Monday, December 10, 2012

(Not quite) the end of the semester

Serenity, a grey chubby tabby, laying next to Bela, an orange thinner tabby, on a light blue blanket
Serenity & Bela, my fur kids
It's been a heck of a couple weeks, which is why I haven't posted for a while (believe me, I have six unfinished blog posts sitting in BlogSpot!).  Bela, my cat that was seriously ill, spent a week in the veterinary ICU but has been back home since the Monday after Thanksgiving.  We're still fundraising to help with his veterinary bill (as it ate my surgery & endocrinology savings), but it looks like the little guy is going to pull through just fine.

Right before his illness, I found out that I need to go through with the spinal fusion surgery as I've exhausted all my options.  In the meantime, I've been doing physical therapy to try to get as strong as possible (although there's a huge difference between what I can physically do because of muscle strength & flexibility and what I ought to do because of pain & nerve ramifications).  I'm pushing to get the surgery done over winter break to hopefully not derail my doctoral program.  It's scary, and I don't even know what kind of fight I'm going to have with my insurance company because the orthopedic clinic won't get preauthorization before I have a pre-op physical (but the general practice clinic didn't want to schedule a pre-op before the surgery was scheduled *facepalm*).  I also had another unsuccessful appointment with a pain management medical professional, with the doctor interpreting "I'm doing so poorly that I'm taking incompletes in my classes" as "I'm working on my doctorate and must be doing FANTASTIC."  So, I'm left with the same pain management regime that's not working and trying to get surgery done as soon as possible.

In the midst of all the medical & veterinary issues, I've been trying to keep on with school.  It's been hard as I've been in too much pain to be able to drive to my research site (a 40 minute drive), so I'm taking an incomplete in that class.  My other class has been difficult, but I'm one 5-page paper away from being done with it.  It's been extremely difficult to think through the combined haze of pain and medication, and thinking from a sociological lens is even more difficult.  I know I'm not doing my best work, but right now I'm just hoping for sufficiently finished.

I've been trying to give myself some room to heal while still getting through my work, but I have to be careful because my job and health insurance are dependent on my student status....if I don't have the right percentage of completed credits, everything could come crashing down on me.  I'm hoping that getting my masters at the same institution as my doctorate may help, especially since I'm pulling nine credits from last year into my PhD plan of study, but only time will tell.

Thank you all for your support during this extremely difficult time in my life.  I'll try to get some unfinished posts put up in the next couple weeks as I work to get surgery scheduled and my classes finished up!

Monday, November 19, 2012

Bela's donation page

Orange tabby in a white blanket on blue soft pet bed, with a nasogastric tube, an IV on his right paw, and sad look on his face. A pale hand is under his chin.
My Bela, sometimes known as BubbaCat: GiveForward Page
An update on Bela, part of my furry support system who is seriously ill.  He's still in critical condition and in veterinary ICU.  My partner and I got to see him for about a half an hour, just the three of us.  He was brought in with a plastic cone around his head.  He has an NG tube for feeding and hydration, and an IV in his paw with two ports.  He's on two kinds of antibiotics and something for pain.  He had an ultrasound on his liver and pancreas, but the vet didn't find anything.

His vitals are staying good, but the vets are keeping us in a "hope for the best, prepare for the worst" mindset right now.  We're hoping for a treatable infection instead of cancer.  We're hoping that he keeps breathing well, but have given authorization to do CPR and other life saving measures.  He's young and has been healthy his whole four-ish years of life, but this illness hit pretty hard and we still haven't found out why his white cell count is really high or why is liver is struggling.

Bela let us pet him, dote on him, cry on him (that was me), and tell him how much he loved us.  He seemed to be doing better than when I left for work this morning, but I could tell that he was still in bad shape.  When the ICU nurse came back to get him hooked up again, he perked up, looked back and forth at us as if to say "why can't my parents stay with me?"  I started crying again (as I am now as I write this, so pardon the grammar mistakes).

We've started a GiveForward page for his care.  I put the goal at $3.000 because that was the vet's initial estimate, although I'm afraid we'll probably go over that (I've already paid about $1900).  I think we would be able to manage financially if it was just his medical care (although it would be tight).  The problem is that it intersects with my own health issues, both spine related and birth defect related.  Like I mentioned in the previous post, I can no longer put off spinal fusion but I'm trying to get the rest of my health stuff straightened out before I go under the knife.  So, the GiveForward fundraising page is a combined effort for Bela's immediate health and our long-term health as a family.

Another way to help out is by using my Amazon referral link (for instance, start with this link to Bela's favorite toy mice).  Clicking through my page gets me a little bit of referral money, and every little bit helps (you don't have to buy Bela more was just a way to put the link in).

Thanks to everyone supporting us in whatever ways you are able.  Thank you.

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When your (furry) support system gets seriously ill

 This post is a bit of an emergency post that is taking precedent over several other posts that are in the works.

Orange cat in a beige cat tree, poking his head out of the side of a nook.
Bela in his cat tree
Meet Bela, my younger cat.  He's about four years old and I adopted him when he was a little thing.  My friends found him in a restaurant parking lot and took him in, but their cats weren't thrilled with a kitten in the house.  The funny thing is that we all thought that he was a she, and my friends named the kitten Bella, after a character in Twilight.  I found out that the kitten was a neutered male at the furbaby's first vet visit, but just decided to alter the name by one letter since the kitten responded to his name (besides, there are famous Bela guys in the world, like Bela Lugosi and Bela Karolyi).

This weekend, Bela was just acting a bit off.  We weren't sure what was going on other than he seemed to have more nose & eye mucus than usual and he was lethargic.  He wasn't climbing to the top of his cat tree, and we kept finding him in weird nooks in the house (including the dryer...not one of his usual hidey-holes).  Last night we agreed to call the vet and get him looked at today.  My partner agreed to take him in so I could go to work (I've missed enough work because of my spine as of late, so I really can't afford it with impending surgery).

Orange cat perched on author's back, with author bent over at hips with short hair, glasses, grey long sleeved shirt, and jeans, leaning on desk
Bela perched on my back, photo circa 2009?
We found out that Bela is in critical condition because of a really high white cell count (the highest his vet had ever seen) and liver issues.  He's been transferred from his usual vet to one that can do an ultrasound and provide 24/7 care, but we still don't know what's going on.  We still don't know if it's contagious (meaning that we have to keep an eye on Serenity, my elder cat.  We also don't know how much this is going to cost, other than his care in the past 3 hours has already hit almost $400, the new vet required a $1,500 deposit, and will likely skyrocket with the ultrasound & the more intensive veterinary care.

All I ask is that you keep him in your thoughts, prayers, or however you keep vigil for beloved things in your life.  If financial contribution is an option, I will not turn anything down as this is all happening just days after I found out that I have to have spinal fusion surgery.  I'm going to put referral links at the bottom of this post to help fund if you have online holiday shopping, please consider clicking through the links so I can afford his care.  If financial contributions aren't possible, but still want to help, check the "about me" page for different rewards programs...InboxDollars gives a referral credit just for signing up (and it's a cash credit), and Swagbucks is how I've been getting a cat pheromone diffuser through Amazon.  If anyone knows any other fundraising options, let me know.

Happy healing thoughts of r'fuah shlemah for my little guy are also helpful.  He's been my little emotional support cat through all of my spine-related travails, from cuddling up by the the fracture in bed to laying on my hip snuggling with me through pain spikes.  I can't imagine life without him.

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Monday, November 5, 2012

Psoas I see my body

For those of you who don't get the anatomy pun, the psoas is a muscle that connects the lumbar area of the spine to the pelvis.  It's pronounced "so-as."
Author laying onfloor with a slim scimitar balanced on her head.  Hair is auburn and drapes over her shoulders, baby dragon tattoo on arm, hands folded under chin with legs crossed in the background. Costume is turquoise with bedlah bra, belt, and chiffon pants
Troupe photo taken in 2008

I've stepped up my deep tissue massage routine because my partner moved in with me several months ago and I can more easily afford to give it the "old college try."  I've been seeing a specific massage therapist at Hand & Stone Massage biweekly for the past two or so months in hopes that I can be the most functional person I can be.  Sometimes that means that she works the kinks out of my shoulders from the combination of office job plus schoolwork plus wheeling plus cane usage.  Sometimes it means that means she wants to try a different technique to see if I can get any sort of relief from the messed up spine joint.  It started out with just getting near the fracture then progressed to glute and outer hip work.

On my second-to-last appointment, she suggested trying to loosen the psoas and asked if I'd ever had this done.  I replied yes and told her how I'd had it worked on when I was bellydancing as it's a persnickety muscle that can get wonky with various shimmies and other lower torso movements.  I told her that I was fine trying it again, even though I knew it involved uncovering my abdomen and having her dig near my pelvis.  This is definitely a sign that I trust my massage therapist.

So when I saw her on Thursday, she asked if I wanted to try the psoas work.  I let her know that as long as she wasn't neglecting some part of my upper body I was willing to try it.  I'd rather know that my shoulders are able to handle my mobility needs and my scholarly work, even though some of my work is going slowly due to the new fracture.

The majority of the massage goes as usual, although laying on my stomach hurts worse than usual because of the increase in spine instability.  She has me roll over, gets to the front of my shoulders and arms, and asks again about the psoas work.  She gets me properly draped to work on my abdomen. 

I quickly realize that I'm a bit nervous about having my belly touched.  When my belly is uncovered, I unconsciously sucked in a bit then had to keep telling myself to stay relaxed.  Every time she moves her hands off the psoas I relax, and every time she puts her hand back I try to pull myself in, then remind myself to stay loose.  It happens every time she moves, and it feels like this is the longest part of the massage (even though I know it's not).  I try to laugh it off with the therapist, apologizing for trying to suck in my stomach.  She laughs in that way that tells me "no worries" (one of the many reasons why she's the person I go to).

Ever since that appointment, I keep thinking about how my relationship to my body has changed as my level of disability has increased.  I've gained some weight recently, although I'm not sure how much of that is due to a decrease in my ability to exercise, if it's a side effect of the various medications I'm on to deal with the pain, or if it's moreso related to my birth defect.  I've never actually been a thin person, and only flirted with being what the BMI considers to be a "normal" weight when I flirted with eating disordered behaviors in high school.  When I was a triathlete, I was still fat enough to be considered a candidate for gastric bypass.  I've never been a small person, and never will be.  I don't have the genetics or the physiology for it, and I'm usually ok with it.

I admit, I'm struggling with my weight.  By that, I mean that I'm struggling with the meaning of my weight.  This is where it's murky and tied to issues of internalized ableism and internalized sizeism, and it's hard to admit as someone who studies both fat and dis/ability in physical activity & sport.  Gaining weight, for most adult people, is considered to be a moral failing.  I had a neurologist, while otherwise awesome (particularly awesome because he treated my education level as a perk not a hassle), start talking to me about calories in/calories out and how weight can contribute to spine pain (correlation =/= causation, as I'm pretty sure I'm in pain because MY SPINE IS BROKEN).  I'm struggling with how people look at my body in motion, how my legs rub when I limp, or how my wide hips fill up my wheelchair when I roll.  In an ideal world (or maybe just my ideal mental world), I would just be another body, getting around however my body-at-that-time gets around.

Ideally, that's how it would work.  That's how I became a fat athlete.  I was just another body in a sea of bodies.  I wasn't the culmination of several markers of Otherness.  I was just a person, doing person-things.  I hope to one day find that happy point where I'm just another body, an albeit fat crippled body, moving around as just another body. 

It's hard when everything is bound up with pain though.  Pain is raw.  Pain is all-encompassing.  Pain is distress.  Pain makes a person take notice to the exemption of whatever else is going on.  Pain makes my thoughts derail, and makes for some long & rambling blog posts.

P/so/as the massage didn't make a difference in my pain, I think it brought to light a discomfort I've been having in my body that was intangible.  There will be more experiences that I'll have that will show me my body in different ways (and you all will get a chance to see the results soon, with photographic evidence).

Monday, October 29, 2012

The future is cloudy

Author seated in wheelchair wearing black leather boots, black leggings, black pirate shirt, & black leather hat, with partner wearing khaki pants, turquoise pirate shirt, and green tam.
My partner & I at the Carolina Renaissance Festival
I  just want to give you all a quick personal update.  I've spent the past two weeks in the throws of a pain spike that I initially attributed to my fracture shifting.  Last week, I finally went into Urgent Care and have spent 4/7 days in a doctor's office to see what had changed with my mess of a spine.

The short version of the story is that I have another fracture on my L5 vertebra on another stabilizing point.  This is causing neurological signs of spinal cord injury (instead of just peripheral nerve damage).  I'm waiting to hear about the results of an MRI that I had on Thursday to see if avoiding spinal fusion is still an option.

Based on what I've gathered from all these physicians is that I may not be able to avoid the surgery much longer, or I risk losing bowel and/or bladder function along with more mobility problems.  If it was a matter of just mobility impairment, I would probably keep waiting.  However, the combination of pain levels that hover between a 7/10 & a 9/10 (along with the increased risk of loss of bowel & bladder function) may make the surgery a more urgent concern.  While I wait for the appointment with the orthopedic surgeon, I'm pursing a second opinion with a neurologist and trying to see if I can find a spine specialist that performs fusions on people with some sort of dwarfism (I don't want the surgery to fail just because the surgeon doesn't understand that pituitary dwarfism impacts bone density and healing).

In the meantime, I'm doing my best to keep my life afloat in the midst of chaos.  It's hard to do my scholarly work with this much pain, and the anxiety of not knowing what the future holds for my body.  I'm also not sleeping well because of breakthrough pain, leg spasms, and electrical jolt-feelings down my legs.  I'm also really concerned from a financial standpoint, as the US medical system is really broken.

It's hard, really hard.  Hopefully I'll at least have something solid, even if it's bad news.  Dealing with the knowable, no matter how bad, is sometimes easier than dealing with the unknown.

Tuesday, October 23, 2012

The system is making me broke/n

Blurry photo of a grey tabby cat with a stuffed penguin on a beige & grey couch
Serenity, my grey tabby*
As a working disabled person in the USA, our system sucks. Because we don't have socialized health care, a person in my current situation has very few options. I have insurance through my job (student insurance, but still). No job/school, no insurance. I'm unable to work most 40 hour a week jobs due to this spine fracture, so quitting school to only work isn't an option (especially in this economy, especially because disabled folks are discriminated against in the workforce). Part time jobs usually don't have benefits. That would potentially leave me with trying to get on disability to get Medicare to have spine surgery.

This system sucks. If we had universal health care, PwDs could work without facing the potential loss of health care...which would make for more tax payers (yay capitalism). It would also be cost-effective because preventative health care is cheaper than ER visits (and I saw a lot of folks last night at Urgent Care with issues that would have been best treated at a primary care facility).

ObamaCare isn't enough. Look to Europe, Canada, Cuba....look at what economists call "developed" or "industrialized" countries, and look at what we're lacking. Then think back at stories like mine, where I'm literally in tears wondering if our health system dysfunction could inevitably lead me to having to take a leave of absence from school (and work, as my job is dependent on me being a grad student). Please. I know this rant is fueled by pain medication, frustration, & tears, but there's a reason. I'm definitely not the only one in this position.

*The photo is random...just a blurry photo of my elder cat Serenity in front of a stuffed penguin a good friend gave to me.

Thursday, October 18, 2012

You don't have to love your body

Today is Love Your Body day and I wanted to give my readers permission to do something that may seem possibly counterintuitive, transgressive, or pessimistic.

You don't have to love your body.

You don't.

Sometimes bodies do things that are out of our control.  Sometimes they are sick, broken, or cause pain (physical or mental).  Sometimes they keep us from doing things we want to do (like bellydance or CrossFit).  Some days our physical bodies interfere with our mental states, and some days our mental states interfere with our physical bodies (I know, false dichotomy, Cartesian-style...but it's still useful). Some days our bodies cause some major issues in our lives, and it's ok to be upset by it.  Bodies can be expensive with medical bills, adaptive equipment, various products taken internally or externally, various foods that either make us feel better or worse, various physical activities that impact us in different ways on different days.

I'm going to be honest and blunt and profane.  Right now, I fucking hate my body.  I'm living in a haze of pain and painkillers and breakthrough pain.  I'm living in a state of jealousy where I envy their ability to do the things that I want to do, and their ability to not just lose words and trains of thought because of pain spikes.  I mourn the loss of my more abled self, even the one that was still in daily pain and nerve problems but was able to still push mentally in scholarly contexts and physically in athletic contexts.  I'm embarrassed by the emails I've had to send to professors and peers about my semi-bedridden life, compounded by the fear that my disability is feeding into popular notions of the fat body as a lazy, inherently broken body.  I'm constantly wasting energy expecting unwanted advice, comments about how my body is something scary and untouchable, and what happens when the "get better soon" well-wishers find out I might not ever get better (and whether or not to just graciously accept the lie or tell the truth).

Black and white photo of author on road bike with helmet, Erik's Bike Shop jersey, spandex cycling shorts.  Text says "I STAND for fun physical activity for all. Weight =/= health"
My STANDard, photo taken in 2007
On better days, I can get to the point where I have a dysfunctional relationship with my body, full of ambiguity and ambivalence.  A day where I can more readily accept the neoliberal notions of body acceptance as an individual process.  Those days where I see the beauty in the dissonance, much the same way as the author from Building Radical, Accessible Communities Everywhere states in this Love Letter to My Body.  Some days I'm able to revel in what my broken body gives to me despite (and sometimes because of) it's brokenness.  My broken body has shown me who in my life is worth keeping around and who isn't worth the few spoons I have in my daily arsenal.

Today is not one of those days...but that's ok.  My fracture shifted two days ago, causing the most pain I think I've ever been in, even greater than when I actually broke my vertebra.  It makes life really difficult right now, particularly with my doctoral coursework.  My pain is not under control, and with the recent change-up in my medical team, there isn't much I can do about it short of going to the emergency room or hiding in my apartment.  It is what it is, and it's one of those times where self-love is a load of crap and I'm dependent on the love of others to get me through....but it'll be ok.

See, I don't have to love my body, and neither do you.

Monday, October 8, 2012

The language of dis/abled sport

Video is from the UK's Channel 4, advertising the London 2012 Paralympics through it's "Meet the Superhumans" ad.

Adapted sport, challenged athletes, disabled sport, Paralympics, Special Olympics. These terms use language that bifurcates sports that are explicitly for people with disabilities. This split creates a power dynamic that impacts various cultural flows (Appadurai, 1990). By separating sport categories by ability or impairment, and more specifically by adding qualifiers like "wheelchair" to basketball, "blind" to football, or "para" to triathlon, a subject versus object divide is created that makes the disabled athlete othered by the alternate designation that demarcates itself as different or separate from the prototypical athlete. This invokes an ideoscape of adaptation that makes the disabled athlete viewed as disingenuous at worst or an inspirational novelty at best.

Athletes that require the least amount of adaptation to their sport ventures are privileged. Since the archetypical Western athlete is seen as one that is white, male, able-bodied, and a good citizen of his nation-state, any deviations of this body lends itself to embodied qualifiers. In women’s tennis, Venus and Serena Williams are many times constructed in terms of their not-whiteness, with whiteness considered the default tennis player (Douglas, 2005). Any time their perceived behavior deviates from the script of the archetypical athlete (particularly when the behavior is thought to threaten the interests of the nation), their otherness is highlighted. This is also evident in the case of many indigenous Australian athletes in the Sydney 2000 Olympics (Gardner, 2003; Elder, Pratt, & Ellis, 2006), as well as with the black United States track and field athletes in the HBO documentary Fists of Freedom (Stem & Roy, 1999). The more the hegemonically atypical body resists the mold of the good citizen-athlete, the more resistance it encounters in its athletic pursuits. Resistance itself sometimes forces ideals and institutions, both sporting and general, to adapt.

While adaptation is a common concept in terms of discussions of disability and impairment, it’s a concept generally used to refer to when an existing environment has been retrofitted to accommodate a specific person or group of impairments. Adaptation as a concept assumes an essentialism that privileges the status quo and enforces neoliberal constructions. Stone (2001), when discussing the shift from a collectivist society to a neoliberal one, refers to this as the “’four selfs’:self-respect, self-confidence, self-strengthening, and self-reliance” (p. 58). For a disabled body to be able to be accommodated in society, the person must be able to request the environment be changed in a manner that complies with the policies, procedures, and practices of that setting. The person must also have a familiarity with the financial and technological ramifications of the request for accommodation, and be prepared for the social implications that follow that may require the person to justify their continued need or desire to exist in that space (an opposing viewpoint on accommodation and environmental adaptation is through a concept called universal design, in which an environment is not retrofitted but is constructed to consciously allow as many types of bodies to function at their peak).

Adaptation in regards to sport and athletics is mostly used to denote sports for people with impairments (although can be used in the context of athletic training to refer to physiological adaptation to effort, muscular capacity, or the like). For example, wheelchair basketball as an adapted form of (standard) basketball, sitting volleyball as an adapted form of (standard) volleyball, or ice sledge hockey as an adaptation of ice (standard) hockey. These sports that have abled analogs are usually the most well-known. This is in part due to a palatability factor, for example popular culture’s fascination with the violence inherent in wheelchair rugby, also known as murderball, and partially due to a familiarity factor, in which the adapted sport resembles an able-bodied analog that the audience has previously watched or participated. The advertisement that the British television station Channel 4 created for the London 2012 Paralympics is a good example of this palatability of adaptation. Which bodies are included? Which sports are highlighted? What’s missing?

Elite athletes that participate on the international scene, specifically Olympic or Paralympic athletes, have media narratives that may attempt to generate interest in a particular team, a particular event, or a particular sport. For example, Oscar Pistorus is a track athlete that competed in both the Paralympics as a division F44 athlete and in the London 2012 Olympics. He was one of a very small number of disabled athletes that claimed a sort of dual citizenship in the elite sport world by participating in both events. Many news pieces that discuss his athletic success place his success in light of the congenital impairment that led to the amputation of both of his lower legs, sometimes in vivid detail. The idea that impairment must be biomedically justified combines with the media narratives that require a tale of struggling and overcoming one’s disability to create a supercrip. Supercrip (and superhuman or superhero, in the case of the aforementioned Paralympics ad) narratives are intertwined for disabled athletes.

While disability may indeed be a valid addition to the narrative of the super-elite athlete much like other narratives of struggle against other life adversity, the focus on the origin of the disability (whether congenital or acquired) makes the idea of disability as always able to be overcame a problematic construct. These narratives create a divide between levels of impairment and also levels of socially constructed disability because of the involvement of technoscapes and finanscapes (Appadurai, 1990). Those with more access to fiscal resources, whether by charity, employment, or other means, are more likely to be able to navigate their chosen environment in a way that meets their needs. This means that Pistorus is more able to be seen as able-bodied through the adaptation of specially designed carbon fiber running prostheses (although it could be argued, in Pistorus’ case, that the technology involved clearly marks his body as super-abled or possibly cyborg).

While the concept of adaptation is generally seen as constructive and beneficial to people with disabilities that participate in adaptive sport, it is critical to keep questioning the impact of adaptation on the construction of the disabled body. The continual focus on adaptive sport may overshadow the ways that the disabled community has contributed to the sporting world, like the history of the Gallaudet University football team’s invention of the huddle, and also overshadow the other ways in which people with disabilities find themselves in sport and physical activity.

Dear readers, what do you think?  Does the concept of adaptation impact how sports for people with disabilities are viewed?  Would combining the Paralympics and the Olympics change the perception?

Author sitting in her wheelchair, flexing her arm before a 5k race
My first wheeled 5k...I was the only wheeler

Appadurai, A. (1990). Disjuncture and difference in the global cultural economy. Theory, Culture, and Society, 7, 295-310.

Bernstein, R. (Producer) & Roy, G. (Director). Fists of freedom: The story of the ’68 summer games [motion picture]. United States: Home Box Office.

Douglas, D.D. (2005). Venus, Serena and the WTA: When and where “race” enters. Sociology of Sport Journal, 22, 256-282.

Elder, C., Pratt, A., & Ellis, c. (2006) Running race: Reconciliation, nationalism, and the Sydney 2000 Games. International Review for the Sociology of Sport, 41(2), 127-141.

Gardner, G. (2003). Running for country: Australian print media representations of indigenous athletes in the 27th Olympiad. Journal of Sport and Social Issues, 27(3), 233-260.

Stone, E. (2001). Disability, sport, and the body in China. Sociology of Sport Journal, 18, 51-68.

Thursday, October 4, 2012

Trusting in the system

Author in 2009 bellydancing. Photo is black & white, with short hair, black long sleeved crop top, tiger print hip shawl, and black flared pants with tattoo showing on pale skin, performing a standing layback.
Pic taken in 2009 by Dave Stagner
A "comrade in spine crap" of mine started going to the same orthopedic clinic that I've been going to for pain management.  I've had a pretty decent relationship with my nurse practitioner there, so he started seeing her as well.  I saw her in the beginning of August, and he saw her towards the end of the month.  He found out that she was leaving at the end of the month, and I think my jaw hit the floor.

I felt like I'd hit the jackpot with this person.  I was able to be frank with her about symptoms and pain, to express my Health At Every Size standpoint, to let her know that I was a bit of a medical geek and had done a lot of research about my various spinal conditions as well as my birth defect-related minefield.  When I was trying to figure out if I should pursue spinal fusion, she gave me some markers of impairment that she thought were appropriate signals to revisit surgery.

So I found out from my friend that my NP left at the end of August, and that she didn't tell me at the appointment.  My first feeling was betrayal, then mourning, then panic.  I take narcotic pain medications and muscle relaxers daily (up to four times a day depending on the medication & how much pain I'm able to tolerate).  She understood that I usually refused to medicate my pain enough because of the side effect problems (want to try to do deep sociological analytic work while on narcotics?  For me, it's extremely difficult).  She also didn't treat me poorly because of my deep understanding of my various medical conditions.

You see, when your physiology is complex enough that general practitioners won't see you ( university's student health center has told me this recently, which makes life more difficult because my insurance requires me to use them for "general health" needs), there can be this tendency to latch on to any professional that doesn't treat you like a freak of nature.  I latched on to her fiercely.

Now?  I'm feeling lost.

I wouldn't even be seeing her for another month or two because of my prescription refills and our mutual understanding that I might just get slowly worse.  We both knew that I'm losing function and feeling.  We both knew that there was no literature about spinal fusion success in people with pituitary abnormalities, and that I wasn't willing to be a case study (well, if someone would put me as second author maybe...just kidding).  She was forthright but gentle, and had one of those faces that always seemed to tell me that life sometimes sucks but it's worth the fight.

She never told me to quit school.  She never told me to quit my job.  She told me to keep being as active as I could.  She affirmed my athletic identity.  She did tell me to quit powerlifting (I didn't initially listen...I'm stubborn when it comes to something I love).

Now I have to either trust whoever takes over her position or find a new clinic.  I have to trust that, whichever option I chose, the provider will treat me with respect, will respect my knowledge of my physiology, and that will understand that my pleasant face is many times just a mask hiding pain and uncertainty.  I have to hope that I won't be shamed for my fat and that my broken spine won't be pinned on my size.  I have to hope that the person knows that sometimes my medication noncompliance is due to my scholarly work that I refuse to give up even though it becomes more difficult, both because I'm a doctoral student instead of a masters student and because the pain seems harder & harder to manage.

I have to trust in the American medical system to help make it ok, and I'm petrified.

Tuesday, September 25, 2012

I'm a (fashion) hypocrite (OOTD from Saturday, on wheels))

I have a confession to make.

I bought pants. Twice.

Some of you may have remembered my vow to give up pants that I made in May.  Well....

#1:  It started off with a Labor Day sale through Eddie Bauer.  When I was a bit smaller, they had a curvy cut of chinos that was serviceable (they do come in plus, but I haven't tried them...they're expensive)).  It wasn't perfect, but with a shirt that hit at hip length, it was no big deal.  I found out that they have plus sizes on their webpage, and they had a curvy boot cut jean on sale for $19.99 with free shipping.  Since I have an Eddie Bauer store near me, I figured that the worst that would happen is that they don't fit and I just bring them back to the store.

I bought two pairs of jeans at two different sizes because my hips were at one size and my waist at another, so I wanted to give the jeans an honest try.  With the larger size I had to keep reminding myself that my self-worth has nothing to do with the number on the tag, and that sizes are arbitrary anyhow (despite my Health At Every Size stance, sometimes old thoughts creep back in).

The good news is that I found jeans that fit my body shape (although Eddie Bauer doesn't have petite or short lengths in plus sizes, so they were about 6-8" too long).  The bad news is the fabric didn't feel right against my legs, although not many fabrics feel good with the nerve damage lately.

Verdict:  jeans returned due to the fabric.

Author sitting in dark blue framed wheelchair with water bottle hanging off a wheel lock, wearing a black fitted tshirt and the black cargo pants mentioned in the paragraph
Locker rooms aren't usually good for self-photos
#2.  I have a variety of rewards cards that give birthday coupons, and Torrid always emails me a $10 off a $10 or more purchase coupon as a part of their program.  I've fallen in love with their leggings, so I went to the mall and figured that I would probably end up with leggings or some jewelry.  I decided to check out the clearance racks (partially to see if they had some fun geek shirts) and ended up finding a pair of cargo pants that had a drawstring waistband and a curvy-looking waist-to-hip area.  Dubious, I tried them on and they fit perfectly (partially due to the drawstring).  Magic!

Just fyi, the pic to the right doesn't do the pants justice (locker rooms at the YMCA aren't known for fantastic lighting or places to park oneself in front of a mirror). The pic doesn't really do me justice either, but I think I'm just having one of those days where I don't like any of my pictures.  I also promised one of my readers to post a fashion-related picture post of me in the wheelchair because clothes fit differently based on different ways of moving around the world.

Even better is the length.  They have buckles to make them be either a short capri or crop on an "average height" person....which means that the crop length is perfect as regular pants for me.  The D-rings also make a little jingle sound when I move that always makes me smile.  The cargo pockets are perfect for when I'm using my wheelchair so I can access my phone & wallet easily, but aren't so bulky that I scrape the pockets when pushing or using a cane.

Verdict: I have pants!!  That fit well (even if they get a little short when using my wheelchair), have easily accessible and functional pockets, and the fabric isn't annoying.  Hooray!


So, I'm not a complete skirt convert.  I admit it.  Maybe if I can get myself a Maccabi skirt or a Utilikilt, maybe I'll be converted...maybe :-)

Monday, September 24, 2012

Being a doctoral student with chronic pain

Starbucks disposable cup stained with pink lipstick and chocolate from my morning mocha
Starbucks cup stained with lipstick & mocha
Since I've been busy with school, work, coping, and being under the weather, I'll leave you all with this image that seems to sum up my current experience as a doctoral student with chronic pain.  A significant portion of my budget is dedicated to emergency caffeine (usually in the form of Starbucks because it's near my office), hence the cup.  A mocha is my usual preferred caffeine intake mechanism as it provides enough substance in my stomach to be able to handle pain medication when I'm hurting too much to eat properly.  The lipstick is significant because I generally only wear makeup when I'm really struggling with pain.  The messiness of both the chocolate stains (some from carrying it from the student union to my office, some from sipping it between phone calls) and the lipstick stains remind me of how messy my life is on the days I hurt, how my brain is sometimes just a mash of colors that might be pretty where they "ought" to be, and the lid representing how I would normally try to keep everything hidden if I could.

Coffee mess as art....

Thursday, September 20, 2012

Stairs versus elevator: Round 1...fight!

Elevator button panel with the second floor button covered with a drawing of stairs taped over the button, the raised number 2, and the Braille number)
Ableist to say the least, moreso with the taped Braille
I was on Twitter and came across a tweet from Amanda at Fat Body Politics that really got my brain going.  The tweet had this photo of an elevator button panel (the photo on the right).  This photo has been going around my Facebook feed between my physical activity & public health scholar friends and my body size & dis/ability activist friends, with some varied results.

Many of my public health & physical activity-minded friends talk about how every day physical activity needs to be encouraged, like taking the stairs instead of using the elevator (also called "non exercise activity thermogenesis" or NEAT for short).  Sounds pretty benign huh?  What this seems to lead to is architecture that places stairs in a very easy to find and access places and the elevator in an inconvenient (many times hidden) place.  The other mode of thinking with this style of architecture is to keep the elevator more clear for folks who need it (people with mobility impairment or people hauling carts of equipment), but it can backfire.

So what's wrong?  Well, I'll use my personal experience as an example.  On days that I use a cane (or when my nerve damage wasn't as severe, on the days that I could manage without a mobility aid), I have to make a bunch of choices when I need to get to a different floor of a building (the same decisions happen with entering a building that has stairs, just sub "elevator" with "ramp").

Can I safely use stairs today?  Am I feeling my legs well enough to not trip going up the stairs or fall down the stairs?  Will taking stairs that are closer to my destination use more spoons than trying to find the elevator that's tucked away, nowhere near my current or final destination?  Will taking the stairs lead to pain that makes me unable to work, do scholarly activities, or even work out (and do more efficient physical activity) later in the day?  Which option will cause me less social grief as a fat person (because my body is seen as proof that I am sedentary simply because of its size)?

Not all disabilities are visible Some disabilities wax and wane in their visibility (see my post PassOut for an example).  A lot of invisible disabilities and illnesses involve a huge energy management component, and elevator usage can help that person live a more fulfilling life....when we aren't barraged with messages that tell us that we're horrible people for using the elevator for a "short distance" or that we're fat/out of shape/sick/disabled because we don't use the stairs for whatever reason.

As a doctoral student in kinesiology, I would love it if people were more active.  It's what I study.  It's something I'm passionate about.  But...making healthist remarks about elevator usage doesn't help people become less sedentary.  It's shaming and shame doesn't help people become healthier and happier people.  Shame creates stress and the biomedical literature shows over and over again that long-term stressors (like shame, bigotry, and structural inequality) create less healthy people.

So instead of creating more problems in people's lives over whether or not taking the stairs is a part of their healthy life, how about this.  We make sure that both modes of transportation are clearly marked in a way that encourages people to listen to their bodies, keeps them safe, and keeps them happier in the long run.

Tuesday, September 18, 2012

PCA/ACA Fat Studies Call for Papers (CFP)

Author on a bicycle in cycling attire & helmet, on a road bike. Photo is black & white, with pink text saying "I stand" and black text saying "for fun physical activity for all. Weight =/= health"
My STANDard poster
Since some of my scholarly work is in sociology of the body & sociology of physical activity, my work frequently discusses fatness.  So, I'm reposting this CFP for the Popular Culture Association & America Culture Association conference to put the word out for any interested folks:


(please circulate far & wide)

PCA/ACA Fat Studies 2013 Call for Papers

Fat Studies is becoming an interdisciplinary, cross-disciplinary field of study that confronts and critiques cultural constraints against notions of “fatness” and “the fat body”; explores fat bodies as they live in, are shaped by, and remake the world; and creates paradigms for the development of fat acceptance or celebration within mass culture. Fat Studies uses body size as the starting part for a wide-ranging theorization and explication of how societies and cultures, past and present, have conceptualized all bodies and the political/cultural meanings ascribed to every body. Fat Studies reminds us that all bodies are inscribed with the fears and hopes of the particular culture they reside in, and these emotions often are mislabeled as objective “facts” of health and biology. More importantly, perhaps, Fat Studies insists on the recognition that fat identity can be as fundamental and world-shaping as other identity constructs analyzed within the academy and represented in media.

Please join us in Washington, DC from March 27-30, 2013 for the PCA/ACA National Conference at the Washington Marriott in Wardman Park. Presenters must become members of the Popular Culture Association. Find more information on the conference and organization at

The deadline for online submission of presentations is November 30, 2012. Please do not email your abstract to either of the Fat Studies Area Chairs; we will only accept submissions entered into the PCA/ACA online database. You can find instructions here: In short, under “Fat Studies,” enter the name of your presentation, an abstract, and a short bio. We welcome papers and performances from academics, researchers, intellectuals, activists, and artists, in any field of study, and at any stage in their career.

All submissions are welcome, but please use the information above to ensure your proposal fits within the academic and political scopes of Fat Studies. Please also be mindful that Fat Studies is a political project and not merely an umbrella term for all discussions of larger bodies. Also, we encourage submitters to rethink using words like “obesity” and “overweight” in their presentations unless they are used ironically, within quotes, or accompanied by a political analysis.

Topics may include but are not limited to:
• representations of fat people in literature, film, music, nonfiction, and the visual arts
• cross-cultural or global constructions of fatness and fat bodies
• cultural, historical, inter/intrapersonal, or philosophical meanings of fat and fat bodies
• the geography and lived experience of fatness and fat bodies
• portrayals of fat individuals and groups in news, media, magazines
• fatness as a social or political identity
• fat acceptance, activism, and/or pride movements and tactics
• approaches to fat and body image in philosophy, psychology, religion, sociology
• fat children in literature, media, and/or pedagogy
• fat as it intersects with race, ethnicity, class, religion, ability, gender, and/or sexuality
• history and/or critique of diet books and scams
• functions of fatphobia or fat oppression in economic and political systems

Special Topic Session: For the 2013 Conference, we are inviting proposals for papers and performances for a joint session (1 to 2 panels) with the Fashion, Style, Appearance, Consumption & Design and Fat Studies areas. Possible topics include the intersections between body size, shape, and weight and one’s experiences as a fashion consumer, the ways fashion as an industry shapes the discourse around weight (“plus-size,” “women’s”, “husky,” “King-Size”, and “Big and Tall”) and fashion as a space for reclaiming the fat body through accentuating and adorning it (fatshion). Other topics could include the study of sales and the financial success of the plus-size, women’s, King-Size, husky, and Big and Tall market that have spawned a whole array of specialty stores dedicated to these consumers. Also the influence of fashion design and the evolution of the types of garments manufactured for these consumers to wear could also be suggested. Submit your online proposal for this Joint Session only one time to either the Fashion Area or the Fat Studies Area.

If you have any questions, please feel free to contact one or both Fat Studies Co-Chairs:

* Julia McCrossin (
* Lesleigh Owen (

We look forward to hearing from you!