Across the Miles
“in my day…” is the kind of phrase that didn’t make much sense to me as a kid because I had no conceptualization of experiences beyond my 6 years or 8 years or 11 years. Those “in my day” stories were akin to the pioneer stories I liked to read … long ago and essentially innocuous…
But now I think an “in my day …” story is needed … While many may marvel at the ‘distance’ we’ve come, others will <know> the distance, because they too have traveled its length.
Imagine growing up with a sense of being fundamentally <different> in the very way you as a little child think binds everyone else together … lacking a smile for warmth or kindness or even recognition of others. Pictures always include “SMILE!” … I never could. (None of us could have known ‘back then’ that in our aloneness, we would find others who felt that same way!)
While I was blissfuly aware of my differences as a newborn, my parents were faced with the yawing uncertainties of taking a child home that looked and acted so fundamentally <different> from everyone else’s baby. “Back then” (1950) babies were frequently ‘sent away’ to “state schools”. I have no idea whether any doctor (or anyone) ever suggested this. Even though Moebius syndrome was described in the medical literature 50+ years earlier, the NAME was never given to my parents. My asking, as a young child, why I couldn’t smile, etc., probably was akin to my parents feeling that the scar tissue they had just formed a few years earlier – wondering whether I’d live, what I could do, etc., – was being viciously ripped away again as I attempted to understand my own differences.
My parents had no one to talk with – no one to say, “I <understand>…”. And I had no one either – so, as a young child, all I knew was that I must be the only person on earth, the solar system, the Universe … who couldn’t smile. It’s mighty hard to be six years old and contemplating the enormous depths of such aloneness, all alone. And seven … and eight … 10 … 14 … 18 …
Quite literally, to “get there” and really ‘get’ this kind of aloneness, you need to go find a cave and get lost in it for … well, since you’re completely lost, you’d never know “how long”. You just know you’ve tried every conceivable exit and never got out.
It’s like to the world this enormous problem is absolutely of no concern. You go to school, to the store, to family gatherings … yet at a level no one else can see, you are completely all alone. It’s a PAIN BUTTON you know exists within, you can ignore it but its still there.
When I was 13, I went to a neurology clinic. My parents were told that maybe when my head was adult size, there was ‘something they could do’. Back then, Ben Casey, Joe Gannon, and Dr. Richard Kildare single-handedly solved all the world’s medical problems in one hour, on TV. I thought real doctors could do it too – that <somehow> they would know the depths of my aloneness …
I was there for much of one day. At the end, a group of white coated white male doctors looked at me and essentially said, “There is nothing we can do.”
They never saw found my yawing aloneness.
I took everything they said, and didn’t say, to heart. I “got it” that I really shouldn’t feel all that much about being “the only one” – it didn’t appear to be much, to them. The pain button I always had ‘somewhere’ – the one that reminded me of how ‘different’ I really was … now I modified it because I “shouldn’t feel like that”.
I had decided to become a teacher while just a child. Beyond the “fun” of making red pen ‘check’ marks on spelling papers, I wanted to ‘undo’ my own school experiences of teasing, etc., b y becoming the world’s most insightful, resourceful, empathic teacher. I was going to rescue all the world’s children!
I *did* learn – in college – that I have humor, intelligence, real friends who really liked me, professors who valued my intellect … The “pain button” seemed ‘farther away’. I was learning to redefine who I was as part of a larger group.
And then I learned – I had something called “Moebius syndrome”. And it had been formally diagnosed at the neurology clinic with the white coated doctors who told me nothing. Believe me, having a NAME would have meant something! Just a NAME meant that somebody else, somewhere, had essentially the same thing.
An epidemic! Two people! In a world of billions – believe me, just knowing ONE other person existed felt … cozy!
It was 1872 … “Index Medicus” was the research tool (a well thumbed reference!). I found some medical articles – and saw a picture of someone who looked like me! O Happy Day! I wrote the authors, but none of them could connect me with someone else.
But at least I knew – at age 22 – that I wasn’t alone any more. “I have Moebius syndrome” felt downright NORMAL to say!
In 1979, I learned of “Forward Face” in New York City. I wrote its’ director long, emotional letters trying to understand my own experiences and conclusions … she wrote back with the awesome words that, indeed, others DO understand. One woman, Frances Cooke MacGregor, had even done considerable research that verified so many of my own experiences and thoughts.
In 1982, a fellow teacher showed me the front page to the Los Angeles Times, whose headlines said, “Surgeons Try to Give Girl the Smile She Never Had” covered the front page. Later that night, I called Montefior Hospital and INSISTED that I speak to someone who can tell the patient that SHE’S NOT THE ONLY ONE! I quite literally wanted to wake up the entire world and let them know how happy I was! I finally found someone else!
And – in 1983 – I flew to New York City, where I met with Dr. Daniel Baker, who led the “Facial Paralysis Clinic” at New York University Medical Center. (CLINIC! A **clinic**!! By default, there MUST be at least hopefully 2 or even 3 patients!). Dr. Baker had performed smile surgery on another woman with Moebius – Nancy and I met in Manhattan – O HAPPY DAY! – and then went to a ‘Forward Face’ monthly meeting, where our story became part of the newsletter.
And then in 1991, I learned of “AboutFace” in Canada – and they had contacts of others with rare conditions. Through them, I found Diane Breton, a nurse who had written a medical article, “I An Sniling”. It was so wonderful to connect with Diane that I called AboutFace again to see if they knew anyone else with Moebius.
And they connected me with Lori Thomas (Chelsey’s mom), who lived just 20 minutes away! And she knew 2 other families with kids that had Moebius. A CROWD! So, on July 5, 1991, five people with Moebius syndrome (2 adults, 3 children – and their families) met at my house in Glendale, CA.
We were sure this was the largest Moebius gathering on earth – we later learned the the UK had beaten us in size! But it was a start. Our story and picture were in the next “AboutFace” newsletter. We *knew* the tremendous personal costs of being “the only one”, and wanted no one else to experience such utter isolation.
And in the past 20 years we have made great strides. We now have national organizations that focus on Moebius syndrome, plus others that address many of the unique needs – from AboutFace in Canada to Changing Faces in the UK, NORD in the USA …
Now parents speak of hours or days or months of ‘not knowing’…. and people fortunate enough to access the internet successfully can find “us” with organizational websites, social groups, emails, blogs, journal articles, chats ….
Chelsey’s smile surgery made media attention, Mallory was on “Oprah”, many others have had fund raisers and passionately written stories in newspapers and magazines…
I never, in my wildest imagination, could ever have conceived of such awesome progress in my own lifetime.
But I know my own story is not unique – aloneness doesn’t become “better or worse” purely through the length of time one endures it. And Moebius syndrome isn’t the only rare condition out there.
BUT … in reaching out – in having “Moebius Syndrome Awareness Day” AROUND THE WORLD, not only can we possibly find others with Moebius … we can teach others who don’t have Moebius that it is important to value and understand the many differences we ALL share.
Letter to the Teacher
I’m giving you this because I want you to understand more about me. You’ll see I am just like everybody else in your class in lots of ways, but in some ways, I’m not the same. I need you to know how I am “different” from the other kids in our class so you can help make school a safe place for me.
I have Moebius Syndrome, which means that I have a paralyzed face. I was born with it. I can’t smile, close my eyes completely, blink, frown or show any facial expression. Believe me. I would much rather have been born with something else because it really hurts at times to have this! Maybe the hardest part about Moebius is that it is so rare and hard for other
people to “understand. Who ever thought that somebody could never smile?
Besides the facial paralysis, kids with Moebius can be affected in many other ways – speech difficulties, missing or webbed finger, clubfeet – and a lot more.
The hardest part about having any disability is when people are teased, looked ‘down’ upon, or
thought to be “weird” or different. I can feel really embarrassed about having Moebius at times, and I’m still learning how to handle this. Teacher, I really need you to understand how important you are in helping me to be the best I can be! I have all the same feelings, needs and emotions as anyone else – but I can’t show them on my face. Help me to use my voice and
body language so that people can read my feelings through them. And help others to know that we ALL have differences that need to be respected.
These are some of the things I have trouble with, in having Moebius…
• My face always looks the same, no matter HOW happy or sad I am – so please know that my feelings are just as real and strong as everybody else.
• I sometimes feel really awkward when pictures are taken, because I can’t smile. Maybe, instead of saying, “SMILE!” you could say, “Look CUTE!” or something else. Maybe we can all “not smile” for the camera sometimes?
• Because Moebius is so rare, I feel very alone and different at times. Did you ever feel all alone or different? Maybe we need to learn about times when other people felt all alone and different, and how they helped themselves – and others. I bet there are many famous people who once felt alone and different too! Don’t you think learning how to handle hard feelings is
something important to learn?
• When I eat, I can’t shut my mouth completely so food might collect on my teeth. Can you gently remind me when this happens …
• I can’t shut my eyes like other people so I roll them back in my head.
• My speech may not be as clear as other kids’ speech, and my face looks different when I speak. Please give me time to answer your questions though! And remind others that they need to listen, not ‘stare’
• Kids may look at me funny or tease me because I look different. This can hurt so much! Please help me learn ways to deal with this! And please help us all know better ways to get along with others!
• Sometimes people may think I am dumb or not interested because I don’t show facial expression. Help the others in our class to ‘see my emotions’ through my words, gestures and body language.
• My eyes don’t “follow” balls in the air, so playground games can be hard. Can you help me find something at recess that I am good at?
• It’s important to ASK ME if you don’t understand what I am saying, or how I feel. I’d rather you ASK ME a question (because I have to learn how to live with Moebius!) than not ask me anything.
I’m not the only one on earth with Moebius – or even with a disability!
People in many states have enacted laws so that schools teach kids about people with
disabilities. Maybe our state already has a law about “Disability awareness” or “Disability History”. In 1991, the United States enacted the Americans with Disabilities Act. This law says that people with disabilities can go to work and school and so many other places, and that all they need is some help at times to do their work or to go to the store. We have this law
because, without it, people DISCRIMINATE. Ignorance is never good!
Grownups with Moebius (and so many other disabilities) have shown parents that it is really OK to have a disability. There are grownups who have Moebius who are doctors and nurses, teachers and professors, librarians and truck drivers. I know I am glad to know that when I grow up I can be the best I can be, because others already have done it!
We are celebrating a very special day – its called Moebius Syndrome Awareness Day, and it is on January 24, 2013. People all over the world are planning to CELEBRATE! We want to
celebrate – because we have found strength in finding people who also have Moebius syndrome in places all over the world! We want to CELEBRATE because we have learned to live with avery challenging condition! We want to CELEBRATE because we know that it is OK to be
different and still feel really good about ourselves and what a positive difference we make in our world!
Maybe we can CELEBRATE in our class! We can learn to talk about the many ways in which people in our class look different, talk different, go to different places for worship, even vote for different people … and learn how to respect those differences. People with Moebius syndrome FROM ALL OVER THE WORLD have shared their ideas and pictures and stories –
and you can find them all at www.manyfacesofmoebius.com.
I am not the only child in the world with Moebius. There aren’t millions of us, but there are a growing number of people we have found who live all over the world! We have many organizations around the world that have conferences, and many people find and connect with each other online.
I’d love to tell you that I am this perfect child (except for the Moebius part) but my family will tell you right away that I fool around just like anybody else! I guess I’m really pretty normal!
Thanks for reading this and learning something very important about me. I think you’ll soon find out there’s a lot more to me than just Moebius syndrome!”
(This letter was originally written by Sandy Goodwick, a teacher who also has Moebius
syndrome. She wrote it when she learned – during the 1990’s – that kids with Moebius
syndrome were still being teased much like she was as a child. It has been used and adapted by parents and children in many different places.)