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.

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!

You have my blood… now what?

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!

Being uninsurable

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.

the Face Equality on Film campaign

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.

Waiting rooms

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.

March is National Autoimmune Disease Awareness Month

Before I forget, March is National Autoimmune Disease Awareness Month.  It’s important to me because, like many people with Moebius syndrome, I not only have Moebius but also have other medical issues – I had an autoimmune disease when I was younger.  Thankfully it’s been in remission for a long time… but it can always come back.  That knowledge frightens me, as neither the disorder or the treatment were painless.  It has no known cause, either.

It’s funny for those of us familiar with very rare disorders that many autoimmune disorders are in fact rare – although there are many more people with them.  But they still face many of the same issues.

I have to think the two are related somehow (or else I just hit the unlucky health jackpot!) and hope that the research being done on both conditions will shed some light and lead to answers about what exactly is going on with both conditions.  It won’t necessarily make a difference in my day-to-day life, but out of pure intellectual curiosity, I want to know…

Finding Beauty

Today I read this:
Tumblr Redefined Society vs. Beauty for Me
And it struck a cord for me.  Could’ve been me in high school (since nothing like Facebook and Tumblr existed then! E-mail lists were about as sophisticated as we got…) and I love the message it sends.

I can’t say this without sound ridiculously corny, but I do think people with disabilities or who feel different in any kind of way learn to find beauty in unexpected places and to embrace it.  It’s a powerful lesson to learn, but one that is often difficult.