“Facing It” by Sally Crossley
“Facing It,” a vivid, wise, and moving account of living with Bell’s palsy, was the inaugural nonfiction winner in our annual Perkoff Prize competition for writing about health and medicine. The essay was a first publication for author Sally Crossley and appeared in print in TMR 44:4.
by Sally Crossley
There will be time To prepare a face to meet the faces that you meet;
—T. S. Eliot “The Love Song of J. Alfred Prufrock”
I’m six, seated at the old pine table in the kitchen, but instead of finishing my cereal I’m transfixed, mesmerized by the face caught in the gleaming metal of the two-slice toaster. Morning light streams through the windows on either side, hitting the curve of the toaster’s edges so my cheeks look fat, blurry, but there in the middle, that’s me; it’s true. I smile. Wrinkle my nose. Blink. Scrunch up my nose, my mouth, to make faces—happy, hopeful, sad—all of which annoy my younger sister.
“Mom, she’s looking at herself again,” she calls, so I stop, but then, after a few minutes, when I think no one is watching, I’m back at it.
Then seventeen, eighteen, gazing into the small makeup mirror on my vanity. Pretty? Plain? Ugly? Trace a dark outline along the arc where the eyelashes meet the lids. Rub in eye shadow. Twirl on mascara. Brush a bit of blush along the cheekbones. Smear gloss over the lips. Blot. Blink. Study the reflection again. My eyes too close together, though I’ve had a compliment or two about how, at the outer edges, they lift like a cat’s. But my teeth are too big, my nose really too small.
Catch a glimpse in a department-store mirror. In a window. In a rearview mirror. There I am. That’s me. That’s what I look like.
Until it’s not.
It’s October 1986, a few days before Halloween, at the end of a week when I’ve been busy sewing a clown costume for my four-year-old son. Half blue-and-white stripes, the other half white with blue polka dots, the costume is nearly finished. No mean feat for someone who, ever since home ec, has struggled with each sewing project she has begun, something the machine seemed to feel as I inched the material along the metal plate toward the needle, the thread catching, then snarling around the silver clip covering the bobbin instead of neatly locking each stitch. Yesterday, though, I managed to sew all the pieces together; just the elastic around the cuffs to go. That’s why today, my seven-month-old daughter asleep beside me, merits a few more minutes in bed.
Since my husband and I moved back to Binghamton—my hometown, a place where my husband found a better job and where I could go to grad school—I earned my MA and had our son, then our daughter, but right now I’m unemployed. All week I’ve been fighting a bad cold with a fever, my mouth full of canker sores. I’m trying to will myself back into a dream, just for a few more minutes, when my husband asks, “What’s wrong with your face?”
I open my eyes. He’s standing next to the bed, knotting his tie, studying me.
“What do you mean?”
“Go look at it,” he says.
I desperately want to stay where I am, but he looks worried, so I climb out of bed, imagining a pimple of enormous proportions. Instead, looking in the bathroom mirror, I see the problem: the right side of my mouth, along with my right eye and right cheek, droops, and no matter what expression I attempt, I can’t seem to fix it. I touch my cheeks, my mouth, my nose, all of which are sensitive—I’m pretty sure I have a sinus infection—but otherwise, everything feels normal.
I slide back in next to the baby and close my eyes. With just a little more sleep, I promise myself, I’ll be fine.
At the same time, I send part of my brain in search of an explanation. What would cause my face to droop like this? Have I ever had anything like this happen before?
Unable to sleep—it’s time I was up anyway—I look in the mirror again. The right side of my face still sags.
Usually, the only doctor I visit is for my kids, but I decide the lingering cold and fever justify a call. The fever is down, yes, I tell the nurse, but I’m also having trouble—I laugh a little, embarrassed; it sounds so ridiculous—with my face.
The doctor can see me at two.
Because I don’t want anyone else to see my face, my husband arranges to take a late lunch so he can watch the kids. The minute he walks in the door, I leave. The sooner I reach the doctor’s office, I figure, the sooner he’ll be able to fix this cold, this infection. This face. Usually, I walk; this afternoon, I drive.
He’s old-school, this doctor, his office in the basement of his house. The dark-paneled, half-filled waiting room holds half-a-dozen straight-backed chairs, and I choose one across from an older woman, keeping my hand on the right side of my face to hide it, pushing my cheek up.
But she comments anyway. “Someone’s just been to the dentist,” she smiles.
In the examining room, the doctor runs through the usual: blood pressure, heartbeat, temperature, which is a little over 100. Finally, he studies my face, then presses the skin around the right side of my mouth, my nose, my eye. “Does anything hurt?”
I tell him about the tenderness, about how my mouth is filled with canker sores.
He nods, puts away his stethoscope, then peers inside my mouth and gently feels around inside. “Does this hurt?”
I nod. “A little.”
Afterward, we sit across from each other at his desk while he makes a few notes in my file. Then he looks up and leans back in his chair. “You have a fairly severe case of Bell’s palsy,” he announces before explaining how sometimes the nerve on one side of the face dies, and doctors don’t completely understand why. “You should tape your eye shut at night to protect the eye.”
I’m trying to pay attention, but I’m waiting for the part where he tells me how’s he’s going to fix it.
He closes the file. “It could get better,” he says. “It could not.” He shrugs. “There’s not much to be done but wait and see.”
Even now, thirty-some years later, no one knows what, exactly, causes Bell’s palsy. Today, when I look it up, I see that it’s a virus, like a cold; in fact, it’s often triggered by a cold. Named after Sir Charles Bell, a Scottish surgeon who studied it in the nineteenth century, Bell’s is the same virus that causes cold sores and is related to the one that causes chicken pox, attacking what is known as the seventh cranial nerve, or the facial nerve. Once the nerve becomes swollen or compressed, one side of the face droops, making the afflicted person look like she’s had a stroke. Usually, Bell’s comes on suddenly, first becoming evident when the person tries to eat or drink. Or in the morning, when she first wakes up.
I didn’t learn any of this right away. Didn’t, in fact, research Bell’s at all. Maybe that’s because I contracted it in the 1980s, pre-Internet. And maybe, too, it’s because I was terrified of what I might find out. Instead, I clung to what my doctor had said: “It might get better. Wait and see.” Never mind that he’d also said, “It might not”; I held on to the first part of his sentence, determined to believe my face would someday return to the way it had been. But that could only work, I intuited, if no one talked about it.
Over the next few weeks, though, friends and relatives began sharing stories about people they knew who’d had Bell’s. The woman who lived in the apartment downstairs said her mother had had a bout, triggered by a draft of cold air coming in through a car window. My husband’s boss, my dentist’s brother-in-law, my aunt’s friend. But in every case, after a few weeks or months, the palsy disappeared.
That didn’t seem to be happening with me. One friend, very concerned, urged me to have an MRI, fearing a brain tumor, something I didn’t follow through with because, well, it seemed obvious. If I had a brain tumor, I would know. If other symptoms arose, maybe. But until then? I’d wait.
And I’d try not to see.
The right side of my mouth still sagged, along with my cheek; my right eye still drooped. When I smiled, I looked like those Greek masks of tragedy and comedy smooshed together: grotesque, at least in my eyes. As the days passed, I learned not to glance in a car window to catch my reflection, not to check my face in the mirror above the bathroom sink for any remaining dabs of toothpaste, not to grab a quick look in the mirror next to the door before I headed out. None of that.
By December, I was managing pretty well, I thought, avoiding mirrors, not dwelling on the fact that I had Bell’s. But then at Christmas, my brother-in-law asked if, after saying his traditional grace, we could pray for my face.
That winter, we bought our first house, a beautiful old stucco in need of repair, and as spring came on, our efforts expanded to the garden, where we dragged out broken limbs, took down trees, raked up years’ worth of decaying leaves. Between that and caring for the baby and the four-year-old, I had plenty of distractions. As for my face? I was all right as long as I didn’t look in the mirror. Who would see me anyway? My family. A couple of friends. Other moms at the park or at the preschool where I took my son. And I was gradually learning that if I jumped into a conversation, I could redirect it with a comment or question, and skip past any looks of concern about the disfigured part of my face. All I had to do was mention one of their kids.
Then one day, prompted by my mother, I made an appointment with a physical therapist who demonstrated a series of exercises that, he said, might strengthen the muscles in my face. I left with a couple of papers illustrating them, but I’d seen from his expression that he had some doubts. Going into his office, I’d steeled myself against hope. But on my way home, I decided I’d prove him wrong. I would learn to raise my eyebrow, to lift my right upper lip, to wrinkle my nose. Soon, I would make both sides of my face work together again and be able to smile.
I didn’t tell anyone about my plan, of course, in case it failed, so when a friend, visiting with her daughter for a playdate with my son, asked, “Have you thought about consulting another doctor?” the question threw me.
“Maybe,” I finally responded, reddening. “I need to think about it.”
A few weeks later, my sister asked the same question.
Both times my answer was the same, but I was furious. As with my brother-in-law’s request for a prayer at Christmas, randomly inserted into a conversation when we were talking about other things, the palsy was nothing I’d been thinking about, nothing I wanted to think about. Why bring it up?
Not that I said anything. I never said anything.
Later that spring, I went to a poetry reading at the university, and as I was leaving, I ran into a few former classmates and professors. Though it had been years since I’d been seen any of them and we’d never been close—I’d been a part-time student, married with kids, taking longer than most to earn my degree—they greeted me with warm smiles and bear hugs, anxious, it seemed, to talk to me, which was gratifying, but I couldn’t figure out why. Had we all been more connected than I’d realized?
Driving home, I replayed what had happened: the hugs, the kind words, the smiles, but those had been accompanied by, I suddenly remembered, looks of compassion, which was when it clicked: my face. They’d been offering sympathy for my face.
A prayer, a question, a sympathetic smile. Hardly reprehensible.
But I’d forgotten that while I’d adopted a plan that prevented me from seeing my face, I couldn’t change what other people saw. My friend, my sister, my brother-in-law, whomever I was in conversation with saw one half of my face move while the other half remained slack, inert. I couldn’t alter that. And yet I continued to try.
Looking back, I realize I was behaving like a very young child who, when first learning how to play hide-and-seek, puts her hands in front of her eyes and imagines no one can see her. She is hiding. And even though I had an increasing amount of evidence that my particular method was not working, I also sensed that what I was doing was the only way I, a thirty-one-year-old woman who’d simply had a bad cold, would be able to adjust to my radically altered appearance. That my face might not ever look the way it once had: What did that mean for other people? And what did it mean for me? I didn’t want to think about that.
In the many arguments I had with myself, my reasons for not seeking a second opinion varied. The doctor was a friend of my father’s; that might offend him. More, seeking a second opinion would cost additional money, which was hard to justify since I wasn’t earning any. My kids had wants and needs; they took precedence. Maybe I could no longer whistle and could only produce a lopsided smile, an ineffectual kiss, but, I told myself, I wasn’t in any pain.
What I did instead was equally instinctive. Since I hadn’t reconnected with friends I’d had when I’d lived in Binghamton before, I didn’t bother to now. Why would I want any of them to see my face disfigured like this? So, in addition to the couple of friends I’d made since moving back, I sought out other moms of kids my children’s ages who didn’t know how I’d looked before.
Now, when I reread entries from the journals I kept during those early years of having Bell’s, I find almost no mention of it.
As illnesses go, Bell’s is unusual because usually, little pain is involved. Lupus, MS, polio, now there’s pain for you. But Bell’s? For me, the only pain that occurred was when I encountered strangers and instead of smiling in response—because I still smiled automatically—they looked away. And when I looked in the mirror. Having a severe case of Bell’s is different from going gray or gaining or losing a hundred pounds or having a terrible case of acne, all of which affect how someone sees herself. Those differences come on gradually, and the image reflected in the mirror confirms that this is you.
Having Bell’s is more like being in an unexpected accident: no maiming, of course, but one’s appearance—one’s sense of self—has suddenly changed.
That’s why it’s perplexing for both the person who has Bell’s and for anyone who interacts with her. When I smile, the downward droop of my mouth suggests that I’m unhappy, even angry, because that’s how one half of my face looks. But then there’s the other half. Which is it? Happy? Sad? It’s difficult for someone looking at me to say. It’s instinctive, and far easier, for them to look away.
We marginalized people all know that it’s a fight to see ourselves clearly, to refuse to allow the way others see us to affect us too much and let that become how we see ourselves. For the unattractive or disfigured, there are the adages Beauty is in the eye of the beholder or Beauty is only skin deep or It’s what’s on the inside that counts.
Me? I secretly bought into the story of the ugly duckling. He, after all, is transformed. He turns into a swan.
“Have you thought about a chiropractor?” my grandmother, a former nurse, asked. “I read an article in Reader’s Digest about one who helped a woman with Bell’s palsy. She was completely cured!” It was three years later, and I was still continuing on just as before, but instead of taking offense, perhaps because the suggestion came from her, I latched on to the idea. Alternative medicine was nothing I’d considered, but it had a certain appeal. A miracle cure. Maybe. After flipping through the yellow pages and making a few calls, I found a chiropractor who said he’d worked with Bell’s patients before. Week after week for more than a year, he tried various approaches, but the heart of what he said was this: the paralysis was largely an issue of mind over matter. “Stay centered,” he said. “Seek balance.”
After I gave up on the chiropractor, I went back to convincing myself that as long as my face was at rest, the palsy was no longer noticeable. This bit of denial continued to work for me most of the time, but there was the occasional glitch. At the grocery store, one of the clerks, a friendly guy about my age who walked with a limp, never failed to ask, as I was checking out, “How are you?” His sympathy was palpable, but I chalked it up to what he remembered about the way I’d looked before. I was better now. “Good, good,” I responded, smiling, showing him. “And you?”
On another day, when I was pushing my cart down the baking aisle, there he was again, this time stocking the shelves with boxes of Jell-O. “How’s your eye?” he asked, touching his own.
“Fine,” I responded, and kept going. That was annoying, I thought. What was his problem? The drooping smile, that was the issue, not my eye. At home, I looked in the mirror just to be sure, facing myself head-on. Staring back at me, both eyes looked just the same, as far as I could see. There was nothing wrong with my eye.
Then one spring day, a salesclerk in a dress shop pulled me aside and in a low voice said, “I had it, too.”
I’d been looking through a rack of blouses and had no idea what she was talking about until I saw her face: one side drooped considerably lower than the other. Hers was much worse, I decided, than mine.
“Have you tried electrical stimulation?” she asked.
I nodded. I’d just finished a round, in fact, and had been convinced that finally—finally—my face looked better. I’d even asked a friend, and she’d said yes, she noticed a difference. But maybe I’d believed her because of the pain involved, the physical therapist turning up the dial in session after session, telling me to let her know when it began to hurt, something I put off doing until it became unbearable. No pain, no gain.
“Me, too,” the salesclerk said. “And then right after that, I got it on the other side.”
“I didn’t know that could happen!”
She nodded emphatically. “It happened to me.”
I nodded and quickly left, but the fact remained: she’d had the palsy. Had my friend been lying? And me, I’d been convinced it was better. Why couldn’t I see that it wasn’t?
I remained unemployed for years. I told myself this was because the economy in Binghamton was bad, which was true, but other than filling out applications at libraries, bookstores, publishers, and the local newspaper, I didn’t try all that hard to find a job. Instead, I volunteered at my kids’ school, at the church we attended, for Literacy Volunteers. At least, I told myself, I was contributing to society, and my husband’s salary was good enough that we could get by. Since I wasn’t earning any money, I kept clothes-buying to a minimum; jeans and sneakers were good enough for me. But I kept my weight down, applied a bit of makeup, still following the would-be attractive woman’s rule book so I could have the gratification of a look from somebody. Anybody.
I continued to practice the exercises I’d been given so long ago, but here and there, and always where no one would see. Not my husband, not my kids. Not even me. The best place? When I was alone driving somewhere. At red lights, I repeatedly squeezed my eyes shut, then pursed my lips, wrinkled my nose, strained to lift my right upper lip. I went at the exercises with a vengeance, determined to raise that eyebrow, to puff out both cheeks again and again as I cruised down the highway.
What I didn’t do, though, while doing the exercises, was look in the mirror. And so my thirties disappeared. For the 5 percent or so of Bell’s palsy patients who don’t recover, synkinesis often occurs, which means the nerve regenerates, but it grows back abnormally. For someone who doesn’t have Bell’s, that nerve helps bring the smile from the lips to the eyes; for a person with Bell’s, not only do the lips not turn up, but the abnormally regenerated nerve partially closes the eye whenever the person tries to enunciate or to smile. The medical term for this is ptosis.
I didn’t know this until years after I’d contracted Bell’s. Probably doctors had mentioned it, but it didn’t sink in, I was so studiously trying to ignore it. Not until many years later, after I become a high school English teacher, did I realize there were other problems.
One day, when I was teaching a colleague’s class, a student in the front row whispered something to a friend sitting next to her, then began laughing as, behind her cupped hand, she pointed at me. My face flushed. My right eye was twitching; I could feel it, and though I rubbed the skin below the eye, the twitch persisted.
I was in my fifties by then, and I had seen more than one teacher reduced to tears by something a student had said. Ignore her, I reprimanded myself. Plowing through the embarrassment, I massaged the right side of my face—discreetly, I hoped, willing whatever was going on to stop. I had a class full of students; I was in the middle of a lesson. But as the period drew to a close, I situated myself next to the desk of the one who’d been pointing and quietly told her, “I want you to stay for a few minutes after class.”
“I can’t,” she said, just as the bell rang.
“Just for a few minutes,” I insisted. My cheeks continued to burn, and my heart was beating wildly—I had no idea what I was going to say to her—but I was determined to see this through.
The student grabbed her friend by the wrist as the rest of the class filed out, leaving the two of them alone in the room with me. This girl, no doubt, expected rage or, at the very least, a lecture, which I’d considered. But at the last minute, I decided to try another tactic. As calmly as I could manage, I asked her what she had seen. Because, I told her, I couldn’t see it. “My eye was twitching, right?” I asked. “Anything else?”
Embarrassed, she looked first at her friend, then back at me. “Your mouth,” she touched her own lips, demonstrating. “It goes down.”
I nodded and then briefly explained a little about the palsy. “It doesn’t hurt,” I said. “But I woke up one day—I’d had a cold—and the nerve had died, and there’s nothing I can do about it. I just wanted you to understand.”
She apologized and left, while I, still trying to quiet my heart, knew I’d achieved something, though I couldn’t have said what.
Then came the stuttering. For anybody, this would be a problem, but it’s particularly tough for a literature teacher. Reading aloud passages to my IB juniors from Othello or from Huckleberry Finn, I found myself tripping over words I knew perfectly well: ts and ps, ds at the ends of words, were harder to enunciate, making it impossible to whip off a passage, let alone something like Rude am I in my speech / and little blessed with the soft phrase of peace. And I couldn’t for the life of me figure out why. What had happened? In conversation, friends increasingly had begun asking me to repeat myself, but it wasn’t only articulation that was a problem. The eye had begun sporadically tearing and closing at the same time, usually when I was trying my hardest to enunciate, further complicating any attempts to read aloud, since I needed to see the words on the page. And at night, when I was sleeping? The eye refused to remain shut. When I’d first contracted the palsy, I’d had to Scotch-tape the eye closed, and here I was doing it again.
I was seeing a new doctor now, the one who had first diagnosed my case of Bell’s having since retired, and she suggested that I see a speech pathologist. This young speech pathologist tried everything I’d tried before: more electrical stimulation, more face exercises, along with giving me a list of tongue twisters to practice—Peter Piper and alliterative phrases full of bs and ms—but slowly. In fact, I was to work on speaking slowly in general. Seek balance.
But then she urged me to consider surgery, specifically with a renowned surgeon at Johns Hopkins who specialized in something called a gracilis muscle transfer, where the doctor moves a useless muscle from the thigh to the face. That would correct problems with my smile and maybe, she hoped, with my speech.
Walking out of her office I considered what she’d said. While I couldn’t ignore the palsy’s effects on my speech and vision, I was afraid to hope too much. What if she were wrong? Yet she’d done the research. I had no more excuses. It was time.
A month later, I drove to Baltimore. I was the only patient in the waiting room, and a nurse handed me a survey to complete. How had Bell’s affected my mental health, my sexuality, my relationships: Seriously? Somewhat? Not at all? I read through the questions and then returned to the first one: my mental health. Years earlier, I’d come across a blog for people with Bell’s. A woman had written that her husband had left her because he told her he couldn’t stand to look at her anymore. That would be seriously. On the other hand, not at all wasn’t true, not if I was being honest.
I recalled the short story I’d read shortly after I had contracted Bell’s. It was about a woman who lost her face. She looks in the mirror for her reflection, and nothing looks back. Very Kafkaesque, but the story resonated especially for me because when I looked in the mirror, a face looked back, but it wasn’t mine. A little theater of the absurd, this whole thing.
So I checked somewhat, marking that answer for all the questions, and pretended to read a magazine while surreptitiously studying the faces of the people who had since come in. Just women, none of whom seemed to be disfigured. Were their issues simply cosmetic? Dissatisfaction with a nose? The lips?
What about me? Wasn’t I being equally self-indulgent, equally vain? Had I thought I was above that? I’d been coloring my hair for years. Growing up, I had been pretty. Not beautiful, not hold-the-horses stunning. Cute. So wasn’t I, at sixty-one, simply trying to look young and attractive again? Those years were gone.
I stood up to leave but at that point reminded myself that I’d taken a sick day and driven five hours after work the previous day to spend the night in a motel. I was here, after all. Before I could change my mind again, the doctor, appeared. Within a few minutes, this charming, clearly knowledgeable guy allayed every concern. He said he knew all about Bell’s and its long-term effects with the eye and the speech, and then he suggested a couple of things: Botox, to start with, then adding a weight to my eyelid, since, he noted, the fact that my right eye didn’t always close when I blinked was drying out the cornea.
Whether because of the drive or the fact that this hospital and the doctor were of a much higher caliber than anything I’d encountered before, I followed his suggestions. I had the Botox, which made my smile more symmetrical, but I’d have to keep up with the injections if I wanted that to continue. A few months later, I had the weight put in, which helped, though it wasn’t perfect.
The following winter, I switched to another doctor, this one equally talented, but in Boston, which was an easier trip since I knew the city and had relatives I could stay with. Her office was different. Nine floors up, the reception area was spacious, with a wall of windows offering a stunning view of the Charles, filling the room with light. Around the room sat other patients from who knew how far away, all of whom suffered from various kinds of facial nerve damage. Most, when I looked at them, refused to meet my gaze. These were my people.
A little girl in red-and-black leggings, a Swedish-looking design, came in with her mother. The child looked unhappy, but maybe the appearance of unhappiness was simply because one side of her face, like mine, drooped.
Then a guy about my age walked in, stopping at the receptionist’s desk to announce, “I’m here to get my smile back.” Heavyset, wearing a brown winter coat on this unusually cool day in May, he told her he had decided to have the two-part operation. “People don’t like it when you don’t smile,” he said.
The receptionist, a pretty, engaging young woman, smiled and said, “That’s not true.”
“Yes, it is,” he said congenially. “You know when people look at you, they want you to smile.”
“Let me see you smile,” she said.
He obliged, giving her a lopsided grin.
“There you go. You can smile,” she said enthusiastically.
“Yeah, but not like before. I’m on disability, so,” he said, and looked around, “you can schedule it anytime.”
It’s no small thing, the ability to smile. People take it for granted, offering a smile to someone sharing an elevator, to a passerby on the street, to a waiter in a restaurant, but a smile, apart from being an acknowledgment of someone else’s existence, also anticipates one in return. An exchange of smiles establishes a connection, maybe even trust. When this man tried to smile, I saw it: his face became that Greek mask, comedy and tragedy smooshed together. Try to read it and you’d err on the side of tragedy. Who was going to smile back at that?
The receptionist, a sweet young woman with whom I’d had several conversations on the phone, who’d greeted me by name when I’d walked in even though she’d never seen me before, had lied. The man could not smile, and he had rightly corrected her. He knew. Probably in her eyes, the lie was perfectly justified, told in order to not hurt him or any other patients who were listening. But for me, this distortion of the truth felt like a return to all the years of denial I was trying to put behind me. Because here was the other issue I’d carried with me: trust. Since contracting Bell’s, I had struggled to trust anyone.
Near the beginning of the play Julius Caesar, Cassius tells Brutus, “And since you know you cannot see yourself / as well as by reflection, I, your glass / will modestly discover you to yourself.” Like it or not, people are our mirrors. They respond to how we look, and that can’t help but affect how we see ourselves.
Each time I ask the people who love me whether my face looks better than it did when I was first afflicted with the palsy, they say, “I don’t even notice it anymore.” Since, for years, I rarely looked in the mirror, or when I did, I was able to convince myself that my face looked better than it did, who am I to judge? I used denial to protect me. But doing so became a curse.
For centuries (the palsy has been around for centuries, some art historians even postulating that the Mona Lisa’s half-smile is a result of Bell’s), there was nothing people with this disability could do but live with its effects. Ignoring them is possible, but the fact is, with age, they will get worse—not the palsy itself but the way it affects the face.
Today, four years after my last visit to the speech pathologist, following a mini-facelift, a series of Botox injections, PT appointments, and exercises, I’m still at it. I’ve now had Bell’s for more than half my life, but if continuing with all of this seems excessive, pointless, even, consider the alternative.
Because the palsy left me unable to use one half of my face to speak and to smile, over the years, particularly when I teach, I’ve become much more animated, trying to reassure whomever I’m speaking to that despite my sardonic expression, my words and humor are kindly meant. The downward turn of my lip, which undercuts whatever I say? It’s unintentional. But that can be a hard sell.
And recently, the physical therapist told me that way of compensating was not necessarily good for me. Instead, speaking slowly, training my brain to visualize a symmetrical face, a method known as neuroplasticity, should be my goal. To cultivate a kind of double vision enabling me to see the face as it really is while envisioning that both sides look the same. To see and yet to imagine, both at once. She even suggested that I videotape myself talking so I could isolate the better expressions and practice adopting those. “The affected eye,” as the doctor refers to it, remains slightly smaller than the other, the eyebrow above it, because of the synkinesis, immobile. But if I look head-on in a mirror and don’t smile, I can convince myself that the way I look is basically normal. Photographs, though, say otherwise. They catch the face, hold it still, freezing the disfigured expression.
In a class I sometimes teach on epistemology, I include a TED talk by a neuroscientist named Beau Lotte, who begins his talk with William James’s words: “We see what we see because it is useful to see that way.” Lotte’s focus is color and shape, and in example after example, he shows how our senses prove unreliable. Even though we think we can trust our senses to give us an accurate reading of the world, Lotte shows, that’s not always the case. Because we expect what we see to resemble what we saw before, we respond accordingly, even though what is before us may have changed.
Sometimes I tell myself that if I’d sought out a second opinion or if I had been prescribed antibiotics or steroids immediately, I might not continue to struggle with the palsy’s effects, yet I know there wasn’t— and still isn’t—a “right” path to follow. Some people, even now, who are afflicted with Bell’s, no matter what medicine they’re given, will never completely recover.
The goal, then, changes. These days, it’s primarily to prevent the effects from becoming worse. I now have to add drops to the palsy-affected eye several times a day because it’s red and constantly dry; the lid still does not completely close, so I pull the eyelid down multiple times a day and hold it for one minute, two. I don’t want to have a heavier weight added. I don’t want a doctor to stitch the eyelid partially closed to protect the little vision that eye has left. At night, I still tape the eye shut.
I eat with a napkin in one hand to catch any food or drink that might slide out, which happens, particularly on days when I’m tired and my cheek is more flaccid. It isn’t pretty.
My speech remains a problem, so every day, I practice saying tongue twisters.
I keep up with the Botox, the physical therapy, the face massages and exercises at least twice a day in front of a mirror, and while looking at both the disfigured half and the half that remains unaffected, I imagine both sides reconciled, aligned. I attempt to purse my lips, which works on one side but not so much on the other and half-closes the eye, no matter how much I try to hold it still. Next, I attempt to smile with my lips closed, one half stretched toward the cheek, the other stopping short; the eye, once again, half-closes, and the chin wrinkles, though I’m trying not to let it. And so on, continuing to imagine both sides the same while making sure I see that they’re not.
Not long ago, I moved to a different area, and when I meet new people, if I catch them looking, I slip in the fact that I have Bell’s. Just a sentence or two. A way to connect, to clear the air. We can move on.
When grieving a loss, people are supposed to arrive at acceptance, and maybe, finally, now, at sixty-six, that’s where I am. After years of not allowing anyone to take my picture, I’m eager to be included. Pictures, after all, are records capturing aspects of who we are at different times in our lives. But except for the occasional photo taken at my children’s graduations, my daughter’s wedding, I’m missing. My choice. I didn’t want to see. Recently, though, I discovered that if I part my lips slightly and open my eyes wide, the camera freezes that expression into a look that is less disfigured, more acceptable. Instead of a smile, surprise.
It’s a trick, but it allows me to see, to accept the face in the picture, in the mirror, in the toaster, in the department-store window, to confront both the disfigured half and the other, the two joined together in a kind of broken symmetry: that’s me.
“In 2018, I was sitting at the same pine table I mention in the opening of this piece. It was no longer the place where my family and I ate our meals but my desk. I wrote the line, “About two years ago I decided to do something about my face.” My original title? ‘Look Away.’
“In draft after draft, I kept the title and the line, liking the directness, the faintly humorous edge, the self-mockery—as if I could do anything about it! But as I continued to reshape this essay, I realized that more than making it a therapeutic exercise for me, I hoped to reach both those who have little or no knowledge of Bell’s and those who are similarly afflicted. To do that, I needed to focus on the difficulty and the necessity of “facing it”: looking head-on at this virus that so dramatically impacted my life and its aftereffects.”
Sally Crossley earned her MA in creative writing from Binghamton University after living in that city for most of her life. She also worked in bookstores and taught English in a public high school before retiring to a small town outside Portland, Maine, to write short stories and, more recently, essays. This is her first published piece.