Adventures in shopping: Target

The basket is balanced on the footplate, one foot in the basket

I didn't have much of a reason to be at Target last night, other than I wanted to just wander around.  Well, my spine was eight shades of unhappy, so I figured this was a good time to actually get rolling in the new wheels.

Thankfully my preferred Target is pretty darn accessible.  There are usually enough designated handicap parking spots with enough extra room for any equipment finagling, well lit, and pavement that's well maintained so I don't have any issues (like I did in Big Lots).  It was a bit snug getting through the security gate, which was a bit strange since my new chair is only two inches wider....and it made me wonder about power chairs and mobility scooters, not to mention various stroller configurations, a parent holding a child's hand, or folks using crutches...you know, folks that will end up taking up more room as they move through a gate.

So I roll on through, marveling at how much easier the new chair is to maneuver and how much better on my spine my foot placement is (the transport chair has swingaway footrests, which put my feet more out than under me, and sometimes just that placement causes issues.  The new chair has my feet at a more natural place, which also makes for easier maneuvering in daily life).  I grab a basket, and realize that my old way of balancing a basket on my feet won't work because of the footplate.  No worries, so I put the basket on the footplate and one of my feet in the basket.  The results are in the pic above (and pardon my grubby shoes...they are slowly dying, but are my favorite pair of "scuffies" that I own).

I wandered around clearance racks and almost was run into several times by people that weren't looking (because if you can't see over the rack, you aren't a real person? *shrug*).  I wove through the rest of the women's clothing looking for lightweight leggings to wear under skirts (because I'm giving up on pants, slowly but surely).  No luck.

I took a self-portrait using one of the mirrors at Target

I pretty much meandered through the entire store, just because I was happy that I could be mobile using the wheelchair.  For me, happiness is usually the precursor to silliness, so when I went past the home decor section with all the mirrors, I decided that this was an awesome opportunity for a self-portrait.  Honestly, if it wasn't for wheels, I would have been stuck at home, probably in my recliner on pain meds, and being agitated that I wanted to move but hurt too much to be able to do anything to relieve the antsy feeling.  Thank goodness for modern technology....and the opportunity for silliness and happiness.

My trip ended with the usual strange looks at the counter as I pulled a case of soda out of the basket and a bottle of multivitamins out of the basket.  Apparently the cashiers don't usually see folks using wheelchairs shopping independently, but after my cashier's initial reaction, it was business as usual as I pulled the pin pad down to be able to read it.

On my way and out the doors....whee!

"Push Girls" episode 1: a minireview

Wheelchair graphic from "Push Girls" webpage

So there's been some hype in the disability community online about a new reality TV show coming out on the Sundance Channel called "Push Girls."  The basic premise of the show is to follow four Los Angeles women with spinal cord injuries (SCI) who use wheelchairs.  A lot of folks in the activist community were worried about how these women were going to be portrayed (as was I).  Well, they released the first episode on ITunes for free download yesterday and I decided to give it a test-run.  Besides, there's a part of me that enjoys reality TV, although I haven't indulged in it in the last five or so years aside from "So You Think You Can Dance" and "Dancing With The Stars."  Also, one of the women on the show is a hip hop dancer, and I'm just aching to see more PwD's dancing on tv ("Glee"...I'm glaring at you right now.  Glaring intensely).

First, my initial concerns.  These are all conventionally attractive women, all of them thin, most of whom are white.  All four of them have spinal cord injuries, which is a very specific population of wheelchair users.  They are all shown living in nice homes in Los Angeles, which demonstrates a specific socioeconomic status (one that many people with disabilities do not have access to for a variety of reasons).  It feels like they're aiming for the "we're just like you, except we use wheelchairs" narrative for the show.

The actual show starts out like most reality shows and introduces the "real people" being featured.  Tiphany, Auti, Angela, and Mia are four women living in LA who have been friends with each other for five or more years.  The show introduces each woman and almost immediately dives into her personal story as to how she became injured with a spinal cord injury (all but one were from car accidents).  This is a pretty standard narrative for talking about PwD's in mainstream media, meaning that before we really get to know anything about these women's lives, interests, or personalities, we find out how these people were injured. 

We also find out pretty quickly that all but one of these women are paraplegic from their injuries, with Angela a quad.  It felt like a good majority of the show was spent highlighting Angela's struggles while trying to make her seem as "normal" as possible, repeatedly showing her doing her makeup for the audience (she is a model, so this isn't too surprising, but still felt like an excessive demonstration of "normal" feminine behavior).  Her video segments had this interesting push and pull between showing either how her life is different because of her impairment or how "normal" her life is despite impairment.

All in all, I think I'm going to keep following this show...but I think it's partly do to a continued frustration with the only other media portrayals of disability that I see (mostly "Glee" to be honest....which is pretty much a trainwreck for most anything related to diversity).  I probably won't pay ITunes for the privilege of watching it though, so I'll have to see if Hulu or Netflix will have it.

I'm giving up on pants! A fashion rant

Random acts of silliness in work clothes

I'll start out by saying I'm not the most fashionable person in the world.  I've always been more of a function and fit over fashion person, but I've found myself being more and more drawn to clothing as a means of expression as my spine issues have increased.  While fashion has always intrigued me, from watching America's Next Top Model and Project Runway to wanting to be a fashion designer when I was a kid, fashion has been something that I've always admired but never actually pursued.  In regards to my current surge of fashion-related thinking, I feel like it's more of a control thing than any real attempt to be fashion-forward, but it's really gotten me thinking about several intersections of my body, clothing, and the fashion industry.

So the other day I'm limping with my awesome flame cane over to the student union on my lunch break, slightly cursing the cute but comfy skirt I decided to wear because the swish of it was whipping against my cane.  It makes me think of an article I read on xoJane.com about shoes, skirts, and wheelchair use, and how I've joked that I will get some wild heels to wear when I'm wheeling (I don't actually expect this to happen, but it's fun to talk about).  It also got me thinking about the different reactions I get wearing different things while using different adaptive equipment.  There's some major fatphobia with fasion to begin with, so if I'm having a casual day or if I'm on my way to the gym, people read my body as a lazy fat person.  With a cane, I'm the lazy fat person that's disabled because of my fat.  If I'm on wheels, I'm the lazy fat person that's so lazy that I won't even walk or that I'm potentially too fat to walk.  As Sarah Eyre, another writer at xoJane, points out, adaptive equipment can really let you know who is worth your time and who isn't...and that goes double for bodies that are fat AND disabled.

So I keep thinking about skirts.  As a sporty person, skirts haven't been a huge part of my personal wardrobe, but I'm finding that they fit my body shape with less frustration than pants (Lane Bryant, I'm giving you the hairy eyeball right now...because your Right Fit pants used to fit me perfectly, then got redesigned to something just awful.  Folks with more than a ten inch difference between waist & hips need love & pants too!).  I've found comfy jersey skirts because of a modest dressing community on LiveJournal (if GetYourSkirtOn ever is back in business, I want more of their skirts!), thick twirly skirts from Champion, and thin foldover skirts from Old Navy.  I keep thinking about the excerpt from Two Whole Cakes that I read in Bitch Magazine about skirts and fatness.

Fashion can be a radical statement of subjectivity.

Dressing my body in a way that feels comfortable is a radical act.  "Feels comfortable" can mean "makes me feel disco ball fabulous."  It can mean "covers me where I want to be covered (or conversely, is bare where I want to be bare).  It can mean "doesn't get stuck in my wheel spokes" (whether that's a wheelchair or a bicycle).  It can mean "functions in whatever way I need/want it to function" and that can be a physical sensation, a mental acknowledgement, or a social engagement.  It can be really hard when our bodies don't conform to what the fashion industry sees as important, whether that's a huge waist-to-hip ratio on a short fat woman or that butt pockets for a lot of wheelchair users are generally unhelpful.

Easter 2004, I'm the Easter Bunny for grown-ups

Fashion can be whatever we want it to be, or whatever we don't want it to be.  Sometimes our bodies don't fit into size charts (most of us differ from the fit models!).  If I was more crafty, or had more time to actually teach myself to sew properly, I would probably make my own clothes like Lesley Kinzel talks about with her skirts in grad school.

So I'm giving up on pants.  Between my waist-to-hip ratio and my part-time wheelchair use, I can't seem to find pants that remotely work for me, either in fit or comfort-level, unless there's a drawstring waist involved....and I've never seen work-appropriate drawstring pants before.  I'm going to gather up some summer weight capri leggings and some breezy skirts that hopefully don't whip against my cane or get caught in wheel spokes, and try to find a way to incorporate them in my sporty and somewhat androgynous fashion sense.  Another day, another adventure...

Adventures in Shopping: Big Lots

The other day my boss let me leave work early, so I decided to bop over to Big Lots, a discount store.  I like just wandering around, seeing what kind of weird things they have for pretty good prices, and I really wanted to see if they had any cheap gardening implements.  I was having a pretty wonky spine day, so I decided to use wheels (sadly the old transport chair because I'm waiting for the cushion to arrive for the new one).

So I get out of the car, unfold the chair, and start wheeling to the door.  I notice that the curb cut is actually in front of the exit door, so I pause to make sure that once I muscle up the pretty steep slope I can make a ninety degree turn to go in the proper door.  I know I can make it, I'll just have to dig (hooray for strong muscles).

So right as I start to dig in for the ramp, some guy comes up behind me and starts to push me....not with the push handles that are on this chair, but on the soft back of the chair.  Thankfully I'm short enough with a hemi height (aka shorter) chair that he's not shoving the fractured part of my spine.  He never says anything to me, just shoves, and opens up the "Exit" door for me to go in while he's trying to shove me/my chair with one arm.  Once I get in, I speed off because I feel a bit violated and really don't want to say "thank you" to something that was unasked for and could have really messed up my body.  Aside from that, I have a small backpack that serves as a purse hanging on the back of my chair, so I really don't want some stranger touching my chair when my wallet is hanging out of my sight.

So I speed off, then start wandering around with a basket balanced on my feet and footplates (pretty standard shopping trip for me on wheels).  I get a few weird looks as the basket fills with gardening shears, potting materials, a laundry sorter, a plastic file box....essentially, random things.  I get to the cashier who seems nonplussed by my precariously balanced basket (maybe having someone roll into the line with a strange balancing act is normal?).  I pay, get rebalanced, and head out the door.

The curb cut is better suited for folks leaving the store with carts, so getting out was initially easier.  That is, until I found a huge pothole next to a grate with holes the size of my casters (the small front wheels on a wheelchair).  I back out, using my feet to push, then get stuck again.  I drop most of the stuff that's balanced on my footplates because of the jarring and sudden change in angle.  A fellow from a nearby store comes over and tries to help (again, without asking).  I pull out my car keys and unlock the car with the remote, and let him load the stuff in my back seat while I get unstuck and moved.  I thank him, tell him "no thanks" to helping get my chair in the car as I'm really picky about how the transport chair gets loaded (otherwise it rolls back and forth in my hatchback).

Seriously folks.  It's ok to want to help, but please please please ask first.  I have friends with some pretty awful stories involving "attacks of kindness" (a phrase I picked up from a friend of mine in undergrad).  Even if your unwanted help doesn't cause physical damage (like a finger caught in a wheel spoke...something that could have happened with the unwanted push I got into the store), unwanted help can be a kick to one's psyche.

I dislike water aerobics (and "gentle" exercise in general)

Giant rubber ducky!

I'm trying to give water aerobics the "good college try" but I'm not sure that it's really working out.  Part of my resistance to it initially was that it was in the list of common things people suggest when you have a "bad back" (by the way, it's not bad, it's broken).  Since my city has this awesome new aquatics center (with a fifty meter competition pool, a twenty-five meter heated therapy pool, and a diving well), I wanted to give it a fair try.  Hey, if it has the potential of being awesome, the big fancy pool will make it more awesome, right?  It was a good starting point at least!

Anyhow, I've been trying water aerobics about twice a week for the past three weeks.  I'm finding that I can't do any bouncing movements because it causes my spine to bounce up and down (so no water running for me).  I'm having to modify quite a few moves that are "gentle on joints" just because of the nature of my impairment..something I'm usually ok with, but it's more uncomfortable in a class situation.  People that don't know my situation think I'm modifying because of my weight and a presupposed level of fitness, which is just annoying (the fantastic Ragen Chastain at Dances With Fat talks about the myth that most fat people are sedentary).  These people don't know the me that used to do CrossFit and could back squat at least 170 pounds, bench 130 for 5 sets of 5 reps, or did "Grace" at 135 lbs (a CrossFit workout that consists of 30 clean & jerks for time...the video I've posted below shows Olympic weightlifter Cheryl Haworth doing a traditional clean & jerk).

I've found that shallow water aerobics at my local aquatic center is either painful (because of bouncing movements) or boring (because most of the more challenging or aerobic movements are bouncy), combined with a lack of music to accompany the class.  Additionally, the class doesn't even have its own section of the pool, which means we're bobbing and weaving around the mass of kids either playing around or taking swim lessons (and I have to admit, pool acoustics plus screaming children really make a bad pain day worse).  The kids also use the ramp and stairs as play areas, so it's hard to just get in the pool safely, especially on a day where I'm having trouble walking.

The deep water class has been better, but I know that most of that is because the instructor is allowed to play music during the class, and since I've been both a musician and dancer in my life, music makes most everything at least tolerable.  I still have to be very careful because overly flexible spine means I can pretty easily hurt myself in the water.  I find it really frustrating to have to be so careful, especially since I used to do some pretty wild physical things (like CrossFit and like clocking about 40mph on my racing bike).  Thankfully, the other class participants are awesome, light-hearted, and completely welcoming.

The main bad part to the deep water class is the time:  6:30am.  For those that know me in real life, they know that I'm almost the antithesis of a morning person.  I'm that person that would rather work third shift than get up before 8am.  My now live-in SO is almost worse than me, but that's more of a difference in employment.  I've only gone to two of the deep water classes because of this, but I'm trying to make a concerted effort to at least go often enough that I could make up my own routines when I buy a waterproof mp3 player, an aqua fitness belt, and water dumbbells (an expensive financial investment, especially with the mp3 player).

We'll see how this goes.  I've been pretty mopey about working out lately because I haven't found the right activity that gives me the endorphin rush I used to get.  I'm trying to find the sweet spot between fun, challenging, and doesn't cause me pain or nerve problems.  So far, no luck...but the adventure continues.

Adventures in shopping: Best Buy

I'm a geek at heart, so wandering around an electronics store is pretty fun for me.  I'll ogle the computers, ooh over the fancy cameras (I would love to get a fancy one like this so I can take fancy dance photos of people), wander the aisles of video games (I own an Xbox 350 and a Wii), and anything else that catches my eye.  Well, I was on a bit of a mission today.  First was to look at a new digital camera (sadly not one of the big fancy ones like I linked above, but one to replace my eight year old beastie).  Second was to take a look at a multimedia shelving unit as my DVDs and games have outgrown my little shelf.  I found this one in the Best Buy weekly ad, and thought that it deserved a looksee in person.

So I'm wandering around the store with a basket balanced on my footplate, getting a few odd looks because of the basket.  I silently whine at the cost of the computer with ten gigs of RAM, then head to the digital cameras (looking longingly at the big fancy ones).  I find a camera on clearance that I dig, then traipse through the video games.  I turn my nose up at the Xbox Kinect and its associated games (it's barely accessible to folks who are seated for whatever reason).  I then try to find the shelf, which was in this weird narrow aisle.  I find it, then found out that the box had wheels on the bottom!

Wheels!  On the bottom of the heavy box!!  It was amazing.  I was on wheels, moving furniture unaided because the box also had wheels!  Granted, it was awkward to move it, but I was so thrilled that I could move something that heavy by myself, unaided.  I don't know if I would count that box as an example of universal design, but it was amazing.  I was giggling as I was rolling myself and the shelf to the register.  Customers looked at me, asked if I wanted help, but I turned it down and continued to laugh.  I couldn't tell if the clerk was amused or horrified, but I think it was more amusement when I pointed out the wheels at the bottom of the box.

Fast forward to later this evening, and because of using my wheels for that shopping trip and a trip to WalMart afterwards, I was able to get some housework done.  A good day indeed.

Wheels!

Bela perched on my back circa 2009

So I was having a lazy day off yesterday (I'm on a work rotation that has me working 4 days most of the time), so I decided to have a lazy day where I could sleep in, snuggle with my cats, and lounge around reading a book for fun (this book if you're curious).  UPS knocks on the door, and voila!  A huge Invacare box!

I open it up and begin to unpack.  Wheels wrapped in clingwrap.  Wheel locks packed in bubble wrap.  Chair cushioned with a variety of packing materials.  No cushion, but I wasn't sure if the seller would remember the question I posted on the previous listing on the chair.  A bit of a surprise that the chair is a dark blue and not black like it looked online.  Boxes moved out of my kitchen and I start to put the chair together (since it's a rigid frame, this isn't a big deal at all).

And...it fits.  Since the chair is two inches wider than the transport chair I have, it feels different to roll it.  The center of gravity is in a place where I could actually use it to dance and do active things in (you know, other than rolling around campus and for shopping).  I did my first wheelie and squeed.  I'm wondering if it's a little too wide, but upon further inspection it looks like there may be a little play in the axles to get the wheels closer to the seat.  I'm going to get it outfitted with side guards that keep clothing away from spokes, so when I talk to the medical equipment supply place I'll ask them about the axle.

Now I just have to get someone to help me get it out of my house and into my car (it may only be 20 pounds, but my apartment is inaccessible and I try to not carry things up or down the stairs for fear of falling or making the spine angry).  I also need to get the transport chair out of my car and either into my house or sold.  I really don't forsee needing it or wanting to use it any longer as it's mostly impractical for my lifestyle.

I'm glad that it fits my dimensions pretty darn well.  The seat back is at a height where it's high enough to support my lower back but low enough to not impede movement.  The distance between the seat and footplate is damn near perfect since I don't need a calf strap (and this will make grocery shopping easier).  I really couldn't be happier with the chair....although I do need to admit that the seat width thing has been a concern.

The transport chair is a bit snug, and I remember the medical supply store telling me that you want a chair that's as narrow as possible to put less strain on your shoulders (as shoulders aren't designed for that kind of consistent stress).  I've been worrying about the new chair, wondering if two inches wider will be the ticket with the new chair.  I had diet culture crap circulating in my head because of it, even though I know that diets don't work and generally end up in making a person bigger in the long term (plus making a less healthy body).  I've seen this in my own body.  Not only am I fighting myself, but I'm fighting a culture that thinks that if I would just become thinner, I would become abled.  Before I became involved in the Health At Every Size movement, I actually tried.  I was at my lowest adult weight but still having pain and nerve issues.  I was also less muscular and less healthy, both physically and mentally.

Hopefully having a properly fitting chair will help me find joy in a body that sometimes doesn't feel joyful.  If I can find ways to dance and move that don't put me in tears or cause me to injure myself, I think I win.

Being a former dancer

CONvergence 2009- Yes, post-fracture

I used to be a dancer.  I used to be a belly dancer actually, and I've actually been paid to dance.  I used to be in a troupe.  I was invited to open a show with other dancers.  I've taught people to belly dance.  Used to.

I stopped belly dancing because of my spine.

It was really one of the hardest decisions I've had to make in my life.  Belly dance is my passion (and it doesn't hurt that I was pretty darn good at it).  I'm also pretty damn flexible, as demonstrated by the photo I have posted.  My friend Dave Stagner took this photo in 2009 at CONvergence.  While I managed to dance consistently for a little over a year post-fracture, it became more and more difficult between pain and nerve issues (even when I wasn't being hard-headed and still doing wicked laybacks).

I know folks with other pain issues, like fibromyalgia, manage to continue belly dancing.  Heck, Princess Farhana just wrote a blog about dancing with fibro.  I would love to say if it was "just" pain I would be able to keep dancing, but I have a very vivid memory of a dance class that I went to last summer when I was doing a bit better on the pain front (which still means daily or twice a day pain meds).  I knew better than to actually do the hopping that was in the awesome raks assaya piece that Xavier was teaching.  I did a modified bounce instead, but when I stepped into a movement, a sharp pain raced from my spine to my leg and I was done for the night.  I think that was the last dance class I took actually and that makes me sad

I'm jealous of the folks that can keep dancing despite pain.  Heck, if it was "just" pain, I would probably still be dancing recreationally and possibly doing some local performances.  Part of the problem lies in that the nerves get irritated with the movement of the pelvis and lower spine, and at best I lose feeling in my legs.  The other part is that belly dance is one of the activities that guarantees me problems no matter how I'm feeling that day.  My ITunes library set to random might hit a song that I've danced to before or just has a beat that gets my hips moving...and then my spine is fried for the rest of the day.  It's a hard place to be, feeling stuck in a body that can no longer do something I enjoy and excel at. 

I'm not really sure where this leaves me, in all honesty.  While I've thought about trying to make space for myself as a disabled belly dancer, the nature of my injury/disability really leaves me to upper body movement.  I'm not really sure if I could pull together an entire choreography with that limitation, and if I could, would it be interesting enough to watch?  Would it be more interesting if it was a mixed-ability group choreo (something akin to what AXIS Dance does)?  What does it mean for me as a white cisgendered woman to modify a cultural dance form that is not my own by heritage to fit my dis/ability?

I feel like I'm really left with four options (in no particular order of preference).  One is to do what I've been doing and just not dance.  I have to admit, this option is not a happy option.  I am not content to be only an audience member at a belly dance performance.  The second option is to learn to play the doumbek drum and see if there are local dancers that would be up for some live improv.  The third is to try to adapt belly dance to my body reality.  The fourth is to find a different dance form that has more established mixed-ability options (a la AXIS).  This one is difficult as there aren't any explicitly mixed-ability classes in my area....they're pretty rare.  Since I'm a graduate student, I might be able to find an adventurous dance professor that would let me audit technique courses to try to find my/our own way into integrated dance.

With the accessible dance options, I'm left wondering what to do about rehearsal, choreography and performing.  Do I choreograph for wheelchair use?  Do I essentially do multiple choreography options depending on the level of impairment (something that would be really difficult for a group number)?  What do other dancers with fluctuating impairments do?

As usual, I'm left with more questions than answers...but I'll leave you all with the YouTube video of my first belly dance solo, performed in 2006 :-)

Buying medical equipment on Ebay

The wheelchair I'm bidding on

I started writing this post while the auction was still active, but decided to post it post-auction.  Originally I was leery to post it while it was active.  You might be asking why.  Because it's hard to find a chair that fits my booty, looks sporty, will be able to withstand sporty things, possibly be usable for dance (assuming I can find a teacher or professor willing to take the mixed-ability dance plunge), and is in my budget.

Here's the thing.  Why on earth would someone need to look at buying medical equipment on Ebay?  I crunched the numbers, and here's why I'm taking the risk.  Assuming that my insurance will even pay the 80% that the policy book says they will, I have to jump through a number of hoops to get them to pay it.  I have the prescription in hand, so that's the first major step.  Next was to figure out which supplier of "durable medical equipment" (or DME) were on my insurer's list of providers.  The next one, according to the DME supplier, is to make an appointment with a physical therapist for a proper fitting, an appointment that a rep from the DME supplier needs to be at.  My insurer doesn't cover physical therapy, and I failed out of PT a long time ago, so I don't have a current relationship with a PT that I know and trust (which is something I find to be a big deal).

So from here, I'm already paying a good chunk of money just to have someone day "yes, I agree she needs a wheelchair" and to have them measure my butt (I know, there's more to it than that).  Next adventure really involves a dance between the DME supplier, my clinic, and the insurer...a dance that normally takes two or more months, and probably some rejections and appeals.  Assuming that they say yes, I still have a deductible to pay, and then my 20%.  When all is said and done, that's a lot of time and money being bounced around while I have a lot of people that don't know me validate my status as a disabled person.  A lot of people that may decide that since I'm fat and disabled may just say "lose weight and your nerve problems will magically disappear" (statistically untrue, by the way).

BTW, for a really detailed list of the steps it takes to get a chair, check out UsersFirst Mobility Map.  It's an amazing resource.  It also demonstrates how complicated this process is.

Me on my bike on the MS 150, 2007 & pre-injury

So I've been looking on Ebay for wheels, and finally found a chair that should fit.  If it doesn't, I'll "rEbay" it (a term I coined last night while talking to my SO.  It's a risk, and a decently expensive one.  This char costs as much as my beloved triathlon bike (that I can't bring myself to sell because of the good memories we've had...see the look of determination in the photo on the right?).  I suppose being able to compare the price of the chair, which is made by a company that produces sports chairs, to the price of a fancy bike is allowing me to not balk at the cost as much.  At least that's my excuse at the moment.

And now?  That chair above has been paid for and will hopefully be shipped soon.  I've never made a Paypal transaction of that size before, and I'm thankful that I have money in my savings account to make this happen, especially on a day where I'm having trouble even walking around my office because of pain.  Here's hoping that it works and that my measurements are good :-)

Graduated!

I'm having one of those days where I can't recall what I've said here thus far, so please forgive me if anything is redundant.  I'm avoiding pain medication as I'm leaving my office shortly, and I don't drive under the influence (even though there are days where I might be safer driving with medication than with pain, but laws are laws).

So this past Friday I graduated with my masters degree in Women's and Gender Studies.  I was a bit worried about my ability to walk at the ceremony, but I somehow managed...even though it almost gave out at the end while trying to get back to my car.  There were so many things in the physical building and in the ceremony structure that were so inaccessible that it was frustrating.  Stairs to the floor of the stadium, narrow aisles between seats that made it hard to walk with my cane (or even walk for the students that weren't very thin), hard seats that were jammed next to each other, not being able to see the platform because of the height of the platform, the stairs to the platform (irrelevant for me as my institution only has doctoral candidates cross the stage)...the list goes on.

In hindsight, I should have used the transport chair I have (it's this model in green...got it on a good sale), but the number of "special" accommodations that would have had to occur to make that happen were numerous.  My line would have likely either rerouted or I wouldn't have been able to be with my fellow masters graduates.  I either would have been put at the end of an established row without chairs moved (making me not fit in the block of bodies) or someone would have had to move a chair mid-processional as we don't do a rehearsal walk-through or have assigned seats.  Same issues getting out...either would have had my own special route or the line would have to be moved.

Universal design for the win, y'all.  Even folks without disabilities benefit from accessibility.  The young women wearing the six inch heels (not kidding...wow) or any number of slippy shoe issues.  Or the nervousness of a big ceremony with lots of people.  Or any number of reasons that stairs can be bad, or that sardine-packed seating can be bad (that much body heat all packed into one area for instance).

Anyhow, next adventure, PhD :-)

Unwanted advice

Last Monday evening I finally took the plunge into water aerobics.  I've been pretty resistant to the idea for a while because it's always something that comes up when well meaning people want to try to make me feel better and fix my spine.  When an injury is new and hasn't migrated into the land of disability, some of this stuff can be helpful.  Maybe someone hasn't heard that water aerobics can be a good gentle form of exercise.  If yoga is suggested, maybe the person dismissed it thinking you have to be extremely flexible to do it.  Insert other form of exercise or therapy, and maybe that suggestion will give the newly injured person an idea that may genuinely help them.  I get that.

However, when the injury is chronic, this advice can be annoying at best, potentially patronizing, and sometimes downright offensive.  I know people generally mean well, but please trust me when I tell you that I've tried physical therapy and it didn't help, that belly dance actively aggravates the nerves in my spine, and that the structural instability in my spine makes swimming really painful.  Telling me about the wonders of acupuncture can show a class or income divide (if anyone wants to donate money for me to try acupuncture, I'll totally give it a go!).  Please trust me when I tell you I've tried damn near everything and please let me deal with my injury/disability in the way I find best for my body, my life, and my circumstances.

Back on track though, I managed to piss my spine off royally doing water aerobics.  I didn't pay attention to the weird feeling I got when I was doing the shallow water (4ft deep) running, and was almost in tears at the end of it because of a combination of pain, numbness in my legs, and an emotion akin to humiliation that I had "failed" another "good for bad backs" exercise option.  I then had to deal with a well-meaning instructor who also held the belief that water aerobics was good for people in my injury category....and me, being the good U.S. Midwestern person I am, just nodded and smiled, and hoped that I could limp to the locker room quickly before I started to cry.

I know people don't give advice out of malice (usually...weight loss advice to fat folks is many times malicious and condescending, so there are exceptions to every rule), but please, just offer support.  On the same vein, my spine has been broken for five years, so saying that you hope I feel better feels awful.  Some days I'm better, some days I'm worse, some days I'm in more pain and having less nerve issues, some days vice versa.  Some days I know when a certain activity will make my spine unhappy, and on some days just living makes it worse.  Chronic pain and neurological issues can feel like a random rollercoaster....and while there is a "better," it's usually not a predictable state.  Like I said, I know that folks mean well...but how about a nice "I'm happy to see you" and "take care/see you later"?

Adventures in insurance

I got up early before work to call both my insurance company (who never emailed me back a few days ago) and to call companies that sell wheelchairs.  Found a company that is listed on my insurance company's list, and now I have to wait for their customer service person to call me back with the exact steps I need to follow to see if my university's insurance company might pay for it.  Good grief.  It's not like wheelchairs are an awesome fashion statement...I just want to be able to get around campus, go grocery shopping, and not have to drive to campus.  Heck, there are some days where I can barely get from the handicap parking to my office without my spine feeling like it was gnawed on by a baby tiger.

I am literally about ready to just buy a chair off Ebay.  Since I've used crummy hospital-like chairs ("hospital clunkers" as AskAWheeler puts it) , I know approximately what size I would need.  The problem is that there are tons and tons of options out there, and things that other wheelchair users needs may be things I either don't need or don't want as a partially ambulatory person.  For instance, a movable footplate would allow me to put it down when my feet are being useless or put it up when my feet are cooperating some so I can use them to scoot around with a coffee in my hand.

Now that I know what my deductible is, I may be better off getting it myself, even with possible fit problems.  I found a Top End Crossfire (Top End is a sports chair company, although this model is a general purpose chair) on Ebay for a good deal less and some options that drive the MSRP up significantly.  Seat is the right size, the back isn't too high (the higher the back, the harder it can be to push if you're little like me), and the footplate is adjustable height in a range that my legs actually hit.  The plate isn't removable though, and it's lacking the clothing guards that I'd prefer to keep my shirts from getting stuck in the wheels.

So now I wait for United Seating and Mobility to call me back to see what sort of insurance dance might be ahead of me.  I may need to have a physical therapy seating & mobility evaluation, which will likely cost a good chunk of money out of pocket.  We'll see what happens...

Ambivalence

Definition of AMBIVALENCE

1.: simultaneous and contradictory attitudes or feelings (as attraction and repulsion) toward an object, person, or action

2.a : continual fluctuation (as between one thing and its opposite) b : uncertainty as to which approach to follow 

from Merriam-Webster.com

 Today is Blogging Against Disablism Day, which is interesting timing with the start of this blog project.  So why the connection between BADD and the definition of ambivalence?  Well, my journey to becoming a part-time wheelchair user has been filled with both definitions of ambivalence.  I am attracted to the idea of being able to navigate my environment without worrying about falling, worrying about how long it takes me to get from one campus building or another (and comparing it to how quickly I used to be able to get to and fro), and attracted to the idea that I might be able to find sport and dance opportunities in the body I have now (instead of praying for some sort of treatment or cure that will probably either be contraindicated with my congenital disabilities or just worsen the current issues).

On the flip side of this coin lies my worries.  I study physical activity in graduate school, and I worry about how people will perceive my disability.  I worry about the comments that will come about how some days I need wheels to get around and some days I can hobble along.  I worry about the intersection of my disability with my fat body, and worry about the fatphobia that many times intersects with ableism.  I worry about comments from my fellow students in kinesiology and health about how if I "can" walk I should walk because of bone density (something that is even more important with my pituitary dwarfism).  I worry about dealing with how barely accessible my campus is for people who are disabled (but I also delight in not having to make the cost-benefit analysis I have to make with my cane or walking stick...walk extra far to take the ramp and not risk tripping up stairs, but wear out my spine, or take the stairs and risk a really big fall).

I've been struggling with this for a while honestly, but I knew in my heart that my mental health depended on being able to navigate my environment quickly, and the way to do that was with a manual wheelchair.  My internal ableism has fed my embarrassment about how slowly I ambulate, how awkward my gate is, and how I sometimes have to watch my feet to make sure they do what my brain told them.  I'm a physical person, and I need to be able to ~move~ ~wiggle~ ~pace~ ~zoom~ to be mentally healthy, not to mention to counteract the sedentary behavior that has been slipping into my previously very active lifestyle.

This afternoon my prescription arrived, and tomorrow I'm going to the medical supply store to get fitted.  I'm still worried about what others will think about my decision, but knowing that wheels will make me mobile reinforces that I won't be "wheelchair bound" nor "confined to a wheelchair," but FREED by a wheelchair.

New blog, not really an old journey

Welcome to this new writing adventure of mine.  While this project new, this topic isn't anything new for me.  I tend to define myself by a lot of things that I used to do.  I used to belly dance semi-professionally.  I used to hoop dance, take West African dance, do triathlons, participate in charity endurance cycling, take mixed martial arts classes, do CrossFit...I'm a very physical and physically active person.  I'm also a lifelong fat person, something that no amount of exercise has ever changed that significantly...I just come from "good sturdy genes."  I've also been known to push through despite pain and injuries (because that's how athletes usually roll!).  Speaking of pain and injury...

I broke my L5 vertebra in late 2007 and because of preexisting L5/S1 spondylolysthesis (vertebral slip) it wasn't discovered until early 2008.  The disc between these two vertebra has also degenerated, so I have a lovely mess in that one little joint.  When the fracture was discovered, I did what a good patient does, particularly a good dancer-athlete-patient, and followed my doctor's advice.  I did physical therapy.  Despite a clinic that was marketed as catering to athletes, the physical therapists didn't know what to do with a belly dancer.  I have pretty amazing body awareness in my torso because of dance and this caused me to "fail" out of physical therapy because I was already doing the "right things" for my injury.

Because of this failure, I've been dealing with long-term pain management care.  I've decided against the only surgical option that currently exists, which is spinal fusion.  A large part of this decision is related to the pretty abysmal success rate of spinal fusion, which is complicated by some unique physiology I was born with (the short story is my pituitary gland didn't form all the way, so I'm a pituitary dwarf with other hormone deficiencies).  Long-term pain management is a strange place to exist in.  It means that I've been on prescription pain medication since 2008 and I've tried an epidural injection to try to help.  Sadly, the injection didn't help and I've been on my current regime of Vicodin (a narcotic) and Flexeril (a muscle relaxant) since 2010.

I've been following my orthopedic nurse practitioner's advice by staying as active as I can despite pain and other symptoms (something I would have done anyhow...I love being active).  I stopped belly dancing in 2011 despite many attempts to keep at it, but it is one of the activities that guarantees pain and numbness in my legs.  Because of structural instability, even gentle and "good for bad back" exercise hurts me.  Honestly, if it was just pain, I would be able to push through to do the activities I love (I did slightly modified CrossFit post-fracture, before I tore cartilage in my knee).  I'm now at a point where I have too much numbness in my legs and literally have to watch my feet when I walk because my proprioception is wonky.  I'm also really wobbly and have had some falls, along with a scary near-fall in a busy shopping center parking lot.

So that puts me here now.  I had a heart-to-heart with my NP and I'm soon to become a part-time wheelchair user so I can get around more safely (and more efficiently).  I've owned a cheap wheelchair that I use in a pinch to go grocery shopping or to wander the mall when I'm having a bad mobility day, but now that I'm at the point where I need wheels more consistently, I'm trying to get my insurance to pay for a lighter weight manual chair that I can use for getting around campus and hopefully getting into some adaptive sports and dance opportunities.  I'm trying to get my insurance to cover it, but as a brand new PhD student with crummy student insurance, I'm not sure how much the insurance company will help, or how much hell they're going to give me to cover it.  It may end up being a completely out-of-pocket expense, which if that happens, it will mean selling my beloved triathlon bike (that I haven't been able to use for a couple years but I've not wanted to sell in hopes that I got better).

So, there's the groundwork for this journey.  It'll be an adventure in emotions, cultural perceptions, political and educational systems, and interpersonal dynamics.  I'll warn you all that I'm a budding academic with a brand-new shiny masters degree and going on to a doctoral program in sociohistorical studies in kinesiology (I study how culture, gender, disability, body size, and identity impact how people move, exercise, do sports, & dance).  Feel free to let me know in the comments if something doesn't make sense...I'll also try to link to things that make some concepts clearer.

Welcome to this space!
~Casey