Natalie A

Just doing it

In my professional and personal lives, I spend a lot of time thinking about things, analyzing the best way to approach something, and carefully thinking it through. It’s partly just my personality, but also a product of my wonderfully over-analytic background.

I like living this way, mostly. I am not by nature impulsive or rash. Sometimes, though, you just have to suck it (whatever that it might be) and just go and do whatever it is.

Yesterday I decided that my legs were going to hurt whether or not I stayed home or went out on a walk after work, plus the dog needed his walk. Went our usual way only to find that the beginning of their tulip festival planting had started to bloom.

Of course I then had to capture the moment (poor dog is probably tired of having his photo taken by now!) but I’m glad I did. It’s another reminder that sometimes, maybe most times, just doing it is worthwhile.

One of these da…

One of these days, and it won’t be long,
he’ll know more about me
Than he should
All my dreams will be understood
No surprise
Nothing more to learn from the look in my eyes…
– Heaven Help My Heart, Chess

Pausing your regularly scheduled blogging for a blogger crisis-of-conscience moment.

Right now, I’m feeling like a spectacularly crappy blogger. Truth be told, I’m not thinking any profound (or, for that matter, not profound) thoughts. Life is, as always, wonderful and tough and rewarding and trying… but that’s how it should be.

Does anyone who doesn’t know me, really know me, need to know? Do they want to know? I struggle with my natural tendency to be private and kind of shy with my desire to write. Sometimes these meld together well, sometimes not.

I’m wary of letting people who don’t really know me in on my deepest, toughest thoughts. And then at the same time, I’m also spectacularly bad about blogging about happy stuff. Never occurs to me. So right now my blog is occupying some mental in-between space, where I think about things… but don’t delve too deep, don’t reach beyond where it is safe.

So, I guess what I’m trying to say is that I am trying. Trying to think more about how I want this writing project to look. What it will eventually turn in to. And this process is indeed trying, in all senses of the word.

It’s strange how life turns out sometimes… I now walk my dog past my old speech therapy office nearly every day. It’s still the same practice, which is oddly nice to see. And weirdly enough, I pretty much only have good memories of speech therapy there.

I was a pretty talkative kid, so I don’t think I minded that aspect of it (now taping myself and calling random businesses on the phone, not so much! Although now I don’t mind phone calls, so maybe it worked!). I had a few really great therapists, so I was lucky.

I always had a lot to say, so I think I appreciated working so that people could understand me. Up until middle school speech therapy was just part of my weekly routine, nothing more, nothing less. I was lucky in terms of how Moebius effected me speech-wise, in that I wasn’t delayed at all, and I need to remember to be thankful for that!

(internal) vampires

The last vampire is the mother of all vampires and that is the vampire of despair.
It’ll wake you up at 4am to say things like:
(Who do you think you’re kidding?
You look like a fool.
No matter how hard you try, you’ll never be good enough)
Why is it that if some dude walked up to me on the subway platform
and said these things, I’d think he was a mentally ill asshole,
but if the vampire inside my head says it,
It’s the voice of reason. – Susan, [title of show]

Tonight’s task: killing vampires.

I need to refine my technique, I think.

What, exactly, does one do to kill a vampire?

I am not talking Twilight vampires, I am speaking of these little internal voice-vampires.

Right now, a whole lot of stuff is going really, really well. Some things I can talk about (like how truly obsessed with my dog I am, the fun new horse I’m riding, the great barre class I’ve started torturing myself with), some is pending and I can’t yet reveal.

But still internal evil little vampire persists, telling me that I’m not good enough. That no one else really gives a damn what I think. That it’s a waste and I shouldn’t bother.

This of course is, in [tos]-speak, is the vampire of despair. And, I admit, I love their solution to it:

Oh baby, you must escape and grab it by the nape of its neck, by the trachea
fuckin’ break it, go on drive a stake in,
Yeah there’s no mistaking, now you’re shake and bakin’- Susan, [title of show]

So what exactly does that mean? For me, it’s figuratively driving a stake into my fears. Taking a big gulp and going forward. Breaking that which binds me to past events and fears.

Will I ever get to the |shake and bakin’” part, to be completely free of my personal vampires? Knowing me, probably not. But I can try my best to silence their voices and lessen their hold on me. So I will.

(and something tells me I have probably written about this song before. It just seemed appropriate again)

“alone we are rare, together we are strong”

Rare Disease Day is February 28th! It’s a valuable day because the strength of the cumulative rare disease community is huge,

I felt the strength and resilience of people facing all different medical conditions when I was at CCI, and it was a powerful, transformative experience. It reaffirmed for me that I need that community in my life in some way, probably more through CCI than through other groups at this time for some tough personal reasons. But I realized I do indeed need it to center myself, to reaffirm my place in this complicated world.

The motto of the National Organization for Rare Disorders is “alone we are rare, together we are strong” and I believe it’s more relevant now than ever before. Events for Rare Disease Day range from just wearing jeans or a jeans-colored ribbon to show support to large Capitol Hill lobbying events.

For more information on Rare Disease Day and how to get involved, see:
http://rarediseaseday.us/

Homepage

(and I thought this photo was a perfect background for the message, as who cares more about you – in their own unique way – than a really adorable dog?)

…Don’t forget to smile

“For people who suffer from Moebius syndrome, which is the inability to move facial muscles, they often explain how they have to tell themselves to be happy or sad…The happiness or sadness doesn’t occur naturally to them. They are intellectualizing their feelings.” – Dr. Eric Finzi

I came across this gem today, and I guess it would be irresponsible of me not to delve deeper into it. I never understood this research finding (that has been handily refuted by my friend Kathleen Bogart, a psychologist who happens to have Moebius syndrome). If anything, I always almost wonder if I’m over-emotional in response to having limited facial expression. I am passionate, strong-willed and often too hard on myself. Definitely no one has ever accused me of lacking emotion in any way, shape or form! Do I intellectualize my feelings? Sure, but then again I pretty much intellectualize everything! I honestly think that has more to do with my upbringing and schooling than the fact that I have limited facial expressions.

And, for what it’s worth, people tell me I’m very expressive even with partial pareisis. So I think we just intrinsically learn how to be expressive in other ways, and I don’t believe that’s a negative or problematic way to live.

Meet my new addition! (and some thoughts)

Meet Cassius! He is a 2-year old Lab/Golden cross, super-mellow and loves to please. His favorite activities (in no particular order) are eating, sleeping, and cuddling. That sounds like a personal ad gone wrong. Anyway, he came home on Friday from our 2-week stay at doggie boot camp (aka Canine Companions for Independence, in Santa Rosa, CA).

I’ve been struggling with how to write a blog post about this, in the context of this blog. More so because I struggle with how to explain my individual experience with my individual manifestation of Moebius syndrome.

I don’t talk about a lot of things to most people. There’s no use in chronicling pain, illness and injury just to get sympathy votes. But then that creates a weird, unspoken cycle. I wonder, do other people not talk about it? Or am I the only one?

I never remember my legs not hurting, not aching after a normal day walking around. I can’t remember the specific moment when going down the stairs started to become a rather wobbly, questionablly-safe affair. It just is what it is, and I grew accustomed to popping the Alleve and going on with my life.

Enter a program with absurdly gorgeous, highly-trained assistance dogs trained to help pick up things from the floor, to hand them to me, to do all kinds of other amazing things… and to look absolutely cute while doing them (which is, of course, a high priority).

Somehow, though, I’m not sure how to contextualize this within the greater Moebius syndrome community, where I sometimes feel like one of the few with more neurological impairments. It’s weird, it’s easier to explain to a room of virtual strangers that I have a neurological disorder that causes difficulties in vision, coordination, balance and endurance to attempt to explain to people familiar with Moebius that the craniofacial pareisis is the least of my daily concerns! I know that’s not true for everyone with Moebius, though.

Maybe I’m too private about my individual experiences, but even I would get a little bored with a never-ending chronicle of what-hurts-now! So it goes unspoken. I’m not sure if anyone really wants to know.

But anyway, my hopes for my life with Cassius include: helping me with things that are hard for me, reducing chronic pain, and enabling me to find a bunch of volunteer opportunities with my local CCI chapter. I’ve been feeling a void in my in-person volunteering ever since I moved and stopped volunteering at a local therapeutic riding barn, and this should be perfect!

So for now, I’m going to continue to live my life, how I want to (and with a little help from someone with four legs and a wagging tail).

The Phlegm Chronicles

A PSA: avoiding pulmonology appointments can lead to shortness of breath, wheeziness and some seriously weird/bad lab numbers.

It’s hard, though. You get complacent. You get used to coughing fits, to the way your chest feels when it’s tight. It’s just how life is.

But a few weeks ago I had a turning point, I was annoyed with the fact that I was wheezing after walking up a tiny, tiny hill.

Luckily I have a very good (and attractive, in a strangely older/goofy kind of way) pulmonologist. He’s only the second pulmonologist I’ve ever had, actually (I love the stability of my specialists!) So I booked an appointment and we came up with a plan.

Unfortunately for me, that plan involved coughing into vials. Having dealt with a plethora of medical tests and procedures for as long as I can remember, I was more worried about the logistics of having a coughing attack while I was in a place to cough into the vial…

Not sure if this was a good thing or not, but I quickly had a coughing attack and got my vials all set up and delivered. Next I waited.

Thanks to the Internet, I didn’t have to wait long! Rather amusingly, I was sent periodic updates throughout the day with new results from my samples. Of course, these results were in no sort of context and meant nothing without explanation!

Late today I got a message with an explanation from my doctor: my asthma symptoms are back. Apparently my white blood cell count was 49%. It should be 1 to 3%! Oops!

So I’m now going back on the inhaled steroids that I was happy to stop. Sigh. But breathing is good. And necessary.

So those are The Phlegm Chronicles for the week.

Some pretty amazing Moebius-related craftiness

I am pretty artsy and craftsy, if I do say so myself. I’m a big fan of sewing/knitting/anything in that realm. I was that kid at camp who would make 20+ lanyards in an 8-week period.

So given that, I was excited when “Weekly Challenge #103: “String Theory v.XXII – Moebius Syndrome Awareness“ popped up in my Google Alerts this week, right after Moebius Syndrome Awareness Day.

The blogger’s challenge was to create something incorporating the Moebius Syndrome Foundation‘s symbol.

She received some very creative and inspired designs, here are a few of my favorites:

http://leeanniszentangleiing.weebly.com/uploads/3/9/7/5/3975698/5270043.jpg?348

http://katydidsworld.files.wordpress.com/2013/01/img_2941.jpg?w=298&h=300

I just thought this was too creative not to share! Makes me inspired to make a scarf or something…

#MSAD #Inspiration

I feel somewhat obligated to post something today, it being Moebius Syndrome Awareness Day and all, but I am strangely lost for words right now. I can’t quite articulate anything coherent enough about what I’m thinking about (well, the part of the many things I’m thinking about that have anything to do with Moebius syndrome, that is). I’ve tried all day, but I’m afraid I have no great insights or thoughts today.

A singer I follow on Twitter (yeah, doesn’t that sound awkward?) has a quote on their profile that “We sing because we can’t speak anymore.” Fiction and poetry and song lyrics often speak to me, or say what I would like to say, so much more strongly and eloquently than I ever could. So here are a few lyrics that inspire me and that describe different parts of my individual experience with Moebius syndrome.