Transcript for How to Turn a Mistake into Magic with Suleika Jaouad

That's right. Doesn't it sound so much better that way?

Hi. Hi. I'm so happy to be here with you.

I don't believe so.

What is on your mind right now? You know, I was at a dinner party a couple of years ago with a stair pearl and it's like about 10 people which is enough people that everyone ends up splitting off into groups and nobody really talks together and she had such a brilliant opening question the way a stair pearl always has brilliant opening questions and she has everyone to introduce themselves with what was on their unofficial resume. What doesn't go on your CV. In fact, what might just qualify you for a job, which I loved so much. So I am a writer. I think before I was a writer, I was a reader. There's nothing that I love more. then both the refuge and escape that stories offer us. I am currently about two years out from other Kemiah recurrence in a bone marrow transplant, which I feel like I have to mention only because it's still very much informing how I live and how I work, which for better or for worse, has been the ongoing challenge and beauty of the last 10 years, 12 years, 15 years of my adult life. Yeah, as trying to figure out how to live in a body that doesn't always feel well, well, not letting that hold me back from Dreaming as big as I can dream from imagining myself in the future, from filling my life for the things I love most, for sure. My husband and my family and my chosen family of friends and my two little dogs.

How? Well, you know, I think one of the interesting things about living with an illness and having limited energy is that you have to get really clear on what you want to do and who you want to spend time with. And I was someone who before I got sick was always racing million miles per hour onto the next thing with five year plans and 10 year plans and 15 year plans and I was living in the way that I think a lot of us to, which is to say in the kind of aspirational realm, if I can only get here, I'll fill this way. And illness forced me to be hyper present because suddenly the future became a scary place. And so it's hard for me to make long-term plans because I have no idea how I'm going to be feeling. And so what's that's done for me in terms of my every day is that I've had to pick one or two things that I want to do and that can be writing. It can be going on a walk with my dogs, but really honing in on those two things. And then if I can do anything else beyond that, it's bonus. But the interesting thing about that is that rather than cramming my schedule full and thinking of that as productivity, really honing and on the things that I can do that I want to do and picking a few of them has actually ended up being more creatively generative. So I'm a total home body like you. I spend as much time at home as I can. And I think that for me, it's diminishing returns as the day goes on energy wise. So I wake up really early and try to laugh though those first couple of hours to do the work that's most important to me. But I do a lot of it lying down, which is just, you know, the nature of where I'm at right now. And so I've had to find these kind of creative work around. So I don't feel like my ambition is constantly bumping up against my limitations.

I started painting, but I just want to go on record and say, because I want to go on record and say that I don't have superhuman energy. It took me a long time to get to this place. So when I first got diagnosed with leukemia, when I was 22, it was a year out of college overnight, I lost my job, my apartment, and moved back home into my childhood bedroom and ended up spending the better part of that next year in the hospital. And I went into that experience with a suitcase full of books that I brought with me to the hospital and told my parents that I was going to use that time in the hospital to read through the rest of the western cannons. And I did not read a single pen of those books. And I spent a year feeling deeply angry deeply frustrated, deeply defeated, because it felt like the ceiling had caved in on me. And whatever plans I'd had prior to that were no longer possible. And I really didn't see a way to make this thing that had happened to me useful. And in fact, I would get really annoyed at people who had tried to push me to figure out how to make it useful. And so it took me a year of really struggling, of not painting, not writing instead trying to set the world record for the number of grades anatomy up as much consecutively and really being in such a low down place to get to the point where I realized that when your life implodes be it, you know, because of a life threatening illness or some other kind of heartbreaker loss that brings you to the floor, you really have a choice. And the choice for me was that I could wallow in this thing that had happened to me. I could feel a kind of passive agent in this experience that I had no control over or I can accept the new limitations and figure out how I could exist within them. And so ultimately for me, that choice was born out of despair because I didn't want to do it the wallowing way anymore. I needed to find some kind of light in that darkness, and that set me on the path of writing. I had always wanted to be a foreign correspondent, which I obviously can no longer do, but I realized that what I could write about what I could report on was what was happening in my hospital room. And so that became the story. And I think that ability to pivot even when you have the most beautifully laid plans has been a really important survival mechanism throughout this. So most recently during the second transplant, I lost my vision. I didn't lose my vision. My vision was blurred and doubled because of medications that I was on. And so the thing that I had always reached for the thing that's always gotten me through the most difficult passages was writing. And I couldn't really do that at least not in a way that was comfortable or cathartic or enjoyable. And so instead of raging and railing against that, I decided to start painting. And I did it purely for myself without any expectation of outcome. I was using watercolors, which are fluid and hard to control and that seemed like a pretty good medium person who couldn't see very well. And it became this reprieve for me from the fluorescence of the hospital room, the drabness of the hospital room. And so I think for me cultivating a creative practice, especially when it's just for myself, has been the thing that has allowed me to get through.

Hmm, you know, one of my favorite words in the English language is alchemy and it does feel like a kind of alchemy. It's taking the thing that you're most afraid and seizing some agency over it, reimagining it, transforming it into something meaningful and useful and maybe even beautiful. And so I think in moments in my life when I felt most powerless, that process of alchumizing, whatever it can be. And I'll give you a really stupid example. I, when it came out of the hospital, I needed to use a walker, which was not something I ever thought that I would have to do at the age of 34. And I was kind of embarrassed by it. And it was like ugly, clunky walker. And I hated using it because it reminded me of how weak I'd become and every time I used it, I measure where I was at physically with where I'd been a couple months before. And so what I did was I ordered a giant bag of rhinestones off the internet and a hot glue gun and I bedassled it. Of course, and so instead of people looking at me with pity when they would do this young woman with a walker, they would laugh or talk about the rhinestones. And so I think for me that process of alchumizing. the pain into something creative and fun and purpose-driven has been the sort of guiding principle for me throughout my life.

It is a conscious decision. And it resonates so deeply. I mean, I have been really interested in how people confront their mortality. Of course, for selfish reasons, because it's something I've had to do myself, but it's also something I've watched so many friends of mine do. And, you know, as a culture or afraid of death, we have all kinds of youth emissions that we use when someone dies. We say someone passed away, someone gained their angel wings. And I completely agree with your artist friend. I do think the root cause of a lot of our fear is death. But the interesting thing is that for more than a decade after I first got sick, I lived in complete fear of relapse. I didn't believe that I could do it. Again, I didn't believe that I could put myself through those treatments and that growing transplant. I don't believe based on my past experiences that a relationship could survive and illness like this. I had so much fear and so much baggage around the possibility of relapse and of death. And then it happened. And I think sometimes when your worst fear comes to pass, It can be so liberating because instantly, you know, as terrifying as that news of recurrence was, I knew I was going to do whatever I needed to do to stay alive and more than that to not to survive, to try to live as fully as I could within whatever time I had, however short or long. And I don't know that I'm afraid of death. But I think for me, the question has been just that. It's how do we not just survive but live. And so that has been the focus for me.

You know, you're absolutely right. Life is a terminal condition for all of us. I'm not special. I live a little closer to that truth. Maybe, but I actually think living closer to that truth, meaning our finitude. has been really helpful because what it's done is it's woken me up. It's woken me up to the fact that none of us have and most time to get to the things that we want to do to spend time with the people we love most, to do the things that feel most meaningful, even if They're not things that anyone else will notice or see. And so for me, it's accepting that finitude. It's instead of feeling kind of unmoored because you're in a liminal space, understanding that it's the great equalizer. All of us are in transition all the time. And the thing that comes to mind and the thing that I think of when I wake up is what my oncologist told me when I emerged from this most recent treatment and and found out that while my transplant had worked, I was going to be in treatment indefinitely for the rest of my life. And I started to cry when he said that and he asked me what was wrong and I said it's the word indefinite. I can survive anything as long as there's an end date and sight, but I don't know how to keep doing this. when it's ongoing. And what he said to me was, you have to live every day as if it's your last day, which is the thing that people say and they say it with good intentions. And every single time he would say that to me, I felt complete panic because what does it even mean to live every day as it's a loss? And like, do I empty my bank account and, you know, go on vacation and possibly declare bankruptcy later. Do I, you know, the impression and godly amounts of ice cream for every meal? I don't know, but I put me in this place of panic of feeling like I had to ring as much meaning out of every moment. And that if I didn't do that or I couldn't do that, I just somehow feeling. And so I've had to reframe that for myself. I had to very gently politely explained to my oncologist that as well intention as the buzz it wasn't helpful to me. And that instead, but I'm trying to do is not to live every day as if it's my loss. It's to live every day as if it's my first to wake up with a sense of awe and curiosity and wonder that a newborn baby might. And that doesn't look like crossing off bucket list items. It often looks like the simple things. It looks like play. It looks like taking my dogs for a walk in the woods. It looks like curling up with a good book and allowing myself the luxury of unstructured time where I can sort of tap into my curiosity, just for the hell of it, not with any sort of end goal or expectation associated with it. And so I think that's how I've been navigating the uncertainty of being in this heightened, liminal space by taking the pressure off and really following the threads of my curiosity and the things that bring you joy.

So many things recently have become obsessed with jellyfish. I've been painting a lot of jellyfish. They're the only biologically immortal creature. They've survived five massive sanctions on the planet. They were here before dinosaurs and trees and flowers and fungi. And fascinated by them. And fascinated by the fact that they have no blood or bones. They're all nervous system, which is like a correct description of how I think of myself. And so yeah, I've been reading a lot about jellyfish and I've been painting jellyfish and allowing that painting to emerge without thinking too much about it and only kind of after the fact may be decoding why jellyfish.

Yeah, so I was a week out from a bone marrow biopsy when I started painting these jellyfish and the woman who was swimming with the jellyfish and it was unclear to me as I was painting it if the jellyfish or friends or her foe and I realize after the fact that that's exactly what it feels like to be waiting for a results you're swimming in this ocean of not knowing and you don't know what's going to happen to you if you're going to sink or swim and sometimes the best way to conserve your energy is just simply float.

showing up in difficult moments, especially as the moment of accountability that all relationships arc toward and yet it's the hardest thing to do. There's a reason why when we hear someone's tragic news, we often say words fail because we don't know what to say. We want to pick the perfect words and often when we can't do that, sometimes we don't say anything at all and we stay away. And I've been the recipient of that kind of distance and silence. I've also been the person who didn't know how to show up and therefore didn't and came to regret it deeply. But I think the strange and wonderful thing about being sick is watching people come out of the woodwork, not necessarily the people you've expected, although some of those two, but all kinds of people who've show up with such generosity and such presence and it's really raised the bar for me for the kind of friend I want to be to the people around being. And the interesting thing is it's not necessarily grand gestures. I think the best kind of showing up is when you make an offer of specific help. You don't text someone say, let me know if you need help because if you're anything like me, I will never ask for help, ever, ever, ever. But it's doing the thing maybe that you already love to do. So if you love dogs, you offer to walk some dogs or to watch them. If you love mowing the lawn, you go in most of them on and I'll give you a couple of examples of acts of showing up that I've been the recipient of most recently, which is that when I was getting my bone marrow transplant, I spent about six weeks in the hospital, and I was at the height of a macron, which meant that I had really limited visitors. I could only have one to two people during very constrained visiting hours. And so I was really isolated in this hospital room. And my friend, Bihida, one day called me and said, look outside your window. And I looked out on the window. This is a midtown Manhattan onto York Avenue. And she was just dancing like a maniac. And she's not a professional dancer. But she loves to dance. And she just danced as if nobody was looking for about five minutes free. And of course, everyone was staring at her as they were walking by. And it was just this tiny moment of connection. And I was laughing and I was knocking on the window. She was waving to me and that was it. And it just filled my whole day with joy. Liz, our friend Liz, I remember on Valentine's Day, quietly without telling me anything went outside once again on the sidewalk outside the hospital and made a heart out of little LED lights. And that was it. And I think, you know, there's no right or wrong way to show up. But ultimately, I think the most powerful acts of showing up amount to this, which is I'm here. I love you. I'm going to keep being here.

So I had a lot of fear going into this. Like I said, the first week that I found out I was sick and that I started chemotherapy again. John, my husband was nominated for 11 Grammy nominations. And it's a normal. It's felt like totally normal. But it felt like we were leading these polar opposites parallel existences, and it felt really important to us that we did have the same existence. And one of the very first things that we did when we got that news was we got married. We've been talking about getting married for a while and because of the pandemic, we were waiting until we could have some big blowout weekend extravagance in New Orleans for the second line parade. And what John said to me was we had a plan and we're not going to let this get in the way of that plan. And so we ended up getting married the night before I was admitted to the hospital and a tiny little makeshift ceremony in our living room with fried chicken sandwiches and bread twists for rings because we didn't have time to get rings. And it was this active love, but also of defiance that really set the tone for the coming months. For us, I think our shared language is a creative language. So when I went into the hospital, there were a couple of weeks where he couldn't be there. And what he decided to do was to write me a lollabies. He would send me a lullaby every single day so that I could listen to it so that it could blanket all the noises of the hospital, the beeping of the IV poles and the weasing of the respirators. And it felt like such a gift of love to hear his voice, to hear his music in that room. And what I would do is I would text him photos of my paintings and we would talk about it. And we were in spite of Everything shifting and changing so rapidly, a friend of ours said that to describe that period of our life as a roller coaster was an insult to the roller coasters. We were really trying to figure out how to bridge that distance and to find creative ways to do it.

What do you mean by that? I think especially when you feel involved in darkness to find the light to hold onto the light can feel like a radical act of defiance. And so, you know, for us, to spend our time on the phone talking about paintings and talking about lollabies rather than whatever that morning's blood test showed, although we of course were talking about that too, but to keep the focus on the thing that allows us to find the light was our way of kind of reimagining this period of our lives, reimagining our survival as a creative act. John is a master of this. He loves and know. He loves projection because it lights a fire under him. I'm a little more sensitive rejection. But yeah, I think his attitude is, oh, you're telling me I can't do this. But me find a creative work around and show you that we can.

So this symphony that I had watched him everything into, not for the course of five years, that for so many reasons that aren't in the film can very close to not happening, ended up premiering for one night only at Carnegie Hall. It was the first time I left my house with a hospital bubble and about nine months, because I didn't care about the risks. I had my N95 mask on and I needed to be there to see this. It was such an important moment for him creatively. And he brought together this orchestra. He wanted to reimagine what in orchestra in the 21st century, but look like. So there were classical musicians and jazz musicians and opera singers and indigenous musicians and musicians who didn't even know how to read music. It was such a complex orchestration. And so we was already really nervous going into this. And the symphony starts. It's in the first movement. And all of the sudden, the power went out on stage. And you see it in the dock where all of the musicians are like, oh shit, the power's out. What do we do? Like you see the panic and the whites and their eyes and everyone's just kind of holding their breath and John paused. And then he smirked and he just started to improvise. And he improvised this beautiful piano solo for about 10 minutes. You know, he kept going thinking Let's hope they're figuring out how to get the power back on on stage. And he played for 10 minutes in the power event back on and they continued with the symphony, but the most amazing thing about that was that nobody in the audience had any idea the power had gone out. I knew. because I knew the piece, but nobody had any idea. And that, to me, is the power of John's ability to improvise into pivot. And I've thought a lot about what I would do in that situation. I think most of us, myself included, would run off the stage, sobbing, and profusely apologize to everyone I'm calling it a night.

Totally. And You know what I love most was his smart. It was again that little like mischievous act of defiance. And when you ask people what their favorite part of the symphony was, they said the piano is so low. It was the mistake that ended up being the magic. So I think For whatever reason, because of the various twists and turns of our individual lives and our joint lives, that's been the way that we move forward. It's taking things that can feel like a mistake, even like a catastrophe, and rather than turning away from it or running off the stage in tears, trying to make something magical and unexpected out of it. I still get shivers by the way, just thinking about that moment. Like I'm getting anxiety, just thinking about it.

Oh, I did have to ask the director of the doc if he had pulled the plug on stage because I was just like, this is too much. Everything that could possibly go wrong has gone wrong in the last six months. Let us have this one moment without drama.

I think It's a different form of showing up. And in that moment, he had to show up for this infinity, but he also showed up for himself. He was like, I have worked too hard for this to end here. I'm not going to walk away. I'm not going to turn away. I'm going to meet this moment where it's at and have fun with it.

You know, I am a deeply fearful person, a deeply anxious person. I have always been my first instinct is to control, to do my do diligence to manage risk. And I think What living with an illness for a lot of my adult life has done is it's forced me to surrender because there is no control when you're in that situation. You have no control over the mysterious happenings in your body. You have no control of your schedule. We've had to reschedule this podcast two times because I wasn't well enough to do it the first two times, which I was totally horrified. I've been looking forward to this so much, but also I've just had to accept that that's how it is, that I can make plans, but that if I cling to those plans too much, if I'm too rigid, It's a recipe for endless discouragement and defeat. And I think that's true for most of us. Things do not go according to plan. But instead of clinging to that, of trying to control it, of trying to muscle through no matter what, but I've tried to do and I know it makes me miserable. I've had to get limber and flexible. Like a jellyfish. Like the jellyfish.

Yeah, you know, I think I've never been interested in giving self-help advice have never been interested in speaking from some mountaintop of wisdom. I think I'm interested in the struggle and interested in the process of how we navigate these in between places. And I want to show that. I don't want to show the end result once I figured something out. because first of all, I'm always eternally figuring the same things out. The universe is always popping me over the head, but the exact same lessons over and over and over again. But I'm passionate. I think about sharing stories, be it my own or recorded stories or the stories of others where people dare to reveal their most unvarnished vulnerability when they haven't figured out how to tie everything up and then need bow or to package everything into a tidy little takeaway. I'm interested in that in between place. You've talked so beautifully about finding purpose in the pain. And I know what it's done for me when I read a book or I read something by someone where they dare to show that kind of vulnerability. And I think to myself, wow, I didn't know you were allowed to say that. It didn't know you were allowed to write that. And it knew you were allowed to feel that and to feel that sense of recognition to feel that sense of being known. And so in my own work, I'm always trying to get to that place. to the untidy truth beneath the truth beneath the truth. Because, you know, we live in this age you said earlier, I seem to have a big life. If you spent any time on social media, it feels like everybody has a big life or certainly a bigger life than you do. And I think it's so easy to live under that illusion that somehow people are navigating their struggles in a better way than you are. that they keep a tidy or house than you do that they have a more Instagramable couch than whatever it might be. And so my act of service is chronicling the messy middle without knowing what the destination is or where it's going to lead.

So I'm working on two books and I just want to say every time I'm in a fellow period where I'm not being productive, like when I was in the hospital, I couldn't do my book tour. I couldn't do so many things that I wanted to do and I felt kind of bad about myself and I was like I'm painting these stupid paintings for myself and I'm having fun with it. But whatever, that's not my career. It's like a thing I'm doing on the side. Whenever I feel like I'm not working. And hindsight, it always ends up being the period of time that leads to the deepest work.

Exactly. You're in that Christmas space of becoming.

No, but it's exactly that. So one of the books I'm working on, which I never thought at the time would end up being anything as a book of those paintings and essays accompanying them. Okay. And the other book I'm writing is about journaling because that is exactly a perfect example of a thing I do every day. that I don't think of as work work because it's not part of my schedule, it's not part of my to-do list, but it has been the through-line my entire life. And it has been that tool for Alka made for me, of just writing and showing up on the page as my most unedited, unvarnished self without giving any thought to punctuation or grammar and just following that thread of curiosity where I've read guns. And so the painting and the journaling are both things that I have done for myself for so long without thinking about them too much or thinking of them as productive. And anyway, or tied to my workware. But so often workwork especially as a writer doesn't happen when you're hunched over your desk and banging your head against your laptop. Mm-hmm. It's when you're out, living, and growing, and feeling uncomfortable, and shutting old skins.

Well, I love an actor you and I love this beautiful pod squad that you've built. So thank you for having me on.

Okay, so John is a very dorky awkward boy. I met when I was 13 years old that band camp. John to the world is John Batiste musician. I don't even know how to explain him. Thinker revolution brilliant beautiful human being and a walking embodiment of love.

Exactly. That's it. It's the best. It's the best. Yeah. And I hope you start painting.

Amazing.

One thing I highly recommend, just quick note, I'm about to paint the whole back wall of my office for fun, and then I might paint over it in a way if it turns out to be a disaster. That's a great idea.

Okay, so 60 or 70% of the things in our house, it comes from Facebook Marketplace. I am the queen of Facebook Marketplace. I'm obsessed type anti-isle and to Craigslist or Facebook Marketplace, and YouTube can score gold.

Thank you, thank you.