This afternoon at 4 o’clock will mark our first anniversary of Diane’s devastating diagnosis with amyotrophic lateral sclerosis, ALS.
In a small examination room on the fifth floor of Kaiser-Sunset, an ice-hearted doctor who believed compassion was for sissies, flushed the last particles of emotion from his system and pronounced the dreaded words, “You’ve got it.”
Diane, seated on an examination table, her legs swinging slightly, casually, never blanched, outwardly. Her response was memorable:
“I’m not angry, but my heart is broken.”
On the drive home, the car was quiet, except for blather on the radio.
I wanted to scream. In anger. I wanted to cry. I wanted to strike out.
Diane remains introspective after many years of marriage, not giving up much.
It feels as if each of the last 365 days has been an arduous test. Not a single one has been normal.
As Diane’s health has slowly, steadily declined, our daily routines drastically have changed.
For two months, she continued to trod the stairs in our tri-level, puffing, heaving until she was flattened. Chair lifts for both stairways suddenly uncomplicated in-house travel for her.
By July a walker had been introduced, a few weeks later a motorized scooter, and about that time, a wheelchair that has become a fulltime vehicle away from home.
Prayers from a loyal universe of friends have illumined our daily paths. Our angelic neighbor Shulamit has been a Godsend every Shabbos for 12 months.
With immense reluctance, Diane went into retirement on Dec. 31 from her beloved position as a influentially popular nurse practitioner with the V.A.
Caretakers were hired. Happily, she has adjusted seamlessly to daily life at home, and that is the most welcome progress of the past year.
She conducts business from her corner of the living room couch, surrounded by documents, telephones, newspapers and noshes.
With a tenderness that is stunning, the magnificent Caretaker Kate bathes, massages, dresses Diane every morning, then serves her first meal of the day. So soft are their tones, if you stood farther away than several feet, you could not hear.
Having been forced into a promotion, he who was a foreigner in the kitchen until last year now prepares all evening meals — as if he were on a first-name basis with the strange, scary appliances. Last year was the last time Diane was in the kitchen.
I used to wait to be served all of my meals. How quaint.
The most comforting development as we slowly wade through this disease for which there is no cure is this:
As Diane has become more infirm, her attitude has soared beyond the clouds.
Feels like a miracle.
Smiling, externally accepting the steel handcuffs clamped onto her/our plans, she is embracing life in a no-surrender mode that dually inspires and energizes.