I was traveling to Atlanta with two guys I was writing about, and as we grabbed breakfast before the second leg of our drive, my weird-face feeling intensified. Then my right eye began to ache, and a sudden fear iced my spine.
I stepped outside the restaurant to stare at my reflection in the car window, and I couldn’t process what I was seeing. I couldn’t move the right side of my face, and my eye ached because I couldn’t close it. The parking lot started to swim, and I willed myself not to faint.
“Something’s wrong with my face,” I told the guys haltingly. “I have to go to the emergency room when we get to Atlanta.” But they insisted on taking me immediately in Greensboro. I’m glad they did.
“My face is paralyzed, and I can’t blink. I think I’m having a stroke,” I told the receptionist at the Moses Cone Urgent Care Center, though it all felt so surreal. I’m only 44, and I’m healthy!
“You are either having a stroke or you have Bell’s palsy,” the receptionist said as an EMT ushered me to the back. Turns out I had Bell’s palsy.
Bell’s palsy, which affects perhaps 40,000 Americans a year, is characterized by acute inflammation or trauma to the seventh cranial nerve, disabling the muscles of one side of the face. This can cause anything from slight weakness in those muscles to total paralysis sometimes resulting in a face that looks melted. The inability to smile and blink are classic symptoms.
The cause of Bell’s palsy is unknown, but theories include a herpes virus, bacterial infections and facial misalignments that increase pressure on the nerves. And it’s more common in diabetics and women in the third trimester of pregnancy.
Eight-five percent of those with Bell’s palsy have complete or near complete recoveries, often without treatment. But 15 percent are left with permanent damage ranging from mild to severe. And for up to three months, the time it typically takes nerves to begin to regenerate, no one can tell you which group you’ll belong to.
The urgent-care doctor immediately put me on a 10-day course of high-dose steroids to bring down the nerve swelling. She also patched my unblinking right eye, which, left uncovered, could get scratched or sustain permanent damage. I couldn’t pucker or fully chew, and even my eyelashes pointed downward toward my cheek (I reminded myself of the “Sesame Street” character Mr. Snuffleupagus), but my face wasn’t visibly drooped. Still, the eye patch, which I had to wear continuously, was dramatic. My eye ached constantly, and I kept it filled it with lubricant and taped it shut every night.
The novelty wears off
For a few days, novelty carried me. My POV had changed dramatically. People reacted to the patch with curiosity or sympathy. Friends, colleagues and cab drivers all wanted to share stories of people they’d known — the young teacher, the guy who was about to get married — whose faces had suddenly fallen. And though little kids stared, I didn’t mind. In a strange way, it was a relief not to worry about my looks. I could still manage presentable or pulled together, but the eye patch relieved me of any duty to try to be pretty or sexy.
But as days became weeks, I started each morning with a cry. Bell’s palsy had come on dramatically, overnight, and I thought maybe it would be gone overnight as well. Then I’d try to smile and realize I had at least one more day of paralysis. I compared myself with the “before” Lonnae and wondered if she was ever coming back. I wondered if maybe I would be one of the 15 percent whose faces would never fully come back. Usually after a few minutes, I’d dry my tears and spend a little time in the mirror practicing my new, enigmatic Mona Lisa half-smile. (Informed speculation has it that Mona Lisa may have had Bell’s palsy, though once you have it, you suspect it in everyone with a funny smile.)
“Ninety percent of our patients come in, and their biggest complaint is they can’t smile,” says Jodi Barth, regional director at the National Rehabilitation Hospital clinic in Rockville and a physical therapist for 30 years who has worked with Bell’s palsy patients for more than a decade. “It’s devastating.” She and her colleague Gincy Stezar each see 11 patients a day, and 80 percent of them have Bell’s palsy. Our faces are agents of personality and communication, and some patients, says Barth, have come in so self-conscious that they’ve worn scarves around their faces or wanted to be seen in private rooms.
Though the precise cause is unknown, Barth says a majority of her patients report experiencing “massive stress” before their Bell’s palsy onset. Her theory: Stressed people clench and overuse muscles around the jaw joint, increasing pressure in the area. I had been dealing with difficult personal and professional issues and had been awakening with my jaws aching, and for me, that explanation felt exactly right.
Cheers all around
I’d seen an urgent-care doctor, my primary-care physician (who ruled out Lyme disease) and a neurologist, and they’d all said the same thing: My case was mild, and I’d probably improve in four to six weeks, which made me feel better. But it was in the NRH waiting room, with other patients just like me, that I felt most hopeful. Family and friends had been great, but none of them could fully understand how alone and afraid I felt. Barth saw me for the first time and said, “You’re doing beautifully,” and I was nearly overcome with emotion.
Inside NRH’s large therapy room I saw a woman blow out a candle for the first time in eight years, and a 15-year-old, who’d come down with Bell’s palsy when she was 12, show off the whistle she’d just gotten back six months ago. And everyone cheered. We cheered over the reappearance of wrinkles and dimples, and every small lift of a brow.
To reeducate damaged facial nerves, rehab experts such as Barth use a variety of treatments, including biofeedback, massage and a device they call the “mirror book,” which allows patients to practice making faces — my favorite was the snarl — using the functional half of their faces as a guide. They sometimes refer patients to physicians who use botox to help with asymmetry and to reduce involuntary muscle movements (such as blinking when you eat) that can develop on the palsy side of the face.
Barth says her team has seen marked recovery even in patients who have had the condition for 15 or 20 years. But the biggest initial factor in recovery is steroids, she says. A recent study has backed that up.
“If you wake up with this weakness anywhere in your face, get to the doctor or ER,” Barth says. “Getting those steroids in [within] the 24-48 hours is crucial because the steroids are anti-inflammatory, and the nerve is inflamed.” Recurrence of Bell’s palsy happens in only about 5 to 9 percent of cases, according to the Bell’s Palsy Information Site. My neurologist, Brian H. Avin, likened it to lightning striking twice.
Laura Croen, a cantor at the Temple Sinai synagogue in Northwest Washington, was eating breakfast with her son 31
2 years ago when she noticed “my mouth wasn’t working right,” and her son told her she didn’t look so good. “That night I couldn’t close my eye, and my face was totally drooped.” She began seeing Barth and Stezar six weeks later.
She didn’t know if she could continue standing up in front of the congregation and chanting prayers. “I was really depressed,” she says. “I felt grotesque.” Today, her face shows some asymmetry, but it’s nothing like it was. “I’m still making incremental changes,” Croen says. And she notes that her singing coach says the combinations of therapy have actually made her voice better.
From the beginning, I kept a Bell’s palsy diary and noted every oddity and uptick in my condition. On Day 5, I couldn’t twitch my nose. On Day 11, I could do a series of lagging half-blinks (it is very odd to watch your eyes move as if they’re set on different timers). By Day 18, I could squeeze several teeth into my half smile, and the ends of eyelashes were starting to curl up. Finally, nearly four weeks into my Bell’s palsy, my blink had largely returned, and I got rid of my eye patch. My smile was bigger, and I decided that if nothing else came back I’d be just fine. That anyone studying my face closely enough to notice something was a little off probably loved me anyway.
In the following days, my face twitched constantly and my bad eye started to blink in unison with my good one. My smile began to feature all teeth, and I flashed it often. When I saw Barth and Stezar two weeks later, I was nearly my old self again. It was exactly as my doctors and the medical literature had predicted. I was a typical case with a fairly typical recovery.
It has been almost three months since that road trip to Atlanta, and I am lucky. Not simply because I’ve experienced a nearly full recovery (my smile still seems a bit crooked), but because I was able to educate myself, talk to specialists and find a community of people who understood. If massive stress had brought on my Bell’s palsy, surely those human connections had helped mend it.
Meanwhile, my takeaway points remain simple but profound: Pay attention to your body, seek help immediately if something seems off or “tingly,” and recognize that if you’re overly stressed, you have to find better ways of doing things, because sometimes a wake-up call can show up on your face.