Natalie A

NIH Day 0: Travel

Got up at the crack of dawn California time, just in time to see a gorgeous Bay Area sunrise on the way to the airport:

We thought we had a full flight, but then found this strangeness next to me – Cassius appreciated the extra room!

Made it through the flight and an e-book glitch that made what I thought I was going to read unavailable (ugh!), and landed at Dulles to the relief of Cassius who finally got to eat!

After feeding him we dealt with the craziness of Dulles (seriously, how far are the terminals from the baggage claim!), found our taxi and were on our way to the NIH.

We went through security, then on to the Safra Family Lodge where we are staying. Our room is so cute!

If I wasn’t so hungry I would have taken a photo of the much-needed dinner provided by the Friends of Patients at the NIH… but eating was more critical than picture-taking!

Tomorrow starts the myriad of appointments and tests…

Accessibility. Disability. Say the Word.

So between legit fangirling over Hamilton and the musical theatre category actually being included in the televised Grammys broadcast last night, this moment happened and made me happy.
What I loved as much as the moment was the reaction to it. Stevie Wonder is for better or for worse the token disabled person in music and the fact that he once again used his status as a platform for change was great.

But what was really great was that someone made this photo and put it on the main HuffPo site. Not the health site, not the disabilities site… the main site.

And I hope that we as a society are getting closer to this goal of accessibility.

Smiling Semantics

So I’m not usually one to be caught up in the semantics of it all. I mean, statistically speaking, the chances that one has a condition resulting in facial paralysis/paresis is very very low. So why is it sometimes a punch in the gut when organizations for other craniofacial conditions focus SO much on the smiling part? Like, “she may have this and that… BUT SHE STILL SMILES!!!”

So where does this leave those of us who, for various reasons, cannot? Where do we fit into this equation of things one still has even when faced with challenges? Is it really that bad (of course not).

This stream of consciousness brought to you by:

And for the record: my dog, friends & family, good coffee, NYC, theatre… make me half-smile. And that’s enough.

On the Periphery of the Super Bowl

I am an only child of a football-loving father, so I grew up passively watching. I can’t say I particularly am a fan, but I will watch it and kind of enjoy it (although I must admit, some of the rules still make absolutely no sense!) I am, however, an unabashed fan of pomp and ridiculously overhyped and over-scripted drama, so kind of love the Super Bowl.

This year the Super Bowl is in the Bay Area, which is bringing with it all kinds of (mostly exciting) craziness. For the second year in a row I decided to work during the commercials and halftime show (errr, game), but on Thursday I went and checked out Super Bowl City on the Embarcadero, one of my favorite places in San Francisco.

I fully admit that one of the main reasons I went was to get a picture of Cassius by one of those darn 50 signs. Peer pressure? Anyway, I’m glad I got a good one!

After that, I wandered through Super Bowl City (which honestly wasn’t that exciting during the middle of the day, the real fun stuff was over at the Moscone Center) to the other main reason I came… Puppy Bowl! Yep, Animal Planet and local shelters ran a continuous mini Puppy Bowl all weekend complete with announcer. It was adorable and I hope all the puppies get adopted today at 11 when they’re available!

It was adorable to watch and I loved how many people it drew!

I ran out of there before it got too crazy – by the time I left at 3:30 it was getting a bit much! But I’m glad I went for the experience and memories. And the photos, of course!

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

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.

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!

Disability & the Newbery

Review: The War that Saved My Life

Once again, a book featuring a protagonist with a disability received a Newbery Honor! This year I was especially excited both because I had reviewed the book for the Disability in Kidlit blog, and because it featured a girl with a clubfoot – one of my medical conditions!

Books were a powerful connection tool for me as a young girl with a bunch of medical stuff going on, in the pre-Internet, pre-support group world. I devoured anything remotely related to disability, hospitals, surgery, all that fun stuff. I’m so happy that these books are being written and getting traction from audiences and librarians. Need to find and read the other Schneider award winners now!

Happy New Year

This past week at work I used/taught/struggled with/enjoyed/swore at/loved the 3D printers we had on loan. I love this kind of tech stuff, but felt a bit pressured by our patrons (especially the kids!) when it just. didn’t. work. right! And since we’re dealing with donated technology that’s a bit old (yes, in tech a 2-year-old product is old!), it’s not glitch-free.
I like having something (well, more things!) at work thatI’m the go-to person for. It’s satisfying.

And my test projects, of course, somehow managed to include dogs… some more successful than others!

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I can’t formulate any resolutions that are coherent enough and practical enough to warrant a resolution. I think I’m on the right path for most things, and working through/thinking about my approach to a few things. I hope I will be clearer about what I am uncertain about in the next year (what a mouthful!)

I swear… he’s happy even if he looks stoic. (don’t worry, the hat only stayed on for the photo!)