Here's to 2011 -- I Think...

     The old year is about ready for the trash pile, along with Christmas dinner scraps, tattered gift wrap and empty boxes.  Not, I might say, a moment too soon.
     2010, to put it mildly, sucked.  Big time.  I lost my job, lost my lovely mother-in-law, lost much of the use of my hands, and gained an ALS diagnosis.  Delightful. 

Self-portrait with Support Team

     Some things just cannot be gotten around,  but they can, somehow, be dealt with.  My joblessness is not half bad, thanks in part to my company's "tin parachute"  (far from gold, but a parachute nonetheless... and the least those #$%&^s can do...).  I have re-discovered painting and writing, reverting to one-finger hunt-and-peck and experimenting with wobbly left-handedness.  I have reconnected with dear friends, finally having lost the burden of constant busy-ness.  I have a new and lovely relationship with my husband:  we have always had each other's back, always offered each other true caring, but now it is colored by time's finite limits and brightened by shared adversity. 
     I have tried to turn the finite and the adverse into pluses wherever I can: varying degrees of success, but always trying.
     So that's how I've been saying good-bye to 2010, sending the sucker out with a flourish and a fanfare.  I did up Christmas in a big way.  All the decorations, all the tchotchkes, all the gifts for kids & grands.  I baked cookies.  I made candy.  I had guests over for a traditional roast beef dinner (with plum pudding to boot).  I created a new painting for my husband and started another for myself.  I've made lunch plans with friends, Big City adventure plans with other friends.  I am doing as much as I can while I can. 
     I don't know how long that will last.
     I don't know what 2011 will bring, but I have hope.  Practicality, too, and planning, and awareness, because I know full well what "progressive disease" means.  So that whatever comes, I am sure it will not arrive with the devastating surprise and shock of 2010's events.  At least, not as much.
     I think....

     Happy New Year to all.  May 2011 treat you with kindness.

Mirror, Mirror On the Wall...

      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.