1 00:00:14,996 --> 00:00:15,436 Speaker 1: Pushkin. 2 00:00:30,636 --> 00:00:36,356 Speaker 2: It was like a slow nightmare, because every day you think, oh, 3 00:00:36,636 --> 00:00:40,396 Speaker 2: surely tomorrow I'll be better, and I would dream of 4 00:00:40,436 --> 00:00:42,596 Speaker 2: being better at night. I would dream that my face 5 00:00:42,716 --> 00:00:44,956 Speaker 2: was quote unquote normal or back to the way it was, 6 00:00:44,996 --> 00:00:48,036 Speaker 2: and I'd wake up and there'd be no change. 7 00:00:48,636 --> 00:00:52,156 Speaker 1: At age thirty six, writer Sarah Rule developed a severe 8 00:00:52,316 --> 00:00:56,316 Speaker 1: case of facial paralysis. The left side of her face drooped, 9 00:00:56,836 --> 00:00:59,876 Speaker 1: She couldn't blink or raise her eyebrows, and she could 10 00:00:59,956 --> 00:01:00,796 Speaker 1: no longer smile. 11 00:01:01,436 --> 00:01:03,516 Speaker 2: You know, they say, like, oh, the eyes or the 12 00:01:03,556 --> 00:01:06,196 Speaker 2: window of the soul. The face is the window to 13 00:01:06,276 --> 00:01:10,876 Speaker 2: the soul. I mean, you look at what someone's emoting 14 00:01:11,196 --> 00:01:13,716 Speaker 2: and you think you can read it. It's a big deal. 15 00:01:14,396 --> 00:01:18,516 Speaker 2: So to lose a part of that social expression. I 16 00:01:18,836 --> 00:01:21,316 Speaker 2: just felt frozen. 17 00:01:25,916 --> 00:01:29,316 Speaker 1: On today's episode what it's like to lose your smile. 18 00:01:32,036 --> 00:01:34,956 Speaker 1: I'm Maya Shunker and this is a slight change of plans, 19 00:01:35,316 --> 00:01:37,436 Speaker 1: a show about who we are and who we become 20 00:01:37,716 --> 00:01:52,716 Speaker 1: in the face of a big change. Sarah Rule is 21 00:01:52,716 --> 00:01:56,156 Speaker 1: a celebrated writer known for her popular plays, including the 22 00:01:56,196 --> 00:01:59,956 Speaker 1: Pulitzer Prize finalists, The Clean House and In the Next Room. 23 00:02:00,716 --> 00:02:04,716 Speaker 1: She excels at finding Poetry in Everyday Life and Hilarity 24 00:02:04,876 --> 00:02:09,316 Speaker 1: and Tragedy. The facial paralysis Sarah developed is called called 25 00:02:09,316 --> 00:02:12,636 Speaker 1: Bell's palsy. It's caused by damage to a nerve that 26 00:02:12,716 --> 00:02:16,196 Speaker 1: helps control the muscles in the face. It's unclear what 27 00:02:16,316 --> 00:02:19,396 Speaker 1: causes the condition, but for Sarah, it happened right after 28 00:02:19,436 --> 00:02:23,156 Speaker 1: she gave birth to twins. A lactation consultant was visiting 29 00:02:23,196 --> 00:02:26,396 Speaker 1: Sarah at the hospital and noticed there was something unusual 30 00:02:26,436 --> 00:02:27,436 Speaker 1: about Sarah's face. 31 00:02:28,196 --> 00:02:31,356 Speaker 2: She looked at me and she said, your eye looks 32 00:02:31,356 --> 00:02:35,396 Speaker 2: a little droopy. And I thought, what a rude nurse, Like, 33 00:02:35,476 --> 00:02:38,756 Speaker 2: I'm tired. I thought my eye must be droopy from fatigue, 34 00:02:39,236 --> 00:02:41,476 Speaker 2: and she said, no, that's not what I mean. Go 35 00:02:41,476 --> 00:02:43,516 Speaker 2: look in the mirror. So I got up, I put 36 00:02:43,556 --> 00:02:45,356 Speaker 2: the baby down, I looked in the mirror, and indeed, 37 00:02:45,396 --> 00:02:47,636 Speaker 2: my whole left face had fallen down. 38 00:02:48,836 --> 00:02:51,876 Speaker 1: When you first saw yourself in the mirror, what was 39 00:02:51,916 --> 00:02:53,076 Speaker 1: your visceral reaction? 40 00:02:53,436 --> 00:02:53,596 Speaker 2: Right? 41 00:02:53,676 --> 00:02:55,356 Speaker 1: Like? What? How did that strike you? 42 00:02:56,156 --> 00:03:00,156 Speaker 2: It was really traumatic. It was like looking in the 43 00:03:00,196 --> 00:03:08,756 Speaker 2: mirror and seeing another person, another future, not recognizing the self. 44 00:03:09,516 --> 00:03:15,236 Speaker 2: It was very disturbing. And my husband is a doctor, 45 00:03:15,276 --> 00:03:19,116 Speaker 2: he's a psychiatrist, so I called him and I think 46 00:03:19,156 --> 00:03:22,116 Speaker 2: he was immediately worried that I had a stroke. So 47 00:03:22,156 --> 00:03:25,156 Speaker 2: he said, get them to call a neurology consult and 48 00:03:25,196 --> 00:03:25,956 Speaker 2: I'll be right over. 49 00:03:26,956 --> 00:03:29,636 Speaker 1: So when you found out that it wasn't a stroke 50 00:03:29,876 --> 00:03:34,516 Speaker 1: and it was in fact Bell's palsy, I mean, how 51 00:03:34,636 --> 00:03:37,596 Speaker 1: is that explained to you? And how did that make 52 00:03:37,636 --> 00:03:38,716 Speaker 1: you feel? 53 00:03:39,156 --> 00:03:42,716 Speaker 2: So my first noural just didn't have the best bedside manner. 54 00:03:43,436 --> 00:03:45,156 Speaker 2: You know. He did a number of tests on me 55 00:03:45,876 --> 00:03:47,956 Speaker 2: to determine that it was Bell's palsy, and he just 56 00:03:48,076 --> 00:03:50,516 Speaker 2: kind of said, we don't know why it comes, we 57 00:03:50,556 --> 00:03:53,636 Speaker 2: don't know when it goes. We don't know whether you'll 58 00:03:53,676 --> 00:03:56,316 Speaker 2: get better or not. You'll probably be better in three 59 00:03:56,356 --> 00:03:58,756 Speaker 2: months and just go home and rest and take these 60 00:03:58,796 --> 00:04:02,716 Speaker 2: steroids and there's nothing else to do. My husband was 61 00:04:02,756 --> 00:04:05,836 Speaker 2: with me, and the clearest memory I have is lying 62 00:04:05,876 --> 00:04:08,956 Speaker 2: down in that little hospital bed with them, the narrow bed, 63 00:04:09,236 --> 00:04:13,276 Speaker 2: him holding me and me crying and saying, I don't 64 00:04:13,356 --> 00:04:17,396 Speaker 2: want to be ugly for you, and he said that 65 00:04:17,436 --> 00:04:20,516 Speaker 2: could never be and he just kind of held me 66 00:04:20,556 --> 00:04:21,116 Speaker 2: through the night. 67 00:04:22,916 --> 00:04:28,036 Speaker 1: Can you describe how your face changed? So following your diagnosis, 68 00:04:28,116 --> 00:04:29,636 Speaker 1: what happened when you tried to smile. 69 00:04:30,476 --> 00:04:34,836 Speaker 2: So the one of the truly awful ironies of Bell's 70 00:04:34,836 --> 00:04:37,876 Speaker 2: palsy is you start to recruit the wrong muscles. So 71 00:04:37,996 --> 00:04:40,916 Speaker 2: sometimes when you smile, it actually looks like a grimace. 72 00:04:41,556 --> 00:04:44,676 Speaker 2: My left side would go down when my right side 73 00:04:44,676 --> 00:04:47,636 Speaker 2: would go up, and my eye would close. My left 74 00:04:47,676 --> 00:04:50,276 Speaker 2: eye would close also while I was trying to smile, 75 00:04:50,756 --> 00:04:54,356 Speaker 2: so it would look like you were like you were 76 00:04:54,396 --> 00:04:59,276 Speaker 2: winking at someone and grimacing rather than smiling. Yeah, and 77 00:04:59,836 --> 00:05:03,156 Speaker 2: smiling was the thing. I was most obsessed with people 78 00:05:03,196 --> 00:05:06,396 Speaker 2: reading my affect. And I think particularly because I had 79 00:05:06,396 --> 00:05:09,116 Speaker 2: these little babies and I wanted to smile at them. 80 00:05:08,796 --> 00:05:12,556 Speaker 2: And I also knew that their emotional coding was in 81 00:05:12,596 --> 00:05:15,436 Speaker 2: a way getting wired, and that it's very important having 82 00:05:15,476 --> 00:05:17,356 Speaker 2: your mother smile at you and your baby. And I 83 00:05:17,356 --> 00:05:19,836 Speaker 2: felt like I couldn't tell if they could read my 84 00:05:19,916 --> 00:05:23,076 Speaker 2: face as a smile. I mean, I can look at 85 00:05:23,076 --> 00:05:26,236 Speaker 2: pictures of myself now from that time and I do 86 00:05:26,316 --> 00:05:32,316 Speaker 2: look very blank, you know, very affectless. It just my 87 00:05:32,396 --> 00:05:33,556 Speaker 2: face was like a mask. 88 00:05:34,876 --> 00:05:38,676 Speaker 1: Tell me about how your day to day life change. 89 00:05:38,756 --> 00:05:41,196 Speaker 1: In those early weeks. 90 00:05:41,876 --> 00:05:45,316 Speaker 2: I stopped smiling at people because I didn't want them 91 00:05:45,356 --> 00:05:50,476 Speaker 2: to misinterpret it how sad. I mean I stopped making 92 00:05:50,556 --> 00:05:54,596 Speaker 2: an effort in those social interactions with strangers. If I 93 00:05:54,636 --> 00:05:58,756 Speaker 2: had to, I would explain myself. So, for instance, I 94 00:05:58,796 --> 00:06:02,396 Speaker 2: remember Anna, my oldest, being in kindergarten and having to 95 00:06:02,396 --> 00:06:05,996 Speaker 2: meet the new parents and sort of explaining, if I 96 00:06:05,996 --> 00:06:09,516 Speaker 2: don't seem friendly, it's because the left side of my 97 00:06:09,556 --> 00:06:12,276 Speaker 2: face is paralyzed, and they would say, oh, okay, and 98 00:06:12,356 --> 00:06:15,676 Speaker 2: we'd move on. I felt like I tried to compensate 99 00:06:15,756 --> 00:06:20,836 Speaker 2: by vocalizing more or making hand gestures, so if I 100 00:06:20,876 --> 00:06:24,316 Speaker 2: saw a neighbor from far away, I would wave instead 101 00:06:24,316 --> 00:06:26,956 Speaker 2: of smile to kind of mark a hello. And a 102 00:06:26,956 --> 00:06:30,636 Speaker 2: lot of those were unconscious compensations. I didn't mean to 103 00:06:30,676 --> 00:06:32,076 Speaker 2: do them. I just did them. 104 00:06:32,276 --> 00:06:36,236 Speaker 1: Yeah, what was your daughter Anna's reaction like, because she 105 00:06:36,356 --> 00:06:38,956 Speaker 1: knew a version of you that it'd smiled right, or 106 00:06:38,996 --> 00:06:42,556 Speaker 1: that had blinked with ease and moved her eyebrows, I mean, 107 00:06:42,556 --> 00:06:43,476 Speaker 1: what was that interaction? 108 00:06:43,676 --> 00:06:47,076 Speaker 2: Like? It's funny. I was really worried about it. I 109 00:06:47,196 --> 00:06:49,236 Speaker 2: was really worried that I'd come home with these two 110 00:06:49,356 --> 00:06:52,236 Speaker 2: babies and she would have less attention and I would 111 00:06:52,236 --> 00:07:00,716 Speaker 2: look different, And instead she completely accepted me. And would say, Oh, 112 00:07:00,716 --> 00:07:03,876 Speaker 2: it's okay, mama. I see your trying, mama, See your 113 00:07:04,156 --> 00:07:07,276 Speaker 2: mouth's going up a little. You know, she was really 114 00:07:09,516 --> 00:07:13,516 Speaker 2: completely accepting. And it's one thing I've reflected on through 115 00:07:13,516 --> 00:07:17,156 Speaker 2: this whole process is that we think so much about 116 00:07:17,196 --> 00:07:20,396 Speaker 2: the unconditional love parents have for children, but really it's 117 00:07:20,436 --> 00:07:23,676 Speaker 2: extraordinary that it can go in the other direction too. 118 00:07:24,116 --> 00:07:27,916 Speaker 1: Yeah, what did you learn from that period of time 119 00:07:28,116 --> 00:07:34,076 Speaker 1: about how important it is to facially emote? I mean, 120 00:07:34,356 --> 00:07:36,476 Speaker 1: it is something we all take for granted, and in 121 00:07:36,476 --> 00:07:38,836 Speaker 1: this moment, I'm just imagining being denied that. 122 00:07:41,236 --> 00:07:45,996 Speaker 2: In my worst moments, it felt like that's what it 123 00:07:46,076 --> 00:07:51,716 Speaker 2: was to be human, and I was a ghost. In 124 00:07:51,756 --> 00:07:59,156 Speaker 2: my best moments or my more resilient moments, I would think, well, 125 00:07:59,956 --> 00:08:06,396 Speaker 2: I'm compensating. Yeah, wow, it strikes at the level of 126 00:08:06,516 --> 00:08:10,036 Speaker 2: the soul. I think at the part of the soul 127 00:08:10,156 --> 00:08:14,036 Speaker 2: that's relational. You know, they say like, oh, the eyes 128 00:08:14,196 --> 00:08:16,516 Speaker 2: or the window of the soul. The face is the 129 00:08:16,516 --> 00:08:19,356 Speaker 2: window to the soul. I mean, you look at what 130 00:08:19,516 --> 00:08:23,676 Speaker 2: someone's emoting and you think you can read it. It's 131 00:08:23,716 --> 00:08:27,396 Speaker 2: a big deal. So to lose part of that social 132 00:08:27,436 --> 00:08:33,676 Speaker 2: expression can be really nightmarish and Just for an example, 133 00:08:33,956 --> 00:08:36,436 Speaker 2: I had a play opening at a church in Brooklyn, 134 00:08:36,476 --> 00:08:39,876 Speaker 2: and my mom came with me and we were watching, 135 00:08:39,916 --> 00:08:42,156 Speaker 2: and she kept looking over at me worried, and finally 136 00:08:42,196 --> 00:08:45,956 Speaker 2: she whispered, what's wrong? Are you not pleased? And I 137 00:08:45,996 --> 00:08:50,676 Speaker 2: was like, Mom, I can't smile. I'm pleased. And it 138 00:08:50,756 --> 00:08:54,076 Speaker 2: was disturbing to me that even my own mother couldn't 139 00:08:54,156 --> 00:08:55,196 Speaker 2: read my emotions. 140 00:08:58,236 --> 00:08:59,956 Speaker 1: Was what was it like with your husband? I mean, 141 00:08:59,956 --> 00:09:02,396 Speaker 1: you had that vulnerable moment with him in the hospital 142 00:09:02,476 --> 00:09:05,476 Speaker 1: where you were afraid of being unattractive to him, and 143 00:09:05,596 --> 00:09:09,116 Speaker 1: you know he reassured you. But did you find your 144 00:09:09,236 --> 00:09:11,356 Speaker 1: self changing in any way in terms of how you 145 00:09:11,396 --> 00:09:13,836 Speaker 1: interacted with him in those early weeks and months. 146 00:09:15,076 --> 00:09:19,556 Speaker 2: I think I really retreated. In general. I was tired, 147 00:09:19,716 --> 00:09:21,516 Speaker 2: so there was reason for it, but I think I 148 00:09:21,596 --> 00:09:29,676 Speaker 2: retreated from family festivities and got quite depressed, and so 149 00:09:29,836 --> 00:09:33,196 Speaker 2: I felt like the version of a partner he had 150 00:09:34,716 --> 00:09:38,876 Speaker 2: was I felt inadequate in that way too, and like 151 00:09:38,956 --> 00:09:42,076 Speaker 2: I wasn't giving enough. And it took me a couple 152 00:09:42,036 --> 00:09:44,396 Speaker 2: of years to realize, oh, I really had a full blown, 153 00:09:44,516 --> 00:09:45,756 Speaker 2: like postpartum depression. 154 00:09:48,476 --> 00:09:51,796 Speaker 1: Would you look to him for reassurance or did you 155 00:09:51,836 --> 00:09:53,596 Speaker 1: were you just more avoidant. 156 00:09:54,436 --> 00:09:58,676 Speaker 2: I think I was more avoidant in general, and I 157 00:09:58,756 --> 00:10:01,796 Speaker 2: didn't want my bell's palsy to be something that was 158 00:10:01,836 --> 00:10:07,236 Speaker 2: bothering me. It didn't correspond to my ethic of you know, 159 00:10:07,316 --> 00:10:10,996 Speaker 2: human the human good, like it shouldn't matter, like beauty 160 00:10:10,996 --> 00:10:13,956 Speaker 2: shouldn't matter, or symmetry shouldn't matter. So of course it 161 00:10:13,996 --> 00:10:18,116 Speaker 2: didn't bother me. So I just I pretended it was 162 00:10:18,156 --> 00:10:22,316 Speaker 2: not bothering me, and I pushed forward. But I think 163 00:10:22,356 --> 00:10:23,636 Speaker 2: it was clearly bothering me. 164 00:10:24,436 --> 00:10:28,876 Speaker 1: It's such a relatable feeling an irrational or intellectual level. 165 00:10:28,956 --> 00:10:32,916 Speaker 1: If we interrogate that emotional reaction, might think, no, that's 166 00:10:32,956 --> 00:10:35,316 Speaker 1: not how I really feel. That wouldn't be my top concern. 167 00:10:35,516 --> 00:10:40,276 Speaker 1: But it feels irresistible to have those sorts of thoughts. 168 00:10:41,356 --> 00:10:45,836 Speaker 2: I love what you say about it being irresistible. It's visceral, 169 00:10:46,556 --> 00:10:50,156 Speaker 2: and I think, as a writer and a feminist and 170 00:10:50,196 --> 00:10:54,236 Speaker 2: someone who doesn't put a lot of stock and physical 171 00:10:54,276 --> 00:10:59,756 Speaker 2: beauty certainly as a part of character, I think there 172 00:10:59,876 --> 00:11:04,516 Speaker 2: was another part of me that really denied the reality 173 00:11:04,996 --> 00:11:10,316 Speaker 2: of those irresistible thoughts because they weren't rational, because I 174 00:11:10,356 --> 00:11:14,276 Speaker 2: didn't believe them, and because I didn't believe my own thoughts. 175 00:11:14,716 --> 00:11:17,996 Speaker 2: I dismissed them. But the longer and longer the Bell's 176 00:11:18,036 --> 00:11:22,276 Speaker 2: palsy went on, it became harder and harder to discount 177 00:11:22,636 --> 00:11:24,636 Speaker 2: my own experience of it. 178 00:11:25,116 --> 00:11:27,956 Speaker 1: Yeah, yeah, we don't believe them because they don't align 179 00:11:28,076 --> 00:11:31,156 Speaker 1: with how we prefer to see the world, how we 180 00:11:31,196 --> 00:11:34,556 Speaker 1: ought to see the world right, if we design the 181 00:11:34,596 --> 00:11:37,596 Speaker 1: moral code or the values code right for the universe. 182 00:11:37,716 --> 00:11:41,036 Speaker 1: And I mean, it's so interesting you share this, Sarah, 183 00:11:41,116 --> 00:11:45,196 Speaker 1: because one of the things that I've learned from all 184 00:11:45,236 --> 00:11:48,156 Speaker 1: the conversations I've had on this show is how much 185 00:11:48,356 --> 00:11:52,636 Speaker 1: these moments of change can reveal to us about who 186 00:11:52,676 --> 00:11:55,596 Speaker 1: we are and the assumptions we've been laboring under that 187 00:11:55,716 --> 00:12:01,236 Speaker 1: might not have been visible to us prior. Yes, you know, 188 00:12:01,316 --> 00:12:06,116 Speaker 1: the doctor tells you, okay, the majority of people recover 189 00:12:06,676 --> 00:12:09,636 Speaker 1: without any intervention, right without any medical treatment, and so 190 00:12:10,476 --> 00:12:15,076 Speaker 1: the odds were in your favor. And I'm curious to 191 00:12:15,156 --> 00:12:19,796 Speaker 1: know when the weeks and months passed and you weren't 192 00:12:20,036 --> 00:12:24,436 Speaker 1: showing progress what that felt like for you. 193 00:12:26,956 --> 00:12:32,956 Speaker 2: It was kind of like a slow nightmare, you know, 194 00:12:33,076 --> 00:12:37,076 Speaker 2: because every day you think, oh, surely tomorrow I'll be better, 195 00:12:37,796 --> 00:12:39,836 Speaker 2: and I would dream of being better. At night, I 196 00:12:39,836 --> 00:12:42,356 Speaker 2: would dream that my face was quote unquote normal or 197 00:12:42,436 --> 00:12:44,196 Speaker 2: back to the way it was, and I'd wake up 198 00:12:44,636 --> 00:12:47,636 Speaker 2: and there'd be no change. I eventually went back to 199 00:12:47,676 --> 00:12:51,436 Speaker 2: the neurologist, I think when it had been maybe six months, 200 00:12:52,076 --> 00:12:54,636 Speaker 2: and I really should have been better by then, you know, 201 00:12:54,796 --> 00:12:56,956 Speaker 2: if I was to get better, I should have been 202 00:12:56,996 --> 00:13:00,716 Speaker 2: better by then. And he was quite oddly punitive. I 203 00:13:00,756 --> 00:13:03,436 Speaker 2: felt and sort of looked at me and said, God, 204 00:13:03,676 --> 00:13:07,436 Speaker 2: you're not better at all. Oh gosh. And he said, yeah, 205 00:13:07,476 --> 00:13:11,116 Speaker 2: there's nothing you can do except experimental neurosurgery. That's it. 206 00:13:11,916 --> 00:13:15,116 Speaker 2: And he gave me the name of an experimental neurosurgeon 207 00:13:15,156 --> 00:13:19,436 Speaker 2: at NYU. And they do these like grafts, like take 208 00:13:19,516 --> 00:13:21,716 Speaker 2: a little bit of your thigh and stick it in 209 00:13:21,756 --> 00:13:24,876 Speaker 2: your face and try to graph the nerve actora. It's 210 00:13:24,956 --> 00:13:29,196 Speaker 2: really amazing work that they can do. But I felt 211 00:13:29,236 --> 00:13:33,236 Speaker 2: like being a writer and depending so much on my brain. 212 00:13:34,196 --> 00:13:39,476 Speaker 2: The compound noun experimental and neurosurgery, I just didn't want 213 00:13:39,476 --> 00:13:43,756 Speaker 2: anything to do with those two words mixed together. But yeah, 214 00:13:43,796 --> 00:13:46,796 Speaker 2: emotionally the experience of just being in that stasis, I 215 00:13:47,076 --> 00:13:49,116 Speaker 2: just felt frozen. 216 00:13:52,916 --> 00:13:55,196 Speaker 1: We'll be back in a moment with a slight change 217 00:13:55,196 --> 00:14:11,396 Speaker 1: of plans. Sarah Rule was in her mid thirties when 218 00:14:11,396 --> 00:14:13,876 Speaker 1: she developed Bell's palsy and the left side of her 219 00:14:13,916 --> 00:14:17,996 Speaker 1: face became paralyzed. She details her experience with the condition 220 00:14:18,276 --> 00:14:22,556 Speaker 1: in a heartfelt, an often funny memoir called Smile. I 221 00:14:22,636 --> 00:14:25,036 Speaker 1: was curious to know more about how Sarah coped day 222 00:14:25,076 --> 00:14:28,276 Speaker 1: to day, given that she was showing little improvement. I 223 00:14:28,316 --> 00:14:30,996 Speaker 1: also wanted to hear if her relationship with her condition 224 00:14:31,316 --> 00:14:34,996 Speaker 1: changed over the years. There's this moment in your book 225 00:14:35,196 --> 00:14:40,276 Speaker 1: where I found myself laughing. You were trying to find 226 00:14:40,316 --> 00:14:43,316 Speaker 1: a way forward and to keep your spirits and you're 227 00:14:43,356 --> 00:14:47,476 Speaker 1: morale high, and you read this Buddhist book about anger. 228 00:14:47,996 --> 00:14:50,356 Speaker 2: Yeah, I mean I was. You know, I would try 229 00:14:50,396 --> 00:14:52,916 Speaker 2: to meditate, I would try to read inspiring books. So 230 00:14:52,956 --> 00:14:56,436 Speaker 2: this was by Tik Nahan, who I love. And I 231 00:14:56,516 --> 00:15:00,756 Speaker 2: got to a part where it's you know, whatever you're 232 00:15:00,796 --> 00:15:04,236 Speaker 2: going through, you can always smile. So as you meditate, 233 00:15:04,956 --> 00:15:08,196 Speaker 2: sit and smile and think of your smile, and think 234 00:15:08,236 --> 00:15:10,036 Speaker 2: of the beauty of your smile, and how you can 235 00:15:10,156 --> 00:15:12,716 Speaker 2: always give someone else the beauty of your smile. And 236 00:15:12,756 --> 00:15:16,476 Speaker 2: I just thought, oh my god, I can't. I actually 237 00:15:16,516 --> 00:15:19,316 Speaker 2: I can't, and I think I threw the book across 238 00:15:19,316 --> 00:15:19,676 Speaker 2: the room. 239 00:15:21,716 --> 00:15:24,196 Speaker 1: It's like, uh, dude, I also can't do that very 240 00:15:24,196 --> 00:15:26,436 Speaker 1: basic thing you're telling me that I should do. Oh 241 00:15:26,516 --> 00:15:30,356 Speaker 1: my gosh, I love that. Did you find some solace 242 00:15:30,476 --> 00:15:33,356 Speaker 1: anywhere in terms of like you say in your book 243 00:15:33,356 --> 00:15:35,756 Speaker 1: that you tend to solve problems by reading books, right, 244 00:15:35,796 --> 00:15:37,636 Speaker 1: and so I do wonder if there was any wisdom 245 00:15:37,756 --> 00:15:41,156 Speaker 1: that you were accruing along the way that helped you 246 00:15:41,236 --> 00:15:42,996 Speaker 1: keep morel high. 247 00:15:43,236 --> 00:15:49,036 Speaker 2: I was reading tons of books about Tibetan Buddhism and dharma, 248 00:15:49,076 --> 00:15:52,516 Speaker 2: and I do think they helped me. But I think 249 00:15:54,476 --> 00:15:58,756 Speaker 2: I needed people, and I think I didn't understand that. 250 00:15:59,356 --> 00:16:02,916 Speaker 2: It's such a simple thing. Why I didn't understand that 251 00:16:03,116 --> 00:16:07,556 Speaker 2: is puzzling to me now. But writers can be funny creatures. 252 00:16:08,316 --> 00:16:12,316 Speaker 1: I didn't realize that you'd been isolating more generally from 253 00:16:12,356 --> 00:16:14,236 Speaker 1: other people. Tell me more about that. 254 00:16:15,636 --> 00:16:19,636 Speaker 2: I don't think it was terribly conscious. But you know, 255 00:16:19,836 --> 00:16:22,356 Speaker 2: my work is demanding, so I would throw myself into 256 00:16:22,396 --> 00:16:24,516 Speaker 2: my work, and my kids were demanding, so I threw 257 00:16:24,556 --> 00:16:29,036 Speaker 2: myself into that, and I think I didn't I certainly 258 00:16:29,036 --> 00:16:32,596 Speaker 2: didn't want to meet new people very often, but I 259 00:16:32,636 --> 00:16:36,596 Speaker 2: think with old friends, I did see them, but they 260 00:16:36,636 --> 00:16:39,756 Speaker 2: had no idea what my internal state was. And that's 261 00:16:39,796 --> 00:16:44,036 Speaker 2: how I wanted it, because I didn't want them worrying 262 00:16:44,036 --> 00:16:48,836 Speaker 2: about me. I didn't want them to know what I 263 00:16:48,916 --> 00:16:51,196 Speaker 2: was feeling. I was sort of stoic about the whole thing. 264 00:16:52,836 --> 00:16:56,436 Speaker 2: And so when I was writing the book, I finally 265 00:16:56,516 --> 00:16:59,316 Speaker 2: had the courage to reach out to this other writer, 266 00:16:59,516 --> 00:17:02,276 Speaker 2: Jonathan cawb, who'd written a New Yorker piece about having 267 00:17:02,276 --> 00:17:06,236 Speaker 2: Bell's palsy, and under the pretext of doing research, I said, 268 00:17:06,316 --> 00:17:10,036 Speaker 2: let's have lunch. And meeting Jonathan and talking about our 269 00:17:10,036 --> 00:17:13,116 Speaker 2: experience and also just seeing each other's faces while we 270 00:17:13,116 --> 00:17:16,756 Speaker 2: were eating and the challenges we were both navigating was 271 00:17:16,796 --> 00:17:22,276 Speaker 2: more healing to me than reading fifty books. He would laugh, 272 00:17:22,316 --> 00:17:24,436 Speaker 2: but he would turn away from me when he laughed 273 00:17:24,556 --> 00:17:27,596 Speaker 2: because he didn't want to look asymmetrical when he laughed. 274 00:17:27,596 --> 00:17:31,116 Speaker 2: I knew that because I did that. And when a 275 00:17:31,236 --> 00:17:33,396 Speaker 2: dumpling exploded in his mouth because it can be hard 276 00:17:33,396 --> 00:17:36,636 Speaker 2: to eat with Bell's palsy, he excused himself and used 277 00:17:36,676 --> 00:17:39,756 Speaker 2: a napkin, and I knew that because those things had 278 00:17:39,796 --> 00:17:42,636 Speaker 2: happened to me, and it was sort of the fact 279 00:17:42,876 --> 00:17:48,556 Speaker 2: of mirroring each other and knowing what it felt like 280 00:17:49,036 --> 00:17:54,076 Speaker 2: to eat with a stranger under those conditions, and I 281 00:17:54,116 --> 00:18:00,956 Speaker 2: felt such compassion for him, and in feeling compassion for him, 282 00:18:01,316 --> 00:18:03,516 Speaker 2: I allowed some compassion and for myself. 283 00:18:04,356 --> 00:18:11,836 Speaker 1: Yeah, help unpack for me, Sarah, You're relationship with recovery 284 00:18:11,876 --> 00:18:16,516 Speaker 1: in the early years, you were very non interventionist, right, 285 00:18:16,636 --> 00:18:20,356 Speaker 1: so you weren't aggressive about treatment in the way that 286 00:18:20,596 --> 00:18:22,276 Speaker 1: I feel like a lot of people would have been. 287 00:18:22,556 --> 00:18:25,076 Speaker 1: We all have different instincts when it comes to how 288 00:18:25,076 --> 00:18:27,796 Speaker 1: we try and exert control when we don't feel like 289 00:18:27,836 --> 00:18:30,156 Speaker 1: we have a grip of the steering wheel. And what's 290 00:18:30,196 --> 00:18:33,756 Speaker 1: interesting to me about your story is that, despite feeling 291 00:18:34,436 --> 00:18:37,036 Speaker 1: very frustrated with the fact that you weren't seeing progress, 292 00:18:37,716 --> 00:18:40,716 Speaker 1: the manifestation of that was not let me keep googling, 293 00:18:40,796 --> 00:18:43,276 Speaker 1: let me keep seeing doctors. I mean, you didn't even 294 00:18:43,356 --> 00:18:46,476 Speaker 1: google your condition for the first two years, which is 295 00:18:46,716 --> 00:18:50,556 Speaker 1: just wild to me. So help me understand that. 296 00:18:52,156 --> 00:18:54,916 Speaker 2: Well, for one thing, I think I was afraid that 297 00:18:54,956 --> 00:18:57,276 Speaker 2: if I googled it, it would just tell me you're 298 00:18:57,316 --> 00:19:00,316 Speaker 2: never getting better. Like, if you don't see improvement within 299 00:19:00,396 --> 00:19:03,476 Speaker 2: six months, you'll never get better, and I didn't want 300 00:19:03,516 --> 00:19:08,956 Speaker 2: to see that answer. I come from a medical family. 301 00:19:09,436 --> 00:19:13,196 Speaker 2: My grandfather was a doctor, my sister's a doctor, my 302 00:19:13,316 --> 00:19:16,716 Speaker 2: uncle's aor my husband's a doctor. So I think I 303 00:19:16,796 --> 00:19:20,236 Speaker 2: have an implicit trust in doctors. So when the neurologist 304 00:19:20,316 --> 00:19:23,036 Speaker 2: I saw said the one thing I can do is 305 00:19:23,076 --> 00:19:26,116 Speaker 2: experimental neurosurgery, and I don't want to do that, so 306 00:19:26,196 --> 00:19:29,676 Speaker 2: I guess there's nothing else to do. I just accepted it. 307 00:19:30,436 --> 00:19:33,636 Speaker 2: I did go to acupuncture, and that gave me a 308 00:19:33,636 --> 00:19:37,196 Speaker 2: lot of relief. I did get my ability to blink back, 309 00:19:37,836 --> 00:19:41,436 Speaker 2: and I did eventually get second opinions from different neurologists. 310 00:19:42,076 --> 00:19:47,836 Speaker 2: But I think because I'd been told that it was 311 00:19:48,036 --> 00:19:51,436 Speaker 2: mysterious and some people recovered and some didn't in a 312 00:19:52,036 --> 00:19:55,036 Speaker 2: really bizarre, fairy tale way, I thought it was my 313 00:19:55,156 --> 00:19:57,876 Speaker 2: fault that I wasn't getting better. I felt like a 314 00:19:57,956 --> 00:20:01,196 Speaker 2: bad patient. I'd failed to get better. 315 00:20:02,516 --> 00:20:02,876 Speaker 3: Yeah. 316 00:20:02,956 --> 00:20:07,356 Speaker 1: I think that propensity for self blame is so characteristic 317 00:20:07,476 --> 00:20:11,636 Speaker 1: of people who are dealing with chronic conditions, and I 318 00:20:11,676 --> 00:20:16,076 Speaker 1: have to imagine women dealing with chronic conditions. Was there 319 00:20:16,116 --> 00:20:19,996 Speaker 1: anything you found that helped to counteract that self blame? 320 00:20:21,796 --> 00:20:27,356 Speaker 2: I think, in the end, accepting that something hard had 321 00:20:27,396 --> 00:20:33,036 Speaker 2: happened to me was very helpful, as opposed to trivializing it. 322 00:20:33,996 --> 00:20:41,116 Speaker 2: Saying that sucked or that sucks bluntly was very helpful. 323 00:20:41,156 --> 00:20:43,556 Speaker 2: I remember I have an old friend who's a pediatrician 324 00:20:44,316 --> 00:20:50,996 Speaker 2: who said something like, it's disappointing, isn't it what happened 325 00:20:50,996 --> 00:20:53,196 Speaker 2: to you? She said, it's not a tragedy, but it 326 00:20:53,276 --> 00:20:57,676 Speaker 2: must be really disappointing. I said, it is. It's really disappointing, 327 00:20:58,316 --> 00:21:02,396 Speaker 2: and I felt really understood when she said that to me. 328 00:21:03,756 --> 00:21:07,036 Speaker 2: She saw a couple things about me. She saw that 329 00:21:07,116 --> 00:21:11,916 Speaker 2: I was disappointed. She also saw that I know something 330 00:21:11,956 --> 00:21:14,956 Speaker 2: about the scale of tragedy, and she knows that I 331 00:21:14,996 --> 00:21:20,676 Speaker 2: would never want to winge on about something that wasn't 332 00:21:20,836 --> 00:21:24,916 Speaker 2: actually about the loss of life. For example, I mean, 333 00:21:24,916 --> 00:21:27,236 Speaker 2: I lost my dad to cancer when I was twenty, 334 00:21:28,156 --> 00:21:34,556 Speaker 2: and so chronic disease for me, it's like knowing you're 335 00:21:34,556 --> 00:21:36,956 Speaker 2: not going to die from it is some comfort. 336 00:21:37,876 --> 00:21:41,756 Speaker 1: Is there a moment that you remember where you for 337 00:21:41,836 --> 00:21:45,636 Speaker 1: the first time felt comfortable with the acceptance of present 338 00:21:45,716 --> 00:21:49,356 Speaker 1: day self versus trying to get the full function back. 339 00:21:50,636 --> 00:21:54,036 Speaker 2: Well, I got enough of my smile back at a 340 00:21:54,076 --> 00:21:58,156 Speaker 2: point that I felt I could communicate my social self 341 00:21:58,196 --> 00:22:01,516 Speaker 2: to people. I could let people know I was smiling 342 00:22:01,556 --> 00:22:04,356 Speaker 2: at them. That was huge, and in many ways that 343 00:22:04,356 --> 00:22:08,756 Speaker 2: felt like enough. It wasn't a smile with teeth, it 344 00:22:08,796 --> 00:22:11,996 Speaker 2: wasn't a glamorous smile, but it was enough to show 345 00:22:12,036 --> 00:22:16,996 Speaker 2: people that I was communicating happiness. That was such a 346 00:22:17,116 --> 00:22:23,116 Speaker 2: huge accomplishment In a way, I remember smiling at strangers 347 00:22:23,156 --> 00:22:25,196 Speaker 2: for the first time and having them smile back at me, 348 00:22:25,356 --> 00:22:28,476 Speaker 2: and having that call and response in a kind of 349 00:22:28,556 --> 00:22:34,316 Speaker 2: natural way. Naturals may be the wrong word, a spontaneous way, 350 00:22:34,996 --> 00:22:37,196 Speaker 2: you know, because before that I would think about every 351 00:22:37,556 --> 00:22:40,756 Speaker 2: micro interaction where someone tried to smile at me and 352 00:22:40,796 --> 00:22:43,236 Speaker 2: I felt I couldn't smile back. So when I could 353 00:22:43,276 --> 00:22:46,756 Speaker 2: do that, that really did feel like enough to me, 354 00:22:47,076 --> 00:22:50,276 Speaker 2: like enough to proceed, enough to go on. MM. 355 00:22:52,356 --> 00:22:56,676 Speaker 1: In the decade plus that's past since your original diagnosis 356 00:22:56,716 --> 00:22:59,956 Speaker 1: of Bell's palsy, you have less paralysis in the left 357 00:22:59,956 --> 00:23:03,116 Speaker 1: side of your face, but you haven't regained full control right. 358 00:23:03,156 --> 00:23:06,636 Speaker 1: There is some paralysis, and I'm curious if you can 359 00:23:06,716 --> 00:23:10,636 Speaker 1: reflect on what aspect so that you still find difficult, 360 00:23:10,716 --> 00:23:13,236 Speaker 1: if at all. 361 00:23:14,316 --> 00:23:20,196 Speaker 2: I don't love being photographed, but beyond that, I don't 362 00:23:20,196 --> 00:23:23,716 Speaker 2: think about it all that much anymore. There are moments 363 00:23:23,756 --> 00:23:27,396 Speaker 2: where I would love to flash a big toothy smile 364 00:23:27,436 --> 00:23:31,916 Speaker 2: at someone, you know, either to mirror their smile or 365 00:23:32,156 --> 00:23:35,956 Speaker 2: just to express that deep joy. And sometimes I find 366 00:23:35,996 --> 00:23:49,396 Speaker 2: that annoying. But I feel like I'm onto other things, 367 00:23:50,676 --> 00:23:52,356 Speaker 2: you know. And I think there was a long time 368 00:23:52,356 --> 00:23:54,436 Speaker 2: where I was stuck in a cul de sac around this, 369 00:23:54,716 --> 00:23:59,156 Speaker 2: really stuck in a kind of despair shame spiral. And 370 00:23:59,236 --> 00:24:03,356 Speaker 2: I feel like I've shot myself out of that little 371 00:24:03,396 --> 00:24:06,996 Speaker 2: called a sack. I've proceeded onto new terrain. 372 00:24:07,636 --> 00:24:10,596 Speaker 1: Do you think that's just Is it just the passage 373 00:24:10,596 --> 00:24:14,916 Speaker 1: of time that's responsible for ejecting you from the spiral? 374 00:24:16,076 --> 00:24:18,716 Speaker 2: I think it was the writing process that ejected me. 375 00:24:19,116 --> 00:24:21,676 Speaker 2: And it's interesting because there was a point where I 376 00:24:21,676 --> 00:24:24,836 Speaker 2: didn't want to write about it. I thought, oh ugh, yuck, 377 00:24:25,836 --> 00:24:29,036 Speaker 2: I'm a writer. I don't write about my body. Who cares, 378 00:24:29,196 --> 00:24:31,916 Speaker 2: you know? And I, you know, with encouragement and support, 379 00:24:31,996 --> 00:24:34,476 Speaker 2: it turned out I had plenty to say about it, 380 00:24:34,676 --> 00:24:39,516 Speaker 2: and I think making sense of what happened to me 381 00:24:41,516 --> 00:24:46,156 Speaker 2: really helped me let it go. It was also because 382 00:24:46,196 --> 00:24:49,796 Speaker 2: I spoke about my experience. It gave permission for others 383 00:24:49,796 --> 00:24:52,156 Speaker 2: to ask me about it, not only strangers who had 384 00:24:52,156 --> 00:24:55,436 Speaker 2: had Bell's palsy, but family who had said, I didn't 385 00:24:55,476 --> 00:24:59,396 Speaker 2: know you were experiencing that. I'm so sorry, do you 386 00:24:59,476 --> 00:25:01,596 Speaker 2: want to talk about it? It was I think I 387 00:25:01,716 --> 00:25:05,196 Speaker 2: had given off a lack of permission to talk about 388 00:25:05,236 --> 00:25:09,036 Speaker 2: my face, which makes sense because it's impolite to ask people. 389 00:25:10,236 --> 00:25:12,756 Speaker 2: You know, in general, we don't go around saying, oh, 390 00:25:12,796 --> 00:25:14,676 Speaker 2: it looks like you have facial paralysis. Do you want 391 00:25:14,716 --> 00:25:15,916 Speaker 2: to talk about it? In the same way that we 392 00:25:15,916 --> 00:25:17,716 Speaker 2: wouldn't say, like, oh, you have something in your teeth, 393 00:25:17,716 --> 00:25:20,476 Speaker 2: you have something like unless there's a real intimacy, you 394 00:25:20,676 --> 00:25:26,676 Speaker 2: don't mention her. Of course, so it became an invitation 395 00:25:26,876 --> 00:25:30,676 Speaker 2: to dialogue that I think was healing. Even with my kids. 396 00:25:32,076 --> 00:25:35,716 Speaker 2: My daughter had been Anna had been overhearing me talking 397 00:25:35,756 --> 00:25:40,116 Speaker 2: to my editor about the book and a little bit 398 00:25:40,196 --> 00:25:44,436 Speaker 2: she was overhearing about some depression I'd had as a 399 00:25:44,436 --> 00:25:47,196 Speaker 2: result of the Bell's palsy, And afterwards I said, oh, sorry, Anne, 400 00:25:47,196 --> 00:25:49,916 Speaker 2: I I was that okay for you to hear? And 401 00:25:49,956 --> 00:25:53,156 Speaker 2: she said, you know how I've always thought of your face, 402 00:25:53,196 --> 00:25:56,716 Speaker 2: And I said, no, how and she said, I've always 403 00:25:56,756 --> 00:26:01,196 Speaker 2: thought of it kind of like a house. Your face 404 00:26:01,276 --> 00:26:05,036 Speaker 2: was this beautiful house, and the left side fell down 405 00:26:05,116 --> 00:26:07,716 Speaker 2: one day, and you kept trying to build it up, 406 00:26:07,796 --> 00:26:11,556 Speaker 2: brick by brick. You kept try and you couldn't quite. 407 00:26:11,876 --> 00:26:14,276 Speaker 2: But when I look at your face, all I see 408 00:26:14,356 --> 00:26:19,276 Speaker 2: is my home. I don't see a broken house. And 409 00:26:19,916 --> 00:26:22,356 Speaker 2: I just thought, Wow, if it took me writing that 410 00:26:22,396 --> 00:26:25,356 Speaker 2: whole book to hear Anna reflect that back to me, 411 00:26:26,316 --> 00:26:51,436 Speaker 2: you know, it would have been worth it. 412 00:26:51,956 --> 00:26:54,916 Speaker 1: Hey, thanks so much for listening. Join me next week 413 00:26:54,956 --> 00:26:58,556 Speaker 1: when I talk with writer Jennifer Ramalini. For so long, 414 00:26:58,676 --> 00:27:02,036 Speaker 1: Jennifer prided herself on her work ethic, climbing to the 415 00:27:02,076 --> 00:27:05,196 Speaker 1: top of every corporate ladder and working herself to the bone, 416 00:27:06,076 --> 00:27:09,396 Speaker 1: But after years of burning herself out, she realized her 417 00:27:09,396 --> 00:27:11,076 Speaker 1: ambition had turned toxic. 418 00:27:11,636 --> 00:27:14,676 Speaker 3: I've really looked to the outside world like I had everything, 419 00:27:15,236 --> 00:27:19,556 Speaker 3: but I was already at the top of that going wait, 420 00:27:19,636 --> 00:27:23,596 Speaker 3: is this it? Because I had not been building my 421 00:27:24,596 --> 00:27:28,396 Speaker 3: personal and life resume at the same pace that I 422 00:27:28,436 --> 00:27:32,076 Speaker 3: had been building my professional resume, so my life was 423 00:27:32,116 --> 00:27:33,316 Speaker 3: completely unbalanced. 424 00:27:33,996 --> 00:27:46,596 Speaker 1: That's next week on a slight change of plans, A 425 00:27:46,636 --> 00:27:50,156 Speaker 1: slight change of Plans is created, written, and executive produced 426 00:27:50,156 --> 00:27:53,596 Speaker 1: by me Maya Schunker. The Slight Change family includes our 427 00:27:53,636 --> 00:27:58,356 Speaker 1: showrunner Tyler Green, our senior producer Kate Parkinson Morgan, our 428 00:27:58,356 --> 00:28:03,316 Speaker 1: producer Brianna Garrett, and our engineer Eric Iwuang. Louis Gara 429 00:28:03,476 --> 00:28:06,836 Speaker 1: wrote our delightful theme song and Ginger Smith helped arrange 430 00:28:06,836 --> 00:28:09,996 Speaker 1: the vocals. A Slight Change of Plans is a production 431 00:28:10,036 --> 00:28:13,116 Speaker 1: of Pushkin Industries, so a big thanks to everyone there, 432 00:28:13,676 --> 00:28:17,396 Speaker 1: and of course a very special thanks to Jimmy Lee. 433 00:28:17,796 --> 00:28:20,356 Speaker 1: You can follow A Slight Change of Plans on Instagram 434 00:28:20,396 --> 00:28:22,916 Speaker 1: at doctor Maya Schunker. See you next week.