Walk a Mile in My Shoes Wednesday: Dave Freelan on Living with Moebius Syndrome

Today's Walk a Mile in My Shoes Wednesday post is going to look a bit different, because chances are, you won't ever actually walk this mile. You may never even personally know anyone who does, unless you know my dad. :)

In the decade (plus) that I've been blogging, some of you have asked why my dad never smiles for pictures. I've thrown out quick answers, but this is not something he hides, so I asked him if we could just feature it on the blog today! My dad has Moebius Syndrome, which is an extremely rare craniofacial/neurological disorder that only affects somewhere between two and twenty of every million people. (Or at least that's what researchers estimate. Clearly it's rare enough that I imagine research isn't easy!)

There is actually a website with some really great information if you'd like to read more about it, but the quick explanation is that this disorder's main symptom is facial paralysis. The site states that those with Moebius cannot smile or frown and typically don't have the ability to move their eyes side to side. (I actually had to ask if Dad could move his eyes that way. Almost forty years in the family and I didn't know! He can, but apparently most cannot.)

Some people have pretty severe complications that can include cleft palate, club foot, skeletal deformities, respiratory issues, hearing loss, poor eyesight, autism, and more. Dad doesn't struggle with most of that. (Well, my Mom would tell you has hearing loss, or selective hearing at best, but he is 85, so hearing loss kind of goes with the territory.) He does wear glasses, but I don't think his vision loss is atypical. Lots of people wear glasses!

I spent some time talking to Dad this week about what he'd like you to know about life with Moebius. I don't have bullet points for you, because Dad isn't really a bullet point kind of guy. (If you've had him for a teacher, you're probably nodding vehemently right now - HA!)

Let's start by talking about his eyes. Part of the facial paralysis includes his eyelids. He can't close them. For real. He has them and could pull them down over his eyes if he wanted to prove they exist, but they are permanently open, and he can't blink. This causes a number of issues for him that you might not think about unless you tried keeping your eyes open for an extended period of time. One of the big issues is sensitivity to light. Think about it! When you go outside and it's bright, what do you do? You squint. Or you close your eyes. He can't do either. So when he walks out and it's super bright, it's painful! This is why he always wears sunglasses when it's bright (inside or out) and sometimes he even wears two pairs.

(An example from my wedding day. The sunset was ahead of us as he walked me down the aisle, so he kept his sunglasses on and looked down. To be honest, I needed sunglasses too! I look pretty angry in most of our wedding pictures because of the squinting!)

Another issue is his inability to protect his eyes from irritants in the air. Like I said, he wears glasses, and has for many years, so that protects his eyes a bit, but if dust or grass or any such thing flies around, he can't stop it from getting into his eyes. (This has not stopped him from cutting and chopping wood for the last fifty years, however. Sawdust for days!) As he has aged, his eyes have gotten very red and watery, and several years ago he actually had his lower eyelids lifted because they were drooping so badly. (I called it his facelift, but he didn't like that term so much. HA!)

He told me (and this was news to me!) that his eyes kept him from military service. He was drafted for the Korean War, but when he went to Indianapolis for testing, he failed the physical exam (before he even got to the exam) because of his eyes. Not because of his quality of vision, but because he couldn't protect his eyes from dust and dirt, which would impair his ability to be a soldier. He said he still has a card that shows he was classified as a 4F for the military.

One good thing about not being able to blink? Can't lose a staring contest. He's won every single staring contest he's ever had. :)

(Dad and Mom on their wedding day in 1954. This would have been when he was about 22 and not long after the military physical.)

Another part of the facial paralysis that you might not think about is his inability to move his lips. He can move his jaw, but not his lips. He said when he was a kid, if he wanted a drink of water, it would run out the corners of his mouth because he couldn't form his lips around the cup. Also, back in the day, cups were either glass or tin. Plastic and paper cups did not exist. He had to teach himself to maneuver his jaw to fit the cup so he could drink and if it was a glass cup, he would sometimes break it while trying to drink.

He had to learn to speak clearly (which I actually think he does very well), and that was not overly easy either. Letters like B, M, and P are formed with lips closed, and he couldn't get the letters to sound right. Again, he had to teach himself to speak clearly by moving his jaw in certain ways to say those sounds.

I'm not sure when speech therapy was invented, but it was either after Dad was a kid or his family couldn't afford the luxury, because he didn't have any sort of therapy as a child to help with things like speaking clearly or drinking successfully. Because he didn't know life any other way, he just figured out on his own ways to compensate as necessary.

Interestingly enough, Dad doesn't remember anyone ever pointing out to him that he was different. I asked him if he was ever bullied, and he said back then no one even knew what bullying was. He figures someone probably made fun of him at some point, but that was just part of growing up and he never gave it a second thought. He never remembers his mom or any family member - or any teacher, for that matter - mentioning that he was different. He said perhaps a teacher said something on the side to his mom at some point, but he never knew.

Obviously over time, he figured out something was different though, and he was a college student at Ball State University when his mom arranged for him to meet with a doctor to be examined to find out what was wrong with him. Yes, that's right. He was in college - for a masters, no less - and he did not know what this condition was called. The doctors could not diagnose it, but they did write a report stating he had a genuine medical issue. (He presented that at his exam for the military so they would know he wasn't just making up this weird excuse about not being able to close his eyes. I mean, who would believe that? That was how he ended up failing the physical exam before it even began.)

As I mentioned earlier, Dad decided to be a school teacher, and he went all the way through college and student teaching without anyone mentioning his differences. He said right before he was done, a professor stopped and asked him if he really planned to be a teacher. When he said yes, the professor asked if he thought maybe this facial issue might be a problem. That was the first time Dad had ever been approached about this being a limitation in his life. He didn't blink (literally) and told the professor it was not an issue. Dad didn't see it as a problem because no one in his life had ever made it a problem. And that was the end of it.

Dad did indeed go on to be a public school teacher for over 30 years, and he frequently filled in as a guest preacher and singer at area churches. He's also hosted a radio program for almost fifty years. Clearly he has not allowed a facial paralysis to stand in the way of being a strong communicator, and I think that is pretty amazing.

Every year, on the first day of school, Dad would explain to his students about his paralysis, so they didn't spend all day every day wondering why he looked the way he did. (Apparently he preferred their brain power to go toward learning the actual subjects he taught.)

Most mind-blowing of all, Dad was seventy years old before he had a name to put with this condition he'd had his entire life. At seventy, he met a gentleman named Ken who has Moebius Syndrome, too. It marked the first and last time he's ever met anyone in person who has this. Ken's symptoms are more severe than Dad's, but he finally had a name to put with a condition and a friend who actually understood the issues he faced.

According to the Moebius website, it's unknown what causes the condition, and at this point, they point to environmental and genetic factors for the cause. No one else in our family, before or after Dad, has had it. (And he used to tell people his mom suffered a scare from her mother-in-law while she was pregnant with him, and that's what caused it. Ohhhhhh, Dad and his mother-in-law jokes. NOT TRUE.)

So that's my dad's 85 year journey with Moebius. Most of us who see him all the time are used to it and just forget he has it. (And for the record: he can make the appearance of a small smile if he tries really hard. I am the only person who requires that when taking photos. And I always forget when I'm taking group photos with my timer and tripod. That's why he rarely "smiles" in group shots but usually looks a bit more smiley in individual photos.)

vs.

My mom added that one other benefit of Moebius is never having a facial wrinkle. He's 85 and has perfectly smooth skin on his face. No crow's feet, no forehead wrinkles...nothing! (Not that she's jealous...)


I know this was long...thanks for reading. Hope you learned something new today! If you'd like to see the rest of the Walk a Mile in my shoes posts, go here!