While it is true that all children experience a certain degree of teasing, some children, due to a variety of factors, are teased a lot more than others.  They may have a physical disfigurement, wear un-'trendy' clothes or behave inappropriately at times.  It is for the children who have no control over their difference that I write.....
When I was born, my parents saw that I had a facial deformity and later learned...from me when I finally learned (at age 22)...that it was something called Moebius Syndrome... a rare disorder that involves facial paralysis. I can't smile or frown, and some other people with Moebius can't blink or move their eyes from side to side. 
One of the most traumatizing memories of my life occurred at a teaching hospital .... and yet, if the experience was fully observed and critiqued by someone from that era (1963) I doubt anyone would have even considered anything was wrong... yet they were terribly wrong...... 
"Back then" there were many people with undiagnosed, congenital conditions.  Maybe it was just a medical fact that if a doctor couldn't do anything for you re: ameliorating the effects of the condition, then certainly the name would be of inconsequence also.  There probably was nothing in medical literature to support any other conclusion - I doubt any medical doctor gave it much thought re: how significant a name would be to a rare disorder. 
But to those of us with these rare disorders, that name - those simple words that are so insignificant to anyone else ... that name produced a sense of being part of the world - having a name meant that I wasn't alone, that someone else also has what I have. 
When I was 13 I went to the University of Chicago Neurology Clinic  to learn if anything could be done about my facial paralysis. The medical establishment most assuredly had no idea of the utter trust and high esteem I had given them.  For I had watched Ben Casey, Dr. Kildare and Medical Center and was as sure as any 13 year old could be that DOCTORS KNEW EVERYTHING!  They were the heroes, the absolute vessels of knowledge and insight....... 
I knew - JUST KNEW - they would fully know exactly how I felt about not smiling - how it was sooo painful to even think about that I couldn't even think about it!..... that I was an absolute pariah and needed help in helping others know that they couldn't get cooties from my utter pariah status...... I knew they would know all about how I felt within ........  and provide me with some real directives that could help make my experience with facial paralysis less traumatic. 
But of course, there was no way I could verbalize any of this because I had been trained to NOT talk about my feelings...... so everything was locked tightly within. 
The doctors prodded, poked and wrote notes........ all of them absolutely expressionless, as though I had nothing any more or less than anyone else.  Then at last a group of maybe four white men (I am white but due to teasing, etc., I don't relate to being 'white') ..... kinda came together out of nowhere and said there was nothing they could do.  That was it.  Nothing they could do. 
En route home my mother bought me some colored pencils to compensate for my not being able to smile. I think I cried some when  got home but nobody had a clue as to what to say, etc. 
The doctors don't know it but their silence was deafening to me........  Their silence told me that they must be thinking "YOU ARE SOOOOOOOOOOOO WWWWEEEEEIIIIIIIRRRRRRRRDDDDD THAT WE CAN'T EVEN GIVE WHAT YOU HAVE... A NAME! " 
The medical staff hadn't a clue as to how much their ignorance hurt! 
Teasing is ignorance disguised by contempt or disregard.  While no one that day teased me, the pain from the ignorance was just as painful......... imagine, 9 years later (when I am 22) I go once again for a diagnosis - only to read for myself that the diagnosis was written down in the medical papers but never told to me!  Believe me, I would have known! 
This kind of learning - getting a sense of the unrealized pain caused by ignorance - is what future doctors and nurses need to understand.  They need to understand that their experiences and caring do not match up 1:1 with that of a patient's experiences.  They need to understand that there are parts of the 'condition' that are not written in textbooks or taught in lectures. 
It's been many many years since that day I went to the Neurology Clinic...I used to think of how weird or strange I was..... I never ever EVER thought THAT could change!  But it did......
I learned that I wasn't the first person in the world to have Moebius
syndrome.  I learned others had it, and they even looked like me!  And,
while I think I'd rather look like a gorgeous movie star, knowing that I am NOT "the only one" made me feel rather ......... NORMAL!
It took me a loong time to finally meet another person with Moebius syndrome!  I never EVER could have thought that when I grew up, I'd know HUNDREDS of people with Moebius syndrome!  We're alike in some ways, and different in others.  In getting to know other people with Moebius, Ilearned more about myself.
Now, that pain of being different, of feeling weird and all alone ........it's gone.  All the way GONE!  Now I can see how having to struggle with some things that were so very hard made me the person I am today - and I think I am a pretty good person! 
I have a sense of humor that never quits.  I like to learn new things. Because I really worked hard to "know myself", I am comfortable being me. I learned that even when things are paralyzed, broken or don't work too well 'on the outside', our heart and soul and mind ........THOSE THINGS are most definitely NOT paralyzed, broken or don't work!
Believe in yourself, because NO ONE is a "mistake"!

All the best,  Sandy Goodwick 

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: April 7, 2005