Beginnings

So this is something that grew out of the recent Moebius Syndrome Conference, held just outside of Denver, Colorado July 30th to August 1st (if you didn't know there was such a thing, you can read more about it here).  (And if you wonder what kind of people attend such a conference, go here.)

Anyway, there I attended a session on Moebius Syndrome and the Internet.  And one thing stuck out to me:  we really don't have a continuing blog, written by someone with Moebius Syndrome, which discusses the daily tasks of living with it, thinking about it, dealing with it, etc etc.  So I thought--maybe this is something I could do.

Am I the absolute best person for the job?  Maybe not.  But I'm willing.  I hope I'm able.  I'm 48 years old.  My wife Lisa has Moebius Syndrome, too.  We both have jobs.  We deal with the world.  We deal with what we have.  We have a beautiful son, who interestingly enough doesn't have Moebius Syndrome at all.  He's happy, he's smart, and he smiles all the time...even though we can't.  Here's more on what we're all about...

It's an interesting life, dealing with Moebius Syndrome, or any facial difference or facial paralysis.  In my case, I can't smile.  I was born with club feet.  I can see out of both eyes, but only out of one at a time.  I don't have full mouth or lip closure; it can be hard control one's saliva.  One's speech is affected, one's sight is affected.  So yes, it'a an interesting, sometimes difficult, sometimes frustrating, life...but also one full of wonder, and achievements, and success, and it's never boring.  And there are more of us out there than many people think.  People talk about diversity.  You want diversity?  We're an excellent example of it.  But few know it.  Well, here we are...and so for those with Moebius Syndrome or with facial difference, for parents of children with it, for family members connected to it, for anyone interested in it or interested in life, because this is life...dealing with things...here we go!

YES, MOEBIUS FOLKS HAVE NOTICED THIS:
From a report in today's msnbc.com health section:
"Rudeness, even if it’s not aimed at us, can derail a day. It can spoil a meal and ruin a good mood. It can hamstring creativity and hamper job performance. It makes us feel uncomfortable and conflicted: We don’t want to be involved, but we feel like we should be."

You should see how it feels when it IS aimed at you...

JOB HUNTING:
Are you looking for a job? As all of us with Moebius know, being one of us and getting hired isn't always the easiest thing; you never know how others will perceive a facial difference (although we all can and do find jobs, and good ones). In any case, a new study suggests you not drink any booze during your interview process--it makes things even tougher:
""Job applicants who drink alcohol are perceived as less intelligent and less hireable by American bosses, a bias dubbed the "imbibing idiot bias" in a study published on Monday.  In a series of six related experiments, researchers from the University of Michigan and the University of Pennsylvania found that an association with alcohol caused observers to "expect cognitive impairment" in a job seeker.  "Merely holding an alcoholic beverage may reduce the perceived intelligence of the person," Scott Rick and Maurice Schweitzer wrote."

FOR MOEBIUS MOMS AND DADS:
Whether you have a child with a facial difference or not, I'm sure you saw this news yesterday--and here's some good explanation of it:
"Puberty starting in the first and second grades? Yes — that’s the deeply concerning trend that pediatricians like me have seen over the past 20 years, and Pediatrics has just released a study confirming our worries. From 1997 to 2010, the percent of 7-year-old white girls in the U.S. with early breast development (the first sign of puberty) jumped from 5 percent to 10 percent; for black girls, the jump was from 15 percent to 23 percent; for Hispanic girls, the number now stands at 15 percent....So why is this news such a big deal? For one thing, early puberty is terribly hard on girls socially, emotionally, and even physically.  Research shows that girls who start puberty early experience higher rates of troubled relationships. They get bullied and sexually harassed. And when third-grade girls look like sixth-grade girls, adults expect them to act older, which makes the girls feel crazy....The science community tells us that this phenomenon is probably related to “increased” nutrition — and, in fact, most of these young girls are overweight. Scientists also speculate that added hormones and other chemicals in foods may contribute.  So what do we do? No parent wants his daughter menstruating in third grade. Since we believe that early puberty is probably related to being overweight, let’s take the bull by the horns and get serious about helping our kids keep their weight down."

Read the whole thing...

TODAY'S MOEBIUS MOMENT:
Actually it comes from yesterday.  What's it like to deal with Moebius on a daily basis?  Well--so I'm teaching my history courses right now, second summer session, it's hot, it's approaching the end of the session...and one of my classes begins at 7 a.m.

I dunno about you.  But I'm not a great morning person anyway.  And that early in the morning, having to deliver about a two-hour lecture?  Ugh.  In the morning my mouth is kind of dry.  When I then have to talk a lot, my mouth creates for me extra saliva (I guess, anyway; sometimes I wish it didn't try to "help" me this way) to aid with the dryness.  But when you don't have full lip closure, it's easy to lose control of that saliva...especially when, like me, I use Ice Breakers to protect against any gagging reflex.  So it can all make for some challenges.

Know what I do?  I try to surreptitiously wipe my mouth when nobody's looking closely...and push on.  It gets better as the morning goes on.  By the end of class I feel better and sound better.  Keep going.  Sometimes it seems like my mantra.

"I now talk about my face.  I express my feelings about being disfigured.  I share my voice...[this book] is the story of accepting yourself, in spite of all your flaws."--David Roche, THE CHURCH OF 80% SINCERITY.  (find out more about this excellent book here.)