1 00:00:14,956 --> 00:00:15,436 Speaker 1: Pushkin. 2 00:00:30,716 --> 00:00:37,356 Speaker 2: That was really the moment that I realized whatever future 3 00:00:37,516 --> 00:00:41,276 Speaker 2: I'd imagine for myself not only wasn't going to happen 4 00:00:41,556 --> 00:00:44,076 Speaker 2: in the way that I'd planned, but that I might 5 00:00:44,116 --> 00:00:48,116 Speaker 2: not get to exist in the future at all. 6 00:00:48,236 --> 00:00:51,956 Speaker 1: Suleka Jawad was diagnosed with an aggressive form of leukemia 7 00:00:52,076 --> 00:00:55,156 Speaker 1: when she was twenty two years old. As she faced 8 00:00:55,196 --> 00:00:58,636 Speaker 1: her mortality, she felt clarity about how exactly she wanted 9 00:00:58,676 --> 00:00:59,436 Speaker 1: to spend her time. 10 00:01:00,316 --> 00:01:04,516 Speaker 2: I felt a real sense of liberation to do the 11 00:01:04,516 --> 00:01:08,396 Speaker 2: things I wanted to do simply because they nourished me, 12 00:01:08,476 --> 00:01:11,196 Speaker 2: because they felt life giving, and not because they were 13 00:01:11,196 --> 00:01:14,236 Speaker 2: the things I thought I should be doing. And so 14 00:01:14,396 --> 00:01:18,196 Speaker 2: for the first time in my life, I began creating 15 00:01:18,476 --> 00:01:19,716 Speaker 2: entirely for myself. 16 00:01:24,396 --> 00:01:27,836 Speaker 1: On today's episode, why Survival is its own kind of 17 00:01:27,916 --> 00:01:32,756 Speaker 1: creative act, I'm Maya Shunker and this is a slight 18 00:01:32,836 --> 00:01:35,476 Speaker 1: change of plans, a show about who we are and 19 00:01:35,516 --> 00:01:47,916 Speaker 1: who we become in the face of a big change. Okay, 20 00:01:48,036 --> 00:01:53,036 Speaker 1: so full confession. I'm obsessed with Suleka Jawad. Her mind 21 00:01:53,076 --> 00:01:55,716 Speaker 1: and heart speak to me in a way few people do. 22 00:01:56,796 --> 00:01:59,556 Speaker 1: I followed her writing from Afar over the years, and 23 00:01:59,596 --> 00:02:03,516 Speaker 1: I found her honesty so startling at times, it's taken 24 00:02:03,556 --> 00:02:07,756 Speaker 1: my breath away. Suleka is unafraid to tackle some of 25 00:02:07,756 --> 00:02:11,436 Speaker 1: the hardest questions we fine as humans. When she first 26 00:02:11,436 --> 00:02:14,356 Speaker 1: started working on her memoir, a friend told her about 27 00:02:14,356 --> 00:02:16,796 Speaker 1: a saying they'd heard. If you want to write a 28 00:02:16,836 --> 00:02:19,556 Speaker 1: good memoir, share what you don't want other people to 29 00:02:19,556 --> 00:02:22,636 Speaker 1: know about you. If you want to write a great memoir, 30 00:02:23,116 --> 00:02:26,876 Speaker 1: share what you don't want to know about yourself. Suleka 31 00:02:27,236 --> 00:02:31,676 Speaker 1: wrote a great memoir. The title of her book, Between 32 00:02:31,716 --> 00:02:35,316 Speaker 1: Two Kingdoms, a Memoir of a Life Interrupted, is a 33 00:02:35,356 --> 00:02:39,876 Speaker 1: nod to the writer Susan Sontagg. Sontag wrote that everyone 34 00:02:39,876 --> 00:02:43,436 Speaker 1: who is born holds dual citizenship in the Kingdom of 35 00:02:43,476 --> 00:02:47,036 Speaker 1: the well and in the Kingdom of the sick. Suleka 36 00:02:47,076 --> 00:02:50,196 Speaker 1: writes about her experience in both these kingdoms and the 37 00:02:50,236 --> 00:02:54,676 Speaker 1: difficulty of navigating the space that lies between them. Her 38 00:02:54,716 --> 00:02:58,956 Speaker 1: story begins in twenty ten. She just graduated from Princeton 39 00:02:59,076 --> 00:03:01,876 Speaker 1: University and had big dreams for the road ahead. 40 00:03:02,876 --> 00:03:08,036 Speaker 2: So much of my sense of self worth, like most 41 00:03:08,516 --> 00:03:13,076 Speaker 2: Type A strivers, was wrapped up in my plans for 42 00:03:13,116 --> 00:03:17,396 Speaker 2: the future, and I had all kinds of one year 43 00:03:17,716 --> 00:03:21,436 Speaker 2: and five year and ten year plans, and I had 44 00:03:21,716 --> 00:03:26,356 Speaker 2: a dream of becoming a war correspondent. I wanted to 45 00:03:27,556 --> 00:03:32,556 Speaker 2: report from North Africa, where I'm originally from, where my 46 00:03:32,756 --> 00:03:35,996 Speaker 2: entire family currently lives. But also, like a lot of 47 00:03:36,036 --> 00:03:38,836 Speaker 2: twenty two year olds, I had no idea what the 48 00:03:38,876 --> 00:03:41,516 Speaker 2: future actually had in store for me. I had lots 49 00:03:41,556 --> 00:03:45,436 Speaker 2: of daydreams and plans that I didn't really know who 50 00:03:45,476 --> 00:03:49,116 Speaker 2: I buys met. And so what I decided to do 51 00:03:49,316 --> 00:03:52,236 Speaker 2: was to take a job as a parent legal and 52 00:03:52,916 --> 00:03:56,756 Speaker 2: a law firm in Paris, and to take the time 53 00:03:56,796 --> 00:04:00,396 Speaker 2: I needed to find my way. And you know, there 54 00:04:00,516 --> 00:04:04,156 Speaker 2: was this sense of endless time, as there often is 55 00:04:04,516 --> 00:04:07,116 Speaker 2: when you're young. Time to figure out what you want, 56 00:04:07,476 --> 00:04:10,636 Speaker 2: time to figure out who who you want to become, 57 00:04:10,716 --> 00:04:15,116 Speaker 2: and how to plot the distance between you and that person. 58 00:04:15,836 --> 00:04:20,396 Speaker 2: And so I was brimming with joy, bringing with a 59 00:04:20,396 --> 00:04:25,556 Speaker 2: little bit of anxiety about finding my way forward, but 60 00:04:26,116 --> 00:04:30,116 Speaker 2: it was really this sense of being on the edge 61 00:04:30,396 --> 00:04:33,876 Speaker 2: of something exciting. Yeah. 62 00:04:33,956 --> 00:04:36,756 Speaker 1: So you had had worrying health symptoms for some time, 63 00:04:37,236 --> 00:04:40,156 Speaker 1: and when you were in Paris things got worse. Can 64 00:04:40,196 --> 00:04:42,876 Speaker 1: you tell me about how your health was starting to fail? 65 00:04:43,996 --> 00:04:49,156 Speaker 2: It began with an itch, this relentless, maddening itch on 66 00:04:49,196 --> 00:04:52,876 Speaker 2: my skin that popped up during my senior year of college, 67 00:04:52,916 --> 00:04:59,316 Speaker 2: and followed by that was fatigue and frequent infections and viruses. 68 00:04:59,356 --> 00:05:02,356 Speaker 2: But every single time I went to a doctor, they 69 00:05:02,356 --> 00:05:05,676 Speaker 2: would look at whatever specific ailment I was coming in, 70 00:05:06,316 --> 00:05:09,596 Speaker 2: treat that, and then send me home. And so it 71 00:05:09,676 --> 00:05:12,876 Speaker 2: took about a year and a half until I was 72 00:05:12,916 --> 00:05:15,716 Speaker 2: about six months into my time in Paris, and I 73 00:05:15,756 --> 00:05:20,596 Speaker 2: had grown so pale that my skin looked almost translucent, 74 00:05:20,796 --> 00:05:24,956 Speaker 2: and I was so exhausted that I was drinking, you know, 75 00:05:25,076 --> 00:05:28,396 Speaker 2: up to eight espressos every day to get through my 76 00:05:28,596 --> 00:05:31,596 Speaker 2: job at the law firm, and spending my lunch hour 77 00:05:31,916 --> 00:05:35,796 Speaker 2: napping in the office closet. That it began to occur 78 00:05:35,876 --> 00:05:40,356 Speaker 2: to me that something was deeply wrong. But as is 79 00:05:40,756 --> 00:05:45,676 Speaker 2: often the case, especially for young people, especially for women, 80 00:05:46,556 --> 00:05:52,756 Speaker 2: the challenge of getting an actual diagnosis proved to be 81 00:05:53,076 --> 00:05:56,796 Speaker 2: so much harder than I possibly could have imagined. You know, 82 00:05:56,876 --> 00:06:03,516 Speaker 2: we have so many examples throughout history where a woman's 83 00:06:03,596 --> 00:06:08,956 Speaker 2: physical affliction is attributed to their mind, to a sense 84 00:06:08,956 --> 00:06:13,916 Speaker 2: of hysteria, and that's very much how I felt. I 85 00:06:14,036 --> 00:06:17,196 Speaker 2: kept saying, I think something is wrong. I've never been 86 00:06:17,236 --> 00:06:20,036 Speaker 2: sick in my life. I've never even broken a bone, 87 00:06:20,156 --> 00:06:23,716 Speaker 2: and I can barely function. I so often would find 88 00:06:23,756 --> 00:06:28,916 Speaker 2: myself on an exam table, feeling like I wasn't being 89 00:06:28,956 --> 00:06:33,116 Speaker 2: taken seriously, feeling like I wasn't being believed. A doctor 90 00:06:33,756 --> 00:06:38,236 Speaker 2: I saw prescribed anti anxiety medications to me. Another that 91 00:06:38,316 --> 00:06:41,356 Speaker 2: hospitalized me for a week and ran every test they 92 00:06:41,356 --> 00:06:45,276 Speaker 2: could think of release me with a discharge of burnout syndrome. 93 00:06:45,996 --> 00:06:50,196 Speaker 2: And I felt this sense of intimidation that I think 94 00:06:50,356 --> 00:06:53,676 Speaker 2: many of us have felt when we're in a doctor's office, 95 00:06:54,116 --> 00:06:57,636 Speaker 2: the sense that they had the medical degrees, not me. 96 00:06:57,876 --> 00:07:03,676 Speaker 2: Who was I to question their judgment? And so at 97 00:07:03,676 --> 00:07:08,196 Speaker 2: the end of this confusing year and a half, ultimately 98 00:07:08,556 --> 00:07:11,596 Speaker 2: I found my self in an emergency room in Paris 99 00:07:12,076 --> 00:07:14,996 Speaker 2: with blood counts so low that I had to immediately 100 00:07:14,996 --> 00:07:17,676 Speaker 2: get on a plane back home to Upstate New York 101 00:07:17,716 --> 00:07:20,676 Speaker 2: because if they dropped any lower, I wasn't going to 102 00:07:20,716 --> 00:07:24,436 Speaker 2: be able to fly at all. And it was shortly 103 00:07:24,476 --> 00:07:29,956 Speaker 2: thereafter that I learned I had been diagnosed with an 104 00:07:29,956 --> 00:07:34,956 Speaker 2: aggressive form of leukemia. And it was one of those 105 00:07:35,116 --> 00:07:41,996 Speaker 2: bifurcating moments in a life where even though at twenty 106 00:07:42,036 --> 00:07:45,996 Speaker 2: two I couldn't really wrap my head around what this 107 00:07:46,076 --> 00:07:49,356 Speaker 2: illness meant for me. I didn't have friends who had 108 00:07:49,396 --> 00:07:54,116 Speaker 2: suffered from cancer, and I didn't really have anything to 109 00:07:54,796 --> 00:07:56,556 Speaker 2: sort of give me an indication of what it was 110 00:07:56,596 --> 00:08:01,796 Speaker 2: going to be like. But I knew immediately that whatever 111 00:08:02,436 --> 00:08:09,596 Speaker 2: sense of innocence I've had had been buried and everything 112 00:08:09,716 --> 00:08:13,116 Speaker 2: was going to be different from there on out. 113 00:08:14,116 --> 00:08:16,916 Speaker 1: What were you told about your prognosis at the time, 114 00:08:17,116 --> 00:08:21,716 Speaker 1: and what was it like to leave behind all of 115 00:08:21,756 --> 00:08:24,436 Speaker 1: those dreams and hopes that you had been carrying, just 116 00:08:25,236 --> 00:08:27,556 Speaker 1: you know, weeks prior about what your future was going 117 00:08:27,596 --> 00:08:28,036 Speaker 1: to look like. 118 00:08:29,196 --> 00:08:35,396 Speaker 2: So initially I did all the googling that they tell 119 00:08:35,436 --> 00:08:37,876 Speaker 2: you not to do, and I knew from the very 120 00:08:37,916 --> 00:08:42,116 Speaker 2: start that my prognosis was not good, that the cards 121 00:08:42,356 --> 00:08:45,996 Speaker 2: were stacked against me. They told me I had about 122 00:08:45,996 --> 00:08:51,116 Speaker 2: a thirty five percent chance of long term survival. But 123 00:08:51,156 --> 00:08:56,116 Speaker 2: when I entered the hospital, I still had a kind 124 00:08:56,156 --> 00:08:59,836 Speaker 2: of naivete about what this whole experience is going to 125 00:08:59,876 --> 00:09:04,116 Speaker 2: be like. I packed a suitcase full of books like 126 00:09:04,436 --> 00:09:07,436 Speaker 2: War and Peace, and I cheerfully announced my parents that 127 00:09:07,516 --> 00:09:11,156 Speaker 2: I was going to use this summer in the hospital 128 00:09:11,356 --> 00:09:14,316 Speaker 2: to read through the rest of the Western canon. I 129 00:09:14,316 --> 00:09:15,956 Speaker 2: thought I was going to write a book. I thought 130 00:09:15,956 --> 00:09:17,716 Speaker 2: it was going to do all these things, and of 131 00:09:17,756 --> 00:09:20,476 Speaker 2: course I didn't end up doing any of those things. 132 00:09:20,756 --> 00:09:28,436 Speaker 2: And it was a slow crushing realization that to hold 133 00:09:28,476 --> 00:09:31,756 Speaker 2: on to the person I'd been, and all of the 134 00:09:31,876 --> 00:09:35,876 Speaker 2: dreams and plans that that person had, was only going 135 00:09:35,916 --> 00:09:41,516 Speaker 2: to be a recipe for defeat and discouragement. And by 136 00:09:41,556 --> 00:09:45,036 Speaker 2: the end of that summer, I had lost about forty pounds. 137 00:09:45,076 --> 00:09:47,876 Speaker 2: I had lost on my hair and my eyelashes, my eyebrows. 138 00:09:48,796 --> 00:09:51,956 Speaker 2: But worse than that, I had learned that the standard 139 00:09:52,356 --> 00:09:55,796 Speaker 2: chemotherapy I'd been doing all summer not only hadn't worked, 140 00:09:55,956 --> 00:10:00,076 Speaker 2: but that my leukemia was even more aggressive, and that 141 00:10:00,236 --> 00:10:03,396 Speaker 2: my only option was going to be a clinical trial. 142 00:10:04,716 --> 00:10:06,516 Speaker 1: You went from assuming that you were going to have 143 00:10:06,556 --> 00:10:10,036 Speaker 1: this relatively short stay, I mean not just so like 144 00:10:10,116 --> 00:10:12,916 Speaker 1: in your case, but like highly productive reading war and 145 00:10:13,036 --> 00:10:17,316 Speaker 1: peace stay, which by the way, will never ever be 146 00:10:17,396 --> 00:10:20,956 Speaker 1: in the cards for me ever, no matter what illnesses 147 00:10:20,996 --> 00:10:24,716 Speaker 1: I face. I'm more in the mindy Kaling, you know, 148 00:10:25,196 --> 00:10:29,556 Speaker 1: memoirs face. And then and then you find out this 149 00:10:29,596 --> 00:10:32,596 Speaker 1: devastating news, which is okay, you're going to have to 150 00:10:32,676 --> 00:10:36,036 Speaker 1: enter this clinical trial. What was it like to have 151 00:10:37,596 --> 00:10:39,436 Speaker 1: the goalpost change like that. 152 00:10:40,196 --> 00:10:43,676 Speaker 2: I was devastated. I remember it so clearly. It was 153 00:10:43,716 --> 00:10:51,436 Speaker 2: the morning of my twenty third birthday, and I had 154 00:10:51,716 --> 00:10:55,916 Speaker 2: packed up everything in my room because I wanted so 155 00:10:56,076 --> 00:10:59,476 Speaker 2: badly to be discharged. I had taken down the posters 156 00:10:59,516 --> 00:11:04,716 Speaker 2: and the getball cards. And the hope from the very 157 00:11:04,796 --> 00:11:09,516 Speaker 2: beginning was that I would get into remission. But theallenge 158 00:11:09,556 --> 00:11:13,316 Speaker 2: was that I not only couldn't get into remission, but 159 00:11:13,516 --> 00:11:18,436 Speaker 2: my leukemia was running rampant throughout my entire body. I 160 00:11:18,476 --> 00:11:24,596 Speaker 2: felt when I received that news, the scaffolding inside of 161 00:11:24,636 --> 00:11:30,276 Speaker 2: me crumble. It felt like a breach of contract with 162 00:11:30,356 --> 00:11:33,756 Speaker 2: the natural order of things, because youth and health are 163 00:11:33,796 --> 00:11:39,916 Speaker 2: supposed to go hand in hand. And that began a 164 00:11:40,036 --> 00:11:45,076 Speaker 2: very different chapter where I really retreated into myself. I 165 00:11:45,156 --> 00:11:50,076 Speaker 2: had this window overlooking Central Park from my hospital room, 166 00:11:50,116 --> 00:11:53,556 Speaker 2: which was a great privilege to have landed in this 167 00:11:53,676 --> 00:11:58,676 Speaker 2: room by chance. And I remember closing the blinds because 168 00:11:58,716 --> 00:12:02,436 Speaker 2: what had once brought me comfort to be able, you know, 169 00:12:02,596 --> 00:12:07,196 Speaker 2: to see the world continuing to move, suddenly felt like 170 00:12:07,676 --> 00:12:14,956 Speaker 2: a reminder that whatever future I'd imagine for myself, not 171 00:12:15,036 --> 00:12:18,596 Speaker 2: only wasn't going to happen in the way that I'd planned, 172 00:12:19,156 --> 00:12:21,356 Speaker 2: but that I might not get to exist in the 173 00:12:21,396 --> 00:12:27,396 Speaker 2: future at all. And so for the next couple of months, 174 00:12:27,796 --> 00:12:34,876 Speaker 2: I sank into a pretty deep well of depression. I 175 00:12:34,956 --> 00:12:40,876 Speaker 2: no longer wanted to have visits from friends, I stopped reading, 176 00:12:40,996 --> 00:12:46,716 Speaker 2: stopped making plans. I instead filled my days by trying 177 00:12:46,796 --> 00:12:50,356 Speaker 2: to set the world record for the number of Gray's 178 00:12:50,396 --> 00:12:56,276 Speaker 2: Anatomy episodes watched consecutively. And I was angry. I remember, 179 00:12:56,516 --> 00:13:01,316 Speaker 2: you know, being told stories of cancer survivors who had 180 00:13:01,356 --> 00:13:08,596 Speaker 2: gone on to do extraordinary things, and feeling such rage 181 00:13:09,196 --> 00:13:14,036 Speaker 2: at the idea that anything about what I was living 182 00:13:14,676 --> 00:13:18,876 Speaker 2: could be useful, could be turned into anything other than 183 00:13:18,916 --> 00:13:22,396 Speaker 2: what it was, which was a deep sense of isolation 184 00:13:22,836 --> 00:13:27,556 Speaker 2: and a deep sense of fear about what was to come. 185 00:13:28,316 --> 00:13:31,236 Speaker 1: Yeah, when I told you you'd have to enroll in 186 00:13:31,236 --> 00:13:34,916 Speaker 1: this clinical trial, what was the chance of a successful outcome? 187 00:13:35,916 --> 00:13:39,716 Speaker 2: I had no idea, And that's what made it especially challenging. 188 00:13:40,116 --> 00:13:43,716 Speaker 2: The clinical trial that I enrolled in was a phase 189 00:13:43,756 --> 00:13:48,156 Speaker 2: two clinical trial, meaning they not only didn't know if 190 00:13:48,196 --> 00:13:50,996 Speaker 2: it was safe, but they had no idea if it 191 00:13:51,036 --> 00:13:56,436 Speaker 2: was going to be effective. Okay, and It really required 192 00:13:56,516 --> 00:13:59,236 Speaker 2: what I can only describe as a leap of faith 193 00:13:59,796 --> 00:14:05,156 Speaker 2: to submit my body, to submit my family to what 194 00:14:05,356 --> 00:14:09,876 Speaker 2: ended up being a harrowing and grueling experience. 195 00:14:10,556 --> 00:14:15,196 Speaker 1: Yeah, I do wonder whether it was ever a question 196 00:14:15,236 --> 00:14:17,076 Speaker 1: of whether you were going to go through with the treatment. 197 00:14:17,276 --> 00:14:20,756 Speaker 1: I could easily imagine myself saying, like, please, everyone I love, 198 00:14:21,276 --> 00:14:24,876 Speaker 1: spare me this pain and suffering, Like I'd rather just go. 199 00:14:26,356 --> 00:14:30,196 Speaker 2: We had so many difficult conversations as a family, especially 200 00:14:30,236 --> 00:14:33,836 Speaker 2: because the side effects of the clinical trial were so 201 00:14:33,956 --> 00:14:39,476 Speaker 2: brutal that they became nearly lethal on a number of vacations, 202 00:14:39,516 --> 00:14:43,076 Speaker 2: and I ended up spending about four out of the 203 00:14:43,116 --> 00:14:48,236 Speaker 2: next eight months and isolation in the hospital, warding off 204 00:14:48,476 --> 00:14:53,836 Speaker 2: everything from septic shock to life threatening infections and fevers. 205 00:14:54,316 --> 00:14:59,876 Speaker 2: And that was the impossible Sophie's choice. Is this going 206 00:14:59,916 --> 00:15:02,396 Speaker 2: to kill me? Is this going to save me? But 207 00:15:02,436 --> 00:15:04,956 Speaker 2: I would say things to my parents sometimes when I 208 00:15:04,996 --> 00:15:08,396 Speaker 2: felt I was really in a low down place, that 209 00:15:08,556 --> 00:15:12,436 Speaker 2: you know, maybe I was better off stopping the clinical trial, 210 00:15:14,356 --> 00:15:18,156 Speaker 2: doing some kind of make a wish bucketless trip to 211 00:15:18,276 --> 00:15:22,436 Speaker 2: some tropical island and smoking pot and doing whatever else 212 00:15:22,476 --> 00:15:26,396 Speaker 2: it was that I wanted to do, And more than 213 00:15:26,436 --> 00:15:30,716 Speaker 2: anything to really savor whatever time I had left with them, 214 00:15:30,876 --> 00:15:35,756 Speaker 2: with my friends, with my loved ones, rather than torturing 215 00:15:35,796 --> 00:15:41,636 Speaker 2: myself with these treatments. But I had this amazing oncologist, 216 00:15:41,996 --> 00:15:46,596 Speaker 2: the late doctor James Holland, who, when I was at 217 00:15:46,636 --> 00:15:51,236 Speaker 2: my most defeated place, began during his lunch hour coming 218 00:15:51,276 --> 00:15:56,356 Speaker 2: to my hospital room with his paper bag of sandwiches 219 00:15:56,436 --> 00:16:00,036 Speaker 2: and sitting by my bed and talking to me, not 220 00:16:00,196 --> 00:16:03,516 Speaker 2: about my latest biopsy results or blood counts, but he 221 00:16:03,516 --> 00:16:07,156 Speaker 2: would ask me what I majored in in college, what 222 00:16:07,396 --> 00:16:11,756 Speaker 2: my most daring dreams were, what I wanted to do 223 00:16:12,236 --> 00:16:17,436 Speaker 2: after all of this was over. And it always confused 224 00:16:17,516 --> 00:16:20,956 Speaker 2: me because I felt like, he's this busy man, you know, 225 00:16:20,996 --> 00:16:24,396 Speaker 2: why is he doing this? And I realized now that 226 00:16:24,676 --> 00:16:29,756 Speaker 2: he was reminding me of who I was outside of 227 00:16:29,796 --> 00:16:35,716 Speaker 2: these hospital rooms and trying to keep that sense of 228 00:16:35,876 --> 00:16:37,716 Speaker 2: hope alive for me. 229 00:16:38,716 --> 00:16:41,876 Speaker 1: Yeah, it sounds like you were forced to stare death 230 00:16:41,916 --> 00:16:46,956 Speaker 1: in the face, and I'm wondering whether it shifted your 231 00:16:46,956 --> 00:16:50,796 Speaker 1: perspective on anything or taught you something about yourself. 232 00:16:51,676 --> 00:16:57,756 Speaker 2: Yeah, you know, I think the experience of confronting death 233 00:16:58,756 --> 00:17:03,396 Speaker 2: strangely can have a clarifying effect, all the artifice got 234 00:17:03,516 --> 00:17:10,876 Speaker 2: stripped away, and for me, I've felt my self rerouting 235 00:17:11,836 --> 00:17:15,796 Speaker 2: my priorities. What had felt important even just a few 236 00:17:15,796 --> 00:17:20,796 Speaker 2: months before no longer mattered. It didn't matter that I'd 237 00:17:20,836 --> 00:17:26,156 Speaker 2: strived and strived and strived. It didn't matter that I 238 00:17:26,356 --> 00:17:29,836 Speaker 2: had all of these ambitions, or that I had been 239 00:17:29,836 --> 00:17:35,996 Speaker 2: a hard worker. What mattered to me was simple. I 240 00:17:36,036 --> 00:17:40,516 Speaker 2: wanted to spend as much time with my loved ones 241 00:17:40,556 --> 00:17:44,916 Speaker 2: as I could, and I think what it did for 242 00:17:44,956 --> 00:17:49,716 Speaker 2: me was that it released me from any sense of 243 00:17:49,876 --> 00:17:53,196 Speaker 2: self imposed or external expectation. For the first time in 244 00:17:53,196 --> 00:17:57,236 Speaker 2: my life, I was free of expectation for the first 245 00:17:57,236 --> 00:18:01,356 Speaker 2: time in my life. My parents were overjoyed and would 246 00:18:01,396 --> 00:18:03,796 Speaker 2: pat me on the back if I managed to walk 247 00:18:04,236 --> 00:18:07,596 Speaker 2: half a block to come home. That's how low the 248 00:18:07,636 --> 00:18:11,516 Speaker 2: bar was set for me. And what surprised me is 249 00:18:11,516 --> 00:18:15,796 Speaker 2: that I felt a real sense of liberation to do 250 00:18:16,036 --> 00:18:20,116 Speaker 2: the things I wanted to do simply because they nourished me, 251 00:18:20,196 --> 00:18:22,916 Speaker 2: because they felt life giving, and not because they were 252 00:18:22,916 --> 00:18:26,396 Speaker 2: the things I thought I should be doing. And so, 253 00:18:26,556 --> 00:18:30,356 Speaker 2: for the first time in my life, I began creating 254 00:18:30,636 --> 00:18:34,876 Speaker 2: entirely for myself. I began keeping a journal that I 255 00:18:34,956 --> 00:18:38,636 Speaker 2: used as a sort of reporter's notebook, where I would 256 00:18:38,956 --> 00:18:44,236 Speaker 2: you write about the different patients I was befriending, you know, 257 00:18:44,356 --> 00:18:47,556 Speaker 2: the guy down the hall who was trying to encourage 258 00:18:47,596 --> 00:18:51,756 Speaker 2: everyone to mount a hunger strike because our meal trace 259 00:18:51,876 --> 00:18:55,676 Speaker 2: kept arriving with the food still frozen. I wrote about 260 00:18:56,236 --> 00:19:01,996 Speaker 2: the nurses and the gossip that i'd overhear by their station. 261 00:19:02,556 --> 00:19:06,476 Speaker 1: The real life Anatomy flat life, exactly exactly. 262 00:19:06,676 --> 00:19:09,956 Speaker 2: I once asked a young resident if her life resembled 263 00:19:10,036 --> 00:19:12,076 Speaker 2: the cast of Grace Anatomy in any way, and she 264 00:19:12,156 --> 00:19:16,196 Speaker 2: told me that everyone slept around just as much, but 265 00:19:16,396 --> 00:19:20,396 Speaker 2: that everyone was also far less attractive, which was fun 266 00:19:20,396 --> 00:19:22,356 Speaker 2: for me because I got to sort of project all 267 00:19:22,396 --> 00:19:26,636 Speaker 2: sorts of steamy plot twists to everyone coming into my room. 268 00:19:28,356 --> 00:19:30,876 Speaker 2: But I was doing things for the first time in 269 00:19:30,916 --> 00:19:38,396 Speaker 2: my life without any sense of it leading to something, 270 00:19:38,796 --> 00:19:42,596 Speaker 2: without worrying about productivity or output. 271 00:19:44,076 --> 00:19:44,436 Speaker 3: Wow. 272 00:19:44,556 --> 00:19:49,396 Speaker 1: That is so powerful, and it just strikes me as 273 00:19:50,156 --> 00:19:52,316 Speaker 1: I look at my own life. I don't think I've 274 00:19:52,316 --> 00:19:54,476 Speaker 1: ever experienced a period of my life in which I 275 00:19:54,516 --> 00:19:59,116 Speaker 1: did not feel almost an obsessive need to be productive 276 00:19:59,396 --> 00:20:00,796 Speaker 1: and meet expectations. 277 00:20:01,196 --> 00:20:03,556 Speaker 2: I think most of us feel that way. That was 278 00:20:03,556 --> 00:20:07,036 Speaker 2: something I also hadn't experienced, probably from the time that 279 00:20:07,116 --> 00:20:10,196 Speaker 2: I was like four or five years old, when I 280 00:20:10,236 --> 00:20:14,596 Speaker 2: can make a big, glorious mess with finger paints and 281 00:20:14,956 --> 00:20:17,916 Speaker 2: revel in the mass and not worry about if it 282 00:20:17,996 --> 00:20:22,396 Speaker 2: was any good. And I think, you know, shedding that 283 00:20:22,596 --> 00:20:27,036 Speaker 2: pressure to do something well allowed me to play and 284 00:20:27,076 --> 00:20:31,156 Speaker 2: to experiment with different forms in a way that I 285 00:20:31,196 --> 00:20:34,276 Speaker 2: wouldn't have allowed myself. I wouldn't have allowed myself the 286 00:20:34,396 --> 00:20:38,116 Speaker 2: time to just try things for the health trying them. Yeah, 287 00:20:38,156 --> 00:20:41,436 Speaker 2: to read things because they piqued my interests and I 288 00:20:41,476 --> 00:20:46,356 Speaker 2: didn't know why. And I had never had that luxury 289 00:20:46,396 --> 00:20:50,076 Speaker 2: of time, which is an irony, because of course, you know, 290 00:20:50,276 --> 00:20:56,396 Speaker 2: time felt more precious and fleeting than ever before. And 291 00:20:56,436 --> 00:21:01,516 Speaker 2: in writing in that way, I wasn't concerned with writing 292 00:21:02,236 --> 00:21:08,196 Speaker 2: well or beautifully or even gramatically. I was really interested 293 00:21:08,516 --> 00:21:14,636 Speaker 2: in pushing myself to dig for the truth beneath the truth, 294 00:21:14,756 --> 00:21:18,156 Speaker 2: beneath the truth. I wasn't trying to impress anyone. I 295 00:21:18,236 --> 00:21:23,996 Speaker 2: wasn't trying to sound smarter than I was to imitate anyone. 296 00:21:24,316 --> 00:21:28,636 Speaker 2: I was just following the threat of curiosity wherever it 297 00:21:28,716 --> 00:21:32,756 Speaker 2: led me. And so because I was so mired an uncertainty. 298 00:21:32,916 --> 00:21:35,996 Speaker 2: I had no idea what the next couple of hours 299 00:21:35,996 --> 00:21:38,476 Speaker 2: were going to bring, let alone the next day or 300 00:21:38,556 --> 00:21:43,916 Speaker 2: the next week. And because initially that writing was just 301 00:21:43,996 --> 00:21:47,876 Speaker 2: for myself, for the first time in my life, I 302 00:21:47,956 --> 00:21:53,636 Speaker 2: felt like I had finally found my voice. 303 00:21:53,996 --> 00:21:56,236 Speaker 1: We'll be back in a moment. With a slight change 304 00:21:56,236 --> 00:22:12,316 Speaker 1: of plans against the odds, and after months of grueling 305 00:22:12,356 --> 00:22:17,836 Speaker 1: chemotherapy and extreme isolation, Suleka's clinical trial was deemed a success. 306 00:22:18,916 --> 00:22:20,996 Speaker 1: The next step in her treatment would be a bone 307 00:22:21,036 --> 00:22:25,236 Speaker 1: marrow transplant, a high risk, complex procedure and her only 308 00:22:25,356 --> 00:22:30,516 Speaker 1: chance at survival. As her transplant approached, she began reflecting 309 00:22:30,636 --> 00:22:33,516 Speaker 1: on what exactly she wanted to say about her experience 310 00:22:33,556 --> 00:22:34,156 Speaker 1: with cancer. 311 00:22:35,196 --> 00:22:38,796 Speaker 2: I began to read every illness narrative that I could 312 00:22:38,796 --> 00:22:42,516 Speaker 2: get my hands on, but so many of them, the 313 00:22:42,636 --> 00:22:48,996 Speaker 2: beautifully written and wrenching and profound, didn't speak to me, 314 00:22:49,116 --> 00:22:52,116 Speaker 2: because more often than not, they were written from the 315 00:22:52,196 --> 00:22:55,756 Speaker 2: perspective of someone who had survived. And I started to 316 00:22:55,796 --> 00:22:59,036 Speaker 2: notice that there was this kind of hero's journey arc 317 00:22:59,436 --> 00:23:03,116 Speaker 2: to illness narratives, where you return from the thing that 318 00:23:03,196 --> 00:23:08,276 Speaker 2: nearly killed you better and braver and stronger for what 319 00:23:08,316 --> 00:23:13,076 Speaker 2: you've been through, and that couldn't have applied less to me. 320 00:23:13,476 --> 00:23:17,716 Speaker 2: I was terrified, I was struggling, I was isolated, and 321 00:23:17,756 --> 00:23:20,436 Speaker 2: I wanted to put all of that into ink. And 322 00:23:20,516 --> 00:23:23,196 Speaker 2: so what I began to do was to write about 323 00:23:23,196 --> 00:23:27,316 Speaker 2: the very things that felt impossible to talk about. I 324 00:23:27,356 --> 00:23:33,196 Speaker 2: wrote about the infertility caused by my cancer treatments. I 325 00:23:33,236 --> 00:23:39,036 Speaker 2: wrote about the experience of falling in love while falling sick. 326 00:23:39,156 --> 00:23:42,956 Speaker 2: I wrote about the in betweenness of young adulthood. I 327 00:23:42,996 --> 00:23:47,996 Speaker 2: wrote about navigating our healthcare system and all of its complexities. 328 00:23:48,036 --> 00:23:51,516 Speaker 2: I wrote about the sense of guilt and the feeling 329 00:23:51,756 --> 00:23:56,156 Speaker 2: of being a burden that so often comes when you're 330 00:23:56,636 --> 00:24:01,676 Speaker 2: acutely sick. I wrote about all of it. Tony Morrison said, 331 00:24:02,116 --> 00:24:05,476 Speaker 2: if you want to read a book and it doesn't exist, 332 00:24:05,756 --> 00:24:08,676 Speaker 2: then you must write it. And so I think, in 333 00:24:08,716 --> 00:24:11,796 Speaker 2: my own small way, that was my version of doing that. 334 00:24:12,556 --> 00:24:18,356 Speaker 2: And so I decided, because I was pretty limited within 335 00:24:18,436 --> 00:24:22,436 Speaker 2: my options, to start a blog, a really simple blog, 336 00:24:22,756 --> 00:24:26,676 Speaker 2: and it felt so good to have a job that 337 00:24:26,796 --> 00:24:32,036 Speaker 2: I could do other than merely being a patient. And 338 00:24:32,236 --> 00:24:36,956 Speaker 2: to my great surprise, the blog was passed around and 339 00:24:36,996 --> 00:24:40,636 Speaker 2: the journalism professor of mine sent it along to an 340 00:24:40,716 --> 00:24:42,636 Speaker 2: editor at the New York Times, and she called me 341 00:24:42,756 --> 00:24:46,116 Speaker 2: up and asked if I might want to publish an essay. 342 00:24:46,916 --> 00:24:51,996 Speaker 2: And because I was facing the possibility of imminent death, 343 00:24:52,436 --> 00:24:55,756 Speaker 2: I shot my shot and I said, I don't want 344 00:24:55,756 --> 00:24:58,716 Speaker 2: to write an essay. What I'd like to write is 345 00:24:58,756 --> 00:25:03,356 Speaker 2: a weekly column written from the trenches of that uncertainty 346 00:25:03,476 --> 00:25:06,236 Speaker 2: where you don't know how the story is going to end. 347 00:25:06,996 --> 00:25:10,876 Speaker 2: And I went on and on and on, and at 348 00:25:10,876 --> 00:25:14,716 Speaker 2: the end of it, to my great surprise and then 349 00:25:14,876 --> 00:25:19,316 Speaker 2: terror her, she said, okay, we will try it for 350 00:25:19,356 --> 00:25:21,996 Speaker 2: a couple of installments and see how it goes. And 351 00:25:22,156 --> 00:25:25,156 Speaker 2: I had never been published before, I never had a byline, 352 00:25:25,196 --> 00:25:28,636 Speaker 2: and certainly not in a place like the New York Times. 353 00:25:28,876 --> 00:25:34,836 Speaker 2: And what began as elation immediately turned to a sense of, 354 00:25:35,196 --> 00:25:36,516 Speaker 2: Oh shit, how am I. 355 00:25:36,556 --> 00:25:37,596 Speaker 3: Going to pull this off? 356 00:25:39,436 --> 00:25:42,836 Speaker 1: What did it feel like to put these essays this 357 00:25:42,916 --> 00:25:45,276 Speaker 1: call them out into the world while you were so 358 00:25:45,596 --> 00:25:49,316 Speaker 1: unbelievably sick and going through the bone marrow transplant. 359 00:25:50,316 --> 00:25:54,756 Speaker 2: It was extraordinarily challenging, in large part because I had 360 00:25:54,836 --> 00:26:00,556 Speaker 2: new limitations. I was exhausted, I was physically ill in 361 00:26:00,636 --> 00:26:04,916 Speaker 2: ways that were unpredictable, and so I would work in 362 00:26:04,956 --> 00:26:09,756 Speaker 2: these short ten minute installments throughout the day and take 363 00:26:09,836 --> 00:26:15,476 Speaker 2: naps in between. And it was slow and plotting and frustrating, 364 00:26:15,476 --> 00:26:20,276 Speaker 2: and of course through many moments where I felt, you know, 365 00:26:20,996 --> 00:26:26,396 Speaker 2: this deep sense of anger at how different my body was, 366 00:26:26,756 --> 00:26:30,476 Speaker 2: and I felt the sense of my ambition, you know, 367 00:26:30,716 --> 00:26:34,996 Speaker 2: bumping up against my limitations. But it was also an 368 00:26:35,116 --> 00:26:40,836 Speaker 2: exercise for me, a first lesson really in not only 369 00:26:40,876 --> 00:26:46,076 Speaker 2: accepting those limitations, but trying to find creative workarounds. And 370 00:26:46,356 --> 00:26:49,516 Speaker 2: it occurred to me as I started to look to 371 00:26:49,916 --> 00:26:54,476 Speaker 2: examples throughout history of artists and writers who found themselves 372 00:26:54,476 --> 00:27:02,356 Speaker 2: in similar situations, that the limitations could actually be creatively 373 00:27:02,436 --> 00:27:07,276 Speaker 2: generative themselves. So I was obsessed with Free to Callo, 374 00:27:07,596 --> 00:27:11,156 Speaker 2: who had a similar age, had, of course, found herself 375 00:27:11,356 --> 00:27:17,476 Speaker 2: in bed and began making these beautiful, heartbreaking self portraits 376 00:27:18,236 --> 00:27:20,316 Speaker 2: that led to her becoming one of the most well 377 00:27:20,356 --> 00:27:24,996 Speaker 2: known artists throughout time. I read Sarah Manguso, I read 378 00:27:25,076 --> 00:27:30,716 Speaker 2: Lucy Grayley, and I began to get curious about how 379 00:27:31,596 --> 00:27:36,636 Speaker 2: my limitations will challenging were actually twisting my mind out 380 00:27:36,636 --> 00:27:40,076 Speaker 2: of its usual rut. And I began to realize that, really, 381 00:27:40,516 --> 00:27:43,876 Speaker 2: you know, survival is its own kind of creative act. 382 00:27:44,436 --> 00:27:48,356 Speaker 2: When you have chemo sores in your mouth and throat 383 00:27:48,396 --> 00:27:50,676 Speaker 2: that make it impossible to speak, you have to find 384 00:27:50,756 --> 00:27:54,836 Speaker 2: new ways to communicate. When you're confined to a bed, 385 00:27:55,436 --> 00:28:01,436 Speaker 2: you have to use your imagination to travel when you 386 00:28:01,516 --> 00:28:07,596 Speaker 2: can't move, you have to find new ways of entertaining yourself. 387 00:28:07,916 --> 00:28:11,476 Speaker 2: And so I began to get curious about that and 388 00:28:12,316 --> 00:28:14,596 Speaker 2: open to whatever it was that emerged. 389 00:28:16,076 --> 00:28:18,676 Speaker 1: And what was the response like to the column. 390 00:28:18,876 --> 00:28:22,476 Speaker 2: The column, which was called Life Interrupted, launched during that 391 00:28:22,516 --> 00:28:25,956 Speaker 2: first week in the Bone Mirror transplant unit, and it 392 00:28:26,076 --> 00:28:29,476 Speaker 2: was such a bizarre moment of contrast because I was 393 00:28:30,076 --> 00:28:36,396 Speaker 2: sicker than I'd ever been. And the morning after the 394 00:28:36,436 --> 00:28:41,956 Speaker 2: column went live, I opened my inbox and found hundreds 395 00:28:42,036 --> 00:28:47,236 Speaker 2: and hundreds of letters and notes from people all across 396 00:28:47,276 --> 00:28:52,636 Speaker 2: the world. And after being so profoundly isolated for a year, 397 00:28:52,716 --> 00:28:56,876 Speaker 2: it was like this portal had opened onto the rest 398 00:28:56,876 --> 00:28:59,156 Speaker 2: of the world, and I felt a sense of connection 399 00:28:59,996 --> 00:29:04,036 Speaker 2: that I hadn't felt before. I heard from a young 400 00:29:04,116 --> 00:29:07,716 Speaker 2: man down the hallway from me in the transplant unit 401 00:29:07,756 --> 00:29:09,956 Speaker 2: who was going through the same thing I was going through, 402 00:29:09,996 --> 00:29:13,716 Speaker 2: And I never met anybody my age with my same illness. 403 00:29:13,956 --> 00:29:16,956 Speaker 2: And I'll never forget one day when I was being 404 00:29:17,236 --> 00:29:20,916 Speaker 2: wheeled down the hall to get a CT scan, I 405 00:29:21,076 --> 00:29:23,956 Speaker 2: paused at this door and we couldn't meet because the 406 00:29:24,036 --> 00:29:26,556 Speaker 2: germ risk was too high. But I knocked on the 407 00:29:26,596 --> 00:29:30,676 Speaker 2: window and he waved and I waved, and just that 408 00:29:31,156 --> 00:29:38,916 Speaker 2: tiny little moment, that sense of being seen and known 409 00:29:39,276 --> 00:29:42,836 Speaker 2: and that you're not alone, and that particular kind of suffering, 410 00:29:42,996 --> 00:29:48,876 Speaker 2: gave me a sense of hope that fueled me in 411 00:29:48,956 --> 00:29:53,436 Speaker 2: those coming weeks. What surprised me most though, was I 412 00:29:53,556 --> 00:29:56,796 Speaker 2: wasn't just hearing from young people with cancer. I was 413 00:29:56,836 --> 00:30:00,836 Speaker 2: hearing from all kinds of people dealing with all kinds 414 00:30:00,996 --> 00:30:06,156 Speaker 2: of life interruptions. And one of the very first letters 415 00:30:06,236 --> 00:30:08,796 Speaker 2: I received was from a man by the name of 416 00:30:08,876 --> 00:30:12,796 Speaker 2: Quinn Jones who was on death row in Texas, and 417 00:30:12,836 --> 00:30:15,556 Speaker 2: he had read a column where I'd written about that 418 00:30:15,676 --> 00:30:19,356 Speaker 2: sense of being in solitary confinement as I was, that 419 00:30:19,516 --> 00:30:24,356 Speaker 2: sense of waiting for a verdict that is going to 420 00:30:24,476 --> 00:30:27,716 Speaker 2: determine your future. For me, of course, you know that 421 00:30:27,836 --> 00:30:32,596 Speaker 2: verdict meant biopsy results and all kinds of other tests. 422 00:30:32,676 --> 00:30:37,436 Speaker 2: And he wrote me this beautiful letter in long hand cursive, 423 00:30:38,116 --> 00:30:40,956 Speaker 2: and he explained that he had been on death row 424 00:30:41,156 --> 00:30:43,596 Speaker 2: for more than half his life, from the age of eighteen, 425 00:30:44,436 --> 00:30:48,236 Speaker 2: and that even though, of course our circumstances were different, 426 00:30:48,916 --> 00:30:56,316 Speaker 2: he understood how it felt to be confronting your mortality 427 00:30:56,796 --> 00:31:03,636 Speaker 2: and waiting to find out where the gavel landed. And 428 00:31:03,676 --> 00:31:08,796 Speaker 2: it was just one of the most humbling, dizzying experiences 429 00:31:08,796 --> 00:31:11,956 Speaker 2: I've got had. But more than that, you know, I 430 00:31:11,996 --> 00:31:14,836 Speaker 2: think there's a way in which, when you're in pain, 431 00:31:16,036 --> 00:31:19,756 Speaker 2: that pain can turn you selfish, and in a way 432 00:31:20,116 --> 00:31:23,556 Speaker 2: it's necessary. You have to be preoccupied with what's happening 433 00:31:23,556 --> 00:31:27,716 Speaker 2: with your body and accounting how you're feeling, and you know, 434 00:31:28,116 --> 00:31:31,876 Speaker 2: making sure that you're keeping yourself alive. But in the 435 00:31:32,076 --> 00:31:37,836 Speaker 2: act of writing, in the act of daring to be vulnerable, 436 00:31:37,916 --> 00:31:43,356 Speaker 2: which had felt frightening and uncomfortable, I realized that deep, 437 00:31:43,516 --> 00:31:51,076 Speaker 2: unvarnished vulnerability creates a reverberation where vulnerability begets vulnerability begets vulnerability. 438 00:31:51,636 --> 00:31:56,316 Speaker 2: And so in writing my story, I was getting the 439 00:31:56,396 --> 00:32:01,396 Speaker 2: privilege of hearing so many stories from so many different people, 440 00:32:01,476 --> 00:32:05,756 Speaker 2: from so many different walks of life, and it was 441 00:32:06,556 --> 00:32:10,156 Speaker 2: I think a much needed reminder for me that we 442 00:32:10,276 --> 00:32:16,156 Speaker 2: all have these life interrupted moments, these things that happen 443 00:32:17,276 --> 00:32:21,716 Speaker 2: that bring you to the floor. And there was a 444 00:32:21,836 --> 00:32:26,916 Speaker 2: kind of equalizing sense to that, a sense that I 445 00:32:26,996 --> 00:32:31,316 Speaker 2: wasn't alone, and that I wasn't special, and that I 446 00:32:31,436 --> 00:32:35,476 Speaker 2: was part of, you know, the human experience. 447 00:32:37,036 --> 00:32:40,556 Speaker 1: Yeah, I'm getting emotional in this moment because one of 448 00:32:40,556 --> 00:32:41,796 Speaker 1: those messages was for me. 449 00:32:42,996 --> 00:32:43,716 Speaker 2: I remember I. 450 00:32:45,276 --> 00:32:47,396 Speaker 1: Read I think I reached out to you on Facebook, 451 00:32:47,396 --> 00:32:49,556 Speaker 1: but I was I think we're around the same age 452 00:32:49,556 --> 00:32:51,316 Speaker 1: I was in my early twenties. I remember when your 453 00:32:51,356 --> 00:32:56,436 Speaker 1: first column came out. I remember experiencing I mean again nothing, Well, 454 00:32:56,516 --> 00:32:58,316 Speaker 1: we're not supposed to compare suffering, so I'm not going 455 00:32:58,356 --> 00:33:00,676 Speaker 1: to do that for your sake, for your Olympics. I know, 456 00:33:00,756 --> 00:33:03,836 Speaker 1: no suffering lipings, but I had been experiencing just one 457 00:33:03,836 --> 00:33:07,716 Speaker 1: of the most acute, crippling bouts of anxiety that I 458 00:33:07,716 --> 00:33:13,876 Speaker 1: had ever experienced, and You're your column was so transformative 459 00:33:13,876 --> 00:33:16,796 Speaker 1: for me. So like, thank you, I guess in hindsight 460 00:33:18,276 --> 00:33:19,956 Speaker 1: for the way that you made me feel in that 461 00:33:20,036 --> 00:33:23,476 Speaker 1: moment and for what you did for young like twenty 462 00:33:23,556 --> 00:33:26,236 Speaker 1: something my I mean, I can't imagine the number of 463 00:33:26,276 --> 00:33:30,676 Speaker 1: lives that you be touched through the column, but just 464 00:33:30,716 --> 00:33:32,996 Speaker 1: a personal thank you from me for that. 465 00:33:34,156 --> 00:33:41,956 Speaker 2: Now I'm crying. Luckily this is a podcast on the 466 00:33:42,036 --> 00:33:42,956 Speaker 2: Drippy Masskcara. 467 00:33:43,316 --> 00:33:47,236 Speaker 1: Yeah. But I think what's interesting looking back is when 468 00:33:47,236 --> 00:33:49,716 Speaker 1: I sent you that note, like, I wasn't ready to 469 00:33:49,756 --> 00:33:52,156 Speaker 1: be vulnerable about the anxiety that I was facing, but 470 00:33:52,196 --> 00:33:54,116 Speaker 1: it was enough for me as a reader to see 471 00:33:54,116 --> 00:33:57,916 Speaker 1: that you were like, that's part of the equation for 472 00:33:58,076 --> 00:34:00,676 Speaker 1: progress is you just see it reflected in someone else, 473 00:34:00,756 --> 00:34:03,476 Speaker 1: and you'll take your own time with whatever your own 474 00:34:03,636 --> 00:34:07,516 Speaker 1: things are, but eventually you'll feel comfortable talking about them. 475 00:34:08,076 --> 00:34:09,956 Speaker 2: I feel the same way, and I think you know 476 00:34:10,476 --> 00:34:14,556 Speaker 2: more than a writer. I'm a reader first, and part 477 00:34:14,596 --> 00:34:19,876 Speaker 2: of why I've always been a wrath and this reader, 478 00:34:20,156 --> 00:34:22,676 Speaker 2: you know, from the time I was very little, was 479 00:34:23,356 --> 00:34:28,716 Speaker 2: that moment that I'm sure you've had that maybe someone 480 00:34:28,796 --> 00:34:31,916 Speaker 2: listening has had, where you're reading a novel or a 481 00:34:31,956 --> 00:34:39,356 Speaker 2: memoir or a poem and you glimpse a sense of recognition, 482 00:34:40,396 --> 00:34:44,356 Speaker 2: a sense of being known, or of thinking, oh, I 483 00:34:44,356 --> 00:34:47,356 Speaker 2: didn't know. I was allowed to admit that I didn't know. 484 00:34:47,476 --> 00:34:49,916 Speaker 2: I was allowed to feel that or to say that. 485 00:34:50,516 --> 00:34:56,436 Speaker 2: And that is the moment that I'm always looking for 486 00:34:56,716 --> 00:34:59,716 Speaker 2: when I'm reading, and it's the moment I'm always striving 487 00:34:59,836 --> 00:35:01,876 Speaker 2: for when I'm creating and writing. 488 00:35:03,196 --> 00:35:16,756 Speaker 1: Well, mission accomplished. So just to bring listeners up to 489 00:35:16,796 --> 00:35:20,716 Speaker 1: speed on your situation. So, the bone marrow transplant ended 490 00:35:20,756 --> 00:35:23,756 Speaker 1: up being a success, but even though you were now 491 00:35:23,796 --> 00:35:27,596 Speaker 1: in remission, your treatment did not end there right. You 492 00:35:27,636 --> 00:35:30,756 Speaker 1: would need to take maintenance chemotherapy for several years to 493 00:35:30,796 --> 00:35:34,756 Speaker 1: help prevent the leukemia from coming back. I'm so curious 494 00:35:34,836 --> 00:35:37,556 Speaker 1: to know what was that period of time like for you. 495 00:35:38,596 --> 00:35:42,436 Speaker 2: It was a strange time in my life because you know, 496 00:35:42,516 --> 00:35:46,436 Speaker 2: I felt this pressure to get back to it, to 497 00:35:46,836 --> 00:35:50,196 Speaker 2: get back to the land of the living. But the 498 00:35:50,196 --> 00:35:54,996 Speaker 2: reality was that my transplant and the treatment I had 499 00:35:55,036 --> 00:36:01,396 Speaker 2: done had left these permanent imprints on my life, everything 500 00:36:01,476 --> 00:36:07,476 Speaker 2: from really reckoning, say with the loss of my fertility 501 00:36:07,516 --> 00:36:10,956 Speaker 2: and the idea of motherhood as I'd known it, to 502 00:36:11,596 --> 00:36:16,116 Speaker 2: a deep sense of anxiety. I think that comes when 503 00:36:16,156 --> 00:36:18,676 Speaker 2: the ceiling has caved in on you and you no 504 00:36:18,756 --> 00:36:22,596 Speaker 2: longer assume structural stability. I didn't feel safe in my body. 505 00:36:23,076 --> 00:36:28,636 Speaker 2: Every cough sparked a fear of relapse. Every voicemail from 506 00:36:28,676 --> 00:36:34,676 Speaker 2: the doctor's office would send my pulse racing, and I think, 507 00:36:35,036 --> 00:36:39,276 Speaker 2: you know, more than anything. When I was finally done, 508 00:36:39,756 --> 00:36:42,436 Speaker 2: what that meaning schemo. When the port in my chest 509 00:36:43,196 --> 00:36:51,636 Speaker 2: was removed, I expected to feel a deep sense of 510 00:36:53,596 --> 00:36:57,956 Speaker 2: gratitude and relief, and more than that, I expected to 511 00:36:58,236 --> 00:37:03,476 Speaker 2: quickly and organically fold back into the world of the living. 512 00:37:04,036 --> 00:37:07,036 Speaker 2: But that didn't happen, at least not in the way 513 00:37:07,356 --> 00:37:12,636 Speaker 2: that I'd hoped. I was really struggling. I had spent 514 00:37:12,916 --> 00:37:15,676 Speaker 2: at that point four years in the kingdom of the 515 00:37:15,796 --> 00:37:18,756 Speaker 2: sick that had been my whole world, and I had 516 00:37:18,796 --> 00:37:20,876 Speaker 2: figured out, you know, how to build a home for 517 00:37:20,996 --> 00:37:25,036 Speaker 2: myself there. I'd even curved out a career within its conscience. 518 00:37:25,716 --> 00:37:30,156 Speaker 2: And to my surprise, it was the outside world that 519 00:37:30,396 --> 00:37:34,716 Speaker 2: suddenly felt scary and overwhelming to me. I was no 520 00:37:34,796 --> 00:37:39,476 Speaker 2: longer a patient and I couldn't go back to twenty 521 00:37:39,516 --> 00:37:42,436 Speaker 2: two year old me. But I had no idea who 522 00:37:42,516 --> 00:37:45,956 Speaker 2: I was and how to find my way forward, and 523 00:37:46,036 --> 00:37:49,356 Speaker 2: I felt a deep sense of shame. Because I was alive. 524 00:37:49,476 --> 00:37:52,436 Speaker 2: I was lucky to be alive. I knew that so well. 525 00:37:52,516 --> 00:37:55,876 Speaker 2: Out of the ten young cancer comrades as we called 526 00:37:55,916 --> 00:37:59,556 Speaker 2: each other that I befriended during my time and treatment, 527 00:38:00,076 --> 00:38:04,836 Speaker 2: only three of us were still there, and I felt 528 00:38:05,916 --> 00:38:09,916 Speaker 2: that I should move on with my life. And as 529 00:38:09,916 --> 00:38:13,956 Speaker 2: it turned out, moving on begin to feel more like 530 00:38:14,076 --> 00:38:17,356 Speaker 2: a mirage or a myth, because we don't get to 531 00:38:18,236 --> 00:38:22,916 Speaker 2: compartmentalize the most painful parts of our past. We can't, 532 00:38:23,516 --> 00:38:27,636 Speaker 2: you know, skip over the hard work of healing and graving, 533 00:38:28,076 --> 00:38:32,316 Speaker 2: and so instead I began the long journey not of 534 00:38:32,436 --> 00:38:36,316 Speaker 2: moving on, but of trying to find my way forward, 535 00:38:36,676 --> 00:38:39,076 Speaker 2: to move forward with all that had happened. 536 00:38:39,556 --> 00:38:42,916 Speaker 1: Yeah, and listening to you, I'm hearing what a unique 537 00:38:43,036 --> 00:38:46,636 Speaker 1: kind of loneliness post remission life presents to a person 538 00:38:46,836 --> 00:38:50,316 Speaker 1: because and it's so rarely spoken about, which is there's 539 00:38:50,356 --> 00:38:53,196 Speaker 1: this idea, you know, you're one of the lucky ones, Uleka, 540 00:38:53,396 --> 00:38:56,956 Speaker 1: just like, go take your success story and move on. 541 00:38:57,876 --> 00:39:04,756 Speaker 1: And it's such a disservice to the transition and how hard. 542 00:39:04,516 --> 00:39:05,796 Speaker 3: That kind of re entry is. 543 00:39:06,516 --> 00:39:07,756 Speaker 2: Yeah, you know. 544 00:39:07,796 --> 00:39:10,716 Speaker 1: It's when you're in the throes of cancer and you 545 00:39:10,796 --> 00:39:14,756 Speaker 1: tell people I have aggressive leukemia. There's an instant kind 546 00:39:14,756 --> 00:39:17,836 Speaker 1: of compassion or simply that they can lend you. When 547 00:39:17,836 --> 00:39:22,996 Speaker 1: you tell people I'm a recent cancer survivor, you don't 548 00:39:23,036 --> 00:39:26,956 Speaker 1: what they say is congratulations, congratulations, right, I mean, that's 549 00:39:27,076 --> 00:39:31,996 Speaker 1: that's the problem, congratulations, whereas the reaction maybe, I mean 550 00:39:32,036 --> 00:39:35,076 Speaker 1: it should be maybe congratulations, but like maybe not and 551 00:39:35,436 --> 00:39:38,676 Speaker 1: if it is congratulations and is congratulations, and let's have 552 00:39:38,716 --> 00:39:39,956 Speaker 1: a discussion, you know. 553 00:39:40,516 --> 00:39:42,196 Speaker 3: Yeah, so just tell me more more about that. 554 00:39:42,956 --> 00:39:46,156 Speaker 2: Yeah. So, you know, while on treatment, I'd had this 555 00:39:46,596 --> 00:39:51,756 Speaker 2: cavalry of doctors and friends and family surrounding me, and 556 00:39:52,156 --> 00:39:57,836 Speaker 2: pretty instantly when I got that all clear done with chemo, 557 00:39:58,996 --> 00:40:02,836 Speaker 2: I had this sense that everyone around me thought it 558 00:40:02,916 --> 00:40:06,116 Speaker 2: was over, maybe because they wanted so badly to think 559 00:40:06,156 --> 00:40:11,156 Speaker 2: it was over, but it wasn't over, you know, really 560 00:40:11,196 --> 00:40:16,876 Speaker 2: grappling with what I later understood to be PTSD post 561 00:40:16,916 --> 00:40:20,636 Speaker 2: traumatic stress disorder. Because I had been so focused on 562 00:40:20,756 --> 00:40:24,636 Speaker 2: surviving for four years, it hadn't even occurred to me 563 00:40:25,556 --> 00:40:29,316 Speaker 2: that there's a wide gap between surviving and living, and 564 00:40:29,516 --> 00:40:32,636 Speaker 2: that while I was an expert at surviving, I didn't 565 00:40:32,676 --> 00:40:36,956 Speaker 2: know how to live. And in a strange sense, it 566 00:40:37,036 --> 00:40:41,756 Speaker 2: was the hardest, most isolating transition because I didn't have 567 00:40:41,836 --> 00:40:47,116 Speaker 2: treatment protocols, I didn't have doctors telling me what to do. 568 00:40:47,436 --> 00:40:51,516 Speaker 2: I was entirely on my own to figure out how 569 00:40:51,796 --> 00:40:57,356 Speaker 2: to make this transition and so at first, I, almost 570 00:40:57,436 --> 00:41:01,356 Speaker 2: like an anthropologist might, was like looking around at my 571 00:41:01,476 --> 00:41:04,716 Speaker 2: friends and thinking to myself, what is a normal, healthy 572 00:41:05,276 --> 00:41:10,636 Speaker 2: twenty six year old women do and trying to emulate that, which, 573 00:41:10,876 --> 00:41:15,316 Speaker 2: of course, you know, wasn't working. I was still healing 574 00:41:15,516 --> 00:41:19,996 Speaker 2: physically from this experience, but more than that, emotionally and spiritually, 575 00:41:20,436 --> 00:41:26,916 Speaker 2: And it took me a while to understand and acknowledge 576 00:41:27,196 --> 00:41:34,956 Speaker 2: to myself that the hardest part of this experience was 577 00:41:34,996 --> 00:41:39,316 Speaker 2: going to be its aftermath, because that's where my own 578 00:41:39,356 --> 00:41:45,636 Speaker 2: work was going to begin. And as much as we 579 00:41:45,756 --> 00:41:51,036 Speaker 2: think of recovery as some sort of gentle self care 580 00:41:51,196 --> 00:41:55,516 Speaker 2: spree involving you know, massage, therapy and you know whatever else, 581 00:41:56,196 --> 00:42:00,396 Speaker 2: for me, at least it was truly this kind of terrifying, 582 00:42:01,796 --> 00:42:04,556 Speaker 2: brute act of discovery. 583 00:42:09,996 --> 00:42:13,116 Speaker 1: Hey, thanks so much for listening. There's so much more 584 00:42:13,196 --> 00:42:15,956 Speaker 1: of Suleka's story I want to share with you, So 585 00:42:15,996 --> 00:42:18,916 Speaker 1: we've released a part two of our conversation that you 586 00:42:18,916 --> 00:42:22,276 Speaker 1: can listen to. Now, we talk about the creative and 587 00:42:22,356 --> 00:42:26,356 Speaker 1: adventurous way Suleka navigated her transition back to the Kingdom 588 00:42:26,356 --> 00:42:30,076 Speaker 1: of the Well. We also talk about her recent experience 589 00:42:30,196 --> 00:42:32,116 Speaker 1: re entering the Kingdom of the sick. 590 00:42:32,476 --> 00:42:37,596 Speaker 2: Relapse was my biggest fear. It was this fear that 591 00:42:37,716 --> 00:42:40,996 Speaker 2: I had nursed in the early years and that had slowly, 592 00:42:41,236 --> 00:42:44,116 Speaker 2: little by little shrunk, but it was always a specter, 593 00:42:44,836 --> 00:42:50,396 Speaker 2: and so to be confronted with that worst sphere for 594 00:42:50,476 --> 00:42:53,676 Speaker 2: it to come to pass was devastating. 595 00:42:54,916 --> 00:42:57,356 Speaker 1: The second part of the story is available now in 596 00:42:57,396 --> 00:43:01,716 Speaker 1: the feed for A Slight Change of Plans. If you 597 00:43:01,836 --> 00:43:04,796 Speaker 1: enjoyed our conversation, we on the Slight Change team would 598 00:43:04,836 --> 00:43:07,516 Speaker 1: really appreciate if you could share this episode with someone 599 00:43:07,556 --> 00:43:10,676 Speaker 1: you know who's going through their own life interrupted moment 600 00:43:11,316 --> 00:43:15,076 Speaker 1: and need some help navigating that uncertainty. We'd also be 601 00:43:15,116 --> 00:43:17,196 Speaker 1: grateful if you took a moment to follow the show 602 00:43:17,236 --> 00:43:20,236 Speaker 1: on your podcast app of choice and to write a review. 603 00:43:20,956 --> 00:43:23,676 Speaker 1: It helps more people discover the show and helps us 604 00:43:23,756 --> 00:43:25,316 Speaker 1: keep making more episodes for you. 605 00:43:25,836 --> 00:43:38,636 Speaker 3: Thanks so much. A Slight Change of Plans. 606 00:43:38,276 --> 00:43:41,596 Speaker 1: Is created, written, and executive produced by me Maya Schunker. 607 00:43:42,276 --> 00:43:46,076 Speaker 1: The Slight Change family includes our showrunner Tyler Green, our 608 00:43:46,116 --> 00:43:50,756 Speaker 1: senior editor Kate Parkinson Morgan, our senior producer Trishia Bobida, 609 00:43:51,116 --> 00:43:54,796 Speaker 1: and our engineer Eric oh Wang. Louis Scara wrote our 610 00:43:54,796 --> 00:43:58,196 Speaker 1: delightful theme song and Ginger Smith helped arrange the vocals. 611 00:43:58,956 --> 00:44:02,036 Speaker 1: A Slight Change of Plans is a production of Pushkin Industries, 612 00:44:02,276 --> 00:44:05,156 Speaker 1: so a big thanks to everyone there, and of course 613 00:44:05,476 --> 00:44:08,796 Speaker 1: a very special thanks to Jimmy Lee. You can follow 614 00:44:08,836 --> 00:44:12,116 Speaker 1: a Slight Change of Plans on Instagram at doctor Maya Schunker. 615 00:44:12,676 --> 00:44:13,516 Speaker 3: See you next week.