MOEBIUS SYNDROME AND "THE DOCTORS" SHOW

I am so glad that the Templer family, and especially their son Maddox, were able to go on "The Doctors" television show, which aired yesterday for the first time (and if you have not seen it yet, you can view the episode here).  It is so important for more people around the country and around the world to learn more about Moebius, and of course it's also important for Maddox to get the help he needs, and that his family wants for him.

So I am very glad that the Templers did it, and that the show found the family and did the episode.  Now, having said all that, I do have one criticism to make.  It's not a criticism of the family and it's not of the show in general.  And by the way, in addition, I completely understand the desire to have the smile surgery, whether it be for oneself (if one is a Moebius adult) or for one's child if you are a Moebius mom or dad.  It is in so many ways natural for you to want to see your child smile, and for that child to want to do so.  If the surgery is something you want, and it can be done, then it is a perfectly legitimate choice to make, and I don't want anyone to think I am criticizing that, either.  But something said on the show raises an important question. 

At one point, early in the show, one of the doctors who I presume regularly appears on these episodes was reacting to the fact that young Maddox cannot smile.  He was ER physician Dr. Travis Stork.  And he said: “Not having a smile is a huge emotional problem for anyone."

Hmmm.  Well--I suppose it can be.  Certainly for many of us there are times when we wish we COULD smile, when we wish we could make all those facial expressions that allow one to "say" something without actually saying the word.

But you know, based on all the children, teens, and adults with Moebius I know, I have to say, Dr. Stark--really, you're wrong!  Not having a smile is NOT a huge emotional problem for all of us, nor is it, I think I can say with confidence, a huge emotional problem for most of us.  I know that's what many people assume.  They've been able to smile for all of their lives, and they can't imagine not being able to do so.  I know that's what many in the medical community assume.  I believe their thinking runs along the same lines.

But the fact is, and so many of the persons I know in the Moebius community will confirm this, there are thousands of us out there in the Moebius community right now.  We cannot smile.  But we get along just fine, and we have satisfying lives, and we are not weighed down by a "big emotional problem." 

Why not?  I think there are many reasons.  We've lived with Moebius Syndrome all of our lives.  Thus, we've lived with not being able to smile also for all of our lives.  And you know, when you've never been able to do something, you learn how to deal.  You learn how to live with it.  For example, we find, and we establish relationships, with the friends and family who we know will not judge us due to our physical differences, who will not mind the fact that we can't smile.

I think also there is the fact that we are intelligent people.  We know we can't make many facial expressions.  So we learn to compensate.  We use our hands.  We use the inflections of our voices.  We have great senses of humor, and we laugh--loudly!  And people know when we laugh.  We learn to convey expressions in ways that are not directly connected to our faces.  And you know what?  The people who know us, the friends and family who know us, they learn how to understand exactly how we are feeling.  As one of our favorite expressions goes, we smile from our hearts.  And the people who know us can tell when we're doing it.

And so I hope the medical community increasingly gets this message.  A smile is a great and beautiful thing.  I think most of us, at one time or another, have wished we could do it.  Thus I understand why some want the smile surgery; so that they or their child could do this beautiful thing.  And I understand why some assume that not being able to smile is an "emotional problem"; that's something that's been taken for granted for years.  But remember--it's not always good to assume.  No, we can't smile.  But we smile from our hearts.  We learn to deal.  We learn to compensate.  And we have beautiful lives.