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Hi, it’s been a minute, new blog post. Link in bio.
Gotta get back to Hogwarts Gotta get back to school Gotta get myself to Hogwarts Where everything is magicooooool
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!

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Now what.

It’s amazing how quickly things can change.

Two months ago, I was preparing for the final run-throughs and theatre week of our spring show, Snow White. Now, I can’t even make it to a ballet class because my body is just too drained. Heck, I can hardly make it through a work day at this point, and it’s the off season.

Granted, two months ago, I was struggling so badly with whatever was attacking my body. I remember the rehearsals where I had to sit out and lay on the floor with minimal movement just to avoid passing out, with no explanation. I remember the freighted look on the cover’s face as she had been so new in to be the cover for the role which had about 6 different ways the dance could be done depending on where you stood, and she had never done my section before. (She pulled it off, like an epic cover.)

But now, I’m diagnosed. Something I’ve waited over a decade for. I know at least part of what it is that’s causing me to feel this way, even if I’m not 100% sure how it began or what caused it to stir up. I can’t just sit back and pretend like it’s not a thing anymore.

This is a thing.
I feel this thing.
This thing is exhausting as heck.
I can’t ignore this thing.

It’s annoying, not being able to do things that a normal person should be able to do. It’s frustrating, having to scale back and limit myself so much. It’s exhausting, having to explain it to people who don’t really believe me just so I can press through the things I can’t cut out of my life. Existing isn’t supposed to be this exhausting.

I have a great group of friends who are here for me, and without them there to listen to my endless complaining, I don’t know where I’d be. One has even offered to come over and help me get my house back in order from the recent flea infestation epidemic. (Note: if you live in a house that on pier and beam, get dang skirting around the bottom of the house so stupid cats can’t come and live under your house with their flea infested selves, causing them to get into your house.) This is huge because I’m currently having to stay in my parents house, which while I appreciate them so much, it’s its own kind of draining, being there.

Still, most of this I have to face alone. I don’t know what I’d do without the help of friends, and occasionally my sister, who graciously went to the grocery store with me Sunday because I honestly didn’t know if I’d make it through a crowded place and manage to get everything I needed without panicking or perhaps passing out.
But aside from the occasional time someone can help, it’s just me.
I still have to work because I have bills I have to pay and no one can help me pay them.
I have to keep my house in order because I live alone and no one is gonna do it for me.
I’m an adult. Living a successful life on my own. And now illness decides I’ve been avoiding it’s subtle nudges the last 14 years. Apparently it decided it was time for an onslaught of struggles. Ones I find it hard to ignore or avoid.

I’ve been exhausted since about 12:30, but really I’ve been tired since my eyes opened this morning. There were about two hours that were manageable, but now I feel like I just ran a marathon and the endorphins have worn off. Except I’ve been sitting at my desk most of the day, doing simple bookkeeping. After this, I have to go to recital rehearsal for my babies, which I’ve never done before and makes me pretty anxious. I don’t entirely know what is expected of me, though I have asked a dear friend what I need to know and she’s helped me out immensely. I’m just afraid I’ll miss something. I probably won’t. Ugh, I want my bed.

This new reality has my heart in a sense of grief.
My doctor encouraged me to still attend dance classes, but no more than I can handle. (ie. no more shows. Which, I mean, I knew that.) But at this point anything past work seems like too much.

I want nothing more than to be able to take class. To not feel like I could fall asleep anytime or anywhere if I just closed my eyes for more than 30 seconds. I want to be normal; have a normal life, pursue the things I love, get out of my house more than just to come to work, hang out with friends. All of this has really just begun for me–the extremity of it, that is–and my mind is already going a million miles an hour. I want to sleep for five days, but even then I know it wouldn’t do anything. It’s not so much that I’m sleepy or tired, it’s that my body is physically drained.

I’m trying not to worry about what the future may or may not hold, but that’s also kind of difficult to do at this point. I’m not sure if I’ll ever improve past this point. Right now, I just don’t want to get worse. I can’t tell if the medications are helping or making it worse, but have a fancy app that helps me keep track of what I have to take and when and how my body reacts. So that’s cool.

I hope this blog is still able to be one where I get to post about ballet, and that I don’t find myself unable to go.

One thing is for certain, I am extremely grateful to the discipline I have learned the last five and a half years that I have been taking classes. It’s helping me to endure and do my best to fight this stuff however I can.

I hope you stick around, still, even in the uncertainty of my future in dance.

The last class I took was a wonderful class, though I find myself doing better after a break since I don’t think to compensate for things that hurt, haha! I got a bunch of great compliments from my teacher and even if the moves caused some pain, they felt good to do. Ethereal, even. I caught myself in the mirror at barre and couldn’t believe that this was me here, doing this thing, and looking this way doing it. Almost as though a dream had been made real. I don’t ever want to lose that. I don’t want to have to give it up.

Hopefully I’ll be able to make summer classes. And if classes are just too late in the fall, my porch is done which gives me room to actually try things, though the boards make stubbing my toes a high probability, haha.

In the midst of all this, I ordered a new skirt from Flic Flac Dance that I’m really excited for. Hopefully it’ll be the inspiration I need to keep myself moving.


This entry was posted in dance.
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