Did my almost-yearly pilgrimage (yes, a pilgrimage. lol) to New York City. Saw some art, saw some theater, got terribly lost a few times, ate lots of food I don’t get in CA (come on Shake Shack, what do you have against San Francisco!) – here are a few pictures…
So I know we can’t have it both ways. We can’t complain about people with medical conditions being treated like children then gush over cute childlike things…
So I have a confession to make, I guess. I love my Aerochamber Bear.
I mean, seriously! He’s cute, and look at the happy lungs at the end of the sequence!
He makes me happy every time I use my Aerochamber (with Mask, hence Bear – apparently only children need masks?)
I know I should do something and analyze why there are no non-Bear Aerochambers with masks… but I don’t want to. Mister Aerochamber Bear and I go way back, and I don’t want to jeopardize our relationship.
So for now, we will continue our twice-daily conversations about lung health and balls with paw prints, apparently.
#NoFilter take two
So once again Snapchat, in all its weird dysmorphic glory, gave itself a facial paralysis-mimicking filter.
It’s funny, because in some ways I’m not completely insensitive to the weirdness of medical conditions. I sometimes laugh to myself as I delete the Google Alerts I get listing Moebius Syndrome as
Top Ten Weird Medical Things!!!
…but somehow, I can’t take this with a grain of salt.
I admit: I don’t get Snapchat. I’m not a fan of notifications on my phone, not an overly-selfie kind of person. So sending slightly distorted photos of yourself to friends just seems a bit odd.
Having said that, there is a difference between the humor in superimposing dog nose and ears onto yourself and playing around with morphing your face and thinking of that as funny.
There is humor in everything. Even facial paralysis. But that humor needs to come from the source. From people with facial paralysis. It doesn’t need to come from pretending and emphasizing the oddity.
I hope we in the facial paralysis community continue to create our own humor, and that it overpowers the humor of the Weird that things like Snapchat filters emphasize.
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Books and Dogs
So the perils of a busy life with a chronic illness is that I:
- Do absolutely nothing extraordinary and blog worthy besides work-dog-horses-volunteering
- Am totally using my creativity to do those things and have nothing left to blog with.
So that’s good and bad. Doing too much is better than doing too little, although my body sometimes objects to this assertion!
BUT! I actually took a day off this weekend and did something fun for myself! Yay!
Amazing hildren’s book author Laura Numeroff (of If You Give A Mouse A Cookie fame) wrote a simply adorable book called Raising A Hero, about a young boy raising a Canine Companions for Independence puppy.
She is doing a series of book signings throughout the San Francisco Bay Area, and of course I had to go to one and fangirl a bit! I think Cassius enjoyed her as well. I’ve been connected with her on social media for a bit and she not only remembered me and was excited to meet Cassius in real life but was incredibly gracious with everyone!
On Saturday we had our yearly Northwest Graduate Seminar, lots of useful info and workshops (including a wonderful presentation by a PTSD graduate) – and Cassius and I passed our recertification and got a snazzy new vest and leash!
We did the requisite pose by Snoopy.
And said hi to Ada, the campus kitty!
It was a really good weekend.
Hear Hoofbeats? Think Zebras
I don’t know where that phrase originated in the rare disease community, but I love it. If we are going to take this even further, I am probably a zebra with extremely funky and unique stripes as I’ve managed to get myself a collection of unrelated rare diseases.
Thinking zebras is important for the Moebius syndrome community. Individuals with Moebius syndrome and their families have to be innovative, think outside of the box to problem solve difficulties and develop the mentality that being a metaphorical zebra is okay.
Thinking zebras is important for me, and for others living with rare diseases. Life with rare diseases oftentimes necessitates ingenuity, creativity and adaptability. To be able to think outside the box when one hears the metaphorical hoofbeats is crucial for quality of life.
Thinking zebras is important for the community when encountering rare disorders. There are more than seven thousand rare disorders, with advanced genomics discovering even more disorders every day. I personally don’t fault anyone for not knowing about all of them, but hope for kindness, empathy and support for those of us with rare diseases.
Thinking zebras is important for the healthcare community, especially for rare diseases where there is no known genetic cause. We still rely on clinical diagnoses, which may not come, may be incorrect, or may simply just take entirely too long to arrive at.
Thinking zebras is important for allies of the rare disease community, who wonder how they can help us raise awareness and mobilize.
Thinking zebras is important for researchers in rare diseases. The theme of Rare Disease Day this year is With Research Possibilities Are Limitless, but research into rare diseases is often frustrating and sometimes fruitless (see: Moebius syndrome research, where they have not found anything genetic yet!)
So next time you hear hoofbeats, look carefully as the zebras gallop by.
Happy Valentine’s Day
I wrote this today while watching the Super Bowl and remembering how much I indeed enjoy Lady Gaga.
One doesn’t listen to Lady Gaga to overanalyze the lyrics, because they are actually a bit weird and nonsensical but I’m kind of still obsessed that a song about facial expressions, the lack thereof and the value we put on them and perhaps shouldn’t is out there in the universe and is being listened to.
That half time show was just a nice reminder that the song exists and of how powerful it can be to hear it sometimes…
Just a few of my Moebius Syndrome Awareness Day photos. Not really in the mood to write anything as honestly as I don’t have any novel thoughts on the day or anything else. But photography is a bigger outlet for me right now, so here ya go.
Be aware. But beware of how you are being aware. Whew, a mouthful. But true.
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.