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Awareness & Pain

It’s awareness season. 

The Moebius syndrome community is all about awareness right now, talking about facial expression, smiling, every heart euphemism you can imagine.

I’m doing it too, but I’m also imploring a different kind of awareness. Awareness of how different we are, and how Moebius syndrome affects us differently.

Sometimes, maybe often times, the fact that I can’t fully smile is the least of my problems.

I woke up this morning, and it physically hurt to stand up. My legs always hurt. I’m often tired. My hamstrings are so tight (no matter how many barre classes I take) that I can’t bend my knees, I kind of fall to the ground in a super awkward collapse.

I sometimes randomly fall over, out of nowhere. 

I don’t drag my awesome service dog around for the heck of it. I have him because I usually hurt. He doesn’t alleviate the pain since I still have to actually go out and do stuff… but he helps me where I struggle.

So today I’m going to unpack my new apartment, go grocery shopping, go take a riding lesson (yes, I found the perfect sport that doesn’t require standing, walking or running!) and implore you to truly look beyond face value.

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Bullying, Losing, and not

“When the powerful use their position to bully others, we all lose.” —Meryl Streep

I know, everyone in the interwebz is posting and retweeting this right now. But stay with me for a bit.

I’ve been thinking about how I want to be treated, and surrounding myself with people who support me. I’m working on not being taken for granted, of stating my worth and not being undervalued. Now I still kind of suck at it, but I’m trying.

So what does this have to do with bullying? It’s (luckily) not bullying in the traditional sense, but it is an assertion of my worth. Because I do think I’m working to prevent undervaluing myself and my worth. I’m struggling to find my place in the world, struggling to show that what I do is worthwhile. Struggling to prevent being bullied, because bullying takes many forms whether explicit or not.

But, just like the amazing Meryl Streep said, with conscious effort we will persevere and I will figure it all out. Someday. Sometime.

photo of my 2015 MedX ePatient pin, which I finally found in a sock drawer… it inspires me to try, to strive, to push myself

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Non-Resolutions

I’ve never done new year’s resolutions, really. Or if I’ve done them they weren’t salient enough in my memory to remember them. Guess that’s close enough to not doing them at all then.

So I’m not doing any this year. But I do have some guiding principles I’m trying to adhere to…

Work hard, play hard. Yeah, super-cliche and slightly stupid. But totally true. Work is hard and rewarding and usually fulfilling and I want to keep it that way! And figure out just where I want to aim my career aspirations and prepare myself for that with professional development and such. And then play: dogs, horses, Hamilton!SHN, NYC… more arts and theatre. And family/friends/etc. 

Respect me. Sometimes I don’t. Sometimes others (I think) take me for granted. I’m ready to change that. I’m ready to demand that people take a look at what I’m doing, and give me some damn credit for it!

Stretch myself. Comfort zones are awesome, but not entirely productive. Challenge accepted. 

Be artsy. Being artistic makes me happy. Need to make actual time for arts (and crafts! Or whatever crazy category dog ornaments fall into…)

There’s probably more, but as I said… I don’t really do resolutions.

(Pig the Palomino says happy new year!)

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What is funny, and what is not

NYT Book Review By The Book with Steve Johnson

I was set to post holiday photos today. Parties, elf hats, skating rinks… you name it, I’ve photographed it in the last few weeks.

But then last night, curled up in bed after a long workday with, being the librarian that I am, the NYT Book Review… I saw the above quote.

And it frustrated me.

WHY does this smart, educated man (and his family) cloak a childhood speech impairment as a joke? Was it because of the disconnect between his speech and his chosen activities? Was it because speech impairments are automatically associated with other difficulties?

Unlike Steve Johnson, I did not “grow out of” my speech impairment, and I live my life as an accomplished, professional member of society with that speech impairment. 

I know the consequences. Just this week, a patron at work refused to let me help him. Because of my speech. I am underestimated in casual encounters. An amazing amount of people think speech and intellect are related.

And as long as intellectual elite like Steve Johnson and the New York Times reinforce these ideas? It will not change. 

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My narrative is my own

Sometimes I feel it. The pressure of just being, of just being with Moebius syndrome. Being unique, and having that uniqueness be intricately tied to yet completely devoid from my conditions. Trying to find that within me that walks that line. I fail at it. I go full-tilt one way or another, trying to find that balance. I tweeted this earlier today as part of chat, and it is a reminder to myself.

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A Yes/No Question

I thought it would be quicker to ask on social media than to try to find the information on my HMO’s clunky website, or calling and attempting to reach someone in the department directly.

I Tweeted out a basic question:

Can I schedule an x-ray?

And the text above is the response I received, a day later after sending another email through their crazy secure messaging system.

All I asked was a yes/no question.

I know HIPPA is a good thing – privacy and all that. But I spend my work life looking for answers to questions and it frustrates me when the safeguards put in place for privacy put barriers in front of getting information.

How many patients give up, once they can’t get the needed information in a medium they use? How many never bother to take the next step?

I will call or hunt around the web tomorrow, because my feet and legs hurt too much to not do something.

But I don’t like encountering barriers to getting the information I’m seeking.

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Thanks & Peace & Love

I started this when I was at the National Institutes of Health last February, and finally finished coloring the last part in today.

It was appropriate for today. I am thankful for so much of the love that is around me and am hopeful for peace, both internally and externally.

I’m going to put this up somewhere as a blazing bright reminder to find the peace and love that is everywhere.

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