Natalie A

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

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!)

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.

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.

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.

Chronic Illness Bloggers Holiday Giveaway #spon

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Back brace as fashion statement

My favorite brown pants. Black v-neck. One of my favorite sweaters that I can only wear when it’s sort of chilly so it doesn’t itch but not too chilly that it’s not warm enough. And an Ace bandage back brace hidden beneath it.

That’s what I wore to work today.

And that is how I feel I live my life right now, not necessarily hiding things but just not having enough time, mental energy, willpower, who knows what to address.

I can get it together to get to work on time, have successful work days at my new and sometimes challenging job, do the volunteer commitments I have and have a bit of time for other fun things…

But sometimes I wish I could approach everyone I see and tell them that I hurt right now and everything I’m doing is informed by that. I have no idea what that would actually get me, since I abhor unnecessary sympathy – but maybe a bit of understanding?

The Aerochamber Bears

Since apparently only children need aerochambers with masks, I’ve been greeted with this aerochamber bear family for the last 20+ years.

I could be argumentative about it, about the infantilizing of products that can really help anyone and so on and so forth. But… I rather like these bears.

My particular favorite is the one on the bottom, with his happy wave to match his happy lungs.

I guess slightly childish things aren’t all bad.

—

And to make this a totally asthma post, this is living dangerously, chronic illness style (don’t worry, I have another ready to use now!)

The elusive cure

This is the text of my 2016 Stanford MedicineX Ignite talk.

An estimated one in three hundred thousand to one in a million people are born with Moebius syndrome. I am one of those ones.

The defining symptom of Moebius is facial paralysis — people with Moebius cannot fully smile, frown, move their eyebrows or move their eyes laterally, and many have limb differences and neuromuscular issues. There is currently no known cause for classic Moebius syndrome, and there is no cure beyond surgeries, therapies to alleviate the major symptoms.

Since Moebius syndrome is a rare disorder, I spend time with the rare disease community – supporting things like Rare Disease Day, GiveRare fundraising day, and assorted other dedicated days.

But sometimes I don’t feel like I belong. I’m not one of those who can hope for a cure.

A cure makes a good headline. A cure is a finite resolution. And researching cures for rare diseases can unlock clues about how to treat patients with more common diseases, which is one motivating factor why pharma companies are interested.

What I hope for is a new system that values support, relationships and learning from peer-to-peer networks the same way we value the elusive cure.

Moebius syndrome patients rely on eye medications, breathing medications, g tube and tracheostomy supplies, orthotics, dental interventions, strong prescription sunglasses since we cannot blink or squint in the sun. We definitely spend entirely too much on medical things. But we apparently aren’t exciting enough. Large pharmaceutical companies aren’t interested in providing information to patients, or donating to family conferences, or even in donating something as simple as a eye drops. Why?

Is the lack of payoff for an uncurable disorder not enough to justify supporting it?

How can we make improving quality of life – through both pharmaceutical and social interventions – as coveted as a cure? Studies have shown that social support is vital for people living with Moebius syndrome, and is life-changing for the nearly 100 people with Moebius syndrome and almost 300 family and friends who gather at our conferences.

It is often the first or only time every two years where their differences are normal. And that is invaluable.

The symptoms of Moebius syndrome can lead to tremendously awkward and sometimes offensive interactions where assumptions are made by appearance alone. A few months ago as I was toileting my service dog in my apartment’s courtyard, a man walked up to me and out of the blue asked me if I was on Section 8, because of the way I look. I was too shocked to come up with an intelligent comeback besides “no” as I hurriedly threw dog poop in the trash. Everyone with Moebius syndrome, or any visible disability, has had those moments. And they sting.

But rare isn’t so rare when there are 100 of you.

How might we value hope. support and relationships and learning the same way we value the elusive cure? Moebius syndrome can lead to these painful interactions, but it can also lead to resilience, creativity and strong connections. How might we value and prize the social connections and the power of community as much as we value a cure? How do you put a monetary worth on something unquantifiable?

Moebius syndrome will not be cured in the traditional sense. Missing cranial nerves and skeletal anomalities cannot be solved by a pill. And that is what it is.

So how might we advocate for increased industry support for patients where – while they rely on pharmaceuticals to improve, but not change, their lives – the main change will come from within? Is a change aided peripherally but not defined by pharma interventions worth investing in?

For those of us who are living it, yes.

Instead of hope for a cure, for me and others with incurable conditions, hope is the state of mind fostered by a strong community who knows and accepts the fact that not all things in life can be cured. Hope comes through connections, resources, strength and time, instead of in a pill. But hope is as valuable as a cure.

And some memories in photo form from the weekend.