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 gotten...to 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?
Oh Christine, another lovely post... and that last line says it all. Peace and good to you!
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