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Smiling inside, hoping you'll see

A Bell's palsy patient makes the most of her own brand of beauty as she teaches classmates the science behind her limited self-expression.

September 11, 2008|Denise Gellene | Times Staff Writer

As the deadline approached for her science project last spring, Culver City fifth-grader Kiana Deane chose a familiar subject: herself.

Since birth, she had been afflicted with an uncommon form of paralysis called Bell's palsy that left her unable to smile. As far back as she could remember, children would stare at the empty look on her face and ask: What's wrong with you?

She decorated her science poster with photographs of her own face, staring outward with that blank, emotionless look of fashion models whom she admired because their expressions were like her own.

Her project was also a plea for her classmates to look behind her face to the girl inside.

"I get teased, questioned and misjudged because I am unable to smile," the 11-year-old wrote. "Well, maybe I don't have the muscles or nerves to smile, but I have kindness, respect and I am going to live a successful life."

In the human face's infinite patterns of expression, a smile springs from one of the most basic motivations -- the desire to connect with others.

Next to blinking, smiling is the most common facial expression, performed almost reflexively to convey a range of feelings: pleasure, embarrassment, friendliness.

To have no smile is a rare burden. Some say it is like being trapped behind a mask.

Bell's palsy is the default diagnosis when the exact cause of facial nerve damage isn't known. In the overwhelming majority of 40,000 cases reported in the U.S. each year, the paralysis is temporary and resolves in a matter of months without treatment. Most cases involve older adults.

For those who fail to recover, the condition can be devastating. Karen Schmidt, a biological anthropologist at the University of Pittsburgh who studies emotions, has worked with teachers and lawyers who have quit their jobs because they believe they can no longer be effective without the use of their faces.

What these patients miss most is their ability to smile, Schmidt said.

Chiara Walters, 34, said people stopped smiling at her because she could not smile back, and the children in her Louisville, Ky., classroom thought she was mocking them with the pouty look her paralysis brought.

Debbie Lawlor, 54, of Fairfield, Ohio, who came down with Bell's palsy 14 years ago, said she yearned to let her grandchildren know that she was happy and not making faces at them.

For a child, the loss is immeasurable.

"A smile is, like, everything," Kiana said.


Her inability to smile showed almost immediately after birth. Her biological mother was a drug abuser, and days after she was born, Kiana was whisked into foster care. Kiana dribbled a lot when she took a bottle because she couldn't properly close her lips.

Social workers noted the paralysis on one side of her face and speculated a facial nerve was damaged when Kiana's head emerged from the birth canal.

An arched eyebrow, a friendly wink, a tearful frown all need a functioning seventh cranial nerve, one of 13 specialized nerves that emerge directly from the brain to control the muscles of facial expression.

When Kiana tried to smile, the result was a lopsided expression that looked more like a grimace. Her foster mother, Faith Talsma, would take her to Sears for baby portraits, instructing the photographer to shoot Kiana's good side and to refrain from making her smile.

At age 3, Kiana was adopted by Robin Deane, a choreographer at West Angeles Church of God in Christ, who took the toddler to physical therapy. Kiana received electric shocks and, every night, Deane massaged Kiana's face to stimulate the girl's paralyzed muscles.

She began drumming into Kiana the idea that she should see herself as a regular, pretty girl. Whenever a new issue of Cosmo Girl or Seventeen arrived, Kiana immediately looked for the pictures of emotionless models so she could cut them out for her scrapbook.

"It makes her feel normal when she sees these pictures," Deane said.

Seizing on Kiana's interest in models, Deane bought a collection of inexpensive colorful hats and sunglasses that Kiana could use when she rehearsed her poses. Once, Deane conducted a mock fashion shoot with a disposable camera, then compiled the photos into an album that Kiana calls her portfolio.

Adjusting her floppy pink hat, Kiana recently demonstrated a pose in her bathroom mirror, tilting her head just so.

"You don't need to smile to be beautiful," Kiana said.

Deane began to pick up hints of the emotions that were missing from Kiana's face. If she was slouchy or too quiet, Deane guessed something was bothering her. A grimace, the closest Kiana came to a smile, meant happiness.

For others, it was more difficult. Teacher Jeffrey Snyder said he would ask Kiana questions to draw her out because he couldn't tell by looking at her whether she understood her lessons or was perplexed by them. Classmates said they thought she was sad when she wasn't.

"I would ask her, 'Kiana, are you OK?' " said Kamaria Jordan, 9, a friend from church.

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