I will soon be taking the next step in my long journey, to determine what type of CMT I have. As I've mentioned in past posts, there are two types of this disease that are being focused on by the team of CMTA scientists, as they strive to find a treatment and cure: type 1A and 2A. Everyday we step closer and closer to finding a medication that will stop those types of CMT from progressing. Why are those two the main focus? Because they are the most common types of CMT...and there are about 50 different types. Yikes! What a daunting thought...although just a few years ago, the scientists weren't even looking for any sort of medication. They hadn't even become a group yet. And even though every problem has a solution, sometimes it takes a while to find it...and your patience is tested in the meantime.
So each step needs to be taken one after the other, and often there's a lot of time that passes in between. On Monday I'm taking the next one, and having my blood test for type 2A...I already know I don't have 1A. One down, only one to go...hopefully! According to my insurance company, the test will be covered...all $900 of it. I'm hoping they stick to their word, as that seems to be a skill a lot of insurances are severely lacking these days! And I'm praying the test shows that I have type 2A, and finally the mystery will be solved...and within a couple of years there will be a medication that stops me from getting any worse. There is a good chance I have this type, but if it turns out that I don't it kind of puts me back at square one...each type is tested individually, with a $900 price tag attached. And the waiting game will begin once again, as I wait as patiently as possible for the medication to be discovered for 1A and 2A, so the focus can turn in a new direction. I have found that I can be very patient in a lot of different circumstances...though I'm not sure if this will count as one of them!
So as I sit here waiting for Monday to come (while trying desperately not to gnaw all my nails off,) I realize I need a distraction. I have my painting to turn to, though when I take a break from creating I need to have something to fill the gap. So I started thinking about funny stories from my past to change my focus, as laughter always does that quite nicely! There's a lot of memories that come to mind. One in particular occurred during a big change in my life, when I was 13 years old. I grew up in the country across from a cornfield, with willow trees and a little creek in my back yard...people seemed few and far between in those days, my best friend at the time living a mile away. Now my best friend (a different person,) lives about 30 seconds away! My current world is much different than my sheltered country childhood, and when my parents decided to move the family to Guilderland, NY, we might as well have been moving to China. Uprooting our lives was a scary prospect, though essential to shorten my parent's commute to their jobs in Albany. I was quite shy at that age, and as I didn't drive I couldn't see the sense in our move...all I knew was the school I would be transferring to was HUGE, no one would like me, and I was positive I would never see another tree as long as I lived.
Most of that turned out to be false...the school was huge, but I met my best friend K on my very first day (the one who is now 30 seconds away.) And we had trees in our yard--front and back, and although there were other houses across the street instead of corn, there was still enough foliage to make me happy! Though on my last day at my old school I didn't know things would work out, and the fear of change was larger than the change itself, as it often tends to be. I don't remember much from that day...I'm sure I barely said a word to anyone, and probably didn't learn a thing. All I do know is how scared I was, not only of where I was going but that I was going in the middle of the school year...friends would already be paired up at the new school, and teachers would already have their routine. I would be an interruption...and my brain just couldn't get past that. So on that last day my morning classes came and went, and soon it was lunch time. I stood in line with my plastic yellow tray, not paying much attention to the food that was placed on top. Finally I was in front of the lunch lady running the cash register..."That'll be $1.17," she said to me, and I reached into my pocket. Ooops! I thought, as I realized my pocket was empty!
To this day I don't know where I got the courage to say it--normally a problem like that would send me into a panic! But for some reason I didn't panic at all...maybe that was because not having the money to pay for lunch was small potatoes, compared to the changes I was facing? I'm not really sure. All I know was I looked her straight in the eyes and replied, "Well, this is my last day, cause my family's moving...and I have no money. So consider it a gift!" and I grabbed my plastic tray and left the line.
Really, if I could go back in time and ask that 13 year old Christine where she found the chutzpah to say those words, I would...if I could bottle that calmness, I'd do that too. Maybe the trick is to remember that no matter how scary things seem, the obstacles placed in front of us are usually surmountable...or maybe I just need to remember that laughter is always the best medicine, and to laugh as much as possible. If nothing else, I probably made that lady smile, and got a free lunch in the process. And in the end I'm left with a funny memory, to last me a lifetime!