Category Archives: Moebius Syndrome

Diving into the wreck

I am here, the mermaid whose dark hair
streams black, the merman in his armored body
We circle silently about the wreck
we dive into the hold. …
We are, I am, you are
by cowardice or courage
the one who find our way
back to the scene
carrying a knife, a camera
a book of myths
in which
our names do not appear. – Adrienne Rich

The poet Adrienne Rich passed away yesterday, and in her obituary this poem was quoted.  I first read it, I think, in one of my college writing seminars and returned to it again often.

I think so much about life with a disability or medical condition, is akin to diving into the wreck of trying to find one’s place in a society that does not immediately have a place for you.  Sometimes I don’t want to explore that wreck.  I take another path, ignoring the glaring scene before me.  Other times I explore it, finding my way through and making my mark on it.  I think many people I know are the same way.

We search for ways to symbolically make our names appear in this world, to make a mark and be counted. To a certain extent everyone does this, but differences can make this path more perilous at times…

More music that inspires me…

If we go softly we might as well not make a sound
If we speak gently we’ll never break the crowd
If you keep hiding how will they know what you can do
I’m not risiding within these walls with you

Careful hearts might stay protected
But rebel hearts get resurrected

See I fire flames
Light up this town
Learn our every name
Or burn it down
Don’t go back to then
Don’t kill your voice
Stand like girls or men
But make some noise – Noise by Gavin Creel & Robbie Roth

So much of this song applies to life with Moebius and the importance of awareness and the sense of community we now have.  It’s important to “get loud” re: awareness in any way we can or feel comfortable.  We don’t need to shout from the rooftops or anything obnoxious like that but awareness in everyday life is important.  We can make a big difference if we think about it…

“The power of positive dressing”

I’m a big fan of this issue of Vogue for many reasons.  First of all, Adele is amazing and I love the fact that they featured a “normal-sized” person on the cover… and I can’t emphasize how much I agree with the power of positive dressing.

I can’t remember a time when I wasn’t just a bit fashion-obsessed.  I distinctly remember my cousins and I layering our bright neon Gap Kids socks and being ridiculously excited about matching Laura Ashley dresses (hey, it was the late ’80s/early ’90’s!).  My aunt gave me a subscription to Vogue in middle school… and my true fashion obsession grew.

Granted being fashion obsessed doesn’t translate to being able to actually buy what I see in Vogue (unfortunately!) but I think being fashion-aware and fashion-conscious really helps me feel better about myself and then present myself better.  Then people are more apt to pay attention and give me a chance.  It’s kind of like presenting yourself like you take care in your appearance gives people the chance to reassess their thoughts about what people who may look different from them.

So I stalk sale racks semi-obsessively, try not to buy too much (and amazingly enough am pretty successful at using restraint!), and embrace the fact that fashion does give me power.  It gives me power over how others see me, but more importantly over how I see myself.

Thoughts About Rare Disease Day 2012

January 29 is International Rare Disease Day.  Strangely enough, rare diseases are collectively not rare – about one in 10 people have one.  Or if you’re like me, you have/had multiple unrelated (or related, who knows!) rare disorders.  It’s striking, though, how common they are.  Everyone knows someone who has something.  And for me, I think that’s why I connect to Rare Disease Day.  I mean, raising awareness for Moebius syndrome is needed and wonderful but I like how Rare Disease Day contextualizes everything for me.  My experience, although unique to Moebius syndrome, is actually not that inherently different from people with a variety of different medical conditions.  But without Rare Disease Day and some of the organizations such as NORD who are working to unite the rare disease community, we wouldn’t be able to connect and realize that we share these similarities even with different conditions.  So for me, that is the take-away part of Rare Disease Day 2012: that we share so many similarities across disorders and conditions, and that need to learn from each other and work together to promote change and understanding.  And I think it’s happening, slowly but surely.  At least I hope so.

Moebius syndrome teddy bears have arrived!

Inspired by teddy bears with cleft palate surgery scars from the Cleft Palate Foundation, the Moebius Syndrome Foundation just ordered some bears of our own that will be available at the 2012 Philadelphia Conference (and online afterwards, depending on availability).  While we don’t have completely custom bears like Cleftline has, we have bears with very cute purple t-shirts.  One has “The Spirit of 2012 Moebius Syndrome Conference” logo on it and the other has the Moebius Syndrome Foundation logo and our unofficial motto, “I’m Smiling on the Inside” on it.

As a child, I was almost obsessed with anything I could relate to about other kids with disabilities.  Because I was also book-obsessed, many were books.  I would’ve been so excited to have these toys to play with, too.  I don’t think there were really disability-related toys when I was a child.  I remember being really excited to see that the American Girl catalog sold doll-sized wheelchairs, even though that happened when I was too old to really play with my dolls (bet my parents were thankful about that…)

So much of life with Moebius syndrome is not “fun”… so it’s great to have something cute and cuddly that is fun and spreads awareness of Moebius syndrome!

Music & Moebius

Sometimes music expresses feelings more aptly than just words could ever hope to. There are many songs that I love, while not specifically about Moebius syndrome, that I feel really express the experience of Moebius really well.  A few are linked on my sidebar.

But today someone linked to a song written by a friend of theirs about their daughter that I think is beautiful.  Here is “The Girl Who Smiles With Her Eyes”:

Stronger (What Doesn’t Kill You)

Musical thought for the day: Stronger (What Doesn’t Kill You) / Kelly Clarkson

One of my recent favorites, and as ridiculously cliche as it seems, quite applicable to life with any kind of adversity… such as living with Moebius syndrome.  Sometimes things seem insurmountable and daunting, but on the other hand I think I’ve met some of the most incredibly strong and resilient people within this community – both people with Moebius syndrome and families who struggle and succeed at finding their place in the world, something complicated for everyone but especially when you’re different. 

So yes, I have to say that Moebius syndrome has made me stronger and resilient.  I resisted admitting that for a while, it just sounded kind of patronizing and obvious, but I guess it’s true.

“Hope is the bravest most beautiful bird In the sky”

This is the story
Of a bird with no wings
But certain that it can fly
Sailing on love
Into the head winds
Forcing it’s way by and by

If only we were
As strong as this bird
Our spirit would never die

What do we name it
Hope is the right word
Hope is the bravest most beautiful bird
In the sky

Hope is a bird
Flies higher than others
And keeps all our dreams alive
Free of all doubt
Perfectly fearless
Fed by its will to survive

Imagine ourselves
Becoming this bird
We can when we dare to try
And see ourselves flying
Over the mountain
Hope is the bravest most beautiful bird
In the sky

Only hope can light the way
Only hope can heal the heart
Only hope can keep the clouds
From hiding the moon and the stars

If only we were
As strong as this bird
Our spirit would never die

What do we name it
Only one word
Hope is the bravest most beautiful bird
Hope is the bravest most beautiful bird
In the sky

Only hope can light the way
Only hope can heal the heart
Only hope can keep the clouds
From hiding the moon and the stars

This was a story
Of a bird without wings
And rose above everything
Never once giving up hope – Hope (2008), written by Paul Hampton, sung by Idina Menzel

Tonight I’m thinking about hopes… my own hopes, the hopes of people I see posting about Moebius Syndrome Awareness Day. In many ways, they are the same. In some ways, they are different. In some ways I feel battle-weary. I don’t feel a particular desire to shout from the rooftops tomorrow or anything. I don’t think that would help me very much.

But I love the expressions of hope that have been shown this week, hope for the future, hope for a better world for children and families. The idea that people don’t have to wait years or decades to meet someone who looks like them. So… I’m embracing the surge of hope I feel in the Moebius community right now. Hoping that will propel people to great things this year…

The invisible disability

Talking about invisible disabilities and Moebius syndrome sounds kind of weird at first, as we talk so much about the visible disability part of it… but on an everyday basis, I almost think the invisible disabilities I have due to Moebius are more problematic.

Today I went to a crowded Trader Joe’s… and didn’t hit anyone with my cart. And that, sadly enough, is an accomplishment with my vision! Getting on a crowded bus… I rush for the first seat because I cannot stay balanced. I have chronic foot and leg pain. Sometimes I use a disability placard when I need to. But looking at me… you wouldn’t see those things. You may see someone with a unique-looking face… but nothing else is obvious.

And for some reason, I am uncomfortable asserting myself in situations that involve the invisible parts of Moebius syndrome. I worry about taking an accessible spot. I don’t ask for a seat on the bus when they are full. I struggle with how to balance my needs as a person with several impairments that aren’t particularly visible at first glance.

Maybe someday I’ll come up with a snappy way to assert myself. But until then, I muddle along and try my best to get by.

Aloneness

Today in a conversation, one of my friends who is the mom of a child with Moebius syndrome pointed out that if it wasn’t for being friends with me, her son would go two years between conferences not seeing anyone with Moebius with any sort of regularity. For some reason, that comment struck me today. Maybe because I realize how important others with Moebius have been to me throughout my life, or how invaluable real, actual meeting people is. I’m a techie, but give me a real, sit-down conversation and it can be life-changing. So I’m happy that just by being myself and living my life the best way I know how, I can be helpful to families trying to find their way in the world with Moebius syndrome.