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!).

Cyborg Dance Projekt Week 7: Trying moderation

Photo 2009 by Dave Stagner Photography

Photo on the left is from 2009 when I danced at CONvergence.  It was taken by Dave Stagner Photography.  It's black and white and shows me standing in a layback pose with one arm above my head with the other at my chest.  I'm wearing a black cropped dance top with long sleeves, black flared pants, and a hip scarf with a tiger on it.

Note:  I probably need more photos of me dancing some day for this blog!  If any photographer types want to get their name up here, hit me up....I've done a little amateur modeling for other local photogs, and I love it.

After last week's troubles, I'm making a more conscious effort to be gentle in this project.  People that know me know that I tend to have two modes of operation: on or off.  I first had it blatantly pointed out to me from my old kickboxing instructor, although I remember being praised for my "balls to the wall" type effort in most of my physical pursuits from triathlon training to Crossfit to dance (with doing 8-10 hour dance days in San Francisco in 2005).  I have a lot of trouble with moderation in physical activity, which probably isn't a surprise with blog posts about hating gentle physical activity or the 5k race I did untrained in my wheelchair.

I think some of this comes from dueling internalized ableism (from my birth defect-related experiences, like special ed gym classes in elementary school) and internalized sizeism (I've never been a thin person and have been bullied and harassed for being fat).  Some of it is just the sense of wonder that I get from learning a new task, pushing my body to its limits, or achieving various physical goals....I love the memories of the triathlons, the 150 miles of biking in a weekend, the polar plunge, the 40mph ride down a steep hill on my racing bike, the marathon dance classes....

Anyhow, I went to my friend Xavier's intermediate cabaret-style class on Sunday evening.  My bellydance background started with cab style, so I was pretty excited.  When I got there, he let me know that we were doing a Bozenka choreography that he learned at a master class.  When he said that, I knew that I would have to be careful to not overdo it...I knew that my brain would default to "learn the choreo at all costs!!"

My spine was being a little persnickety that night.  When we were warming up, I kept losing my balance (when you have spinal cord damage, sometimes standing is a balance pose).  I was a little concerned, but stood near the wall while bits of the intro were shown.  I decided to not do most of the fast spins in the choreography because it felt like a recipe for gimp-disaster (plus there's still useful muscle memory that can be gained by fudging movement!).

The one thing that I really learned is that it's hard to be careful when I'm being told to do something specific with my body (aka choreography).  My tendency is to force my body to do things it doesn't want to do (or shouldn't do biomechanically).  I have something to seriously work on if I intend to ever do choreographed dance performances.

For the other part of my attempt at moderation, I went back to classes on Tuesday but told myself (and my partner for accountability) that I would only go to two classes.  I would either do ATS 1 and 2, or do ATS 2 plus the intermediate tribaret class.  Since Melissa had a sub for her class, I stuck with ATS 1 & 2 (with the mental note that if my spine felt bad, I could stop...I was under no obligation to take 2 classes).

I did an OK job of being careful in the classes, and would crouch to watch movement explanations instead of following along (the value of mental rehearsal).  My spine was pissy that night, so I focused on trying to "fudge" movements in a way that was still readable to the other dancers as American Tribal Style is a group improv style that relies on visual cues to signal the next move.  I also tried to avoid leading as much as possible because of very similar issues I'm having with choreography....my brain is already focusing on not falling, keeping spine-safe dance posture, dancing, watching for cues, etc.

Finally, while not related to actual dancing but related to dance community, I'm using my Quickbooks knowledge in exchange for dance classes to help fund this project.  Not only will this help keep me in dance classes (at least 2 a week), but it means that I'll benefit from being at the studio more even when my body is being non-compliant.  These are people that I've known for most of my time in Greensboro, and these are people that have been awesome and caring when my spine got bad (including the wheelchair dance experiment).

The plan is to continue with the intermediate cabaret class on Sunday evenings along with two classes on Tuesdays.  I would love to add another day of classes, but between my academic classes (on Monday and Thursday evenings), my bookkeeping duties, and desire to spend time with my fiance and friends....we'll see what happens.

Cyborg Dance Projekt week 6: Four zills forward, a couple steps back

New elastic on old zills

Photo shows pale fingers with plain brass finger cymbals (zills) strapped on with white elastic.

I was feeling pretty ok yesterday, which for me means that my pain level was around a 5 or 6 according to the pain tracker I use on my iPhone.  My brain was a bit squirrely,  so I figured a good trio of dance classes would be pretty ok based on how I was doing (I was still in enough pain that trying to read or write was going to be difficult, but dancing....that I felt like I could do).  So I headed for the studio for the ATS levels 1 & 2 classes, with the possibility of my usual 8:15pm class to round it out.

The first class went fine.  I knew that doing bodywaves would be hard on my spine, so I did less of them.  I stood back sometimes and watched (because mental rehearsal is still part of rehearsing!) and sometimes I would hold the wall for support.  I felt ok (thanks in part to pain medication taken before class), so I decided to stay for the next class.

 ATS level 2 went really well, but I didn't have the chance to stand back to rest and take in information like I did in the first class.  I was having fun with a pair of zills that a classmate let me use (these beautiful Saroyan Afghani zills that I didn't think I would be able to play because of the size...but I used them the whole time!  She also showed me an awesome zill elastic trick using hair ties).  I was sweaty and happy, but trying to ignore that my spine was getting tired.

I stayed for the last class just because I wanted to...I knew my spine was getting tired, but Melissa is cool with me modifying anything I need to modify.  Instead of drilling, we've been working on musicality in fusion bellydance (shared vocabulary between cabaret and tribal styles using different accents or register).  It didn't take long for me to need to use the wall for support, or to squat while listening.  Towards the end of the class, my cyborg bits were just done and I sat on the floor for the last bit (but still danced).

When I got home, my body just started shutting me down.  First with wicked exhaustion, then with my right glute squeezing the nerve so hard that I couldn't put weight on it.  My partner had to help me get to and from the bathroom because it felt like I was being stabbed with a screwdriver in my rear.

It's taken me a few days to get that irritated nerve calmed down to the point that I'm not limping and wincing as badly.  I think the lesson is that three classes back-to-back, no matter how well I feel that day, is just too much for this aging gimpy body, at least for the foreseeable future.

Does your heart beat only for this person?

My claddagh ring on my left hand

The photo to the left shows my hand, a pale small hand with side fingers on resting on a black keyboard.

Those of you that know me personally probably already know this (the magic of Facebook status updates!), but I figured that a grand announcement on my blog was also in order.  On June 17th, I proposed to my partner and he said yes.

One of my reasons for writing this post was to really say something about why I proposed.  I also wanted to address where that puts me in the cogs of society's expectations of couplehood.

Ever since I knew that my partner and I were serious, I swore that I would not get legally married until I could marry whoever I chose, regardless of sex/gender.  This was important to me because I've dated people of various genders, and I felt like I was using opposite-sex relationship privilege just because I had it.  The reality is that I felt like I had to choose which parts of my identity I was betraying.  I have disabilities and I really need to know that if something happened to me that my partner would have the power to make healthcare decisions on my behalf.  I'm a working class person that doesn't have the finances to do the paperwork that would give me somewhat similar rights and benefits that marriage would confer with a cheap marriage license.  I had to hope that my health doesn't get any worse and that I wouldn't need to access Medicare (the US health system for the elderly and disabled that requires poverty to access) because of marriage penalties for disabled folks on SSI/SSDI.

In short, while I've chosen my partner as my beloved, I had to slog through intersections of classism, dis/ableism, and heterosexism to decide if I wanted to take the legal marriage plunge.  These decisions take some of the romantic heat out of a marriage proposal....but I think that this kind of analysis of "the personal is political" makes our engagement even more meaningful.

So for the fluffy details, we're going to get married in Las Vegas, Nevada and we're aiming for December 13th, 2013 (date not final though).  My partner has always wanted to get married in Vegas by an Elvis impersonator, so we're going for a campy fun wedding.  We're planning to wear geeky costumes (as we both want something that we'll be able to wear again, so cosplay was a logical conclusion).  We're inviting any of our friends and family that can make it to Vegas for the event.  I'm putting together a wedding webpage that will have all the details (including registries...Target, Amazon, and ThinkGeek, in case anyone is curious).  We're currently undecided about having a reception back in North Carolina....I'm still recovering from surgery, and the combination of time plus money is difficult in our lives.

So there's the big news *grin*

The title of this post comes from this link on Offbeat Bride.  It's a part of the Klingon wedding vows (if you ever doubted my geekiness....)

Flying with Wheels: Happy geek!

MSP airport, jetlagged at the baggage claim

For those of you that didn't see it, I have a few other "flying with wheels" posts that you can take a look at.  Here's last year's posts about my annual trip to Minnesota on US Airways and back to North Carolina on United and here's the post about flying on United to and from San Francisco.  I think as I fly more, I may add a link to my blog gathering these posts for ease of use.  These posts can get a little long because of detail, just FYI.

The photo on the right shows me, a pale fat woman, using a manual sports wheelchair, wearing jeans, a black shirt, a wide brimmed Renaissance-style hat, with a brass forearm crutch held between my legs and an army green purse.  The background is the Minneapolis-St. Paul International Airport baggage claim with strangers in the background.

I got back on July 9th from my annual trip to visit my family and friends in Minnesota (I started writing this as I got back...but my brain issues as of late delayed this).  Part of the trip is to spend 4 days at CONvergence, a medium sized sci-fi convention that I absolutely adore (it's about 18 times smaller than San Diego Comic-Con, just for reference.  CONvergence was just under 7,000 people this year). 

Because of a discussion with my partner and my good friend (both of whom were coming with this year), I decided to bring the hat (see last post on the awesome jaunty hat dilemma) as well as the wheelchair and one forearm crutch.  They both told me that they could help me with whatever carry-on items I wanted to bring with so I could deal with the crutch and the chair cushion (that gets removed from the chair before boarding and stowed in an overhead bin as it's too wide for an airline seat).

We were flying US Airways (my hands-down favorite airline because of how they've handled my mobility needs in the past) to Minneapolis with a layover in Washington, DC.  We checked some of our luggage at the ticket counter for ease, and had a pretty smooth check-in and TSA security process.  Learning from previous flights, I rolled up to the conveyor belt, deposited my bag, shoes, jaunty hat, and my crutch, and scooted close to the Star Trek-looking scanner.  I told the agent that I should be able to stand long enough for the scan.  He then gave me a wooden cane to use to get to and from the scanner while my things were security scanned (along with the wheelchair wipe-down for bomb-powder or drugs).  Despite my best efforts to not get frisked, my jeans were slightly bunched behind my knees and I got a partial patdown.

When we all got through screening, we had enough time to snag some milk so I could take some pain medication and muscle relaxers....but we slightly missed pre-boarding (I blame the carpet at the GSO airport....carpeted ramps are evil for manual wheelers).  It wasn't a big deal though because the gate agent got me my wheelchair tag quickly and without fuss, double-checked that I didn't need an aisle chair.  Since the plane wasn't full, the agent bumped the three of us to the first row!  That was awesome as the first row usually has immovable arm rests, which mean I don't have to fight my brain telling me that the human next to me isn't soaking wet with warm body fluids (hooray for nerve damage giving incorrect information *sarcasm*).

The first flight was uneventful as was the second.  Reagan International Airport in Washington, DC isn't my favorite one to navigate while gimpy because of the sheer number of elevators and escalators (my last trip through that airport involved around 10 elevators), we managed to have our arrival gate and departure gate near each other.  We had a bit of a scare at first because we thought my seat was in an exit row, but we managed to get that cleared up.  We were split up on this flight because of some check-in coordination issues (not all the tickets were bought at the same time), but I ended up dozing off watching episodes of Arrow on my iPad instead of being social.

Our arrival at MSP was pretty smooth as well.  Airline baggage handlers always manage to muck up the velcro on my chair, but both my partner and my good friend have traveled with me enough to know how to fix everything without my directing (perfect because I always have to find a bathroom when we land, regardless of length of flight!).

~~~~~~~~

Our trip back to Greensboro was equally uneventful.  We had two main frustrations.  The first one is that we didn't do the online check-in the day before the flight, so there was no way to change our seating assignment.  The second was that the MSP TSA (the gate security folks) usually fast-tracks wheelers in the security line because we hold up the line with our equipment and the extra frisking....that didn't happen this time.  I did get split up from my partner, but my friend was there behind me to help with my back, hat, and whatnot. 

Once we got to the gate, I prayed that the gate agent would be able to do something about our seating situation.  We were slightly split up, but my friend and I were in the very last row....which was pretty darn difficult navigating with my wonky balance and a crutch (thank goodness for pre-boarding for "special needs" so I wasn't falling into people).  The plane was too packed to do anything though, and I found out the hard way that I never want to be in the back row again because the seat was set at a permanent slightly-reclined position (I have to sit straight up....any leaning back puts pressure on nerves into my legs and causes severe leg pain and spasms).  It was a long flight, but it could have been worse.

Our layover was in Charlotte, NC, which is one of my favorite airports except for the carpeted ramps.  Thankfully my good friend thinks it's amusing to push me up the ramps while running (and she doesn't run quickly so it's not scary....although I don't have handles on my chair, so she has to be precise holding my backrest).  We had enough time to wander a bit and catch dinner (sushi!!) then wander our way to our gate....where I rode the moving walkway in my chair (I know it says not to, but it's fun).

Our short jaunt from Charlotte to Greensboro was pretty awesome.  The plane was maybe half full, so we got to sprawl out as much as we wanted to.  The flight attendant thought we were amusing (I blame the hat and the non-traditionally colored crutch).  I was happy that I got to sit next to the window, which is something that I can't do very often depending on who I'm traveling with and how my body is behaving.

Flying through US Airways has consistently been good with my wheels and adaptive equipment...it also helps that they are usually the most economical airline for most of my travel needs.  Thanks again US Airways & your employees.