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WE'VE MOVED!

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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.