Gimpy geek traveling problems

At the Carolina Renaissance Festival, 2012

Photo on the left was taken outdoors at the Carolina Renaissance Festival in 2012.  My partner and I are standing in front of a flower bush on a dirt path.  He is a light skinned with some visible stubble, wire glasses, with a green floppy hat.  He is wearing a turquoise pirate shirt with a plain collar, khaki pants, and brown shoes and is standing behind me with his hand on my shoulder.  I am seated in a green, black, and silver folding wheelchair without footplates, wearing a large brimmed leather hat with purple and green feathers.  I am wearing a similar shirt in black, black fitted leggings, and knee-high black and green boots that lace up the sides.

As I write this, I'm packing for my annual trip to Minnesota to see family and friends.  Part of my trip is to go to CONvergence, a sci-fi and fantasy convention (here's my post from last year about the con itself). As I pack, I'm realizing how much of my mental energy is devoted to adaptive equipment that I need to bring, and how much body awareness I need to try to make these decisions.

Since the surgery, I've used a variety of adaptive aids to get me through daily life.  Cane, walking stick, or forearm crutch for usual getting around (I'm starting to realize that the forearm crutch is what I really ought to be using on a regular basis as my wrist tendonitis is finally subsiding because of using it, plus it's more stable when I lose my balance).  Leaning on carts in stores or using my partner for balance for longer trips.  My poor sporty wheelchair has been sitting in my car gathering dust though.  I've been trying so hard to be able to tolerate walking with aids (one of my physical therapy goals) that I've been avoiding the wheels (the chair is also about 20 pounds total, which is 15 pounds above what I've been supposed to lift).

Anyhow, as a part of packing for the trip, I feel like I need to somehow have psychic powers in order to know how my spine is going to behave for the trip.  Do I hope for the best, keep the wheels at home, and stick with the crutches?  Do I prepare for the worst and just take the wheelchair?  Should I bring both the wheelchair and the folding cane so I have more choice (even though the cane is less stable and means less walking, plus the potential of it being kicked out from under me accidentally because I'm so short)?  Do I ask my partner and my friend to help be my pack mules at the airport so I can have a crutch and the wheelchair?

On top of just the adaptive equipment, I want to cosplay.  Cosplay can be a lot of fun, but trying to pack costumes and accessories for a flight can be a major hassle.  I'm slowly working on easily packed costumes (like the orange jumpsuit for a Misfits costume), but sometimes a person wants to bring something less easily packed.  For this trip, I really want to bring the jaunty hat that I'm wearing in the above photo.  It's big, especially with the feathers.  Under "normal" circumstances, I could just plop it on my head through the airport and tuck it in an overhead bin on the airplane.  However, this becomes another part of my flying-while-gimp dilemma.  It's another thing that needs to be handled through TSA, along with digging out my quart-sized baggie of toiletries, pulling out my laptop, fussing with my shoes, getting fondled by a TSA agent, having the entire surface of my wheelchair getting swabbed and tested, and then trying to get everything where I need it to be to continue on my journey (chair cushion & seat back put back in proper order, bag reorganized, shoes on, and traveling companions gathered).

It's a hassle, and I just don't know which battles I want to fight.  Maybe if I wasn't a part-time wheeler and part-time stick user.  Maybe if I wasn't an introvert.  Maybe if I didn't want to wear outrageous hats and costumes.  Maybe if my body were more predictable (hell, I'm not even asking for more mobile!).

I've decided to bring the wheels, but I'm undecided on both the cane versus crutch debate.  I'm still waffling on the hat as well.  It is a marvelous hat that I spent too much on at the Carolina Renaissance Festival, and I have so few opportunities to wear something that fantastic.  Should I bring it despite the hassles?

Week 3 of the Cyborg Dance Projekt

The first time I balanced a sword (2006)

Photo on the left was taken in 2006 at a small Renaissance festival in northern Minnesota. The background is a tent with warm-colored tapestries in browns, oranges, and maroon.  A doumbek drum sits on the floor near me.  My hair is shoulder length and light auburn.  I'm wearing a black tiered skirt, a black tunic, a silver belt with coins and bells, a large Kuchi necklace.  My hands & arms are shoulder height and I'm balancing a delicate silver scimitar on my head.

 On Tuesday, I went to the intermediate bellydance class that I've been going to at Twisted Dance.  The weather was absolutely dreadful, I was exhausted and in pain, and there was part of me that really didn't want to go.  I have this lingering fear that I will find some movement that will cause major pain, or will cause my legs to give out, or will give me that unnameable pain that makes me just burst into tears.  Dancing does still cause pain, and it does still relate to nerve irritation, and I am fighting pain that doesn't have an immediate "stop doing that right now" signal.

Despite a crummy day, I managed to get my butt to the studio with ye olde forearm crutch in tow. There were only 2 of us plus the instructor (maybe people are scared off by the drill-centricness of the class, or maybe 8:15pm is too late for most folks).  The class was pretty informal, but that helps because it allows me to pay more attention to my movement.

We warmed up, drilled mostly layering movements (mostly hip and shoulder shimmies with slides, pops, and figure-eights), and cooled down.  My hardware area gave me a few protestations that felt like they were addressed by making smaller movements.  I also noticed that I'm getting more flexibility back as well as it was the first time since surgery that I could touch my toes with straight legs (to give a point of reference, I used to be able to put my hands flat on the floor behind my feet).  While this is a victory on some level, it was a reminder about how easily my L4/5 joint can get messed up (I already have nerve-related signs that the nerves are irritated....I may need to get another fusion when that gets bad).

Later that evening, I had a pretty bad delayed reaction to dancing.  Every time I put weight on my right leg that night, it felt like I was being jabbed with a large flathead screwdriver in my glute.  That feeling has been on again, off again since Tuesday, but combined with more overall nerve crumminess (which I exacerbated by dancing and modeling on Thursday morning.

I'm toying with going to the same instructor's class tomorrow as she's teaching a sword class, but I'll need to see how my overall balance is before I try to take a class that requires balancing a dangerous-looking object on various parts of my body.  Even if I'm in a lot of pain, I'll probably end up going just so I can play with my favorite dance prop.

The Projekt will be on hold until mid-July as I will be going to Minnesota for my annual trip to see friends at CONvergence and my family afterward.  Expect a few "flying with wheels" types posts as I'm bringing my wheelchair.  My balance and walking/standing tolerance has been too inconsistent to just rely on a cane or crutch both for travel and getting around the convention hotel.

Dance GimpGirl Dance

Forever a bellydancer....a goofy one at least

Photo on the left was taken about a year ago at a Walmart checkout lane.  I'm using my wheelchair (barely visible in the photo), wearing plastic framed glasses, hair medium auburn & shoulder length, a black hoodie and jeans.  I'm balancing a 16 pound bag of dry cat food on my head while smiling.

I'm a silly person by nature and dancing has been one of the ways that I incorporate joy in my life as an adult.  Without whimsy or other mental/emotional benefit of physical activity, exercise becomes a source of unhelpful stress in my life.

You see, I have a body that has never been part of the status quo.  I was born with disabilities that impacted my vision, my growth, my exercise tolerance, my pain level.  I've been on one of the hard mode game settings of life.  It's ok...it's my body, my life, and I can't just reroll my character like I can playing a roleplaying game (tabletop, computer, console, whatever...I'm a geek and it's awesome).  Moving my body in a fun way was hard.  I wasn't the kid that was playing in the yard, and many of my childhood memories of physical activity involved watching my younger brother figure it out first (like riding a bike or skiing).  I don't have depth perception because of monocular (single eye) vision.  I'm short because of pituitary dwarfism (although I'm a tall dwarf at 4'11").  My endurance is crap because of my pituitary dysfunction.  Et al, ad nauseum.

When I found belly dance, it was amazing.  I found something that I was good at.  I have a good sense of rhythm from being a musician.  My pituitary stuff contributes to me being really flexible, so I can do some pretty cool big movements.  Belly dance strengthened muscles in my back that had been injured in a car accident seven years prior and decreased some of my baseline levels of chronic pain.  Belly dance can be flirty, bouncy, and happy, and it made me connect those emotions to my body.

CONvergence 2009, photo by Dave Stagner Photography

Breaking that vertebra took dance away from me.  I tried dancing through it.  I was in a dance troupe when the fracture was found, approximately 4 months after the actual injury.  I would go to 4 hour rehearsals, popping over the counter pain medications, laying on the floor with my knees to my chest when the rest of the troupe worked on skills or choreography.  I ended up pulling myself out of our troupe's annual show and my troupe leader never spoke to me after that.  I tried to take dance classes off and on and performed a couple times as a soloist (see photo on the right).

Photo is black and white with a veil hung behind me.  My hair is short and blonde, my eyes are closed with my right hand at my temple and left extended to the side.  My black top is a halter with sleeves, showing a choker necklace, a thin metal drape from the front of the top, and a kanji tattoo.  Photo by Dave Stagner Photography.

It probably comes as no surprise that dancing became associated with pain, anger, and frustration.  I would still try to dance at home, but hip movements would grind on the nerves.  I tried to dance using my wheelchair, but despite what I said on that blog post, it just wasn't the same (I'm human...I'm allowed to change my mind!).  Dancing was still my passion, but it was an identity filled with tension.  Memories of dancing made me light up when I would talk about different moments in my dance life.  Taking classes with Jill Parker of UltraGypsy and Caroleena Nericcio and her troupe at the Fat Chance Belly Dance studio the summer I lived in San Francisco.  Jillina of the Bellydance Superstars coming up to me after the show to chat with me because she remembered me from her workshop.  Learning West African dance at my university and jumping, stomping, twirling, hollering with the live drummers. 

This is where the point of my Cyborg Dance Projekt comes in.  While my spine surgery wasn't the rebirth I was hoping for, I still have opportunities to reconnect with both my body and dance.  After my second post-op dance class this past Tuesday at Twisted Dance, I learned some things about this new cyborg body.  I learned that sometimes the wires/nerves that relay information are faulty.  I have body signals that I have no words for.  They are so visceral that they seem to connect directly to my hypothalamus (the brain's emotion center) and my tear ducts.  It's as if the metal parts of me have made me more human than human.

There's still a lot of fear.  Fear of messing up the hardware, fear of the next vertebral joint going bad (I'm already having L4/5 issues that started immediately post-op and haven't gone away), fear of falling in a class.  With the help of my partner and my dance community, I'm focusing on the hope and the whimsy and community.  It's hard, my bodily future is unknown, I still need wheels for distance, but I'm going to cling to my art with all my might.

Dance as physical therapy?

Photo from 2008, photographer unknown

Photo on the right shows me in 2009 with shoulder length medium auburn hair, laying on the floor with my head propped on my hands with a delicate scimitar balanced on my head. I am wearing a cabaret bellydance bra and belt set in turquoise with turquoise chiffon harem pants.  Photo has about a 45 degree tilt to the left.  

So I mentioned yesterday that I was starting a new dance adventure that I called the Cyborg Dance Projekt.  I was scared because my attempts at doing some basic hip movements created some wicked pain and nerve issues (hell, a lot of non-dance physical therapy exercises would hurt me severely, like bridges and walking).  Despite my fear, I managed to go to the studio for an intermediate bellydance class that was focusing on drills (for non-dancers, that's repeating movements or combinations of movements).

I made it to the studio with a forearm crutch in tow, had a chance to talk with several folks that I hadn't seen for a while, made sure that I still had classes on an old class card, and let the instructor know how I was feeling and what limitations to expect.  Luckily for me, we were a class of two plus the instructor!

We warmed up and it gave me an opportunity to really feel my body go through it's range of motion.  The fusion site has some weird tightness and the level above the fusion is wicked flexible, so it was interesting to feel the different tensions in my torso as we loosened up.  I realized that my dance posture needs to be even more pronounced because of the competing tightness and flexibility in my lumbar spine.  What this means is I have to bend my knees even more to keep my lower back from curving into "centaur spine" (lordosis is the medical term).  I also have to focus on driving movement from my quads, my abs, and obliques to keep my glutes from driving a movement (when my glutes get involved, my sciatic nerves get pinched and it feels like I'm being stabbed in the butt with a big screwdriver).

As we got into the drilling, it was interesting to figure out what I've lost as a dancer and what my muscles will still automatically do.  Snake arms plus chest circles and slides were hard and awkward feeling, but floreos with hip movements were firmly in muscle memory.  I would imagine some of this has to do with making sure I kept movements smaller and more controlled versus using my full (pre-surgery) range of motion.

Towards the end of the class my legs were starting to spasm a bit, but I couldn't determine if it was my spine being upset or just from muscles that hadn't been used like that for so long.  Since I wasn't getting any "stop immediately" signals from my body, I gently kept going.  By the end of the class, I was so happy to have danced, even with limitations.  I didn't beat myself up about how my body used to be able to do certain things.  Even better, my instructor and fellow student seemed thrilled to be a part of my dancer rebirth.

Later last night my body gave me some grief, but it wasn't any worse than the pains that physical therapy would cause me.  I woke up today feeling like I had broken glass in my back, but that's pretty normal these days.  The happy part was waking up to dancer stiffness.  Hamstrings that are a little tight, deltoids that are sore.  Good pain to contrast with the unpleasant pain.

I'm giving myself a recovery day today, but we'll see what tomorrow may bring.  My finances are going to be a pretty solid restraint on this project as my summer pay barely pays my bills, but I am accepting donations for the project!  There's a PayPal donation button on the "About Me" section of the page or you can go directly to Twisted Dance's class package page to help me with my dance as physical therapy adventure (or come dance with me....social support is huge right now in this rough recovery patch).

Shimmy on....

Introducing the Cyborg Dance Projekt

2009, from Dave Stagner Photography

The photo on the left is one of my most recent dance performances in 2009.  This was at the Midnight at the Oasis room at CONvergence, a science fiction & fantasy convention in Minnesota.  The photo is from Dave Stagner Photography, is a black and white full-body profile shot and shows the author with short blonde hair wearing a black long-sleeved crop top with flared pants, and a fringed hip scarf with a tiger on it.  I'm doing a standing backbend with my left arm over my head and my right hand at my chest.  A tattoo on my left torso is showing that is in possible Arabic script, and another tattoo is on my left calf is a fairy.

I'm embarking on an adventure that I'm calling the Cyborg Dance Projekt (I think I've been reading too much cyberpunk and post-apocalyptic fiction lately, but that's another blog post that could be started with my GoodReads profile).  One of my physical therapy goals was to be able to bellydance again, so I'm going to try going back to dance classes.  I'm scared as my vague attempts at doing hip movements have just caused pain and nerve issues, but I have a specific reason for doing this Projekt.

I received an email from Sahira of Urban Tribal in Houston, Texas, USA that was sent to everyone that posted a YouTube video of their personal performance of her Arabian Spices choreography (click here for my solo performance from 2006).  She's putting together a ten-year anniversary performance that includes some awesome technology to "beam in" other dancers and troupes that have performed the choreography!  So I emailed Twisted Dance, the local dance studio that I used to take classes, and asked if they would be up for doing this with me.  They said yes, so it looks like we might be doing a trio on July 27th.

Because of the performance, this project has an interesting endpoint to use as a benchmark.  I'm heading to the studio shortly for my first dance class in almost two years (minus the wheelchair bellydance experiment I did as a part of the studio's promotional video....you can see me at the start of the video!).  I'm bringing at least one of my forearm crutches as my balance problems are unpredictable and I've warned the instructor that I'm coming.

I'm keeping my fingers crossed and my chin held high.

Fitness, fashion, fatness, frustration

Bad photo with tight top

So I use a neat survey site called CrowdTap that asks various questions about various companies and products, one of them being Old Navy (I generally love Old Navy as my fashion preferences are usually pretty plain but functional and semi-sporty).  I got the opportunity to sample their Active line using a coupon that gave me a pair of compression pants and a top.  I was pretty excited, but a little nervous since the coupon was for in-store use only and their plus sizes are offered only online.  I generally fit in their XL or XXL straight sizes, but their sizing is consistently inconsistent.

The photo to the right shows me, a pale short & fat woman, wearing fitted black capris with teal trim on the calf, black socks, fitted teal top, with my right hand on my hip, left hand holding on to a table for balance.

So I went to one of the local shops with my partner to see what we could find.  I was really excited by some of the colors, but really dismayed that it was hard to find anything I wanted in anything bigger than a medium.  I lucked out and found some compression pants (which seem to help with some of the leg spasms that I get when I try to work out using my legs) that were in my size with teal mesh insets (ON calls the color "Pirate Cove").  The coordinating tops though stopped at a women's XL.  Since I own some of ON's tops in XL, I poked through the rack to see if I could find the biggest XL I could find (I think my other half was confused by this until I showed him the several inches difference between the biggest XL and another XL of the same color).  I decided to risk the smaller size as the only options in store for the XXL were an eye-piercing pink and a see-through white.  I'm not comfortable with how the XL hugs my tummy rolls and the sleeves are too tight for a good TRX workout (or anything with a lot of arm movement).

The photo was taken for the CrowdTap challenge that gave me the free clothes.  The top would be awesome in the right size for working out at the gym as the fabric is a nice technical (quick-drying) fabric.  The pants would be awesome if they were a bit shorter (but I'm 4'11" so I think everything should be shorter!) and if they had a drawstring in the waist to keep them up.

I just wish I could find the XXL top locally in the teal "Pirate Cove" color!  I also wish that the plus size clothes, especially the activewear, were available in stores because of the odd sizing issues that I always have with them.