Well, it took me long enough, but I just noticed something about my recent paintings: they're backwards.
In the piece titled "Self-portrait With Hands," my right hand is normal, straight-fingered and brightly colored; my left hand is ALS'd, curled and clawed and dark. A good picture -- only it's wrong. My left hand is really the good one, and my right hand is a mess.
I work with a mirror. So I paint my reflection, familiar and "normal" to me, reversed and a bit skewed to others.
All of which is not important in itself, but it made me think of other mirrors, other skewed perceptions.
I realize that I have been looking at myself, all too often, through the mirror of my disease. Every odd thing that happens, every "off" feeling, I have labeled a reflection of ALS. And, as the old song says, it ain't necessarily so.
A very reassuring set of meetings with my care team at Forbes Norris in San Francisco (and what a team -- I can't say enough good things about every single person there) has given me a new viewpoint and a new perspective. If I trip, it is not necessarily because of new ALS symptoms: maybe I'm just not being careful. If my legs get tight and lose flexibility, it's not necessarily because my ALS is worsening: maybe I just need more exercise. If I am tired, it's not necessarily because of ALS: maybe I'm (hey! what an idea!) just tired.
Of course I do have to be aware of potential new symptoms. I cannot deny the possibility that changes are, indeed, due to ALS. But I can't give the disease more credit than it warrants. I can't let my life's mirror reflect only ALS. My life is so much more than that. I am so much more than that.
Time to get out the mental Windex. Let that mirror shine.
Aunt Peggy,
ReplyDeleteI am glad you are looking at things in this way, and will undoubtedly lead to a you feeling much better.
The 4 A's are rooting for you and we love you!
In 72 hours we will be in Aggieland. Please give Uncle Scott a warm greeting from all of us.
Andy