[img]2624|right|Diane||no_popup[/img]As I write this, Diane is lying in the bed behind me.
Surrounded by a right angle mountain of pillows to maximize her comfort level, nearly every nosh or activity she desires is within reach.
This has not been a good day. She has been haunted by a stubborn headache, a steady visitor.
Just home from a special film she strongly wanted to see, that experience, like all others since April, was more complex than her old healthy life.
“I am not who I used to be,” she keeps reminding me.
Her diet is upside down from before. She eats more sparsely, irregularly, and prefers nourishment that used to be out of bounds.
Headaches are common, and yesterday’s was a whopper. She loved the film but felt empty.
While she rode one of her two elevated chairs to the upper floor, I warmed a heaping Moroccan plate of raisin chicken and rice. She was satiated after several spoonsful.
I began writing at 4 o’clock yesterday. This is later than usual for her to retire on a Sunday afternoon. She is upstairs to stay for the day.
Emotional Moments
Hours before, we had participated in our fourth monthly ALS support group meeting in Westlake Village. At our gatherings, Diane, as a much-loved and broadly educated nurse practitioner, speaks eloquently to fellow victims and the group leaders.
This is a wonderfully therapeutic outing for her. For me, it is important, but more difficult. Since May, I am the only one of the 20 regulars who never has spoken. Who ever heard of a silent Irish Jew?
I have tried three times. The choking chops off my energy. It is embarrassing. I have left the last two meetings in tears.
Milestones
We are approaching the six-month anniversary of her ALS diagnosis. The rocky half-year has been dramatically different from what I had envisioned. In our home, it is easy to cry this season, and the subject does not have to be remotely depressing.
Everything reminds us of Diane’s amyotrophic lateral sclerosis.
As an Irish Jew, tears are as natural as breathing to me. Diane is better at hiding those moments than I am.
Saturday will be her birthday. Will somebody in Newspaperland please help me with an idea for an appropriate gift?
