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!).

Nerdlyweded!

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

Post-wedding selfie in the hotel room

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

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

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

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

Our view from the Excalibur hotel room

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

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

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

Week 4 of the Cyborg Dance Projekt

My crutch plus hip fringe

I was in Minnesota from July 2nd to the 9th, so I missed two weeks of the project.  Since I didn't dance at all (but did watch bellydance at CONvergence!  Posts coming later this week on the convention), I'm counting this as week four!

Photo to the right shows a bronze forearm crutch leaning against a dance studio mirror with multicolored fringe hanging on the cuff of the crutch. Some of the fringe is almost as long as the crutch is tall.  The crutch is slightly reflected in the mirror behind it.

I've been having a rough week since getting back from Minnesota.  While I was physically active on vacation, I didn't do any dancing or physical therapy type things.  I also went right back to work without taking a day to recover from the trip.  Needless to say, my body did not feel like it could handle a dance class....but I knew my mind, heart, and soul needed it.

So I posted on Facebook that "I had a two week dance hiatus because of my trip to MN and it's been a rough several days because of pain....I'm still going to go to class, even if I have to sit my butt on the studio floor and pretend that I'm moving in my head, damnit."  My awesome instructor replied with "I'm sure I can figure out something for you to do on the floor" with a smiley emoticon.  When I saw her before class, I let her know that I was being a little dramatic and just needed to get thoughts out, but that my two week break from dancing showed me that my little Projekt was doing more good than harm (I really wasn't sure if I was just being stubborn because I wanted to dance or if I was seeing some sort of biomechanical benefit along with the pain).  I also realize now, in retrospect, that I had taken prescription pain medication before class, so I think I was being overly chatty and rambling.

Sure enough, my gimpitude inspired a seated drilling class where we focused on really isolating some of our body parts.  Necks, shoulders, chests, even a little hip and glute work (which amazingly did not irritate my spine like a lot of glute work does...probably because of less focus on the gluteus maximus and more with auxiliary glute muscles).  We ended standing with a fun little choreography that she teaches her beginner students and stretching to cool down.  While I had a few balance issues that were pretty easily corrected with a wider stance, my pain level was pretty well under control with the medication (sometimes medication means I'm less mindful of my body's limits and I'll push too far because it doesn't hurt "too badly").

So far, I think the Projekt is a success, although it has caveats.  The real test will be to see how well I can perform, but I'll find that out at the end of the month when I dance Arabian Spices with two of the instructors at Twisted Dance Studios for the 10th anniversary of Sahira's Arabian Spices choreography.  I still don't know if I'm going to have to learn two versions of the choreography depending on my balance issues that day (one that is with the crutch, one without), but I have fabulous people that are supporting me through this!

*zaghareet*

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.

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 :-)

OOTD: casual Friday (on Thursday)

I'm wearing lipgloss!

I'm posting on my laptop, so I don't have my horde of Paralympics links to share with you today.  So I'm going to just post two pictures that I took yesterday.  One showing off my hair & makeup, the other a full body shot of my outfit (I'm wearing jeans...I'm not completely converted to skirts, but I can't resist wearing jeans to work when I have the opportunity).

The first photo is a self-portrait headshot of my haircut & color that I got at my local Aveda salon.  This is part of my self-care regime that I've been doing for a while (it started with my inability to dye my own hair and became something that contributed to my mental well-being).  Last time I got my hair done, my stylist put some lip gloss on me that resulted in a lot of comments from coworkers and friends.   So I decided to pick it up at the appointment.  I don't think I got a good photograph of it, but I like it.  I'm feeling somewhat motivated to learn some techniques for other makeup.

Work bathroom self-photo!

As for the outfit, it's pretty darn casual.  The jeans are an older style of Right Fit jeans from Lane Bryant (oh how I wish they hadn't redesigned them!), the jersey cardigan from Old Navy, the t-shirt also from Old Navy (their t-shirts have become part of my usual uniform as they are comfy, fit comfortably, and work for both work & casual), shoes are from Shoe Carnival, and the cane is from Folding Sticks (the only place I've found with a folding cane shorter than 32").  The watch is my red Polar heart rate monitor that I used to use for spin classes & triathlon training.

I'll probably have more actual content in the next couple days, but my Labor Day weekend is currently taken up with a little bit of birthday celebration, research, and schoolwork.  Have a great weekend!

Back from Gen Con!

Me cosplaying as Oracle posing with Jennie Breeden of the Devil's Panties

I just got back from Gen Con (aka the "best four days of gaming") and I'm exhausted.  I thankfully had some pretty uneventful flights with Delta Airlines (so I probably won't be posting a "Flying with Wheels" post about them like I did for US Airways & United...and I'm pretty happy about it).

This was my first Gen Con, and it was pretty exciting.  Because of my experience with using my cane at CONvergence, I decided to just bring my wheelchair.  I'm really glad I did, even though the carpet in both the hotel & the convention center were hell on my shoulders.  This was the biggest con I've ever attended (at least 5 times bigger than CONvergence) and was spread out over the entire Indiana Convention Center plus all of the neighboring hotels. 

I made this scalemail dice bag!

Trying to alternate between wheels & a cane just wasn't going to happen because of distance.  I also wouldn't be able to guarantee when I was going to suddenly run out of spoons, something that could have kept me from attending events that I had prepaid for (like a Shadowrun Missions game, a Pathfinder Society game, a NASCRAG charity game, and a scalemail dice bag crafting workshop).  I also didn't want to be doped up on pain medication because it impacts my cognition & creativity...traits that I need to have fun while gaming.

Bringing the wheelchair also gave me a quick and dirty way to do a little cosplay, something I've wanted to do for a while but hadn't managed to put together a costume that is flying-friendly.  Armed with my wheels, a Batman logo shirt, a headset, and my iPad with Batman logo on the back, I cosplayed Oracle, aka Barbara Gordon.  She's one of the few comic book characters that uses a wheelchair (the only other one that comes to mind is Professor X from the X-Men comics).  Since she's not generally "in the field" much like other heroes, she doesn't have a specific costume, which makes cosplaying her both easy (minimal props/outfit) and a challenge (trying to be recognizable as her instead of just a nerdy wheeler). 

Crosswalk in downdown Indy with accessible lane

Despite the carpet, the difficulty I had finding elevators in the skyways, and the problems trying to navigate crowded halls full of distracted people, it was a pleasant trip.  There were times where I would find other wheeling folks (particularly other manual wheelchair using folks) and we would just smile at each other in between hard pushes to get down the plush carpeted hallways.  A friend that joined me for the con says that the carpet didn't feel padded from a walking standpoint, but I had to ask her to push me a few times so I wouldn't give myself a rotator cuff injury...and it led to an interesting discussion about universal design.

I also had a chance to meet a few folks that I've only met online through our shared geekery of City of Heroes (an MMORPG).  Meeting up with them was a little difficult just because of the barely accessible skyway, slow-as-molasses elevators, and the normal difficulty of navigating restaurants that have tables and chairs too close to each other for easy wheeling (I've had to learn to speak up and be more assertive to get through these situations...it's still hard for this introvert though!).

I'm planning to go back next year, finances and work willing.  I have plans for making some of the stressful things more manageable, better plans for hitting up the exhibition hall in a more relaxed way, and ideas to make the most of my time & energy without feeling trapped in a strict schedule (especially since it's the weekend before the semester starts).

Wheee!

Re/becoming a dancer

A woman doing a veil piece in a wheelchair

Late last week I received an invitation from one of the owners of Twisted Dance, a local belly dance studio, to join them for a video shoot.  I've been thinking about trying to bellydance in my wheelchair for a while, so I decided to drop an email to the person that sent me the invite.  I wanted to make sure they were cool with me using their event to try dancing this way, and if they were cool with it I needed to make sure the building was accessible.  I got an enthusiastic reply back with instructions on how to get to the elevator (the building is pretty old, so it was retrofitted to be accessible).

I'm not going to lie, I was nervous.  I'm an introvert by nature, and I get nervous in situations where I could be the center of attention or be the oddball in a group.  I prefer to be in control when I know I'm going to be the odd duck (I have a shirt that I bought when I first started using adaptive aids that says "I do my own stunts" because I'd rather diffuse staring with humor).

Friday night I dig through some of my belly dance gear.  What do I want to wear, what am I comfortable wearing, can I wear a hipscarf without getting coins or fringe stuck in the spokes, do I need any props for the video shoot (we were doing mock/mini classes for a videographer for promotional purposes)?  I settle on a pair of workout leggings that I used to wear for dance classes, a short skirt over the leggings (in lieu of a hipscarf because of the spoke concern), and a plain shirt.  I find my practice zills (a set of Saroyan zills) and my silk veil, both just in case.

On Saturday, it's raining and raining hard.  I'm really concerned about bringing the chair because I don't have a good way of cleaning the tires to make sure I don't mess up the floor.  I have a towel packed in my bag just in case I need to try to dry off the tires or the frame, and just pray that I don't leave tire tracks on the studio floor.  I decide to walk the chair into the building with my cane because I don't have a folding cane and trying to wheel with a cane plus a bag plus deal with non-hydraulic doors is a pain in the butt.

I get to the elevator without much problem, and it spits me out behind the studio near the bathrooms.  I feel a bit like I'm sneaking into the studio since the main entrance is near the stairs.  I open the back door and park my chair to let it dry from the rain, and hobble with my cane to the front lobby of the studio to check in.  I chat, get settled, talk to the owners & teachers to give them a heads up, and everything gets started.  Thankfully my chair dried off while I was socializing, so no wet tracks on the floor!

We get warmed up and do various movement drills.  I realize that I probably should attach the wheel locks to I don't roll.  I wince every time my seat cushion makes a weird noise.  I figure out that while I can do some seated hip movements, they still hurt (which is a pretty major "duh" moment because it means the unstable joint is moving...but I'm stubborn).

 I ultimately realize that while taking dance classes might take quite a bit of modification on my part and willingness for an instructor to let me do my own thing during lower body movements, I can still belly dance.  It'll take some figuring out how to modify some movements, especially if I'm learning a choreography with non-wheeled dancers...but it's doable.  I also have to be mindful when I'm choreographing or being choreographed to make sure I have options for my less able days.

The day ended with some awesome chitchat with some of the teachers & owners of the studio, talking about the picture I have above (and a video that's somewhere on YouTube with the same dancer), talking about the logistics of dancing with a wheelchair (like getting a veil stuck), the fact that there is one company that makes wheelchairs specifically for dance, and my promise to the instructors & owners that they would see me more often now that I know that this will work.

Hooray!!

My next dance adventure is going to be reviewing a dvd for this blog called "Chair Aerobics for Everyone: Chair Bellydance."  I received a review copy of the dvd, so we'll see how it is.  The weight loss lingo on the box bothers me as someone that comes from a Health At Every Size standpoint, but maybe the instructor will have more of a holistic approach to fitness/movement.

Being geeky & disabled

My fist-sized d20

One benefit of being more visibly disabled is meeting other folks with disabilities.  This felt especially true when I volunteered for a significant chunk of time at a convention.  So CONvergence, a general science fiction and fantasy convention that is held in early July in Minnesota, ended up being this really neat place for me to interact with other geeky crips and the nerds that love us.

While I wasn't so easily pegged as disabled when I worked at the Registration table (my cane was tucked away since I didn't have to get around), I was very visible when I was on badging duty.  For those of you who might not be familiar with the term, all it means is I sat at a designated area and made sure that the people going past my station had visible and authentic con badges.  This is one of my favorite places to volunteer at a con because it means that I get to talk to a bunch of people, see tons of costumes, and contribute to the fantastic organization that runs the con.

Depending on how I was doing with pain, wobbling, and feeling my legs or feet, I was either using my flame cane or my wheelchair.  If I was hobbling it, my cane was usually in my lap (which got some great compliments or amusing comments, like "do the flames help you walk faster?").  The day that I spent most of the time on wheels, I either stayed in my chair (because I wasn't going to transfer to a less comfy chair) or transferred to a big comfy chair with my wheelchair next to me.

It was fun to talk to the other geeky gimpy people that were around.  Some folks had awesome adaptive aids, like red forearm crutches and other folks with flame canes.  One woman had her rollator dressed up as K9 from Doctor Who.  I chatted about all sorts of disability related stuff, from life as a part-time wheeler to Push Girls to WisCon (a feminist sci fi con that uses universal design) to "the best crutch tips ever" with a writer Haddyr Copley-Woods.  We both admired a compact motorized scooter that another patron was using called a Travel Scoot (it weighs less than my manual chair!).

A different person later that day who I'd badged several times commented on how people don't get that wheelchair users want to sit in something different sometimes (as I was sitting in the "badging" chair with my wheelchair next to me).  To have someone else around, even a stranger, that you can talk about how awful wheeling on carpet is, what equipment can make a smoother ride (Frog Legs suspension forks), or just kvetch about DC Comics' reboot of Oracle/Barbara Gordon and how having one less disabled superhero in the comic book world hurts...especially because there seems to be a lot of geeks with disabilities in the world.

I also learned how to navigate a dealer's room on wheels (very carefully yet assertively so I wouldn't get myself trapped...being waist-height to everyone can be rough) and discovered that the prevalence of canes-as-fashion (like in steampunk and neo-Victorian costumes) makes it so people don't realize that you're using an adaptive aid and leaning on that cane (thankfully I didn't fall the couple times this happened).  I was amazed at both the amount of disability awareness and simultaneous unawareness that seemed to be prevalent in geek-space.

In less than a month, I'll be at GenCon in Indianapolis, the biggest gaming con in the U.S. and I'll find out how my experience at a mid-size con of about 6k people translates into a 4 day event that hosts more people than my university has for a student population.  I'll also have another "flying on wheels" post about flying with Delta Airlines, and probably more griping about the TSA.  Maybe I'll have more awesome conversations with gimpy geeks while we roll dice and role play :-)

Flying with wheels, part 1

Clouds!

This is going to be a bit long, but I think it's important to have a detailed account of flying with a wheelchair...something I couldn't find before I made my first flight.

On July 4th, my SO and I flew from North Carolina to Minnesota to go to CONvergence and to visit my friends and family that are in the area.  It's my annual trip home, partially do to finances and partially due to my spine stuff (a holiday trip includes a 4.5 hour drive one way to visit the rest of our extended family, and flying plus that much driving would make my spine very angry, and ruin the trip for me being laid up and not able to socialize).

Anyhow, this was my first time flying with a wheelchair.  Last year's trip I flew with forearm crutches and a folding cane in my luggage.  The year prior was just with a cane.  The year before that my spine wasn't interfering with my ability to balance, so it was sans adaptive equipment.  I tried to do some research about flying with a wheelchair.  What requirements do the airlines have?  What are some tips that other wheelchair users have about flying with a chair?  What can I do to make it so my wheelchair doesn't come back to me mangled?

Most of the information I found online was about flying with a power chair or scooter, not for someone with a manual chair.  The information I found about manual chairs mostly referenced folding wheelchairs not rigid frame chairs.  With the help of some academics I know that use chairs and the bits and pieces of information I found online, I decided to just be extra early for my flight and hope for the best.

So we roll in to the GSO airport (after the longest and almost steepest ramp I've ever rolled up, sweat dripping and glasses fogging in the North Carolina heat).  I checked us in online through the US Airways webpage, but there was no place to tell them that I was a wheelchair user, so I went to the ticketing counter to ask what they needed me to do.  They had me fill out a bright green tag for my wheelchair with my name and contact info, and approximate weight of the chair.  They were kind, courteous, and professional, asked me if I wanted any assistance to get to the gate.

Getting searched from the TSA with adaptive aids is always a pain in the neck, no matter what you use it seems.  Wooden cane seems to be the least problematic, but anything metal...just expect it to get thoroughly searched.  Since I'm ambulatory, I opted to stand in the new "Advanced Imaging Technology" machine that is reminiscent of a Star Trek transporter (you have to be able to stand still, feet on designated spots, with your arms raised for about 30-45 seconds to use this).

We roll through without too much hassle and with plenty of time to just relax and get a drink.  The gate attendants double checked with me to make sure I didn't need an aisle chair, and I double checked that they realized that I have a rigid frame chair.  I rolled down the jetway (whee!), took off my seat cushion, and gave my chair to the gate checkers.

The flight attendant was amazing.  She noticed that I was dropping off a wheelchair, and when we landed in Charlotte (CLT) she made sure that we didn't get up until my chair was on the jetway.  My chair came back without a dent, scratch, or issue!  I decided to walk my chair up the jetway with my cane because of how steep it was.  We get to the gate, and the attendants asked if we wanted them to hail a motorized cart or if we needed any other assistance.  I declined as I really like moving around and exploring airports.  It also meant that I got to be naughty and use the motorized walkway when it said it wasn't recommended for wheelchairs or strollers (it was a mighty carpeted hill...not fun for a manual wheelchair user!).

We get to the gate and are just talking about nerdy things (mostly comic books, and specifically critiquing Marvel Comics going pink for the cure for the Komen Foundation).  A pair of lovely US Airways employees came up to me and asked if they could see my tickets, then checked to see if they could get us closer seats.  They did!  They also double checked if I needed an aisle chair.  They also chatted with me informally for a few minutes, showing some great customer service that I didn't expect to get (by the way, if someone at US Airways is reading...I have their names and I really think they deserve major kudos).

Boarding was much the same as in GSO, and it was again a really smooth and enjoyable flight to Minnesota. The MSP staff were just as friendly and offered assistance, which was a great change from the flights I've made with forearm crutches or a cane.  Since we didn't check baggage, we didn't have to deal with the baggage terminals.  We picked up our rental car and went on our way to the Mall of America to bum around, then to the Sofitel Bloomington (one of the overflow hotels for the convention) to get settled (it wasn't an accessible room as their only accessible rooms had one bed, and we needed two because I had a friend staying with us for the con).

Long story short, US Airways is now my favorite airline.  They treated me well, treated my equipment well, and really went the extra mile to make sure that I was treated well.  I'm so happy with the service I received that I'm sending the link to the post to their customer service email and I sincerely hope that they keep up the good work!!

Self-soothing and disability

Self-portrait on my phone- newly dyed hair!

Folks, it's been a really rough couple weeks pain-wise.  I've had a couple bad workouts at the pool, I've had trouble walking due to numbness in my legs, and I've been just trying to cope with life as it is right now.  I've given myself a chance to just be...no attempts at going to the pool and swimming for 500 yards if I'm having too many issues.  I'm allowing myself to find movement wherever I find joy, and this sometimes means I play Rock Band on my Xbox for a while (I prefer the drums, but when I can't feel my feet very well, the pedal is hard), sometimes this means I play with the cats with a feather toy or laser pointer.  Sometimes this means I give myself a chance to just rest and meditate.

It's hard, this not-doing physical activity thing.  Even when I'm doing things I'm not particularly good at (for example, this used to be running, back when I could run), I'm still happy in the movement.  I like to be dancing, wandering, wiggling, expressing....just moving.  My body isn't cooperating and it's hard to cope.

So I've been coping through traditionally feminine venues, which for me is pretty unusual.  For example, I've been dyeing my hair since I was fifteen, but didn't start having a salon do it until this year.  My initial motivation for getting it professionally done was that I couldn't stand long enough or bend over the sink for the time needed to dye my hair at home.  I would also miss sections of my hair either due to pain-related attention issues or medication-related cognitive issues.  Since I love having red hair (versus my natural color that I call "rodent" and other people call "mousy brown"), I've decided to wiggle the room in my budget to get it done.

It's become a time for me to have someone pay attention to my body for reasons other than health problems or pain.  It's become a time where I have someone there to help accentuate the beauty in my round cheeks, my full lips, and my penchant for funky glasses.  No one at the salon pressures me to buy makeup (something that I'm pretty bad at doing, partially because of being blind in one eye).  No one pressures me to get my hair cut in a way that would take a lot of maintenance (something that I warned my stylist about...I'm not good at doing my hair, and with my pain, work, & school schedule, it's just not feasible...plus I just don't like doing it).  They make me feel good as I am.

Maybe that money would be better placed in something else (maybe a housekeeper or a PCA?), but being able to do this helps keep me in the mental space where I can keep working and can keep pursuing my PhD.  Sometimes it's the little things that keep us going.

Mission accomplished...5k on wheels!

Somehow, despite the nervousness, I managed to sleep last night.  I even managed to get right out of bed when my alarm went off (6am isn't too much of a stretch for me as I'm getting used to getting up for deep water aerobics).  I get everything gathered, get on the road, and get to the airport (where the race is being held).  I get parked, which was a little worrisome as I try to make sure that I have enough room to set up the chair.  I find the shuttles and breathe a sigh of relief as I see they're using the area transit buses for shuttles...which have to have wheelchair lifts or ramps in them (thank you Americans with Disabilities Act).  I'm also pretty darn early because I wanted to make sure I could handle any access snafus that might happen.

So I roll along looking for the sidewalk to get to the bus...and there's gravel, grass, and dirt.  I start popping a series of wheelies to try to maneuver (as I haven't mastered rolling while wheelied), and a fellow racer comes up and asks me if I want help.  I take it as I had the rest of the grass and gravel to contend with, plus the curb...I really didn't want to fall just getting to the race shuttle.  One of the drivers pulls away from the curb so I can actually use the ramp (hooray), and after a false start up the ramp because my handrim was on the lip of the ramp.

Tarmac has ridges! Ack!

A short bus ride later and we get to the tarmac.  My first hurdle was getting off the bus, as I didn't realize that I would need to wheelie the last part because of how low my footplate is....roll, catch, & fall out of the chair.  Thankfully, pain level was still a bit low and I got my feet back under me without too much issue (although some embarrassment).  After I get situated, I look down the runway, getting a little nervous.  Maybe I should have brought my iPod for music, even though I've never raced with an mp3 player before (it's against most racing organizations, like US Track & Field and USA Triathlon to race with headphones).  I roll along, and notice that the tarmac has ridges...ALL the way down the runway.  They're going to be perpendicular to my wheels...for 3.1 miles.  So this "flat & fast" 5k has now turned into something even scarier, and I start worrying about being able to finish.  I've also determined that I'm the only wheelchair user, so I'm getting concerned that I'm going to be some sort of spectacle (combined with a few dirty looks I got from women with more "traditional" running bodies).

I'm flexing the arms that will get me 3.1 miles!

Thankfully, the coworker that told me about this race finds me at about this time, so we start chatting.  Some of it about our respective racing histories, then about using the chair.  I told her I was worried, but worst case scenario was that I wouldn't finish the race...and since I've never actually DNF (did not finish) a race, I was ok with that as the outcome.  Right before we were lining up at the starting line (which we didn't find until about 2 minutes before it was supposed to start), I got her to take a picture of me, wearing my race number, clad in an Iron Girl hat (from the duathlon I did in 2007), and a Challenged Athletes Foundation tech shirt.

So the race begins and I'm finding myself being passed up pretty quickly by everyone, including some folks walking with strollers.  I keep cursing the ridges in the tarmac, and praying that my arms hold up.  I keep pushing.  At about the one mile point, the elite runners are now coming back to almost finish.  I eventually find my "sweet spot"....I'd push, the chair would reward me with a "whir," push, whir, push whir.  Ok, my body can handle this, so now it's just mental.  Endurance events are mental challenges, and I can do this.

The water station was about at the 1.25 mile point, and this was when some of the less elite but still swift runners were on the way back.  Folks were cheering for me "you go girl," "keep it going,"  "you're an inspiration!" (this one made me uncomfortable, but that's because of some discussions of "inspiration porn" in disability activist circles), and the like.  Push, whir, push, whir....and the turnaround cone.

Sometimes in a down-and-back race, that cone is either a savior (it's halfway done) or a buzzkill (I've only done half of this damn thing??).  Well, today it was a savior because it showed me something I hadn't realized about the course....it's on a slight hill.  I had so many problems getting to that point because I was going UPHILL.  No wonder my forearms were burning...I was pushing against the ridges AND a hill!  Push, whir, push, whir...I start zooming down (well, comparatively...it wasn't that much of an incline).  Since I'm able to coast more, I'm noticing that either the tarmac is sloped a little side-to-side or I'm not sitting quite squarely in the chair, which is making me curve.  I try to not grab the left handrim to straighten out, but start doing more of an alternating push with my arms, right push, whir, both push, whir, right push, whir...

At about the 2.5 mile point, a police officer on a bicycle comes up to me and asks how I'm doing.  Amazingly, I'm really not all that winded even though I'm working pretty hard.  He asks if this is my first race (I explain the yes & no situation), and end up telling him how there are specialized chairs for racing in.  He essentially tells me that I'm awesome, and leaves for a bit.  I notice my watch and see that I'm really not that far off my old running PR for the 5k distance, which gives me an added boost of energy.  The officer comes back and asks if he can have the honor of crossing the finish line with me.  I tell him sure, partially because at this point I notice that I've ripped open part of my hand from the wheel (I must have been scraping against the tire, but was so "in the zone" that I didn't notice).  We exchange names, and when the finish line is in better view, I dig in. 

The finish line, photo taken pre-race

Forget whir...push push push push.  I actually think I lost the officer in my mad pushing, but he's on a bike and can catch up, so I stop paying attention.  I get within view of the announcer, who makes a comment about me doing the race in a standard wheelchair.  I didn't hear all of it, but I'm pretty sure that he said that phrase a couple times, trying to impress upon the onlookers that this was hard, and this is not the ideal way to race in a wheelchair.  That made me beam...the announcer knew that this was the hard way to wheel a race, and wanted everyone else to know how badass this was!

My coworker met me at the finish line with water (thank you thank you!) while I kept talking to the police officer (who got his partner to come with a bandaid for the ripped skin).  People kept coming up to me, saying "good job" and the like.  Thankfully, getting back on the shuttle was less traumatic, although getting to my car was a bit frustrating.  The driver parks so the ramp goes in the grass, which beats trying to wheelie a curb.  When a couple guys ask me if I want help, I tell them to let me get to the fence for support to hobble, and let them get the chair to the pavement, which worked pretty darn well.

I'm happy I did it.  So happy.  I'm even pretty proud of my blisters and rip (I have a picture, but I'll spare the closeup of my filthy traumatized hand.  I think my desire for racing wheels has just increased though, and unless I get a grant from Challenged Athletes Foundation, Project Athena, or some other awesome adaptive sports agency, my racing will continue to be really sporadic in a standard chair.

Zoom :-)

Adventures in shopping: Target

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

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

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

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

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

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

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

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

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

Adventures in shopping: Best Buy

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

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

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

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

Wheels!

Bela perched on my back circa 2009

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

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

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

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

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

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

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