WEBVTT - Part 1: Life, Interrupted with Suleika Jaouad 0:00:14.956 --> 0:00:15.436 Pushkin. 0:00:30.716 --> 0:00:37.356 That was really the moment that I realized whatever future 0:00:37.516 --> 0:00:41.276 I'd imagine for myself not only wasn't going to happen 0:00:41.556 --> 0:00:44.076 in the way that I'd planned, but that I might 0:00:44.116 --> 0:00:48.116 not get to exist in the future at all. 0:00:48.236 --> 0:00:51.956 Suleka Jawad was diagnosed with an aggressive form of leukemia 0:00:52.076 --> 0:00:55.156 when she was twenty two years old. As she faced 0:00:55.196 --> 0:00:58.636 her mortality, she felt clarity about how exactly she wanted 0:00:58.676 --> 0:00:59.436 to spend her time. 0:01:00.316 --> 0:01:04.516 I felt a real sense of liberation to do the 0:01:04.516 --> 0:01:08.396 things I wanted to do simply because they nourished me, 0:01:08.476 --> 0:01:11.196 because they felt life giving, and not because they were 0:01:11.196 --> 0:01:14.236 the things I thought I should be doing. And so 0:01:14.396 --> 0:01:18.196 for the first time in my life, I began creating 0:01:18.476 --> 0:01:19.716 entirely for myself. 0:01:24.396 --> 0:01:27.836 On today's episode, why Survival is its own kind of 0:01:27.916 --> 0:01:32.756 creative act, I'm Maya Shunker and this is a slight 0:01:32.836 --> 0:01:35.476 change of plans, a show about who we are and 0:01:35.516 --> 0:01:47.916 who we become in the face of a big change. Okay, 0:01:48.036 --> 0:01:53.036 so full confession. I'm obsessed with Suleka Jawad. Her mind 0:01:53.076 --> 0:01:55.716 and heart speak to me in a way few people do. 0:01:56.796 --> 0:01:59.556 I followed her writing from Afar over the years, and 0:01:59.596 --> 0:02:03.516 I found her honesty so startling at times, it's taken 0:02:03.556 --> 0:02:07.756 my breath away. Suleka is unafraid to tackle some of 0:02:07.756 --> 0:02:11.436 the hardest questions we fine as humans. When she first 0:02:11.436 --> 0:02:14.356 started working on her memoir, a friend told her about 0:02:14.356 --> 0:02:16.796 a saying they'd heard. If you want to write a 0:02:16.836 --> 0:02:19.556 good memoir, share what you don't want other people to 0:02:19.556 --> 0:02:22.636 know about you. If you want to write a great memoir, 0:02:23.116 --> 0:02:26.876 share what you don't want to know about yourself. Suleka 0:02:27.236 --> 0:02:31.676 wrote a great memoir. The title of her book, Between 0:02:31.716 --> 0:02:35.316 Two Kingdoms, a Memoir of a Life Interrupted, is a 0:02:35.356 --> 0:02:39.876 nod to the writer Susan Sontagg. Sontag wrote that everyone 0:02:39.876 --> 0:02:43.436 who is born holds dual citizenship in the Kingdom of 0:02:43.476 --> 0:02:47.036 the well and in the Kingdom of the sick. Suleka 0:02:47.076 --> 0:02:50.196 writes about her experience in both these kingdoms and the 0:02:50.236 --> 0:02:54.676 difficulty of navigating the space that lies between them. Her 0:02:54.716 --> 0:02:58.956 story begins in twenty ten. She just graduated from Princeton 0:02:59.076 --> 0:03:01.876 University and had big dreams for the road ahead. 0:03:02.876 --> 0:03:08.036 So much of my sense of self worth, like most 0:03:08.516 --> 0:03:13.076 Type A strivers, was wrapped up in my plans for 0:03:13.116 --> 0:03:17.396 the future, and I had all kinds of one year 0:03:17.716 --> 0:03:21.436 and five year and ten year plans, and I had 0:03:21.716 --> 0:03:26.356 a dream of becoming a war correspondent. I wanted to 0:03:27.556 --> 0:03:32.556 report from North Africa, where I'm originally from, where my 0:03:32.756 --> 0:03:35.996 entire family currently lives. But also, like a lot of 0:03:36.036 --> 0:03:38.836 twenty two year olds, I had no idea what the 0:03:38.876 --> 0:03:41.516 future actually had in store for me. I had lots 0:03:41.556 --> 0:03:45.436 of daydreams and plans that I didn't really know who 0:03:45.476 --> 0:03:49.116 I buys met. And so what I decided to do 0:03:49.316 --> 0:03:52.236 was to take a job as a parent legal and 0:03:52.916 --> 0:03:56.756 a law firm in Paris, and to take the time 0:03:56.796 --> 0:04:00.396 I needed to find my way. And you know, there 0:04:00.516 --> 0:04:04.156 was this sense of endless time, as there often is 0:04:04.516 --> 0:04:07.116 when you're young. Time to figure out what you want, 0:04:07.476 --> 0:04:10.636 time to figure out who who you want to become, 0:04:10.716 --> 0:04:15.116 and how to plot the distance between you and that person. 0:04:15.836 --> 0:04:20.396 And so I was brimming with joy, bringing with a 0:04:20.396 --> 0:04:25.556 little bit of anxiety about finding my way forward, but 0:04:26.116 --> 0:04:30.116 it was really this sense of being on the edge 0:04:30.396 --> 0:04:33.876 of something exciting. Yeah. 0:04:33.956 --> 0:04:36.756 So you had had worrying health symptoms for some time, 0:04:37.236 --> 0:04:40.156 and when you were in Paris things got worse. Can 0:04:40.196 --> 0:04:42.876 you tell me about how your health was starting to fail? 0:04:43.996 --> 0:04:49.156 It began with an itch, this relentless, maddening itch on 0:04:49.196 --> 0:04:52.876 my skin that popped up during my senior year of college, 0:04:52.916 --> 0:04:59.316 and followed by that was fatigue and frequent infections and viruses. 0:04:59.356 --> 0:05:02.356 But every single time I went to a doctor, they 0:05:02.356 --> 0:05:05.676 would look at whatever specific ailment I was coming in, 0:05:06.316 --> 0:05:09.596 treat that, and then send me home. And so it 0:05:09.676 --> 0:05:12.876 took about a year and a half until I was 0:05:12.916 --> 0:05:15.716 about six months into my time in Paris, and I 0:05:15.756 --> 0:05:20.596 had grown so pale that my skin looked almost translucent, 0:05:20.796 --> 0:05:24.956 and I was so exhausted that I was drinking, you know, 0:05:25.076 --> 0:05:28.396 up to eight espressos every day to get through my 0:05:28.596 --> 0:05:31.596 job at the law firm, and spending my lunch hour 0:05:31.916 --> 0:05:35.796 napping in the office closet. That it began to occur 0:05:35.876 --> 0:05:40.356 to me that something was deeply wrong. But as is 0:05:40.756 --> 0:05:45.676 often the case, especially for young people, especially for women, 0:05:46.556 --> 0:05:52.756 the challenge of getting an actual diagnosis proved to be 0:05:53.076 --> 0:05:56.796 so much harder than I possibly could have imagined. You know, 0:05:56.876 --> 0:06:03.516 we have so many examples throughout history where a woman's 0:06:03.596 --> 0:06:08.956 physical affliction is attributed to their mind, to a sense 0:06:08.956 --> 0:06:13.916 of hysteria, and that's very much how I felt. I 0:06:14.036 --> 0:06:17.196 kept saying, I think something is wrong. I've never been 0:06:17.236 --> 0:06:20.036 sick in my life. I've never even broken a bone, 0:06:20.156 --> 0:06:23.716 and I can barely function. I so often would find 0:06:23.756 --> 0:06:28.916 myself on an exam table, feeling like I wasn't being 0:06:28.956 --> 0:06:33.116 taken seriously, feeling like I wasn't being believed. A doctor 0:06:33.756 --> 0:06:38.236 I saw prescribed anti anxiety medications to me. Another that 0:06:38.316 --> 0:06:41.356 hospitalized me for a week and ran every test they 0:06:41.356 --> 0:06:45.276 could think of release me with a discharge of burnout syndrome. 0:06:45.996 --> 0:06:50.196 And I felt this sense of intimidation that I think 0:06:50.356 --> 0:06:53.676 many of us have felt when we're in a doctor's office, 0:06:54.116 --> 0:06:57.636 the sense that they had the medical degrees, not me. 0:06:57.876 --> 0:07:03.676 Who was I to question their judgment? And so at 0:07:03.676 --> 0:07:08.196 the end of this confusing year and a half, ultimately 0:07:08.556 --> 0:07:11.596 I found my self in an emergency room in Paris 0:07:12.076 --> 0:07:14.996 with blood counts so low that I had to immediately 0:07:14.996 --> 0:07:17.676 get on a plane back home to Upstate New York 0:07:17.716 --> 0:07:20.676 because if they dropped any lower, I wasn't going to 0:07:20.716 --> 0:07:24.436 be able to fly at all. And it was shortly 0:07:24.476 --> 0:07:29.956 thereafter that I learned I had been diagnosed with an 0:07:29.956 --> 0:07:34.956 aggressive form of leukemia. And it was one of those 0:07:35.116 --> 0:07:41.996 bifurcating moments in a life where even though at twenty 0:07:42.036 --> 0:07:45.996 two I couldn't really wrap my head around what this 0:07:46.076 --> 0:07:49.356 illness meant for me. I didn't have friends who had 0:07:49.396 --> 0:07:54.116 suffered from cancer, and I didn't really have anything to 0:07:54.796 --> 0:07:56.556 sort of give me an indication of what it was 0:07:56.596 --> 0:08:01.796 going to be like. But I knew immediately that whatever 0:08:02.436 --> 0:08:09.596 sense of innocence I've had had been buried and everything 0:08:09.716 --> 0:08:13.116 was going to be different from there on out. 0:08:14.116 --> 0:08:16.916 What were you told about your prognosis at the time, 0:08:17.116 --> 0:08:21.716 and what was it like to leave behind all of 0:08:21.756 --> 0:08:24.436 those dreams and hopes that you had been carrying, just 0:08:25.236 --> 0:08:27.556 you know, weeks prior about what your future was going 0:08:27.596 --> 0:08:28.036 to look like. 0:08:29.196 --> 0:08:35.396 So initially I did all the googling that they tell 0:08:35.436 --> 0:08:37.876 you not to do, and I knew from the very 0:08:37.916 --> 0:08:42.116 start that my prognosis was not good, that the cards 0:08:42.356 --> 0:08:45.996 were stacked against me. They told me I had about 0:08:45.996 --> 0:08:51.116 a thirty five percent chance of long term survival. But 0:08:51.156 --> 0:08:56.116 when I entered the hospital, I still had a kind 0:08:56.156 --> 0:08:59.836 of naivete about what this whole experience is going to 0:08:59.876 --> 0:09:04.116 be like. I packed a suitcase full of books like 0:09:04.436 --> 0:09:07.436 War and Peace, and I cheerfully announced my parents that 0:09:07.516 --> 0:09:11.156 I was going to use this summer in the hospital 0:09:11.356 --> 0:09:14.316 to read through the rest of the Western canon. I 0:09:14.316 --> 0:09:15.956 thought I was going to write a book. I thought 0:09:15.956 --> 0:09:17.716 it was going to do all these things, and of 0:09:17.756 --> 0:09:20.476 course I didn't end up doing any of those things. 0:09:20.756 --> 0:09:28.436 And it was a slow crushing realization that to hold 0:09:28.476 --> 0:09:31.756 on to the person I'd been, and all of the 0:09:31.876 --> 0:09:35.876 dreams and plans that that person had, was only going 0:09:35.916 --> 0:09:41.516 to be a recipe for defeat and discouragement. And by 0:09:41.556 --> 0:09:45.036 the end of that summer, I had lost about forty pounds. 0:09:45.076 --> 0:09:47.876 I had lost on my hair and my eyelashes, my eyebrows. 0:09:48.796 --> 0:09:51.956 But worse than that, I had learned that the standard 0:09:52.356 --> 0:09:55.796 chemotherapy I'd been doing all summer not only hadn't worked, 0:09:55.956 --> 0:10:00.076 but that my leukemia was even more aggressive, and that 0:10:00.236 --> 0:10:03.396 my only option was going to be a clinical trial. 0:10:04.716 --> 0:10:06.516 You went from assuming that you were going to have 0:10:06.556 --> 0:10:10.036 this relatively short stay, I mean not just so like 0:10:10.116 --> 0:10:12.916 in your case, but like highly productive reading war and 0:10:13.036 --> 0:10:17.316 peace stay, which by the way, will never ever be 0:10:17.396 --> 0:10:20.956 in the cards for me ever, no matter what illnesses 0:10:20.996 --> 0:10:24.716 I face. I'm more in the mindy Kaling, you know, 0:10:25.196 --> 0:10:29.556 memoirs face. And then and then you find out this 0:10:29.596 --> 0:10:32.596 devastating news, which is okay, you're going to have to 0:10:32.676 --> 0:10:36.036 enter this clinical trial. What was it like to have 0:10:37.596 --> 0:10:39.436 the goalpost change like that. 0:10:40.196 --> 0:10:43.676 I was devastated. I remember it so clearly. It was 0:10:43.716 --> 0:10:51.436 the morning of my twenty third birthday, and I had 0:10:51.716 --> 0:10:55.916 packed up everything in my room because I wanted so 0:10:56.076 --> 0:10:59.476 badly to be discharged. I had taken down the posters 0:10:59.516 --> 0:11:04.716 and the getball cards. And the hope from the very 0:11:04.796 --> 0:11:09.516 beginning was that I would get into remission. But theallenge 0:11:09.556 --> 0:11:13.316 was that I not only couldn't get into remission, but 0:11:13.516 --> 0:11:18.436 my leukemia was running rampant throughout my entire body. I 0:11:18.476 --> 0:11:24.596 felt when I received that news, the scaffolding inside of 0:11:24.636 --> 0:11:30.276 me crumble. It felt like a breach of contract with 0:11:30.356 --> 0:11:33.756 the natural order of things, because youth and health are 0:11:33.796 --> 0:11:39.916 supposed to go hand in hand. And that began a 0:11:40.036 --> 0:11:45.076 very different chapter where I really retreated into myself. I 0:11:45.156 --> 0:11:50.076 had this window overlooking Central Park from my hospital room, 0:11:50.116 --> 0:11:53.556 which was a great privilege to have landed in this 0:11:53.676 --> 0:11:58.676 room by chance. And I remember closing the blinds because 0:11:58.716 --> 0:12:02.436 what had once brought me comfort to be able, you know, 0:12:02.596 --> 0:12:07.196 to see the world continuing to move, suddenly felt like 0:12:07.676 --> 0:12:14.956 a reminder that whatever future I'd imagine for myself, not 0:12:15.036 --> 0:12:18.596 only wasn't going to happen in the way that I'd planned, 0:12:19.156 --> 0:12:21.356 but that I might not get to exist in the 0:12:21.396 --> 0:12:27.396 future at all. And so for the next couple of months, 0:12:27.796 --> 0:12:34.876 I sank into a pretty deep well of depression. I 0:12:34.956 --> 0:12:40.876 no longer wanted to have visits from friends, I stopped reading, 0:12:40.996 --> 0:12:46.716 stopped making plans. I instead filled my days by trying 0:12:46.796 --> 0:12:50.356 to set the world record for the number of Gray's 0:12:50.396 --> 0:12:56.276 Anatomy episodes watched consecutively. And I was angry. I remember, 0:12:56.516 --> 0:13:01.316 you know, being told stories of cancer survivors who had 0:13:01.356 --> 0:13:08.596 gone on to do extraordinary things, and feeling such rage 0:13:09.196 --> 0:13:14.036 at the idea that anything about what I was living 0:13:14.676 --> 0:13:18.876 could be useful, could be turned into anything other than 0:13:18.916 --> 0:13:22.396 what it was, which was a deep sense of isolation 0:13:22.836 --> 0:13:27.556 and a deep sense of fear about what was to come. 0:13:28.316 --> 0:13:31.236 Yeah, when I told you you'd have to enroll in 0:13:31.236 --> 0:13:34.916 this clinical trial, what was the chance of a successful outcome? 0:13:35.916 --> 0:13:39.716 I had no idea, And that's what made it especially challenging. 0:13:40.116 --> 0:13:43.716 The clinical trial that I enrolled in was a phase 0:13:43.756 --> 0:13:48.156 two clinical trial, meaning they not only didn't know if 0:13:48.196 --> 0:13:50.996 it was safe, but they had no idea if it 0:13:51.036 --> 0:13:56.436 was going to be effective. Okay, and It really required 0:13:56.516 --> 0:13:59.236 what I can only describe as a leap of faith 0:13:59.796 --> 0:14:05.156 to submit my body, to submit my family to what 0:14:05.356 --> 0:14:09.876 ended up being a harrowing and grueling experience. 0:14:10.556 --> 0:14:15.196 Yeah, I do wonder whether it was ever a question 0:14:15.236 --> 0:14:17.076 of whether you were going to go through with the treatment. 0:14:17.276 --> 0:14:20.756 I could easily imagine myself saying, like, please, everyone I love, 0:14:21.276 --> 0:14:24.876 spare me this pain and suffering, Like I'd rather just go. 0:14:26.356 --> 0:14:30.196 We had so many difficult conversations as a family, especially 0:14:30.236 --> 0:14:33.836 because the side effects of the clinical trial were so 0:14:33.956 --> 0:14:39.476 brutal that they became nearly lethal on a number of vacations, 0:14:39.516 --> 0:14:43.076 and I ended up spending about four out of the 0:14:43.116 --> 0:14:48.236 next eight months and isolation in the hospital, warding off 0:14:48.476 --> 0:14:53.836 everything from septic shock to life threatening infections and fevers. 0:14:54.316 --> 0:14:59.876 And that was the impossible Sophie's choice. Is this going 0:14:59.916 --> 0:15:02.396 to kill me? Is this going to save me? But 0:15:02.436 --> 0:15:04.956 I would say things to my parents sometimes when I 0:15:04.996 --> 0:15:08.396 felt I was really in a low down place, that 0:15:08.556 --> 0:15:12.436 you know, maybe I was better off stopping the clinical trial, 0:15:14.356 --> 0:15:18.156 doing some kind of make a wish bucketless trip to 0:15:18.276 --> 0:15:22.436 some tropical island and smoking pot and doing whatever else 0:15:22.476 --> 0:15:26.396 it was that I wanted to do, And more than 0:15:26.436 --> 0:15:30.716 anything to really savor whatever time I had left with them, 0:15:30.876 --> 0:15:35.756 with my friends, with my loved ones, rather than torturing 0:15:35.796 --> 0:15:41.636 myself with these treatments. But I had this amazing oncologist, 0:15:41.996 --> 0:15:46.596 the late doctor James Holland, who, when I was at 0:15:46.636 --> 0:15:51.236 my most defeated place, began during his lunch hour coming 0:15:51.276 --> 0:15:56.356 to my hospital room with his paper bag of sandwiches 0:15:56.436 --> 0:16:00.036 and sitting by my bed and talking to me, not 0:16:00.196 --> 0:16:03.516 about my latest biopsy results or blood counts, but he 0:16:03.516 --> 0:16:07.156 would ask me what I majored in in college, what 0:16:07.396 --> 0:16:11.756 my most daring dreams were, what I wanted to do 0:16:12.236 --> 0:16:17.436 after all of this was over. And it always confused 0:16:17.516 --> 0:16:20.956 me because I felt like, he's this busy man, you know, 0:16:20.996 --> 0:16:24.396 why is he doing this? And I realized now that 0:16:24.676 --> 0:16:29.756 he was reminding me of who I was outside of 0:16:29.796 --> 0:16:35.716 these hospital rooms and trying to keep that sense of 0:16:35.876 --> 0:16:37.716 hope alive for me. 0:16:38.716 --> 0:16:41.876 Yeah, it sounds like you were forced to stare death 0:16:41.916 --> 0:16:46.956 in the face, and I'm wondering whether it shifted your 0:16:46.956 --> 0:16:50.796 perspective on anything or taught you something about yourself. 0:16:51.676 --> 0:16:57.756 Yeah, you know, I think the experience of confronting death 0:16:58.756 --> 0:17:03.396 strangely can have a clarifying effect, all the artifice got 0:17:03.516 --> 0:17:10.876 stripped away, and for me, I've felt my self rerouting 0:17:11.836 --> 0:17:15.796 my priorities. What had felt important even just a few 0:17:15.796 --> 0:17:20.796 months before no longer mattered. It didn't matter that I'd 0:17:20.836 --> 0:17:26.156 strived and strived and strived. It didn't matter that I 0:17:26.356 --> 0:17:29.836 had all of these ambitions, or that I had been 0:17:29.836 --> 0:17:35.996 a hard worker. What mattered to me was simple. I 0:17:36.036 --> 0:17:40.516 wanted to spend as much time with my loved ones 0:17:40.556 --> 0:17:44.916 as I could, and I think what it did for 0:17:44.956 --> 0:17:49.716 me was that it released me from any sense of 0:17:49.876 --> 0:17:53.196 self imposed or external expectation. For the first time in 0:17:53.196 --> 0:17:57.236 my life, I was free of expectation for the first 0:17:57.236 --> 0:18:01.356 time in my life. My parents were overjoyed and would 0:18:01.396 --> 0:18:03.796 pat me on the back if I managed to walk 0:18:04.236 --> 0:18:07.596 half a block to come home. That's how low the 0:18:07.636 --> 0:18:11.516 bar was set for me. And what surprised me is 0:18:11.516 --> 0:18:15.796 that I felt a real sense of liberation to do 0:18:16.036 --> 0:18:20.116 the things I wanted to do simply because they nourished me, 0:18:20.196 --> 0:18:22.916 because they felt life giving, and not because they were 0:18:22.916 --> 0:18:26.396 the things I thought I should be doing. And so, 0:18:26.556 --> 0:18:30.356 for the first time in my life, I began creating 0:18:30.636 --> 0:18:34.876 entirely for myself. I began keeping a journal that I 0:18:34.956 --> 0:18:38.636 used as a sort of reporter's notebook, where I would 0:18:38.956 --> 0:18:44.236 you write about the different patients I was befriending, you know, 0:18:44.356 --> 0:18:47.556 the guy down the hall who was trying to encourage 0:18:47.596 --> 0:18:51.756 everyone to mount a hunger strike because our meal trace 0:18:51.876 --> 0:18:55.676 kept arriving with the food still frozen. I wrote about 0:18:56.236 --> 0:19:01.996 the nurses and the gossip that i'd overhear by their station. 0:19:02.556 --> 0:19:06.476 The real life Anatomy flat life, exactly exactly. 0:19:06.676 --> 0:19:09.956 I once asked a young resident if her life resembled 0:19:10.036 --> 0:19:12.076 the cast of Grace Anatomy in any way, and she 0:19:12.156 --> 0:19:16.196 told me that everyone slept around just as much, but 0:19:16.396 --> 0:19:20.396 that everyone was also far less attractive, which was fun 0:19:20.396 --> 0:19:22.356 for me because I got to sort of project all 0:19:22.396 --> 0:19:26.636 sorts of steamy plot twists to everyone coming into my room. 0:19:28.356 --> 0:19:30.876 But I was doing things for the first time in 0:19:30.916 --> 0:19:38.396 my life without any sense of it leading to something, 0:19:38.796 --> 0:19:42.596 without worrying about productivity or output. 0:19:44.076 --> 0:19:44.436 Wow. 0:19:44.556 --> 0:19:49.396 That is so powerful, and it just strikes me as 0:19:50.156 --> 0:19:52.316 I look at my own life. I don't think I've 0:19:52.316 --> 0:19:54.476 ever experienced a period of my life in which I 0:19:54.516 --> 0:19:59.116 did not feel almost an obsessive need to be productive 0:19:59.396 --> 0:20:00.796 and meet expectations. 0:20:01.196 --> 0:20:03.556 I think most of us feel that way. That was 0:20:03.556 --> 0:20:07.036 something I also hadn't experienced, probably from the time that 0:20:07.116 --> 0:20:10.196 I was like four or five years old, when I 0:20:10.236 --> 0:20:14.596 can make a big, glorious mess with finger paints and 0:20:14.956 --> 0:20:17.916 revel in the mass and not worry about if it 0:20:17.996 --> 0:20:22.396 was any good. And I think, you know, shedding that 0:20:22.596 --> 0:20:27.036 pressure to do something well allowed me to play and 0:20:27.076 --> 0:20:31.156 to experiment with different forms in a way that I 0:20:31.196 --> 0:20:34.276 wouldn't have allowed myself. I wouldn't have allowed myself the 0:20:34.396 --> 0:20:38.116 time to just try things for the health trying them. Yeah, 0:20:38.156 --> 0:20:41.436 to read things because they piqued my interests and I 0:20:41.476 --> 0:20:46.356 didn't know why. And I had never had that luxury 0:20:46.396 --> 0:20:50.076 of time, which is an irony, because of course, you know, 0:20:50.276 --> 0:20:56.396 time felt more precious and fleeting than ever before. And 0:20:56.436 --> 0:21:01.516 in writing in that way, I wasn't concerned with writing 0:21:02.236 --> 0:21:08.196 well or beautifully or even gramatically. I was really interested 0:21:08.516 --> 0:21:14.636 in pushing myself to dig for the truth beneath the truth, 0:21:14.756 --> 0:21:18.156 beneath the truth. I wasn't trying to impress anyone. I 0:21:18.236 --> 0:21:23.996 wasn't trying to sound smarter than I was to imitate anyone. 0:21:24.316 --> 0:21:28.636 I was just following the threat of curiosity wherever it 0:21:28.716 --> 0:21:32.756 led me. And so because I was so mired an uncertainty. 0:21:32.916 --> 0:21:35.996 I had no idea what the next couple of hours 0:21:35.996 --> 0:21:38.476 were going to bring, let alone the next day or 0:21:38.556 --> 0:21:43.916 the next week. And because initially that writing was just 0:21:43.996 --> 0:21:47.876 for myself, for the first time in my life, I 0:21:47.956 --> 0:21:53.636 felt like I had finally found my voice. 0:21:53.996 --> 0:21:56.236 We'll be back in a moment. With a slight change 0:21:56.236 --> 0:22:12.316 of plans against the odds, and after months of grueling 0:22:12.356 --> 0:22:17.836 chemotherapy and extreme isolation, Suleka's clinical trial was deemed a success. 0:22:18.916 --> 0:22:20.996 The next step in her treatment would be a bone 0:22:21.036 --> 0:22:25.236 marrow transplant, a high risk, complex procedure and her only 0:22:25.356 --> 0:22:30.516 chance at survival. As her transplant approached, she began reflecting 0:22:30.636 --> 0:22:33.516 on what exactly she wanted to say about her experience 0:22:33.556 --> 0:22:34.156 with cancer. 0:22:35.196 --> 0:22:38.796 I began to read every illness narrative that I could 0:22:38.796 --> 0:22:42.516 get my hands on, but so many of them, the 0:22:42.636 --> 0:22:48.996 beautifully written and wrenching and profound, didn't speak to me, 0:22:49.116 --> 0:22:52.116 because more often than not, they were written from the 0:22:52.196 --> 0:22:55.756 perspective of someone who had survived. And I started to 0:22:55.796 --> 0:22:59.036 notice that there was this kind of hero's journey arc 0:22:59.436 --> 0:23:03.116 to illness narratives, where you return from the thing that 0:23:03.196 --> 0:23:08.276 nearly killed you better and braver and stronger for what 0:23:08.316 --> 0:23:13.076 you've been through, and that couldn't have applied less to me. 0:23:13.476 --> 0:23:17.716 I was terrified, I was struggling, I was isolated, and 0:23:17.756 --> 0:23:20.436 I wanted to put all of that into ink. And 0:23:20.516 --> 0:23:23.196 so what I began to do was to write about 0:23:23.196 --> 0:23:27.316 the very things that felt impossible to talk about. I 0:23:27.356 --> 0:23:33.196 wrote about the infertility caused by my cancer treatments. I 0:23:33.236 --> 0:23:39.036 wrote about the experience of falling in love while falling sick. 0:23:39.156 --> 0:23:42.956 I wrote about the in betweenness of young adulthood. I 0:23:42.996 --> 0:23:47.996 wrote about navigating our healthcare system and all of its complexities. 0:23:48.036 --> 0:23:51.516 I wrote about the sense of guilt and the feeling 0:23:51.756 --> 0:23:56.156 of being a burden that so often comes when you're 0:23:56.636 --> 0:24:01.676 acutely sick. I wrote about all of it. Tony Morrison said, 0:24:02.116 --> 0:24:05.476 if you want to read a book and it doesn't exist, 0:24:05.756 --> 0:24:08.676 then you must write it. And so I think, in 0:24:08.716 --> 0:24:11.796 my own small way, that was my version of doing that. 0:24:12.556 --> 0:24:18.356 And so I decided, because I was pretty limited within 0:24:18.436 --> 0:24:22.436 my options, to start a blog, a really simple blog, 0:24:22.756 --> 0:24:26.676 and it felt so good to have a job that 0:24:26.796 --> 0:24:32.036 I could do other than merely being a patient. And 0:24:32.236 --> 0:24:36.956 to my great surprise, the blog was passed around and 0:24:36.996 --> 0:24:40.636 the journalism professor of mine sent it along to an 0:24:40.716 --> 0:24:42.636 editor at the New York Times, and she called me 0:24:42.756 --> 0:24:46.116 up and asked if I might want to publish an essay. 0:24:46.916 --> 0:24:51.996 And because I was facing the possibility of imminent death, 0:24:52.436 --> 0:24:55.756 I shot my shot and I said, I don't want 0:24:55.756 --> 0:24:58.716 to write an essay. What I'd like to write is 0:24:58.756 --> 0:25:03.356 a weekly column written from the trenches of that uncertainty 0:25:03.476 --> 0:25:06.236 where you don't know how the story is going to end. 0:25:06.996 --> 0:25:10.876 And I went on and on and on, and at 0:25:10.876 --> 0:25:14.716 the end of it, to my great surprise and then 0:25:14.876 --> 0:25:19.316 terror her, she said, okay, we will try it for 0:25:19.356 --> 0:25:21.996 a couple of installments and see how it goes. And 0:25:22.156 --> 0:25:25.156 I had never been published before, I never had a byline, 0:25:25.196 --> 0:25:28.636 and certainly not in a place like the New York Times. 0:25:28.876 --> 0:25:34.836 And what began as elation immediately turned to a sense of, 0:25:35.196 --> 0:25:36.516 Oh shit, how am I. 0:25:36.556 --> 0:25:37.596 Going to pull this off? 0:25:39.436 --> 0:25:42.836 What did it feel like to put these essays this 0:25:42.916 --> 0:25:45.276 call them out into the world while you were so 0:25:45.596 --> 0:25:49.316 unbelievably sick and going through the bone marrow transplant. 0:25:50.316 --> 0:25:54.756 It was extraordinarily challenging, in large part because I had 0:25:54.836 --> 0:26:00.556 new limitations. I was exhausted, I was physically ill in 0:26:00.636 --> 0:26:04.916 ways that were unpredictable, and so I would work in 0:26:04.956 --> 0:26:09.756 these short ten minute installments throughout the day and take 0:26:09.836 --> 0:26:15.476 naps in between. And it was slow and plotting and frustrating, 0:26:15.476 --> 0:26:20.276 and of course through many moments where I felt, you know, 0:26:20.996 --> 0:26:26.396 this deep sense of anger at how different my body was, 0:26:26.756 --> 0:26:30.476 and I felt the sense of my ambition, you know, 0:26:30.716 --> 0:26:34.996 bumping up against my limitations. But it was also an 0:26:35.116 --> 0:26:40.836 exercise for me, a first lesson really in not only 0:26:40.876 --> 0:26:46.076 accepting those limitations, but trying to find creative workarounds. And 0:26:46.356 --> 0:26:49.516 it occurred to me as I started to look to 0:26:49.916 --> 0:26:54.476 examples throughout history of artists and writers who found themselves 0:26:54.476 --> 0:27:02.356 in similar situations, that the limitations could actually be creatively 0:27:02.436 --> 0:27:07.276 generative themselves. So I was obsessed with Free to Callo, 0:27:07.596 --> 0:27:11.156 who had a similar age, had, of course, found herself 0:27:11.356 --> 0:27:17.476 in bed and began making these beautiful, heartbreaking self portraits 0:27:18.236 --> 0:27:20.316 that led to her becoming one of the most well 0:27:20.356 --> 0:27:24.996 known artists throughout time. I read Sarah Manguso, I read 0:27:25.076 --> 0:27:30.716 Lucy Grayley, and I began to get curious about how 0:27:31.596 --> 0:27:36.636 my limitations will challenging were actually twisting my mind out 0:27:36.636 --> 0:27:40.076 of its usual rut. And I began to realize that, really, 0:27:40.516 --> 0:27:43.876 you know, survival is its own kind of creative act. 0:27:44.436 --> 0:27:48.356 When you have chemo sores in your mouth and throat 0:27:48.396 --> 0:27:50.676 that make it impossible to speak, you have to find 0:27:50.756 --> 0:27:54.836 new ways to communicate. When you're confined to a bed, 0:27:55.436 --> 0:28:01.436 you have to use your imagination to travel when you 0:28:01.516 --> 0:28:07.596 can't move, you have to find new ways of entertaining yourself. 0:28:07.916 --> 0:28:11.476 And so I began to get curious about that and 0:28:12.316 --> 0:28:14.596 open to whatever it was that emerged. 0:28:16.076 --> 0:28:18.676 And what was the response like to the column. 0:28:18.876 --> 0:28:22.476 The column, which was called Life Interrupted, launched during that 0:28:22.516 --> 0:28:25.956 first week in the Bone Mirror transplant unit, and it 0:28:26.076 --> 0:28:29.476 was such a bizarre moment of contrast because I was 0:28:30.076 --> 0:28:36.396 sicker than I'd ever been. And the morning after the 0:28:36.436 --> 0:28:41.956 column went live, I opened my inbox and found hundreds 0:28:42.036 --> 0:28:47.236 and hundreds of letters and notes from people all across 0:28:47.276 --> 0:28:52.636 the world. And after being so profoundly isolated for a year, 0:28:52.716 --> 0:28:56.876 it was like this portal had opened onto the rest 0:28:56.876 --> 0:28:59.156 of the world, and I felt a sense of connection 0:28:59.996 --> 0:29:04.036 that I hadn't felt before. I heard from a young 0:29:04.116 --> 0:29:07.716 man down the hallway from me in the transplant unit 0:29:07.756 --> 0:29:09.956