Sandy

“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., by 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.

Sandy