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 CURE...as 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 http://www.charcot-marie-tooth.org/. 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!
Thursday, October 7, 2010
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 get...plus, 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 family...cleaning 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!
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 get...plus, 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 family...cleaning 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!
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