WEBVTT - The Story of a Smile 0:00:14.996 --> 0:00:15.436 Pushkin. 0:00:30.636 --> 0:00:36.356 It was like a slow nightmare, because every day you think, oh, 0:00:36.636 --> 0:00:40.396 surely tomorrow I'll be better, and I would dream of 0:00:40.436 --> 0:00:42.596 being better at night. I would dream that my face 0:00:42.716 --> 0:00:44.956 was quote unquote normal or back to the way it was, 0:00:44.996 --> 0:00:48.036 and I'd wake up and there'd be no change. 0:00:48.636 --> 0:00:52.156 At age thirty six, writer Sarah Rule developed a severe 0:00:52.316 --> 0:00:56.316 case of facial paralysis. The left side of her face drooped, 0:00:56.836 --> 0:00:59.876 She couldn't blink or raise her eyebrows, and she could 0:00:59.956 --> 0:01:00.796 no longer smile. 0:01:01.436 --> 0:01:03.516 You know, they say, like, oh, the eyes or the 0:01:03.556 --> 0:01:06.196 window of the soul. The face is the window to 0:01:06.276 --> 0:01:10.876 the soul. I mean, you look at what someone's emoting 0:01:11.196 --> 0:01:13.716 and you think you can read it. It's a big deal. 0:01:14.396 --> 0:01:18.516 So to lose a part of that social expression. I 0:01:18.836 --> 0:01:21.316 just felt frozen. 0:01:25.916 --> 0:01:29.316 On today's episode what it's like to lose your smile. 0:01:32.036 --> 0:01:34.956 I'm Maya Shunker and this is a slight change of plans, 0:01:35.316 --> 0:01:37.436 a show about who we are and who we become 0:01:37.716 --> 0:01:52.716 in the face of a big change. Sarah Rule is 0:01:52.716 --> 0:01:56.156 a celebrated writer known for her popular plays, including the 0:01:56.196 --> 0:01:59.956 Pulitzer Prize finalists, The Clean House and In the Next Room. 0:02:00.716 --> 0:02:04.716 She excels at finding Poetry in Everyday Life and Hilarity 0:02:04.876 --> 0:02:09.316 and Tragedy. The facial paralysis Sarah developed is called called 0:02:09.316 --> 0:02:12.636 Bell's palsy. It's caused by damage to a nerve that 0:02:12.716 --> 0:02:16.196 helps control the muscles in the face. It's unclear what 0:02:16.316 --> 0:02:19.396 causes the condition, but for Sarah, it happened right after 0:02:19.436 --> 0:02:23.156 she gave birth to twins. A lactation consultant was visiting 0:02:23.196 --> 0:02:26.396 Sarah at the hospital and noticed there was something unusual 0:02:26.436 --> 0:02:27.436 about Sarah's face. 0:02:28.196 --> 0:02:31.356 She looked at me and she said, your eye looks 0:02:31.356 --> 0:02:35.396 a little droopy. And I thought, what a rude nurse, Like, 0:02:35.476 --> 0:02:38.756 I'm tired. I thought my eye must be droopy from fatigue, 0:02:39.236 --> 0:02:41.476 and she said, no, that's not what I mean. Go 0:02:41.476 --> 0:02:43.516 look in the mirror. So I got up, I put 0:02:43.556 --> 0:02:45.356 the baby down, I looked in the mirror, and indeed, 0:02:45.396 --> 0:02:47.636 my whole left face had fallen down. 0:02:48.836 --> 0:02:51.876 When you first saw yourself in the mirror, what was 0:02:51.916 --> 0:02:53.076 your visceral reaction? 0:02:53.436 --> 0:02:53.596 Right? 0:02:53.676 --> 0:02:55.356 Like? What? How did that strike you? 0:02:56.156 --> 0:03:00.156 It was really traumatic. It was like looking in the 0:03:00.196 --> 0:03:08.756 mirror and seeing another person, another future, not recognizing the self. 0:03:09.516 --> 0:03:15.236 It was very disturbing. And my husband is a doctor, 0:03:15.276 --> 0:03:19.116 he's a psychiatrist, so I called him and I think 0:03:19.156 --> 0:03:22.116 he was immediately worried that I had a stroke. So 0:03:22.156 --> 0:03:25.156 he said, get them to call a neurology consult and 0:03:25.196 --> 0:03:25.956 I'll be right over. 0:03:26.956 --> 0:03:29.636 So when you found out that it wasn't a stroke 0:03:29.876 --> 0:03:34.516 and it was in fact Bell's palsy, I mean, how 0:03:34.636 --> 0:03:37.596 is that explained to you? And how did that make 0:03:37.636 --> 0:03:38.716 you feel? 0:03:39.156 --> 0:03:42.716 So my first noural just didn't have the best bedside manner. 0:03:43.436 --> 0:03:45.156 You know. He did a number of tests on me 0:03:45.876 --> 0:03:47.956 to determine that it was Bell's palsy, and he just 0:03:48.076 --> 0:03:50.516 kind of said, we don't know why it comes, we 0:03:50.556 --> 0:03:53.636 don't know when it goes. We don't know whether you'll 0:03:53.676 --> 0:03:56.316 get better or not. You'll probably be better in three 0:03:56.356 --> 0:03:58.756 months and just go home and rest and take these 0:03:58.796 --> 0:04:02.716 steroids and there's nothing else to do. My husband was 0:04:02.756 --> 0:04:05.836 with me, and the clearest memory I have is lying 0:04:05.876 --> 0:04:08.956 down in that little hospital bed with them, the narrow bed, 0:04:09.236 --> 0:04:13.276 him holding me and me crying and saying, I don't 0:04:13.356 --> 0:04:17.396 want to be ugly for you, and he said that 0:04:17.436 --> 0:04:20.516 could never be and he just kind of held me 0:04:20.556 --> 0:04:21.116 through the night. 0:04:22.916 --> 0:04:28.036 Can you describe how your face changed? So following your diagnosis, 0:04:28.116 --> 0:04:29.636 what happened when you tried to smile. 0:04:30.476 --> 0:04:34.836 So the one of the truly awful ironies of Bell's 0:04:34.836 --> 0:04:37.876 palsy is you start to recruit the wrong muscles. So 0:04:37.996 --> 0:04:40.916 sometimes when you smile, it actually looks like a grimace. 0:04:41.556 --> 0:04:44.676 My left side would go down when my right side 0:04:44.676 --> 0:04:47.636 would go up, and my eye would close. My left 0:04:47.676 --> 0:04:50.276 eye would close also while I was trying to smile, 0:04:50.756 --> 0:04:54.356 so it would look like you were like you were 0:04:54.396 --> 0:04:59.276 winking at someone and grimacing rather than smiling. Yeah, and 0:04:59.836 --> 0:05:03.156 smiling was the thing. I was most obsessed with people 0:05:03.196 --> 0:05:06.396 reading my affect. And I think particularly because I had 0:05:06.396 --> 0:05:09.116 these little babies and I wanted to smile at them. 0:05:08.796 --> 0:05:12.556 And I also knew that their emotional coding was in 0:05:12.596 --> 0:05:15.436 a way getting wired, and that it's very important having 0:05:15.476 --> 0:05:17.356 your mother smile at you and your baby. And I 0:05:17.356 --> 0:05:19.836 felt like I couldn't tell if they could read my 0:05:19.916 --> 0:05:23.076 face as a smile. I mean, I can look at 0:05:23.076 --> 0:05:26.236 pictures of myself now from that time and I do 0:05:26.316 --> 0:05:32.316 look very blank, you know, very affectless. It just my 0:05:32.396 --> 0:05:33.556 face was like a mask. 0:05:34.876 --> 0:05:38.676 Tell me about how your day to day life change. 0:05:38.756 --> 0:05:41.196 In those early weeks. 0:05:41.876 --> 0:05:45.316 I stopped smiling at people because I didn't want them 0:05:45.356 --> 0:05:50.476 to misinterpret it how sad. I mean I stopped making 0:05:50.556 --> 0:05:54.596 an effort in those social interactions with strangers. If I 0:05:54.636 --> 0:05:58.756 had to, I would explain myself. So, for instance, I 0:05:58.796 --> 0:06:02.396 remember Anna, my oldest, being in kindergarten and having to 0:06:02.396 --> 0:06:05.996 meet the new parents and sort of explaining, if I 0:06:05.996 --> 0:06:09.516 don't seem friendly, it's because the left side of my 0:06:09.556 --> 0:06:12.276 face is paralyzed, and they would say, oh, okay, and 0:06:12.356 --> 0:06:15.676 we'd move on. I felt like I tried to compensate 0:06:15.756 --> 0:06:20.836 by vocalizing more or making hand gestures, so if I 0:06:20.876 --> 0:06:24.316 saw a neighbor from far away, I would wave instead 0:06:24.316 --> 0:06:26.956 of smile to kind of mark a hello. And a 0:06:26.956 --> 0:06:30.636 lot of those were unconscious compensations. I didn't mean to 0:06:30.676 --> 0:06:32.076 do them. I just did them. 0:06:32.276 --> 0:06:36.236 Yeah, what was your daughter Anna's reaction like, because she 0:06:36.356 --> 0:06:38.956 knew a version of you that it'd smiled right, or 0:06:38.996 --> 0:06:42.556 that had blinked with ease and moved her eyebrows, I mean, 0:06:42.556 --> 0:06:43.476 what was that interaction? 0:06:43.676 --> 0:06:47.076 Like? It's funny. I was really worried about it. I 0:06:47.196 --> 0:06:49.236 was really worried that I'd come home with these two 0:06:49.356 --> 0:06:52.236 babies and she would have less attention and I would 0:06:52.236 --> 0:07:00.716 look different, And instead she completely accepted me. And would say, Oh, 0:07:00.716 --> 0:07:03.876 it's okay, mama. I see your trying, mama, See your 0:07:04.156 --> 0:07:07.276 mouth's going up a little. You know, she was really 0:07:09.516 --> 0:07:13.516 completely accepting. And it's one thing I've reflected on through 0:07:13.516 --> 0:07:17.156 this whole process is that we think so much about 0:07:17.196 --> 0:07:20.396 the unconditional love parents have for children, but really it's 0:07:20.436 --> 0:07:23.676 extraordinary that it can go in the other direction too. 0:07:24.116 --> 0:07:27.916 Yeah, what did you learn from that period of time 0:07:28.116 --> 0:07:34.076 about how important it is to facially emote? I mean, 0:07:34.356 --> 0:07:36.476 it is something we all take for granted, and in 0:07:36.476 --> 0:07:38.836 this moment, I'm just imagining being denied that. 0:07:41.236 --> 0:07:45.996 In my worst moments, it felt like that's what it 0:07:46.076 --> 0:07:51.716 was to be human, and I was a ghost. In 0:07:51.756 --> 0:07:59.156 my best moments or my more resilient moments, I would think, well, 0:07:59.956 --> 0:08:06.396 I'm compensating. Yeah, wow, it strikes at the level of 0:08:06.516 --> 0:08:10.036 the soul. I think at the part of the soul 0:08:10.156 --> 0:08:14.036 that's relational. You know, they say like, oh, the eyes 0:08:14.196 --> 0:08:16.516 or the window of the soul. The face is the 0:08:16.516 --> 0:08:19.356 window to the soul. I mean, you look at what 0:08:19.516 --> 0:08:23.676 someone's emoting and you think you can read it. It's 0:08:23.716 --> 0:08:27.396 a big deal. So to lose part of that social 0:08:27.436 --> 0:08:33.676 expression can be really nightmarish and Just for an example, 0:08:33.956 --> 0:08:36.436 I had a play opening at a church in Brooklyn, 0:08:36.476 --> 0:08:39.876 and my mom came with me and we were watching, 0:08:39.916 --> 0:08:42.156 and she kept looking over at me worried, and finally 0:08:42.196 --> 0:08:45.956 she whispered, what's wrong? Are you not pleased? And I 0:08:45.996 --> 0:08:50.676 was like, Mom, I can't smile. I'm pleased. And it 0:08:50.756 --> 0:08:54.076 was disturbing to me that even my own mother couldn't 0:08:54.156 --> 0:08:55.196 read my emotions. 0:08:58.236 --> 0:08:59.956 Was what was it like with your husband? I mean, 0:08:59.956 --> 0:09:02.396 you had that vulnerable moment with him in the hospital 0:09:02.476 --> 0:09:05.476 where you were afraid of being unattractive to him, and 0:09:05.596 --> 0:09:09.116 you know he reassured you. But did you find your 0:09:09.236 --> 0:09:11.356 self changing in any way in terms of how you 0:09:11.396 --> 0:09:13.836 interacted with him in those early weeks and months. 0:09:15.076 --> 0:09:19.556 I think I really retreated. In general. I was tired, 0:09:19.716 --> 0:09:21.516 so there was reason for it, but I think I 0:09:21.596 --> 0:09:29.676 retreated from family festivities and got quite depressed, and so 0:09:29.836 --> 0:09:33.196 I felt like the version of a partner he had 0:09:34.716 --> 0:09:38.876 was I felt inadequate in that way too, and like 0:09:38.956 --> 0:09:42.076 I wasn't giving enough. And it took me a couple 0:09:42.036 --> 0:09:44.396 of years to realize, oh, I really had a full blown, 0:09:44.516 --> 0:09:45.756 like postpartum depression. 0:09:48.476 --> 0:09:51.796 Would you look to him for reassurance or did you 0:09:51.836 --> 0:09:53.596 were you just more avoidant. 0:09:54.436 --> 0:09:58.676 I think I was more avoidant in general, and I 0:09:58.756 --> 0:10:01.796 didn't want my bell's palsy to be something that was 0:10:01.836 --> 0:10:07.236 bothering me. It didn't correspond to my ethic of you know, 0:10:07.316 --> 0:10:10.996 human the human good, like it shouldn't matter, like beauty 0:10:10.996 --> 0:10:13.956 shouldn't matter, or symmetry shouldn't matter. So of course it 0:10:13.996 --> 0:10:18.116 didn't bother me. So I just I pretended it was 0:10:18.156 --> 0:10:22.316 not bothering me, and I pushed forward. But I think 0:10:22.356 --> 0:10:23.636 it was clearly bothering me. 0:10:24.436 --> 0:10:28.876 It's such a relatable feeling an irrational or intellectual level. 0:10:28.956 --> 0:10:32.916 If we interrogate that emotional reaction, might think, no, that's 0:10:32.956 --> 0:10:35.316 not how I really feel. That wouldn't be my top concern. 0:10:35.516 --> 0:10:40.276 But it feels irresistible to have those sorts of thoughts. 0:10:41.356 --> 0:10:45.836 I love what you say about it being irresistible. It's visceral, 0:10:46.556 --> 0:10:50.156 and I think, as a writer and a feminist and 0:10:50.196 --> 0:10:54.236 someone who doesn't put a lot of stock and physical 0:10:54.276 --> 0:10:59.756 beauty certainly as a part of character, I think there 0:10:59.876 --> 0:11:04.516 was another part of me that really denied the reality 0:11:04.996 --> 0:11:10.316 of those irresistible thoughts because they weren't rational, because I 0:11:10.356 --> 0:11:14.276 didn't believe them, and because I didn't believe my own thoughts. 0:11:14.716 --> 0:11:17.996 I dismissed them. But the longer and longer the Bell's 0:11:18.036 --> 0:11:22.276 palsy went on, it became harder and harder to discount 0:11:22.636 --> 0:11:24.636 my own experience of it. 0:11:25.116 --> 0:11:27.956 Yeah, yeah, we don't believe them because they don't align 0:11:28.076 --> 0:11:31.156 with how we prefer to see the world, how we 0:11:31.196 --> 0:11:34.556 ought to see the world right, if we design the 0:11:34.596 --> 0:11:37.596 moral code or the values code right for the universe. 0:11:37.716 --> 0:11:41.036 And I mean, it's so interesting you share this, Sarah, 0:11:41.116 --> 0:11:45.196 because one of the things that I've learned from all 0:11:45.236 --> 0:11:48.156 the conversations I've had on this show is how much 0:11:48.356 --> 0:11:52.636 these moments of change can reveal to us about who 0:11:52.676 --> 0:11:55.596 we are and the assumptions we've been laboring under that 0:11:55.716 --> 0:12:01.236 might not have been visible to us prior. Yes, you know, 0:12:01.316 --> 0:12:06.116 the doctor tells you, okay, the majority of people recover 0:12:06.676 --> 0:12:09.636 without any intervention, right without any medical treatment, and so 0:12:10.476 --> 0:12:15.076 the odds were in your favor. And I'm curious to 0:12:15.156 --> 0:12:19.796 know when the weeks and months passed and you weren't 0:12:20.036 --> 0:12:24.436 showing progress what that felt like for you. 0:12:26.956 --> 0:12:32.956 It was kind of like a slow nightmare, you know, 0:12:33.076 --> 0:12:37.076 because every day you think, oh, surely tomorrow I'll be better, 0:12:37.796 --> 0:12:39.836 and I would dream of being better. At night, I 0:12:39.836 --> 0:12:42.356 would dream that my face was quote unquote normal or 0:12:42.436 --> 0:12:44.196 back to the way it was, and I'd wake up 0:12:44.636 --> 0:12:47.636 and there'd be no change. I eventually went back to 0:12:47.676 --> 0:12:51.436 the neurologist, I think when it had been maybe six months, 0:12:52.076 --> 0:12:54.636 and I really should have been better by then, you know, 0:12:54.796 --> 0:12:56.956 if I was to get better, I should have been 0:12:56.996 --> 0:13:00.716 better by then. And he was quite oddly punitive. I 0:13:00.756 --> 0:13:03.436 felt and sort of looked at me and said, God, 0:13:03.676 --> 0:13:07.436 you're not better at all. Oh gosh. And he said, yeah, 0:13:07.476 --> 0:13:11.116 there's nothing you can do except experimental neurosurgery. That's it. 0:13:11.916 --> 0:13:15.116 And he gave me the name of an experimental neurosurgeon 0:13:15.156 --> 0:13:19.436 at NYU. And they do these like grafts, like take 0:13:19.516 --> 0:13:21.716 a little bit of your thigh and stick it in 0:13:21.756 --> 0:13:24.876 your face and try to graph the nerve actora. It's 0:13:24.956 --> 0:13:29.196 really amazing work that they can do. But I felt 0:13:29.236 --> 0:13:33.236 like being a writer and depending so much on my brain. 0:13:34.196 --> 0:13:39.476 The compound noun experimental and neurosurgery, I just didn't want 0:13:39.476 --> 0:13:43.756 anything to do with those two words mixed together. But yeah, 0:13:43.796 --> 0:13:46.796 emotionally the experience of just being in that stasis, I 0:13:47.076 --> 0:13:49.116 just felt frozen. 0:13:52.916 --> 0:13:55.196 We'll be back in a moment with a slight change 0:13:55.196 --> 0:14:11.396 of plans. Sarah Rule was in her mid thirties when 0:14:11.396 --> 0:14:13.876 she developed Bell's palsy and the left side of her 0:14:13.916 --> 0:14:17.996 face became paralyzed. She details her experience with the condition 0:14:18.276 --> 0:14:22.556 in a heartfelt, an often funny memoir called Smile. I 0:14:22.636 --> 0:14:25.036 was curious to know more about how Sarah coped day 0:14:25.076 --> 0:14:28.276 to day, given that she was showing little improvement. I 0:14:28.316 --> 0:14:30.996 also wanted to hear if her relationship with her condition 0:14:31.316 --> 0:14:34.996 changed over the years. There's this moment in your book 0:14:35.196 --> 0:14:40.276 where I found myself laughing. You were trying to find 0:14:40.316 --> 0:14:43.316 a way forward and to keep your spirits and you're 0:14:43.356 --> 0:14:47.476 morale high, and you read this Buddhist book about anger. 0:14:47.996 --> 0:14:50.356 Yeah, I mean I was. You know, I would try 0:14:50.396 --> 0:14:52.916 to meditate, I would try to read inspiring books. So 0:14:52.956 --> 0:14:56.436 this was by Tik Nahan, who I love. And I 0:14:56.516 --> 0:15:00.756 got to a part where it's you know, whatever you're 0:15:00.796 --> 0:15:04.236 going through, you can always smile. So as you meditate, 0:15:04.956 --> 0:15:08.196 sit and smile and think of your smile, and think 0:15:08.236 --> 0:15:10.036 of the beauty of your smile, and how you can 0:15:10.156 --> 0:15:12.716 always give someone else the beauty of your smile. And 0:15:12.756 --> 0:15:16.476 I just thought, oh my god, I can't. I actually 0:15:16.516 --> 0:15:19.316 I can't, and I think I threw the book across 0:15:19.316 --> 0:15:19.676 the room. 0:15:21.716 --> 0:15:24.196 It's like, uh, dude, I also can't do that very 0:15:24.196 --> 0:15:26.436 basic thing you're telling me that I should do. Oh 0:15:26.516 --> 0:15:30.356 my gosh, I love that. Did you find some solace 0:15:30.476 --> 0:15:33.356 anywhere in terms of like you say in your book 0:15:33.356 --> 0:15:35.756 that you tend to solve problems by reading books, right, 0:15:35.796 --> 0:15:37.636 and so I do wonder if there was any wisdom 0:15:37.756 --> 0:15:41.156 that you were accruing along the way that helped you 0:15:41.236 --> 0:15:42.996 keep morel high. 0:15:43.236 --> 0:15:49.036 I was reading tons of books about Tibetan Buddhism and dharma, 0:15:49.076 --> 0:15:52.516 and I do think they helped me. But I think 0:15:54.476 --> 0:15:58.756 I needed people, and I think I didn't understand that. 0:15:59.356 --> 0:16:02.916 It's such a simple thing. Why I didn't understand that 0:16:03.116 --> 0:16:07.556 is puzzling to me now. But writers can be funny creatures. 0:16:08.316 --> 0:16:12.316 I didn't realize that you'd been isolating more generally from 0:16:12.356 --> 0:16:14.236 other people. Tell me more about that. 0:16:15.636 --> 0:16:19.636 I don't think it was terribly conscious. But you know, 0:16:19.836 --> 0:16:22.356 my work is demanding, so I would throw myself into 0:16:22.396 --> 0:16:24.516 my work, and my kids were demanding, so I threw 0:16:24.556 --> 0:16:29.036 myself into that, and I think I didn't I certainly 0:16:29.036 --> 0:16:32.596 didn't want to meet new people very often, but I 0:16:32.636 --> 0:16:36.596 think with old friends, I did see them, but they 0:16:36.636 --> 0:16:39.756 had no idea what my internal state was. And that's 0:16:39.796 --> 0:16:44.036 how I wanted it, because I didn't want them worrying 0:16:44.036 --> 0:16:48.836 about me. I didn't want them to know what I 0:16:48.916 --> 0:16:51.196 was feeling. I was sort of stoic about the whole thing. 0:16:52.836 --> 0:16:56.436 And so when I was writing the book, I finally 0:16:56.516 --> 0:16:59.316 had the courage to reach out to this other writer, 0:16:59.516 --> 0:17:02.276 Jonathan cawb, who'd written a New Yorker piece about having 0:17:02.276 --> 0:17:06.236 Bell's palsy, and under the pretext of doing research, I said, 0:17:06.316 --> 0:17:10.036 let's have lunch. And meeting Jonathan and talking about our 0:17:10.036 --> 0:17:13.116 experience and also just seeing each other's faces while we 0:17:13.116 --> 0:17:16.756 were eating and the challenges we were both navigating was 0:17:16.796 --> 0:17:22.276 more healing to me than reading fifty books. He would laugh, 0:17:22.316 --> 0:17:24.436 but he would turn away from me when he laughed 0:17:24.556 --> 0:17:27.596 because he didn't want to look asymmetrical when he laughed. 0:17:27.596 --> 0:17:31.116 I knew that because I did that. And when a 0:17:31.236 --> 0:17:33.396 dumpling exploded in his mouth because it can be hard 0:17:33.396 --> 0:17:36.636 to eat with Bell's palsy, he excused himself and used 0:17:36.676 --> 0:17:39.756 a napkin, and I knew that because those things had 0:17:39.796 --> 0:17:42.636 happened to me, and it was sort of the fact 0:17:42.876 --> 0:17:48.556 of mirroring each other and knowing what it felt like 0:17:49.036 --> 0:17:54.076 to eat with a stranger under those conditions, and I 0:17:54.116 --> 0:18:00.956 felt such compassion for him, and in feeling compassion for him, 0:18:01.316 --> 0:18:03.516 I allowed some compassion and for myself. 0:18:04.356 --> 0:18:11.836 Yeah, help unpack for me, Sarah, You're relationship with recovery 0:18:11.876 --> 0:18:16.516 in the early years, you were very non interventionist, right, 0:18:16.636 --> 0:18:20.356 so you weren't aggressive about treatment in the way that 0:18:20.596 --> 0:18:22.276 I feel like a lot of people would have been. 0:18:22.556 --> 0:18:25.076 We all have different instincts when it comes to how 0:18:25.076 --> 0:18:27.796 we try and exert control when we don't feel like 0:18:27.836 --> 0:18:30.156 we have a grip of the steering wheel. And what's 0:18:30.196 --> 0:18:33.756 interesting to me about your story is that, despite feeling 0:18:34.436 --> 0:18:37.036 very frustrated with the fact that you weren't seeing progress, 0:18:37.716 --> 0:18:40.716 the manifestation of that was not let me keep googling, 0:18:40.796 --> 0:18:43.276 let me keep seeing doctors. I mean, you didn't even 0:18:43.356 --> 0:18:46.476 google your condition for the first two years, which is 0:18:46.716 --> 0:18:50.556 just wild to me. So help me understand that. 0:18:52.156 --> 0:18:54.916 Well, for one thing, I think I was afraid that 0:18:54.956 --> 0:18:57.276 if I googled it, it would just tell me you're 0:18:57.316 --> 0:19:00.316 never getting better. Like, if you don't see improvement within 0:19:00.396 --> 0:19:03.476 six months, you'll never get better, and I didn't want 0:19:03.516 --> 0:19:08.956 to see that answer. I come from a medical family. 0:19:09.436 --> 0:19:13.196 My grandfather was a doctor, my sister's a doctor, my 0:19:13.316 --> 0:19:16.716 uncle's aor my husband's a doctor. So I think I 0:19:16.796 --> 0:19:20.236 have an implicit trust in doctors. So when the neurologist 0:19:20.316 --> 0:19:23.036 I saw said the one thing I can do is 0:19:23.076 --> 0:19:26.116 experimental neurosurgery, and I don't want to do that, so 0:19:26.196 --> 0:19:29.676 I guess there's nothing else to do. I just accepted it. 0:19:30.436 --> 0:19:33.636 I did go to acupuncture, and that gave me a 0:19:33.636 --> 0:19:37.196 lot of relief. I did get my ability to blink back, 0:19:37.836 --> 0:19:41.436 and I did eventually get second opinions from different neurologists. 0:19:42.076 --> 0:19:47.836 But I think because I'd been told that it was 0:19:48.036 --> 0:19:51.436 mysterious and some people recovered and some didn't in a 0:19:52.036 --> 0:19:55.036 really bizarre, fairy tale way, I thought it was my 0:19:55.156 --> 0:19:57.876 fault that I wasn't getting better. I felt like a 0:19:57.956 --> 0:20:01.196 bad patient. I'd failed to get better. 0:20:02.516 --> 0:20:02.876 Yeah. 0:20:02.956 --> 0:20:07.356 I think that propensity for self blame is so characteristic 0:20:07.476 --> 0:20:11.636 of people who are dealing with chronic conditions, and I 0:20:11.676 --> 0:20:16.076 have to imagine women dealing with chronic conditions. Was there 0:20:16.116 --> 0:20:19.996 anything you found that helped to counteract that self blame? 0:20:21.796 --> 0:20:27.356 I think, in the end, accepting that something hard had 0:20:27.396 --> 0:20:33.036 happened to me was very helpful, as opposed to trivializing it. 0:20:33.996 --> 0:20:41.116 Saying that sucked or that sucks bluntly was very helpful. 0:20:41.156 --> 0:20:43.556 I remember I have an old friend who's a pediatrician 0:20:44.316 --> 0:20:50.996 who said something like, it's disappointing, isn't it what happened 0:20:50.996 --> 0:20:53.196 to you? She said, it's not a tragedy, but it 0:20:53.276 --> 0:20:57.676 must be really disappointing. I said, it is. It's really disappointing, 0:20:58.316 --> 0:21:02.396 and I felt really understood when she said that to me. 0:21:03.756 --> 0:21:07.036 She saw a couple things about me. She saw that 0:21:07.116 --> 0:21:11.916 I was disappointed. She also saw that I know something 0:21:11.956 --> 0:21:14.956 about the scale of tragedy, and she knows that I 0:21:14.996 --> 0:21:20.676 would never want to winge on about something that wasn't 0:21:20.836 --> 0:21:24.916 actually about the loss of life. For example, I mean, 0:21:24.916 --> 0:21:27.236 I lost my dad to cancer when I was twenty, 0:21:28.156 --> 0:21:34.556 and so chronic disease for me, it's like knowing you're 0:21:34.556 --> 0:21:36.956 not going to die from it is some comfort. 0:21:37.876 --> 0:21:41.756 Is there a moment that you remember where you for 0:21:41.836 --> 0:21:45.636 the first time felt comfortable with the acceptance of present 0:21:45.716 --> 0:21:49.356 day self versus trying to get the full function back. 0:21:50.636 --> 0:21:54.036 Well, I got enough of my smile back at a 0:21:54.076 --> 0:21:58.156 point that I felt I could communicate my social self 0:21:58.196 --> 0:22:01.516 to people. I could let people know I was smiling 0:22:01.556 --> 0:22:04.356 at them. That was huge, and in many ways that 0:22:04.356 --> 0:22:08.756 felt like enough. It wasn't a smile with teeth, it 0:22:08.796 --> 0:22:11.996 wasn't a glamorous smile, but it was enough to show 0:22:12.036 --> 0:22:16.996 people that I was communicating happiness. That was such a 0:22:17.116 --> 0:22:23.116 huge accomplishment In a way, I remember smiling at strangers 0:22:23.156 --> 0:22:25.196 for the first time and having them smile back at me, 0:22:25.356 --> 0:22:28.476 and having that call and response in a kind of 0:22:28.556 --> 0:22:34.316 natural way. Naturals may be the wrong word, a spontaneous way, 0:22:34.996 --> 0:22:37.196 you know, because before that I would think about every 0:22:37.556 --> 0:22:40.756 micro interaction where someone tried to smile at me and 0:22:40.796 --> 0:22:43.236 I felt I couldn't smile back. So when I could 0:22:43.276 --> 0:22:46.756 do that, that really did feel like enough to me, 0:22:47.076 --> 0:22:50.276 like enough to proceed, enough to go on. MM. 0:22:52.356 --> 0:22:56.676 In the decade plus that's past since your original diagnosis 0:22:56.716 --> 0:22:59.956 of Bell's palsy, you have less paralysis in the left 0:22:59.956 --> 0:23:03.116 side of your face, but you haven't regained full control right. 0:23:03.156 --> 0:23:06.636 There is some paralysis, and I'm curious if you can 0:23:06.716 --> 0:23:10.636 reflect on what aspect so that you still find difficult, 0:23:10.716 --> 0:23:13.236 if at all. 0:23:14.316 --> 0:23:20.196 I don't love being photographed, but beyond that, I don't 0:23:20.196 --> 0:23:23.716 think about it all that much anymore. There are moments 0:23:23.756 --> 0:23:27.396 where I would love to flash a big toothy smile 0:23:27.436 --> 0:23:31.916 at someone, you know, either to mirror their smile or 0:23:32.156 --> 0:23:35.956 just to express that deep joy. And sometimes I find 0:23:35.996 --> 0:23:49.396 that annoying. But I feel like I'm onto other things, 0:23:50.676 --> 0:23:52.356 you know. And I think there was a long time 0:23:52.356 --> 0:23:54.436 where I was stuck in a cul de sac around this, 0:23:54.716 --> 0:23:59.156 really stuck in a kind of despair shame spiral. And 0:23:59.236 --> 0:24:03.356 I feel like I've shot myself out of that little 0:24:03.396 --> 0:24:06.996 called a sack. I've proceeded onto new terrain. 0:24:07.636 --> 0:24:10.596 Do you think that's just Is it just the passage 0:24:10.596 --> 0:24:14.916 of time that's responsible for ejecting you from the spiral? 0:24:16.076 --> 0:24:18.716 I think it was the writing process that ejected me. 0:24:19.116 --> 0:24:21.676 And it's interesting because there was a point where I 0:24:21.676 --> 0:24:24.836 didn't want to write about it. I thought, oh ugh, yuck, 0:24:25.836 --> 0:24:29.036 I'm a writer. I don't write about my body. Who cares, 0:24:29.196 --> 0:24:31.916 you know? And I, you know, with encouragement and support, 0:24:31.996 --> 0:24:34.476 it turned out I had plenty to say about it, 0:24:34.676 --> 0:24:39.516 and I think making sense of what happened to me 0:24:41.516 --> 0:24:46.156 really helped me let it go. It was also because 0:24:46.196 --> 0:24:49.796 I spoke about my experience. It gave permission for others 0:24:49.796 --> 0:24:52.156 to ask me about it, not only strangers who had 0:24:52.156 --> 0:24:55.436 had Bell's palsy, but family who had said, I didn't 0:24:55.476 --> 0:24:59.396 know you were experiencing that. I'm so sorry, do you 0:24:59.476 --> 0:25:01.596 want to talk about it? It was I think I 0:25:01.716 --> 0:25:05.196 had given off a lack of permission to talk about 0:25:05.236 --> 0:25:09.036 my face, which makes sense because it's impolite to ask people. 0:25:10.236 --> 0:25:12.756 You know, in general, we don't go around saying, oh, 0:25:12.796 --> 0:25:14.676 it looks like you have facial paralysis. Do you want 0:25:14.716 --> 0:25:15.916 to talk about it? In the same way that we 0:25:15.916 --> 0:25:17.716 wouldn't say, like, oh, you have something in your teeth, 0:25:17.716 --> 0:25:20.476 you have something like unless there's a real intimacy, you 0:25:20.676 --> 0:25:26.676 don't mention her. Of course, so it became an invitation 0:25:26.876 --> 0:25:30.676 to dialogue that I think was healing. Even with my kids. 0:25:32.076 --> 0:25:35.716 My daughter had been Anna had been overhearing me talking 0:25:35.756 --> 0:25:40.116 to my editor about the book and a little bit 0:25:40.196 --> 0:25:44.436 she was overhearing about some depression I'd had as a 0:25:44.436 --> 0:25:47.196 result of the Bell's palsy, And afterwards I said, oh, sorry, Anne, 0:25:47.196 --> 0:25:49.916 I I was that okay for you to hear? And 0:25:49.956 --> 0:25:53.156