"THE FAULT IN OUR STARS"...AND US

Today I want to write my own musings about something--and that is the book "The Fault in Our Stars", by John Green.  It's a powerful book.  I've read it twice now.  It has a lot to say, to all of us.  It is very profound.  And it's a book that has something to say to those of us in the Moebius Syndrome community.

Now, of course, this is not a book about Moebius Syndrome.  Instead it's primarily a book about two young people with cancer.   So I of course do not mean to say at all, in drawing connections here, that Moebius is exactly akin to cancer.  Cancer can be directly, and far too quickly, life-threatening.  Moebius need not be; many of us with it live very long lives.

But still, one thing John Green's book does is make a point:  that people with cancer often are seen as "diferent."  They're the other.  They're stared at.  They are (sometimes unintentionally) ostracized.  People don't want to be around them.  After all, it's no fun to be around people who are sick, who may die (and soon).  In other words, if you have cancer, you have a difference.  And often it is a physical one, very easily seen.

People with Moebius Syndrome can easily relate.  We too are seen as "different."  We too often have physical differences, easily seen--our eyes might not be straight; we might have club feet; our speech is affected; and of course we often cannot show facial expression.

And thus, like people with cancer, we make some uncomfortable.  Some people don't want to be around people who look different (maybe it reminds those who are seen, by society, as "good-looking" that such was not and is not guaranteed).  They don't want to be around people who are not seen as "normal."  We too then get stared at.  We get put down.  It's assumed there are a lot of things we can't do.  In "The Fault In Our Stars", Hazel and Gus don't want to be seen merely as "Cancer Kids."  Nor do most of us want to be seen only as The Person Who Has Moebius, or The Person Who is Weird/Different/Fill-in-the-blank.

But just as John Green's book shows us that persons with cancer are not simply persons with cancer--they can and do have lives and loves way beyond that--the same is true for us with Moebius.  Hazel's mother at one point in the book tells her that "you deserve a life"--one not spent simply at home, waiting to die.  And the same is true for us.

In the days to come, we'll explore this book and what it means for us further.  In the meantime--if you haven't read the book yet, do so!  You'll be glad you did.