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.

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.

I don’t know if the sky is heaven, but I pray anyway

“I don’t know if the sky is heaven, but I pray anyway” -I Stand, Idina Menzel

Using more obscure song lyrics as a starting off point for my random musings for the evening.  Religion and belief systems always fascinate me, and especially how this is expressed in the disability community.  I am part Jewish, raised as an agnostic.  I identify strongly with the cultural significance of my Jewish heritage, but never really felt the desire to delve deeper into the religious part.  I guess because neither of my parents were raised strongly religiously, it just didn’t get passed down.

I believe in many things.  I believe in myself.  I believe in my passions and my ability.  I believe in art of all kinds.  I believe in the healing powers of animals.  The barn is my church or temple, I find myself anew after a great ride or even a simple grooming session.  To a certain extent I believe in the power of thoughts, if only to re-frame the way you look at things.  But I have no defined belief system.

How, you might ask, does this relate to having Moebius syndrome?  Without a defined belief system, I have had to come to terms that there is no particular reason (beyond, hopefully, the genetic reason that will soon be discovered) that I ended up having Moebius.  It wasn’t fate or meant to be.  It just is.  Sometimes that seems entirely too simple for such a loaded question, but for me and for now, it will have to do.

And yes, I pray sometimes.  Not to anyone or anything in particular, just to get my thoughts out into the universe.  It helps, too.


I’ve already sort of posted about this, but… I still can’t figure out how/why meeting other kids (and adults, for that matter) with Moebius didn’t make a huge impact on me as a young child.  I was eight or nine when I first met people with Moebius and I don’t remember a thing about it!  Literally nothing.  And I was a relatively astute child, so I can’t figure out why it wasn’t memorable enough to warrant at least registering in my long-term memory.  It’s weird.  I was actually really paranoid that I was, I don’t know, suppressing some kind of trauma, so I checked with my therapist… she remembers it the same way.  My friends who came to the Moebius community later in life describe these kind of watershed experiences discovering a community, and I guess I was just lucky enough that it was kind of built-in for me since I came to the community as a child.  I think the current generations of kids with Moebius are going to even be more connected to each other, which is wonderful.

And if you haven’t seen it, there is a Moebius Friends group on Facebook that now has weekly chat sessions at 9 EST / 7 CST / 6 PST.  Come join the conversation!