Cyborg Dance Projekt: Failing, but not actually failing

I remember when I first got back to belly dancing post-surgery.  That was the birth of the Cyborg Dance Projekt.  When I started that journey, I wasn’t sure if my body would be able to handle it.  It was around 6 months post-op, and I was still in a lot of pain that still necessitated opioid pain medication.

As I reflect on this almost-year long project, I’ve been beating myself up the past four or so months about dance.  My pain level has been creeping up again, and I found out that my L4/L5 vertebral joint (the one above my fusion) is having physiological issues.  I’ve known this symptomatically since a month or two after surgery, but I couldn’t get a doctor to listen to me or to take my concerns seriously.  

I’ve been beating myself up because I’m signed up for ATS Homecoming in January including General Skills & Teacher Training, and I’m afraid that my body can’t handle it (it’s 4 days of GS, 3 days of workshops, then 2 days of TT, each with about six hours of studio time).  I’m not comparing myself to my semi-pro dancer days (which, in retrospect, would have been pro if I wasn’t so shy and socially awkward), but I am comparing myself to last summer.  I would sometimes take three classes back-to-back.  I would take classes several days in a row.  I had a better home practice routine.

This fear was really eating me up until I realized something while talking to my partner.  The difference between the past few months and last summer is that I’m in classes for my PhD.  I have six hours a week sitting upright in a classroom on top of my 20 hour a week assistantship (along with the other meetings and whatnot that are unpaid requirements for getting a doctoral degree).  I have things that eat up my energy and my time, and I’m not a supercrip.  My body is just telling me that I can either have my academic work or my dance work, that something has to flex for the other thing to fit in my life.

This realization isn’t giving me any peace like I hoped it would though.  It’s making me realize that if I want to dance more while working and going to school, I need to figure out where I can conserve spoons (time/energy units).  I really need to get a mobility scooter for campus so I don’t waste my ability to be upright on things that don’t contribute to my goals.  Heck, I’ve been so bad lately that I haven’t been doing any extraneous walking….it’s to and from my car, from my car to a close building, back to my car.  I don’t go to the library for any reason unless it’s an absolute requirement.  I will go without eating for 12 hours so I don’t hurt myself going to the student union for food.  Pain is jacking up my mental health, and I need to figure out a way to get my needs met as a student, as an employee, as a spouse, as a pet parent, as a friend, and as a dancer.

So, I’m back to fundraising for a scooter that will help me be able to have the time & energy to dance, be a fully functioning doctoral student, and a happier individual that is active.  Here’s the GoFundMe link if you can help out….most insurance companies won’t pay for mobility equipment if it’s not used all of the time, including inside the home, so I’m forced to figure out how to pay for this on a grad student stipend…which means I’m fundraising.

TL;DR- Dance isn’t going as well because school is wearing down my body…but it’s ok, I’m figuring out how to cope

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End of the semester self-care list

It’s the end of the semester, so I’m incredibly busy between writing, last minute research-related stuff (ugh transcription), stats….and my usual healthwork schedule.  I figured I would steal a few minutes to post and show what I’m trying to do for self-care so I don’t completely fry out (and maybe some of these things will help other people….that would be awesome).  Hopefully this makes as much sense as I think it does!

  1. Eat.  As much real food as possible.  Seriously.  This is the time of year where I eat really strangely.  Part of this is because I tend to do a lot of writing in diners and restaurants (it’s an easy way to force myself to not tinker around on the internet when I should be working).  The other side of this is I will forget to eat if I’m not writing in various eateries or coffee shops.  I’ll find myself woozy (yay years of dieting screwing up my hunger signals…I go from “I’m a bit hungry” to “oh crap, I’m so nauseated”….not a helpful biological response, but that’s what my younger self taught my body to do and I get to pay the price for that).  Not being properly nourished will keep a writer’s block firmly planted…because brains need fuel too!
  2. Take breaks!  There’s a good amount of psychological research that shows that taking breaks can help keep your energy up and keep stress from overwhelming you (or keep anxiety from completely ruining any attempts at working….which is what happened to me this past weekend).  I’m trying to use an app for my phone called Unfuck Your Habitat….it’s meant to help a person with household chores, but it has a 20/10 timer on there that I’m finding useful to force me to persevere when I’m having trouble and to not feel guilty about taking breaks.
  3. Sleep!  Not sleeping will make it hard to concentrate and will really mess with your mental health.  Not getting enough sleep will also impair your ability to eat properly as most people’s bodies will push you to eat comfort food (aka generally not good brain food).  The last time I pulled an all-nighter I lived on cookies & cream ice cream (and I have a bit of a gluten intolerance, so this didn’t work out well).
  4. Get social time.  This is one of the hardest things this time of year, but hear me out.  This depends on the person, but for me this includes eating dinner with my partner, studying with other people, or checking social media during my enforced breaks (as per #2).  I’m an introvert, but I notice that if I don’t get enough social time during this time of year, I feel particularly fried.
  5. Find time to have fun.  Again, this can be really hard, but giving yourself time to even play a game on your cell phone can really help with stress levels.  I have a few casual games of Words with Friends, Bookworm Heroes, and Evil Apples going on my phone for this reason.
  6. Get outside, at least briefly.  I have a sleep disorder on top of everything on my broken body list, so this is really important for me.  Make it more than just getting in and out of your car, waiting for public transport, or going from one academic building.  Make it deliberate.  Breathe in the air if it’s feasible (I live in pollen-land, so I know this isn’t always a good idea for folks), get a few rays of sun, listen mindfully to the birds/cars/yelling teenagers/etc.  Make it a stop outside for the sole reason of being outside (if your health allows for it).

I hope this helps someone out there.  I know that writing this down has helped me realize what self-care looks like when I need it the most (even when part of my brain is yelling at me that “there’s no TIME for ANY of that!  Must do ALL THE THINGS!”).  Not everyone’s self-care list will be the same, and that’s just fine.  Feel free to comment below if your list differs or you think I may have missed something.

A new online space for sick and disabled scholars (and students)

Based on a lot of conversations with other disabled and chronically ill scholars and students, I realized that there really needs to be a space of our own where we can vent about access issues, microaggressions (and overt ableism), crowdsource accommodations, and anything else that people need/want to discuss.

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NWSA 2014 selfie while sitting next to my wheelchair

It is currently a closed group, but people are welcome to join.  As of right now, it’s called Sick and Disabled Scholars (I’m hoping someone comes up with a snazzy name, but the only idea I have is taken up by the blog PhDisabled). It’s open to professors, students, independent scholars, and any other way a person might self-define to fit under that umbrella.  Same goes for definitions of sick or disabled….chronically ill, handicapped, spoonie, gimpy (I’m not the self-definition police…I tend towards the shocking and un-PC).  It will also be advertised on the blog Conditionally Accepted (if you haven’t checked it out, it’s pretty awesome).

Back to the school grind…

10 Things You Should Know About Disability, Race, and Health

Intersectionality matters….here are some reasons why…

Disability Fieldnotes

  1. Disparities in health and life expectancy for minority people with with disabilities reflect broader trends of inequality in the U.S.
  2. People with disabilities confront complex and overlapping stereotypes, assumptions, and false beliefs regarding both disability and race, including when obtaining medical care.
  3. Blacks and Hispanics with disabilities self-report lower health outcomes than do their white peers.
  4. Race can literally determine survival.  In one study, the three factors most closely associated with increased mortality of children with Down syndrome were: a) low birth rate; b) presence of congenital heart defects; and c) race/ethnicity.
  5. Race can play a significant role in the diagnosis and subsequent treatment of a condition, such as in the case of mental illness.  Even when displaying the same symptoms, a Black patient is more likely to be diagnosed with schizophrenia while a White patient would be labeled with an affective disorder. (See here.)
  6. 48% of Black…

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Pre-performance selfie

Pre-performance selfie

Since I’ve been too busy to properly blog lately, I wanted to share this pre-dance performance selfie (I never thought I would be able to rock a bright pink lip, but I got a LOT of compliments!). Eye liner is black liquid liner from Revlon, cheapie false lashes, Rimmel Stay Matte foundation in the lightest color they have, cheapo blush, and NYC Expert Last lip color in Forever Fushia (foundation & lipstick were complimentary promotion items through Influenster

Chronic Illness and the Question of “Access”: A Primer/Manifesto in One Post (RIDES AGAIN)

As someone with chronic illnesses & disabilities, this was a really helpful post on how to deal with gatekeepers. I only wish I had the spoons to do this as effectively as she does it!

It's complicated.

NOTE: This post was originally published on January 14th, 2014 at 23:09 CST. It was subsequently removed from my blog in order to make some minor edits and clean up the text. This version has been slightly revised.

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This post is a sketch of ideas that have been coming together in my head lately. I suspect I’ll probably revise it (even more), expand upon it, and link it to other, forthcoming posts.

You see, I composed this in the wake of conducting more than 12 hours of phone calls—over the course of 4 business days—necessary to get just 1 medication filled. In the coming weeks this scenario will repeat itself (since I take more than half a dozen different medications) but for now the biggest battle has been won. [1]

The reason why payors do not like to pay for the medication I just wrangled and sweated to get…

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No Man’s Land

If you have privilege, it’s your job to speak up against injustice….it doesn’t matter what your privilege is (race, class, sex, ability, identity, etc), and it’s not my job as an oppressed person to educate and fight.

Fierce, Freethinking Fatties

Privilege — it comes up a lot when you are in any Social Justice movement. Depending on how long you have been around, you can have a pretty good idea of what it means and how it works. But, if you have been around long enough, you get to hear ALL of the derailing arguments and you get to see a very well-made point spiral down into nothingness. I want to talk about one in particular.

Click the pic for an awesome talk about “The Privilege of Being Part of the Problem.”

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