November 11, 2024 • 28 mins
Soon after giving birth, writer Sarah Ruhl 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. Sarah shares what it was like to lose her smile and how her relationship to her face, and with her loved ones, has changed over the years.
You can follow Maya @DrMayaShankar on Instagram.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:14):
Pushkin.
Speaker 2 (00:30):
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.
Speaker 1 (00:48):
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.
Speaker 2 (01:01):
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.
Speaker 1 (01:25):
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
(01:52):
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
(02:12):
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.
Speaker 2 (02:28):
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.
Speaker 1 (02:48):
When you first saw yourself in the mirror, what was
your visceral reaction?
Speaker 2 (02:53):
Right?
Speaker 1 (02:53):
Like? What? How did that strike you?
Speaker 2 (02:56):
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
(03:19):
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.
Speaker 1 (03:26):
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?
Speaker 2 (03:39):
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
(04:02):
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.
Speaker 1 (04:22):
Can you describe how your face changed? So following your diagnosis,
what happened when you tried to smile.
Speaker 2 (04:30):
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,
(04:50):
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
(05:12):
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.
Speaker 1 (05:34):
Tell me about how your day to day life change.
In those early weeks.
Speaker 2 (05:41):
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
(06:02):
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
(06:24):
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.
Speaker 1 (06:32):
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?
Speaker 2 (06:43):
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
(07:04):
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.
Speaker 1 (07:24):
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.
Speaker 2 (07:41):
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
(08:06):
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
(08:27):
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
(08:50):
was disturbing to me that even my own mother couldn't
read my emotions.
Speaker 1 (08:58):
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.
Speaker 2 (09:15):
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
(09:38):
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.
Speaker 1 (09:48):
Would you look to him for reassurance or did you
were you just more avoidant.
Speaker 2 (09:54):
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
(10:18):
not bothering me, and I pushed forward. But I think
it was clearly bothering me.
Speaker 1 (10:24):
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.
Speaker 2 (10:41):
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
(11:04):
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.
Speaker 1 (11:25):
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
(11:45):
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
(12:06):
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.
Speaker 2 (12:26):
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
(12:47):
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.
(13:11):
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.
(13:34):
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.
Speaker 1 (13:52):
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
(14:13):
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
(14:35):
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.
Speaker 2 (14:47):
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
(15:08):
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.
Speaker 1 (15:21):
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.
Speaker 2 (15:43):
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.
Speaker 1 (16:08):
I didn't realize that you'd been isolating more generally from
other people. Tell me more about that.
Speaker 2 (16:15):
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
(16:36):
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,
(16:59):
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,
(17:22):
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
(17:42):
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.
Speaker 1 (18:04):
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
(18:25):
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
(18:46):
just wild to me. So help me understand that.
Speaker 2 (18:52):
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
(19:13):
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
(19:33):
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
(19:55):
fault that I wasn't getting better. I felt like a
bad patient. I'd failed to get better.
Speaker 3 (20:02):
Yeah.
Speaker 1 (20:02):
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?
Speaker 2 (20:21):
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
(20:44):
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
(21:07):
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,
(21:28):
and so chronic disease for me, it's like knowing you're
not going to die from it is some comfort.
Speaker 1 (21:37):
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.
Speaker 2 (21:50):
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
(22:12):
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,
(22:34):
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.
Speaker 1 (22:52):
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.
Speaker 2 (23:14):
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
(23:35):
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
(23:59):
I feel like I've shot myself out of that little
called a sack. I've proceeded onto new terrain.
Speaker 1 (24:07):
Do you think that's just Is it just the passage
of time that's responsible for ejecting you from the spiral?
Speaker 2 (24:16):
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
(24:41):
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
(25:01):
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
(25:26):
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,
(25:47):
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,
(26:07):
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.
Speaker 1 (26:51):
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.
Speaker 3 (27:11):
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
(27:32):
completely unbalanced.
Speaker 1 (27:33):
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
(27:58):
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
(28:20):
at doctor Maya Schunker. See you next week.
Pushkin.
Speaker 2 (00:30):
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.
Speaker 1 (00:48):
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.
Speaker 2 (01:01):
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.
Speaker 1 (01:25):
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
(01:52):
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
(02:12):
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.
Speaker 2 (02:28):
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.
Speaker 1 (02:48):
When you first saw yourself in the mirror, what was
your visceral reaction?
Speaker 2 (02:53):
Right?
Speaker 1 (02:53):
Like? What? How did that strike you?
Speaker 2 (02:56):
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
(03:19):
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.
Speaker 1 (03:26):
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?
Speaker 2 (03:39):
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
(04:02):
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.
Speaker 1 (04:22):
Can you describe how your face changed? So following your diagnosis,
what happened when you tried to smile.
Speaker 2 (04:30):
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,
(04:50):
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
(05:12):
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.
Speaker 1 (05:34):
Tell me about how your day to day life change.
In those early weeks.
Speaker 2 (05:41):
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
(06:02):
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
(06:24):
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.
Speaker 1 (06:32):
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?
Speaker 2 (06:43):
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
(07:04):
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.
Speaker 1 (07:24):
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.
Speaker 2 (07:41):
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
(08:06):
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
(08:27):
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
(08:50):
was disturbing to me that even my own mother couldn't
read my emotions.
Speaker 1 (08:58):
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.
Speaker 2 (09:15):
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
(09:38):
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.
Speaker 1 (09:48):
Would you look to him for reassurance or did you
were you just more avoidant.
Speaker 2 (09:54):
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
(10:18):
not bothering me, and I pushed forward. But I think
it was clearly bothering me.
Speaker 1 (10:24):
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.
Speaker 2 (10:41):
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
(11:04):
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.
Speaker 1 (11:25):
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
(11:45):
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
(12:06):
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.
Speaker 2 (12:26):
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
(12:47):
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.
(13:11):
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.
(13:34):
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.
Speaker 1 (13:52):
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
(14:13):
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
(14:35):
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.
Speaker 2 (14:47):
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
(15:08):
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.
Speaker 1 (15:21):
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.
Speaker 2 (15:43):
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.
Speaker 1 (16:08):
I didn't realize that you'd been isolating more generally from
other people. Tell me more about that.
Speaker 2 (16:15):
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
(16:36):
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,
(16:59):
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,
(17:22):
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
(17:42):
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.
Speaker 1 (18:04):
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
(18:25):
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
(18:46):
just wild to me. So help me understand that.
Speaker 2 (18:52):
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
(19:13):
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
(19:33):
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
(19:55):
fault that I wasn't getting better. I felt like a
bad patient. I'd failed to get better.
Speaker 3 (20:02):
Yeah.
Speaker 1 (20:02):
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?
Speaker 2 (20:21):
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
(20:44):
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
(21:07):
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,
(21:28):
and so chronic disease for me, it's like knowing you're
not going to die from it is some comfort.
Speaker 1 (21:37):
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.
Speaker 2 (21:50):
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
(22:12):
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,
(22:34):
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.
Speaker 1 (22:52):
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.
Speaker 2 (23:14):
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
(23:35):
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
(23:59):
I feel like I've shot myself out of that little
called a sack. I've proceeded onto new terrain.
Speaker 1 (24:07):
Do you think that's just Is it just the passage
of time that's responsible for ejecting you from the spiral?
Speaker 2 (24:16):
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
(24:41):
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
(25:01):
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
(25:26):
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,
(25:47):
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,
(26:07):
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.
Speaker 1 (26:51):
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.
Speaker 3 (27:11):
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
(27:32):
completely unbalanced.
Speaker 1 (27:33):
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
(27:58):
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
(28:20):
at doctor Maya Schunker. See you next week.
Host
Dr. Maya Shankar
Popular Podcasts
40s and Free Agents: NFL Draft Season
Daniel Jeremiah of Move the Sticks and Gregg Rosenthal of NFL Daily join forces to break down every team's needs this offseason.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
The Bobby Bones Show
Listen to 'The Bobby Bones Show' by downloading the daily full replay.