Natalie A

New York State of Mind

Just got back from a few days in NYC – saw lots of great shows, went to my favorite places and a few new ones, and just enjoyed the city. Saw a few good shows – Murder Ballad, Kinky Boots, and Matilda. None were earth-shattering, but they were all a fun night out at the theatre.

New York isn’t the easiest place for someone with some mobility issues (I walk down stairs at a snail’s pace!) but it’s always worth the struggle and pain to experience everything I love about it.

Shows I Saw — My attempts to photograph the Murder Ballad theatre failed, so these are the Matilda and Kinky Boots marquees – along with a quick shot of the beautiful set design before the show.

I did eat some healthy food, too (really!)

Dog at the WTC site, carriage and police horses. Love seeing contented working animals.

Freedom Tower, Central Park from the Met rooftop, Schubert Alley.

Amazing children’s book exhibit at the NYPL

Crab is a big hit. Hopefully this one will take a bit to destroy!

Missed my dog terribly, and although he enjoyed his time at my parents’, I think he’s happy to be home! (And even happier with this new toy!)

I got sick at the end of my trip, so I’m not doing much today since I can’t exactly breathe right now. Looking forward to some relaxing dog walking when I am able to, I missed it so much! I did see a few guide and service dogs in New York, which made me happy.

Cassius and I will probably end up there next summer, after the Moebius Syndrome Conference in DC. I think I’ve been convinced to present about CCI/service dogs, just gotta find a local puppy raiser (with adorable puppy, of course) to come and be adorable with us!

On Beauty Queens & Guide Dogs

You’ve probably read about Nicole Kelly, recently crowned Miss Iowa, who happens to have a limb difference. Pretty amazing! Even more interesting, or more random, is that she isn’t the first Miss Iowa to have a limb difference! Granted in every other way possible she conforms to our cultural beauty norms, but I still have to give credit for the judges and organization for their choice.

Maybe this is just because I spent a year or two watching way too many episodes of Toddlers & Tiaras (aka, near child abuse in the name of a crown and trophy), but I have to admit I’m a little judgmental about pageants. Miss America is a bit better (they did, after all, crown a deaf winner once), and I kind of love Miss Iowa’s platform – both supporting disability awareness, and supporting VSA (an arts organization for people with disabilities).

Her talent was Defying Gravity from Wicked, which I think encompasses perfectly what she is doing in raising awareness of people with differences and disabilities.

I wish her the best of luck and hope she wins the whole darn thing!

And on a completely different note, have you seen the video of O’Neil, the Guide Dogs for the Blind dog in training, narrowly missing an out-of-control car?

I joke that my dog would be the worlds worst guide or hearing dog… the whole alertness thing is not is forte. But I think (hope!) he has enough self-preservation that he would help me out here (although it’s not part of his job description, he would like you to remember)!

Since O’Neil is in his final stages of training, one very lucky recipient will get partnered with an already-famous dog!

A Guide Dogs for the Blind yellow lab named O’Neil wears a harness at the center’s campus in San Rafael, Calif. on Tuesday, June 11, 2013. (Alan Dep/Marin Independent Journal)

Healthy journeys

So everyone everywhere happens to be posting about health, body image, reconstructive surgery… and because I am trying to take my mind off post-interview/waiting to hear stresses, I’m going to try to put some of my current thoughts into semi-coherent words right now.

I don’t remember ever not having a vexed relationship with food. I am actually rather amazed I never developed a full-blown eating disorder. I have all the hallmarks for one (over-achiever control freak, trauma, etc.) Somehow, thankfully, I always have managed to avoid one.

A therapist once pointed something out, and gave me a bit of insight into my food issues: when I was born, they couldn’t figure out how to feed me. So my first, unconscious memories of food are challenging. When I was a child, I was self-conscious about how I ate. So, another strike against me having a semi-normal relationship with food!

Given that, I try my hardest to not be too neurotic about food and eating. Luckily for me, I pretty much only can eat healthy foods (basically, fruit and veggies are the only things I can eat and guarantee not feeling bad after, depending on the day). And coffee. When in doubt, I get a latte and call it lunch. Is this healthy? Is this physical, or psychosomatic? Who knows! I figure since it’s working for me now, I will just deal with it. (I wonder if it has something to do with low muscle tone? I have never seen a GI well-versed in neuromuscular disorders, so I don’t know.

On to exercise. I have a love-hate relationship with walking – I love to do it, my legs… not so much! For me, the most challenging everyday parts of Moebius syndrome is not at all the facial pareisis – it’s my vision issues and chronic pain. I got a dog in February, and if that isn’t good enough motivation to walk, I don’t know what is! It’s hard not to enjoy a leisurely stroll when you have a happy dog beside you. He also helps take the strain and pain out of everyday life, since he’s trained to pick stuff up for me and otherwise help me. I’m also all about finding ways that I can exercise within my physical limitations. I love mat pilates and yoga, they’re great for core strength and you do at least half of it sitting down! And riding horses is of course perfect for someone who can’t walk a lot, it’s an ideal sport for me! When I have the chance, I love to swim… just need to find a pool around here without absurd dues!

But I think, like everything, living healthy with a chronic condition is all about finding your own way in the world. Nobody’s journey looks the same, whether it is navigating surgical options or learning to take care of your body.

So what does this have to do with my third (very rough) point here, reconstructive surgery? Just that we need not point fingers either direction. Every individual, family, parent is on their own journey here, and the outcomes may look very different. It’s so easy to be judgmental and critical and confrontational, but I always try to remember that their experience is very different from my own because we are all individuals. I remind myself of that constantly. I hope I succeed.

And just to end, an image that always reminds me that there are no excuses:

A bit of Positivity for the weekend

Rock Center | Fashion photog devotes life to the disabled

POSITIVE EXPOSURE, an arts, education and advocacy organization, utilizes the visual arts to celebrate the richness of human diversity and to expand and challenge conventional standards of beauty.

I am continuously in awe of what Rick Guidotti and the Positive Exposure project are able to accomplish through his vision and connections. It’s not that hard of a concept to realize – that all people are beautiful – but it gets lost in our current social and media environment.

That he is able to actualize this, and spread the message that so many of us already know, is wonderful. I always am happy when his projects get profiled, and more people are able to learn about what he is doing. I hope everyone in the disability/difference community someday has the opportunity to watch him at work. It is spectacular.

Keeping on the positive bandwagon here, had a great riding lesson on Cowboy today – we rode bareback, actually so much harder than with a saddle but a lot of fun! Cassius got to hang out at home in his crate while I rode, which I have to say he doesn’t object to at all! He was happy to see me, of course, when I returned… but he’s back in the crate for some serious napping right now. I think anything that involves a human giving you praise and a soft bed to nap on is perfect by his standards.

Getting cultured

Went to San Francisco last night to see Gloria Steinem and Letty Cottin Pogrebin at City Arts & Lectures. Really interesting and inspiring… and made me want to do something. Not sure what, but just made me remember how important and crucial so many issues still are. It’s so easy to get enveloped in your own personal (melo)drama that you lose sight of the bigger picture.

City Arts moved to this gorgeous theater near Hayes Valley (though unfortunately not close enough to squeeze in a little shopping/browsing!). It was recently restored and is absolutely beautiful.

Yesterday was also the first time I ventured onto BART with Cassius. I’ve taken BART around the Bay Area all my life and am super-comfortable with it… but adding a dog adds a completely different level of stress! Some of the CCI trainers said that some dogs may be a little unnerved by the sound, and even recommended going beforehand to let them get used to it. Somehow, that didn’t happen (oops!). So we arrived about 10 minutes before our train was supposed to arrive, found our elevator (no small feat, one of my disability studies professors in grad school said that all the elevators at BART stations are in weird places because they originally forgot to add them in the plans!), and headed up to the elevated platform.

Cassius did superbly waiting for the train, even though the freeway noise is loud and this was a totally different environment. Luckily our train arrived and we found a seat, going against commute traffic is good sometimes!

Cassius did great on the loud, bumpy BART train, especially going through the Trans Bay Tube–which somehow felt even louder than usual! I could tell he wasn’t completely happy with this arrangement but was totally obliging and calm. The train home was a bit better for him as it was carpeted, poor guy kept sliding around as he lay there in the first train without carpeting!

We finally got to San Francisco (it only takes 25 minutes to get there, but it definitely seemed like longer last night!) and eventually figured out how to get out of the platform area without taking the elevator (too stinky!)-thankfully there are stairs.

Found the theater and found our seats. We had two aisle seats, and luckily we were the last ones to arrive so it was easy to get situated:

Cassius was great during the show (about an hour and a half, with no intermission). A few times he woke up, looked up at me, I gave him a scratch behind the ears, and he went off to sleep, contented. He did let out one vocal yawn, but I’m not sure anyone else heard it. I hope.

Headed back to BART, dodging sketchy-looking street dogs along the way, and caught a train as soon as we made it onto the platform. I was relieved as there was another dog who I didn’t quite trust down by the tracks, and I was worried for Cassius’s sake about waiting near it.

The ride home was sleepy and uneventful, and I think Cassius was so relieved to arrive back home!

Not that I had any doubt that Cassius would be rock solid in the culture and public transportation realms, but I’m happy we’ve crossed this milestone together! I love the arts and San Francisco, so I foresee lots of trips like this in our future together.

Wordless Wednesday (Roadtrip edition)

We spent most of the drive to and from Oregon in various versions of this. Cassius, I think, relished the opportunity to cuddle for hours.

He did splendidly on our first long car trip and vacation, and adapted to everything. He loved meeting all my family, although he was so tired by the end of the day both days! Looking cute takes energy, you know.

We even experienced the Black Bear Diner in Redding, with everything bear motif you can imagine. Cassius was not fazed and I think from the look on his face, he’s wondering what the fuss is about!

Wordless Wednesday (actually, word-full)

This video literally made me cry.

As someone who went through 10+ years of speech therapy due to Moebius syndrome (facial pareisis), I can’t tell you how much I would have benefited from having a facility dog there! I actually didn’t mind my private speech therapy sessions, usually (I was lucky to have a few really good therapists). But doing it week after week, year after year gets a bit old.

Speech is also funny when it comes to my dog. Cassius understands me perfectly. I actually don’t get mis-understood that much anymore (I think thanks to all that TalkTools work I did), but when I do… I can’t help but think “hey, if a dog can understand me… you should be able to figure it out!”

I know, not particularly nice. But I can’t help myself since I now have a yellow, furry, slobbery guy who understands me perfectly.

An Animal-Filled Weekend

So this past weekend was fun and animal-filled.

Friday I had a great riding lesson on Cowboy, a 20-year-old Paint gelding I’ve ridden on and off for a few years. So happy I have the opportunity to ride him again, he’s in a great mental and physical place and is just content with life right now (yes, I’m anthropomorphizing). After having a dog with me all the time since February, I now unconsciously give the horses dog commands… But then again, my dog now responds to “clucks” so I guess it’s even!

Saturday I gave Cassius the opportunity to play in my aunt’s back yard, and it was great to see him have so much fun! He romped around and played a few minutes of fetch and a bunch of rolling around in the grass. Now that I saw how much he enjoyed that, I will try take him there periodically.

On Sunday, I helped with the CCI booth at Animals on Broadway, a huge dog event at a local shopping mall. It was nice to finally meet a bunch of people (and puppies!) from my chapter, as well as a few other graduates. Cassius did perfectly, I think he enjoys anything that involves meeting other well-behaved dogs and having people tell him he’s a good boy.

Next weekend I’m off to Ashland, Oregon to visit family. Strangely enough, Cassius has actually been there before (without me, obviously). I’m excited for our first non-CCI event, and to have Cassius meet the rest of my family.

Wordless Wednesday (3 months!)

Today marks 3 months since graduation! Has it only been 12 weeks? It’s hard for me to remember what in the world I did BC (Before Cassius). We’ve done lots of things, met all kinds of interesting people, and have so much more to look forward to.

These photos kind of sum up our relationship and doings thus far. Cassius loves to cuddle, enjoys going out and doing things (especially when he can attract an adoring fan club to tell him how sweet, smart and beautiful he is), and believes that toys are for both playing and sleeping with.

And, finally, that a crate is the best place ever besides a human’s lap!

End of the week endless ramblings

Wonder film adaptation in the works:

“Lionsgate has hired Jack Thorne to adapt Wonder, based on author R.J. Palacio’s best-selling debut novel. David Hoberman and Todd Lieberman are producing via their Mandeville Films banner. The novel tells the heartwarming, inspiring, and very often hysterical adventures of 10-year-old Auggie Pullman, born with a facial deformity, as he enters a mainstream school for the first time and teaches everyone around him that we are more than meets the eye. There were reports that John August was going to write the script, but that did not happen.The novel has been on the New York Times Bestseller list since its publication in February 2012. Thorne is a BAFTA-winning screenwriter and playwright, whose credits include The Scouting Book For Boys, A Long Way Down, Blood Red Road, Mortimer Green, and the UK TV shows This Is England and Skins. Lionsgate Motion Picture Group’s President of Production Erik Feig and Gillian Bohrer will oversee the project for the studio. Thorne is represented by WME and Casarotto Ramsay & Associates.” – Deadline.com

I’m tremendously interested to see how this all pans out. I think it will be great if it all comes to fruition (which in Hollywood, is not at all guaranteed). It’s funny, my first inclination when seeing it this morning was “well, they can’t fake Treacher Collins, they’re going to actually have to find an actor who has it!” Hollywood’s history of portraying characters with disabilities and medical conditions is rather pathetic. More often than not, it’s easier to have a non-disabled actor fake the disability than have an actor with a disability actually perform the role. But barring some creative makeup, I’m wondering if this will finally be the time where an actor with a facial difference will actually get hired. We can hope.

Sturge-Weber syndrome gene found:

“After 25 years of searching, we finally understand the genetic cause of Sturge-Weber syndrome. We are excited to lead and support continued research to translate this science into new treatment approaches for patients…The discovery of this genetic mutation shows what can happen when researchers, patient organizations and government agencies work together toward a common goal.” – The Sturge-Weber Foundation

Is it weird that I’m excited for them, although I actually don’t know anyone who has Sturge-Weber? I feel an excitement for them, though. Craniofacial conditions affecting relatively few people are not the kind of research projects that will generate splashy headlines and cures. Researchers really have to do it for the interest in it and a certain amount of caring about people affected. I really, really hope that day comes soon for Moebius syndrome. I had a researcher tell me a few years ago she was confident it would come, I’m holding her to that!

It’s strange, my desire to know. Irrational, really. I am reasonably sure from anecdotal evidence that I won’t pass Moebius on children, if I were to have them, I just want to know for the pure satisfaction of it. I’m a bit of a geek in many ways, and I think that plays into this. More than anything, I’m just curious. Whether it’s genetic, not genetic, environmental… it would just be satisfying to know.

Assorted miscellany:

Requisite my dog is really cute and helpful photo

Having some kind of annoying pain issues right now, but it’s hard to be miserable for long with this face looking up at you. Going to the doctor next week, it’s sad when you start hoping for referrals to specialists! Such is life with a disability, I guess.