Natalie A

Finding Beauty

Today I read this:
Tumblr Redefined Society vs. Beauty for Me
And it struck a cord for me. Could’ve been me in high school (since nothing like Facebook and Tumblr existed then! E-mail lists were about as sophisticated as we got…) and I love the message it sends.

I can’t say this without sound ridiculously corny, but I do think people with disabilities or who feel different in any kind of way learn to find beauty in unexpected places and to embrace it. It’s a powerful lesson to learn, but one that is often difficult.

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.

Rare Project Blog Hop

There are so many rare disorders out there that it’s incredible, if you think about it. Individual awareness days are wonderful, but the impact of a singular day that unites people across rare disorders – 1 in 7 people have one! – that can influence change on a large-scale basis. So I think both are important ultimately, small-scale for ourselves and individual disorders, and large-scale, across-disorders to give people the sense that it is just not isolated groups, that there are actually a large number of people who are affected and can potentially be affected.

“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.

Moebius syndrome and privilege

For some reason, people tend to ask the question “How has having Moebius syndrome affected your life?”…and honestly I’m always stumped. I have no idea how I would be different, and I’m okay with that. It’s kind of like asking if you’d been born in a different era or country or something like that. But I am aware of the privileges I enjoyed by being born at the time and place I was born, and in a family with adequate resources and cultural capital to enable me to thrive. I’m keenly aware that I was very fortunate in that regard, and it kind of weighs on me sometimes. I find myself cloaking everything I say about my experiences with Moebius in all sorts of “in MY experience…” or “in MY life…” phrases because I don’t want to be presumptuous but then is that short-changing myself? I don’t know, it’s a fine line and maybe something I’ll never quite negotiate to my satisfaction.

(Medical) Ignorace Isn’t Bliss, but…

I find myself dragging my feet. There appointments that need to be made, decisions about treatment and/or surgery loom in the future. And… I simply don’t want to do it. I know it needs to be done eventually and probably the longer I wait the harder they will be… Bu
T I’m still reluctant. I know to much. I remember too much. No matter how good the ultimate outcome is, surgery basically sucks. But then I whine about the fact that I can’t see straight in front if me. Which also sucks. Sko what’s the tipping point? When does the desire outweigh the fear? I don’t know.

Because I have Moebius… I got the job

How about that for a reversal of fortune? As we approach Thanksgiving, I guess I need to take a moment to thank the people I know because of the fact that we share Moebius in our lives, with whom I’ve developed friendships with for being there for me through good times and… not so good times. I’ve done wonderful things with Moebius friends – seen first previews of what went on to be Broadway sensations, wandered the streets of San Francisco and New York… and the fact that we were brought together basically by chance is amazing if you think about it. And today, I got a job offer because someone knew I was looking, knew what I was capable of, and trusted me. So today, I thank all my friends who I’ve met through the Moebius community.

we interrupt life for a teeny, tiny…. whiny post

Today I’m in pain. And it really sucks. Thankfully it’s physical pain which is at least a bit better than emotional pain… but it is still no fun. Last week I fell down. It was my fault, I knew better than to think I could balance on one leg, but of course being me I tried to multitask… and promptly did a knee-plant on my bad leg. Figures. So it’s been hurting on and off for the last week, don’t know if walking around and doing yoga like I usually do is bad or good for it, but I can’t just sit around… so I’m (perhaps stupidly) forging ahead).

I’ve had chronic pain for as long as I can remember. I literally can’t think of a time when I didn’t have it. It’s that weird kind of pain that’s not bad enough to stop you from going about your day to day life, but bad enough so that an hour or so of walking leaves me in excruciating pain. And something like running is out of the question (well, if I was coordinated enough to do it without face planting myself on the sidewalk…)

This whole internal dialogue got me to thinking about the things I don’t know about other people’s experiences with Moebius. It’s kind of weird to walk up to a group of people, even if you know them, and announce yourself as being in pain all the time! I mean, it at once seems very trivial and unnecessary. I pretty much know that mine is due to how Moebius effects me personally, so I don’t know what good it would do to know that other people do or do not have the same effects? I don’t know! But I wonder sometimes…