Pushkin.
It was like a slow nightmare, because every day you think, oh, surely tomorrow I'll be better, and I would dream of being better at night. I would dream that my face was quote unquote normal or back to the way it was, and I'd wake up and there'd be no change.
At age thirty six, writer Sarah Rule developed a severe case of facial paralysis. The left side of her face drooped, She couldn't blink or raise her eyebrows, and she could no longer smile.
You know, they say, like, oh, the eyes or the window of the soul. The face is the window to the soul. I mean, you look at what someone's emoting and you think you can read it. It's a big deal. So to lose a part of that social expression. I just felt frozen.
On today's episode what it's like to lose your smile. I'm Maya Shunker and this is a slight change of plans, a show about who we are and who we become in the face of a big change. Sarah Rule is a celebrated writer known for her popular plays, including the Pulitzer Prize finalists, The Clean House and In the Next Room. She excels at finding Poetry in Everyday Life and Hilarity and Tragedy. The facial paralysis Sarah developed is called called Bell's palsy. It's caused by damage to a nerve that
helps control the muscles in the face. It's unclear what causes the condition, but for Sarah, it happened right after she gave birth to twins. A lactation consultant was visiting Sarah at the hospital and noticed there was something unusual about Sarah's face.
She looked at me and she said, your eye looks a little droopy. And I thought, what a rude nurse, Like, I'm tired. I thought my eye must be droopy from fatigue, and she said, no, that's not what I mean. Go look in the mirror. So I got up, I put the baby down, I looked in the mirror, and indeed, my whole left face had fallen down.
When you first saw yourself in the mirror, what was your visceral reaction?
Right?
Like? What? How did that strike you?
It was really traumatic. It was like looking in the mirror and seeing another person, another future, not recognizing the self. It was very disturbing. And my husband is a doctor, he's a psychiatrist, so I called him and I think he was immediately worried that I had a stroke. So he said, get them to call a neurology consult and I'll be right over.
So when you found out that it wasn't a stroke and it was in fact Bell's palsy, I mean, how is that explained to you? And how did that make you feel?
So my first noural just didn't have the best bedside manner. You know. He did a number of tests on me to determine that it was Bell's palsy, and he just kind of said, we don't know why it comes, we don't know when it goes. We don't know whether you'll get better or not. You'll probably be better in three months and just go home and rest and take these
steroids and there's nothing else to do. My husband was with me, and the clearest memory I have is lying down in that little hospital bed with them, the narrow bed, him holding me and me crying and saying, I don't want to be ugly for you, and he said that could never be and he just kind of held me through the night.
Can you describe how your face changed? So following your diagnosis, what happened when you tried to smile.
So the one of the truly awful ironies of Bell's palsy is you start to recruit the wrong muscles. So sometimes when you smile, it actually looks like a grimace. My left side would go down when my right side would go up, and my eye would close. My left eye would close also while I was trying to smile, so it would look like you were like you were winking at someone and grimacing rather than smiling. Yeah, and smiling was the thing. I was most obsessed with people
reading my affect. And I think particularly because I had these little babies and I wanted to smile at them. And I also knew that their emotional coding was in a way getting wired, and that it's very important having your mother smile at you and your baby. And I felt like I couldn't tell if they could read my face as a smile. I mean, I can look at pictures of myself now from that time and I do look very blank, you know, very affectless. It just my face was like a mask.
Tell me about how your day to day life change. In those early weeks.
I stopped smiling at people because I didn't want them to misinterpret it how sad. I mean I stopped making an effort in those social interactions with strangers. If I had to, I would explain myself. So, for instance, I remember Anna, my oldest, being in kindergarten and having to meet the new parents and sort of explaining, if I don't seem friendly, it's because the left side of my face is paralyzed, and they would say, oh, okay, and
we'd move on. I felt like I tried to compensate by vocalizing more or making hand gestures, so if I saw a neighbor from far away, I would wave instead of smile to kind of mark a hello. And a lot of those were unconscious compensations. I didn't mean to do them. I just did them.
Yeah, what was your daughter Anna's reaction like, because she knew a version of you that it'd smiled right, or that had blinked with ease and moved her eyebrows, I mean, what was that interaction?
Like? It's funny. I was really worried about it. I was really worried that I'd come home with these two babies and she would have less attention and I would look different, And instead she completely accepted me. And would say, Oh, it's okay, mama. I see your trying, mama, See your mouth's going up a little. You know, she was really
completely accepting. And it's one thing I've reflected on through this whole process is that we think so much about the unconditional love parents have for children, but really it's extraordinary that it can go in the other direction too.
Yeah, what did you learn from that period of time about how important it is to facially emote? I mean, it is something we all take for granted, and in this moment, I'm just imagining being denied that.
In my worst moments, it felt like that's what it was to be human, and I was a ghost. In my best moments or my more resilient moments, I would think, well, I'm compensating. Yeah, wow, it strikes at the level of the soul. I think at the part of the soul that's relational. You know, they say like, oh, the eyes or the window of the soul. The face is the window to the soul. I mean, you look at what someone's emoting and you think you can read it. It's
a big deal. So to lose part of that social expression can be really nightmarish and Just for an example, I had a play opening at a church in Brooklyn, and my mom came with me and we were watching, and she kept looking over at me worried, and finally she whispered, what's wrong? Are you not pleased? And I was like, Mom, I can't smile. I'm pleased. And it was disturbing to me that even my own mother couldn't read my emotions.
Was what was it like with your husband? I mean, you had that vulnerable moment with him in the hospital where you were afraid of being unattractive to him, and you know he reassured you. But did you find your self changing in any way in terms of how you interacted with him in those early weeks and months.
I think I really retreated. In general. I was tired, so there was reason for it, but I think I retreated from family festivities and got quite depressed, and so I felt like the version of a partner he had was I felt inadequate in that way too, and like I wasn't giving enough. And it took me a couple of years to realize, oh, I really had a full blown, like postpartum depression.
Would you look to him for reassurance or did you were you just more avoidant.
I think I was more avoidant in general, and I didn't want my bell's palsy to be something that was bothering me. It didn't correspond to my ethic of you know, human the human good, like it shouldn't matter, like beauty shouldn't matter, or symmetry shouldn't matter. So of course it didn't bother me. So I just I pretended it was not bothering me, and I pushed forward. But I think it was clearly bothering me.
It's such a relatable feeling an irrational or intellectual level. If we interrogate that emotional reaction, might think, no, that's not how I really feel. That wouldn't be my top concern. But it feels irresistible to have those sorts of thoughts.
I love what you say about it being irresistible. It's visceral, and I think, as a writer and a feminist and someone who doesn't put a lot of stock and physical beauty certainly as a part of character, I think there was another part of me that really denied the reality of those irresistible thoughts because they weren't rational, because I didn't believe them, and because I didn't believe my own thoughts.
I dismissed them. But the longer and longer the Bell's palsy went on, it became harder and harder to discount my own experience of it.
Yeah, yeah, we don't believe them because they don't align with how we prefer to see the world, how we ought to see the world right, if we design the moral code or the values code right for the universe. And I mean, it's so interesting you share this, Sarah, because one of the things that I've learned from all the conversations I've had on this show is how much these moments of change can reveal to us about who we are and the assumptions we've been laboring under that
might not have been visible to us prior. Yes, you know, the doctor tells you, okay, the majority of people recover without any intervention, right without any medical treatment, and so the odds were in your favor. And I'm curious to know when the weeks and months passed and you weren't showing progress what that felt like for you.
It was kind of like a slow nightmare, you know, because every day you think, oh, surely tomorrow I'll be better, and I would dream of being better. At night, I would dream that my face was quote unquote normal or back to the way it was, and I'd wake up and there'd be no change. I eventually went back to the neurologist, I think when it had been maybe six months, and I really should have been better by then, you know, if I was to get better, I should have been
better by then. And he was quite oddly punitive. I felt and sort of looked at me and said, God, you're not better at all. Oh gosh. And he said, yeah, there's nothing you can do except experimental neurosurgery. That's it. And he gave me the name of an experimental neurosurgeon at NYU. And they do these like grafts, like take a little bit of your thigh and stick it in your face and try to graph the nerve actora. It's
really amazing work that they can do. But I felt like being a writer and depending so much on my brain. The compound noun experimental and neurosurgery, I just didn't want anything to do with those two words mixed together. But yeah, emotionally the experience of just being in that stasis, I just felt frozen.
We'll be back in a moment with a slight change of plans. Sarah Rule was in her mid thirties when she developed Bell's palsy and the left side of her face became paralyzed. She details her experience with the condition in a heartfelt, an often funny memoir called Smile. I was curious to know more about how Sarah coped day to day, given that she was showing little improvement. I also wanted to hear if her relationship with her condition changed over the years. There's this moment in your book
where I found myself laughing. You were trying to find a way forward and to keep your spirits and you're morale high, and you read this Buddhist book about anger.
Yeah, I mean I was. You know, I would try to meditate, I would try to read inspiring books. So this was by Tik Nahan, who I love. And I got to a part where it's you know, whatever you're going through, you can always smile. So as you meditate, sit and smile and think of your smile, and think of the beauty of your smile, and how you can always give someone else the beauty of your smile. And I just thought, oh my god, I can't. I actually I can't, and I think I threw the book across the room.
It's like, uh, dude, I also can't do that very basic thing you're telling me that I should do. Oh my gosh, I love that. Did you find some solace anywhere in terms of like you say in your book that you tend to solve problems by reading books, right, and so I do wonder if there was any wisdom that you were accruing along the way that helped you keep morel high.
I was reading tons of books about Tibetan Buddhism and dharma, and I do think they helped me. But I think I needed people, and I think I didn't understand that. It's such a simple thing. Why I didn't understand that is puzzling to me now. But writers can be funny creatures.
I didn't realize that you'd been isolating more generally from other people. Tell me more about that.
I don't think it was terribly conscious. But you know, my work is demanding, so I would throw myself into my work, and my kids were demanding, so I threw myself into that, and I think I didn't I certainly didn't want to meet new people very often, but I think with old friends, I did see them, but they had no idea what my internal state was. And that's how I wanted it, because I didn't want them worrying about me. I didn't want them to know what I
was feeling. I was sort of stoic about the whole thing. And so when I was writing the book, I finally had the courage to reach out to this other writer, Jonathan cawb, who'd written a New Yorker piece about having Bell's palsy, and under the pretext of doing research, I said, let's have lunch. And meeting Jonathan and talking about our experience and also just seeing each other's faces while we were eating and the challenges we were both navigating was
more healing to me than reading fifty books. He would laugh, but he would turn away from me when he laughed because he didn't want to look asymmetrical when he laughed.
I knew that because I did that. And when a dumpling exploded in his mouth because it can be hard to eat with Bell's palsy, he excused himself and used a napkin, and I knew that because those things had happened to me, and it was sort of the fact of mirroring each other and knowing what it felt like to eat with a stranger under those conditions, and I felt such compassion for him, and in feeling compassion for him, I allowed some compassion and for myself.
Yeah, help unpack for me, Sarah, You're relationship with recovery in the early years, you were very non interventionist, right, so you weren't aggressive about treatment in the way that I feel like a lot of people would have been. We all have different instincts when it comes to how we try and exert control when we don't feel like
we have a grip of the steering wheel. And what's interesting to me about your story is that, despite feeling very frustrated with the fact that you weren't seeing progress, the manifestation of that was not let me keep googling, let me keep seeing doctors. I mean, you didn't even google your condition for the first two years, which is just wild to me. So help me understand that.
Well, for one thing, I think I was afraid that if I googled it, it would just tell me you're never getting better. Like, if you don't see improvement within six months, you'll never get better, and I didn't want to see that answer. I come from a medical family. My grandfather was a doctor, my sister's a doctor, my uncle's aor my husband's a doctor. So I think I
have an implicit trust in doctors. So when the neurologist I saw said the one thing I can do is experimental neurosurgery, and I don't want to do that, so I guess there's nothing else to do. I just accepted it. I did go to acupuncture, and that gave me a lot of relief. I did get my ability to blink back, and I did eventually get second opinions from different neurologists.
But I think because I'd been told that it was mysterious and some people recovered and some didn't in a really bizarre, fairy tale way, I thought it was my fault that I wasn't getting better. I felt like a bad patient. I'd failed to get better.
Yeah.
I think that propensity for self blame is so characteristic of people who are dealing with chronic conditions, and I have to imagine women dealing with chronic conditions. Was there anything you found that helped to counteract that self blame?
I think, in the end, accepting that something hard had happened to me was very helpful, as opposed to trivializing it. Saying that sucked or that sucks bluntly was very helpful. I remember I have an old friend who's a pediatrician who said something like, it's disappointing, isn't it what happened to you? She said, it's not a tragedy, but it must be really disappointing. I said, it is. It's really disappointing, and I felt really understood when she said that to me.
She saw a couple things about me. She saw that I was disappointed. She also saw that I know something about the scale of tragedy, and she knows that I would never want to winge on about something that wasn't actually about the loss of life. For example, I mean, I lost my dad to cancer when I was twenty, and so chronic disease for me, it's like knowing you're not going to die from it is some comfort.
Is there a moment that you remember where you for the first time felt comfortable with the acceptance of present day self versus trying to get the full function back.
Well, I got enough of my smile back at a point that I felt I could communicate my social self to people. I could let people know I was smiling at them. That was huge, and in many ways that felt like enough. It wasn't a smile with teeth, it wasn't a glamorous smile, but it was enough to show
people that I was communicating happiness. That was such a huge accomplishment In a way, I remember smiling at strangers for the first time and having them smile back at me, and having that call and response in a kind of natural way. Naturals may be the wrong word, a spontaneous way, you know, because before that I would think about every micro interaction where someone tried to smile at me and I felt I couldn't smile back. So when I could do that, that really did feel like enough to me,
like enough to proceed, enough to go on. MM.
In the decade plus that's past since your original diagnosis of Bell's palsy, you have less paralysis in the left side of your face, but you haven't regained full control right. There is some paralysis, and I'm curious if you can reflect on what aspect so that you still find difficult, if at all.
I don't love being photographed, but beyond that, I don't think about it all that much anymore. There are moments where I would love to flash a big toothy smile at someone, you know, either to mirror their smile or just to express that deep joy. And sometimes I find that annoying. But I feel like I'm onto other things, you know. And I think there was a long time where I was stuck in a cul de sac around this,
really stuck in a kind of despair shame spiral. And I feel like I've shot myself out of that little called a sack. I've proceeded onto new terrain.
Do you think that's just Is it just the passage of time that's responsible for ejecting you from the spiral?
I think it was the writing process that ejected me. And it's interesting because there was a point where I didn't want to write about it. I thought, oh ugh, yuck, I'm a writer. I don't write about my body. Who cares, you know? And I, you know, with encouragement and support, it turned out I had plenty to say about it, and I think making sense of what happened to me really helped me let it go. It was also because
I spoke about my experience. It gave permission for others to ask me about it, not only strangers who had had Bell's palsy, but family who had said, I didn't know you were experiencing that. I'm so sorry, do you want to talk about it? It was I think I had given off a lack of permission to talk about my face, which makes sense because it's impolite to ask people. You know, in general, we don't go around saying, oh, it looks like you have facial paralysis. Do you want
to talk about it? In the same way that we wouldn't say, like, oh, you have something in your teeth, you have something like unless there's a real intimacy, you don't mention her. Of course, so it became an invitation to dialogue that I think was healing. Even with my kids. My daughter had been Anna had been overhearing me talking to my editor about the book and a little bit she was overhearing about some depression I'd had as a result of the Bell's palsy, And afterwards I said, oh, sorry, Anne,
I I was that okay for you to hear? And she said, you know how I've always thought of your face, And I said, no, how and she said, I've always thought of it kind of like a house. Your face was this beautiful house, and the left side fell down one day, and you kept trying to build it up, brick by brick. You kept try and you couldn't quite. But when I look at your face, all I see
is my home. I don't see a broken house. And I just thought, Wow, if it took me writing that whole book to hear Anna reflect that back to me, you know, it would have been worth it.
Hey, thanks so much for listening. Join me next week when I talk with writer Jennifer Ramalini. For so long, Jennifer prided herself on her work ethic, climbing to the top of every corporate ladder and working herself to the bone, But after years of burning herself out, she realized her ambition had turned toxic.
I've really looked to the outside world like I had everything, but I was already at the top of that going wait, is this it? Because I had not been building my personal and life resume at the same pace that I had been building my professional resume, so my life was completely unbalanced.
That's next week on a slight change of plans, A slight change of Plans is created, written, and executive produced by me Maya Schunker. The Slight Change family includes our showrunner Tyler Green, our senior producer Kate Parkinson Morgan, our producer Brianna Garrett, and our engineer Eric Iwuang. Louis Gara wrote our delightful theme song and Ginger Smith helped arrange
the vocals. A Slight Change of Plans is a production of Pushkin Industries, so a big thanks to everyone there, and of course a very special thanks to Jimmy Lee. You can follow A Slight Change of Plans on Instagram at doctor Maya Schunker. See you next week.