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Mischief Managed.
I solemnly swear that I am up to no good. #leakycon #leakycon2018
Y’all, check out my friend Baileys announcement!! I’m so excited for her and super pumped to watch this series she’s a part of! #Repost @catchingbreaths with @get_repost ・・・ The concept is simple: follow someone’s journey from surgery to stage. Showing the life of a mucus mutant. Showing the life of a bilingual Deaf family. Showing the life of a dancer and @companythreesixty dancers. It technically hits all the hashtags: #spoonie #deaf #adultballerina #bodypositive #chronicillness. It hopefully connects with many communities and provides another voice in the chorus of those wanting representation in media abound. It is positive: a positive network with a positive focus wanting to counter the negative swarmy troll farm that is most modern media to date. But... what if the concept becomes a reality? What if I show not just the recovery from latest rounds of surgeries... but the pain and swelling and funk between? What if I don’t fulfill some sort of diagnostic paradigm being that I am an Atypical diagnosis (and someone who hopes not to be defined by that anyways where I can)? What if we capture not just the invigorating process of putting together a show with women I ferociously admire and protect... but also, how totally messy dance life can be? What if we showcase a family that’s equal parts Deaf as hearing... yet our variable mix of signing, reading lips, caption and speech isn’t in keeping with what the world wants from us? Choosing to share our story has come with a lot of IFs... but we are braving it none the less. Although I can’t believe our pilot episode premiered TODAY and that I can finally announce the news... fear of judgement subsists. Can perspective, positivity and living an imperfect life as openly as possible actually be of benefit? The verdict is still out... but I’m excited to try. I’m excited to see. And I’m excited to get started.▪️Click Link In Bio To Watch The Pilot Or Go To:▪️#CatchingBreaths
The builders weren’t out today, so I decided to have one last hoorah in our still empty, hurricane Harvey-Ed house. They’ve finally begun repairs, and I’m super pumped for it to be fixed, but also a bit sad at the loss of the house as we knew it and how it was growing up. Here I’m in our game room, the red wall is my bathroom, and to the right is my old bedroom, where I was the night before the storm came. The bed I slept on had ceiling and insulation fallen on it the next day. Still pretty surreal almost a year out. TL;DR I love my new @sodancausa dance sneakers I got from @cinqdanceessentials ! Super pumped for the new year!
We had a guest teacher in class last night. I wrote a blog post about it! Link is in the bio. (Spoiler. It was wonderful.) Thank you so much, @linds779 for teaching us! (Ps. My shirt is from @balletlibrarian ‘s book Cantique, you can totally still get ya one. It’s my favorite, obviously.) PD: photo of me and Lindsi Dec from Pacific Northwest Ballet after class.
Once upon a time, my toes used to touch the floor.

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My doctors appointment was Friday. I’m not sure what I expected, really, I guess I just hoped it would be an easy answer. I should have known better. 

She doesn’t think I have eds, she thinks it’s autoimmune related, yet we haven’t found more than they think I have ibs. Which, unless there’s more to ibs than what is commonly known (which is all I’ve been told) then I really don’t think I have it. But I don’t know. Whatever. 

She gave me orders for labs to be run for autoimmune disorders, as well as for eds. She separated them so I can do them separately if they’re too expensive since I don’t have real insurance. (It’s a sharing program, which is legit, but I don’t know if it covers this stuff. It’s frustrating.) 

Being real, after my appointment I sat in my car crying. I’m pretty sure the other set of labs she’s ordered are ones I’ve already done with no positive results. It’s disheartening to know I have to pay money I don’t have for labs that will more than likely come back negative. I don’t have anything left in me to try and figure out the complex insurance situation, yet I have to find a way to do it. My cousin has her appointment to be tested for eds in a couple weeks, so I’m going to hold off on that until she has her results. No sense spending copious amounts of money I don’t have to be tested for something if she comes back negative. (It’s genetic.) 

I was able to explain to my doctor how I’m not okay. I told her how there are things I’ve previous been able to do just fine and now I can’t. She asked if it was just since I’ve started ballet and I explained how some of it is literally just in the last month. She asked if I was overworked. I laughed. Yes, I am, but I have no choice. And I’m doing significantly less than usual and way more wiped out than usual. 

She did examine me and found my right wrist to be swollen at the joint, which concerned her. She didn’t say much about the rest of the stuff she was looking for. 

I like that she doesn’t make me feel stupid when she thinks I’m wrong. Still, I felt stupid and naive and beat myself over the head on how this all just has to be in my mind, or that I’m making it out to be more than it really is. That I’m just being dramatic and need to get over it. 

Which is all fine and good, until I do just that and find myself getting super sick from pushing through. 

None of it makes sense. 

Yesterday we had snow rehearsal. I had a few friends help me with snow on Fridays to try and get it all clean and together and remember it all. Then my friend Adrienne and I went over it before rehearsal even started to make sure we had it down. 

I still have some working to do, as I can’t quite seem to get the step correctly. My teacher worked with me on it and showed me the proper way to execute it, so I just have to work on it to make sure it becomes fluid the proper way. I happen to be in the front for this part, so it’s extra important. Plus, I don’t want to be the one that messes up the beauty of the part for everyone. I want to do everything I can to be my best, and work hard at this to get it right. 

Sometimes I go along through class and rehearsal and feel like I’m the only one that sees me. That I blend, my details becoming near invisible. Not in a bad way, in an almost comfortable way. But I’m not. We’re seen. There’s always someone looking to us. We have influence, more than we realize. We are each a component in what makes up the big picture that is current reality. And if you ever feel like you don’t matter, just take a second to really realize what that entails. We all matter. We all have value. 

We’re also doing secret santa amongst the Snow cast again. This is my first year participating, and I found myself very nervous leading up to it. But I got someone that I’m excited about giving things to, so it’ll be good. 

We have flowers rehearsal today, which I need to brush up on the ending bit before we get going. I love flowers. I think it’s my favorite dance I’ve done. 

Keep going. Keep enduring. Keep fighting. 

Keep breathing. Half the battle is getting past the voices in your own head telling you you’re not enough. You are enough. You’re more than enough. And you being concerned about being better and striving to do so is proof of that. You’ll get there, my darling. Keep pressing on. 

This entry was posted in dance.

2 comments on “Invisible. 

  1. I really hope you are able to find out soon what is going on. That must be really scary.

    I’m thinking of you

    Liked by 1 person

    1. Thank you, my friend! I’m hoping so as well. I keep trying to act like it’s nothing but getting to the point where I can’t anymore is rather frightening.


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