Smiling on the Inside
a sketchbook about Moebius syndrome · Walter Licon · Tucson, Arizona

I'm a draftsman by trade and a cartoonist by temperament, so I've laid this page out the way I'd lay out a sketchbook: a drawing, a caption, and then whatever I have to say about it. The drawings themselves are in a spiral-bound pad on my desk at home. I'd scan them, but the scanner at the office is for drawings that get paid for. So you'll have to take my word for them. Use your imagination. That's what I've been asking people to do with my face for forty-five years.

My name is Walter Licon. I'm 45. I've been a draftsman for a civil engineering firm in Tucson for twenty-two years, drawing roads, drainage channels and subdivisions, mostly on paper, lately on a computer, which I've decided to like. On weekends I draw caricatures, at church fairs and birthday parties and for anybody who'll sit still. I've been married to Teresa for seventeen years, and we have a son, Rudy, who is fifteen and taller than me, and who considers this page the most embarrassing thing I've ever done, which is saying something.

I was born with Moebius syndrome. I have never been able to smile. Or frown, or raise my eyebrows, or wrinkle my nose. My eyes don't move from side to side, so if you throw me a ball, I turn my whole head to follow it, like an owl. I don't catch it, but that's not the Moebius.

The joke about me, which I made up myself, is that I'm the only caricaturist in Arizona who can draw every expression there is except his own.

What Moebius syndrome is. I'm not a doctor, so this is the plain version, as doctors have explained it to me and to the families I know. Please ask your own doctors for the details that fit your child.

Moebius syndrome is a rare condition that a person is born with. The nerves that control the muscles of the face (the seventh cranial nerve) and the nerves that turn the eyes outward, side to side (the sixth cranial nerve) don't develop the way they should. So the face can't make expressions, and the eyes can't look left and right, though they can usually look up and down. Other nerves are sometimes involved too, and some people with Moebius also have differences in their hands or feet, like clubfoot. It's named for a German neurologist, Paul Julius Möbius, who described it in 1888.

The cause is not well understood. Most of the time it seems to just happen, and it's rarely passed down in a family. Rudy doesn't have it.

Some things that matter early:

• Feeding. Many Moebius babies have trouble sucking, because the muscles around the mouth don't work well. Getting help early, from the doctors and feeding specialists, makes a big difference.
• Speech. Sounds made with the lips, like b, p and m, can be hard. A speech therapist can help a great deal. I say my own last name very carefully.
• Eyes. Some of us can't close our eyes all the way, so the eyes need to be kept from drying out. Ask the eye doctor.
• Intelligence is usually not affected. I want to say this as loudly as a man with no facial expression can. A still face is not a slow mind. Don't let anyone treat your child as if it were.

The newer operation. In recent years, some surgeons have begun doing an operation that moves a small muscle, usually from the thigh, into the cheek and connects it to a nerve that works. With time and practice, a child can learn to use it to smile. It's a big operation and it isn't for everybody, but some of the families on our list have looked into it, and one of our girls has had it. Ask your child's doctors whether it's something to consider. It came along too late for me, and I've made my peace with that. I'm glad it's there for the kids.

Growing up with it. When I was born in 1954, nobody in Tucson knew what to call what I had. The doctors told my mother it was "some kind of nerve problem" and that I'd probably be slow. My mother fed me with a spoon and an eyedropper for months, and decided on her own that I wasn't slow at all. She was right, and she never let a teacher forget it.

I didn't hear the word "Moebius" until I was twenty-two, from an eye doctor who'd read about it. I went to the library and looked it up and sat there for an hour. There were other people. I'd had no idea.

School was hard in the ways you'd guess. Kids said "Why are you mad?" and "Smile!" and worse things. Teachers thought I was bored or sullen, because my face never showed I was paying attention. One teacher in fourth grade sent me to the principal for "insolence" because I didn't look sorry. I was very sorry. I just couldn't show it.

Third grade is when I started drawing faces. I'd draw the kids who teased me, and I'd make them look ridiculous, and then I found out that if I drew them looking a little bit heroic instead, they'd stop teasing me and ask for another one. That was the most useful thing I ever learned, and I learned it at eight.

How people without facial expression show what they feel. Teresa says she knew I liked her because I talked faster when she came into the room. That's the whole secret, really. When your face doesn't move, everything else learns to work harder:

• The voice. I put a lot into how I say things. Faster when I'm happy, slower and lower when I'm serious. Teresa can tell my mood from "hello" on the phone.
• Words. I say what I feel out loud. "I'm really glad to see you." "That hurt my feelings." "I'm smiling right now." Most people never have to say those things. I do, and I've come to think it's done me good.
• Hands. Thumbs up, a hand on the shoulder, a hug. I am a big hugger. My son would like me to stop at the school.
• The laugh. I can laugh, and I do, loudly. People look around to see where it came from.
• The rest of me. Shoulders, posture, leaning in. Faces are only one of the ways people talk.

What I'd tell parents.

• Your baby is in there, all of him or her. Talk to your baby. Sing. Your baby is smiling on the inside, I promise you, even if you can't see it.
• Get help early with feeding and speech, and keep after the eye care. These matter.
• Never let anyone assume your child is slow because the face is still.
• Teach your child to name feelings out loud. "I'm happy." "I'm upset." It will be one of the best tools they ever have.
• Give your child something to be good at that makes people come closer. For me it was a pencil. For one of the kids on our list it's a trumpet. For another it's terrible jokes.
• Find other families. You don't have to figure this out alone. That's what the mailing list is for.

What children at school can be told. Kids do much better with a plain explanation than with silence. Here's what Maribel's dad, Clayton, and I worked out for her preschool class this spring. Put in your own child's name and borrow it:

Then let the kids ask questions. They'll ask the ones grown-ups are scared to, and once they have their answers, they go right back to recess.

The list. In 1997 the Tucson paper ran a feature about me, the draftsman who draws caricatures at the county fair and can't smile. A mother in Phoenix named Jodie read it. Her son had been born with Moebius the year before, and she had never met a grown-up who had it. She wrote to me. We wrote back and forth for weeks; she asked everything, and I answered everything I could.

Then she found another family, and they found another, and I got tired of forwarding letters, so I started an e-mail list. It has fourteen families on it now, from all over the country, and two of our members have Moebius themselves, like me. We share what works, what doesn't, what the doctors said, and a lot of brag stories. If you have Moebius, or love somebody who does, you're welcome to join. How to join, and meet the families.

Write to me: [email protected]
I'll answer, and if you send me a photo of your child by regular mail, I'll send you back a drawing.

visitors to the sketchbook since June 1998:

last updated Sunday, August 29, 1999
© 1999 Walter Licon. Drawings described by the artist.