Author Archives: Natalie A

Expectations

We talk a lot about expectations in the disability community – about how they are too low for people with disabilities, about how children with disabilities are unchallenged and under-estimated, about how we need to set higher expectations for everyone.

But sometimes, we underestimate ourselves. Today was one of those days for me. I was convinced my horseback riding lesson was going to be ‘meh’. I was a bit dizzy and tired and was worried I was a bit out of shape since I didn’t ride last week.

That was not the case. For the first time in awhile, I had both strength and timing to keep Piggles (yes, I ride a horse named Pig) straight, forward, and (sort of) light on the bit. We had great balanced transitions and light halts. 

Everything just came together. Now there were many factors for this (barre class on Friday? lots of walks? who knows!) but it this reminds me to continue to set both realistic and high expectations for myself. 

Sometimes I need that reminder, and this great ride when I didn’t think there would be is a good push in that direction. 

    
 

Channeling Pride

I ended up in San Francisco yesterday for the first night of the American Library Association Annual Conference, listening to everyone buzzing about the SCOTUS decision and their plans for the weekend. I think the concept of pride as a movement is amazing, and a reminder to channel my own disability pride. I mean, I’m active – sometimes too active! – in the Moebius syndrome and Canine Companions community, but does that mean I actually have pride? Do I wear it proudly like a huge splashy rainbow? I don’t know. Sometimes I think I don’t, then sometimes I think I shouldn’t have to then sometimes I think I am failing everyone (lord knows who ‘everyone’ is!) for not being prideful or active enough. That is the paradox of being from a minority group that is diverse and doesn’t have the cultural cohesiveness of other minority groups. I go days without encountering someone with a (visible) disability, months or years without encountering someone with my rare condition. I get complacent. I sometimes, honestly, don’t care anymore. Then I see something – the Hearing Dog graduation I watched on my phone before the opening session yesterday, a new family discovering the online Moebius syndrome community, and am reminded that I do actually have a lot of pride. The rare disorder community and the service dog community are pretty darn incredible. I need to step back, and to have more pride in these groups… and in myself.

What I learned at Starbucks today

  

Or rather, what I reminded myself of.

I walk up to the Starbucks ordering counter, give the barista my order for a Venti Mocha Frappuccino Light with my free Starbucks drink (Yay! Because their Frappuccinos are rather overpriced), she asks for my name, I give it to her, she repeats back to me. All good.

Go to the other end of the counter, and wait for my drink. After way too long of a wait a different barista comes up with my drink…

“Valerie?”

Instantly I am angry… at myself for not speaking clearly enough, at the barista for not understanding… all the fun irrational thoughts that come out of life with a speech impairment.

But however annoyed I am I also really need my coffee after my nearly 3-mile walk. I grab the Frappuccino and step outside. Then I read the name on the cup…

Natalie

So all that angst was really not necessary. Barista 2 just couldn’t read Barista 1’s handwriting. I was clear enough.

I am a perfectionist and hard on myself, especially when I know I can do “better”… but I’m learning to let go of what I cannot change.

And sometimes that means grabbing the drink that is on the counter if it’s the right one, no matter what name is called. You may be pleasantly surprised.

A fine fine line in humor

If by ‘loser,’ you’re referring to a man who’s greeted eight times a week by 1,000 people that stand as one, applauding until their hands are raw, cheering until their voices are spent, whispering, ‘He’s so much better looking in person,’ and laughing until their faces are contorted in an anguished mask that can best be described as a sort of Bell’s palsy.” – Larry David, presenting at the 2015 Tony Awards

Sigh. It happened again last night, that fine fine line between humor and being an asshole making jokes about people with serious medical conditions.
I have a sense of humor, sometimes a black sense of humor. I’m not immune to making fun of myself or my situation… but in no way is talking in terms of “anguished masks” funny or frankly acceptable.

But people laughed. And because people laughed, the roughly six million people watching at home think it’s okay. And it’s not.

Selfishly I am annoyed because theater is my happy escapist place (even if my favorite playwrights and lyricists write about heavy stuff) and I don’t like real life crap like this to intrude.

We’re slowly getting there with being less accepting of this kind of stuff, but it’s not happening fast enough… especially when it hits too close to home.

(and yes: title is an Avenue Q reference, proving that I do have a sense of humor!)

Semi-Wordless Wednesday: World Clubfoot Day

  

Today I woke up, and my feet hurt. They pretty much always ache, to some degree. I had an ever-so-helpful (not) orthopedist tell me about 10 years ago that the surgery used to correct my clubfoot was “outdated”… yeah, not much we can do about that now! Basically, instead of using casts to nudge my foot in the right direction they did something with my tendons… which left my foot and leg a bit screwed up.

For me, the constant ache and fatigue of my legs is one of the most debilitating parts of how Moebius syndrome affects me now and has the most impact on how I feel. It’s hard to be positive and enthusiastic about life when you’re in pain. It’s hard to work when it hurts to stand up, much less walk. 

I pop a few Tylenol Alleve and suck it up, that’s the only thing I know how to do.

Visible Differences and the #ToyLikeMe Movement

  

A few years ago, I was part of a group in charge of choosing teddy bears to sell at the Moebius Syndrome Conferences. We found that it was actually really, really difficult to find a non-smiling teddy bear! Finally we found a neutral-mouthed teddy bear that we chose. 

Makies, a British company, is among a group of advocates and manufacturers embracing the #toylikeme movement – offering customizable 3D printed dolls for sale. I’m actually not really a fan of the heads they use (those eyes are kind of creepy!) but I love the concept.

I probably would have loved more dolls with differences like mine growing up – I was always playing hospital with my Playmobils and loved it when my American Girl dolls came back from the “hospital” (aka with a new head after the hair was beyond repair!) wearing hospital gowns! I don’t think I was necessarily harmed by not having toys that looked like me, but would have loved to have this available to me. 

I like that companies are embracing both diversity and customization at the same time – with the advent of technology like 3D printers I really see things like dolls with more involved facial differences being available very soon.

I hope next time I’m seeking a non-smiling teddy bear the toy landscape will be kinder to children with visible differences.

Childhood “Favorites”: Medical Edition

 My parents are cleaning out the attic of their house, and I got an e-mail with this blast-from-the past: Mister Rogers medical books!

 

I still remember these books well. And that’s kind of sad. I think I took “working through past medical procedures” a bit too intently… we also found my favorite doctor’s kit. I donated a bunch of toys and dolls and books, but these I’m keeping.

I’m keeping them as much for what they represent than for anything else. These books represent my experiences growing up with doctors and hospitals and operations and casts and appointments followed by yet more appointments. They represent me trying to make sense of that reality, and the resources that were available to me do that. They represent the efforts of those around me to prepare and educate me about these experiences (apparently not only did I go on a “surgery tour” at the age of three, I actually asked questions of whoever was leading it. Precocious much?)

Certainly education about the impact of early childhood medical intervention has improved, and I’m sure there are more sophisticated preparation materials available to children and their parents now – but finding these books makes me grateful that at least something was available during my childhood.

This series was certainly well-read and well-loved.

SufferIng

In case you ever need to know, the sure-fire way to seriously piss me off is to tell me that I am suffering from Moebius syndrome.

The people of Nepal are suffering. People and families who are going hungry or experiencing great trauma are suffering.

I am living, not suffering.

Yeah, it sounds like I’m just being really picky… but for me, and for many others living with chronic conditions of all kinds, that distinction defines so much. It defines how you approach me, how you approach the fact that I happen to have a rare medical condition.

If (the general) you approach my having Moebius syndrome as suffering, I immediately feel on guard. On guard for what, I’m not sure – pity? condescenting-ness? mid-understandings?

Perhaps I need to work on seeing the other side of things and think in terms of educational opportunities and different life experiences and such… but I don’t always have the energy for that.

I’m too busy living with Moebius syndrome. 

 

Having grace

grace
ɡrās/
noun
1.
simple elegance or refinement of movement.

2.
(in Christian belief) the free and unmerited favor of God, as manifested in the salvation of sinners and the bestowal of blessings.

verb

1.

do honor or credit to (someone or something) by one’s presence.

Thinking about grace today – not only about a girl named Grace who passed away far to soon, but about having and behaving with grace in my everyday life.

I want to say that I behave with grace in my life. I aspire to that. I try. But sometimes it is difficult. Emotions get in the way, passions collide. Self-preservation takes over. Grace is forgotten in the chaos of everyday life.

This shouldn’t be the case, and I am determined to find the grace I know is everywhere – savoring the happy face of my dog at the end of our walk, spending time with my family, looking at awe at the one thousand pound horse who lets me mount him. The magic of witnessing passionate performers giving their performance of a lifetime.

These are my moments of grace. Everyone’s moments are different, but they are everywhere. My mission is to pay attention to and absorb these moments, and to channel that energy in the moments where I feel lost or disillusioned. I will try. It will happen sometimes and undoubtedly will fail at others. But trying is truly living with grace.