Twelve Truths About My Life With Bell’s Palsy

Pam Moore | Longreads | July 2017 | 16 minutes (4,065 words)

1. My face—and my life—split in half ten days after my second daughter was born.

In the grainy iPhone photos taken immediately after Lucy’s birth, I am looking at the ceiling, not at her. The gray-gold glow of dusk peeks through the blinds and I feel as if it’s four in the morning, as if I’ve been laboring all day.

In fact, I’d felt the first twinge of labor around lunchtime. I put my toddler down for a nap and was halfway through an episode of Breaking Bad when I realized this was it. I made my two-year-old a peanut butter and jelly sandwich and packed her overnight bag between contractions. At three o’clock my in-laws came for her and I waddled to the sidewalk to thank them while my husband buckled her into their car. The midwives came about an hour later, and our baby was born as the summer sun dipped behind the Rocky Mountains.

In those pictures she grows pinker with every breath and all I can think is, Holy shit. Not Holy shit, she’s gorgeous or Holy shit, I am in love with her, but Holy shit, it is finally over. As in Holy shit, that was hard.

I didn’t know the hardest part was yet to come. I had no idea the next 365 days would find me depleted, sad, and anxious. I would spend the year vacillating between dreaming of a fast forward button to catapult me through time, and berating myself for squandering my daughter’s babyhood. But that would come later.

In those pictures—some taken before my midwife advised me to wipe the rivers of black mascara from my cheeks, some after—I am sitting next to my husband in the birthing tub, my bare shoulder leaning against his, while I press Lucy to my chest. Just moments before, I’d sweated and grunted our second daughter into this world, certain she would cleave me in half. In a way, she did.

I look at those pictures with nostalgia, as if seeing a yellowed photo of a beloved dead relative—I see in those pictures the end of an era, a time when I could be in front of a camera without worrying about the tilt of my head or the angle of my face. Ten days postpartum, the right side of my face became paralyzed. I noticed it in the bathroom while putting on lip gloss. I couldn’t press my lips together. I overheard my toddler say something funny, but when the left side of my face smiled, the right side hung limp, as if it did not get the joke.

One doctor’s visit and one emergent MRI later, I was diagnosed with Bell’s Palsy, a condition characterized by weakness or total paralysis of one side of the face. My doctor said it’s caused by inflammation of the seventh cranial nerve, which could be caused by a virus.

Ten days postpartum, the right side of my face became paralyzed. I noticed it in the bathroom while putting on lip gloss.

The day after diagnosis I went to acupuncture while my mom held my newborn on a shaded bench outside the clinic. Still swollen from my pregnancy, when the acupuncturist asked when I was due, I bit back tears and the urge to punch her fresh-scrubbed, smiling face and told her I’d actually had my baby a week-and-a-half ago.

She said Bell’s Palsy is caused by “wind” which, as far as I can tell, is Eastern medicine’s version of stress, but then I’ve also heard you can get it from a breeze blowing on your face. No one knows for sure.

2. I miss my old face.

Two years later, I am about 90% recovered, but when I look at myself in old pictures—pictures from before—I think, “That’s when I was pretty.” The digital picture frame on the credenza in our living room rotates through hundreds, maybe thousands, of photos. Sometimes, when I’m sorting the bills, magazines, and sunglasses littering the credenza, an old picture of me flashes on the screen and I pause. I stare for the full four seconds, until the next image loads. That’s as close as I get to seeing the face I knew for the first 35 years of my life staring back at me in the mirror.

I took countless selfies of my elder daughter and me during her first year. Me, beaming at her. Her toothless smile shining back at me. Me squeezing her as hard you can safely squeeze a baby. There are hardly any photos of Lucy and me together during that first year, and I know it’s not just because she came second.

My dad always said I had a million-dollar smile. I know I’m his kid and he’s supposed to say stuff like that, but it’s true. I had a killer smile. The one I have now isn’t bad, but I miss the old one. It’s a shallow, stupid loss, but it’s my loss. I tell myself I’m allowed to feel as sad as I want to. But another voice heckles me—the one saying I’m an asshole, pointing out that my life is amazing, and telling me to go get a real problem.

3. I had a rough postpartum, but it was less about the baby and more about my face.

I was ugly and I was not sure when, or if, my face would heal. Once I was diagnosed with Bell’s Palsy, I obsessed over those facts. The ten days between Lucy’s birth and the onset of my Bell’s Palsy passed in a haze of exhaustion; though I do remember being relieved I’d sidestepped the hemorrhoids that had lit my anus on fire with every bowel movement following my first child’s birth. I was proud I’d pushed all of Lucy’s nine pounds and six ounces out of me without even a tear.

It had been two years since I’d had a newborn, and it turned out I’d forgotten most of what I knew about babies. Before she was born, I’d imagined strapping her into the Baby Bjorn, or pushing her in the stroller, with my toddler in tow, all of us smiling, en route to the park or the library.

I had a rough postpartum, but it was less about the baby and more about my face. I was ugly and I was not sure when, or if, my face would heal.

I had not counted on this baby’s fiery temperament. She slept only when held. She latched onto my nipple eagerly, then sputtered as if choking, while milk spurted from my breast in three distinct arches. No surface within a three-foot radius was safe from my nipples’ furious spray when Lucy was hungry. On top of the normal clutter, the house was littered with washcloths (a feeble attempt to protect the furniture from my milk). I remember being tired and frustrated.

However, my biggest problem was not my baby, or my messy house, but my face. In some corner of my brain, I had the dim awareness that she would not remain a baby forever. That inevitably, she would sleep through the night. I had no such reassurance when it came to my face. Though I’d read that 90% of people with Bell’s Palsy experience a full recovery within six months, it was unknowable whether I would be one of them.

Every minute of every day, I felt the right side of my face submitting to gravity while the left side carried on as usual. When your face is normal, it’s as if you’ve inserted a tampon correctly; you don’t notice it. Bell’s Palsy was distracting and uncomfortable, like a tampon that’s only halfway in, if that tampon also transformed your face from reasonably attractive to freaky-looking, and was welded into your vagina so as to make its removal or adjustment impossible. And according to the internet and your doctor, it would probably fall out on its own someday, but maybe wouldn’t, and which way it would go was anybody’s guess.

I cried a lot when Lucy was a newborn.

4. I was robbed of the joy I wanted to feel during my daughter’s first year because of my newly busted face.

My loss was a mark on every celebration.

She found her hands! …I don’t look as creepy as I used to. I think acupuncture is helping.

She rolled onto her tummy! …Yahoo, I took the first selfie I could look at without cringing!

She crawled! …I hate my face.

She ate a banana! …Will my face ever go back to normal? I hate my life.

5. It’s not fair to blame that shitty year solely on Bell’s Palsy.

I could have been happy if I’d wanted to be, if I’d tried harder, if I hadn’t been so fucking shallow. It was just a face, after all.

But it was my face. It used to be my pretty face and now it was lopsided, with the left side working fine, while the right side drooped, too weak to smile, to form a seal around the edge of a cup, or to even help out with chewing. My stomach was doughy, my breasts were hot and swollen with milk, I was up all night with a newborn, and I just wanted my face to look normal. I was angry. And then I would remember anger was a choice. I needed to inhale acceptance and love, exhale all that anger and negativity out.

But fuck that, because every time I smiled, I felt like a sideshow.

I spent a lot of time crying and poor me-ing, why me-ing, raising my fists skyward, asking what the hell I was supposed to have learned from this. Of course, the angry fist-raising was metaphorical. I was too busy holding the baby, burping the baby, reading to my toddler while nursing the baby, or fixing snacks, to do anything that resembled raising my fists toward a god I am not sure exists.

Daily, I reminded myself of the good things in my life: my husband loved me. My kids were healthy. I had Bell’s Palsy, not cancer, multiple sclerosis, or anything truly grave. Every meme in my social media feeds said gratitude would make me happy. But the more I focused on all the ways in which I was #soblessed, the more shame I felt for feeling sad and angry and anxious about my wrecked face.

If I weren’t so vain, I would have been kissing my baby in the folds of her fat, luscious thighs. Instead, I was crying with my face in a pillow on my bed, while my two-year-old danced stuffed animals in front of the baby’s face as they lay together on a blanket in the living room. If I weren’t so self-absorbed, I would have spent quality time with my toddler during the baby’s naps, instead of letting her play alone while I obsessively researched Bell’s Palsy.

I tell myself I’m allowed to feel as sad as I want to. But another voice heckles me, pointing out that my life is amazing, and telling me to go get a real problem.

6. Bell’s Palsy turned me into a Google search addict.

In the weeks following my diagnosis, I spent most of my time in bed, simultaneously nursing the baby and Googling Bell’s Palsy on my phone.

How do you get Bell’s Palsy?

How long does it take to recover?

Will I recover fully from Bell’s Palsy?

Does acupuncture work?

What vitamins and supplements should I take if I have Bell’s Palsy?

Will I get Bell’s Palsy again?

I Googled till I was sick of Googling, and then I Googled some more. It wasn’t healthy. It wasn’t right. I couldn’t help it. I would ban myself from using Google. And then I’d hit Google again.

I gave the search engine a rest when I discovered a Bell’s Palsy Facebook group. I could not stay out of it. It had thousands of members and a constant stream of new posts. There were questions, success stories, rants, fears laid bare, and selfies. These people were my tribe, their posts my bible. I responded with “likes,” words of encouragement and appropriate emojis.

Gradually, I extricated myself from the Facebook group’s vise grip as the red-hot urgency of my questions cooled. It turned out, time answered most of them for me: Acupuncture does help. Yes, you can relapse in times of illness or stress, and it will make you cry desperate tears and say things like “I can’t do this again,” even though of course you can, because you have no choice. No, the trajectory of your recovery after a relapse will not necessarily be the same as it was with your original diagnosis. Yes, you should stop wearing eyeliner on your lower lash line. Yes, you will get used to this. Yes, you can live a beautiful, rich life again. Sleep will help. A lot.

When she was 16 months old, Lucy started sleeping through the night on a regular basis and I was so happy I wanted to cry.

7. Almost everyone thinks my face is totally normal except me.

My mom and husband admit it’s not 100% healed but they’re the only ones who see what I see. It has been over two years since my diagnosis and my sister says she thinks my face is back to normal. This means a lot because she is very attentive to detail, and very honest. (She is the one who alerted me to my newly acquired back fat during my freshman year in college. She was twelve at the time.) I tell her I really appreciate her saying I look the same as before, but that I know it isn’t true.

I know I should stop mentioning my Bell’s Palsy to anyone who didn’t know me before. Because that’s an invitation to hunt for the asymmetries, like my face is a “What’s Wrong” page in Highlights Magazine.

“See this?” I’ll say, touching my fingertip to my cheek, tracing the line that extends at about a 45-degree angle from the nose to the edge of the lip. “That’s the nasolabial fold. Mine is more pronounced on my right than my left. See?”

I am compelled to point out my flaws when friends assure me my face is symmetrical. I know I should just say thanks and change the subject. I know a normal person would ask about the new Thai place in their neighborhood or tell them about the fabulous book they need to read.

Instead I’ll smile wide, to prove my point. “Also, my smile is still asymmetrical. See how more of the teeth on the left side of my face are exposed than on the right side?” I’m not done yet. “The thing that really annoys me, though, is my right eye gets small and squinty when I smile. So I haven’t gone back to normal.”

You’ll still say you wouldn’t have noticed if I hadn’t told you, but I can’t decide whether I believe you.

Pictures are the worst. Maybe it’s because my smile is not always genuine in a photo. Or maybe it’s that the camera freezes an image in a way the human eye can’t. The women in the Bell’s Palsy Facebook group offer simple tips and tricks on how to angle your face for pictures. That helps a lot. The women talk about how Bell’s Palsy forces you to focus on your inner beauty. But no one has told me how to do that in Three Easy Steps.

8. Maybe Bell’s Palsy is punishment for my vanity.

I have always been vain. As a kid, my greatest thrill was when my babysitter would arrive toting her cosmetic bag and her curling iron. After we’d watch Star Search together, she’d turn me into a “model.” I don’t remember ever passing a mirror or store window without at least glancing at my reflection. I would rather not consider what I could have done with the hours I’ve logged over the years studying my appearance.

If you didn’t know me, or even if you did, you’d probably be surprised by how much time I spend scrutinizing my own image. With a couple of exceptions—an awkward, braces phase in middle school and a couple of chubby years in college—I’ve generally been considered cute. I was born tiny, at just four pounds, four ounces, and by my 16th birthday I’d grown to my full height of five feet tall. As a kid, being small meant the other girls stuck me with being the baby when we played house, which I despised. As an adult, it meant I’d never be considered beautiful or striking, that I’d have to settle for cute.

Bell’s Palsy makes you keenly aware of who makes you smile. You used to chuckle at jokes that weren’t funny just to be polite. Now you don’t smile unless you have to.

With the exception of guests at my wedding, people who have told me I am beautiful fall into two groups:

1) My parents

2) Men hoping to have sex with me

After I got Bell’s Palsy, I wished to feel even a tiny bit cute, never mind beautiful. I wished the right side of my face functioned like the left. I wished it would cooperate when I smiled, when I tried to pronounce B’s and Ps, when I drank from a straw, when I laughed. I wished I had appreciated how lucky I had been when I had a fully working face. I wished I had not taken for granted how easy it used to be to simply exist in public, to be introduced to someone at a party, to order a meal at a restaurant without suppressing the urge to blurt out, “I have Bell’s Palsy. That’s why my face is jacked.” I wished I didn’t care about my appearance as much I did. I wondered if this was the universe’s way of shaking me by the shoulders and yelling, “Your face doesn’t matter. You’re still the same person.”

9. I am glad I cut my hair into a pixie when I did, when my face was normal.

I had just found out I was pregnant with our first child when I asked my hairdresser to chop most of my hair off. I was confident my husband would always love me and never leave me, even if he didn’t like my hair (which he didn’t). I loved it, though. Until I grew it out, I always wore makeup and earrings, lest I appear androgynous, or worse, masculine. I was used to people saying I was too blunt or too loud. That I could handle. But I the idea of people thinking I looked too manly was unacceptable. But this was a fact I mostly kept to myself.

When people said, “I could never pull off that haircut, but you are rocking it!” I would say, “What? No, of course you could!” In fact, I think longer hair flatters most women. You need a certain kind of face to make a pixie work. Specifically, it should be pretty and symmetrical. I was grateful my face met both criteria, but grateful in the way you always are, before you know any different. Not nearly grateful enough.

10. I used to have a vision that I’d suffer a chemical burn to my face.

Maybe it wasn’t a vision, but a premonition or an obsessive thought. It was like a daydream, an imagining floating into my mind. It was also like a nightmare; I never invited it, and it left me breathing shallow, anxious breaths.

In my imagination, my misfortune was caused by an incident with an unwieldy bottle of Drano or an accident in a meth lab. Both scenarios are hard to fathom; I defer plumbing problems requiring more than a plunger to my husband, and the closest I have come to a meth lab was binge-watching Breaking Bad. But dreams (and unbidden, haunting mental images, I suppose) rarely make obvious sense, do they? You’re in your elementary school, which looks just like your office, and your dad is actually your best friend, and it feels completely natural until you sit up and rub the sleep out of your eyes.

Once my make-believe facial accident popped into my head, I would torture myself with questions about my imaginary future. Would I leave my family to get treatment at the best burn center in the world? (Definitely, yes.) Would my husband or my parents stay in a hotel nearby and keep me company during the day? (Most likely, they would take turns.) What would my life be like afterward? (People would always stare at me, but they’d never know how much progress I’d made through painful skin graft surgeries.) Would I go out, meet new people, be in the world with any confidence? (I couldn’t imagine it.)

The women in the Bell’s Palsy Facebook group talk about how Bell’s Palsy forces you to focus on your inner beauty. But no one has told me how to do that in Three Easy Steps.

I wonder now, if my obsessive face catastrophe specter was actually a premonition that was slightly off. Maybe some part of me was prepared for the (temporary) ruin of my face. Maybe I was supposed to endure something much worse than Bell’s Palsy and I dodged a bullet. Maybe I’m still due for that chemical accident. Or maybe I’m trying to create meaning where there is none. I don’t know.

I do know this: My face cataclysm bogeyman has not paid me a visit since I got Bell’s Palsy.

11. Bell’s Palsy makes you keenly aware of who makes you smile.

You used to chuckle at jokes that weren’t funny just to be polite. Now you don’t smile unless you have to. Screw manners.

You realize that the funniest, wittiest people don’t necessarily make you laugh. It’s the people you’re closest to who do. The people who get you. They never hung around for your cuteness. To be fair, your husband probably did, at least at first.

With your sister and your husband you will break into a laugh, then hide your face, then look up, knowing how ridiculous you look, how creepy half a face laughing is. (You know this because most of your conversations with your sister are over FaceTime, which means you have no choice but to see your distorted expression reflected back on the iPad.) When they see you laugh, they laugh harder, which makes you laugh harder and you know, even if it’s just until the giggles fade and you catch your breath, that it’s not so bad.

During the first three months, when my healing was nascent and my face had no idea how to act like a face, smiling made me self-conscious. I reflexively looked down when I laughed. I forced myself to smile with my mouth closed. I avoided meeting new people. I tried not to let my toddler see me obsessively smile at myself in the mirror while I assessed the situation. Most days, I waited until I saw that she was fast asleep, her arms splayed wildly across her bed, her magenta curtains drawn, to cry.

12. Bell’s Palsy makes you want your mom.

You wish you could crawl into her lap and cry and let her hold you while you bury your face in her shoulder, inhale the familiar scent of her perfume, and pretend the rest of the world doesn’t exist, but you can’t and this sucks. And then you realize that actually, you can, you just have to ask for it. You spend $135 for your therapist to tell you this.

My mom came to visit when my daughter was ten months old. My face looked a whole lot better by then but I still hated it. I also kind of hated my life. I hadn’t slept through the night since my daughter was born. My limited free time was absorbed by appointments; physical therapy for my face, more physical therapy for my body — my pregnancy literally tore my abdominal muscles down the middle — and a therapist-therapist for my sadness, anger, anxiety, and irritability.

During my mom’s visit, I told her how upset I was about my face. Her response: “Thank goodness you started acupuncture early on. Think what it would be like if you hadn’t. Acupuncture could really help with your mood. My acupuncturist is great and he only charges $25 a session because it’s community acupuncture.”

I did not want to talk about acupuncture.

I wanted her to wrap me in her arms and say nothing. Or maybe, “I love you,” or, “I know it’s hard,” or “It’s going to be ok.”

My therapist had said to tell her I just wanted a hug. She told me to explain that I didn’t need my mom to offer a solution, I just needed to know she cared. So, one evening, in my kitchen, I told her. She said nothing and opened her arms. And I cried into her shoulder while she hugged me with just the right amount of pressure. She stayed there until I let go.

* * *

Pam Moore is a Boulder, Colorado-based freelance writer and the mother of two young girls who writes mainly about parenting, fitness, and relationships. She is a regular contributor to Parent.co. Her work has also been featured on Huffington Post, Scary Mommy, and Mamalode.

Editor: Sari Botton