Saturday, October 30, 2010

Look around you!

Whew!! took a few days, but my anger's abated.  That breathing really helps, though I think I blacked out a little!  I probably let myself get more annoyed at a situation that didn't deserve it, and gave it too much of my energy.  Sometimes in the face of frustration it's easy to give your energy away, and by the time your frustration passes you may find yourself pretty tired!

So let me explain this particular situation to you.  I mentioned the pool in my last posting...I have been going to the local YMCA twice a week for about two years now, where my physical therapists hold pool therapy classes.  I work out in the water with Styrofoam buoys, doing leg and arm exercises.  When I started in pool therapy I couldn't do much more than hold onto the side of the pool and walk back and forth through the water.  I sat down and took breaks often, and when the rest of the class went to the deep end to continue their workout I stayed by myself in the shallow water, walking laps back and forth along the wall.  These days I am much improved!  I graduated to the largest sized buoys (the bigger they are, the more resistance as you push them through the water,) and I join my class in the deep end every time.  The pool has increased my balance, strengthened my muscles and given me more endurance.  I wouldn't trade my time there for anything in the world!

Then why did I get frustrated?  Well, it had nothing to do with the class...or the exercises...or the PT...or that I need a new bathing suit.  It was a simple matter of respect--and common sense.  And looking past your own little universe to notice that there are OTHER PEOPLE IN THE WORLD!!  (Oh...I'm getting frustrated again...HEE...HOO...HEE...HOO...HEE...HOO!!!)  Ahh...that's better!  Now, if you've been reading my blog from the beginning, you probably have put two and two together and realize that I don't wear my braces IN the water.  And even though I'm like Flash Gordon's slightly slower cousin when I'm in the pool, once I reach the pool stairs reality sets in...and gravity hits.  I know this may not be obvious to perfect strangers, so when I was attempting to leave the pool at the end of class and there was a teenage boy standing on the stairs, I politely said "Excuse me...I need to hold the railing."  He looked down at me like I was a dead bug floating on the water, and instead of stepping out of the way, he moved his Bermuda-short clad butt an INCH to the left. Okay...maybe that wasn't enough information.  I decided to give him the benefit of the doubt, and provided him with a little more..."PLEASE excuse me...I'm disabled, and need to hold the railing."  The look I got this time told me I'd been demoted to the slime that floats UNDER the dead bug, as he scooted his butt over another tiny, little inch.  Now, I'm a pretty small person.  I'm thin, and short...and really not much of a threat.  Or at least not at first glance!

I'd like to think I am able to handle every frustration that comes my way with dignity, and grace.  Remember that inner grace I mentioned in my first post that I usually have a lot of?  Well, in a perfect world I would have sat this boy down and had a nice long talk with him, presenting my case while providing him with the tools he he could grow into a respectful young man who advocates for disabled rights everywhere.  What actually happened was a lot less graceful...Flash Gordon's slightly slower cousin was replaced with The Hulk, as I glared up at his smug expression and bellowed "MOVE, YA LITTLE SNOT!!!!!!"  Not so graceful, but quite effective!  The smug expression disappeared as the snot slunk out of the way, I held the railing and safely climbed out of the pool, and the rest is history.  And what have I learned from this experience?  Well, I have learned that a little respect goes a long way.  That lifting your head up and out of the fog you surround yourself with, to see who and what lies beyond, is always a good thing.  That there may be someone right in front of you who needs your help...and this person may just be the one to offer you a hand down the road when you need it most.  And I learned that I may not always have as much inner grace as I should, and when I am lacking I should be short, sweet and to the point.  And when all else fails, YELL.  

So after you read this post, and you go about your day, take a few minutes and look around you.  Do whatever it takes...stop texting for five minutes, so you can look at the person in front of you and offer them a smile.  Instead of tailgating the car up ahead, relax a little and let someone merge into traffic.  If you're walking behind someone slower than you while entering a store, don't run around them because you're in a patient.  Maybe hold the door for them instead!  And if you are leaning on a pool railing and someone else needs to use it, no dirty looks are necessary...just hike up your Bermudas, put a smile on your face, and politely move out of the way.  Your kindness will be much appreciated!

Friday, October 22, 2010

Miracles do happen!, I wanted to talk about this thing that happened to me at the pool a couple of days ago that was upsetting.  But I didn't want to get caught up in the negativity of it all, and decided I needed to do my deep breathing exercises and work through my anger before I put my experience into words.  Anyone out there who has had a moment of complete insensitivity (on someone else's part,) knows what I'm talking about, and has probably done some special breathing of their own...what works best for me is a deep, quick breathing technique that sounds like this: "HEE...HOO...HEE...HOO...HEE...HOO" that's kind of like Lamas, but with less cramps.  So while I do that I'm going to write about a good experience instead, so I can end this week on a happy note...hopefully I won't pass out in the process!

I decided to write about you believe in them?  I most certainly do!  I think the reason some people don't believe in miracles is because the big ones don't happen very often, and we cannot always see beyond the bad times in our lives to notice the small ones.  Though there are tiny miracles everyday that are God's little reminders to be thankful for the good things...a beautiful sunset, all the green lights on the way to work, a random $5 bill in your pocket you didn't know was there.  My favorite one is seeing the smiles of my two beautiful nieces, and hearing them can't get much better than that!  My friend 'A' gave me a plaque last year that said "Look for the small miracles and you'll find, they're everywhere" and he is absolutely right.  I try my best to lift my head up and look around every so often, so I can see these little miracles...and sometimes I fail.  But I keep trying!   And I was blessed to have a BIG miracle come to me during one of those difficult moments when desperation overwhelmed, and there seemed to be no answer.

In an earlier post I mentioned that I was finally diagnosed with CMT when I was 25.  That was a miracle in and of itself, to finally have a name for my symptoms.  After being diagnosed I got my first set of leg braces...also a miracle, though not always easy to see.  Yes, I needed them to walk...I could no longer manage it on my own.  And yes, having those braces and being able to walk without falling was a blessing...but it also felt like a curse.  It took a lot of strength within me to get used to those things...they were cumbersome and hot, since they covered the backs of my legs almost up to the knee.  My tiny little sized 5 1/2 feet all of a sudden seemed HUGE in these sized 8 1/2-9 shoes I had to buy in order to accommodate them.  And my braces were EMBARRASSING!!!  Part of me didn't want this "blessing" that had come into my life, and I would hate my braces every time I got stared at or pointed at, or I heard a child ask their mother "Why is she wearing them, mommy?"   And I knew how important they were...I remembered my life before I got them, and how much I struggled.  I knew these braces took a lot of that struggle away.  But as I mentioned before...I try to lift my head up and look around so I can see the miracles in life.  And sometimes I fail!

Those braces did serve me well, though, for 10 years.  I couldn't have gotten through those years as well as I did without them!  But time, as it often does, took its toll...and my ability to get around (with only my old friends to help me,) was decreasing.  Walking was becoming difficult again, and my balance had declined so dramatically that I was never far from a wall.  I literally hugged the walls as I walked around my home, and a short walk from my car into a store seemed as long as a football field.  I skipped a lot of things except for the bare necessities such as food shopping, which had become a huge chore...I had taken to parking next to the cart holders so I could grab a cart in order to have something to hold onto, just so I could get my shopping done.  My ability to function was failing, big time!  Surprisingly enough I could suddenly see what a blessing my braces really were...but I knew if an even bigger blessing didn't come my way soon, they would no longer be enough.

Now here's where the miracle comes in...because I have learned (sometimes the hard way,) that God does listen.  And there is no other word other than 'miracle' to describe what came when I most desperately, completely needed it.  It all started when my friend 'K' contacted me about something called 'Dynamic braces' that were supposed to greatly increase a person's balance.  K's mother, who also wears a leg brace to help her walk due to post-polio symptoms, had attempted to find these braces but had so far been they put me on the search.  For some reason it didn't take me long at all to find them (part of the miracle, perhaps?) and before I knew it I was scrolling through a website, dedicated to Helios Orthotics that restore balance!   I read testimonial after testimonial from people who suffered from the same balance issues I dealt with everyday, who spoke about how they had their balance restored by these wonderful 'Dynamic' braces.  Comments such as "...standing perfectly still without touching anything..." hit home.  I REALLY needed to get these!!  And the best of all?  The website had an entire SECTION dedicated just to CMT.  A guide explaining the different types of CMT (did I mention there are different types?) and which Helios braces might benefit which type...I was in shock!  And what surprised me most of all were those testimonials I mentioned...the majority of them were written by people with CMT!  Before I knew it I was on the phone, calling Ortho Rehab Designs in Las Vegas.  Soon I was talking to the office manager, learning even more about how the braces were made and the doctor who made them.  In order to get them, I would have to travel to Vegas, a place I had only seen on episodes of CSI (maybe not the BEST example!)  And it would be costly and a little scary, but I was determined...I have to admit--I probably would have crossed a river of hot coals on my backside at this point, in order to get the answer to all my struggles and prayers.  Every second without these braces seemed longer than the last...I learned that there was an opening in November for a new patient, which was less than a month away.  This seemed to good to be true! 

And then it happened.  Before I say exactly what, let me explain...the cost of plane tickets and hotel fares seemed unreachable, but I knew I had to manage it.  I had gone through the process of filing for Social Security Disability because of suffering an injury a few years prior, and after two years of denials and appeals I had finally won my case.  Now anyone who has tried to live on disability payments knows that they don't stretch very far.  And for the two years I was filing for SSD I hadn't been allowed to work at all, and had just gotten permission from my doctor to start working a light duty job on a very part time basis.  I was owed retroactive pay, though had yet to see a penny.  In fact I had no idea when that money would come, because there was no date stipulated as to its return...government bureaucracy at its finest, people!  So now to the dropping ball...I asked the office manager the cost of these dynamic, balancing braces.  And you wouldn't believe it--the cost, which was paid up front, was $12,500.00.  The reason for this?  They consist primarily of carbon fiber, which is used to make weapons for the war, and supplies at this time were very short.  Medicare would cover about 40% of that and I would eventually get some money back...EVENTUALLY.  But there was no way I could ever hope to afford them!  As it was, I couldn't even afford to travel to the doctor who had the power to dramatically change my life for the better.  Tears started pouring down my face, as I thanked the woman for her time and information, but I regretfully declined taking the appointment in November.

Now I did say I wanted to end this week on a happy note, so don't worry...the story does get better, really!  Remember the big miracle I mentioned?  Well, after learning about these wonderful braces that could make everything better and bring back so much of what I had lost, and knowing they were beyond my reach--I can honestly tell you that miracles were the last things I was thinking of.  Nothing seemed possible at that point.  Though this turned out to be one of those times I would learn just how much God hears us.  That retroactive pay I mentioned, that could take months, maybe even a year or more before it showed up?  It was deposited into my bank account THE VERY NEXT DAY.  Enough to pay not only for the braces, but for my trip as well.  If that's not a miracle, I don't know what is...a true blessing!

And the new braces certainly delivered!  If any of you readers want to learn how, check out the website and read more about Dr. Mitchell Warner, CPO at  As for me, I'm thrilled!   I gained my balance back, and my functionality...I don't even park next to the cart drop-offs at the grocery store anymore, because I don't need one until I'm actually IN the store.  Once again I am living my life (now in size 6 1/2 shoes,) and there are no football fields in front of me!  See?  Those miracles do occur...big and small.  You just need to open your eyes, look around you...and believe that they can.  Because they will come when you least expect it!

Monday, October 18, 2010

We're here to stay!

Okay...time to dive back into the world of CMT, or really just disabilities in general.  Let's at least get our feet wet!  I must admit, the mouse story distracted me just a little bit...thanks mom!  Though after a discussion I had with a friend of mine the other night I knew it was time to *DRAG* myself away from the mouse madness, and back into the world of disabilities. 

My friend 'G' came over to see the new apartment and have dinner.  We talked for hours, laughed like a couple of hyenas and shared silly stories as we always do when we're together.  G and I aren't able to get together that often, but when we do, watch out!!  And it has been a while since our last visit, so one of the things I showed her was this blog.  We got to talking about CMT, finances, working and trying to pay the know, happy topics like that!

G often talks about her childhood and I must say her stories are always interesting...she is one of eight children, the only girl surrounded by her many brothers, younger and older.  She grew up in NYC, a place that frankly frightens me with its many noises and smells, not to mention all the people.  I grew up in the country with one brother and one sister, surrounded by trees and birds, and a cornfield across the road...quite different!  When G talks about her family, I especially like to hear about her mother...I've never met any of G's family, but have no problem picturing her mom in my mind, mostly because of her strength and determined spirit.  This woman raised all eight children alone and did so with a firm hand, though loving nature.  She always managed to put food on the table no matter how tough things were.  And on top of doing all these things without the support of another parent, G's mom also had an added of her sons was born with Down Syndrome.

Back in the 60s, the number of people confined to institutions had just begun to wasn't until the 70s that laws were beginning to change, allowing disabled children to enter schools.  Children with Down Syndrome, along with many other disabled children were not truly welcome in the school system until the Education for All Handicapped Children Act of 1975 was passed.   Integration models did not exist in schools as they do today.  As with many disabilities, at that time not much was known about the life expectancy of children with Downs or their quality of life, and people did not take much time to help these children develop and explore their abilities.  And yes, people with Down Syndrome do have many abilities, and are perfectly capable of being functioning members of society...if only the people within their world are willing to see what they have to offer, and give them the help and space they need to grow!  G's mother helped her son face these challenges over the years, and struggled to help him fit into a society that was not and still is not always accommodating.  And why, after all these years is the world still falling short?  Maybe the main problem lies within the word 'disability.'  The definition of disability is 'A lack of a given ability, which may be physical, cognitive, sensory, emotional, developmental or some combination of these,' according to Wikipedia.  Though this definition does not allude to the fact that a person who has a disability in one area may excel in only talks about how they are LACKING.  Or maybe the definition is sound, and we LACK the ability to truly understand we often lack the ability to understand the disabled.  Because if you think about it, saying that someone lacks a certain ability does not even begin to explain what that person is like.  I've currently seen several political figures that in my opinion are severely both honesty, and moral fiber--yet these people are not considered 'disabled.'   And as far as I know, people who are labeled as having a disability do not walk around with signs on their foreheads stating what their 'abilities' are (hmmm...maybe I should try that!) even though those abilities do exist.  Unfortunately, it is often difficult to show what you have to offer when the world around you continues to fall short in understanding and acceptance.  

In the September 5th issue of Deaf Digest, writer Sandy Lahmann states that people with disabilities are the largest minority group in our nation.  As of today one in five Americans, which is approximately 54 million people, have some type of disability (Title of article: Disability 101: Our Largest Minority.)  And yet despite the fact that there are so many disabled people in this country, it often takes years--decades even, for disabled people to be accepted within their schools, their workplace, their communities.  Why am I taking the time to mention this article and discuss this topic?  For the same reason G's mom fought to carve out a place in this world for all of her children, especially her disabled son; because they MATTER.  Back then, her children wanted what all children be accepted just as they are, and to be given the same rights and opportunities as their peers.  And all adults, regardless of their differences, want this as well; to be accepted for who they are, inside and out.  This is America after all, a country where all men are created equal...not all men 'except those who are disabled.'  Because no matter what areas people may be lacking in, we all have abilities...we all have the right to be a part of this world, and have a voice; and this right exists, not in spite of our differences, but because of them.  And we are here to stay!         

Saturday, October 9, 2010

This is for you, mom!

Okay...there's something I have to say which has been on my mind for some time.  Ahhemmmm...hi, my name is Christine, and I'm afraid of mice.  WHEW!!!!!!!  Glad to finally get that off my chest!

Now that you're thoroughly confused, remember I said I'd be sharing some of the crazy, silly things that happen to me, and they wouldn't always be related to having a disability?  Well, here's one of them.  And my mother's been begging me to post this story, so you can thank her!  I recently moved into the same complex my parents live in...and don't worry, it's not like that show 'Everybody Loves Raymond' where the parents show up unannounced to drive everyone bonkers.  I like having them nearby!  And the complex is beautiful, and quiet.  And most of all,  it's MOUSE FREE.  That is definitely the biggest plus in my book!
And I have to explain about my old apartment, because I don't want to give you the wrong was a nice place.  The layout was good, it had plenty of light, and even though the kitchen was a little small it was functional.  The main reason for moving was safety...I needed a place without stairs, a washer/dryer so I would no longer stress my back trying to carry laundry, and other small things such as faucets I could turn on and off easily.  (Okay...I guess this story is kind of disability related.)  And it's not like it was RIDDEN with mice, it was just one very determined little mouse.  And no matter what I did to stop him from getting in, he still managed it.  I started out with sonic buzzers which worked to an extent...if I didn't have them I'm sure the mouse would have been a daily visitor, along with his extended family.  And I didn't want to hurt him; I just didn't want him in my HOME.  The main problem with the buzzers is that I could hear them, even though the package specifically stated that they couldn't be heard by humans..only mice, who were supposed to be repelled by the sound.  Yeeaahh...RIGHT.  So I started out with three.  Once I realized three wasn't enough I graduated from tiny sonic buzzers to giant, ear-splitting, OH MY GOD...I'M COVERED IN BEES!!!!! buzzers that nearly drove me insane.

Now if you've been reading my post and if you have read my profile, you already know I'm a cat mom.  I have two very beautiful, very different cats.  My female cat is named Scout, and she just turned 13.  She is actually disabled like me, though her disability started from an adverse reaction to anesthesia when she was four.  Like me she has adapted to life, and though her legs don't work the way they should she manages to get around.  She is very sweet, and often very crabby, and pretty much rules the household!  My male cat is named Shay, and he is a handsome tuxedo cat who is also very sweet, a little skittish, and extremely loving.  EXTREMELY.  I really can't stress that word enough.  You would think having two cats would take care of any mouse problems, right?  WRONG.  I really didn't expect that Scout could do anything about the visiting mouse, because of her difficulties and her age, but assumed that Shay would easily take care of the problem.  That's when I discovered that Shay is truly a lover, not a fighter...and the mouse?  Has a BIG set of cajones!!

The first mouse visit was on a Saturday.  It was just after the weather started to get colder, and though I'm sure he originally came in to warm up, I'm positive he came back because of Shay.  Who, to his credit caught the mouse seconds after he entered my home through the kitchen, and proceeded to walk around the apartment with it clutched in his mouth.  I was sitting on the couch in my pajamas, which was where I spent the next three hellish, fear filled hours as I watched an unnatural bond form between my loving cat and the mouse, who soon became his new best friend!  Shay would drop his friend every so often and they would play a game of chase, which I'm sure completely thrilled Shay...he's been trying to play with Scout ever since joining our little family, and she's been having NONE OF THAT.  Finally...someone to PLAY with!  And so the day continued.  Shay would chase the mouse, catch him once again, over and over...completely impervious to my screams.  I stayed on the couch because I assumed mice couldn't climb...oh--silly me!  That small hope was dashed against the rocks once I saw the mouse climb the wall.  Yes, THE WALL!!  That's when I knew I had to be brave.  My opportunity for bravery came after Shay (once again) dropped his friend.  Instead of starting the next game of chase, the mouse just stood there gazing into my cat's wide, loving eyes.  Then they touched noses.  I swear to you, it's was like something out of a Hallmark movie.  If I wasn't so paralyzed with fear, I might have been moved to tears!  Fortunately Shay had dropped him in a most convenient front of my door.  My front doors were glass, and the sun was streaming in on the friendly pair...did I mention Hallmark?  And I knew that even though it was risking life and limb, and the mouse might actually jump up and touch me, I had to take a chance.  I made my way over there, as close as I dared.  Using a rain stick (a long, hollow stick filled with rice that sounds like rain when you turn it,) which I luckily had sitting on a nearby bookshelf, I opened the front door with one hand and prodded the mouse lightly with the other.  Holding the stick, of course.  And you know what??  The mouse didn't want to LEAVE.  Why would he?  He was warm, had probably found the only cat within a 50 mile radius that befriended mice...who could ask for more??  But I was tired and determined, and finally with enough prompting Shay's new best friend left my home.  And other than having to endure the looks of disdain from Shay for the next few days, I couldn't have been happier!

So life continued on; I got more mind-numbing, ear-splitting buzzers and went about my day.  And less than a month ago I moved into the safe, sunny mouse-free apartment I now call home.  Though before that happened, my nightmare returned...on the last night in my old place, surrounded by boxes and just short of midnight, Shay's best buddy came back!  Now I knew at this point that sitting on the couch screaming like a banshee would get me nowhere, and I was determined not to spend my last night in fear!  So I got the broom and dustpan from the kitchen (Why?  I was hoping I'd be brave enough to sweep the little menace into the dustpan and carry him outside, but who are we kidding??) and proceeded to follow the two furry friends around the apartment, screaming like an idiot.  After a while, with Shay staring at me all wide eyed (Mom, have you been washing the fruit off BEFORE you eat it??) his little buddy ran into a sneaker; part of a set I hadn't managed to pack.  So I grabbed the flashlight (without putting down the broom/dustpan combo...for protection, of course!) to see if the mouse was truly in the sneaker.  Crawling around on my hands and knees while holding onto a flashlight, broom and dustpan and screaming my head off has got to be one of the strangest things I have ever done.  Oh...but it doesn't end there!  Once I determined that yes, he actually was in the sneaker, I moved onto the next level of weirdness...tipping a box on it's side, I pushed the sneaker and it's mate into it (because of course, I never planned on wearing them again--EVER!) and proceeded to push the box out the front door with the broom.  Still holding the dustpan.  And the flashlight.  And yes, while still screaming at the top of my lungs!            

So now my days and nights of mouse-induced fear are over; it is calm here, to-date there has been no furry little visitors, and no one is screaming...least of all me.  Of which I'm sure my new neighbors are thrilled.  And other than the fact that Shay spends his nights sitting in front of the oven waiting for his friend to come back (Yes...he really is doing that,) life couldn't be happier!  And let me go on record by saying that I wish the mouse the best of luck...may he find another warm, happy and loving-cat-filled home with a human that embraces all things furry, and has less tendency to scream.  I'm sure my old neighbors would greatly appreciate that.

Thursday, October 7, 2010

So What Now?

So before I talk about all the other silly, crazy and often funny things I deal with in my life (and not all of them involve having a disability,) I figured I should give you even more background on CMT. It is after all a big part of my life, and likes to rear it's ugly head at the most inopportune moments, so I need to give credit where credit is due! I mentioned in my last posting that CMT often goes undiagnosed, which can be very frustrating. When you are experiencing multiple physical symptoms such as trouble walking, tripping and falling down--not to mention difficulty with the function of your hands, it can be disheartening to see doctors and neurologists and suffer through test after test, yet never get a name for your problems. And it happens quite often to people with CMT. I didn't know for many years what was actually wrong with me, only that something WAS wrong. Once it was discovered that I had CMT it was like a weight had been lifted! I have to admit, there was about 30 seconds of shock when I first heard the name (Charcot-Marie-Tooth syndrome?? What the heck is THAT???) followed by a sense of...well, peace. That probably sounds silly...Peace? Really?? But I swear to you, that's how it felt. It isn't that I found out I had this thingy with the weird name, and low and behold there's a of right now, there is no cure. It was just finally knowing what it was and having a name I could reference when I needed it, that felt so peaceful.

Though there are other frustrations. Okay...I have CMT. So, what now? Where are all the other people with this thing? I guess part of me expected that now it would all change...that I would walk into a room, and suddenly there would be all these people there who also had CMT and dealt with the same daily struggles I dealt with, and we could become a group. And I wouldn't be alone. But it didn't happen like that...mainly what happened is I kept living life as I had before; adjusting how I did things to improve how I functioned and dealing with things as they came. I had some changes, such as getting leg braces so there was no more tripping and falling. That was certainly an improvement! I continued to learn how to do things differently with my hands so that I would be more functional, and I found a great hand therapist who helped me to succeed. But part of me would keep looking around the next corner...where IS EVERYBODY??? I can't possibly be the only one who has this! I was finally diagnosed in 1997, though I didn't actually meet anyone else who had been diagnosed with CMT until June, 2010. So you can imagine how many years I have been feeling like I was a stranded alien who had been dumped on this planet.

I was very fortunate that a local CMT support group began in April of this year...finally I would meet someone else with the same issues! And it's been a wonderful thing--I've met so many new people that know what I've experienced, and when I say 'CMT' I don't have confused faces staring back at me...(CMT? What the heck is she TALKING about???) I highly recommend finding a support group to anyone who feels lost with a situation...whether you are living with a disability or some other form of stress. And if you cannot find one, consider starting one...and don't give up. I promise you...there is other life on this barren planet you've been living on, and they do speak your language!

So what happens next? Well, I am helping to raise awareness about CMT not only by starting this blog, but by going to meetings and sharing my experiences. September 19th--26th was recently designated as CMT awareness week across the country, and many things have been happening to raise money for research toward finding a cure. The wonderful woman who started our support group was able to get a local restaurant (TGIFriday's) to agree to host a fundraiser and donate money toward this research during awareness week, and we raised $885! The CMT association started the STAR program which is in charge of conducting this research, and the outlook is very good...we are getting closer and closer to finding that cure! If you would like to read more information on the CMTA website, log onto As for me? I'm still the same person I always was, though I have finally found my group...and life has gotten a little bit easier!

Tuesday, October 5, 2010

Let's talk about grace!

When you think of the word 'grace' what comes to mind?  Do you picture a tall, beautiful ballerina, toes pointed and long fingered hands sweeping in a graceful arc?  Or an Olympic figure skater completing a triple jump to cheers from the crowd?  Maybe you can even visualize a marathon runner, hands stretched toward the sky as they make those last few strides and break through the tape...all those pictures come to my mind as well.  I can see them so strongly, almost as if I am there watching those graceful people in person.  Though I am here to talk about other forms of grace...the kind of grace you cannot see.  The kind that is deep within, and helps you handle tough situations with flexibility and dignity.  This inner grace is what gets us through the day, helps us deal with daily stresses, and teaches us how to laugh at ourselves and embrace the positive throughout our lives.

I toyed with the idea of starting a blog for a while now, but would talk myself out of it...what on earth would I say?  Why would people want to listen to me?  I finally realized that I do have a lot to offer on a particular topic--what it's like to grow up with a disability.  How I deal with daily frustrations as a disabled adult.  And most of all, how I've managed to develop not only an inner grace, but also a sense of humor that helps me face these daily challenges.  What disability do I have, you may wonder?  Well, I have a neuro-muscular disorder called Charcot-Marie-Tooth Syndrome which effects approximately 150,000 Americans...CMT for short!  Don't feel bad if you've never heard of it--as disabilities go, it isn't well known (despite being so common,) and often goes undiagnosed.  My CMT symptoms started when I was 13, and I wasn't diagnosed until I was 25.  I personally think we need a yearly telethon with a funny/well known personality as host, but we haven't gotten to that point yet!

Now I realize I just said a mouthful...I gave you the funny name, told you how common it is--but what is it like?  Well, CMT is similar to MS, in the fact that you will develop a breakdown of either the nerve itself, or the myelin sheath that surrounds it.  And this breakdown can occur anywhere within the peripheral nervous system.  So let's see if I can create a picture as clear as that ballerina...imagine yourself taking a walk while wearing cement shoes.  You can't pick your feet up and it feels like they are so HEAVY, and you know your feet are there--you can see them.  But they feel strange, and numb, and did I mention heavy??  And the further you walk, the heavier they, cement shoes are really hard match to an outfit!  And imagine trying to write out your grocery list while wearing heavy mittens...your writing gets sloppy, it's hard to grip the pen, and once again you KNOW your hands are there (they were the last time you checked!!) and yet they feel kind of strange and numb.  Now these pictures are just a sample of what goes on in the life of a person with CMT, and it may seem kind of annoying, but there's ways to get around it...just drive everywhere, and have your groceries delivered!  But just imagine what it would be like if you could never take those shoes and mittens off.  EVER.  And just think about your daily routine, like taking a shower and making your breakfast...running errands...taking care of your your house...and all the thousands of tiny little things we may do in a day, all while wearing this stylish and cumbersome apparel!

After the pictures I just created, you can imagine that I'm not the most 'graceful' person around!  I still have nightmares about High School Gym class and not being able to successfully complete a perfect squat thrust.  (But seriously...when am I EVER going to use that??)  Though remember...I'm talking about inner grace.  I've managed to develop my inner grace in the face of the challenges I deal with everyday, and it keeps me strong.  It helps me laugh at the occasional absurdity of life, and puts a smile on my face.  And most of all it keeps me going.  Do I get frustrated?  Absolutely!  Anyone who deals with challenges, whether they are from physical limitations or financial difficulties--or the many other stresses we may face--gets frustrated, even angry.  Though I try to let those feelings happen and acknowledge them, eat a plate of brownies while watching a funny movie, and then I move on.  Those cement shoes and bulky mittens will still be there in the morning, but they'll feel a little lighter!