WE'VE MOVED!

WE'VE MOVED!

There is a brand new Wheel Deal Blog! Come check out the updated, fresh, and now mobile friendly website. 

New address. New look. New content. Same Real girl, doing Real life, and sharing The Wheel Deal with you.

www.thewheeldealblog.wordpress.com

15th Anniversary

Although I have been absent from The Wheel Deal for nearly two months The WD has crossed my mind nearly every day.  I felt the mean chill of winter in more ways than just weather.  For the last several weeks (especially after half a dozen job rejection letters) I’ve reached the peak of my frustration with my unemployment.  The words “if you don’t have anything nice to say, don’t say anything at all” kept running through my mind, so I didn’t post anything.  My attitude has improved (taking account of one’s blessings does wonders to help lift one’s spirits) and I’m focusing on my job search with renewed vigor.  Despite not having any fantastic employment news to post I didn’t want to keep ignoring The WD.  I’ve been getting more involved in the AMC community via Facebook and forums, which is been great for me.  While racking my brain for a topic to write about I looked at the calendar and saw it.  This week marked a very special anniversary that helped put things in perspective for me. 

As of Wednesday January 29^th, 2014 I have been surgery-free, broken bone-free, hospital visit-free for 15 years.  

I have a hard time wrapping my mind around that fact.  Remember – I am the girl that was literately born with a broken leg.  The cute little outfit that parents pick out for their newborn to come home from the hospital in had to accommodate a half body cast.  By the time I was a year old I had already had a surgery or two and spent months in casts.  It seemed that for the first 10 years of my life I was stuck in a cycle of; breaking a bone, getting healthy to have surgery, recovering from surgery, and then rehabbing after surgery.  Luckily I don’t remember much of the icky things from those years.  However my last surgery and the months leading up to it I remember pretty lividly.

It was fall during my third grade year.  I went to a routine visit at my orthopedics’ office, which was really more of a second home at that point in my life.  While looking at x-rays of my back my doctor noticed that it had started to curve slightly.  My mother asked if we should do anything about that.  He said that we’d watch it and take a look in a few months.  When I went back in the winter it was about 35 degrees, towards the end of third grade I went back for a check-up.  We were expecting to see my spine curve a few more degrees.  It was a shock to all of us to see a 55 degree curve in my spine.  As a kid I could tell that something wasn’t quite right because I had noticed I was becoming out of breath quicker than usual.  The curve was starting to crush my left lung. My doctor explained our options and gave us his recommendation – surgery, which we took.

The operation wasn’t anything experimental.  Two titanium rods would be inserted and attached to my spine to straighten it out.  A few of the vertebra near my neck would need to be fused together.  In order to put a little foreign stuff in my body as possible they would take my bottom right rib and grind it up to use as bone to fuse my vertebra.  The surgery although tried and true had several obstacles to it.  First of all was the spinal cord.  Anytime you work in the back and neck near the spinal cord you always run the risk of paralysis.  The second was doing two operations in one surgery: getting the rib to use as mortar, and putting in the rods.  They would remove the rib first by cutting an envelope flap in my side while I was lying on my back.  Once they had my stitched up they’d roll me over and get into my back.   While they worked in my back they had to wake me up in the middle of the operation to make sure my spinal cord had not been compromised.  Slowly they would bring me out of anesthesia to have me wiggle my toes and fingers.  Once it appeared things were ok they would put me back under to finish off the procedure.  The whole operation would take approximately nine hours start to finish.

Due to the large block of time needed we scheduled the surgery several months ahead of time.  Those months were pivotal for the success of the surgery in my opinion.  During that time my semi-sadistic third grade teacher got me into the best physical shape I had ever been in.  She pushed me in a way that I’m not sure my physical therapists dared to.  When I went under the knife my body was ready to heal in whatever way it needed to.  Also during that time we were able to find two blood donors to give designated donations for me, as my doctor said it wouldn’t be uncommon for someone to need a transfusion during this operation.  Low and behold I have the rare A- type of blood, something no one in my immediate family has.  We were able to have one of my mom’s good friend’s give and a woman my dad worked with at the time.  Unfortunately the sweet receptionist at my orthopedics’ office was a bit anemic so she couldn’t give, but the fact that the receptionist at my doctor’s office was willing to do that for me meant a lot. 

My mom had typed up a full page, single spaced list of prayer requests for this operation.  Our church placed that list in the bulletin for several weeks so that everyone would know exactly what to pray for.  Not only was our extended family and our church family praying over that list, but people around the globe.  That list went viral (I think before “going viral” was even a thing – it was 1999 after all) and we got e-mails from all over the place.  Someone even placed my name in the Wailing Wall in Jerusalem.  On my final doctor’s visit before surgery day the curve was measured again – 96 degrees.  My mom was amazed that I wasn’t walking sideways but I was able to compensate well.  Although it may not have looked like it from the outside I knew my body was folding in half.  My lung capacity had been severely compromised and I could barely wheel down the hall at my school without getting out of breath.

Before we knew it was the night before surgery day.  I had been doing a lot of thinking about heavy stuff, probably too much thinking for the fourth grader I was.  It was as if the seriousness of this operation started to hit me and fear was creeping in.  I knew because I was older I would remember this surgery unlike the surgeries I had the years before.  I think I was afraid that I would only remember pain, that maybe something would go wrong, and that I would always think about being frustrated during the recovery process (which I was told would be long).  My mom just shared the story about tucking me in that night with me.  She said that while she was sitting on the end of my bed she asked “If you could stop it, would you?”.  Very seriously I responded, “No.  I have scars on my here, here, and here.  There’s not much more they can do to me”.  Sometimes you need to remind yourself of what you know out loud.

My wonderful anesthesiologist and I.

The morning of January 29^th was here.  It was still dark when we left the house.  The hospital is about half an hour away from my house.  It seemed that both my parents and I were deep in thought because few words were said, the ride there felt much longer than it really was.  I remember staring at the lights hitting the rain drops meandering down on the window of the van.  It was like the sky couldn’t hold its tears in, or maybe that’s just how I felt.  Upon arriving at the hospital we filled out the mountains of paper work and then were ushered into the pre-op room.  I changed into the paper thin hospital gown and put on my standard issue orange socks.  The anesthesiologist came in and went over all the usual things.  All of my past experiences with anesthesia have resulted in me being terribly ill (to this day the smell and taste of cherries makes me think of anesthesia).  This time I was to get the grape flavored kind.  The fruity flavor doesn’t really make a difference but the chemical make up the anesthetic was different and supposed to not make me sick.  Then Dr. A (my ortho doctor who has been with me since I was born) came in to explain the procedure once again and asked if we had any questions.  After he had left to go prepare himself for the day of operating our senior pastor walked in.  I remember Pastor Don praying with our family and then quickly being told it’s time.  My parents kissed me goodbye and told me I’d be fine.  As the nurses pushed my gurney down the hall I remember my eyes welling up with “fear tears”.  I reminded myself of all the things I know: Dr. A is the best, worst case scenario I’m paralyzed – what’s the big deal about that, and God is in control.

*Fourth grade me was right, I have remembered that experience.  The operation that took place January 29^th and the months after it are vividly etched in my mind.  There is so much more to this story, but if you’re reading this you know this post is long.  Stay tuned for part two – I promise you won’t have to wait long.*

Confession

I have a confession – I should be doing other things.  After two dead end job interviews in a 24 hours period and a day of crankiness (and binge gaming Sim City 3000 style) I should be applying for jobs.  Yet here I sit writing a post for The WD, not cover letters.  Perhaps my year’s absence from blogging is now catching up with me and now I’m playing catch up with my writing.  Or it could be that I just can’t shake thoughts about being physically disabled.  Anytime I consciously think about being in a wheelchair I always think of how I can turn those thoughts into a post for The Wheel Deal.  It’s no secret that I have been trying to keep up with it.  At first I was thinking that my motivations were stemming from the philosophy that if I blog more I will become a better writer (which is true – practice makes perfect, right?).  However I’m starting to wonder if I had a subconscious need I to pick blogging back up again.

      The last couple of months it seems that I have been increasingly faced with the fact that I am physically disabled.  What’s ironic is I’ve always been disabled; it’s not like this is a new thing – maybe that’s why I haven’t thought about it much.  It seems the more I become an adult the more my physical handicap impacts things.  It’s not that I am having a difficult time “accepting” my disability, or that I am feeling depressed by it.  In fact I am as proud as ever about all I have been able to accomplish in spite of the challenges I have faced.  Perhaps it’s that “pride” that is now catching up with me. 

It’s like I was at the top of a hill and saw something in the off distance that I wanted to get to.  I let my wheels go and I zoomed down, confident that my chair would have enough speed and momentum to get to my destination without having to lay a hand on my wheels.  Instead of gracefully rolling to my goal I hit a patch of gravel and was jarred to a stop.  Anyone who has tried to roll or push a wheelchair through gravel knows it’s no picnic.  You constantly have to back up and to get momentum to attempt to push through again.  You might try and pop a wheelie yourself only to fall back down into the evil gravel.  Sometimes you struggle so much that you begrudgingly cry out for help, even with the help of others it is far from easy.  Now I’m in this patch of gravel (which by the way seems to have come out of nowhere).  My loved ones are trying to help me through it, they really are but sometimes they get stuck too.  I know that the gravel can’t go on forever.  I believe there are smooth surfaces ahead even if I can’t see them right now.  Somehow, some way I will get to the pavement to continue my journey to reach the goal before me – even if I have to move the tiny stones out of the path of my wheels one by one.

      As I roll through the gravel at a pace so slow it is barely considered moving at all I’ve had time to look around.  I was “looking around” the other day and found an AMC (Arthrogryposis Multiplex Congenita – what I have) group on facebook.  I joined initially because I thought it was an appropriate place to share The WD, however I think that was merely an excuse for me to join.  I’m not sure why, but it seems like I have a difficult time admitting that I have AMC and that there are others like me.  Perhaps it is because I have never met anyone else with AMC.  As ironic as this is maybe I feel like I don’t know how to act.  If I really dig deep into my psyche – maybe I just don’t like admitting that I’m not “normal” and I can’t fix myself to become normal.  Being weird is something I have been very ok with, but I am not ok with my weirdness impacting what others think I can and can’t do.

      Anyways when I joined this AMC group I became fascinated by the welcome I received.  I posted a semi generic message about what parts of my body are affected by AMC and shared the link to my blog.  There were people that commented and said how AMC affected their bodies.  It was a bizarre experience to hear other people have issues very similar to me.  I’ve never been “like” anyone else when it comes to my physical impairments.  Consequently it was also a reality check for me to hear how good I have it in terms of my AMC.  I had no idea that some have AMC in all four of their limbs, where as I only have it in my legs.  I’ve been sitting here frustrated because it seems like I can’t get a job due to my wheelchair while some are struggling with AMC in all four of their limbs.  No I can’t walk well but I can feed, dress, and take care of myself.  I can get around by myself.  Although I’ve been whining for days about a muscle ache in my back that is nothing compared to the constant pain some are in.  Talk about feeling grateful.  Suddenly I’m not feeling so handicapped.

A reality check wasn’t the only welcome gift I received.  A few of the group members asked if I would chat with them about my AMC experience because they have a child with AMC.  It blew my mind that somehow my story would help me.  I know, I know – that’s the point of The Wheel Deal (to share my story) but maybe I had just forgotten that.  I was able to share my unique perspective with these people who I imagine feel helpless as they watch their loved on struggle doing everyday tasks.  My life has been so full, and there hasn’t been much that I haven’t been able to do because of my physical limitations.  Being able to some of my story with others gave my AMC purpose.  How can I let something with purpose frustrate me?  It’s like the aspects of our life (experiences, skills, imperfections, character traits, etc.) are tools in a tool belt we can’t take off.  AMC is something in my tool belt.  Some days it feels heavy and bulky - a real pain to carry around, but other days I barely notice it.  Every once and awhile I come across a person or situation that could be helped with my very special tool.

Getting connected to those who have a similar tool in their tool belt has been an interesting experience.  I have Arthrogryposis Muliplex Congenita, and there are other people in the world who have it too.  All my life I’ve been different, even from the other people in wheelchairs I have known – why not admit that there are others like me out there? I am looking forward to getting to know some people “like” me, ones that I can relate to me in a way others may not be able to.  Thank you to everyone from the AMC community that has welcomed me.  Now I should probably get back to the things I should be doing.

Bar-B-Que Tongs, Sadistic Jenga and Bin Shelves

I’m not sure I’ve returned from my trip down memory lane last week when I wrote a brief summary of all the places I have lived in my relatively short life.  Unsure if it were “appropriate” to post a 3000 word rambling about my childhood home  I limited myself to about half that in last week’s post.  However I’m not doing a very good job at winning my internal battle over the length of my trip to the past.  Consider this a white flag of surrender.

      The dwellings we grow up in have a profound impact on who we become I believe, but that’s not an entirely new idea.  My big old yellow how certainly shaped me and I helped shape it, much to my parents’ dismay at times.  My wheelchair has an extended front end to support my unbending legs.  Since my chair has about the same maneuverability as a Mac truck tight turns can be troublesome.  Try as I might sometimes I just couldn’t help but ding a wall and put a gouge in the sheetrock.  From a young age I knew how to work drywall compound with a trowel to smooth out my dents on the wall.  When I was a young teen I was driving particularly carelessly and did more than put a small dig in the wall – it was a hole.  At that time in my life I had a little Duct Tape Accessories business going called “Just Ducky”.  Duct Tape wallets, purses, lunch bags, and messenger bags were big sellers in middle school, and I made enough profit to keep me stocked in rolls of tape of the latest colors.  To “fix” the hole I put in the wall I used some white Duct Tape and meticulously vacuumed up the sheetrock dust.  In my opinion it looked pretty legit and to this day I’m not exactly sure how long I was able to conceal that hole from my parents.  All I know is I didn’t fill it in with compound until we hosted the rehearsal dinner for my brother’s wedding my senior year of high school.

      Kitchens are always a tricky area for people in chairs.  It seems like everything is out of our reach.  The fact that my front end stuck out so much really made reaching things challenging, especially when it came to the refrigerator.  When I was a young child I’m told that I would literally climb into the refrigerator to reach things.  My mom retells the story of when she caught me sitting in the refrigerator eating chocolate cake.  When she asked me what I was doing in there I simply responded “I couldn’t reach the cake” as if it were an obvious choice to sit in the refrigerator instead of asking someone for help.  Something tells me that if I didn’t ask for help it means I probably didn’t have permission to help myself to the cake.  Guess I wanted to have my cake and eat it too. 

The freezer had all the same challenges as the refrigerator with the added bonus of things being over my head.  Anyone who has used one of those Gopher Grabbers, the kind with the little suction cups on the end knows that they pretty much worthless.  My father brought one home for me and about a week later I had it in the trash can broken.  Liking my independence, and a challenge I would often look for other household objects that could help elongate my reach.  When it came to the kitchen my favorite tool was the bar-b-que tongs.  They were metal which made them sturdy, and I could manipulate them with one hand which meant I could use my free hand to catch whatever happened to fall.  I say catch but what I mean is block myself from getting hit with miscellaneous canned goods and boxed brownie mixes.  My parents knew I relished my independence and would often leave me home alone.  Not in an unhealthy, “call social services” sort of way, but in a “she’s more than capable of taking care of herself and we have lives” way.  That being said I cooked a lot of frozen foods since I had a difficult time reaching the stove (I was great with an oven and microwave though).  On rare occasions our freezer was organized and I could with some ease reach the food I wanted with the aid of the bar-b-que tongs.  However let’s be real, freezers are usually a Pandora’s Box with odd shaped bags and boxes stacked like a sadistic Jenga game.  I can remember (which is pretty shocking) several times trying to get a frozen meal out and having frozen chicken breasts rained down on my head.  Have you ever been hit in the head with frozen meat?  Frozen meat is hard – luckily you can use it as an ice pack to numb the pain away, and then cook it up for dinner once you can see straight.  When I went off to college my folks got a side by side fridge and freezer thinking that it would be better for me.  Was I able to reach things better?  Yes, marginally, but there is much less storage space in those models.  It was nice being able to get ice and water from the door with ease.  I think my parents were just happy I could reach their ice cream sandwiches so I could fetch them during commercial breaks of American Pickers.

When I was 14 years old I desperately wanted to redo my bedroom, then again what teenage girl doesn’t?  However there were some specific things I wanted done.  I had abandoned using a traditional dresser a few years earlier and started using shelves.  Dresser drawers were very difficult for me to use with my chair.  My folks picked up some cabinets from a big box store but they weren’t very sturdy.  Also my desk was always covered in stuff because I only used it as a drop zone because I didn’t have enough room to pull under it and sit.  Having a very keen interest in architecture and floor plans I drew, to scale a floor plan I believed would work.  I also designed some simple furniture that I was sure my dad could build.  I gave my dad the plans, and knew that it would most likely be several years until my vision was carried out.  However much to my surprise my family decided to do an Extreme Home sort of thing one weekend while I was away with our church youth group.  They called and if it would be ok with me if they did the work while I was away.  Knowing that I had very specific plans drawn and even had paint colors picked I said yes.  When I got home I was amazed with my new room.  I still use my “bin shelf” (wooden three shelf unit with canvas bins) as my dresser.  If I had known that the work would get done so quick I would have drawn the plans years before – haha.

Although my environment wasn’t always the most accessible it forced me from a young age to learn to adapt, a skill that I’m sure will continue to take me far in life.  Perhaps that is why I’m not as easily frustrated by certain things.  I am able to see a new and exciting challenge where others just see a brick wall.  The safe and comfortable environment of my childhood home gave me an opportunity to establish “creative” ways of making inaccessible or out of reach things work.  It instilled a “make it work” mindset long before Tim Gunn made it a catch phrase.  I also learned that if you need help you have to ask, which at times I think I’m still learning.  If your family can’t read your mind strangers certainly aren’t going to be able to.  A lot can be learned simply by doing life.  Time for me to stop rambling and do some life.

Homes

In effort to build my writing muscle, and more importantly bring some much needed consistency to The Wheel Deal I have given myself the goal to post once a week. However nothing has really “happened” that would actually be interesting to read about.  The majority of my daily activities this week have pertained to the task of deep cleaning our apartment so we pass our bi-annual apartment inspection.  So as I sit here scouring my daily activities I realize that the illusive topic is glaring me in the face: Casa de David and Emily.  Humdrum as it may sound our living accommodations are actually very apropos to The Wheel Deal, for it is the most accessible place I have ever lived.  The places I have called “home” have all been very different.   Let’s start from the beginning…

The home my parents brought me to as a newborn was a relic from Lincoln’s administration, and where I would live until I left for college.  That’s right; I’m talking a house 150 years old and still not finished.  My parents purchased it a few years before I appeared.  My dad claimed that it would be a 20 year project, it’s going on 25+ and I heard last night that work is being done in the kitchen.  To say that our old house wasn’t made for a kid in a wheelchair is an understatement, but I loved it and my parents modified it as much as they could to give me my independence.  I shared an upstairs room with my older sister till I had major surgery when I was five years old.  That year was also the Great New York State Remodel. My service coordinator was able to secure us funding for work to be done to make a downstairs bedroom and bathroom for me.  However when the proposal writer came to draft up the work that needed to be done they saw other things that just had to be “fixed for my independence”.  Essentially a small scale remodel turned into a giant kafuffle.  As some may know state agencies take the lowest bid, which usually means the shoddiest work, as was the case with the “Hardly Working” construction company.  This contractor was horrible, taking short-cuts left and right (my mother could, and has, gone on for hours about his guy’s craziness).  Luckily my dad is a real Jack of All Trades; a contractor, electrician, plumber, and anything else you can think of – he can do it all.  Despite working a full time engineering job, a part time maintenance job, and being a husband and father of three he would come home from whatever job he was doing, rip out the shoddy work and make it right.

After a long year of house renovations (all of which I believe were a divine distraction for my parents so they didn’t have time to dwell on the huge metal device screwed into my leg) the New York State funded remodel was complete.  I had a bedroom I could wheel into and an attached bathroom.  Also part of that plan was a ramp to our back door.  Eventually my dad added onto the ramp and extended it to our pool deck.  He customized a two tier design so I could park my chair on the lower level and then transfer to the upper level that allowed me to get into our above ground pool independently.  Our kitchen had two under the counter cut-outs so I could wheel under the sink and part of the counter.  On paper (in the eyes of the state) that seems very accommodating however the kitchen really needed to work for the able bodied people I lived with, so the counters were forehead level with me. Never the less I appreciated the thought.  When I became a teenager my dad rearranged some cabinets to make room for a six foot long piece of counter that was a good working height for me.  By that point in my life it was appropriate for me to be able to reach some part of the kitchen – after all I needed access to the microwave, George Foreman grill, and most importantly the coffee maker.  Also in my teenage years we had a handicap button installed for our door so it was easier for me to get in and out.

It was a pretty sweet deal for me.  I had access to the parts of the house I needed to, but it was a little weird not going upstairs or downstairs in the basement much.  I’m not exactly sure when the last time I went upstairs was actually.  When I visited the college I went to for the first time as a high school senior they didn’t have an accessible female dorm room.  However before I officially  decided to go there they had already started ripping apart a room to make it accessible. Throughout my four years I shared a newly remodeled suite (two dorm rooms with a shared bathroom) with the floor’s resident advisor.  Due to the fact that I had two wheelchairs (my manual and power) I needed some extra room, so I never had a roommate. Honestly dorm life (both socially and physically) was pretty great for me.  I loved my room, it was huge compared to my room at home and I arranged it in a way that left me with enough space to donuts in both my chairs.

Like a lot of post-grads I moved back in with my parents after college, where I stayed until I got married.  David had moved from Nashville to his hometown in Ohio several months before we got married and was trying to find us a place.  Unfortunately his search came up empty.  Finding a wheelchair accessible place in our price range was impossible.  He was able to get us on a waiting list at a building that is classified as senior living, but we qualified because I am physically disabled.  After the wedding we crashed with my in-laws.  Their house was incredibly wheelchair friendly (it’s like it was designed for me) once you got inside.  There are two decent sized steps to get in which with any impairment is sort of a pain. Thankfully for two and a half months David and my new family were able to help me and my chair up and down. Always looking for the silver lining I was able to find several benefits of living with my in-laws right after we got married.  Aside from it simply being a roof over our heads it gave me an incredible chance to bond with my new family.  You’d be hard pressed to find an opportunity to bond with your 14 year old brother-in-law, but casually playing video games Saturday morning before everyone wakes up doesn’t seem “weird” or forced at all.  Also having been used to living with parents I feel like it made the transition to Ohio easier for me. 

However sharing a twin sized bed gets old after awhile, even if you are newlyweds and don’t mind being snuggly haha.  We knew it was temporary and were very motivated to find our own place.  In the end of June we got a call saying our name was the top of the waiting list and there was a wheelchair accessible apartment available.  Our ideal situation was actually happening.  We were able to move in the second weekend in July.  Although it is sometimes strange going from a house to a one bedroom apartment we are so happy to have our own place, especially one that works so well for me.  Our lease was even changed a bit to accommodate my van.  Technically there are no reserved spots, yet I have one – there’s even a sign!  The counters in the kitchen are slightly lower than average which means I can sort of reach them, and I can pull under the sink to do dishes.  The open floor plan allows me space to set up a low work table between the kitchen and living room.  I practically live on this table: it’s my prep kitchen, office, craft room, and breakfast area.  It has been great to be able to make this our own with our stuff, furniture that works for me.  Well accept our 70’s couch that I sink into.  David actually has had to lift me out of it.

Along with my parking spot we got 25+ surrogate grandparents.  We are the youngest residents of the building by a solid 40 years.  It’s an extremely community oriented environment, with nightly activities and

even field trips sometimes.  There are few buildings where you have building wide carry-in dinners as often as we do.  It has been a hoot getting to know the characters we live with.  Lots of fodder for a collection of short stories I think.  At times it can be a little frustrating living with dozens of retirees, or living in a building that receives government funding.  However our apartments are nice, and when you considered the reasonable rent we really can’t complain. I needed to remind myself of that truth this week as I deep cleaned our apartment.  We are subject to bi-annual apartment checks where they check for cleanliness, maintenance issues, and possible liability problems.  If there’s something I’m not keen on its strangers coming into your home and picking it apart, but I understand why they need to do it.  Sometimes I forget that we are not the average resident here; we’re young and well educated.  At the end of the day I am extremely grateful to live here in my fully accessible apartment.  It’s a great feeling to be able to go in and out with relative ease and for the first time I can “keep house” independently. Although as I believe most wives think, the sight of my husband doing the dishes is pretty great.

     

Gonna Fly Now

Last week was one of those weeks when the cold, wet, gloomy outside weather mirrors your mood.  What a sharp contrast from how I felt the week before.  Perhaps I should back up and start with the Friday before… wait, let’s back up all the way to Thursday.

            It was a typical day.  I was in my spot in the hallway of our apartment building applying for jobs online.  *Side note: Personal internet is a luxury that we can’t afford right now, which is ok since we can get on our apartment office’s network – unfortunately the signal ends at our doorstep, thus forcing us to go out in the hall.  It’s barely a hall; there’s a table and chairs, a sofa, and homey little decorations.  Plus the bonus of seeing all the other residence checking their mail and chatting with them.*  I saw a posting for a full time pre-school teacher and a part time after school teacher at a nearby child care center.  I thought to myself “could I handle three and four year olds?  That’s what age Jeremiah is, and I do enjoy him.  It’s not my favorite age to teach but I can’t be choosey about jobs right now”.  So I e-mailed them my resume and cover letter because that’s what you do nowadays.  Low and behold they call me and set up an interview for the next morning.  I gleefully accepted the interview, called my parents to share the good news, and high fived my husband.

I wake up with a spring in my step (so to speak) the next morning.  Our programmable coffee maker is automatically brewing a pot of delicious smelling coffee, my interview outfit is laid out, and I’m having a surprisingly good hair day – things are going my way.  I punch the address into my GPS and it takes me to my destination using the most beautiful back roads.  I arrive 15 minutes early and notice there are absolutely no handicap stops in their parking lot.  It’s not that all the spots are taken; they simply do not have any.  I double park so I have enough room to deploy my ramp.  A woman parks in the spot next to me and gives me a puzzled look as to why I’m hogging to spots – once she sees the ramp she understands.  We walk towards the door together and she asks if I’ll be able to get up the curb.  By the time the words are out of her mouth I am half way to the other side of the building where the curb cut is.  She waits and holds the door. 

Once inside we discover that she is the interviewer and I am the interviewee.  After rearranging the office furniture to accommodate my wheelchair (and the three other chairs in the office the size of a shoe box) she squeezes between my feet and the front of the desk to get to the chair behind the desk.  The interview itself went well.  I exceeded their qualifications and proved that I was certainly competent enough.  However when I asked the specifics of the two positions it was clear that I wouldn’t be able to physically do either.  The pre-school position was actually with 18 month to 24 month olds, and the after school position required me to pick up the students from their school in a mini bus. Although both important jobs they weren’t going to work for me.  I had to explain that as tactfully as I could – that felt awkward.

It wasn’t till the following Monday when the discouragement hit.  I didn’t even recognize that it was affecting me, but I did notice that for the first time in weeks I didn’t apply to any jobs that day.  Did I know that my handicap affect my employability? Yes, but this was the first time that it really hit me.  This interview was one of the first that I had gone on where I didn’t disclose my disability in my cover letter (part of a little social experiment I’m doing).  I can’t help but wonder if I had disclosed my disability would they have called?  On other interviews I’ve been on how much has my chair impacted the outcome?  I was talking with my husband Monday night about the job thing, one thing led to another and before I knew it I was having a full on emotional breakdown.  Emotion (ok, crying) and I just don’t mix.  I don’t like it, especially when others see it, even if that other person is my loving husband. 

It was as if this really obvious fact that I have consciously trained myself to put in the back of my mind slowly seeped into my subconscious, and now it was suddenly launching an attack.  Part of what was making me emotional was the thought that if I allow my handicap to impact my thoughts concerning employment would that give it the foothold to start to impact all of my other thoughts?  I am very aware of how my thought processes works, and consciously work to lead my thoughts in good directions.  The last thing I would ever want to happen is for all my thoughts to center around the fact that I am physically disabled, that I am in a wheelchair, and because of that I can’t do everything other people can do.  That terrifies me.  To me that is the most dark, unhappy, hopeless way to live – certainly not what I want my life to be about. 

It’s amazing what a good night’s sleep, chatting with an old friend, listening to some good music, and housecleaning can do to help re-calibrate yourself.  There should be studies done (maybe there already have been) about how physical cleaning can help one to do some mental cleaning –I bet there’s a correlation there.  It’s like I have picked myself up and dusted off my shoulders, but now I have to figure out how to get back in the race.  I live in the real world, where unlike public school where accommodations are made for you because you live in that district so you have to go to that school, employers don’t “have” to hire you.  Or unlike circumstances in my past where I have been given an opportunity to do a job because the person knows that I will figure out a way to make it work because they know me, employers don’t know me.  They see a wheelchair and based upon whatever experiences they have had with people in wheelchairs they judge my ability level.  I understand that it’s human nature to judge.  To an extent employers have to use their own personal pre-judgments to discern who they should take a chance on and hire, that just makes sense.  Is it frustrating?  You betchya but it’s just one of those things in life that isn’t fair.

So after all of this rambling where does this leave me?  Nowhere really.  I think what I can take away from this experience are fresh eyes.  Recently David and I watched the entire Rocky saga (I know.  What’s weird is I think I enjoyed it more than my husband).  I feel like it’s a later round and Rocky has been beaten on by the engineered Russian fighting machine.  He’s in the corner getting a pep talk screamed in his ear by the guys in his corner, the bell rings and he’s back out standing toe to toe with an opponent that has been sent in with a mission to kill.  The job market may have gut punched me and made me stumble back to my corner, but it hasn't knocked me out.  I know where I am weak, but I also know where I am strong.  Time to play up my strengths and get back out in the ring – Gonna Fly Now.

Great Dress-pectations

If I had a dollar for every time I thought about blogging my day job wouldn’t be looking for a job, for my hourly rate would be pretty significant.  Ok so that might be a little embellished – but I have felt the pangs of guilt for being such an inconsistent blogger quite often.  Nearly every aspect of my life has changed since I last posted.  I married my best friend and love of my life David on April 20^th and subsequently moved to Ohio.  There are so many times when I thought “this experience would make a great entry in The Wheel Deal” but time has really gotten away from me.  I hope to “catch you up” in the next few weeks.  How about for today I start from the very beginning – the wedding dress.

            Little girls dream of their wedding.  It’s a fact.  If you’re a female and you’re reading this you probably did. As much as I may try and deny it I did.  I know I did because I have doodles of what my dress would look like.  (Side Note: Long before Project Runway I must have had an interest in fashion because I drew lots and lots of clothes.  Judging by my tendency to wear whatever is most comfortable I guess I grew out of my fashion design aspiration).  I have watched enough “Say Yes to the Dress” and other wedding shows to know that the dress is a big deal.  A few months after I got engaged I started to have the nagging feeling that I should start figuring out some things like; what type of dress do I want, and what kind of dress will work for me and my chair.

            One of my bridesmaids who lives out of state came for a visit so I needed to seize the opportunity to pick bridesmaid dresses while she was in town.  My maid of honor (my sister Beth) and my bridesmaid Tracy and I went to the big box store of bridal wear.  I was pretty decisive when it came to what I liked and what I didn’t, so picking a bridesmaid dress was fairly easy.  We picked the dress and I thought we were done for that trip – mission accomplished.  However the consultant that was working with us insisted (to the point where I wanted to deck her) that I try on bridal gowns.  Realizing that she wasn’t going to give up I told her some styles I liked.  She brought us to a dressing room the size of a shoebox and went to go “find the dress of my dreams”.  Yea right.

            Let me state something that anyone who has ever been clothes shopping with me knows: I HATE to try on clothes.  If I can avoid it I will.  If I can take off a sweatshirt to try a dress on over my t-shirt and jeans I will… sometimes right there by the rack.  I have no shame when it comes to my hatred of trying on clothes.  That being said I was not looking forward to trying on bridal gowns, especially since I we didn’t have adequate space.  The consultant brought a few dresses over, none of them my size and none of them looked anything like something I would wear.  Insistent that I would see their beauty once I tried them on, Beth and I started what could be described as half wrestling match half choreographed tango in the dressing room as she helped me in and out of the dresses.  At one point Beth had to scale the wall of the dressing room to get over to the other side of my chair that was lodged in there.  Now I can see the humor in it, but at that moment it wasn’t funny at all.

            I was miserable.  This was not like those happy experiences on “Say Yes to the Dress” where they have tons of room to get into their dress, where the consultant takes time to listen to their needs and wants, where the bride’s mom cries when she sees her little girl in a dress.  This was a pressure filled experience when a stranger is forcing you to get excited about trying on too small, too hideous, too puffy dresses.  I literately got lost in these dresses – there was so much fabric!  I couldn’t breathe, let along wheel.  The consultant must have finally got the hint that she was not going to make a sale and backed off.  My steadfast sister and super encouraging bridesmaid helped me laugh it off on the way home. 

            Even though I didn’t want to have another bridal gown trying experience I needed a dress.  I started to research other bridal salons in the area, difficult to find one in my budget but I did.  I started to look more on Pinterest at wedding dresses I liked and printed several pictures.   On a whim one evening my mom and I drove to the decided on store to check and see what they had.  Although the bridal section of the shop was up a few stairs I was still encouraged by their kind staff.  I milled around the bridesmaid section for awhile and found several dresses that I actually liked – simple, light, not poofy.  I asked the consultant if any of the dresses I liked came in ivory and she said several did.  It was as if I had some sort of “AHA” moment – why does a wedding dress have to be a “bridal gown”?  The first dress I tried on fit like a glove.  It was night and day from my first experience.   I went back a few weeks later to make a decision and picked a beautiful dress.  It was the perfect dress for me and my needs.  The consultant I worked with was thrilled to help me, even though it wasn’t as big of a sale as a full on bridal gown.  Actually it was a great choice for my budget too… it allowed me to get a pair of customized sneakers to wear over my braces : )

            Any time someone asked me about “the dress” I felt more empowered each time I told them the story.  I didn’t settle for something that would “work” but didn’t actually like.  I didn’t allow one experience to completely crush my dress-pectations.  I got a dress that I loved, one that fit me perfectly, and I’ll say it – made me feel like a bride. 

When I got engaged I didn’t think that being in a wheelchair would have much of an impact on the wedding itself - oh how naive I was.  It became almost a game to figure some aspects of the wedding out, I loved the challenge.  I look forward to sharing some of the unique solutions that we thought of with you. 

A Different Kind of Labor Day

In honor of it being Labor Day I thought it would be appropriate to begin this post with a story of a different kind of labor day – the day Liam was born.  I mentioned my nephew Liam in “Forever Twirling” and gave twitter-length description of him, but I want to tell you more.  You’ll want to know more too – he’s bound for greatness after all. 

He was born on my parents’ 33^rd wedding anniversary back in December 2011.  As we waited anxiously in the waiting room on the labor and delivery floor to hear of his arrival I contemplated on how I would bond with this new little guy.  My nephew Jeremiah, who’s now two (going on five – his words not mine) and I spend an inordinate amount of time together.  On average we’re together at least full two days a week while his mommy gets much needed rest to recover from working nights in an emergency room.  Although sometimes, a lot of times it’s tiring (he’s a mover and a shaker now) I really do treasure my auntie time with him.  I know it’s blessing that I get to spend so much time with this little guy.  Also the fact that I need to soak all the time I have left with him while I live locally is not lost on me.  That being said I wondered if I would feel as close to Liam as I do Jeremiah.  I know that’s sort of a “Debby Downer” thought, but it’s honest.

When my brother Andrew came out to the waiting room and told us that all 8 pounds 12 ounces of Liam had arrived I expected him to me oozing with that “new father glow”.   He went onto say that Erica made it safely through the c-section procedure (Liam was sitting, literately staging a sit-in in her womb and would not move to get in birthing position) so I thought that we were home free.  Although I had expected Andrew to be a bit giddier as he relayed the news of his new addition his bittersweet expression was explained in his next sentence.  He went onto say that Liam’s feet mirrored mine when I was born, and that he wasn’t moving his legs much.  In his basinet in the nursery you saw a full head of dark hair like daddy, a sweet face like his mama, and his aunt’s bilateral club feet.

            The next few days were spent waiting on the neonatologist to determine what the next step would be.  When they were checking him out the day after he was born they discovered that both his left and right femurs were broken (he got a leg up on me – I was born with only one broken femur).  It also became clear that his knees and hips were out of sorts so to speak.  He looked a lot like a butterflied turkey: hips dislocated out to the side and knees bent.  In hindsight looking at Liam’s sit-in all of us are so happy that his parents made the choice a week before his birth to schedule the c-section.   If he was delivered traditionally his knees and hips could pose more of a risk to both baby and mom.  Due to his unique physique from the waist down his femurs weren’t cast normally.  Instead he had a crazy looking harness on that went over his shoulders, around his back, and kept his legs pretty stabilized.  That harness although effectively helped his bones heal in a few weeks made life pretty miserable for Liam and his parents.

            Getting this little guy home was an adventure that nobody knew how would end.  My parents having been through almost the exact same scenario with me as a newborn, thought that he could just ride home in a regular car seat.  However the harness didn’t allow Liam to bend at the waist, thus he couldn’t sit.  The hospital mandated that he be transported in an approved car seat or “car bed”.  The next question we all asked “What the heck is a car bed?  And where can we get one?”  Apparently it’s like a mini hospital bed that actually straps into your car.  Finding a place to purchase one, getting insurance to cover the excessive cost, and obtaining one on a Sunday afternoon is pretty much impossible.  The next option was to leave Liam at the hospital until they could figure another way to get him home.  For new parents – physically, emotionally, spiritually exhausted parents that was not an option.  How could they handle leaving their new baby behind? 

            Andrew put a desperate plea for prayer out on facebook.  Since Liam’s birth (and the many weeks following) I have never seen my brother so physically and emotionally fragile.  Those requests for prayer are what kept Andrew and Erica going – we know that, but that’s a different topic.  Anyways people were made aware of the situation and many offered suggestions.  One of Andrew’s friends that he graduated high school with is an EMT and volunteers at our local fire department saw the plea and had an idea.  He used his connections to secure an infant sized emergency medical transport backboard.  The hospital gave the “ok” and by that evening all of them were home in their own house.

            Although I don’t personally know, I’ve had a backstage pass of watching both my siblings become parents for the first time.  It’s overwhelming.  Whether your child is born and everything works the way it should, or there’s physical challenges it’s completely life altering.   There isn’t any sleep, and when you have time for sleep you can’t because you’re worried if you and your child will survive this learning curve.  The next few weeks were rough, there’s no sugar coating that, but they made it through.  It was a tremendous time of growth for us all.  There were several times that I struggled in a way that no one else really understood.  Someday I’ll write about it and perhaps there will be someone else who was born with a physical disability, and had a family member born with a similar one that will get it.

In early February Liam was finally rid of the harness, femurs all healed.  When Liam was born my orthopedic doctor was out of the country, but his practice is hooked into the hospital that Liam was born at, so he became a patient there. Let me just say, I have the best ortho doc in the world.  It’s not bias, it’s fact.  Since becoming my doctor when I was just a day old he’s gone onto becoming the head of orthopedics at one of the state’s leading teaching hospitals.  Once he was back in the country he snatched up Liam’s file.  We don’t have a whole lot of information to go on when it comes to about what condition Liam and I both have, it’s really bits and pieces of various things.  The fact that Liam has the same doctor that has been working with me since day one is a huge deal, HUGE.

There’s a lot more to Liam’s story as I’m sure you can imagine, however this post is already getting to be pretty long.  Let me wrap this up by expelling the notion that I once had about having trouble bonding with Mr. Liam.  He and I are literately two of a kind.  No one ever wishes a physical handicap on someone, and I’m certainly not rejoicing in the fact that he currently is following in my footsteps (horrible pun not intended.  Ok maybe a little bit…) I am simply trying to look at this with my sometimes annoyingly present optimism.  Everything that is vital to life works, and he’s a lot better off than some babies.  I look at his situation with the same mindset that I see my own with – it is what it is, and it’s not going to stop us from living our lives.  Liam’s future is unknown.  We still hold the hope that we’ll see him walking, but if that’s not in the cards so be it.  He’s eight months old and has already made an impact on so many.  I mean the kid has a Facebook group dedicated to him with over 100 members :-p

Liam stating the fact that he is fearfully and wonderfully made- photo by God Given Photography

Dominoes and Hills

The award for Most Inconsistent Blogger goes to… Emily!  If there were a statuette to recognize the laziness I have shown towards The Wheel Deal I imagine it would be a golden fist with a thumb pointing downward.  Unfortunately it has been weeks since I’ve even thought about The WD, my mind preoccupied with not one, not two, but three life changes that are about to occur (I’ll get to that after I grovel for your forgiveness).  However this past week I haven’t been able to shake this internal demand for me to pay some attention to The WD.  So – here I am, I might as well tell you all where my wheels have been and where they’ll be going.

Every big change is really just a domino in a giant maze of other dominos – I like to think of that maze as life.  For many years it seemed that the dominos were placed almost a whole length apart, and much time had to pass in order for the next one to be knocked over.  However lately the dominos seem to be placed quite close together and things are changing quickly in my a-mazing life. 

Domino #1: In June while visiting my best friend turned boyfriend (as of a year ago) who lives in Nashville we met up with a photographer friend of ours who was going to take couples photos of us.  Not being the most photogenic person I wasn’t real enthused about a photo shoot, but he kept reminding me that someday I’d be glad to have the pictures.  Since he tends to be right about that sort of thing, and our friend takes beautiful pictures I put my happy face on.

*Side Note: never thought a whole lot about couples posing for pictures when one is always sitting.  The height difference is sometimes just awkward when it comes to taking pictures.  

Anyone else feel that way? 

The above mentioned issue was starting to get to me a little, add the afternoon sun on an already hot summer’s day in Nashville you have the recipe for a slightly cranky Emily.  I wanted the pictures to look good, and although I really was happy to be there I just couldn’t get the weird height thing out of the back of my mind.  I started to stare off into space a bit, perhaps I was trying to think of different poses, or maybe I just shut down a little.  Something caught my eye and I looked down suddenly to find my boyfriend on one knee holding a sparkly ring.  My “yes” was immediate (we had discussed marriage at length many times, and it was no secret both of us that it was in our near future – I just didn’t know when it was going to be “official”).  To no one’s surprise the next several shots were the best of the night.  We, I stopped thinking about looking “happy” and simply was.  I should make a mental note to remember that on my wedding day – I’m sure I’ll need to remind myself to not over think pictures then too.

Domino #2: Figuring out how to take the long distance out of our long distance relationship has been a goal of ours for the last year, now we have a much needed timeline for that.  We know by the end of next spring that we will not only be living in the same city, but we will be together as husband and wife forever.  While in Nashville post-engagement, my now fiancé and I looked at an apartment.  This was a first for both of us – me: looking at a grown-up place to live, my fiancé: looking at apartments and factoring in a wife and a wheelchair.  We knew that I would be the one to make the geographical move so we could ditch the miles between us.  Now having a definite timeline we’re not only planning a wedding, but a big move as well.  That being said – wedding planning for a wheelchair bride and a groom currently 800 miles away… stay tuned to hear how that goes.

Domino #3: This should be called “The domino I desperately need to tip over – like now”.  I am faced with the same problem most post-grad young adult is – finding a job in a rickety economy.  Unlike a lot of 23 year olds I have no “official” work experience.  Typical teenager jobs in retail or food service weren’t really an option for me, and I wanted to make sure I could get to a job independently (basically I needed a car – no easy feat for a driver in a chair).  However I have a van now (yippee!  I’ll post pictures of my cool semi-high tech van that I affectionately call Albert), a degree, and the skills needed to do all sorts of jobs. 

Never did I think that finding a job would be so difficult, or that my chair would actually play a role (no pun intended) in my job search, yet it is and it does.  As a student I didn’t let my chair impact a lot of my choices.  School work is done for the most part sitting down, and when I worked in various elementary schools the environment was pretty easy to navigate.  However as I contemplate places of employment I find myself having to think how my seated posture will work with that.  For example the other day I looked at jobs at the post office.  The description for the clerk at the window seemed to be a great fit for me, except for the fact that I can’t even see over the counter.  It will certainly be interesting to see where I end up employed.  Hopefully that happens soon!

So here I am, on the brink of extreme change.  It’s like being at the top of a hill on a paved road in the middle of nowhere – you’re not rolling yet but once you start you’ll get that feeling in the pit of your stomach.  It can only be described as partly terrified, a little shaky, adrenaline fueled thrill, but mostly sheer joy.   Last year I couldn’t imagine this is where I’m at, and I’m sure next year I will think the same thing.  I have to ask my older, wiser readers: does the road of life ever flatten out, or are you constantly going up and down hills? 

Forever Twirling

I know this isn’t a typical “I haven’t blogged in almost a year” entry.  There's a lot to fill you all in on: engagements, nephews, moves - but that will have to wait.  However sometimes entries write themselves and welcome back posts must be postponed. 

            My alarm went off Sunday morning and I was greeted with sun streaming through my window blinds and birds chirping outside.  It sounds extremely cliché but honestly that’s how my day actually started – full of symbols of life.  As usual I prolonged my laying in bed (although this morning I actually felt “awake”) and mentally went through my closet deciding what I would wear to church.  I made my way to the kitchen to put my mandatory pot of coffee on.  Taking time to finish up the half cup left in the pot I sat in the middle of the kitchen and stared at the floor watching the sun shadows dance.  Something struck me this morning – everything seemed beautiful, like I was in a dream or had HD glasses on.  I put on my mentally pre-planned outfit of a skirt and t-shirt, nothing particularly different than my daily wear really.

            Out the door on time I went to my van to get in and head to church.  Knowing what sort of mindset I was in I wasn’t surprised that I took my time getting in, leaving the side door of my van open and the breeze blow in until the very last second.  As I stood up to get into the driver’s seat the wind blew my skirt a bit.  Just like before when I captivated earlier by the shadows dancing I couldn’t stop watching the wind play with the hem of my skirt.  My mind instantly envisioned myself twirling, leaping, dancing, and spinning in a bright white, sun-filled room.  I knew what I was seeing – it was a sneak peek of myself in heaven getting my dance on. 

            During my drive to church I was in a happy dreamy state.  I was almost thankful that the car I was stuck behind was driving a good 10 mph under the speed limit; I was enjoying seeing the scenery with my “high-def dream glasses”.  Once at church I sidled in next to my sister-in-law and 8 month old nephew Liam.  I am going to have to tell you more about Liam someday but for now you just need to know some basic facts: that sweet little boy lights up the room with his smile and shares his Aunt Emily’s orthopedic challenges.  Still thinking about twirling in heaven I looked at Liam and had similar visions – him running, jumping, tumbling and doing flips.  As I played with Liam throughout the church service I prayed that no matter what his future held (we don’t know exactly how similar his genetic disability is to mine) he would never forget what I was being reminded of that morning – that in heaven we’ll have perfect legs and feet.

            I couldn’t help but feel an overwhelming sense of gratefulness that I can look forward to an eternity with perfectly functioning legs.  I’m not going to lie, I have no idea what the sermon was actually about (I was really lost in my own thought process).  However at the end of the message the worship team played that classic Mercy Me song “I can Only Imagine”.  I’ve heard that song a million times on the radio and usually just ignore it, but when I hear it live it gets me (especially when my brother plays it – since becoming Liam’s daddy I think of him and that song totally differently).  All hope of keeping my emotions in check when out the window when the lyrics of the song connected with my visions that morning.   “Surrounded by Your glory, what will my heart feel?  Will I dance for you Jesus or in awe of you be still?”  Totally and completely overwhelmed by what I have to look forward to I cried tears of gratitude.

Rarely do I really think about how my movements are hindered by my lack of muscle control in my legs, but mornings like Sunday I just can’t get away from it.  There have been times when those thoughts have made me feel the exact opposite; sad, depressed, and inadequate.  Part of the reason I am writing the experience of this past Sunday down is because I want to remember it.  I need to remember that I have all of eternity to twirl, do cartwheels, jump, and dance.  Eternity is a whole lot longer than my lifetime here on earth.  Any thought of heaven automatically reminds me of the tremendous love God has for me, and the fact that He made me to His perfect specifications.  The way I am, the way Liam is, the way you are is exactly how we were thoughtfully put together.

            The other reason I wanted to write this down was to share it with you.  I try not to get over preachy or religious in this blog because I want to be as relatable as possible.  However my relationship with Christ is a huge part of who I am, it’s my very foundation, and it has had an immeasurable impact on how I view my disability.  It would be so easy to take the fact that the only movement my skirt makes it from the wind and simply be sad about it.  To wallow in the fact that I won’t ever know the simple girlish pleasure of twirling.  But what good would that do?  I want to share the hope and promise of an eternity as a perfect being – completely whole physically, emotionally, and spiritually.  Here’s to spending forever twirling : )

"I'm thankful for..."

            Everyone is seated around the table; the air is filled with a mix of traditional Thanksgiving dishes and the aroma of various family members’ perfume and cologne.  The room seems impossibly warm yet no one complains, for it’s difficult to decipher between the actual physical heat and the warm fuzzies that being with family provides.  My grandfather offers up a heartfelt prayer of gratitude for all that the Lord has blessed us with, the prayer is closed with the joining of everyone’s voices singing of the “Doxology”.  The passing of plates starts, a guessing game of “is this my fork, my neighbor’s fork, or the turkey plate’s fork?” begins – it seems that the quiet moments of the beginning of the meal are long gone.  Eventually someone starts my favorite part of the day, the actual giving of thanks and the chaos leaves as quickly as it appeared.  “I’m thankful for…”

            Each year I try to come up with a new answer, something that is distinctly of the year (for example this year I could say something about graduating).  However what I am most thankful for does not come and go each year.  It sounds utterly cliché to say that it’s my family and friends that truly fill me with the Thanksgiving spirit, but it’s true.  The list of reasons why is never ending and always expanding, yet I think that the aspects of these relationships that I appreciate most are often the ones that I don’t notice every day.  Near the top of that list of reasons why is the mere fact that they cause me to forget about the most obvious part of my life.  Even though the way I do things is almost entirely different than the vast majority of people I know rarely do I realize what causes me to have to make those adaptations.  Instances like the other day illustrate this point: my mom asked me a question about jump ropes and I told her that I had no clue about the answer.  “How could you not know?!?” she asked, I simply pointed to myself, an “Oh” was uttered as she answered her own question.  Experiences like my father bumping my chair up and down hundreds of steps at Watkins Glenn State Park without thinking twice about it make me realize how sacrifices are sometimes made so I can feel “normal”. 

            There are times when it’s completely different circumstances that cause me to feel saturated with gratitude.  Like the time almost exactly three years ago when I flew back to college with a fellow classmate and dear friend when all the parts besides for the frame of my wheelchair were left in Syracuse, while I was in Nashville.  Although that morning was excruciatingly long due to having to wait around for the airline to determine where exactly the pieces to my chair were, I was never alone.  The entire existence the Wheel Deal is due to the prodding of my best friend, and the resurrection of it is the product of some of his very late night pep talks.  I feel quite ordinary most of the time and forget that I’m different.  Even times when I am cognizant of my uniqueness the thought that others might actually want to read about those differences doesn’t usually cross my mind.  Sometimes you just need to be reminded not only of the fact that you are special, but also that you can share what makes you that way.  I am undoubtedly grateful that I have friends and family that do that.

            As I continue to grow into adulthood it becomes more apparent that thanksgiving isn’t something that happens on the last Thursday of November each year, it should be an everyday practice.  With age comes the realization that reality doesn’t always play nice.  It’s easy to feel like you’re being beat up by the punches that life sometimes throws at you.  However we’re not called to be victims of circumstance or “bad luck”.  With a mixture of hard work and having the right attitude your outlook changes and you’re able to bob and weave when those punches come your way.  The feeling of life taking too much from you can be combated by giving thanks for even the little things.  When I can’t get somewhere because of my chair it would be easy to get discouraged by those circumstances, but what good would that do?  Instead I think about all the things that I can do, and how there are more opportunities than ever for people who are disabled.  When I can feel the awkward stares, or when people talk to others I’m with but not to me because of my chair it’s sometimes difficult not get a little agitated by their ignorance.  I’m forever thankful that I can surround myself with people that I can joke with about being disabled cuts that mindset of being annoyed with society off.  It seems almost sad that there is only one day a year where the practice of giving thanks is given top billing.  You  don’t need to have a feast every day, and it would be impossible for New York City to shut down the streets used for the Macy’s parade on a more than yearly basis – yet that doesn’t mean that Thanksgiving only has to happen once a year.  Also a byproduct of thanksgiving is that feeling of warmth I described earlier.  I’m positive stems from counting of one’s blessings.  I know that because my hands are freezing right now and I’m sure the ground outside is dusted with frost, yet I feel immeasurably warm inside.  

emBracing Curiosity

“Emmy!  Emmy!  Emmy! Emmy!”  That is rapidly becoming one of my very favorite things to hear, which is saying something because I typically detest being called “Emmy”.  However when it’s coming out of the mouth of a 28 pound, 31 inch tall blonde haired boy it’s an entirely different story.  My nephew Jeremiah has me so tightly wrapped around his finger (and I’m sure he knows it, he’s brilliant after all) that he could call me practically anything and I’d love it.  After the yelling of names and running towards each other we end up hand to foot, his hands braced against the bottoms of my feet.  As he pulls my feet apart (I say “he” because he tries, but really I do the heavy lifting) to clear room on my chair to sit with me I pull him up sit on my lap.  After I force him to give me a hug he settles in on my lap between my braces and we’re off.  Jer has been sitting with me in my chair since the day he was born, and I always thought that as he grew up into a little person he wouldn’t want to, or he wouldn’t sit still as I turn the wheels.  However it’s just the opposite, it isn’t until I stop moving that he gets antsy, most likely thinking that if he wiggles around enough the chair will magically start to move again.

As one would anticipate the more Jer develops the more he discovers about the world he lives in, thus making him more curious about his aunt who’s different than everybody.  I tend to be fairly oblivious to how people perceive my chair, but I’m trying to be more conscious about that – partly because it’s just plain interesting to know what others think of you and why they think it.  The first time I remember my disability causing Jer to think is when he was sitting on my lap while I had my braces on.  I wear full length (foot to upper thigh) braces with lockable knee joints.  My braces are like weirdly shaped metal legs – not super comfy to lean against.  One day Jer climbed up on my lap, settled in his usual place and suddenly got this very disgusted look on his face.  He hit my brace, squawked something in baby gibberish that I’m sure meant, “Dude Auntie Em what’s with the hard legs?!?”, and then he grabbed the end of my pant leg and tried to inspect what was making my lap feel different.  The tailoring of my pants didn’t allow him to inspect my braces much though, which frustrated him for about half of a millisecond and then life moved on.

A few days later we were at my house and I went into my room to grab something.  As I’ve come to expect Jer followed after me to inspect everything he could get his hands on.  There on my floor laid my braces and I saw a teachable moment.  I encouraged him to manipulate them, pull the Velcro straps, slide the knee locks, knock on the hard fiberglass backs.  After he was done inspecting them I put one on over my non-braced, pajama clad leg so he could see.  He stared with wide eyes as he watched my normal legs put a different costume on.  Once braced I pulled him up on my lap like we normally would so he could see what he feels when he sits on my lap. 

Knowing that the chances of him remembering all the discoveries he made that afternoon were slim I still felt it important to encourage him to make those connections.  I’ve never had the opportunity to be the sole person that someone bases their opinion about people in wheelchairs on.  Spending so much time with Jer has really spurred me to be cognizant of how the perceptions of people are crafted.  My hope is that he grows up with a healthy curiosity about not only what makes people different, but about his entire world.  I want him to not only wonder and question, but be mindful enough to try and understand that which he doesn’t know.  What a different place the world would be if as much as people questioned, they allowed themselves to learn and be taught with an attitude of understanding and not simply knowing.  

A Whole New Wheel Deal

            Yes, this really is a new post.  I know that it’s been over a year since my last entry, and if I could go back in the space time continuum and not get so far behind on posting - I would.  All the typical excuses for my lack of writing like these: “I’ve been so busy”, “I have so much to say that I’m overwhelmed and don’t know where to begin”, and “Nobody reads this thing anyways, why post”, could be used.  Although all of those lines are true (except for the last one of course), they’re pretty pitiful excuses.  Many have told me I should write more, and I’d be lying if I said that I haven’t felt guilty for ignoring The WD.  So in the spirit for the looming holiday season why not get a jump start on New Year’s resolutions and start writing on a regular basis again?

            Like most 22 year old recent college graduates I feel like my entire world is changing and I’m not quite sure how to keep up with the change.  Before my long absence from you all I was connecting the final dots on my student teaching plan.  The university I graduated from is in Nashville, and the school district where I student taught is in Central New York.  My university was willing to allow me to student teach out of state, however I was responsible for all the arrangements - something that I was not aware would be so tedious.  Yet it all worked out.  I ended up student teaching in two classrooms; first with my former fifth grade teacher in her class, and then in a second grade classroom with “the fun teacher” (at least that’s how I remembered her from when I was in second grade).  It was a truly shaping experience, and although I’m not exactly drawn to the idea of teaching in the traditional classroom sense, I wouldn’t have traded my time there for anything.  I can’t wait to relive some of those memories and reflect on the lessons learned through these entries.

            With student teaching came a move – back home full time to the house I grew up in.  What has been one of the most interesting things about living in the college dorms is that within my one room I can almost completely tailor it to meet the needs of me and my chair and not worry how those changes impacted others.  Also at school many daily tasks were just different, like doing laundry in the big laundry room.  Since there are several washers in one room the machines are smaller than the typical family sized washer.  With the smaller machines I was able to reach all the controls and down to the bottom of the washer – thus I could actually do my own laundry.  I didn’t fully appreciate the ability to not have to depend on others till I came home.  (Not to say my parents weren’t more than happy to do my laundry, I just hated waiting for laundry day to wash my most often worn hoodies)  My parents have always done pretty well trying to make our 1850’s house work as best for me as they can.  Recently our washing machine of 24 years finally went kaput; it was replaced with a front loading machine – enabling me to finally do laundry independently at home for the first time.

            This spring I crossed another hurdle in my quest for independence – I purchased a brand new 2011 Dodge Caravan that is currently in Phoenix, Arizona being modified.  Driving has been a work in progress since the day I went to the DMV to take my learners permit test as a 16 year old.  As anyone who needs special modifications for driving will tell you, they aren’t cheap.  New York state has a program that assists those who need modifications, however in order gain any funding you must follow their process (even if it doesn’t always make sense), and jump through what seems like hundreds of hoops.  Now over half a dozen years later I finally see the light at the end of the tunnel.  It’s funny, I made an appoint that’s a month away and for the first time I thought “hey if my mom can’t take me I could drive myself”.  It was an exciting realization.

            In May my family and I trekked to Nashville for the final time (at least for school related reasons) to participate in graduation activities.  It was a blur of a trip, not only was I graduating but I needed to do several presentations about my student teaching experience.  I tried to connect with some dear Nashville friends while I was there but I must say, my brain was pretty scattered at that point and although I was there, I wasn’t really “there”.  I think everyone has moments in their life when the craziness seems to overwhelm you, much like a computer just freezes when there are too many applications running.  When I first went to school in Nashville in 2007 I never anticipated that city so far from everything I knew ever feeling like home.  However when we pulled out of the school gate for the final time my heart (and my tear ducts) told me that this city had indeed become a home to me.  Never would I have thought that I could survive living on my own, hundreds of miles from home – yet it did.  Making it through four years of intensive learning is a great feat on its own, yet I feel like simply living and surviving was a greater accomplishment. 

            Although I’m currently jobless (I can’t get a job until I have a way to get there.  COME ON VAN GET HERE!) I still have a sense of busyness to my life.  I’ve been working a lot in our church offices with my mom who’s needed some extra help there.  Also I’ve been watching my now 18 month old nephew a few days a week while my sister works in the emergency room at a local hospital.  Watching my nephew gives me that feeling of “I never thought I could do this, but I can, and I can do it well”.  Anyone that has young kids or spent lots of time with wee ones can testify that they can be challenging to fully abled bodied people, so to know that I can successfully care for this tiny person is a pretty big accomplishment.  As the youngest in my family I never got the backstage pass to the childhood development from infancy show, so this experience is not only one that fills my heart with an immeasurable amount of love, but it also fascinates me.  It is truly an interesting experience watching someone discover your disability - I think he’s even helping me discover new things.

            Well I just glanced down at the word counter and I’m over 1000, which means I should wrap this “Welcome Back” entry up (and perhaps begin a new one).  Again, please accept my deepest apologies for my unscheduled absence.  It certainly wasn’t that I didn’t think about writing, I simply didn’t even know where to begin.  However now I’ve taken the first step – I hear that’s that most difficult part.  

The Eulogy of the Little Pink Wheelchair

You may have noticed that I’ve been M.I.A. for the past several months, that’s because I am but an overworked and overwhelmed college student.  As much as I love writing about my adventures and sharing them with you, I’m paying a decent amount of money to go to school, so that comes before blogging.  However I do feel a little guilty for leaving you all with nothing new to read for months on end so I dug up a little nugget of Wheel Deal entertainment.  A few years back I was given the assignment to write a special occasion speech, I chose to eulogize my first wheelchair.  I’m sure anyone that can remember their first taste of freedom whether it be a wheelchair, a car, or even recovering after a surgery can relate to the sentiments expressed below.  Hope you enjoy!

                        ­- Emily

"The Eulogy of the Little Pink Wheelchair"

I was three years old when you were brought into this world.  I got to chose everything about you; what color you were, the seat you would have, even what stickers would be stuck on you.  For the first time I had choices to make, important ones.   Pink or purple?  Teddy bear stickers or kites? 

Months after we ordered you, you were brought to my house and we became fast friends.  You were hot pink, two shades lighter than 1992 Barbie pink.  In my dinning I made you my own placing three teddy bear stickers on your back, and six kite stickers on your wheels.  I’m sorry they came off in the snow as soon as we went outside for that first time. 

You gave me freedom.  I didn’t have to ask my sister to pick me up and put in a chair at the table, for I was already comfortably seated in you and could move myself to the table.  There would no more crawling from room to room, no more rug burned knees, no more stepped on fingers, for in you I could go anywhere.

Remember we were in the Harold Warp Pioneer Village in Nebraska and we tipped over for the first time?  My mom thought my dad had the handle, and he thought the opposite.  Andrew and Beth were arguing by the carousel and you and I were atop the ramp of the school house.  In an instant you and I were barreling down the ramp.  Unable to stop myself as a 4 year old we hit the bottom and tipped.  You kept me safe within the tight protective arms of your seat belt.  Within seconds we were on our four wheels again but both of us would need a little time to recover from such an experience. 

When I was five and had surgery that permanently straightened my legs I feared that I’d no longer be able to use you, for now I would need a chair to support my legs.  But no, you changed.  New foot rests were installed and slowly you and I got used to being seven inches longer.  Yes, turns took a little more work, and your paint did get scratched but it just added character to you.  You gave me a permanent lap – a table I would always carry with me.

 You were there my first day of school.  Together we went up the lift on bus 69 that first day, and together you and I continued that routine till seventh grade.

We went to the Grand Canyon, the Painted Desert, Disney World multiple times, to Canada, Colorado, Yellow Stone, and through the flat plans of Nebraska.  You were thrown into trunks, bumped up and down steps, casually tossed in the belly of airplanes.  Taken apart and put back together countless times.  You were a real trouper.  Never once did collapse on me.  Never did roll away as I went to sit in you.  You were always there for me, day, night, sunshine or snow. 

Those last few years we had together were hard.  It broke my heart to see age.  To realize that the seat I sat in as a three year old would not accommodate me as a 13 year old was something I denied for years.  I still remember the first time your handle came out when we were being pushed down the ramp by a friend at church.  First I was so mad that you cause me to crash into the railing, but when I realized it wasn’t your fault, I was so sad for you.  I know you didn’t mean it and you couldn’t help that the screw finally broke.  You were old and it was becoming increasingly unsafe for us to be together.  I didn’t want to let you go.  Even when I ordered a new chair, I kept you in my garage just so I could still have you in my life.  As I turned 17 I knew it was time for us to say our final good byes.  You could be refurbished and become a friend to another little girl who would love a hot pink wheelchair as much as I did.  I knew that you wouldn’t want to just decay in my garage; you would want to continue helping little girls whose legs don’t work.  As my dad loaded you in the van, and I saw those teddy bear stickers for the last time a tear fell from my eye.  It was the end of an era for us.  You were my first taste of freedom.  You allowed me to go anywhere and do anything I’d ever want to do.  All those years we had, all those memories we share – I’ll cherish those forever.