Author Archives: Natalie A

Choices

I was reading about a BBC show called Children’s Craniofacial Surgery featuring a boy with Moebius syndrome (which, unfortunately, we don’t get in the US – I just e-mailed BBC America to ask if it could be made available to the US streaming) and I really liked how they worded this:

“Harry is older, and has Moebius syndrome, giving him paralysis of the facial muscles. However cheerful he feels, he can’t smile. His parents left the choice of surgery up to him, and now he’s elected to have a major operation called ‘smile surgery’ to enable him to smile for the first time.”

I like that his parents embraced the idea of having surgery available, but up to him.  It’s a hard thing to do, I presume, when the recommended age for surgery is so young… I’m sure many four-year-olds grasp the implications, but I’m afraid some do not.  And coming from the point of view of someone who was very traumatized by surgeries as a young child, I am hesitant to say that this is the best course of action to take.  It just seems wiser to wait until the child is mature enough to evaluate everything.  I don’t know if this is the popular opinion in the Moebius community or not, but it is what it is.  I’m definitely not by any means anti-surgery, I’m just in favor of waiting a bit and having the person with Moebius be able to evaluate for themselves the pros and risks of it (in most cases, of course there are exceptions to the rule).

Keeping active and challenging yourself!

So, spring weather is finally here… and I’m thinking about exercise and keeping active even when you have mobility impairments.  I can’t run for the life of me (seriously, not coordinated to do it without falling on my face! Plus it hurts my knee affected by club foot and my feet.  I walk a lot and someday would like to swim a bit.  I’m a big fan of my Wii Fit, and other random games on it that actually give you a pretty decent workout (any dance program, I have a ridiculous one where you dance to hysterical choreography from Broadway musicals…)  But I do most of my exercise by horseback riding… definitely meets the criteria for low impact activities that are fun and challenging! My riding blog is here: http://delvingintodressage.blogspot.com/.

So this week my instructor had a novel idea: we should work on mounting from the fence.  Because there’s no way I’m mounting Indy, the horse I ride, from the ground! He’s way too tall and I’m way too inflexible.  I was a bit doubtful.  My balance sucks and I was never any good at anything that requires both balance and coordination at the same time!  But I trust this horse and my instructor implicitly, and you know what? We were successful!  Repeated it yesterday without a hitch and it feels so good to have something else in my horsey bag of tricks.

So what does this have to do with Moebius? I think the idea of challenging yourself (or challenging your children) to do something that they don’t know if they’ll be successful at or not is great every so often in the right environment.

And just because he’s adorable (even when outfitted in terribly un-manly pink polo wraps and photographed from a rather unflattering angle), here’s Indy:

The Moebius Community

So this is random, but I was just thinking today how interesting it is that, since I have Moebius, I meet so many different people from all over the world who I would have probably never met before had we both not been affected in some way by Moebius.  Both families and medical professionals.  We’re all fairly insular in our lives… have friends from roughly the same backgrounds with the same interests and passions.  But being brought together because of, essentially, chance with so many different people has ultimately been an incredible asset and part of my life.  I can’t imagine my life without the various friends I’ve met because of Moebius, and I think that’s a great thing.  I always feel a bit forced trying to put a “positive” spin on medical stuff, but this is a definite positive and a life-changing force.

Jeans for Genes on 2/28, Conferences…

Rare Disease Day USA
Alone we are Rare. Together we are Strong.


 Next Monday, February 28, is Rare Disease Day.  I think it’s a great project to be involved with because raising awareness of rare disorders is so important and by working together with multiple organizations we can work towards increased recognition and awareness of the many rare disorders (some even rarer than Moebius!) that NORD serves.

A project of Rare Disease Day is Wear That You Care/Jeans for Genes… basically wearing jeans in support of more awareness of genes!  Something great that you can do even if you can’t attend another event or fundraiser.  There is also a video project collecting stories of people with rare disorders and their families.

Speaking of awareness and education, I’ll be attending the Genetic Diseases of Children Conference on a scholarship awarded to families and people effected by genetic disorders.  There are a bunch of interesting panels and presentations.  Rick Guidotti, who will be the 2012 Closing Speaker for the Moebius Syndrome Conference, will be presenting.  I’ll definitely post anything I learn that I think would be valuable to the Moebius syndrome community.

Suggested Moebius-related viewing (to keep up the title trend, apparently)

It’s hard to find good, disability-related films.  It’s much easier to fall into melodrama and cliche than to really tackle the issues of disability, I think.  Not to mention the fact that there hasn’t actually been a full-length documentary made about Moebius syndrome (which is actually interesting, with all the other condition-specific documentaries that pop up on TLC!)

But… here are a few about disabilities in general that are worth seeing:

Autism: The Musical
This is just an amazing documentary, and a great program they have developed. So much of it is about differences in general, and the importance of the arts – both things that are very important to me.

Sound and Fury
Very interesting perspective about elective procedures, the thought process that goes into them, and the effect they have on a specific disability community.

Children of a Lesser God
Just putting this here because I think it’s important to recognize actors and actresses with differences who are out there and making a difference.

And for current movies, definitely see The King’s Speech.  Loved actually seeing speech therapy sessions on screen.  It has a really interesting back story – the screenwriter who wrote it stuttered as a child and went through some of the same speech therapy techniques in England that are depicted in the movie.  Some of their premieres have been benefits for speech therapy organizations, which I thought was great.

And for television, I can’t help but pointing out Glee’s depiction of characters with Down syndrome.  The scenes with Sue and her sister and Becky the cheerleader are some of my favorites.  However problematic the whole able-bodied actor in a chair issue is, I personally love the fact that they do embrace actresses with disabilities in these roles.

Come join us, we don’t bite (I promise!)

So every so often I read a newspaper article or get a Google alert about someone with Moebius syndrome who sounds really interesting or has a fascinating life story that they’ve shared with the paper, who I haven’t heard of before and who isn’t involved with any Moebius groups.  And part of me always wants to flag them down somehow and convince them that getting involved isn’t too scary or overwhelming, or that just getting together with people who share experiences is worthwhile enough reason to attend the gatherings.  There’s somewhat of a perception that once you’re “successful” you don’t “need” support groups… which is true to a point, but as an adult the social connections are for me the most valuable part of being part of this community.  So, I always refrain from contacting people because it’s really a personal decision, but it kind of saddens me sometimes that there are people who I would like to get to know who don’t want to be involved.  I know it’s a personal decision, but as someone who can’t imagine not wanting to be involved if I had the opportunity presented to me… I find it interesting.

Fiction and Disability

Maybe we can’t be okay
But maybe we’re tough and we’ll try anyway – Diana, Next to Normal

This came up in my iTunes today and it made me think about this show and art reflecting disability and medical conditions in general.  There isn’t that much out there, and it seems hard to find fictional stories focusing on medical conditions or disabilities that don’t veer into the sensationalistic.

When I was in middle school, I somehow hat an insatiable need to read about anything medical or something I could identify with.  In addition to reading some more literary books, I literally devoured all the Lurlene McDaniel books I could get my hands on in quick succession.  I don’t know if they made me feel better about my condition or just expressed things I didn’t yet have the vocabulary for, but I definitely needed them in some way.

I’ve found some excellent books in the last few years that are much higher quality, but fictional accounts of disability/medical conditions are still hard to find.  I think that’s why Next to Normal speaks to me so strongly, some of the lines are so salient for me even though the experiences portrayed are so different.  This scene, where Diana finally kind of comes to terms with the effect her life has had on both her and her family rings so true for me.  And really, we have no other choice but to go on and try again.

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And if you haven’t heard of or seen Next to Normal, I strongly encourage anyone (teenagers or older, it’s definitely not for kids) to see it.  I see a lot of theatre, and it’s one of my favorite shows by far and one of the most powerful theatrical experiences I’ve had.  It closes on Broadway January 16, but it’s on tour now all over the US and in Toronto: http://www.nexttonormal.com/tour_tickets.

Knowledge is power

So, one of what I think is one of the benefits of being born with a medical condition is that kind of by default I know a lot of stuff that not many other people have cared about or needed to know.  I know a heck of a lot about cranial nerves and what they do (and since most people look at you like you’re from outer space when you mention cranial nerves, that’s a big one!), a bit about genetics, lots about speech and occupational therapy, and miscellaneous things about other conditions and medical issues that I don’t myself face but that I know from my involvement with the Moebius community.  And I like having this information.  I think it makes me more self-aware and a better advocate for my own medical needs.  Some people may think that this extra information we have had to learn kind of by default is a negative consequence of being born with Moebius syndrome, but I think the opposite.

World Rare Disease Day 2011 2/28

NORD has launched an updated website for Rare Disease Day USA, 2/28/11.  Interesting stuff, and great to be involved with.  Although it often seems like no one knows anything about Moebius, it’s important to keep the perspective that there are thousands of other, similar conditions that are equally (if not more) rare.  It’s wonderful that organizations such as NORD allow different, smaller organizations to work together to try to work on more large-scale change and advocacy.