Monday, October 12, 2009

It's o.k., I don't mind, No really...

Envy is an odd thing to live with and when it dances with Jealousy the music of my life can take a bitter turn. MS chips away at my nervous system and bits of me stop working, become weaker, and, without warning, add another odd symptom to my list of complaints. And then, as in the recent 'loss' of my left little finger, the entire mourning process of MS loss begins again. How can I accommodate this? Is it worth a trip to the neuro? Is it permanent and how pervasive? Most importantly, what will my life be like now with this latest loss. Can I still open the toothpaste tube or hold my hairbrush or zip my jacket. The little finger does much more than I realized. It isn't completely weak--I can move it and at times it is stronger than at others. 
So where do E&J fit in to the distracting, discouraging, and insidious weakening of a pinkie? It is like the old groaner, "Doc, will I be able to play the piano? She responds, Yes, if all goes well." You reply, Great, I couldn't before"  So one little digit won't cost me the ability to play a 12-string guitar or knit intricate sweaters. The envy and jealousy I feel isn't about a particular ability someone has that I once did; although I would give just about anything to have my career back or glide off on a bicycle or tend a vegetable garden. OK, so maybe there is envy and jealousy here. When I hear someone kavetch about their busy schedule with work and kids and church and and and.... I confess to dancing a few laps around the ballroom with these two emotions.
My experience with these evil twins is subtle and insidious, and most importantly, steps on the path I take to isolation and loneliness. How can 'normal' person understand living life with the relentless assault of MS loss. 
As a result I put on my 'happy happy joy' face and tell you it isn't so bad. I focus on the practical losses and tidy up my emotions. MS has its own language and is almost impossible to translate into english. I can show you my droopy finger or draggy left foot or tell you why I use a wheelchair. But, I can never adequately express the deeper emotional impact or the internal world of life the MonSter. 
What is a finger worth, I have nine more. No, actually, my pointer finger went south years ago, and my right thumb requires a hard plastic brace to work at all. So, that leaves me with seven, more or less. Will another start to fail today-this minute, or tomorrow? And, what about my toes, my eyes, and on and on. Every inch of me is run by a complex system of nerves and as I understand it, can be affected at any time. 
The impossible task is to live with knowing that any and everything could be impacted at any time. And somehow build a life of safety and security on top of this unreliable foundation. For me, the deeper foundation is the surety of God in my life. Without that, I don't know how I would live with the envy for and jealousy of the life I no longer live.


Stuff could always be worse said...

You write so well, about the MS and what it takes, but since I have had it so long, I forget what I used to do most of the time. Now I try to build a life with what I have left, with the body, but it cannot take me, with God's help. Great Post and you should write as often as you can,

Bibliotekaren said...

Oh Janine, there are many well articulated points in here -- not sure which to address. The revisiting mourning each time something new is lost jumped out at me. Yes, just as the ground stops moving underneath the feet... Also, that E&J is a sure path to isolation and lonliness. Thanks for sharing.