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.
