Villainous Awareness

Young Johnny Bender, aka “Smiley,” was seen in the opening pages of We Are Robin No. 1 beating up Duke Thomas, one of the main stars of the series. The beginning of We Are Robin No. 8 (out Wednesday and illustrated by Jorge Corona) mirrors that sequence, with Smiley getting clobbered in juvie just as he’s about to be released to his disapproving father.

Smiley hasn’t gotten along with his parents since the plastic surgery to fix his Moebius syndrome gave him his Joker-like perma-grin, and the new issue shows just how devoted he is to Gotham’s Clown Prince of Crime and begins a story arc where he amasses a group of like-minded followers. – Brian Truitt, USA Today

This greeted me this morning on Facebook in a review of We Are Robin No. 8… and made me go huh. Also made me sigh, that this is the kind of representation Moebius syndrome receives. It’s the kind that organizations such as Changing Faces in the UK works to combat. 

But it also kind of made me go “that’s kind of cool – maybe someone will learn something!” – not necessarily that people with Moebius or any other visable difference are destined to have psychological issues and to be evil, of course, but that things like Moebius do happen and you might just encounter someone who has a facial difference in your everyday life.

Because that’s what’s important: normalizing and accepting differences. So maybe this comic will at least get Moebius syndrome out into the public conscience a bit. Would love to get in touch with the creators and learn how this came to be and if they have a personal connection to Moebius.

When RARE cannot be “cured”

 
The  image above – of virtually all the big pharma companies – illustrates who is funding the Rare Disease Day activities I will attend after my week at NIH doing the Natural History Study for Moebius syndrome. The fact that rare and pharma are so intertwined creates interesting challenges for those of us affected by conditions that you cannot “cure”.
In med-speak, I have congenital anomalities. No pharmaceutical agent will make my nerves work right. Therefore, I am terribly uninteresting to most pharma companies. Not saying that I don’t rely on meds to keep me breathing and functioning, because I do… but there is no hope for a breakthrough cure that can be splashed over mainstream media and lauded by the lay community.

Answers to the causes behind Moebius syndrome have been slow to come, and when they do (I hope they do!) we don’t know what we’ll be able to “do” with that information. Maybe stem cells. Maybe something that has yet to be invented.

I should be thankful there isn’t a necessary rush to develop treatments, but when I hear of people in the Moebius community facing serious respiratory problems that can be fatal…a little part of me wishes we could find a big pharma company to take us on as their pet project and develop something amazing.

But first we need to know WHY.

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!

Mailing my spit

  So this is what making saliva samples to some of the preeminent Moebius syndrome researchers in the country looks like! They are actually going to sequence the entire genomes of both me and my parents, which is pretty cool!

They gave me the option to get information on everything – even what’s totally unrelated to Moebius – and I said yes. Mainly because more information is better in general, and I’m interested with some of the other autoimmune things I have going on… who knows what’s happening with my genes.

Excited to send this off and see what information it yields.

Conference journeys

 
Last weekend, I attended a planning meeting for the 12th Moebius Syndrome Foundation Conference. As always, it’s lots of work with big rewards at the end… but can I reiterate, lots of work. It’s familiar work, though. I know the rhythms, the questions, the work I have to do. It is a long hallway with crazy purple carpet, but I know (mostly) where it will lead me.

I guess that is what I am both most looking forward to – and a bit nervous about – at my first time at MedX this fall. I’m excited, but that is tempered by the fact that I feel a tad bit inadequately prepared for this. 

Yes, I love social media and using social media to connect with others within the Moebius syndrome community and the rare disorders community… I’m just hoping that’s enough to make me not feel completely like a fish out of water! At least I hope so!

Channeling Pride

I ended up in San Francisco yesterday for the first night of the American Library Association Annual Conference, listening to everyone buzzing about the SCOTUS decision and their plans for the weekend. I think the concept of pride as a movement is amazing, and a reminder to channel my own disability pride. I mean, I’m active – sometimes too active! – in the Moebius syndrome and Canine Companions community, but does that mean I actually have pride? Do I wear it proudly like a huge splashy rainbow? I don’t know. Sometimes I think I don’t, then sometimes I think I shouldn’t have to then sometimes I think I am failing everyone (lord knows who ‘everyone’ is!) for not being prideful or active enough. That is the paradox of being from a minority group that is diverse and doesn’t have the cultural cohesiveness of other minority groups. I go days without encountering someone with a (visible) disability, months or years without encountering someone with my rare condition. I get complacent. I sometimes, honestly, don’t care anymore. Then I see something – the Hearing Dog graduation I watched on my phone before the opening session yesterday, a new family discovering the online Moebius syndrome community, and am reminded that I do actually have a lot of pride. The rare disorder community and the service dog community are pretty darn incredible. I need to step back, and to have more pride in these groups… and in myself.

What I learned at Starbucks today

  

Or rather, what I reminded myself of.

I walk up to the Starbucks ordering counter, give the barista my order for a Venti Mocha Frappuccino Light with my free Starbucks drink (Yay! Because their Frappuccinos are rather overpriced), she asks for my name, I give it to her, she repeats back to me. All good.

Go to the other end of the counter, and wait for my drink. After way too long of a wait a different barista comes up with my drink…

“Valerie?”

Instantly I am angry… at myself for not speaking clearly enough, at the barista for not understanding… all the fun irrational thoughts that come out of life with a speech impairment.

But however annoyed I am I also really need my coffee after my nearly 3-mile walk. I grab the Frappuccino and step outside. Then I read the name on the cup…

Natalie

So all that angst was really not necessary. Barista 2 just couldn’t read Barista 1’s handwriting. I was clear enough.

I am a perfectionist and hard on myself, especially when I know I can do “better”… but I’m learning to let go of what I cannot change.

And sometimes that means grabbing the drink that is on the counter if it’s the right one, no matter what name is called. You may be pleasantly surprised.

A fine fine line in humor

If by ‘loser,’ you’re referring to a man who’s greeted eight times a week by 1,000 people that stand as one, applauding until their hands are raw, cheering until their voices are spent, whispering, ‘He’s so much better looking in person,’ and laughing until their faces are contorted in an anguished mask that can best be described as a sort of Bell’s palsy.” – Larry David, presenting at the 2015 Tony Awards

Sigh. It happened again last night, that fine fine line between humor and being an asshole making jokes about people with serious medical conditions.
I have a sense of humor, sometimes a black sense of humor. I’m not immune to making fun of myself or my situation… but in no way is talking in terms of “anguished masks” funny or frankly acceptable.

But people laughed. And because people laughed, the roughly six million people watching at home think it’s okay. And it’s not.

Selfishly I am annoyed because theater is my happy escapist place (even if my favorite playwrights and lyricists write about heavy stuff) and I don’t like real life crap like this to intrude.

We’re slowly getting there with being less accepting of this kind of stuff, but it’s not happening fast enough… especially when it hits too close to home.

(and yes: title is an Avenue Q reference, proving that I do have a sense of humor!)

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.