Friday, May 9, 2014

The Cost

I have a challenge for you today.  In the course of your day pick one of the following to thoughtfully experience or think about:  pouring yourself a cup of coffee, putting your seat belt on, writing your name, playing the piano, holding a spoon, brushing your teeth, typing on a keyboard, holding a camera, or climbing out/into bed.

Do you think about the act of doing or experiencing any of these activities, ever? Is there ever really a need to do so?  For the most part, no, our bodies just respond to the will of our mind and we never think about such things as how our hands feel gripping a coffee cup, how the pen feels between your fingers, or how the soles of our feet meet the ground.

But what happens when you wake up and your body doesn't work the same as you have always known it to work? When there is trepidation in every simple action? What happens when your hands constantly feel like they're asleep: numb and tingling as if being pricked by dull hot needles?  What about when your coordination and balance are skewed and unsettled?  Suddenly, the steady and stable person you have always known has vanished, leaving you uncertain and hyper sensitive to the world around you.  

Some days I wake up and I feel like my body doesn't belong to me: it's not my own.  The very life saving medicines working to fight CF also come with a cost. My body. Every addition of a life prolonging measure and medicine comes at a price.  Some days my body feels like my own:  the body that I used to know and trust so willingly. I am the coordinated and sure footed me.  I am so grateful for days like this.  They seem utterly amazing.  Then there are days when I feel like a complete stranger in my own body: like I am meeting it for the first time.  I have to consciously think about how tightly I am gripping my toothbrush, how I must use two hands to take a drink out of a glass, how to hold a pen and write my name, and how one foot goes in front of the other.  My body is pretty tough, but some of the drugs to treat CF can brutally make my body feel beaten.  My hands, feet, and tongue feel numb.  My legs feel like jello.  My fingers tingle.  My body uncontrollably gets the "shakes." So badly, that I had a student ask why I was shaking yesterday.  The most frustrating part of it all?  My same mind feels it no longer has control over its own body.  

What do I do on these days?  Try my best to hide it from the world, grip the glass tighter, and do everything with extreme focus.  These days make me really live in each moment: I am aware of all my surroundings and how my body is working in that environment.  These days make me so grateful for the days I feel like "me." No one ever said this journey was going to be easy, and I am strong enough to live the life I have so graciously been given.  I am still loving, I am still passionate, and most of all, I am still breathing.  Every extra beautiful breath experienced with the people I love is worth the cost. Love to you all. 

Do you feel like a stranger in your own body?


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