Author Archives: Natalie A

I participated in a lot of follow-up research this weekend. Because apparently, labs always find more stuff they want from you! I did follow-up OPT and presented on it, gave a lot more blood and spit for DNA, had yet more 3D images taken of me (a view that no one, truly, needs to ever see!), and did all kinds of odd eye movement (and, well, lack of movement) exercises that were videotaped and tracked with fancy computer programs. I also got the opportunity to talk with some of the preeminent physicians in the field for free.

I’ve been doing this for awhile, and kind of have a “why not?” attitude towards research.  I’m not exactly an exciting case, kind of run-of-the-mill actually. But it can’t hurt (well, one blood draw did!) and the more information the researchers have to work with, the better it is for everyone else who is interested in this.  Plus I’m randomly fascinated by all the fancy machines and tests they come up with (who knew there was a market in iPad vision test apps?) to try to glean more information.

Answers and information about the genetics behind Moebius syndrome won’t change anything or greatly influence my life, but as a writer interested in the sciences from a non-scientist point of view, I’m fascinated by how this is all playing out and with everyone involved and decided that it’s something that I should invest a little time at every conference in.  They are all making great advances and working collaboratively, who knows what the next round of discoveries will lead to!

I am one of the millions of people who could be denied health care based on pre-existing conditions, or face sky-high premiums in order to access it.  I’m lucky: I have access to group health insurance from multiple places.  But still, the fact that in many places I’m un-insurable weighs on me. 

It’s bad enough to lose (win?) the genetics lottery multiple times and end up with multiple rare conditions… but then to be denied health care simply because of that (and not because of ongoing medical needs, my one prescription medicine probably costs less than many people’s medicines for common ailments!) just seems pointless.  It just seems illogical to penalize people, especially young children, for things they have no control over.  And more costly in the long run.

So while I can’t say I’m educated enough about the Affordable Care Act to make any sweeping judgements about it, for all of us who worry about whether we will always be able to have access to health care while still having jobs and a savings, I’m relieved.

Someone said something about having to prove yourself because of having Moebius syndrome.  At the same time I was contemplating a post about assertiveness and having Moebius.  They kind of go hand in hand.

Sometimes I feel that life with Moebius has made me a bit of a bitch about things.  I hold my friends close, and have little tolerance for people who don’t “get” me – either the Moebius stuff or just personality-wise.  Do I come off wrong? I hope not.  I’m pretty sure my friends would say no, but people who don’t know me? I hope not.

Now, this isn’t all Moebius related, of course.  I grew up in a competitive academic environment where proving yourself academically was vital.  That was actually what saved me.  Yes, I was different and (at times) painfully anxious… but I was one of the “smart kids”.  I found my niche.  Assertiveness was the name of the game there, and then I went to a college that was all about achieving for the act itself.  No honor societies, no honor roll… no talking about grades.  It led to a sort of inner perseverance that I think rubbed off on other parts of life.

So this is all to say that I’m not sure that I feel like I need to prove myself on a daily basis in cursory interactions.  In larger things like work, of course.  But just walking down the street, going into stores… I kind of operate on the principle that I’m the customer, if you’re going to be an idiot I will take my business elsewhere.  And, for some bizarre reason, that seems to work.  Kind of the kill them with kindness principle, but kill them with assertiveness instead.

(Either that or I’m both sort of blind and delusional and don’t see that they’re looking at me like I’m nuts… :))

Maybe I should know better.  But sometimes, I don’t care.
I know many people don’t have pain issues with Moebius, but some of us do.  And unfortunately for me, some of what I like doing the most causes me pain.
So, what to do?  In theory, I guess I should limit what I do, take more breaks, pace myself better… but, I don’t want to.  I want to milk every minute of my time in my favorite places.  Which apparently means walking and walking for hours.
I almost think that I need to do this now, since I have no idea what the future holds.
So: painful feet, sore legs, and a majorly kinked neck… but vacation in one of my favorite cities was definitely worth it.

This commercial broadcast in the UK got me thinking about the way we view things.  Spearheaded by Changing Faces, it examines preconceptions and looks at how cultural stereotypes determine how we think things will turn out.  Of course most of us think the guy is bad, partly because he’s styled as a bad “monster” type persona.  It turns out to be the opposite, and presents a teaching and learning opportunity for self-evaluation and reflection on how we jump to conclusions based on appearances.

This is part of a larger campaign and petition aimed at changing how people with disfigurements, particularly facial disfigurements, are portrayed in film.  I think that’s a great goal to ultimately have, to get people in films who happen to have disfigurements instead of the disfigured, sinister archetype who always plays the villain.

I’m interested to see where that goes, and if the UK (who is a little in ahead of the US in many disability issues) makes any headway on this.  If nothing else, expanding the roles that are available to actors with disabilities would be wonderful.  I’m always excited to see an actor or actress with a disability on screen, and believe that campaigns like this will only help expand the realm of possibilities for actors who just happen to have disabilities or disfigurements.

When I was a child, waiting rooms were almost a mark of distinction.  The longer you had to wait, the better the doctor was.  The shorter you had to wait, the sicker you were.  Luckily for me, it was usually the former rather than the latter.  But I would not be surprised if, added up, I’ve spent a few weeks out of my life waiting in some doctor’s office or another.

My ophthalmologist was the worst.  You could expect to wait absurdly long at any appointment with him, mainly because he squeezed every possible appointment in.  My pulmonologist was the best, mainly because I was usually coming to him when I couldn’t breathe, which I guess is important.

Now it’s not as excruciating, with phones and iPads and many other distractions… far cry from doing my school reading in an array of waiting rooms during my childhood.  But it’s still the same drill, waiting, anticipating, sometimes worrying.  And doing it all over again all too soon.