DO WE "SUFFER" FROM MOEBIUS SYNDROME?
This was a question that came up on Facebook very recently.  A blog post, written by someone who does not have Moebius, was discussing the presentation given by our good friend Tim Smith at our recent conference; and in describing it, the blogger mentioned Moebius "sufferers."  And thus the question arose:  do we, who have Moebius Syndrome, "suffer" from this condition?  Is that a good word to use in describing what we have?

It appears that the majority of those who have weighed in on this so far don't really like the use of the word.  I tend to agree with them.  But let's think it through.  After all, as my friend Teri said on Facebook, having Moebius is no picnic.  It's most definitely not always fun.  There are the physical challenges.  Some of us are often in pain.  There's the staring, the seemingly permanent designation by some others as being "different", and facing prejudice because of it.  I don't know that anyone enjoys that.  There certainly are the occasions where I myself say, inwardly, "Geez, I wish I didn't have this."

But still.  Is it really accurate to say we are Moebius "sufferers"?  I think not.  Here's why.  First, when I think of someone who "suffers" from something, I think of a person who is stuck with a sickness, a disease; and he or she is so burdened with it that there is really nothing he can do about it.  Usually, in my mind, I picture that person in pain, or permanently disabled; with little chance to combat it.  He or she often, at least for a good while, has to sit there, and take the pain, deal with the disability; and that's all there is to it.

Yet here's the thing:  for people with Moebius Syndrome--certainly everyone with it that I can remember I have met--we do NOT just "suffer" from it.  That is--it's not true that there's little we can do about it, that we just have to sit there and deal with a permanent disability about which there's nothing we can do.  That's not us.  Instead--we compensate.  We figure out ways around things.  We learn.  We adapt.  We do things people say we can't do.  When some of us were babies, doctors said we'd never be functioning adults.  But we are.  Some think we can't go to and excel at mainstream schools.  But we do.  They think we'll never have jobs.  We get them.  People assume we can't drive cars.  But we do.  And on and on it goes.

And we do this because we don't simply suffer from something that gradually wears us down and even kills us.  Instead, we learn and adapt and figure out ways to do what we want to do.  So no, in my mind I don't suffer from Moebius Syndrome.  Instead, I'm an individual who just happens to have it...and tries every day not to let it hold me back.  And I think so many of you are the same way.

"Live life to the fullest."--many people, daily. :+)