Navigating in the Starship Mobilize

Hope you enjoy a little Starwars parody :)  Simple text format of this is available at the bottom.
A not so long time ago, in a bathroom not so far far away was an exceedingly tight corner that was simply not fit for a wheelchair.  Anaka Skyroller tried as much as she could to navigate the narrow turn.  Unfortunately she was unable to keep the corner of the Starship Mobilize from colliding with the great Swinging Door of Doom.  The screech of the beloved Mobilize slowly dragging across the Door of Doom was heard throughout the whole galaxy.  Skyroller surveyed the damage to the ship first as she passed the confines of the door.  Her jubilance over there being no damage to the ship was sort lived as she glanced back and saw a deep, 8 inch long wound on the Swinging Door of Doom.  Small, sea foam green particles of industrial strength paint littered the floor of the not so spacious doorway.  This is just another casualty in Skyroller’s quest to navigate this world in the Starship Mobilize.

           This dramatic tale may seem a bit farfetched, something from another planet, however it was very much my reality last Saturday.  My wheelchair (which I’m now thinking about referring to as the Starship Mobilize) has footrests that extend straight out in front to accommodate my unbending legs.  The ends of said footrests about approximately 14 inches off the ground and have been known to cause some damage.  The list of things I have dented, scraped, punched through, and taken the paint off of is endless.  I used to feel quite guilty for ruining walls, doors, and furniture that blocked my path.  However I’ve since learned that I only need to feel partially guilty.  See there comes a point where my carful navigation can only get me so far.  Sometimes I simply won’t fit.  However when it comes to being able to get into a restroom – I need to fit and should fit, especially when it’s the restroom.   

            My extra long chair takes some finesse to maneuver, especially in retail stores.  I tend to forget that I’m in a chair since it’s simply the way I’ve always been.  However when you’re happily driving along and suddenly hit something, you stop abruptly, your head snaps back, and realize “oh no, I’ve taken out this entire store display!”  I would nearly throw myself out of my chair to pick up the merchandise as quickly as possible, hoping that nobody would notice. 

One day when I had taken out some sort of display I realized that this wasn’t entirely my fault.  Public spaces are supposed to be assessable for all people, and if this display was moved over 2 inches it would still be standing.  Instead of killing myself trying to pick everything up I found the nearest sales associate and told them what had happened.  They came over to the scene of the crime against accessibility and agreeably picked up the display.  I explained that this could have been prevented if they took into account the space needed for a wheelchair to turn, adding that stores are supposed to be accessible.  This experience helped me realize that navigating is not just the job of the driver, but the maker of the roads as well.  Highway organizations take into account where it is safe for cars to drive, and drivers use traffic laws to govern how they drive. 

            Navigating my extra long chair is a challenge everyday, especially in my 150+ year old house.  I love this old house, so I try to work around it but there is this one corner that I hit on a daily basis.  In the second part of this navigation trilogy I’ll reveal some cleaver ways I’ve thought of to patch the marks I’ve left.  

Simple Text Format from above: A not so long time ago, in a bathroom not so far far away was an exceedingly tight corner that was simply not fit for a wheelchair.  Anaka Skyroller tried as much as she could to navigate the narrow turn.  Unfortunately she was unable to keep the corner of the Starship Mobilize from colliding with the great Swinging Door of Doom.  The screech of the beloved Mobilize slowly dragging across the Door of Doom was heard throughout the whole galaxy.  Skyroller surveyed the damage to the ship first as she passed the confines of the door.  Her jubilance over there being no damage to the ship was short lived as she glanced back and saw a deep, 8 inch long wound on the Swinging Door of Doom.  Small, sea foam green particles of industrial strength paint littered the floor of the not so spacious doorway.  This is just another casualty in Skyroller’s quest to navigate this world in the Starship Mobilize.

Surrendering to Charlie

I hated Charlie six months before I met him.  Even simply thinking about Charlie, and having to rely on him daily felt like a sucker punch to my gut.  To me, Charlie marked me as a failure.  Before I go on I should let you in on a little secret: Charlie is what I affectionately call my electric power wheelchair. 

            You’ve heard me say before that I treasure my independence and that I have the tendency to want to do things that I may not be physically able to.  These traits made themselves painfully obvious during my college orientation.  My college campus is spread out on a hill of rather steep grade in Nashville, Tennessee.  The one time I visited prior I thought I’d totally be able to handle maneuvering around the campus in my manual wheelchair.  The hills didn’t seem too insurmountable, and the weather was cool (after all it was November). 

When I showed up for freshman orientation in June there was no ignoring the hills and heat.  My mother thought it’d be a good idea for me to do most of the pushing to get used to what would become my daily routine.  That evening the incoming freshman class was scheduled to go on a dinner cruise down the Cumberland River.  I remember the hour before leaving for the cruise so vividly that if I close my eyes I can recount every detail in the dorm room my mom and I were staying in, for that hour marks one of Emily’s Top 5 Emotional Breakdowns. 

As soon as the door of the room shut all the emotions and fears I had been holding in throughout the day were unleashed as if there was a crack in the Hoover Dam.  I knew there was no way I could conquer those hills everyday and go to classes too.  Then I launched into the “this college is really, really far from home” argument.  In five minutes flat I had myself convinced I would be going to the local community college 10 minutes from my house.  I’m not sure if my mom lightly slapped me or if she just yelled, but all of the sudden my entire being was transfixed on the words coming out of her mouth.  “Emily pull yourself together.  You can do this.  We’ll figure it out.  You’ll just have to get a power chair, that’s it.  Stop crying.  Suck it up.  Get ready for the dinner cruise; we’ll talk about this later.”  Part of me was annoyed that she wasn’t being very emotionally supportive, but she knew that I needed to get on that boat and not get hung up on the issues at hand.

I went on the cruise (being stuck on a boat for three hours when you’re emotionally doggie paddling is not my idea of fun).  I hung out with the band while most of my peers went up the cramped boat stairs to the rooftop deck.  I couldn’t wait to get back to that tiny dorm room, white cinderblock walls never appealed to me so much.  When my mom asked me how the night went I burst into tears again.  This time however she didn’t have to be the strong pillar she was earlier, she could just be mom. 

I had avoided getting a power chair all my life.  I hated the thought of having to depend on a machine for mobility.  My attitude was “if I can’t power it myself that means I fail”.  As my mom talked down my emotional high, she soon had me to a point where I could think power chair and not get mad at myself.  Also at the epicenter of the earthquake that was this particular breakdown was the underlying issue of homesickness.  Ironically enough that turned out to never really be an issue until the second semester of my junior year. 

The summer before I went off to college was filled with red tape as we waited for insurance denials, and resubmission denials, and finally Medicaid approval.  My power chair wouldn’t be ready until December, which left me without one for the first semester of college.  Luckily there was a couple at my church who had recently purchased one for a family member who had passed away before they got to use it.  The loaner chair wasn’t perfect, but with a few bungee cords, some duck tape, and two new batteries (that’s a whole other story), I made it work. 

When I came home for Christmas break and met Charlie for the first time it was a little bit like love at first sight.  That previous semester I got used to the power chair concept, but the loaner chair and I never bonded.  Wheelchair users bond with their chairs, it’s just a weird thing we (at least I) do (heck I refer to mine by name).  Charlie sat there in my kitchen shinny and red, he had the perfect support for my permanently straightened legs, and even had a battery gage!  I had learned that power chairs don’t hinder your independence, they enhance it.  With the tap of a joystick I could go anywhere on campus I wanted to, and not be tired from the trek there.  I love being able to take myself places; whether I use manpower or battery power, it no longer matters to me.  It was a hard lesson to learn, but oh man it was so worth the struggle.  Charlie and I have had our adventures (like tipping over, getting stuck in the snow, even sliding down a muddy hill in the rain), but I never regret surrendering to the idea of him.  

My Life as a Shopping Cart

            Those who are in wheelchairs, or really have anything physically wrong with them knows the “look”.  The look that a passerby gives you that says, “Oh you poor thing.  Something is wrong with you, you must have such a sorry existence.”  To those people I’d like to say, “Thank you Captain Obvious! Yes my legs don’t work, but the rest of me is just fine.  I live the kind of life they make happy little Hallmark movies about.”  I’m not bitter about those looks though (really I’m not), I actually feel bad for those people that believe that since I’m in a wheelchair I have absolutely no life.

            Do you want to know the place I receive the “look” most often?  Walmart.  Most kids like going grocery shopping with their mom’s to see what sort of tasty snack they can con their mom into buying for them.  However I like to tag along on those shopping trips so I can see how much we can fit in the cart.  What I mean by that is to see how many awkwardly shaped items we can fit on my lap.  Typically my mom goes to the store with a list (as if only those items will get bought – HA!) and she always asks, “Emily do we need a cart or can you handle this?”.  I usually say I can handle it because I’m lazy and would rather have her push, and I love the challenge of it.

            As we go through the store we pile on the usual things; canned goods that sit on my footrest, a couple of boxed items that get stacked on my lap, maybe some frozen veggies which fill in the gaps, etc.  When we get to the larger items (like the pack of 30 rolls of toilet paper) things get interesting.  Filling the cart becomes a full on race to the finish instead of a nice little puzzle.  As more and more items get stacked upon my lap I lose the ability to see in front of me, I can no longer do anything with my hands because they’re keeping the multipack of Kleenex from sliding and denting the two loaves of bread, and I can’t feel my arm anymore do to the four bags of frozen peas I’m holding.

            Don’t you dare think about giving me the “look” even though it looks like I might be experiencing some sort of obscure torture treatment.  I love being the cart even if it looks like I’m miserable.  See here’s the thing about us disabled folks – we have the same desire to help out.  I can’t hop in the car and drive to the store for my mom and pick up what she needs, but I can carry everything on her list (and then some) around the store and into the house.  Also I have to admit it’s pretty entertaining trying to fit everything on my lap or my chair (two gallons of milk can be nicely hung on my handle bars).  It’s funny to think carrying a bunch of stuff around the store could bring joy, but it does – at least to me.  

Hey Little Parasite Stop Eating My Awesomeness

I pride myself on being able to meet adversity head on.  When someone tells me I can’t (or shouldn’t) do something, they might as well sit back and enjoy the entertainment of watching me try to conquer the “impossible” task at hand.  To say I’m stubborn might be a bit of an understatement.  I am that person that will (and have) eaten ridiculous food combinations because someone dared me I wouldn’t – I just had to prove them wrong. 

Now there are those times when I can’t exactly envision myself succeeding at the task at hand, but I try anyways.  For example, it was a winter night in Boston, Massachusetts when my church youth group was visiting a college up there.  This particular night we were going out into the city to do touristy things and what-not.  The plan was to take the T, the Boston version of the subway.  What we didn’t plan on was the fact that the T station we were boarding at had no elevator, just two rather large flights of stairs.  At the time I was in the middle of my freshman year of high school, that put me at about 14 years old.  I had done lots of stairs in my lifetime, but it was always my father lugging me up and down.  My mother was a chaperone on this particular youth group trip but she’s not one that would be able to help with my chair in this situation.  The first station we stopped at I got out of my chair and went up the stairs with my mom’s help while one of the guys in our group lugged my chair up the massive flights of stairs. 

Unknowingly our group had picked a night that the Boston hockey team or something had won a game, thus leading to city wide partying.  The trains were packed, for people in wheelchairs it was a nightmare.  At one point my mom, myself, and one of the students got separated from the rest of the group.  Literally we looked to the other side of the train tracks after getting off the train, and there across the way stood the rest of our group.  Luckily my mom had gone to college in downtown Boston and knew her way around, but that didn’t make those cobble stone streets any smoother, the T stations any more accessible, and the weather any less rainy and frigid.  

As we wandered around those bumpy cobble stone walks freezing and slightly damp I began to get just silly.  You’ll learn that when I get nervous, scared, overwhelmed, etc. I laugh.  I laugh at anything, and I will a lot (probably to the point where people could really question my mental capabilities and not be overly stereotypical).  I started to see that yes, there are some definite unforeseen challenges, but that doesn’t have to kill the whole night.  Yes, there were certainly times that I didn’t think it was even worth it to continue on with our tour, and wanted to just head back to the college and crawl in bed.  Yes, I may have shed a tear or two going up those steps wondering “why am I even trying this?  People in wheelchairs don’t do stairs for a reason, this is dumb”.  The look on the T station manager’s face when he saw my chair go up the stairs was priceless.  I remember him yelling, “You can’t take a wheelchair up there! That’s not allowed”, to which the student carrying my chair said, “Watch me”. 

For someone who’s all about proving people wrong when they say you can’t do something, I have a pretty hard time proving myself wrong.  I’m great at tackling challenges when I have to, when I’m in the moment and I need to do something I normally would think I’m not capable of.  However when it comes to goal-like challenges I become my own buzzkill.  Take this blog for example: I love the idea of sharing my story with others, and I feel like maybe I can give those who are disabled a voice that screams “Hey, we’re just as awesome as any able bodied person out there”.  But when I think about how small of a fish this little blog is in the great sea that is the internet, it’s easy for me to feel like there’s no point to it.  Now I know that I can do anything I set my mind to, I just need to shout “Watch me” to that nasty little parasite we call self-doubt.  And it is just that, a parasite.  It feeds off you and slowly kills all your hopes and dreams. 

Sometimes I need to remind myself that I can climb those stairs, write that blog, be that voice, and achieve those dreams.  Anyways, I know that I can do all things because as long as I’m following God, I know full well that He will work it out.  I also know that I’m fairly smart, and decently creative when it comes to figuring out how I’ll do the “impossible”.  With all of that, combined with the best family and friends a girl could ask for what more do I need?  Nothing… well except a good cup of coffee to get me going in the morning.

The Deal About the Girl on Wheels

            How many blogs are out there written by females ages 18-25?  I’m guessing hundreds, if not thousands.  So why is this blog any different?  This is the true, sometimes gut wrenchingly honest account of a 21 one year old, who seems pretty normal other than the fact she’s been in a wheelchair her entire life.  See I was born with a genetic neurological condition that keeps the nerve impulses sent from my brain to reaching the muscles in my legs.  In layman’s terms that means the messages that my brain sends to my legs don’t actually there, so in turn my leg muscles don’t do anything.  I thank the Lord everyday that I was born this way, that I wasn’t made disabled after having lived a normal life.  I’d much rather not know what it’s like to run and jump than to know and have it taken away from me.  To me this handicap is just part of who I am.

            I grew up the youngest in my all too “Leave It to Beaver” type family.  My parents are God-fearing Christians who after 30 plus years of marriage are still going strong.  My brother (six years older than me) is too talented for his own good sometimes.  To this day he still pushes my wheelchair like he’s driving in the Indy 500, complete with sound effects.  My sister (happens to be four years older than me) is strong, thoughtful, and one of the hardest working women I know.  Both my siblings are married to people that fit right in our tight knit family, and my sister recently had her first child, bringing even more joy into our lives. 

            It sounds all too perfect doesn’t it?  Like any family we’ve had our hardships.  My father has been through more job transitions in the last six years than he has his entire life.  My mother has gone back to work full time for the first time in 18 years (trust me, it’s more of an adjustment than any of us were prepared for).  Sibling rivalry fueled many a fights between my brother, sister, and I.  I remember my mother telling me when I was younger that she didn’t get close to her sister until they were both out of the house – it’s true.  Once my brother and sister got married and moved out our relationships changed.  My brother became this man of God who put his wife’s needs over his own, and did whatever he needed to do to provide for her.  My sister became the person that I’d call in the middle of the night when I’m homesick while I’m away at college.  My disability was never the first thought when they thought of me, as I get older I learn not to take that for granted. 

            I was the only person in a wheelchair in my small, rural school district till my junior year of high school.  At the time, I hated my school because it was so small.  Now I realize how much of a blessing it was that I was with the same kids k – 12, for they knew me for me, not my chair.  Even though my school was not the most accessible by any means, the administration tried – kind of.  There were a lot of plans B, C, D, etc. that I had to think of when I was there.  For example: my sophomore year I took an architectural drawing class that met in the bottom floor of our high school, however there was no elevator that would take me there.  So I had to go outside and completely around the building to a side entrance, in winter, in Central New York!  I’m not sure if was the class, or the experience of wheeling in the snow to get to said class but I decided after that I did not want to be an architect.

            After high school I decided I was going to veer off the path my siblings too and go out of state for college, way out of state, approximately 800 miles away from home to be exact.  My mother thought “my baby is leaving me!”  The fact that I spend my days on four wheels didn’t even really register.  So here I am, 21 years old and entering my senior year of college.  I’ll graduate with an elementary education degree – what I’ll do with that remains a mystery, I figure I can always teach. 

I love to write though, but the idea of sitting down and writing a whole book scares the heck out of me.  However, I feel like I can tackle a blog.  A friend who has almost too many ideas about business convinced me to reach an untapped audience – those like myself.  I’ve always considered myself a bit of an anomaly because yes, I’m physically challenged but I’m pretty normal too.  I looked for blogs about young, handicapped people, who are “normal” and found none.  So, why don’t I start one?  Maybe you’re reading this because it’s 3:00 am your time and you stumbled upon this when you were looking for something to do while you can’t sleep.  Perhaps you’re like me and wonder if there’s anyone out there in the big expansive world even slightly like you.  Or maybe, you’re just being kind because you know me, and well… that’s what friends and family do – they support each other (even if they think you’re crazy).  Let me know what you think about this little blog, I’m always open for suggestions.