Thursday, November 24, 2011

Happy Thanksgiving!

Wow, have I been in a funk.  A big puddle of funk, covered in tar and topped off with a level of heavy-duty duct tape.  Can't get any stickier or more depressing than that!  Since writing my last post on how I understood the reasons for my seven year 'review' for Social Security Disability, the ante was was no longer just the mere annoyance of having to fill out page after page of invasive questions.  As tedious as that was, I could get through it.  It was having to physically prove, through a set of painful examinations, that yes...I have CMT. name's Christine, and I have a peripheral neurological disorder.  (Insert friendly greetings and clapping HERE.)

It wasn't just the pain the exams caused me, which was pretty intense.  I think it was the compilation of everything...the pain, the embarrassing questionnaires, and the results that were reached by completing the exams.  Even though I live this life everyday with a disability, which can often become so routine and, well...mundane in the many little ways I need to function, for the most part I remain positive.  I have learned to laugh at my circumstances and at myself, because if you can't laugh at the absurdity of life, it can be a long and miserable adventure.  Though this past week it was all kind of shoved in my face...the routine, the daily struggles, and the physical changes I have gone through in the past few years.  Some of these changes I knew about, though many were surprising...and having to face up to all of that was difficult.  I was left feeling degraded, and no one should ever have to feel that way.

But now all of that has passed, and Thanksgiving is here.  I am working hard to find my positive energy again!  This holiday is about being thankful, after all, and realizing what gifts you have in life.  And though I may have a lot of challenges to deal with, I also have a lot to be thankful for.  Wonderful friends and family whom I can trust and count on, adorable furry kitties that keep me entertained (and busy,) just to name a few.  I also have the opportunity to use my artistic talents in a new way, to raise money for the CMTA...and that money will help find a cure for CMT.  And that's just awesome!

Though all of those things are big...what about the little things?  When you are evaluating your life and thinking about what you have to be thankful for, the big things easily come to mind.  Maybe that's why it's so easy to forget to appreciate what we have all year round...all of those little things we have come to expect as a part of life, and don't even think about until they're gone.  Food in the fridge, electricity and plumbing, clean water flowing from the tap.  I am thankful to have all of those things, and if any one of them were missing, it would be a shock!  Though for many, their struggle IS living without those daily conveniences that blend into the background for a lot of us.  They may not have food to eat, or clean water, or even a roof over their head.  This is the time of year where most of us try to remember those who are less fortunate, and give thanks for the gifts we do have have, no matter how small...though why limit those thoughts to one day a year? 

Now don't get me wrong--by knowing there are others out there who have struggles, that does not make our own problems any less important...they are still real.  When I was stuck under the duct tape, a good friend helped me realize this, and I was able to get myself unstuck a little quicker!  Knowing what others may face doesn't diminish our own just helps us recognize what we do have in life so we can be thankful, and not take these gifts for granted.  As Thanksgiving day draws to a close, I am keeping all of my friends and family close to my heart.  You are all a big part of my life, and it would be a lot harder to live it without you!  I hope everyone had a wonderful Thanksgiving with their family and friends like I had...and that you all found something in your lives to be thankful for!  


Tuesday, November 15, 2011

Let's Talk About Monotony

That is a complicated word!  There are stressful times we all experience when it seems like the world is spinning out of control, and we pray for boredom...and the chance to breathe.  A little monotony goes a long way, when life is throwing you curve balls and you forget how to duck!

There are other times when life is calm, which can be wonderful.  Until you realize that each day looks like the day before, and the day before that...finding that perfect balance between lack of control and too much control can be hard to achieve.  I'm not sure if it's possible to reach that state all the time, but striving for that balance is definitely a good goal to have!  Why has this topic even come to mind?  I guess there's a variety of reasons I'm thinking about this today...I have been working hard on paintings for the CPO Starry Night gallery, which has provided me with new tasks and goals to occupy my mind and time.  Which has been great--because I've learned over the years that having Charcot Marie Tooth disease, with all of it's limits and adaptations, can sometimes cause you to get stuck in your routines.

And I'm not even sure if routine is the proper word for it...usually if you engage in a specific behavior, it's by choice.  What time you get up in the morning, where you stop for coffee on your way to work...the types of foods you buy at the grocery store.  Some of our behaviors are dictated by circumstances; for instance, you might not buy milk at the store if you are lactose intolerant.  But a lot of our routines are chosen because they work well for us, and make us happy and comfortable.  I have made many personal choices in my own life too--don't get me wrong!  I try my best to eat healthy because I figure I have enough physical problems to deal with...I don't want or need to add diseases such as Diabetes to my list.  And then there are times when nothing tastes better than marshmallows, and if I don't get my hands on some soon, I can't be responsible for my actions!  Though it's my choice to buy a bag, and many times I make the right choice and leave it on the shelf.  I have control over that particular situation. (Well, mostly.)

But having CMT can take a lot of your control in life away.  I am sure it is the same for any disability, though the specific situations and levels of degree may vary.  And although finding routines that make you happy may be a good thing, it can be difficult to accept them when you have no other choice.  I've had to think a lot about my routines lately, because I'm going through my seven year review of my Social Security Disability case.  This is a normal thing to face, though it can be a daunting task to complete a 16 page questionnaire filled with personal questions.  And I do mean personal!  Understandably, SSD wants to know if I am able to dress myself, cook my own meals, and clean my own apartment.  And this does make sense--there are many daily tasks which are very difficult for me due to hand control and muscle loss, and I've spent a lifetime adapting how I accomplish them...and there may come a time when I can no longer do so without personal assistance.  Where it gets hard is when I have to explain (in detail,) how I function in a typical day...from the moment I wake up in the morning, to the moment I go to sleep at night.  Now, just take a second and think about that one...think about how many minute little tasks you do in the bathroom alone.  Frustrated yet?  A little embarrassed??  And I have to be as detailed as I possibly can...from my difficulties in taking a shower, to my ability to use the toilet.  Need another second?  I sure do!

Beyond sharing embarrassing personal details not suitable for parties, it brings the focus on just how routine my actions have complete such simple everyday tasks that most people might not even think about.  From the way I have to hold my toothbrush so I don't drop it, to having chairs and stools around the house that I can sit on to do things such as change the litter boxes.  And it's a reminder of the usual clumsiness I deal with, because I'm tired...the amount of things I manage to drop in a day is astronomical!  All of it is a lesson; from learning when to stop and rest, to changing how I fill the coffee maker so I don't end up with a giant puddle on the kitchen floor.  But sometimes, DAMMIT...I just want to brush my teeth in the normal way!  Sometimes I just want to carry the water for the coffee with my right hand while I grab breakfast with the other.  I'm a rebel!  And I have my moments of recklessness when I attempt the impossible, because every so often I just need a break from the monotony...a change in my routine.  And in most cases...the results just aren't pretty!

C. S. Lewis once said:  Experience: that most brutal of teachers.  But you learn, my God do you learn.   I've certainly had a lot of experience in routine, and how to adapt my behaviors when I need to...sometimes it feels like the lessons are coming out of my ears.  And I keep on facing these lessons, because what choice do I have?  When I don't accept what I've been taught, I end up sitting on a stool in my kitchen, cleaning up spilt oatmeal and wet tea leaves...muttering words that are ALSO not suitable for parties!  I tried my best to convey this frustration when filling out my questionnaire...and I did manage to keep the swear words to myself.  And now that I am done, I choose to focus on my painting.  When I start at the beginning there is a vision, though sometimes my art takes a different path...and until I reach the end, the result remains a mystery.  Because a little mystery goes a long way in breaking up the monotony, don't you think?

Friday, November 4, 2011

A Great Day!

Age is strictly a case of mind over matter.  If you don't mind, it doesn't matter.
Jack Benny

And it doesn't matter to fact, I'm glad!  I turned 40 today, and I couldn't be happier!  It's funny the different reactions I've been getting the past few weeks, when people found out the big "4-0" was coming up.  I heard some "Congratulations!"...a few scattered "Wow--you don't look 40!" but mostly I heard "Oh..." accompanied by looks of pity.  Pity?  Why would anyone feel sorry for me??  I do understand that turning certain ages can be...unsettling, and for many is perceived as the end of something.  Though I don't see it that way.  There have been many times throughout my life when things have ended for me, or at least changed of yet they've never fallen on my birthday.  And I haven't exactly experienced the normal milestones that most people experience.  For instance, in a lot of cases turning 21 is a big means that FINALLY you are old enough for everything, except maybe AARP.  You can drink, in PUBLIC, and not be faulted for it.  Yippee--WHOO-HOO!!  My 21st year, however, passed in a whisper...I'm severely allergic to alcohol, so to celebrate I took my art school friends out to a local bar and bought them drinks...then I drove them home.  I admit--not very exciting in the traditional way!  I still had fun...enjoyed some laughs.  And drank a Shirley Temple!

The milestones I remember the most usually have to do with other things...the day I graduated from graduate school, my first teaching job and students, holding my younger niece in my arms on the day she was born.  I have other milestones as well...the age I was when I was finally diagnosed with CMT(25), the age I was when I was hurt and had to give up teaching altogether (32)...the age I was when Scout passed away (39.)  Not all milestones are happy ones to cross.  But they all lead you down your path in life...some spots are just a little rockier!  Well, this year on my birthday I created another memory to file away with the others, and it's a good was our Art de Cure gallery installation to raise money for CMT.  I must say--the gallery is impressive!  And as of today, the art pieces displayed throughout the space are for if you are interested in some original artwork created by regional artists, stop in at the CPO (Clinical Prosthetics & Orthotics) building: 149 South Lake Avenue in Albany NY, and take a look!  I am proud to have my art pieces hanging along side the work of many talented people...and I am excited to see just how much money we will raise for the CMTA.  We hope to see all of you at our upcoming event on December 2nd, from should be a great time!

And last but not least, let me thank each and every one who has donated an item for the event...and I know there are still more coming, so let me thank you in advance!  So far I have managed to collect 14 different donations such as quilts, hand painted items and jewelry...and one donation was actually sold today, starting the ball rolling to reach our $15,000 goal.  That was donated by my very own mother, who made several infant blankets and hats. Thanks again, mom!  And if you are a regular reader of my blog you probably have noticed that I don't use names when talking about the people in my life...I use abbreviations.  To do so now in order to thank everyone (including my mother) for their generosity, would make me sound like I forgot my alphabet!  So I will dispense with the K's and C's, and just send out a big THANKS to all of know who you are!  It's for a great cause which is very close to my heart, and your help is very much appreciated!

So overall it was a GREAT day as I turned 40...and I have some good memories to think upon in times to come.  Life is truly a gift, no matter what age you may be...and even though some birthdays can be about as pleasant as getting a box of irregular tube socks,  other birthdays are as shiny as diamonds.  I try to see the 'diamonds in the rough' each and every year, and will attempt to do so as long as I am able.  And when I can't find the shine?  Well, I'll just yank my tube socks a little higher, and keep on searching!