Saturday, October 20, 2012

It's Hip to be Square

No, I'm not going to entertain you with the 'Huey Lewis And The News' song, although I always did like their music...that title just came to me as I was driving home today.  This has been an up and down month as far as feelings go.  Good things accompanied by the not-so-good.  I've been busy preparing for our 'Starry Night' event on December 7th, to raise money for the CMTA's STAR research program, and collecting donations from friends and family...which is wonderful!  I have a great support system, and it's times like this where it really shows!  Though the event preparations also create stress, which tends to rear its ugly head in the form of back pain and know, fun stuff like that!

And right after I had written my post I Vote for the Ups about all of the great things that happened in September, I received some bad news...the very next day.  The Neurologist called and told me the results of my blood test--that no, I do NOT have type 2A.  Which means I'm back at square one, trying to find out what type I do have while figuring out how to pay for future blood tests that I can't afford...and knowing that in the next few years when the CMTA finally comes up with a medication that will stop the progression of type 1A and 2A, it won't help me.  I will continue to be as patient as possible while my search progresses, and one of my CMT-blogger friends gave me some ideas on how to proceed from here, which was a big help.  But I'll admit...I am very disappointed!  I really wanted a 'Yes' on this one...not to mention the fact that in a life where I often feel like everything is out of my control, I just wanted to have the mystery solved on this ONE THING.  So that I no longer felt like I was sitting in the dark and couldn't find a light switch.

On top of all of that I've been trying to finish all of my Christmas Presents, because I'm anal retentive about such things...and I like to be finished well before the holidays actually begin.  So armed with a 60% off coupon that was only good for today, I travelled to Jo-Ann Fabric and Craft Store to get the next item on my list.  As I finally reached my destination, I saw the crowds of people and tons of cars searching for parking spots...uh-oh, I thought to myself, wondering if this was such a good idea.  I'm not good in crowds, mostly because of my balance issues...people in general move too fast for me, and the more people there are the more chance of getting A. Knocked over, or B. Stepped on, or C. BOTH.  But I had come this far and had a pretty decent coupon, so I decided to grin and bear it.  I made my way into the store, and then my worries grew...the check out line was not building up my confidence about this whole adventure, as it stretched almost to the doors.  Did I mention why I'm not good in crowds??  Better add another reason to that list: D. Long lines.  I can't stand still for very long, even if I have something to lean on...everything tenses up, especially my back, in order to keep myself steady and balanced, and on my feet.  And when you place tension on an already taxed muscle, the end results aren't very pretty.  But that 60% off coupon forced me to keep going, in the hopes that maybe...just maybe, the line to check out might soon be shorter.

All I really needed was one type of fabric, which I found in a matter of seconds...and then I turned the corner and saw the numerous lines to get material cut, and it was like Armageddon!  Snakes of people wound in different directions from the fabric counter, numbers clutched in their sweaty hands, waiting their turn.  For me at that moment, it was pretty much over...there was no way I could ever manage to wait that long on my feet, like everyone else.  Disappointed, I put my fabric away and left the store.  Driving home I began to think about today's occurrence, and the number of similar moments that came before it.  I realized that there's never been a time in my life where I didn't feel like a square peg, trying to fit into a round hole.  When I was a child, it was as if people were attempting to pound me into this round hole, and I just wouldn't quite fit to their standards...though I didn't know why.  It wasn't for lack of trying on my part...I just didn't fit.  Now I know why, and even though it's not really important to me that I don't match up to other people's expectations, sometimes at the end of the day I'm still left feeling...bruised.  And sometimes I just want to join everyone else without repercussions, but I don't...because I know what the bruises feel like.

I don't mean for this post to sound always, there are upsides to everything.  Being 'Square' has made me creative and artistic, sensitive and understanding...I've become the individual I am today because I don't fit into normal standards.  When you view the world from a different angle, it changes your perspectives, often for the better.   If I'm being perfectly honest, sometimes I get very tired of the bruises life can cause...and even though I know there's an upside to it all, sometimes I just want to be round.  But I am grateful for the perspective I've gained from over here, and the life lessons it has taught me.  It pays to be different, sometimes in the smallest of ways.  In other words, it's 'Hip to be Square'!  



Thursday, October 4, 2012

CMT Interview on Blog: Living Well with CMT

I've truly enjoyed this past awareness month for a lot of reasons.  I've met even more people from around the country who also live with CMT, found some new blogs to enjoy...and now I have been interviewed on Melinda's blog: Living Well with CMT (Charcot Marie Tooth) Disorder.   Check it're only one little click away from a great blog, and a great interview!

Thanks for having me as your guest, Melinda :-)

Living Well with CMT