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!