Access in feminist scholarly spaces

Silly selfie sitting next to my wheels

Last month I was at the National Women's Studies Association annual conference in Cincinnati, Ohio.  I've been to the conference four times now, thanks to one of my masters department professors letting me know about a call for papers in 2010.  As a co-chair of an interest group of the organization, I have to go whether or not I'm presenting a paper or moderating a panel.  This year was one of my "multiple hats" years, with co-chair duties, co-presenting a workshop, moderating a panel, and presenting a my own paper.  So off to Cincinnati I went for my annual gathering of scholarly feminist type people.

Photo description: A selfie taken sitting on the floor next to my wheelchair. The black cushion & back tire with thin spokes are in the foreground, with the rosy cheeked, bespectacled, auburn haired author in the background smiling.

Because of the cost of this conference and the lack of funding available at my institution to get to events like this (which, for people who want to become professors and work in academe, these conferences are required to get a job after graduation), I decided to drive from North Carolina to Cincinnati, Ohio.  Without stops, the drive takes about 7.5 hours according to Google Maps.  With the hourly stops my spine requires of me, this became a really long venture.  The perk was that I could pick what assistive devices I wanted when I wanted them.  I wasn't stuck with only crutches, or only my wheelchair.  This gave me some freedom....and it came in handy because the elevation changes from driving through the Appalachians resulted in less-than-fully inflated tires on my wheelchair (with no good way of inflating them without hunting down a medical supply store or bike shop).

I can't get to the first floor! Ack!

While my transportation afforded me some choices, the conference is notoriously barely accessible for a variety of reasons.  The past years' conferences were held at a hotel convention center.  This year it was at the Duke Energy Convention Center with a separate official hotel (I stayed in a nearby town with Amanda of FatBodyPolitics and another scholar from Texas, & commuted to the conference).  This place was hell as a gimpy person.  The first day we attended we had trouble finding the one accessible entrance (I used my wheelchair).  We then had issues with elevators only going to certain floors, with all the elevators really far from each other.  Also, thick carpet...evil, evil thick carpet.  Add to that bad signage and last minute schedule changes (like a change of time for the Disability Studies Interest Group meeting between the program, the webpage, and the app.....that was complete and utter access fail). I made due with the company of other rad scholars (feminist pool party!!), but it felt like an epic pile of microaggressions.

Photo description: A photo of an elevator button panel. The sign above says "Duke Energy Convention Center" with descriptions for levels 2 & 3. Below are buttons showing options for the second (main) floor, the third floor, DH (unknown location), and open, close, and alarm.

I should make an art book with my crutch

Saturday I decided that my tires were just too flat to use even though I was having a bad pain day.  I really realized how bad the distance between different meeting rooms was that day.  The disability related panels were on one end, the fat studies ones in another area, with access to the exhibition hall and food/sustenance in another.  Because of this, I ended up taking pain medication and found it really difficult to be a functional academic on the day that I really needed to be "on the ball" (with the workshop, moderating, and presenting in the same afternoon).  My paper was in the last panel of the evening from 5:25-6:50pm....while a concert was doing a soundcheck nearby, while a grad student social was going on, in a strange corridor that people had trouble finding....if it wasn't for the awesome response I received for my paper (an autoethnographic work about my experiences as a fat spine fusion patient), I would have seriously considered quitting my involvement with the organization.  Thankfully a bunch of us had a lovely dinner together that made me realize how much I value these kinds of scholarly gatherings (including one scholar and I reminiscing together about life in Northern Minnesota, as both of us are studying elsewhere).

Photo description: a bronze forearm crutch with a rainbow dyed rose propped on it. They are leaning on a brown wood countertop. The roses were in a vase that said "take one" (not shown).

Sunday was a short conference day, so thankfully less eventful.  A couple panels then going through the exhibition hall (a lot of publishers and organizations advertise their scholarly wares in there...most of the organizations don't set up on Sunday though, but most of the publishers offer book sales on display copies).  I had a long drive home that day, so I tried to walk as much as I could....although overdid it because of the books & talking with my hotel roommates (it was like scholar slumber party all weekend and none of us got sufficient sleep.  I regret nothing!).  I warned my partner that I was overdoing it and may need to stop somewhere to either nap or get a hotel room.  Thankfully I made it home in one piece despite being afraid to drive in the mountains at night, but copious amounts of caffeine plus the Honor Harrington audiobook got me back home.

There's my belated conference post.  The TL:DR is that feminist conference spaces need some serious work in accessibility.

Nerdlyweded!

Yes, the title of this post is another portmanteau (nerd + newlywed = nerdlywed)...I'm a scholar and those of us in sociology and cultural studies tend to me full of them.  So I'll apologize for my blogging absence of late because my December went from finals week to my nerdy wedding.

Post-wedding selfie in the hotel room

One week ago, I married my partner and best friend in Las Vegas, Nevada on Friday, December 13th.  I know that the date may seem odd, but I am the person who has had some incredibly neat things happen to me on various Friday the Thirteenths (heck, I even have a tattoo with a shamrock and the number 13 on one of my legs).  It was also hearkened to the struggles he and I have been through, and that our relationship has been forged through fire (mostly grad school and spine surgery).

Photo description: A self-photo taken in a hotel bathroom showing a fair-skinned, red-headed woman with plastic framed glasses. Her hair is shoulder length with some of the hair pulled back, dangling earrings, and makeup. She has an olive green drape covering her shoulders and torso, & is holding an iPhone with a Starfleet logo and a Royal Manticoran Navy sticker

The Las Vegas part of the wedding was my partner's idea.  After I proposed, I asked him if he had anything he'd always wanted for his wedding.  He told me that he wanted to get married in Las Vegas by Elvis.  With a little research and discussion, we found a chapel that had a variety of theme weddings....including an intergalactic wedding (the Viva Las Vegas Wedding Chapel).  Since we're both geeks, we decided we may as well make this as fun and campy as possible (especially combined with my constantly uncertain.  I had no interest in wearing a wedding dress, so we wore outfits from our original intergalactic fandoms.  I wore a Starfleet uniform from Star Trek: Deep Space Nine with the officer's pips for Lieutenant Commander (my rank in the Royal Manticoran Navy fan organization) and he wore Mandalorian bounty hunter armor that he created from Star Wars.

We had both of our immediate families meet us in Las Vegas and it was absolutely fantastic.  Because the chapel broadcasts all of their weddings on their webpage, we were able to share the link to the ceremony with friends and family that couldn't attend for various reasons.  Even better, my parents agreed to pay to have the wedding stay on the chapel's webpage so even more people could virtually attend & celebrate with us when they were able!

Our view from the Excalibur hotel room

Photo description: A snapshot from our room on the 22nd floor of the Excalibur Hotel & Casino. Several brightly lit buildings of the Las Vegas Strip are shown as well as the red sign of the Excalibur.

As I recover from the trip, I'll write more about the trip....but we still have a local reception to plan for (details will be on our wedding site for local folks to attend).  I will also have a "Flying While Gimpy" post (I didn't fly with my wheels, just with forearm crutches).  I'll also post some about access issues I had in Vegas as a part of the User Friendly Vegas project from Pattie (my first guest blogger).  I'm trying to break up the trip by topic instead of giving you all a play-by-play of our five days of travel!

If anyone wants me to write about anything in particular, let me know!

Apologies

My crutch plus a rainbow rose

I just wanted to say that I apologize for the huge gaps in this blog.  I have ten posts, all unfinished, in the hopper but I can't get the right combination of time and energy to finish them (like the Gen Con post, or the post about going to National Women's Studies in November, or thanksgiving).  I've been incredibly busy and would love to tell you folks how it's all going....but I just am struggling right now!

With my GP (and not much help from my pain management doctor, sadly), we're trying to figure out why my energy level has tanked, why I'm having trouble with my short term memory and reading comprehension (which is a particularly hellish symptom in grad school), and why I still am sleeping like garbage despite how exhausted I am all the time (improperly treated pain plus untreated narcolepsy is my current guess).  I had a medial branch block series of injections yesterday that is supposed to help narrow down the nerve problems I'm having post-spinal fusion (we'll see what happens with that....I'll blog about that experience once I clear finals + my wedding).  On top of all that (plus the financial mess that makes because of the American Medical Industrial Complex).

Hopefully I'll clean up a post every couple days now that the semester is wrapping up...although I am still working on incomplete coursework from last year (because of surgery and not being able to take a leave of absence due to financial reasons).  Thanks for your patience!

Photo description: A bronze and black forearm crutch laying against a light and medium wooden desk.  A rose with rainbow petals is propped on the crutch.

30th anniversary of Shadow on a Tightrope

This post was actually supposed to be posted on November 8th, the actual 30th anniversary of the book, but I was in Cincinnati, Ohio at the National Women's Studies Association annual conference (which I will blog about in a day or two).  This is a part of a blog carnival being hosted in celebration of the anniversary.

As someone who has been aware of fat acceptance since my girlfriend at the time introduced me to Marilyn Wann's Fat!So? book around 1999, I thought I was pretty aware of a lot of the history of the movement.  I wouldn't say that I was an activist at the time, but it opened my mind to many possibilities to stop waging a war against my body that never started out as "normal."

When I began my masters degree program in 2009, I took the scholarly leap into fat studies with a paper I wrote for my feminist theory class.  I was fairly ignorant of a lot of things that happened in fat history until I started digging deeper and deeper in my classwork and my conference presentations.

In 2011, I presented a paper at the NWSA conference that talked about fat athleticism and dance, and connected writings by fat folks online to my Youtube dance video.  It prompted my culminating project that involved a more thorough search for published writing on fat physical activity as a whole, but more specifically on fat dance.  I found Shadow on a Tightrope while trying to get my hands on any published work that either referenced fat dance or had personal or creative work on what it was like to be a fat dancer.  I was thrilled as this seemed to be the first book that had published stories on fat women in motion (if someone finds earlier work, please let me know!).

My used and loved copy of the book

I still remember finding a battered used copy and the book and smiling when it arrived in the mail.  It looked like the previous owner probably loved it dearly.  Reading the stories of other fat bodies in motion, seeing how similar some of the stories are to the stories I hear about today's fat bodies in motion....this is a powerful work that gets at so many parts of fat existence!

If you've never read this timeless book, I highly recommend picking up a copy.  Aunt Lute has kept this book in print and so many of the stories are still very relevant to a variety of fat experiences (I also highly recommend picking up a copy at a feminist bookstore like Charis Books in Atlanta...there are very few of these treasured spaces left in the United States!).

Photo description: A black seat with a cream colored book on top of a white take-out box.  The book says "shadow on a tightrope" in a large font with a sketch of a fat female-appearing face, with "writings by women on fat oppression" underneath and the editors names at the bottom.

NWSA 2013 Fat Studies panels, papers, & events

It's less than one week away from the National Women's Studies Association annual meeting, this year in Cincinnati, Ohio, USA from November 7-10th, 2013.  For those of you that are attending, I have the fat studies related panels, papers, and events posted here for your perusal (I'm a co-chair of the Fat Studies special interest group, so it's my duty to let people know what's happening in this corner of the scholarly woods).

Friday, November 8th:
5:25pm-6:50: Fat Studies Interest Group meeting (network with fellow scholars!), Room 209

Saturday, November 9th:
12:55pm-2:10: Fat Studies in the Women's and Gender Studies Classroom, Room 202-AV

4pm-5:15: Fashioning Fat Fashion, Room 263

5:25pm-6:50: Fat Positivity and Embodied Experiences, Room 263

Sunday, November 10th:
8am-9:15: Theorizing Fatness, Embodiment, Subjectivity, and Identity, Room 204-AV

We will likely be organizing a dinner get-together either after the interest group meeting on Friday or the last panel on Saturday.

~Casey

Not in polite society...but I'm going to talk about it

There is a part of surgery recovery that I never talked about because it's just not something that "good" people talk about in polite society.  It refers to something that some body scholars call "leaky bodies"....and I'm going to talk about my own "leaky body."  I'm also going to tie this with a Crowdtap sample that I received from Cottonelle.

I hadn't seriously considered how a mundane activity like using the bathroom would change.  I read forums on Spine-Health and read about gadgets for extending a person's reach with toilet paper...but it wasn't until the day after surgery, until the nurse took out the catheter, that the "no bending or twisting" rule really connected to the toilet.

As a fat dwarf that had just had spine surgery, there is no way to clean up without bending or twisting...without either mechanical or human help.  It's also absolutely exhausting, complicated by the side effects of anesthesia plus pain medications plus difficulty in physically moving (did you know that physical activity helps keep your digestion going smoothly?  It does...especially with bending and twisting the torso).  Once the occupational therapist armed me with a long set of tongs that I could hold a wad of toilet paper, life got a little better.  Once I figured out how much flushable wet wipes could help, life was better.

Some of the folks in the Spine-Health forum suggested wet wipes for washing their body until the surgeon cleared them for showering, but I quickly realized that flushable wipes would help my poor recovering body feel clean more quickly.  The also worked better with the bathroom tongs as one wipe wrapped around the tongs just enough to be secure yet come off easily without touching it.

When I had the opportunity to do a Sample and Share for Cottonelle's flushable cleansing cloths, I jumped at it because of how much better my recovery was because of a simple product.  It helped that I could get an "adaptive aid" from any store that sold toilet paper, and the fact that this product is being marketed to the normative leaky body (because we all create bodily waste).  It feels like an attempt at universal design for the toilet.

In short, they've made a product that really made my recovery experience easier.  Good job!

Cyborg Dance Projekt: Right Left Right

Dance costume selfie with a troupemate's bra

Photo description: Overhead yellowish lighting with yellow walls and a brown doorframe in the background.  In the foreground is a fat pale woman with red hair pulled back, green plastic glasses, wearing a teal v-neck choli and a red velvet bellydance bra with cowrie shells around the bustline.  The combination of a decorated bra over a choli is typical of costuming in American Tribal Style® bellydance.

I'm going to stop numbering the Projekt weeks since I've pretty much cleared the three month mark (especially because my school/work load has been keeping me way too busy to blog consistently).  Honestly, I never thought I would get this far, or have it go this well.  I do have to admit that even though it's going well, it could be argued that 1) dancing is still causing nerve problems so I shouldn't be doing this, and 2) dancing wipes me out in ways that force me to continue using various adaptive aids (I don't generally dance with the crutch, but I use it all of the time outside the house unless I'm using my wheelchair...I still can't walk more than a block without issues).  Call it stubbornness, but I'm going to keep dancing as much as I can!


That stubbornness has paid off.  A couple Sundays ago as I went to the studio to do my work-study (that's how I can afford to dance with my medical bills), I was invited to join Helix, the studio's ATS® student troupe.  I was so happy to be invited for a bunch of reasons.  The first was that I really wanted the sense of community and siblinghood that being in a troupe can give.  As an introvert, I sometimes have internal freakouts about whether or not people actually like my presence or if I'm being intrusive when I try to be social.  The second was that since I've been dancing for about ten years (granted, not as much when my spine got really bad...but dance was still in my heart and soul) and had been paid and asked to perform for shows, I felt uncomfortable with being in a student troupe for cabaret or fusion bellydance....but with the unique group improv format of ATS® and my relative inexperience in the style (one summer in San Francisco with FatChanceBellyDance plus another trip plus dabbling) made the "student" status a perfectly fine fit.

Hm, I realize that might sound bad or like I'm creating some sort of hierarchy of shimmies or something.  It's just that I've taught and been paid to dance, and the teachers & more experienced dancers at the studio that dance with the student troupes are generally considered "guest artists."  My old troupe treated me really poorly because of my semi-pro dance experience, so I feel like I have to try to assert my worth as someone that's been doing this and doing it well for a decade (introvert problems perhaps?).  I would love to dance whenever and wherever I can, with whomever wants to dance with me because in the end, I love dancing WITH people versus being a soloist.

Anyhow, paranoid introvert rambling aside, my first performance is tomorrow!  I do have to work to get a few pieces of costuming together.  This style usually involves pantaloons, a big poufy skirt (10-25 yard bottom hem) over that, belts or scarves over that for the lower body, with a choli as a base on the upper body with a decorated bra over the choli (see self-photo of the choli with a decorated bra), plus makeup and a "hair garden" with fake flowers.  I already had a couple pairs of pantaloons, a couple cholis, and skirts.  I'm borrowing a decorated bra from a troupemate as I don't have time to decorate my own right now.  I need to find my pretty shawls that are hiding in the house along with the jewelry and hair flowers that I've collected over the years.

I'm excited but a little nervous.  My balance isn't getting much better, so I'm a little worried about falling on stage...but I think my troupemates understand my limitations and are just happy that we get to dance together. *grin*  If anyone takes photos, I'll post them for you all to see!

Nine Month Cyborg Birthday

My during-op hardware x-rays

Photo description: the photo on the right is an x-ray with two circular places.  The top one shows the back view of several vertebra, two of which have screws and rods connecting them together.  The bottom one is a side view where the length of the screws are more visible.

Today is October 16th....it's been nine months since I had two of my vertebra fused.  It's been a hell of a ride, and it's not done.  The true baseline impact of this surgery won't be really known until the 1-1.5 year mark.

There are some things that are going really well.  I have dance back in my life, even though I have to modify the hell out of it sometimes (I cannot drive any movements with my glutes, which is pretty darn difficult).  My nerve pain is down thanks to an upped dose of nortriptyline (an antidepressant that calms nerve pain for some people), so I don't get muscle spasms nearly as often and I don't feel like I'm being stabbed in the legs constantly.

I'm frustrated that I still can't walk for more than ten minutes....even though I can sometimes dance for 2 hours.  I have a feeling that this is related to the glute issue that causes nerve pain, as my personal post-op dance posture requires a pretty intense tuck in my pelvis and it's extremely hard for me to walk like that.  I'm not frustrated by my need to sometimes use a wheelchair though....the freedom that it has given me on bad days and the pain it has saved me on not-so-bad days has been a relief.  It's also given me a chance to be speedy and playful, makes me feel strong when my muscles ache from pushing a good distance (like at Gen Con or at the Mall of America).  The upright dancer but sometimes wheeler status feels weird and gets me some odd looks sometimes, but it's a balancing game that I play to keep my passion moving.

Also, I'm frustrated by my continued need for narcotic pain medication.  Really really frustrated.  These medications make it hard for me to function as a scholar and make me continually question my career path.  To be semi-functional in life (to dance, to work, to game, to be a student), requires me to take them....and to continually fight breakthrough pain and the brain fog that comes with them.  Sometimes I wonder if the benefit of taking them is worth it, but I really feel like I have no option.  The "option" would be to quit everything and try to get in the Social Security Disability system....but I would rather avoid the enforced poverty, the constant fear of paying my bills, and wondering if I can ever have a life worth living with the incredibly low income cap.

I really have to look back at the past year to realize that I'm doing better, even though I realize that I'm really at the same point a year and a half ago, wondering if I should have surgery.  Even though I'm better, my spine feels like a ticking time bomb right now, just waiting for the next joint up to fail.  I'm just trying to do what I can with what I have at this point....and remind myself that at least I have dance back in my life because of the fusion!

100th post!

Giant duckie in honor of the 100th blog post milestone!  Why?  Just because I'm silly!

Photo description: an outdoor water scene, probably a harbor with a big city in the background. In the foreground is a giant inflatable yellow duckie, like a rubber duck that one would put in a bathtub.  It is surrounded by orange and yellow round buoys.

I know the last post was a bit of a rant (and freakishly timely with the US government shutdown over the "healthcare" situation int his country), so I want to celebrate this blog's 100 post landmark with something silly....a huge inflatable rubber ducky....just because I love duckies and collect them. (I don't have the photo citation, but if someone finds that, let me know and I'll post it).

Thanks for reading and following!
~Casey

Health insurance is neither healthy nor insures health

My HumatroPen...growth hormone injection pen device

Photo description: A green plastic case with grey lining, holding a white and lime green cap, two pen injection needles in sterile packaging, and the pen device that is white & lime green with a dial on the right and the orange and clear medication vial on the left side.

I was so happy a couple weeks ago that my endocrinologist's office finally got in gear and responded to one of the drug companies' patient assistance programs.  A representative from Eli Lilly worked with me to get set up on my growth hormone replacement while they worked with my insurance (for free!).  The case worker would call me when more information was available as Blue Cross Blue Shield of North Carolina would not tell her which type of synthetic growth hormone was in their formulary.  It was amazing, I was hopeful....until I get a series of weird phone calls that hinted that not all was well in pituitary medicationland.

My campus pharmacy called on Wednesday telling me that a medication was called in and they wanted to know what to do with it...but couldn't tell me in a voice mail which medication they were referring to or which doctor called it in.  Thursday morning I received a voice mail from my endo's office saying that they called in a prescription for Omnitrope (a different drug company's medication....I was initially prescribed Humatrope from Eli Lilly).  Today I get a call from the representative at Eli Lilly that my insurance won't cover Humatrope and I will be dropped from their medication program.

A corporation, in this case an insurance company, should not be able to tell my doctor what medication I should be put on.  If they want to go that route, they need to be transparent about what they will or won't cover.  I should not have my health screwed up like this.  This is medication that will likely have a copay beyond what I can afford (my current monthly health expenses are 25% of my paycheck....that doesn't include making payments for my surgery, or any of my doctors to hit my deductible).

The sad part?  Somehow this is still "affordable" according to ORomneyCare (the Affordable Care Act was initially Romney's idea, not President Obama's).  Somehow, I need to treat my body like my car (something that I have to insure to be able to use), but I don't get to choose whether or not I have a body, or what kind of body.  I didn't choose this clunker, but I do have to live with it.  I treat this clunker as well as I can with what I have, and while I don't tend to love my body, it's the only one I have.  Want to know what's more broken than this body?  The United State "healthcare" system.

Back in physical therapy

My foot, my dumbbell

Photo description: brown carpet in the background, a pale short and wide foot with green nailpolish stepping on a grey dumbbell marked with "15" for its weight.

Because my new pain management doctor doesn't believe me that I'm taking three or more dance classes a week (and therefore meeting the current recommendations for physical activity according to the US government), I consented to going back to physical therapy, with the caveat that it had to be aquatic PT (I miss lap swimming, and my last pool adventure over the summer was a minor disaster pain-wise as the water pressure alone hurt).  Despite knowing he's being a fatphobic jerk, he's the first doctor that has taken me seriously about my desire to be on something other than opioids but realizing that opioids are the meds that are getting me through life right now.

A couple weeks ago, I had my PT evaluation with the new clinic (my old one doesn't have pool access).  I decided to wear my department t-shirt with the university logo and "KINESIOLOGY" in large letters, along with comfy drawstring shorts and my trusty sneakers.  PT evaluations almost always involve being touched in various ways to see how joints move (or don't move), to see what hurts with what kind of pressure, to test strengths, weaknesses, or imbalances, and sometimes end with heat, ice, or some other soothing modality (because if you're in need of PT, these evaluations almost always cause pain or other problems).

Since I've been through physical therapy quite a few times in my life (three times just for my spine fracture & vertebra slip), I have certain requirements that need to be met to deal with a PT.  First of all, my weight (if mentioned at all) needs to be addressed in a weight-neutral manner.  I have a history of disordered eating.  Yes, fatness is correlated with various biomechanical issues, but so is being tall, so is bone structure, so is age.  For the vast majority of people, weight is not modifiable.  The only thing dieting has ever done to me is make me unhealthy and bigger than had I just left my body alone.  Besides, people of all sizes get injured and disabled....so just treat me like a person with an injury or disability!

My second requirement is an acknowledgement of my desire to be active.  This is why I tend to go to appointments in my department's tshirt, a shirt from a triathlon or 5k, or a dance related shirt (like one of my Bellydance Superstars show shirts).  I want to be clear....physical activity isn't something that magically makes me a good fattie or some sort of supercrip.  I just have found that if I don't show proof of my prior activity status, I don't get treated seriously (I had a PT not believe that I was active at one point, despite my involvement in a dance troupe and dancing from 15-20 hours a week on top of my full time job).

Lastly, compassion.  The combination of my love of being in motion and being a people-pleasing introvert means I will push to far at least once...and I will struggle to the point of tears and panic to tell the PT or PTA that I've gone too far.  There are a lot of things that my body can do that I shouldn't do (like impinging my sciatic nerve), but I still do them in the attempt at getting praise and being treated as a "treatment compliant patient."  This is awful, both for me and the PT.  I'm slowly getting better at saying stop, but if I don't have therapist-client rapport yet....well, it's going to take a lot to actually be able to say it.  This is something that comes from trust (and works best when I have only a one or two person "team"....I only roleplay an extrovert!).

The therapy pool at the PT clinic

Photo description: shown at an angle, a small indoor pool, approximately ten feet by 10 feet with stairs and handrail leading in to the approximately four foot deep green-tinged water.  There is a mirror on the upper right side of the picture and wooden doors on the upper left side.  The tile around the pool is grey, the pool itself has beige, blue, and coral tiles in a geometric pattern.  A wooden bench is barely shown in the lower right side of the photo.

I agreed to biweekly aquatic physical therapy at the new clinic.  I gave it a good solid couple of weeks.  I really tried....but just being in the water hurt.  Walking hurt worse as the 98 degree Fahrenheit water loosened up my already hypermobile ligaments and tendons and ended up pinching nerves.  I wasn't even getting any benefit from the water exercise because I was either too strong, too flexible, or in too much pain.

Thankfully, this physical therapist is being awesome (not only does she meet my PT requirements that I put at the beginning of this post, but she's friendly and funny).  We're doing "land-based" PT including E-stim (like industrial TENS) and dry needling (like a cousin to acupuncture, but different in that it tries to derail nerve issues in trigger points).  We'll see what happens.  I really don't have the money to be doing the human guinea pig thing ($20 biweekly copays add up, especially with my other medical bills), but I would really like to be more functional in my life.  I'm still dubious as the increased pain is draining my energy, making school and work extremely difficult.  I guess what matters is that I'm trying, right?

Cyborg Dance Projekt: Un/lucky 13

Photo description: extreme close-up of pale skin with a tattoo of a green shamrock and the number 13 underneath. The skin is shiny from new tattoo ointment.

Although I'm not particularly superstitious, thirteen is my lucky number.  I love Friday the 13th as some really wonderful things have happened to me on that day.  So week 13 is getting its own CDP post.

Ever since the workshop with Issam Houshan, I've been practicing my doumbek almost daily, even if I can only spare 10-15 minutes to do it (enough time to keep the muscle memory of where my hands need to be for doum, tek, and ka....not really enough to get significantly better at it, but my time is limited with work, class, physical therapy, etc).  It's also been a chance to really learn various rhythms and their names so I know the difference between a baladi, malfouf, saiidi, ayub, and others.

Dance-wise, it's been rough.  I'm doing a round of aquatic physical therapy at the suggestion of my pain management doctor (see my post on FFF entitled "Doctors don't say that...unless you're fat" for more information on why I consented).  My dance schedule was Sunday, Tuesday, and Wednesday evenings with PT on Monday and Wednesday mornings.  It's also mashed up with a higher dose of nortriptyline (a medication that helps with nerve pain) and getting back on my growth hormone replacement...in all honesty, it could be a horrific mashup of everything at once causing a rough week.  In short, my pain level has been pretty hellacious, combined with leg weakness, balance problems, and proprioception issues.

I've been making it to a class every other Sunday (either intermediate cab or ATS level 3), every Tuesday ATS level 2, and either intermediate drills/layering or intermediate tribaret, but I use every spare spoon I have in my arsenal to get through just one class.  I sometimes dance with my TENS unit on...which isn't ideal because sweat + electrodes = bad zappy. I'm not sure where my ability to do 2-3 classes back-to-back went (from the beginning of the Projekt), but I feel like I found my dance shot clock.  I feel like my body is trying to tell me that dancing is not something I will be able to keep up with long term....but I don't know what "long term" really means.

With this in mind, I'm going to dance my heart out in a blaze of glory.  I'm going to try to perform as often as I can, to take classes with as many instructors as I can, and live it up.  I'm going to try to pinch pennies and fund raise to go to the Fat Chance Belly Dance American Tribal Style General Skills workshop in St. Louis, Missouri in August 2014. If you want to help me get there, I have a Paypal donation button at the bottom of this post and am considering a GoFundMe project to make it happen.

I'm going to keep up with all my pain management modalities (ice, TENS, medication, physical therapy) and try to keep my hopes up.

Cyborg Dance Projekt: Weeks 11 & 12....full shimmy ahead!

My beat up FCBD bag with my TENS unit

Photo description: A cream colored, multiply stained, but visibly used & abused tote bag that says "Fat Chance Belly Dance, Devyani Dance Company" in magenta text,  "Tribal Pura" in orange text with a green and design in the middle.  My TENS unit sits on top of the bag with a cord stretched out of the picture.  The screen reads "18.0" on the left and "0.0" on the right.

This has been an interesting couple of weeks in the Projekt.  For the most part, I've been sticking with my three classes a week (sometimes missing one of them due to exhaustion or too much pain), but it's just been busier overall.  I've also made a point of playing my doumbek several times a week, even if it's only for a few minutes.

My studio hosted Project Shimmy, a world dance show that raises money for the Triad Health Project, a local HIV/AIDS support organization.  I volunteered at the check in and ticket desk, and got to see some amazing dancers from throughout North Carolina.  Sara Beaman (a wonderful woman who offered to give me a private lesson to figure out my cyborg biomechanics....and a phenomenal performer), Emily Beaman, Xavier Shadowdancer (my Sunday night intermediate cab teacher), Torque (the professional troupe that is based at Twisted Dance), Nandana, and a bunch of other stellar folks.  Not only was it an awesome show to watch, but really got me back in the mindset that I needed to bring my dancing back to at least a semi-professional level.

The other big thing was an Autumn Dance Salon and Drum Jam in Winston-Salem, NC.  Issam Houshan, an internationally acclaimed tabla (another name for a doumbek) player was offering workshops on drumming and zilling, plus there were three dance workshops available...one of them was a tribal fusion workshop taught by Tina Marie, a former member of UNMATA (one of my dance inspirations).  My partner paid for me to be able to take one drum workshop, one dance workshop (all that my spine would really allow for anyhow), and the show that evening.

Let's just say it was an amazing day.  I woke up feeling absolutely awful due to pain and not enough sleep, but the chance to learn drumming techniques from Issam pushed me to get there.  He is an amazing teacher, spent time making sure that all of our doums, teks, and kas sounded right (he even gave me some personal attention to get my small hands in a better position for the ka).  I had a few fangirl moments like when he borrowed my drum to show differences in drum sizes (*squee* Issam held my drum!).

Between the drum and dance workshop I was signed up for, I had some time to chat with people, look at the shiny things people were selling (I splurged on a pair of leopard print pantaloons that another dancer was parting with for $15, thus making myself broke for the rest of the month...but worth it....because leopard print).  I was a little sad that I wasn't doing the zill workshop with Issam, but I knew that a few of my friends from the studio were in there.

The tribal fusion workshop with Tina Marie was great as well.  My body was still angry at the world at large, and even more miffed that I'd spent an hour and a half perched on the end of a too-tall-for-me chair with no back support, but I got through without any real spine issues.  We did some neat layering exercises that actually kept me from making my basic moves too big, then learned an ITS improv move that I've always loved from UNMATA (this video has the move at approximately 4:15...the video does have strobe lighting, so be careful if that bothers you).

After the workshop, I had lunch with Sara and Tina Marie.  It was cool to chat about all sorts of dance things, experiences, and whatnot.  We went to Tina Marie's house so she and Sara could prepare for the show, chatted about costuming, makeup, music (I now have a possible song candidate for the Cyborg Dance Projekt performance!), even a little bit about work versus dance conflict.

The show itself was a lot of fun.  I realized that ATS, tribal, and fusion were less common in this part of the state but it seemed really well received.  There was a variety of skill levels and styles, which sometimes makes a hafla more interesting to watch (it feels more like a community dance party than a show).  Issam drummed for one of the dancers Paula, and continued to drum for the drum jam after the performances (that I didn't stay for because I was almost out of spoons and I had a half hour drive back home).

What was really poignant for the day was the number of times people told me that they were sad that I wasn't performing that night....it really made me feel like a wanted part of the local dance scene!  What a much needed ego boost!

Between dancing and drumming, I'm full shimmy ahead to week 13 of the Projekt!  Aiwa!

Things I've learned from modeling

2013- Travis McKeithan Photography

Photo on the right is from Travis McKeithan Photography.  It has a black background with dramatic lighting. My hair is medium auburn and barely touches my shoulders, I'm wearing green plastic framed glasses, a black necklace with a green chainmail pendant, a grey football shirt with four female Marvel superheroes that says "femme fatale" in white lettering.  My body is shown from the hips up.  My head is facing partially to the right with my chin held high with a facial expression that seems to say "yeah, so?"

Folks that know me in person may know that I've dabbled in modeling the past six or so months.  Nothing major, and nothing paid...more for personal exploration and awesome body positivity art projects.  Some day I might publish the post about my first modeling experience....but for now, here are some thoughts and observations from my few adventures in front of the camera.

• Modeling can be physically, mentally, and emotionally hard work
• Modeling is fun, especially when I can dance and play
• Having someone to use as a modeling mentor makes it easier (thanks to Heather of Fat Girl Posing)
• I need to learn how to do more dramatic makeup (both for photos and dance performances)
• I don't need to love my body to find photos of my body interesting and thought provoking (although being uncomfortable can translate easily to looking uncomfortable)
• Cellulite looks neat with shadows
• So do scars, no matter how new or old they are
• Photos don't have to be pretty to be engaging
• I'm prone to Bitchy Resting Face (YouTube link here)
• I probably love bright colors because I look good with them
• Clothing is a prop
• Makeup can be a prop as well
• I will notice "imperfections" that others will not notice
• There are no imperfections, only uniqueness 
• I burn a lot of spoons doing it, but it's so much fun...I sometimes pay dearly for my fun just like I do with dancing, but I love it
• Self-consciousness can be shed
• Modeling is a lot like acting or dancing...if you aren't "in character" or are feeling uncomfortable, it will show

Some of that was stream of consciousness and is subject to change.  I'm not a visual arts scholar nor do I consider my self a visual artist (dancer yes, but not a dance scholar).

Thoughts?

I'm Fat and You Can't Change That

This blog post is my coming out party.

I am fat. I am a big, fat woman. That's probably the first mental note people have of me. Next my blue hair, tattoos and mobility aid. I know the string of judgments that spark up in their heads. I've heard it all before and I even hear them in my own head sometimes. I choose not to listen or care.  It's easier than you think.  For one thing, I know that I am an amazing human being. That's not conceit. It's not inflated ego. It's a statement of fact. 

I was THE fat girl in every class growing up, and since we moved around a lot I was often the NEW girl, too. I don't think I realized that I was fat and that the rest of the world found that undesirable until first grade. That was when the teasing began. A little boy who I knew liked me would chase me home singing to the Batman theme, ''Dunna dunna dunna dunna FAT GIRL!''. It wasn't long after that I started to realize that it was not cool to be my friend. Why? Because I was fat .  It wasn't enough that people wouldn't talk to me, or would only talk to me when no one else was around. These brats had to taunt me and ridicule me loudly, in front of everyone.

           

 I was told that ignoring them would make it stop, because they would get bored. That doesn't work, but I don't do well with conflict. So, I just became withdrawn and secretive. It wasn't until high school that I found friends I could trust, but I still withheld emotions that I wish I could've expressed. I just couldn't do it. I was sure that they would betray my trust, and laugh in my face. I still avoid situations that make me feel vulnerable.

              

My parents tried their best to rid me of my evil fat. We adhered strictly to Fit for Life for a long period of my childhood, and I was made to walk and run track.  I am completely flatfooted. Running caused my feet to hurt like I walking on glass, but as a child I had no concept of chronic pain. I was told, "Everybody's feet hurt."  I realize now that this was an early sign of Ehlers-Danlos Syndrome. Everybody's feet do not hurt like mine.  I was fairly active as a child. I liked to explore the woods, ride my bike, play catch or softball.  I didn't lose weight.

              

 By the time I started my freshman year, I was in pain most of the time. I would have terrible headaches that lasted for days, and I took so much aspirin as a teenager that I had an ulcerated stomach lining at age 20.  I started going to doctors. I found my thyroid was underproductive and started replacement hormones. If I brought up my chronic pain (I still didn't understand that was what I was experiencing) I was dismissed and told I just needed to lose weight and exercise more.     I tried to explain that I was in INTENSE pain, that it was all the time and all over my body. Eventually, I was sent to an orthopedic doctor. I found out that I had a birth defect in my elbows that makes them permanently dislocated. Yep. I was in my 20's before I found out why I couldn't straighten out my arms like everybody else. I also found out I had early onset osteoarthritis (EDS, again).  Still, it didn't explain the extremity of my pain, fatigue, and malaise, and all these other little crazy symptoms that eventually lead me to a diagnosis of fibromyalgia.

             

 ~ I should pause to mention here that along the way to adulthood, I found my heroes in strong, intelligent, independent women and the pages of Ms. magazine.  I saw the beautiful, and inspiring Marilyn Wann on a talk show promoting her book, "Fat!So?". This was before we had internet, and she was the first person I had ever heard talk about fat acceptance.  Her confidence and bravery has kept a burner on in the back of my head and heart with a pan of awesomesauce simmering. I realized that there were people out in the world that wouldn't treat me like a piece of shit just because I was a fat. As the internet became more readily accessible to me I began to find these people.  I now have an online support network of wonderful and lovely, creative, fat women that I can run to when I am having issues with the world.  ~

            

I searched all over the internet to find other people with fibromyalgia.  I found tips for coping with pain and fatigue. I found out that food allergies could exacerbate the symptoms, and I completely cut gluten out of my life.  I did hours and hours and hours of research trying to find something that might help me deal with the pain. This was just before Lyrica became the fibromyalgia go-to drug. (side note: I find the commercials to be infuriatingly dumb, and get fiesty every time one comes on. I tried Lyrica for 3 weeks, and it depressed my entire world.)

               

We are told that fibromyalgia is not progressive, but I was getting worse. I had new, unique and very extreme pain. My kneecap became unstable from EDS and I was intensely tender in spots not associated with fibromyalgia. One night I found a painful lump in my abdomen, and then I found more and more. I found these painful lumps almost everywhere in my body. My arms and legs are weighed down with them.  Fibromyalgia is not associated with any kind of growths or lumps. I again went to the internet in search of answers.

               

Eventually, I came upon "Dercum's Disease" (DD) also known as "Adiposis dolorosa" (literally painful fat).  DD is characterized by the growth of painful fatty lipoma-like accumulations.  (For this blog, and in most cases I will refer to the lumps as lipomas. However DD lumps are not always in the form of a lipoma. Some are pillow-like masses of soft tissue, like a painful fat fluffy cloud, and others are smaller and firmer and feel like an almond got stuck in your flesh). DD lipomas hurt on their own which is contrary to what most doctors are taught to believe, and it’s possible that DD lipomas aren’t technically lipomas at all since lipomas are not supposed to cause pain. This is just my hypothesis. The lipomas can also press on nerves, and wrap around muscles and organs.   

DD comes with a laundry list of symptoms and associated conditions, but there are 4 cardinal symptoms for diagnostic criteria. (1) painful fatty masses (2) generalized obesity (3) asthenia, weakness or fatigability (chronic fatigue) and (4) mental disturbance such as unstable emotions, depression, confusion, memory problems and dementia. Thankfully, I don’t yet have dementia, but I do experience confusion and depression at times. My memory is not up to par. I am always fatigued; it is debilitating.  I also have an abnormally low base temp and terrible cold intolerance, both common associated conditions of DD.

             

There are 3 types of DD, and the kind I have is the general diffuse type.  So, I can get lipomas anywhere that fat can grow. The lipomas can be as small as a grain of rice, or as large as 10 lbs or more. They can wax and wane in real time. My experience is that they seem to grow in cycles. They have steadily grown and accumulated in the past year. DD is supposed to be triggered around age 35, and I found the first lump just before I turned 34.  I have large bags on my arms full of lumps that just hang and drag down my arms. With my elbow defect, and other issues, I have been joking for years that I have T. Rex arms, because they are basically useless. If I fall in a pit, I’m dead. Lately, it hasn’t been amusing how weak I’ve become. Sometimes, I pick an object up and think I should have an easy hold on it, and it slips right out of my hands. The lumps have deformed my legs, and they have taken over my abdomen. Walking (which was difficult for me before) has become increasingly difficult because the EDS and DD have begun to conspire together against me. The right hip and left knee will dislocate as I walk on legs that are swollen with lymph, and have masses pressing on the muscles and nerves.  I sometimes feel like aliens have infiltrated my body to torture me from the inside.         

Doctors have blamed my fat for all my pain and illness.   It IS fat that is causing my pain and illness, so they were almost sort of right for the wrong reasons. Yes, these are fat lumps, but this is a diseased, defected fat. There is no real known cause, or cure or even a real treatment. Current research indicates that DD is caused by faulty lymph system leaking toxins or metabolic waste into the body. The body sends macrophage cells to contain the toxins. Basically, any inflammation or toxins in the body can turn into lipomas for a DD patient. DD fat cannot be lost through diet and exercise. In fact, exercise, can cause lipomas to grow because of the release of lactic acid. Warm water therapy and low-impact exercise is recommended, but it is all according to the patient’s tolerance. I am sometimes in bed for a day or a week because I have chosen to do certain activities (like LIVING LIFE) and my body needs to rest.  

                

The only way to get rid of a lipoma, is to cut it out. Any type of surgery causes inflammation, and so, when one lipoma is removed, another moves into its place and now this lump brings friends.  Surgery is to be avoided. I know that no one is going to cut on me again. Heh.

              

As with EDS, Dercum's Disease is an orphan disease. Big Pharma is not interested in supporting research because there are no medications that treat these illnesses. Treatment is palliative and supportive through pain management. However, DD is often resistant to pain medication. Some have found relief through lidocaine injections, or infusions. Lidocaine infusions are somewhat controversial because of the fear of lidocaine toxicity. I haven't talked to my doctor about lidocaine infusions yet, but I know that day will come.  As for now, I have lidocaine patches, and sometimes they help when nothing else does, but you can only wear 3 at once for 12 hours at a time, and then you have to wait another 12 hours to use more.

               

Compression garments and lymphatic drainage massage have been reported to help some patients. Basically, lymphedema treatments could help, but Medicare requires a definite lymphedema diagnosis for the full treatment. This is one of the biggest problems I am facing in trying to live my life. I have not been able to get an absolutely confirmed diagnosis, and no one seems to be concerned about the fact that painful lumps are covering my entire body. I was told after a biopsy of a lump (that was so abnormal the pathologist took it to a pathologist convention, but "inconclusive") that my symptoms were "compatible with Dercum's Disease" but that they didn't want to "put that label on me" because the tissue sample wasn't "technically a lipoma".

I keep getting asked why getting a diagnosis is so important to me if I know what it is, know that most doctors don't have a clue about it, and it is very difficult to treat. It is important to me because this is MY BODY that is covered in these painful lumps that grow in masses and sometimes layers.  It is important to me because there are treatments that Medicare may pay for that I can't get without certain words and numbers on certain forms. It is important to me because I have battled this weight bias all my life when it comes to getting the treatment I need and being taken seriously. It is important to me because I am being screwed around by bureaucratic paperwork, and lost in the system. It is important to me to raise awareness, so that others fighting this illness alone will be able to connect with folks like them across the world. Likewise, raising awareness could bring funding to the Fat Disorders Research Society which is helping to fund the research of Dr. Karen Herbst, an endocrinologist who is the only specialist on rare adipose disorders in the United States. One day, I hope to be able to get in to see Dr. Herbst, because she may be the only doctor in the States that feels qualified to diagnose me. Dr. Herbst currently works at the University of Arizona, and from what I've heard has a 6 month waiting list for an appointment. 

                

I loved my body as it was, and I am learning to love my body as it changes. DD is progressive, and I will do what I can to try to slow that progression, but I've already seen the shapes (and I MEAN shapeS) of my body change.  Illness has a major impact on the size and shape of a person. I will not compare my body parts to the body parts of an able-bodied, healthy woman. I will not compare my body parts with anyone. I won't quit asking questions. I won't continue to see a doctor who dismisses me. This body might be defective, but I will take care of it the best I can, because it is the vessel that holds my soul. I am still enjoying the rabble rousing here on Earth.

                

I am fat. I am a big, fat woman. Accept it.

                 

Thanks for reading! I hope you got something out of my post.  Candice invited me to share the link to my online fundraiser: www.gofundme.com/wheelsforabetterlife I am trying to raise the money to get a motorized wheelchair and hearing aids that I cannot afford.  You’ll find some of my EDS story, and more about me personally there.  I can't wait until the day where I have the independence to be able to leave the house on my own and fight for the civil rights of marginalized and disenfranchised people.  If you can give, any amount would be beyond appreciated. I understand these are difficult times for all of us, so I’d be very grateful if you could share this link with your followers and friends. You may think you don’t know anyone who has money to spare, but maybe someone you know does. I need your help to connect to that person. They are holding on, for just the right cause to bless with their funds. That cause could be an adorable fat Texas woman.  Hehe.

Some links that might interest you:

www.fatdisorders.org

www.lipomadoc.org

www.ednf.org

Email me at: occupywheelchair@gmail.com

Cyborg Dance Projekt: Weeks 9 & 10

My doumbek &  my crutch at World in Motion

Because of the start of the semester, my time for blogging has been cut a bit short.  I apologize for the
combined Cyborg Dance Projekt post.

Photo description: a light and shiny wooden floor of a dance studio with a doumbek drum (silver with a white synthetic drum head) standing next to a black and bronze forearm crutch that is laying  down. 

The past two weeks I've been sticking to a dance schedule of one class at a time, three classes week.  Intermediate cab (a modified choreography from Bozenka), level 2 American Tribal Style, and Intermediate tribaret.  I was tempted a few times to take two classes at once, but my workload with work, school, and my fiance's car problems kept me from doing that at all.

Week 9 was actually pretty uneventful.  Both of the choreo classes made me feel almost like my old self, just rocking through choreography and soaking it up like a sponge.  I kept a pretty decent posture through the courses, didn't overextend, and made sure that any time not spent in motion was spent either leaning against a wall or crouched to keep my spine where it needed to be.  The ATS class was a little harder just because a lot of the classmates use body waves and Arabics as go-to moves (two moves that are spinal undulations that are hard for me to do because of the metal bits....here's a video showing the move and variations of Arabics).

Week 10 was a bit rougher.  Sunday's choreo class was ok even though I was hurting a bit.  I realized after the class that even though I'm still in a lot of pain, I can usually still do most bellydance movements without severe exacerbation of nerve-related symptoms (before surgery, bellydance was one of the things that would always and severely cause nerve issues).  ATS is going well enough that I inquired about the possibility of taking the level 3 class, with the answer being a resounding "yes" from teachers and classmates (this will take some schedule wiggling though as the class is in the middle of the afternoon on Sundays, although I would have at least an hour break between that class and the intermediate cab class in the evening.

Wednesday was a bit rougher.  I've been having an excessively bendy body, which usually correlates with an uptick in full body pain (yay for pituitary dwarfism!).  My right ankle, the one that I've sprained five or so times, felt like it may be sprained again....although I didn't remember rolling it (a byproduct of not feeling part of my legs).  My back was unhappy, but dance is my current physical therapy.  My main problem was that I had trouble keeping my movements small in the choreography that we're learning, which aggravated both my spine and the rest of my unhappy joints.  I will probably always be fighting my "bendy girl" joints (as a yoga teacher called them).

The end of the week was punctuated with a "drumming for dancers" workshop in Morrisville, North Carolina (a bit over an hour drive).  I bought a doumbek a couple years ago when my spine started getting really bad because I wanted a way to stay in the dance community, but I never learned how to play it.  I tried to learn by just trying and I tried learning with a DVD, but I could never get the right sounds (for you drummer folks, specifically "tek" and "ka").  This workshop came up, and my partner paid for the workshop as a birthday present.

My pain level was so bad that walking was really difficult, so I was incredibly thankful that I was signed up for something seated.  Even with my crutch, my gait was limited to a shuffle as anything more felt like my sciatic nerves were being clamped with needle-nose pliers.  We got to the studio a little late, but just in time to be shown the basic "where to put your hands to make the different sounds" part.  Amazingly, once I was shown the positions and had them checked (both by sight and sound), I was off and running.  Sure I made mistakes (lots of them!), but it was like I was meant to be doing it.  I found a joy that combined my lifelong love of music (little known fact, I had a music scholarship for euphonium and played the bass trombone in a collegiate jazz band).  At the end, I was just ecstatic....especially as folks talked about organizing future workshops and drum jams that would help us all become better drummers.

It's been a hell of a couple weeks....but at least there was some awesomeness in the Projekt.  Now to figure out how to practice my doumbek at home without freaking out my cats....

Invitation for guest bloggers

As some of you have probably noticed, the school year has picked up and my blogging has slowed down.  I'm working on a Cyborg Dance Projekt post for weeks 9 & 10, a conclusion to the bike commuting experiment (short story: it failed), a post about Gen Con (short story: it was fun and I did it better than last year), a little something about my birthday, and a couple guest posts elsewhere.

Interested but not sure what to post about?  I'm looking for intersections of body size, disability, dance, physical activity, geeky pursuits, and social justice issues.  Guest posts don't necessarily have to be about those, but it helps.  I'd like to give people a platform to talk about personal experiences and things that they are passionate about.  I'll post calls for papers and presentations for conferences, book anthologies, or projects that give marginalized people a voice.

Your submission can be as long or short as you like (or you could do a series of posts).  Please be aware that images need descriptions and videos (or audio files) that you link to need transcripts for accessibility purposes. 

Happy September!

Commuting while crippled

Minnesota MS 150 bike ride, June 2007

Photo description:  This photo was taken in 2007 at the MS 150 bike ride in Minnesota.  It was taken on a paved bike trail with grass and trees in the background.  I'm on a seafoam green road bike (skinny tires and curved handlebars).  I am visibly fat wearing spandex black cycling shorts and a jersey that says "Erik's Bike Shop" along with a white and teal helmet with a blonde ponytail visible.  I have dark sunglasses and a smile (although I didn't see the photographer...I was just having fun!).


The past few years as a graduate student, I've had a pretty constant gripe about the difficulties I've had with transportation to and from the campus.  I live within what would normally be considered "walking distance" from campus, which means that I live about 0.75 miles away from campus (which I could wheel if the hills wouldn't flip me backwards out of my chair).  As a kinesiologist (someone that studies human physical activity), I deal with ableism, both internalized and from a sociocultural standpoint.  It's compounded by being fat, with the standard response to being both fat and gimpy is "just get off your ass and you wouldn't be fat OR gimpy."  Yeah, right. *sarcasm*

Non-walking options are also prohibitive.  Handicap parking lot passes run about $325 for the school year (and does not guarantee a spot that is actually walking distance for me, or safe when I'm wheeling).  The city bus system doesn't have a spot nearby (as my home is considered close to campus).  The "special needs" bus requires a one hour window for a ride, which is not feasible with my schedule or my actual health care needs (and that's when it actually works....it is notorious for losing appointments).  I've asked my partner to drive me to campus, but it costs more gas (as he works from home usually) and it grates on my fierce need to be independent whenever possible.

I've been toying with options.  I've wanted a moped for about a decade now ever since I saw a Vespa scooter, but I would need a three-wheeled scooter because of my balance and my shortness.  I would also need money that I just don't have right now (the cheapest trike scooter I've seen is about $2,000 and the one I've been drooling at from Auto Moto with a roof is about $4,000).

Another option that I've wanted to pursue but can't afford is a recumbent trike.  They aren't that common, although recumbent exercise bikes in gyms and rehab facilities are.  This style of bike would allow me to bike without worrying about tipping over or dealing with legs that randomly give out on me.  Just like the moped, they are way out of my price range with most of them above $1,000 (and the good quality ones like the Catrike are at least $2,000).

My bronze crutch rigged to my red commuter

On Monday, I gave my old commuter bike a try.  It's a youth Giant brand mountain bike that I bought when I first moved to North Carolina (I nicknamed it the Red Dwarf Giant because of the small size).  I had a bike shop in 2008 swap the tires from trail tires (which are thick and nubby and make road riding more difficult) to commuter tires (that are thicker than road racing tires but smooth).  I tied my forearm crutch to the handlebars, which doesn't help with my balance and proprioception issues, but at least I have it to help me dismount and walk around campus.

Photo description:  Photo taken outdoors at a bike rack with a bush in the background.  It shows a bronze forearm crutch attached to the handlebars of a red commuter bike (hard to see because of the bright sunlight and bush in background).

How did it go?  Well, it was rough.  My partner helped me get the bike ready for me and we had to do some on-the-fly adjustments.  The seat had to be lowered significantly because I have to be able to reach the ground with my legs while on the seat....which means that I can't pedal in an efficient manner (and makes it much more difficult to pedal, especially up hills).  I'm also unable to stand up and pedal to tackle hills.  I was a sweaty mess for my meeting with my faculty adviser (thankfully my adviser is also a kinesiologist, so the "freshly exercised" look is pretty normal in our departmental offices).

Since the ride to and from campus wasn't too bad, I tried it again on Tuesday.  My rear end was sore because I wasn't wearing padded shorts and my seat is an original factory issued barely padded beast.  The seat position, while rectifies part of the problem with my balance, makes any incline hell on my body and my spine.  Being able to get to campus without using gas is great, but it hurts and burns energy that I still don't have.

This morning, I had to ask my partner to drive me to school.  Not only has biking blown through spoons that I sometimes don't have, it seems to have eaten the energy I need to get to work and to do my scholarly activities.  Just crawling out of bed, getting into the shower, getting dressed, and grabbing the easiest breakfast option left me feeling like I needed to go back to sleep because of extreme pain and fatigue.  I managed to get through my four hour shift, but I'm not sure if I can manage to get my reading done for class tomorrow, or if I'm going to be able to go to the intermediate tribaret bellydance class tonight.

The bike commuting experiment may continue, but we'll see what happens.  Money really has me stuck between a rock and a hard place.

Cyborg Dance Project Week 8: Gettin' busy

The sign on my front door of my home

Photo description: A white door with a framed sign hanging on the front of it.  It has a black frame with white background and says "Life isn't about waiting for the Storm to pass, It's about learning to Dance in The Storm."

This is the week that the Projekt and scholarly life collide.  Since I got back from Gen Con and literally went from airplane to classroom, I haven't had much time to breathe, relax, and get caught up on sleep.  On top of it, my partner's car needed repairs and I got a parking ticket warning despite my handicap placard at a parking meter.  By the time I got to the studio, my dance options at the non-beginner level were limited to just the ATS 2 class.  Forced moderation!

I'm finding that I'm still having a lot of trouble staying in proper dance posture and having trouble standing in one place at all without bending my knees backward or letting my back arch.  I'm slowly getting better about being able to zill and stay vertical, which feels like a minor miracle sometimes when I have to expend a lot of energy making sure my feet are where I think they are (my proprioception problems aren't going away, and I probably won't be getting any more feeling back in my lower body since I'm 7 months post-op).

At the end of the class, a couple of the other dance instructors joined us in some group improv....and ended up teaching the other level 2 students my favorite move (Egyptian half-turn) along with the Egyptian full-turn.  I've been worried that I'll toss those moves in when we do class improv, so now I know I can toss these in when I lead (probably not the full-turn because I have trouble staying upright with any full turn move at speed).

After class I chatted with Xavier (who I've mentioned in other dance posts) and told him about Different Drummer Belly Dance at Gen Con.  We chatted about geek belly dance and we started conspiring about doing our own geek choreo...I'm thrilled, especially since the Arabian Spices performance opportunity fell through.

Week 9 of the Projekt will probably involve three classes at Twisted Dance: Xavier's Sunday Intermediate cabaret class,  Tuesday ATS 2, and Wednesday Intermediate Tribaret (Melissa's class moved from Tuesday to Wednesday, so that'll help with being more gentle to my body).  While life is going to be busy between scholarly classes, time at the studio, paid work, wedding planning, and dealing with life in general, I usually thrive while busy...I'll find out pretty quickly if my body is up for this schedule! *fingers crossed*

Back from Gen Con into the Fall semester fryer

On Sunday, we found a giant gnome!  (He's from Gnome Games)

Photo description: this is the exhibition hall at Gen Con with booths & lots of people in the background. I'm seated in my chair next to a very tall gnome (mascot-type costume).
Yesterday I got back from Gen Con (a huge gaming convention).  My fiance, my good friend, and I  got off a plane, got our luggage, got the car, then had my fiance drop me off at my first class of the semester (Physical Activity and Health)!  I'll put together a post about the trip in the next few days, but I have to say that US Airways is officially my favorite airline.  I'm always treated with respect and kindness, they never mangle my wheels or my luggage, and they try to reseat me closer to the front of the plane whenever possible (along with my companions!).