Body Language

by Dean Kramer
October, 2007

What can my body do when I get out of its way? How much does my conscious perception of disability have to do with my actual degree of disability?

I used to play piano fairly well, specializing in Scott Joplin rags.

An interesting fact about Joplin is that his own playing was seriously affected by syphilis. Apparently the disease can cause severe neurologic damage. As his illness progressed his timing and coordination became iffy. People who heard him commented that it was painful to listen to him.

Many years ago, during the height of my last attack my own timing and coordination became iffy. I gave up playing because it was too painful to listen to myself. But a few weeks ago I decided maybe I’d try again. My disease seems fairly stable now with very minimal slow progression, if any. I bought an inexpensive electronic keyboard with 4.5 octaves and full sized keys.

I experience my right hand as having very little feeling, being both weak and poorly coordinated. It has become so difficult to use my right hand that my left hand gets disgusted and grabs things from my right hand as if to say, “Gimme that, you idiot! Let me do it!”  But apparently my right hand experiences itself differently.

If I sit at the keyboard and direct my right hand to play a certain passage, sure enough it misses notes and refuses to come down on the key I want it to hit. Okay, cue the Twilight Zone music. If I ignore my hands completely and leave them to work it out between them my right hand seems to know just where to go. It even manages this without my looking at the keyboard. I don’t play any of the pieces perfectly yet but I play them flowingly and more perfectly when I get out of my hands' way.  It’s a very weird feeling to realize I’m an obstacle to my own hands.

On another level, I used to do a good bit of heavy landscape work both professionally and here at Cripple Creek. For some time I’ve been aware that, for the most part, such work is no longer possible. So, last week I called a tree service to come and trim a 20 foot tall dogwood that was growing too close to my back windows. I was afraid that, laden with winter’s ice and in a strong wind, it might break the glass and invite itself into the room.

After leaving a message for the tree guys I decided to take a closer look myself. This meant descending the back stairs and staggering into the yard with its uneven terrain. So I took a walking staff. Prudently, I also decided to take a small pruning saw and loppers. If there was anything I could do with the tree, myself, better to have the equipment with me than have to stagger back up the stairs for it.

I realized, once I got outside, that the dogwood had twin trunks. If one of them were completely removed the window would cease being threatened. But my balance is poor to begin with and my legs don’t lift when I ask them to.

[As an aside, I find this whole MS thing very frustrating sometimes because I have to concentrate on and use much effort managing my body. If I’m standing and I want to zip my jacket, the act of bending my head to look at the zipper causes me to lose focus on my legs, which, without my direct attention, begin to buckle. If I stop zipping and tell my legs to straighten and support me, I lose my grip on the zipper—frustrating!]

Meanwhile, in the back yard it was a beautiful late summer day and there were some interesting birds calling. I got caught up in reminding myself what bird makes those sounds and, while I was thus distracted, my body began cutting down the tree. Without my paying much attention, I sawed through the trunk so that the tree would fall in a safe and manageable way. I was actually startled when it began to come down thinking, “OMG! This tree’s about to fall! How will I get out of its way?”

But as it fell my body stepped easily to the side and guided it to the ground. I was so amazed and pleased that I tore into a spicebush that had taken over part of the yard and was ruining sight lines from the back window.  In a few minutes it, too, had been pruned.

I was tired then and staggered back into the house. But these events, the piano and the pruning have made me consider the effect my will and my perception have on what I can do. We usually think of using will and perception to further our abilities, pushing our limits. And I have seen evidence of that working in my own life with MS.

But there might be another level on which application of will only interferes with the body’s own wisdom. It isn’t always a matter of telling myself I can do something and then making myself to do it. Perhaps having entertained the possibility of doing something I just need to mentally sit down and shut up and let my body take over.

Why my body seems less affected by MS when my brain is disengaged I do not know. I sure am grateful, though.

For all of us, with MS progression comes the need to find ever more creative ways of compensating. Unless she gives up in despair, everyone with MS does this. Things that would have been easily and thoughtlessly done in the past now become challenging. Each of us with MS experiences this. And if we listen to our bodies, team up with them rather than fighting them, they sometimes have more to contribute than we’d have thought. We meet our challenges and succeed bringing both joy and self-esteem; and that feeling of, “I may be down but I ain’t out, yet!”

Now, there's a Pawlownia tree out there that needs some attention.