... allow myself to not have expectations because I had so many new limitations that my ambitions and my limitations were constantly butting up against each other and they were constantly leaving me feeling crappy about myself. And I had to rescind all goals and all plans. And it was the healthiest thing I've ever done.
Nora: There's just so much pressure to, I mean, not just like come out of something like better than ever, but having sort of like, you know, some sort of trophy to, like, hold up and and regardless of whether you've survived, you know, cancer or you just survived, like, I don't know, just like life in general, there's this added pressure that somehow, there's something you're supposed to be doing that you're missing. Right. Like there's something that you're supposed to be doing. And I've I've quoted her before, but my mom's friend, Mary, she had lost her husband to glioblastoma. I actually canceled my first date with Aaron to go to her husband's funeral. Night funeral. So she gave me the inspiration for Aaron's funeral. I was like night funeral. Oh, with passed hor d'oeuvers. I didn't do hor d'oeuvers for Aaron's funeral, because we were broke. But I was like, but there will be beer and wine and no food. Sorry. And so I went to her husband's funeral. A few months later, her son drowned. And when Aaron was sick, she sent me an email and she said, “I believe we have a sacred responsibility to live fully in the face of our losses. It's a bitch, though.” And it was all the email said. And I think that is so perfect because living fully is not necessarily like, “Oh, you know, this is Suleika Jaouad. She's jumped out of 100 airplanes and she has set a world record for, like running marathons while, like, you know, administering chemo to, you know, to orphans.” It's like it's like to live fully means sometimes to watch Grey's Anatomy and sometimes to write just the F word in your journal. It is sometimes very unappealing and it is a bitch. And it is sacred and it is all of those things.
Suleika: Yeah. I mean, I think this is probably true of I hope most people who've been through illness, but I am very skeptical of people who've endured what we've lived through and who have, you know, buckets and buckets of advice and neat plans for how to live your best life. Like The New York Times did a little profile of me and the headline of it, which is the thing that I should probably update on my CV, is that Suleika Jaouad does not want to be your mountaintop sage. And I do not want to be anybody's mountaintop sage because it's not picture perfect, it's not a hero's journey, it's still incredibly hard. And, you know, I'm still in that in-between place. I've learned to kind of make a home in that wilderness for myself, but a lot of days. What it’s like for me is I have this reclining arm chair that reclines into a bed and I still work horizontally for many hours in a day because I still struggle with energy and with constant, you know, health challenges because of my compromised immune system. And I've learned to accept those limitations and to integrate them. But I'd be lying if I said I don't have days where I wish I didn't live in an unwell body, where I yearn for limitless energy, where I yearn for a life that doesn't require workarounds in order to do everything.
That was Suleika Jaouad, the author of “Between Two Kingdoms,” and … the Tunisian Martha Stewart. We’re starting that rumor right now. People are saying it, because I'm people, and so are you. We’ve linked her book in the show notes, but you can find it anywhere you get books. I actually just saw it at my local bookstore, Changing Hands in Phoenix, and I thrilled at the sight of it. We’ve also linked to her free project, The Isolation Journals, which gives you weekly journaling prompts to help transform life’s interruptions into creative grist and connection.
If there are authors you want to hear in the Terrible Reading Club, please email us! email@example.com. Or call us at 612.568.4441 and leave a voicemail.
This has been the Terrible Reading Club. Our team is the same as it’s ever been. We’ve got Marcel. We’ve got Jeyca. We’ve got, actually, new team member on this one. Who else, who else. Jordan Turgeon. Duh. And myself, Nora McInerny. Wow, really lost that train of thought, guys. The adderall is wearing off. “Terrible, Thanks for Asking” is a production of APM Studios at American Public Media. Executive producer and editor Beth Pearlman. Executives in charge Lily Kim, Alex Shaffert, and Joanne Griffith.