When I came home last evening at the dinner hour and walked into the living room, Diane was in her seat on the couch, watching her favorite program, “Law and Order.”
With a comforting smile, she said “I’m glad you are home.”
I bent over to kiss her, handing her the day’s mail, the newspapers and a special book she had ordered.
She looked so normal, robust even.
As if she will live for 25 more years, that we will continue our locked-in daily routines, that she will say every night, “Your dinner is ready. Just needs to be warmed up,” that we will go to the movies on Saturday nights at our favorite Santa Monica theatre, that we will go to the gym on Sunday mornings, followed by our weekly pilgrimages to the supermarket and then to the kosher butcher, followed by breakfast with my oldest son, who turned 33 yesterday.
A month after she officially was diagnosed with ALS — and months after she had identified her disease — the external changes are almost nonexistent. At a glance, she scarcely has changed since the moonlit Saturday evening that Rabbi Pogrow married us.
That is one dimension of the nasty nature of this disease, that if you are not the victim, you can be seduced, lulled into a prodigious misunderstanding. Fat chance because it is in the forefront of my mind every hour.
Internally, the flaming war would dwarf Ukraine, Syria, Egypt and Nigeria. Every morning when I inquire about her feelings, the answer never varies: “I feel weaker.”
Later this week, her walker is scheduled to arrive, displacing her cane. So much for the appearance of good health.
