Natalie A

Review: Falling

Falling is an apt metaphor for life with challenges of many types. It is also the name of a new play, being presented Off-Broadway and regionally, about a family.

It presents the unique challenges of being a family affected with a condition such as severe autism, and raises powerful questions and doubts that need to be discussed.

For me, art is so incredibly powerful because we can explore so much with it. Falling made me squirm. It made me sigh with relief, then gasp. It made me THINK.

That is what great art is. It asks tough questions that are uncomfortable to answer. It makes you doubt yourself and what you think you would do. It makes you cry.

Falling is a powerful and much-needed piece of theater. I highly recommend it for mature audiences interested in family and disability issues.

Spirit Day

Posting this because it’s important to post, and may resonate strongly with some of you.

I love the concept of it: not anti anything, but pro. Because that is what ultimately takes the power away from others and roots it in yourself.

Not just in terms of bullying, which is an issue for some but not all people with disabilities, but it’s fundamentally about self-awareness, compassion, thoughtfulness, and knowing yourself and what you yourself have the power to change.

It’s about spirit, in many ways. Not the corny, over-hyped heroism of so much of the cultural views on disability, it’s the spirit of living your own life to the best of your ability and living it with spirit.

“I’m no princess of pain…”

“So stay out of my brain / I’m no princess of pain”

– Next to Normal, Tom Kitt & Brian Yorkey

I woke up with this lyric in my head, and coincidentally… in pain. Luckily pain of the physical variety, not the mental variety of the song. Not to sound too overwrought, but I identify with the sentiment all too well.

Sometimes pain is good, it means you’re working hard, stretching, loosening muscles and ultimately helping yourself be better. Perhaps that is the lifelong horseback rider in me speaking there. I’m used to feeling the burn, and welcome it (most of the time)! I know I’m really working when I feel it – in my back muscles, in my inner thighs, hopefully not in my arms because that means I’m not riding correctly! It’s a benchmark for me of trying, of doing my best with what I have to learn and progress.

And then there’s the bad pain. The “how in the world does walking for a few hours around the shopping center make my feet scream?” pain. The pain that’s not resolved with braces or over-the-counter medicine. Only time. And yet, what do I do with this? I can’t not do anything because I might have pain afterwards. (After all, that’s boring. And I really needed to go to the mall to buy the blue chicken sweater on sale at J. Crew. Priorities, after all). So I live with it.

Maybe growing up with pain has made me a pain hypocrite?!

You know you have a chronic medical condition when…

You are ecstatic about getting health coverage!

It’s so not funny but it is actually kind of hysterical. My conglomeration of part-time jobs right now don’t give me health coverage. I have too much in savings to be eligible for any government-sponsored plans for people with pre-existing conditions.

I wanted to go back to the HMO I have had for most of my life because I trust the doctors and specialists, and know they are knowledgeable about Moebius syndrome. I could have gotten a PPO option through group coverage from my alumnae association, but really wanted the HMO.

Applied online via their long exhaustive form, which is rather confusing for someone with one medical condition that causes a bunch of others! My first run-through, I think I had “neurological impairment” listed a few times so it looked like I had multiple neurological impairments! Oops. So, figured out those things and sent it off.

Round One: got denied for BOTH neurological impairment and asthma. Which technically isn’t correct because my doctors have debated whether or not I actually have asthma or whether it’s just low muscle tone… but it’s treated like asthma, so I guess it’s the same concept to them. And of course I was denied for Moebius syndrome. Wasn’t much of a surprise.

My mom and I crafted a letter essentially saying: a) any extensive treatments for Moebius syndrome ended 20 years ago! and b) asthma completely controlled by medications. Sent that off.

And lo and behold, I was actually approved after just that short letter. Which leads me to ask a whole lot of questions about who’s reading applications and appeals! If they’d just looked through my medical files briefly (which they have, since I was a patient) they would have clearly seen my basic healthiness! Oh well, all’s well that ends basically well.

I’m relieved to have that behind me, and happy to have access to my wonderful doctors and specialists who are knowledgeable about Moebius syndrome. It was quite nerve-wracking, though!

Technology, gadgets and Moebius syndrome

I love tech stuff. I grew up always with computers in the house – having a computer programmer for a father is quite convenient in that regard – and have really embraced the way technology makes things easier for me with things that are a bit more difficult due to having Moebius.

While there’s nothing I truly need (well, except the fancy Google self-driving car!) technologically, it does make life easier sometimes.

I’m a big fan of my smartphone. Sadly enough, it’s a good thing I started traveling a lot after I got it. Maps are a great thing when you can’t see street signs! I’m lucky that my close-up vision is mostly decent, so I don’t have too much of a difficult time seeing it. I was happy, however, that my new phone is just a tiny bit larger than my previous screen.

My i Phone 3S from 2009 completely and utterly died a few weeks ago. It decided it didn’t like any cellular networks whatsoever, and was not going to cooperate. At all. Ironically enough, it was great timing as I was able to upgrade to a 5. Now I’m not totally fixated on getting the newest/greatest/etc, but the larger screen and lightness of the 5 made it more appealing to me than the 4S.

With the new phone, I get to play around with Siri! And I have to say that the software is pretty good:

I actually usually don’t have that much of an issue using automated voice-recognition systems, so I was assuming it would work for me – but it’s nice to have confirmation of that! It’s helpful for me because sometimes my vision is worse than others, and it takes me awhile to navigate through the screens to search. It’s much faster to say it, and I think the display is easier to read, too.

There are also a bunch of other accessibility features on my phone, many of which I don’t need. I did increase the font, but otherwise haven’t explored these features.

And that’s not even getting me started on how much better I think my tablet is than a laptop computer! I like desktops because you can get a massive monitor and stick your nose super-close to it (and look absolutely ridiculous doing it…) but my laptop was starting to bug me simply because I couldn’t see it. Much less carry it around. So, for an on-the-go computer-type-thing, I’m a fan.

And I simply love e-books. Big fan of the back light, ability to zoom, and the ease of propping up the tablet and reading without ending up with aching fingers from holding a heavy book. I would’ve loved that option in college and grad school!

So, those are just some of my perceptions as a technology-user with Moebius syndrome. Although I’m lucky in that I don’t need to rely on technology for anything essential, it certainly is fun to explore and use!

A feel-good story for a Friday: a ballerina with limb differences

I came across this profile piece and thought it was worth sharing. Love the fact that the girl featured has both parents and doctors who encouraged her love for dance and figured out how she could do it given that she wears prostheses. That’s amazing problem-solving on everyone’s part, and generous on the part of the hospital to realize how important this is to her.

I took ballet classes from age 3-11, and ended up quitting when I a) found horses and b) realized I would probably never be strong enough to go en pointe due to my club foot. I’ve taken a few modern classes here and there over the years, and enjoy them… but there’s still something about ballet that makes me happy.

Just thought I’d share it because it was a fun story and a great example of ingenuity and passion.

#TheStoryBehindMyScar

The scar you see on my foot, I have no memory of.
The scars you don’t see I remember.

It’s strange not having any substantial memory of the process of receiving something that leaves a mark on your body. I have a sense memory of it, I jump about a mile when someone touches that area and always have, but I have no memories of the actual surgery itself. This is probably for the best, though, since they probably wouldn’t be pleasant!

On the other hand, I have scars you can’t see. Many physical, some psychological.

Apparently, the insides of my eyes are a mess of scar tissue from prior surgeries. Who knew?

I have memories of all sorts of medical procedures, of month after month of shots, of days spent in waiting rooms and pharmacies.

In a way, these memories are more salient and more challenging than the far-away memories of my visible scar.

So what is #TheStoryBehindMyScar? I don’t know, it’s evolving. It’s the past, it’s past experiences that still influence my life. It’s that there is much more to my experiences than that scar. It’s that there are more subtle scars. It’s not the whole story.

Memories, may be beautiful and yet…

Memories,,

Like the corners of my mind

Misty water-colored memories

Of the way we were

Scattered pictures,

Of the smiles we left behind

Smiles we gave to one another

For the way we were

Can it be that it was all so simple then?

Or has time re-written every line?

If we had the chance to do it all again

Tell me, would we? could we?

Memories, may be beautiful and yet

What’s too painful to remember

We simply choose to forget

So it’s the laughter

We will remember

Whenever we remember…

The way we were…

The way we were

– The Way We Were, Marvin Hamlisch

With the passing of Marvin Hamlisch this week, I’ve been thinking about the songs he wrote and the meaning they have for me. I was able to have the extraordinary opportunity to see him conduct the New York Philharmonic with Idina Menzel a few years ago, and will always treasure that experience. I think The Way We Were is particularly meaningful for me right now.

Memories associated with having Moebius are strange. I remember things in detail thatIhave no idea why. I could describe to you in detail the layout of the old Kaiser Pediatrics building. And probably a myriad of other medical buildings, too. Yet I also must have blocked out major things, too. I am a little incredulous that my first real Moebius memories are from the 1994 conference, when I had been going to get-togethers in LA for two years prior to that. I don’t think I was traumatized or anything by them, but I truly don’t remember them! It’s odd.

Sometimes I think that, as these lyrics suggest, being able to forget is powerful. It gives you the ability to move on, to overcome obstacles. Of course I’m likely to take the other approach and obsess over things way too much.

So I aim for a balance: to learn from experiences and mistakes, but also to give myself the space to move on and distance myself from memories I don’t need to obsess about. And somehow, that seems to work…

Anything you’d like to see in this blog? Input, please!

Checking in (with who? myself?) just to apologize for my lack of inspiration. I don’t write just for the sake of writing, I need to have a direction and a purpose. And right now, quite frankly, I’m feeling purposeless and directionless… So, if anyone has something they’d like me to write about… have at it in the comments! Your input is appreciated.

And just for a bit of amazing Olympic-related video, check out South African sprinter Oscar Pistorius, a double-amputee who just made it into the semi-finals of the 400 meter sprint:

I hesitate to call everything under the sun inspirational, so I’ll just call this pretty darn amazing to watch. Best of luck to him in both the Olympics and the Paralympics this summer!

Side Show and Stories

I heard the actress Alice Ripley do a solo version of this song in concert last weekend, and while of course it’s way over-dramatic (it is a musical, after all!) some of the themes resonated for me. I’d known that Side Show was sort of a cult classic musical, but after seeing that song performed I went on a Youtube and Spotify spree and finally realized how incredibly poignant the show was – both for people who have differences, and those who feel different.

I guess that’s one thing that always fascinates me so much about art having to do with differences and disabilities: that it appeals to such a broad audience.

Because what we feel as people with differences is actually, if you think about it, so similar to what “normal” people facing normal life circumstances feel. We’re (or society) is so quick to attribute everything to differences, to unique circumstances, to life trauma. And to a certain extent, that is valid. But as I’ve grown and really started to think about it, few things in my life are absolutely defined by having been born with Moebius syndrome. Everything else is a product of chance, of bad luck, of the interactions between life forces. Was it influenced by the fact that I have Moebius? Sure. But honestly I think the interaction between everything, including Moebius, was most influential.

And I think that is what I appreciate about Side Show: it is about women who happen to be conjoined twins, but also about what they do with themselves and life choices in the face of difference. Just difference itself isn’t worthy of praise or dramatic retellings: it’s what you do with what you’re dealt that is worthy of exploration.