Category Archives: Moebius Syndrome

“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?!

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!

#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.

Dolls with Differences

I’ve been thinking a lot about the importance of play and toys lately, probably due to the Conference and watching all the children play! Saw this posted from the American Girl Company, and absolutely loved it! Amazing that children with differences can now play with toys that represent some of their experiences.  They also have a doll without hair for kids with cancer and alopecia – I love that manufacturers are paying attention to customer requests and adding on different options for kids with medical issues.  Although I never wore a hearing aid, I would have probably been so excited for this.

As a child (and especially an only child!) I played constantly – and many of my doctor’s office visits, surgeries and therapies inevitably made it into my play. Playmobil hospitals and American Girl dolls in hospital gowns were highlights, but I sure would have loved this, too.

We probably won’t get a customized doll with Moebius syndrome unless we somehow network with a very charity-minded doll company to create a mold (which would be utterly amazing!) but these little things can go a long way in helping children play through some of their problems and questions.  I’m excited that companies are choosing to forgo profitability and really think about how much of an impact having a similar doll to play with can make!

And for craniofacial-related toys, the Cleft Palate Foundation has adorable bears with cleft lip repairs, and the Moebius Syndrome Foundation has bears with an “I’m Smiling on the Inside!” t-shirt.

An anthropologist’s take on Moebius

Reading the (comparatively) vast amount of press surrounding the Conference, I feel the need to call everyone’s attention to a wonderful post-Conference post by Susannah Fox, from the Pew Internet & American Life Project, who specializes in health and the internet. 

Her post, about Kathleen Bogart’s session and the reactions it inspired, where people thought deeply about the social and emotional impact of having a facial difference, was a welcome relief from the more traditional media portrayal this weekend – the “suffering” highlighted in the CBS Philadelphia article, or the Philadelphia Inquirer’s retracted statement that surgery can “cure” Moebius made me thankful for her anthropological take on the event.

Because so much of the conference is scientific and medically-driven, focused on research and tests and evaluations and therapy… it’s useful to step back and look at the big picture, which I think this post did.  Because no matter what research is going on, what medical procedures people are or are not having, it’s about people and relationships and a life far removed from the doctor’s office.

Autism awareness and Bully: in the news today

Yet more awareness days! (Why are they all in the spring?!) Autism Spectrum Disorders are important to know about and especially relevant within the Moebius syndrome community, where ASDs seem to be a bit more prevalent.  Really interesting research is being done regarding this and hopefully we’ll know more answers soon about the connection between Moebius and ASDs.

Sometimes I wonder if it’s over-diagnosed in the Moebius community, where lots of young children have sensory issues and expressive communication issues and social issues purely as a result of Moebius itself, but don’t have Autism.  But regardless, the rates are higher and more awareness and research is wonderful.

And on another note: Bully, a documentary chronicling “a year in the life of America’s bullying crisis” is opening soon.  It’s important, especially for families of children who are different in any way.

Having said that, I want to say that having Moebius syndrome does not automatically equate to being bullied.  While I did not enjoy my middle and high school experience at all, I have to say I was never bullied.  At all.  I went to a school district that was hyper-achievement oriented, and I was a “smart kid”.  I found my niche early on, and was respected for that.  Granted that pressure led to all kinds of other issues (perfectionism + pressure cooker atmosphere = not good!) but I never felt unsafe or targeted.  Miserable, yes.  But never particularly bullied.

I just wanted to put it out there, not to brag or discount anyone’s experiences, just sharing what I experienced.