Blog moved!

I'm a bad blogger...I decided to make the move to Wordpress with the Adventures of a Part Time Wheeler blog.  There are things I like about both blogging platforms, and dislike about both platforms, but it is allowing me to organize my posts in a way that works better for my work/school/pain-addled brain right now.  I'm hoping that I will be able to afford my own URL as well in the fall (likely www.parttimewheeler.com, or a similar derivation).  It's still under construction, so don't mind the dusty bits.

Feel free to head over there and take a look.  If you like what I'm writing, doing, accomplishing, I would love donations to my adaptive aid fund through GoFundMe or directly through Paypal.  If you like how I write and want to hire me for editing work, check out the details here to get started (rates negotiable!  Help a gimpy grad student pay her medical bills!).

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.

Six Month Cyborg Birthday

My surgical x-rays from January 16, 2013

Photo on the left shows two circular x-ray films.  The top is a front-view of my screws and rods into my vertebrae, the bottom is a side view that shows how long the screws go into my vertebrae.

It's been a long six months and today marks my half-year cyborg birthday.  I'm not quite sure what to say as this hasn't been the journey I expected to be on.  My mind is full of things that I thought I would be able to do by now.  I thought I would be walking without assistive devices.  I thought I would be able to walk the mile from home to work & school.  I thought I would have just a nagging pain that Tylenol or Advil could ameliorate (or maybe the occasional opioid when pain would keep me from falling asleep).

I knew that there were things I would probably never do again.  I would probably never run again, but I had hopes that I could walk 5k races and eventually be able to train for a walking marathon (because completing a marathon is still on my bucket list, along with see every continent and being an extra in a movie).  I knew that I would be limited in my weightlifting capabilities (I wrote about that in my post "Mourning the loss of my one-rep max").

Most of all, I expected to be back at my intellectual fittest, and that's the most frustrating thing right now.  I went back to work about two months too soon and probably should have taken a leave of absence for my coursework, but since my job and my health insurance are tied to my student status, I couldn't.  I'm not sure if my brain would be back where it needed to be if I took the three to six months off that I should have taken.  All I know is that between pain, spasms, nerve problems, and fatigue, my ability to concentrate on my scholarly work (or even reading fiction for pleasure) is severely compromised.  I don't even play video games as much as I used to because of it, and my ability to concentrate while playing board games or tabletop role playing games is so low that my friends have to make allowances.  I'm still fighting through a personal essay I'm working on for a book chapter, and the last 25 page paper I need to write for my Spring semester incomplete is trapped in cognitive purgatory.  Even several blog posts are stuck because of my brain fog.....the wheel is turning but the hamster is narcoleptic (I refuse to call it dead....I'm still working and still writing a little, and still managing to do some things in life that give me happiness).

It might seem as if I regret having the surgery by seeing what I've written.  I'm upset that it hasn't worked out the way I imagined.  I'm upset that my L4/L5 spinal joint is already showing signs of compressing the nerves into my legs.  I'm angry that I now deal with spasms that are painful and cause me to accidentally kick my beloved Bela cat (who has made his own amazing recovery and is now a 15 pound orange love beastie).  However, I am in less pain than I was this past November and December.  I haven't been to an Emergency Room for pain since before the surgery.  I haven't had a pain spike so bad that I couldn't breathe for an extended period of time.  I can walk through a grocery store most of the time, albeit aided with a cart or assistive devices.  I'm also slowly getting back into bellydance via my Cyborg Dance Projekt.

I don't regret the surgery, but I really wish that it would have gone better.  I knew going in that my pituitary birth defect would make this journey difficult and increase my chances of the surgery failing or not helping.  At this point, I just have to try to keep hoping that it will get better.  If nothing else, if my cognitive abilities don't improve, being a doctoral student in the sociology of physical activity & sport is going to be extremely difficult.  I enjoy sociological thinking, but it doesn't come naturally to me.  Science is my first scholarly language, but I find sociocultural scholarship more rewarding....but combined with this new post-op/cyborg/healing brain, it's exhausting and painful at best.

Here's to hoping that the next six months lead to a better overall quality of life.

Self-care versus obligations



My surgery x-rays showing the screws & rods

I'm at my "day job" all day today, my fourth 8 hour day since surgery on 1/16, and my third full work week.  I'm a 3.5 month old cyborg, and my body is telling me, in one of the most fierce ways possible, that I'm doing too much.  It's almost finals week, and I have been wracking my brain all day (in between my job duties of answering the phone and greeting people at the reception desk) trying to work on something that is supposed to be due by email in less than an hour.

I started the day with severe fatigue that didn't decrease after two cups of caffeinated tea, extra B-vitamins, and a prednisone (to help my poor adrenal glands out since my pituitary gland doesn't know how to do "proper" stress responses).  The severe fatigue left my brain just barely able to get to work and be at work, and every attempt at working on a project left me with my eyes trying to close (combined with the fact that I'm trying to do a non-traditional project, and the feedback left me wondering if I had enough time to either fix what I was doing or scrap it and do something completely different but in the realm of more traditional scholarship).

I'm left with a lot of panic, both panic at the project itself and panic at my body/brain's inability to actually do this work right now.  I feel like my body is trying to tell me that I shouldn't have taken classes this semester, that I shouldn't have gone to work, that I should have listened to the surgeon's advice to take 3-6 months off both work & school (note:  I really don't know why I split work and school these days.  At the doctoral level, my schoolwork is my work;  however, since I don't receive departmental funding, I have an outside graduate assistantship (what I usually refer to as formal work right now).

I'm trapped between academic time and crip time.  I'm petrified of the aftermath of sending an email saying that my work is going to be late, partially because I know that it probably won't be sent until tomorrow as I'm working on a wicked sinus headache (hello North Carolina pollen....or a cold that I may have picked up with my overtaxed, underperforming immune system).  The intellectual work that I have done on this project is all in my head.  There has been a lot of labor done, but it's not tangible for an instructor to grade.

I apologize for having a string of blog posts that are less-than-perky about my situation (I promise that there is a happier post that will be up after the semester is over about my weird home mods to make this recovery more manageable!).  This healing-while-having-faulty-physiology thing is a rough road filled with potholes.  Hopefully the fabulous people in my life will continue to be patient with me :-)

Eleven weeks

Me & my nerdy "Innsmouth Academy" mug

I've meant to blog, but a combination of fatigue, trying to stay on top of school, and get back to work have kept me from doing much "extracurricular" writing (or really much of anything fun that doesn't involve laying in bed or on the couch).  Because of the surgery, I've had to learn to do a lot of things while laying down....doing schoolwork for instance.  I think that's been one of the hardest things to cope with honestly.  I don't work well from home, so to be forced to not only work from home but ALSO work while laying down (without falling asleep) has been incredibly frustrating.  Heck, this post was started several days ago but is just now getting finished and published.

I've also struggled with what to say at this point.  I'm still in a lot of pain, but I am doing better.  I'm walking with a cane outside the house, but have been unable to use my wheelchair because I cannot sit upright long enough to make it a useful form of locomotion.  I haven't hit ER-necessitating levels of pain (thank goodness).  I would have to say that I'm at where I was about a year ago...taking prescription pain meds a couple times a day but able to walk short distances (about a block, maybe two at most).  The pain still interferes with my sleep, despite medication.  My balance is better, although I've lost even more feeling in my legs post-op (some of that may be temporary though).  I now have muscle spasms in my legs, which I didn't have before the surgery....but hopefully those are temporary as well.  Any nerves that were touched during the surgery, even just to move them away from the surgical field, get to have an unhappy synapse party for months after the surgery.  Any nerves that were freed (like the smashed nerve that the surgeon found), will take an extremely long time healing....if they heal at all.

This is where my body gets really complicated by my birth defect.  Since I'm not on the growth hormone replacement I ought to be on to treat my hypopituitarism & pituitary dwarfism, my body is going to take even longer to heal all of this mess....the cut muscles, the angry nerves, the vertebrae that need to figure out how to make friends with a chunk of cadaver bone to create the fusion, the vertebrae that now have titanium screws as uncomfortably close neighbors.  This was one reason why I tried to avoid the surgery for as long as I could....I knew that my particular biological reality would make this really difficult and take much longer than someone with "normal" physiology.

My STANDart poster with my racing bike

I think the hardest part of the whole ordeal is just wondering what my life will be like in the future.  Will I still need a wheelchair for longer distances?  Will I be able to walk without a cane?  Will I ever be able to run again?  Will I ever be able to use my beloved racing bike that sits underneath my house (that I still can't bring myself to sell).  Will I ever get back to powerlifting or Olympic weightlifting?  Bellydance, hooping, African dance, spinning poi, kickboxing, Crossfit....  Will I ever be free from prescription pain medication?  Will I ever have my full mental faculties back, free from pain & medication (even for small chunks of time to do my scholarly work)?  When will the fatigue lessen to a level where I can do more than just work and go to classes?

I'm trying to not feel bad when people ask me how I'm doing.  I had the most progress the first month, and it feels like I've been in a holding pattern since then (I know intellectually that's not true...I'm able to sit for longer periods of time and I've restarted physical therapy).  I still have to decide what to tell people when they ask how I'm doing.  Do I go with my usual Minnesota-nice and say "just fine" when I'm struggling with the feeling that my body is trying to get rid of the hardware Alien-style?  Or when I can't get out of bed without taking pain meds, to just be able to get up and get moving?  Do I pretend that I'm making more progress than I am?  So many of the questions are the same as pre-surgery, and that just makes the emotional component of healing harder.  From my completely unscientific putzing on the Spine-Health surgery forums, it seems like weeks 10-16 are the ones where the depression and anxiety hit the hardest.  So many questions, and so little (comparatively speaking) progress.  This is the real hard part of recovery.  It's like hitting the wall in a marathon.

For now, I'm just trying to keep on keeping on.  I'm struggling with a work/school-life balance as I heal...my scholarly work takes so much extra effort that I find myself wanting to use any "spare" energy to actually enjoy myself (shock & awe! grad students have fun??).  Any low-energy free time has been spent with the great American past time: TV (via Netflix & Amazon Prime on my iPad).  I'm twitching to get out of the house and work out, go to a coffee shop and write, hide in the library and read....but my life is on crip time, and crip time does not live harmoniously with graduate student/scholar/worker/"normative" time.

Now, my friends, I need to get horizontal and my brain is too foggy to keep trying to write coherently.  As the journey continues, I'll try to write more often....but it is the last month of the semester and I have a lot of work to do if I'm going to manage to get all my work completed (the goal is to not take an incomplete in either of my classes).  I realize that trying to stay in school this semester was probably not my smartest choice from a health standpoint....but from the good old American fiscal standpoint, I had no choice.

On a lighter note, if anyone has suggestions for things to watch on Netflix or Amazon Prime, feel free to post a comment with your suggestions :-)

Two weeks old

A few things that make recovery more tolerable

Two weeks ago I had my spinal fusion surgery.  It's been surreal.  Sometimes it feels like more time has passed, and sometimes it feels like I was just released from the hospital a few days ago.  I've realized that those feelings of a weird temporal nature are pretty closely tied to how much pain I'm in, or how well I'm getting around, or how much I'm sleeping (I still sleep a lot, but I've not managed to sleep more than 3.5 hours in one stretch yet).

I am slowly getting better.  I haven't had problems with my left leg since the surgery....not a surprise as the surgeon said that nerve was absolutely crushed.  I do have pain sometimes where that nerve starts, but it's sporadic instead of constant.  I figure that's probably a sign of it healing.  I am having some issues with my right leg with spasms and numbness, but pretty minor compared to everything else.

Most of my pain is in the lumbar area of my spine or in my left glute, and it's been interesting experiencing the different kinds of sensations.  Bone pain versus nerve pain, numbness at the incision site, extreme itching on my back, stiffness in my legs, a "stuck" feeling in my low back.  The part that I'm finding the most frustrating is that I'm still relying on pain medication to get me where I'm at.  I was really hoping that I would be tapering to a lower dose by now. 

Although the pain is still barely controlled, I try to stay positive and think about the things I am able to do.  I usually walk around my home without the walker.  I can get up and down my front stairs without a huge increase in pain (although it will wear me out).  I can stand long enough to make simple meals.  I can sit in my desk chair to type blogs.  I managed to go to class on Monday for 2.5 hours (which felt good at the time but ended up being way too much as I spent most of yesterday in bed, in pain, and cranky).  I'm probably going to part of my class tonight, but tell the professor that I won't be able to be there for the entire 3 hours (I'm aiming for 1.5).

There are a few things that have really helped me get to this point in my surgery recovery.  Several of them are shown in the photo I have on this blog post, and several of them are suggestions from the Spine-Health.com surgery forums.  First of all, the satin sheets have made getting in and out of bed exponentially easier (particularly with the restriction of "no bending, twisting, or lifting").  They also feel delightful even when I was restricted from taking a shower!

The bathrobe and microfleece blanket are just snuggly, although the bathrobe is fantastic post-shower to help air dry one's body (terry is recommended, but was out of my budget).  Showering, even with the assistance of a shower chair and changing the shower head to a detachable one with a hose, is still a time consuming, pain-filled, and exhausting activity.  Having a bathrobe that can help you air dry helps to keep one from breaking the "no twisting, no bending" rule by towel drying.

Slipper socks with grips on the bottom were part of my usual at home lounge wear before surgery, but have become more important while I recover.  I have hardwood floors in my home, and slipping would be very very bad.  The grips also help get traction for changing position in bed with the satin sheets.

As for the other big thing that has helped (other than occupational therapy gadgets like the shower chair and grabber) is my iPad.  It's a refurbished first generation model that I bought last year because of my worsening spine issues, but it has become a huge help.  I have a medication reminder app, I have Netflix and Amazon Prime to entertain myself, I have audio books for those times where the medication makes it hard to physically read, I have DropBox for the pdf's I need to keep up with my schoolwork.

******

I see the surgeon for my first follow-up appointment on Friday.  I fully expect to be scolded for going to class without asking him first, but he knows I'm a driven individual.  There is a part of me that wishes I could have taken a leave of absence from my PhD program to focus on healing, but I think having my classes to work on (albeit independently so far) have helped keep me focused....and have kept me from trying to push too much physically (which I'm having trouble with anyhow!).

Hopefully the next two weeks bring more positive changes!

Surgically modified scholar!

X-rays of my lumbar hardware

I had surgery on Wednesday, January 16th and spent until Saturday afternoon (the 19th) in the orthopedic wing of a local hospital.  It's been a roller coaster but I have absolutely no regrets right now.  Once my pain was under enough control that I could think, I could tell that a huge component of my spine instability was gone.  No more shooting pain down my legs and no leg spasms.  I was in a lot of pain, but it was different....and sometimes all it takes for a ray of hope to bust through is CHANGE!

I've been trying to put together a blog post about the whole experience, but my writing has been so disjointed that I'm leaving all of those notes for the possibility of writing something more scholarly about the whole ordeal (I'm a graduate student...I'll do a lot for lines on my CV!).  It's been hard and surreal.  I'm sleeping a lot, but never in long chunks.  I'm still clock-watching for pain medication (on an every four hour schedule), but I don't need the walker in my house as much.  I've only left my house twice, but have found that the line between "doing ok" and "dear Dog*, I've overdone it."

It's also been hard to try to get my scholarly work done.  The semester started last week, but most of my actual work has been pretty superficial.  It's hard to read and engage with an essay with a medication haze, so I read in one page chunks.  My writing process comes in fits and spurts, and many times needs to be revised and rewritten several times (this blog post has been in the works for a week, for example).  It's not so much a matter of physically writing as I have a laptop that can be used in bed and Dragon Naturally Speaking with a wireless headset to get thoughts out.  I'm just having trouble doing the cognitive work.

Saturday morning breakfast scholar!

It's getting better slowly though.  I'm hoping to be physically back at my classes this week, even if it means I'm only there for a half hour or hour.  I have my first official post-operative visit with the surgeon on Friday, so I'll get to find out first-hand how everything went.  I'll also be asking a lot of "it is this a normal part of the recovery process?" questions (including some questions involving how permanent some of the nerve damage might be).

Thank you to everyone's well-wishes on this journey.  As I dig through my schoolwork and my various notes about the surgery, there will be more blog posts for you all to read (and maybe more silly photos of me snuggled in my leopard print bathrobe)!


*=Dog is one of my terms for diety, the divine presence.

Becoming cyborg

My mantra as of late (text in alt tag)

I've taken a bit of a hiatus from writing lately because I've been in a fight to get effective pain management and a date for my spinal fusion surgery.  My mental and emotional resources have been pretty drained, which led to me not writing here and having trouble finishing up my fall courses.

I finally have a surgery date.  Wednesday, January 16th.  It's the first week of classes and I'll be missing the first meeting or two of both classes and trying to work independently while recovering.

I'm excited, scared, frustrated, concerned....so many emotions.  I've written about how I'm trying to postpone surgery because of the risks of pseudoarthrosis (where the fusion doesn't actually fuse).  I've read a lot of horror stories about how surgery made certain problems worse....but my spine has become more unstable and I've needed to do something about it for a while.

Thankfully, I've found some success stories online recently.  People saying that their nerve pain was immediately gone.  Some folks have had rocky recoveries that at least lead to a higher quality of life.  I'm hoping that I stop having the bobblehead feeling in my low spine, and hoping for less pain.  I'm ok if I'm still a part-time wheelchair user because of the nerve damage making my balance & proprioception wonky.  I don't expect to be pain-free from the surgery, and my surgeon's physicians assistant confirmed that this won't make me pain-free.  I'm just hoping that I can get to a level where I can do my scholarly thinky work, not be constantly derailed in my speaking and writing, and have hope that I can do any of the jobs that my PhD will open up for me in the future.

I know it's risky, but I have hope.  If nothing else, I'll have a conversation piece to get people thinking about cyborg theory!  Or I'll just keep making bad cyberpunk jokes about the screws & rods that are part of the surgery.

(Not quite) the end of the semester

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!

On being an academic with disabilities

A sign on one of the elevators on campus

Since the fall semester just started, I've been reflecting on how my life might change going from working on my masters degree to working on my PhD.  I recently read an article from Academe Online entitled "Chronic Illness and the Academic Career" which has made me really think about the consequences of being pretty frank about my spine mess along with the rest of my interesting physiological issues.  I'm pretty frank about the fact that I will be taking six credits a semester (baseline full-time for grad school) because of pain & related issues.  Life for me runs on what some folks have dubbed "crip time."

Running on crip time can impact my academic life in a number of ways, but for me is most apparent in my writing. Just like Sharon from After Gadget, writing takes extra time because of the dark miasma that is chronic illness...particularly writing that is coherent.  Like her, I usually have several blog posts percolating, making sure that my pain or pain-med addled brain (the usual dichotomy of my existence lately) has made something that makes sense to the general populace, doesn't ramble or derail too badly, and I'm willing to post to everyone that might see it.

Scholarly work is like these blog posts in this respect...they need a lot of TLC because sometimes a sentence or a paragraph will make sense to me when I write it, but make absolutely no sense later.  Most of my papers are proofread by friends (as one friend so lovingly stated, "I can see where you went from 'I know Science!' to 'yay pain meds'").  I cherish my scholarly community for our collective proofreading, and have traded drafts of papers with folks across the planet

I'm also very open about the fact that the job market is pretty dismal for tenure-track professor positions, and with my medical needs (both spine-related and birth defect-related) I absolutely cannot live without health insurance...which means being open to working as an administrator within the university setting.  This means I cannot take adjunct positions until a tenure-track position comes available as adjuncting is much like being an independent contractor.  If I were healthy and not disabled, paying for health insurance out-of-pocket wouldn't be a big deal....but that's not how my life is.

Honestly, I wonder how much of this openness comes from an internalized need (due to internalized ableism) to justify my use of adaptive aids like my cane,  wheelchair, use of the elevator, or my parking placard.  I wonder how much of it is related to the current "war on obesity" and how that impacts the myth that all fat people become disabled by their fat (for an awesome post on this, check out this post entitled "Fat People on Scooters" from Ragen Chastain's Dances With Fat).  Essentially, bodies are not equipment (which is why the photo I posted bothers me so much.  This is posted on an elevator on campus) although sometimes my body needs equipment to live life to its full potential.

This post was pretty rambly as I tried to wrap it up before my first day helping out as a TA for an undergraduate course my advisor is teaching.  So I'll leave you with this YouTube video entitled "Shit academics say about access:"

New blog, not really an old journey

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

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

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

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

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

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

Welcome to this space!
~Casey