With facial paralysis due to Bell’s palsy, this writer focused on her mind instead of her body

Written by Amy Ta, produced by Sarah Sweeney and Angie Perrin

“There was a sense that there was something wrong with me for not getting better, or for being an outlier in the pattern of the disease,” says Sarah Ruhl. The playwright wrote about her decade-long recovery from Bell’s palsy in “Smile: The Story of a Face.” Photo by Gregory Costanzo.

Playwright Sarah Ruhl hit a high point in her career when her play opened on Broadway in 2009. The MacArthur “Genius” fellow (2006) had a full and satisfying personal life with a loving husband and three kids at home. However, she physically couldn’t smile because she was suffering from Bell’s palsy, a mysterious and sudden paralysis of the face that usually resolves on its own after a few months. But for Sarah, it has lasted for 10 years. She writes about this in her new memoir, “Smile: The Story of a Face.”

Ruhl got Bell’s palsy when she just gave birth to healthy twins, named Hope and William, after a difficult pregnancy. When the lactation consultant checked on her the next day, she noticed Ruhl had a droopy eye and told her to look in the mirror.   

“The whole left side of my face had fallen down and was immovable. And at first I thought it [sic] had a stroke. And a neurologist came in and diagnosed Bell's palsy,” Ruhl tells Press Play.

“I couldn't say my p’s, I drooled when I ate. And I had terrible headache, and loud noises hurt my ear. So my baby's crying especially was painful because the cranial nerve muffled sound. And I think the particular neurologist I had … he said, ‘Well, we don't know if you'll get better or not. You probably will.’ So I think there was something about having an idiopathic disease, where you don't know what the outcome will be, that was alarming.”

Scientists know Bell’s palsy can be caused by a virus and Lyme disease, and it can appear more regularly among women in their third trimester postpartum than other people, Ruhl explains. It supposedly can be genetic too, as her mother and uncle both had it. However, what truly causes the condition remains unclear. 

She also has celiac disease, which partly made her Bell’s palsy last so long. “Celiac means you're not digesting your food properly, so I wasn't getting B-12 vitamins, and B-12 vitamins are what cause the nerve to regrow. … My nervous system was being starved.”

Mind vs. body  

She describes at one point: “My face was in a deep freeze. And so I decided to live inside my mind instead of my body. I think I wrote off my body as a source of disappointment. And I thought, ‘Well, I'll write plays, I'll think I'll love my family, I'll do all the activities I normally do.’ And I kind of gave up on my body.”

She says the divide grew between her mind and body. “Because I couldn't make certain expressions on my face, I just didn't try. I just tried to remain neutral and impassive. And I think for a writer, that was maybe an easier stance than for, say, an actor to retreat into an observer role. … It was not until I started writing the book that I started to put the two halves together again.”

Raising her babies and learning different communication avenues

Ruhl says that her daughter Anna was old enough to read her intentions, but she was worried that her babies registered only a lopsided grimace when she was trying to show/teach them love and joy. 

She didn’t have many photos of herself with the babies because she didn’t want to be photographed at the time, and when taking videos, she was always behind the camera. 

“I found that I was smiling with my voice at William and Hope. I was constantly, with the warmth of my voice, showing and giving love. And it's funny that I didn't realize at the time — that touch and gesture and the voice is as capable of showing warmth and affection as the faces.”

Now as the world is dealing with the coronavirus pandemic and regularly wearing face masks, they’re more communicative with their eyes and (hand) gestures, and being more direct about things they might have tried to signal through facial expressions. However, Ruhl notes that masks bring a loss: “It's harder to invite human connection without the whole face.”

Finding the best therapy

Ruhl turned to a chiropractor, acupuncture, Zen Buddhism, steroids, and all sorts of approaches to ameliorate Bell’s palsy.  

She says spiritually and physically, her path forward was about slow and small improvements — strewn with disappointments and uncertainty. She also immersed herself in daily life and “shoved the fact that I wasn't getting better — way down deep.”

“There was a sense that there was something wrong with me for not getting better, or for being an outlier in the pattern of the disease. … I listened to my doctors. And I think it took me a really long time to take control of the narrative … to be more active in the process of trying to get better and to try to find the right specialist.”

Ruhl says she felt objectified in the medical process. “It was usually a man looking at me saying, ‘How much of a smile can you give me?’ And that was literally the language they would use.”

Then she went to a physical therapist — a woman who once had Bell’s palsy. 

“She would do expressions with me. Instead of making me look in the mirror with a forced smile that I couldn't even replicate, she would have me look at her face, and she'd say ‘smile,’ and we would both smile. Or she would say ‘grimace,’ and we both grimace. And there's this concept of learn non-use with stroke victims, where if you don't use a muscle for a long time, it forgets how to move. And so I think, with physical therapy, I was able to wake some of that up. ... Physical therapy helped me a great deal.”

Life today

Ruhl says this recovery took her about 10 years, and she will never be totally “cured.” 

“If you look at me, you'll see that my smile is crooked. And when I speak, it's a little bit lopsided. But just to be able to smile, to communicate that I'm smiling, to blink, to communicate friendliness to strangers, to laugh in public, I mean, all these things that I couldn't do for a very long time, now I can do, which is incredible.”

Ruhl’s current project is “Eurydice,” for which she wrote the libretto, and it’s running now through December 16 at New York’s Metropolitan Opera. 

Credits

Guest:

  • Sarah Ruhl - playwright, author of “Smile: The Story of a Face”