Everyone seemed jubilant when I announced that I was expecting twins; I, myself, was overwhelmed. I was also expecting a play I’d written to be performed on Broadway in five months and was nervous about the potential collision of two kinds of abundance. I worried that I wouldn’t be able to give enough attention to my three-year-old, Anna. I feared that my body wouldn’t tolerate two babies; I feared that my writing wouldn’t survive three children.
I called my mother with the news. I gave off a scent of “How can this have happened?”
My mother paused, then said, “Well, your great-aunt Laura had twins.”
“Why didn’t I know?” I asked.
“They were stillborn,” she said.
I thought of my great-aunt Laura’s babies, buried on some grassy plain in Iowa, throughout my complicated pregnancy. I bled; I was put on bed rest. I itched, intractably. I learned I had a condition called cholestasis of the liver, which involves nonstop itching, but worse – the bile leaking into my bloodstream could immediately kill the babies. Miraculously, the twins were delivered healthy at the razor’s edge of 36 weeks. The nurses lay Hope and William on the bassinet, and before I held them, they held each other’s hands.
Two days later, the lactation consultant came to see how the babies were feeding. My mother was in the corner, holding one baby, while I breastfed the other. The patient lactation consultant was trying to teach me how to feed both babies at the same time, using the “football hold”. Then the lactation consultant looked at me curiously. “Your eye looks droopy,” she said.
Taken aback by the apparent non sequitur and comment on my appearance, I tried a joke. “Yes, my eyes are a little droopy,” I acknowledged. “I’m Irish.” Many of my ancestors, after one or two gin and tonics, look sleepy, so crinkled and heavy do their crescent eyes become.
“That’s not what I mean,” she said, kind but firm. “Go look in the mirror.”
I got up to look in the mirror in the bathroom. The left half of my face had fallen down. Eyebrow, fallen; eyelid, fallen; lip, fallen, frozen, immovable. A stroke? I was astonished – my face hadn’t felt any different before I looked in the mirror. Before looking in the mirror, I was the same person. After looking in the mirror, entirely different. I tried to move my face. Impossible. Puppet face, strings cut.
I came out of the bathroom; my mother saw my face and was alarmed. I called my husband, Tony, and told him that I couldn’t move the left side of my face. He told me to call the obstetrician immediately and have him call a neurologist. Then he said, “I’ll be over in 10 minutes.”
Tony is a doctor, a child psychiatrist. Though his voice was calm on the phone, I knew that he thought I may have had a stroke. I am the granddaughter of a doctor, the sister of a doctor, the niece of two doctors and the wife of a doctor, so I speculated that either I’d had a stroke or I had Bell’s palsy (unexplained facial paralysis). I am bad at science but I have differential diagnosis in the blood. Perhaps more important, my mother had Bell’s palsy when she was in her 50s, so I knew, and she knew, what it looked like.
A neurologist came in. He asked me to try to lift my eyebrows. I could lift one but not the other. He asked if I heard a ringing in my left ear. When I said that I did, he seemed relieved. He diagnosed Bell’s palsy. Apparently, people who have had a stroke can lift their foreheads fine, but they can’t smile or show their teeth; people with Bell’s palsy cannot lift their foreheads. A Bell’s sufferer might have muffled hearing, hear a tinny sound, or find loud noises unbearable.
I asked the neurologist if the Bell’s palsy would go away; he said sometimes it does and sometimes it doesn’t, there is no way of knowing. That was not terribly comforting. But I was relieved not to have had a stroke. The efficient, steroid-prescribing, short-of-stature, short-on-advice doctor left the room.
That night I cried in the hospital bed and wept into Tony’s chest. “I’d rather not be ugly for you,” I said. I consider my husband a handsome man.
“You never will be,” he said.
And he held me.
Sir Charles Bell, anatomist, artist and surgeon, provided his name to Bell’s palsy in the 1820s. But Bell was not the first doctor to describe paralysis of the seventh cranial nerve. The Greeks, the Romans and the Persians all noticed a condition whereby the forehead could not wrinkle, the face was paralysed on one side and facial spasms occurred. In contemporary western medicine there is not a lot you can do to treat Bell’s palsy; doctors generally give you steroids, and then you wait for the nerve to grow back. It’s not clear whether Bell’s is caused by a virus or by a biomechanical process that compresses the nerve, such as pregnancy.
I have since learned that a very attentive doctor at the onset of illness will automatically prescribe antivirals (many Bell’s cases are caused by a herpes virus), will also test for Lyme disease (a large percentage of cases of facial paralysis are caused by Lyme). This attentive doctor will also prescribe physical therapy and tell you to eat plenty of antioxidants. My doctor did none of these things. Sometimes the nerve grows back completely, sometimes incompletely, and sometimes it doesn’t grow back at all, with or without treatment.
Doctors don’t really know why you get Bell’s palsy (though postpartum women often do), and they don’t really know if you will get better – this is what medicine calls an idiopathic disease. Doctors hope that patients will fall into the majority of cases that get better quickly on their own. The wide range of outcomes can disorient the patient; either I will completely recover in three weeks, I thought, or I might have paralysis on one side of my face for ever.
Three days after the birth, we were signing our discharge papers and gathering our things while William was lying in his bassinet. Suddenly, the nurse who was discharging us noticed that William’s lips were turning blue; he was choking on his own spit-up. The nurse shouted; several other nurses came; and before I could understand what was happening, they were rushing William out of the door.
“Where are they taking him?”
“To the NICU,” said a nurse, running out the door, shouting the shorthand for the neonatal intensive care unit.
The doctors put William in a little plastic box and monitored his breathing. And then came the news that the doctors wanted to leave Hope in the nursery overnight under a lamp because her face was yellow with jaundice. I didn’t want to leave her there alone. I asked if I could stay in hospital with the babies; after all, my face just fell down, and my babies were still there. The doctors said our insurance would not cover an extra night.
At home, Anna had made welcome signs. She had stamped small letters on a piece of paper: H-O-P-E and W-I-L-L-I-A-M, then carefully watercoloured them. I worried that Anna would hate the twins for turning her mother into a gorgon, that she wouldn’t recognise me when I came home. How would I explain that I left the house a smiling pregnant mother and came home with no babies and no smile? As it turned out, Anna didn’t notice the Bell’s palsy until later. And when she did notice, she was characteristically sweet. “Your smile is like this, Mama,” she would say, imitating a crooked smile. Or, “Good job, Mom, your mouth moved a little bit.”
Everyone gave us the advice to sleep a lot while the babies were in the NICU, as though you can store up sleep. But the day after our first night home, the phone rang early in the morning. Hope had a breathing episode in the night, and she had been rushed to intensive care.
And so we sped to the NICU in the ice and cold. Once there, I saw William in his little plastic box, breathing. “Where’s my daughter?” I asked.
“You mean Baby B?” the nurse replied.
“She’s sicker than your boy, so she’s over there.”
“Sicker than? What does that mean?” I asked.
“I don’t know,” she said. “You’ll have to ask the doctor.” Hope was in a little plastic box, attached to monitors. I wanted to take her out, hold her, and feed her. There was a bottle of formula on top of Hope’s plastic box, even though I was breastfeeding. I asked if I could move her closer to William so I could feed them both. The nurse said, “No. We don’t have enough chairs.” I spent some time feeling angry at the nurses for not having chairs. And for feeding my babies formula without asking.
I wasn’t yet used to my frozen face, and I realised I didn’t know how to be ingratiating with strangers without smiling. How does one do that, especially if one is from the midwest, where a smile is almost a prerequisite for citizenhood? Nice, big, broad untroubled smiles that you have to undo when you move to New York City.
I once read that Americans smile more because we are a heterogeneous country of immigrants, that we don’t always speak each other’s language, so we smile to signal friendliness to those who are beyond kin. In many non-heterogeneous countries, smiling signals social hierarchy, and it can be taboo to smile at strangers. In any case, I tried to make friends without smiling in the NICU. I met another mother who had twins the day I did; she’d had a C-section; her husband wheeled her in a wheelchair to visit her babies.
It was so cold outside that February. My frozen face matched the weather and my mood. I took a taxi from our home to the hospital twice a day to visit the babies. I fed them, I held them. And after a week, my husband and I took them home.
In fairytale logic, you must trade something for what you desire. By this logic, I traded my face for my children. And it was a fair trade. At night, I breastfed one baby to sleep until the other one woke up screaming. Then I breastfed the newly awake baby until the first one woke up screaming. I did this all night long, in a kind of delirium.
I had a headache from the Bell’s palsy that felt something like a needle had entered my cranium; and loud noises, such as children crying, were magnified tenfold. (The seventh cranial nerve also controls a small protective muscle in the middle ear, which normally dampens intense vibrations on the eardrum. Without that muscle, the result is “hyperacusis”, or sensitivity to loud sound.) In other words, when the children mewled, it sounded as if they were howling. When they howled, it sounded like a heavy metal concert in my brain. At night, when I managed to sleep, I wore an eye patch because I couldn’t close my left eye, and the doctor didn’t want me to accidentally scratch my cornea.
When I did have a moment to sneak out of the house, I went to acupuncture, for the Bell’s palsy. The acupuncturist put needles in my face and attached an electronic stimulation machine to the needles. Sometimes the needles gave me bruises, and then I looked like I was battered in addition to looking lopsided.
The acupuncturist told me she cured her father of Bell’s palsy in only three days of treatment. This did not happen for me. But within three weeks of treatment, I could close my eye manually and it stayed shut while I slept. I still could not blink during the day, but I was grateful that I could forgo wearing a pirate patch at night.
Then, out of the blue, good news from the planet of theatre, which felt like a distant planet at this point. My play, In the Next Room (Or the Vibrator Play), was nominated for a Tony award for best play. This news seemed to reach me at a distance, as though I were now swimming in a different, faraway pool. The Tony awards Vanity Fair photoshoot was the next day. I debated whether or not to go. It will be awful, I thought. They will ask me to smile. But my agent said I should go, so I went.
I was asked to stand on something resembling a red carpet with maybe 30 photographers from different outlets in front of me. I recalled that the poet Elizabeth Bishop said, “Photographers, insurance salesmen, and funeral directors are the worst forms of life.” I stood in front of the phalanx of strangers with cameras.
“Smile!” they shouted. I tried hard to smile.
“Smile!” they yelled again, peering from behind their cameras. “What’s wrong with you – can’t you smile for your Tony?”
“Actually, I can’t,” I said. “My face is paralysed.”
They stared at me, mumbling apologies, and took my picture. I felt sorry, as if I was playing a mean joke on them, the one where a kid tells another kid in the playground to ask yet another kid how fast their mother can run, and that child has been prepared to respond: “My mother has no legs.”
But I hated the black-and-white photograph that was taken that day by Vanity Fair. I thought my face looked like water that was going downhill and then stopped, in some kind of deep freeze. I looked existentially pained, although it was taken on what should have been a joyful day. If I had no attachment to my face, I might have thought that the effect was sort of interesting. But apparently I did have an attachment to my face, so I thought the effect terrible. The photograph felt somehow taken against my will, just as I felt my smile was taken against my will.
I decided not to be in any more photographs.
My frozen face situation was not the first time men have shouted at me to smile. It was a regular occurrence when I was in my 20s, walking down the street, lost in thought, making up a poem in my head, brow furrowed. A man would say, “What’s wrong, baby? Smile!” Or, “Why so worried? Smile!” And I would often just oblige him reflexively, and smile, instead of saying, “I’m thinking, asshole. This is what my face looks like when I think.”
I realised that a man’s injunction for a woman to smile as she walks down the street is not an injunction for that woman to experience joy, but for the woman to notice the man walking towards her. The man feels left out of her interior experience and he feels entitled to tell her what to feel, to describe how she should show her feelings. It is almost impossible for me to imagine walking down the street and telling a man who is a stranger to smile: “Why the worried face? Smile.”
I think of Joe Scarborough admonishing Hillary Clinton after a big primary win: “Smile. You just had a big night.” And it must be said that compulsory smiling for women is enforced not only by men but also by other women. Neither is it lost on me that women of colour have an even more historically complicated and deep burden when it comes to compulsory smiling. The great gymnast Simone Biles, told by a white judge to smile more during a competition, said, “Smiling doesn’t win you gold medals.”
Three months after the twins were born, I had my first opening of a play with my new face. The play, a three-and-a-half-hour-long epic called Passion Play, was performed at an old church in Brooklyn. I loved the performance, but my face did not show signs of pleasure. My mother sat next to me, on my left, and kept peeking over at me, worried. Finally, she whispered, “Are you not pleased?”
“I’m very pleased,” I whispered back. “I just can’t move my face.” My own mother could not read my expression when sitting on my frozen side.
Without my smile, I began to develop odd ways of signalling approval or friendliness. I vocalised more. I made weird gestures with my hands upon seeing people I liked, unable to smile naturally upon recognition. Laughing without smiling was a predicament. I could make a chuckling sound, but found it difficult to feel the spontaneous sensation of belly laughing without being able to fully open my mouth.
When I met new people, I internally debated: do I explain that I’m recovering from facial paralysis so may seem unfriendly or disinterested? Or do I just make slightly forced gestures with my hands to communicate interest and excitement because I can’t raise my eyebrows? If a person had a smile that was incredibly beautiful and frequently aimed at me, it was a kind of social torture. I tried to return the smile, but through some tragedy of symmetry, a half-smile can look, in fact, like a grimace. Better not to make any expression at all, I thought. Better to say “mm … hmm” more and keep my face impassive.
At Hope and William’s first birthday, I felt immense gratitude for their health. And rage that my face remained crooked. I should have been much better, or completely healed, a year after diagnosis. I was not better. Most people (85%) have Bell’s palsy for only three months or so; 95% of people are better after a year. I knew that, since I was not better, luck was not on my side for a full recovery. I was in the land of the rare, the unusual, the outlier, the slow boat, the 5%.
I decided I should probably see that neurologist whom I didn’t like again. Once I was in his office, he regarded me and said, “Show me what you’ve got.” I looked at him, confused.
“Smile,” he said. I tried to smile. Nothing happened on my left side. “Lift your eyebrows.” Nothing happened. He looked at me appraisingly for all of 30 seconds. I assumed that he’d at least comment on my limited but incredible progress – I could blink now, after all! A huge achievement! And I didn’t drool when I ate any more. I could even shift food from side to side in my mouth, I told him proudly.
“Are you aware that you have a tic?” he asked.
“No,” I said, not pleased.
“You’re twitching right now,” he said. “I think you should see a neurosurgeon.”
“They have surgery for this?” I asked.
“Yes,” he answered. “It’s in the experimental phase.”
“You mean, plastic surgery?” I asked.
“No, this is neurosurgery, baby,” he said, rubbing his small hands together. I couldn’t quite believe that he was so excited about neurosurgery that he actually called me baby.
“I’m not sure I want neurosurgery,” I said. “I need my brain. To write. And for other stuff, too.” I explained that I hadn’t had much rest this year, that maybe I could start to sleep soon, now that I’d weaned the babies, and the rest might help me recover. He said rest wouldn’t matter much, not at this point. He told me that essentially nothing I did would help my chances at recovery: not acupuncture, not physical therapy, not rest. My nerves had grown back wrong, he said, like wires that had got crisscrossed. I asked him if surgery could uncross the wires. “Not exactly,” he said, “but it’s your only option.” I did not want to cry in front of this man.
Months passed. I did not have the neurosurgery.
My twins are now 11 and they are working frantically together on a contraption that will keep an egg safe if you drop it from a high window. Anna is 15 and can wear my old dresses. I am busy at work on an opera. I still hate being photographed, and Hope recently looked at pictures of me at my wedding and said matter-of-factly, “You were so much prettier then.”
On the other hand, my Alexander technique teacher, on a recent Zoom call, suddenly couldn’t tell, at rest, which side of my face had the palsy. And at my last Zoom physical therapy meeting, my therapist told me to go out and buy a bottle of wine – she gave me an 82% score on muscle movement. That is progress.
The partial recovery is not terribly dramatic. It is the stuff of life, not art. But the partial recovery is, I believe, very much like life. Most people have partially recovered from something. A childhood burn, a childhood trauma, a broken bone, a broken heart … How rare is it for someone to hear proclaimed about their heart or their body: “You have made a full recovery.” Who, after all, is fully recovered from life? Our bodies are resilient but always in the process of dying, even as they sometimes have the grace to regenerate.
I no longer fear that strangers cannot interpret my affect. I can laugh without extreme self-consciousness. I have relearned how to smile for pictures. And that phrase haunts me for what it is: “Smile for the camera.” Not smile for yourself, not smile for your own joy – but smile for an inanimate object. I can do it if I have to. But it is no more the measure of my joy than a tablespoon could be the measure of my heart.