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.....
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.
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......
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
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.
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.......
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.
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
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.
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.
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! "
medical staff hadn't a clue as to how much their ignorance hurt!
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!
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
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......
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 .........
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.
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!
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!
in yourself, because NO ONE is a "mistake"!
All the best, Sandy Goodwick