Rare Disease Day 2015



Saturday February 28 is World Rare Disease Day. I’m always happy to support this effort – the numbers are staggering, if you think about it: one in ten people are affected by a rare disorder (if you like infographics, Global Genes Project has a few illuminating ones related to rare disorders).

Although all 7,000+ rare disorders are obviously different, the experience of living with these conditions share many commonalities – the search for a diagnosis and knowledgeable physicians, the search for information and community, and the powerful connections you get with shared experiences.

It’s important to channel the National Organization for Rare Disorders motto – “Alone we are rare. Together we are strong” because it is true – the collective power of this community is truly powerful.

Because I have a t-shirt purchasing problem (and because I really love the sentiment and meaning of this shirt), I just had to get this one from Global Genes… I truly do know and love so many people in the rare disorders community. And I try to love myself, as much as my perfectionist self can! Maybe wearing this will have it rub off a bit…

Dogiversary

Dogiversary? Cassiversary? Cassiusanniversary? Whatever I want to call it happened this weekend! 2 years ago today I spent my first full day post-Team Training with Cassius. I remember being a bit overwhelmed with the magnificent dog entrusted to me and the responsibility that comes with it.

Our first outing was down the street to Peer’s, so of course I repeated that… this time at Starbucks, and with an additional Puppaccino for the dog (tiny bit of whipped cream!) Cassius, being the food lover that he is, enjoyed this immensely:
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We went on a nice leisurely walk around my new neighborhood (stopping at not one but 2 pet stores, one to weigh Cassius and one to buy him an anniversary gift – a Hurley from West Paw Design!) and I thought a bit about our partnership. Cassius has seen me through 3 apartments, 3 different jobs (yeah, sounding a bit like the Liberty Mutual commercial…), each time with an inquisitive demeanor and willingness to adapt.

He’s as happy to go out as he is to spend the day in bed (although he is a great motivator to go out! I’m in better shape thanks to him)! I love his love for me (obviously!), but also for the people who he knows love him… he just knows. His personality is the perfect mixture of calm and a latent bit of goofiness that emerges seemingly when I most need it.

Cassius just radiates his personality… I’m continually told how “kind” and “sweet” he looks, and my response is always “Yes!” He is not an effusive dog (usually, unless you’re meeting after being apart for a bit!) yet just radiates a “ok, I got this!” attitude. I appreciate that. He helps me channel my own”ok, I got this!”

The outward things he does are obvious, he is quite the expert at picking up keys and loves getting and carrying the mail. He helps me walk and not fall. Hr makes me get up and do things even when I hurt. People give me a second chance (and don’t honk at me for walking too slow!) Those things are invaluable, too.

So thank you, Cassius! Much love and thanks to my serious silly boy. I hope he knows how much I love him. I am sure he does.

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Happy Valentine’s Day!

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Of course the dog needs a Valentine! I Wuff him indeed.

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Spent the morning at puppy class, what can make you feel more loved than a bunch of sweet dogs who just want to snuggle and be loved on?! A great way to spend my pre-dog-anniversary!

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Cassius absolutely loved Friday, the teeny tiny 9-week old puppy! They touched paws and noses and it was adorable. I think he wants a side job as a puppy sitter.

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We did a lot of ups and downs on weird surfaces to acclimate the puppies, my favorite was the random fake rock (christened Mount REI) in the shoe department… we scaled it, too!

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It was a fun, but exhausting, morning and we both had to rest for the remainder of the day. I think Friday did the same.

Disability in the ALA Youth Media Awards: Separate and Equal

Of course I was excited last week when the Schneider Family Book Awards which “honor an author or illustrator for a book that embodies an artistic expression of the disability experience for child and adolescent audiences” were announced at ALA Midwinter.

I’ve only read the middle-grade winner – Rain Reign by Ann M Martin (Babysitter’s Club author, in case you lived under a rock or had no elementary-school aged children in the 90s), but thought the story of a girl with autism learning to love and let go when she encounters a lost dog was wonderful. I’ve requested and ordered the other two for my library system.

What really made me (literally) squee, however, was that Cece Bell’s El Deafo was a Newberry Honor book. This funny and touching graphic novel explores what it is like to grow up wearing hearing aids and attending a mainstream school. I am so, so happy for this book that it was recognized.

I am especially happy, however, that it was recognized separate from the Schneider category – because while it is important to recognize marginalized groups and create recognition for works exploring them, the ultimate goal is to de-marginalize them and not have to limit “disability literature” to one category. It is great that the nominating committee saw fit to see beyond genre boundaries and pre-conceptions in this case.

I highly recommend reading through these books and the others that have won in past years.

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Bruises Aren’t in Style

I am clumsy. Everything is usually slightly blurry. This combination usually leads to me crashing into at least a few things a day… and I often have the bruises to prove it.

Tomorrow I have a potentially-important interview for a promotion (well, actually to get on the list for upcoming opportunities within the higher promotional class). I’m of course a little nervous, I want to get a good ranking and do well… and now I’m concerned also about covering up this ridiculous bruise on my knee! Because of course I need other, random, non-work-related things to worry about!

Maybe that’s what’s really salient about life with a chronic condition – these “extras” that complicate life. The things you worry about that no one else does. There are hidden bruises, too – experiences unique to life with my medical conditions that I carry with me. I carry those, too. Sometimes they hurt as much as physical ones.

Hoping for a good interview and hidden bruises tomorrow, both physical and metaphorical.

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Pile O’Awareness, and of History

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A stack of t-shirts sits on my bed. They span 6 years, the entire United States, and come from a variety of experiences I have had in the Moebius syndrome and rare disease community. Some I wish I could relive, some I wish I could change my response to, some I am still not sure of. But they are all there, sitting on my bed in front of me,

These t-shirts represent communities, constructed by chance, by choice and perhaps by necessity. They are communities that sometimes I wish I could escape, but know I cannot. Communities that have shaped me and supported me and pushed me. Communities that have, most of all, taught me.

January 24 is Moebius Syndrome Awareness Day, commemorating the birth of Paul Julius Mōbius – a German physician in the 1880s who first described the syndrome. It is a time for awareness-raising, of course, but it’s also a time for reflection. About how we navigate the world with a rare disorder, about how we negotiate real-world life with the online community we have formed, about how we raise awareness in everyday life, not just one week a year.

I tend to be more quiet, and approach awareness raising in the same way – open to awareness-raising, but guarded. Probably too guarded, but that’s a post for a different day (or never). Other people are most comfortable doing it in large-scale ways. Both are needed.

All kinds of things are happening this weekend – get togethers, news stories, social media campaigns… I’m spending Saturday day working, and Saturday night undoubtedly catching up with what I’ve missed! I’m looking forward to seeing what is accomplished this year, and what will happen looking forward to next year and beyond.

My friend Kathleen Bogart just published a study about how awareness leads to understanding. And that is what ultimately I think anyone, but especially those of us living with unique medical needs, want. I don’t even care if you can’t remember what it’s called, honestly (best line ever “whatever-it-is-that-you-have-again?)… but understanding is paramount to acceptance. And we all, ultimately, yearn to be accepted. I think I, and others, are doing good work towards that goal.

So this pile of shirts represents a history, my history, with the Moebius syndrome community. It represents me navigating my unique journey. These are my choices, my desires and my mistakes. They are uniquely mine, just like all of the individual experiences living with Moebius shared on Moebius Syndrome Awareness Day.

Together, they make a visual embodiment of a layered story. My story.