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.