Aware

I’m aware. I can say that.

I’m aware that I’m just not into the whole awareness thing right now.

I’m aware that there are immediate things that I just care about more now.

I’m aware that I drastically cut down my online presence and it’s done wonders for me.

I’m aware that this is perhaps avoidance but I just don’t care.

I’m aware that I am smarter about things, about trusting people, about what I share.

I’m aware that I’ve found a goal to work towards that motivates me in new and exciting ways (more about that soon).

I’m aware that people really don’t know me, don’t really understand me, are probably judging me.

I’m aware that they do not define me.

I’m aware that I control more than I think.

I’m aware that I am both defined and not defined by what has happened to me.

I’m aware of it all, soaking it in, living with it.

I’m aware.

Awareness & Pain

It’s awareness season. 

The Moebius syndrome community is all about awareness right now, talking about facial expression, smiling, every heart euphemism you can imagine.

I’m doing it too, but I’m also imploring a different kind of awareness. Awareness of how different we are, and how Moebius syndrome affects us differently.

Sometimes, maybe often times, the fact that I can’t fully smile is the least of my problems.

I woke up this morning, and it physically hurt to stand up. My legs always hurt. I’m often tired. My hamstrings are so tight (no matter how many barre classes I take) that I can’t bend my knees, I kind of fall to the ground in a super awkward collapse.

I sometimes randomly fall over, out of nowhere. 

I don’t drag my awesome service dog around for the heck of it. I have him because I usually hurt. He doesn’t alleviate the pain since I still have to actually go out and do stuff… but he helps me where I struggle.

So today I’m going to unpack my new apartment, go grocery shopping, go take a riding lesson (yes, I found the perfect sport that doesn’t require standing, walking or running!) and implore you to truly look beyond face value.

http://moebiussyndrome.org/events/moebius-syndrome-awareness-day/

it’s Asthma Awareness Month!

And I can’t resist the opportunity to share a great infographic. Seriously, Infographics make me happy.


Strangely enough, it took doctors a long time to diagnose me with asthma (well, actually, my pediatric pulmonologist didn’t really know if it is asthma or not but if it walks like a duck and quacks like a duck… so the saying goes).

On a day to day basis my issues are happily controlled by a combination of inhalers and a miracle pill that seriously improved my life so much once I started taking it! I went from missing weeks of school to only having a few issues a year. I do have a ridiculous amount of phlegm all. the. time. (so phlegmatic!)

Awareness is not Garish

This week is Facial Paralysis Awareness Week. I did what one is now “supposed to” do in the era of social media: shared the posts, changed my profile photo to the designated Twibbon, so on and so forth. 

Other organizations and people are doing things too, some of which make me vaguely uncomfortable as a person with facial pareisis (if we’re getting very technical). People are cutting half their hair, painting half their face in a strange showing of solidarity.

But they are missing the point.

Everyday life with facial paralysis isn’t over-dramatic or sometimes even obvious. People (hopefully) aren’t recoiling from the obvious. It’s the little questioning doubts, the assumptions people make, the side glances. It’s not extraordinary, but it is subtle and persistent.

So what could a person without facial paralysis do to show solidarity? Listen to us, embrace our similarities and differences. Work on efforts to improve understanding of differences.

And maybe think twice about doing over dramatic things that don’t reflect what life is truly like for some people with facial paralysis.   

 

With (Not For) #MSAD16

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So besides the awesome Northern California get-together (70 people, 15-20ish(?) with Moebius syndrome, this post/Tweet that I put out there this morning pretty much sums up how I want to reframe advocacy, awareness and acceptance in the community.

So many people posted such well-meaning things saying they were smiling “for” their loved one with Moebius. I have a slightly adverse reaction to this… I want to be a participant in this. I don’t want things done for me. So… do this with us. Smile with us, especially when our smiles are different. Embrace that difference; collaborate on things that will highlight the uniqueness of everyone and most importantly…that there are many ways to express yourself

for more information on Moebius syndrome, check out moebiussyndrome.org.

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Hay – It’s Moebius Awareness Day.

Sometimes you’re mentally pooped by doing the real life + internet awareness life + real-life awareness life… that a meaningful post just isn’t going to happen.

But horses always bring me back to my happy place. (and dogs, but that’s for tomorrow’s post!)

And for actual, legit info on Moebius syndrome not tainted by my tires silliness and ridiculous obsession with the Photofy app… see moebiussyndrome.org!

my face is my heart

September is Craniofacial Awareness/Acceptance Month. On one hand I’m of course happy: Craniofacial conditions are terribly misunderstood and largely ignored by both the medical/disability and greater society. It is, quite frankly, a weird disability to have. You are part of both worlds. You can pass sometimes, not other times. It is tricky.

Then come the tag lines that make me cringe:

Beyond the face is a heart.

I’m smiling on the inside!

…Foundation of Smile

Etc, etc.

Now beyond the obvious irony of the focus on smiles when the population I am familiar with perhaps cannot smile or smile conventionally, I am slightly weirded out by the discourse – “beyond the face”, “comes from my heart”… it puts a weird kind of dissasociation between one’s insides and one’s outsides.

I see where they are coming from, but from a disability theory point of view it’s so problematic. 

Being born with a visabile disability does not mean that one’s insides and one’s outside appearance are separate identities. My insides are irrevocably linked to my outsides, in both good and problematic ways. But they are linked. 

To me, awareness is as much for the people affected by what they are raising awareness for as for the general public – it is about owning it, putting words to experiences and feelings, about taking control of your personal narrative.

I just hope these narratives give voice to the complicated world of craniofacial conditions.

Semi-Wordless Wednesday: World Clubfoot Day

  

Today I woke up, and my feet hurt. They pretty much always ache, to some degree. I had an ever-so-helpful (not) orthopedist tell me about 10 years ago that the surgery used to correct my clubfoot was “outdated”… yeah, not much we can do about that now! Basically, instead of using casts to nudge my foot in the right direction they did something with my tendons… which left my foot and leg a bit screwed up.

For me, the constant ache and fatigue of my legs is one of the most debilitating parts of how Moebius syndrome affects me now and has the most impact on how I feel. It’s hard to be positive and enthusiastic about life when you’re in pain. It’s hard to work when it hurts to stand up, much less walk. 

I pop a few Tylenol Alleve and suck it up, that’s the only thing I know how to do.

Rare Disease Day 2015



Saturday February 28 is World Rare Disease Day. I’m always happy to support this effort – the numbers are staggering, if you think about it: one in ten people are affected by a rare disorder (if you like infographics, Global Genes Project has a few illuminating ones related to rare disorders).

Although all 7,000+ rare disorders are obviously different, the experience of living with these conditions share many commonalities – the search for a diagnosis and knowledgeable physicians, the search for information and community, and the powerful connections you get with shared experiences.

It’s important to channel the National Organization for Rare Disorders motto – “Alone we are rare. Together we are strong” because it is true – the collective power of this community is truly powerful.

Because I have a t-shirt purchasing problem (and because I really love the sentiment and meaning of this shirt), I just had to get this one from Global Genes… I truly do know and love so many people in the rare disorders community. And I try to love myself, as much as my perfectionist self can! Maybe wearing this will have it rub off a bit…

Pile O’Awareness, and of History

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A stack of t-shirts sits on my bed. They span 6 years, the entire United States, and come from a variety of experiences I have had in the Moebius syndrome and rare disease community. Some I wish I could relive, some I wish I could change my response to, some I am still not sure of. But they are all there, sitting on my bed in front of me,

These t-shirts represent communities, constructed by chance, by choice and perhaps by necessity. They are communities that sometimes I wish I could escape, but know I cannot. Communities that have shaped me and supported me and pushed me. Communities that have, most of all, taught me.

January 24 is Moebius Syndrome Awareness Day, commemorating the birth of Paul Julius Mōbius – a German physician in the 1880s who first described the syndrome. It is a time for awareness-raising, of course, but it’s also a time for reflection. About how we navigate the world with a rare disorder, about how we negotiate real-world life with the online community we have formed, about how we raise awareness in everyday life, not just one week a year.

I tend to be more quiet, and approach awareness raising in the same way – open to awareness-raising, but guarded. Probably too guarded, but that’s a post for a different day (or never). Other people are most comfortable doing it in large-scale ways. Both are needed.

All kinds of things are happening this weekend – get togethers, news stories, social media campaigns… I’m spending Saturday day working, and Saturday night undoubtedly catching up with what I’ve missed! I’m looking forward to seeing what is accomplished this year, and what will happen looking forward to next year and beyond.

My friend Kathleen Bogart just published a study about how awareness leads to understanding. And that is what ultimately I think anyone, but especially those of us living with unique medical needs, want. I don’t even care if you can’t remember what it’s called, honestly (best line ever “whatever-it-is-that-you-have-again?)… but understanding is paramount to acceptance. And we all, ultimately, yearn to be accepted. I think I, and others, are doing good work towards that goal.

So this pile of shirts represents a history, my history, with the Moebius syndrome community. It represents me navigating my unique journey. These are my choices, my desires and my mistakes. They are uniquely mine, just like all of the individual experiences living with Moebius shared on Moebius Syndrome Awareness Day.

Together, they make a visual embodiment of a layered story. My story.