[img]2624|right|Diane||no_popup[/img]Dateline San Francisco – For the third time in six weeks, we were in a ground floor examination room yesterday morning at a storied, hushed research clinic downtown where we hope the progress of Diane’s ALS will be slowed if not arrested.
I was pleasantly startled by her statement.
“The longer we are here, the more the black cloud lifts,” my wife said, evenly, after having been given an experimental drug that we pray will block further inroads and lengthen her life.
Diane, is it you?
That single 11-word glint of psychological sunshine trumpeted a huge emotional lift in the unrelieved gloom that has bonily gripped Diane for half a year.
A medical scholar and a nurse practitioner tearfully loved by her VA patients, her illness surely has been worse for her than it would be for lay patients who merely ask questions. Diane does the answers, too, and typically they are depressing.
She is positive she knows every nuance in the ALS field. Too much knowledge can be debilitating.
Diane’s busy mind is monopolized by her disease every hour her eyes are open. She sees stormy weather in every corner of the Diane sky. She calls her rainy outlook realistic. I call it breath-shortening pessimism.
Enter Dr. K
By now, the accessible chief neurologist feels like a friend. Casually attired, friendly but firmly professional, he discourages her black-skies forecast. Yesterday, he gleaned encouraging news as he studied Diane’s charts on a large computer screen.
“You are just as strong as you were last month,” he told his patient who is positive she is in irreversible decline.
In our new world of health measured by practically invisible fractional degrees, No Change is cause for cheer.
In this setting, when you go to work, you are permanently in a hunkered down position. You must be prepared to dash home at any hour.
Confronted five months and 15 days ago with a frightening diagnosis of amyotrophic lateral sclerosis – that has no known cure — we have been doing what desperate people do when confronted by flood conditions. Emotionally, we have been stacking sandbags as high and fast as we can.
Our immediate and our 24-hour objective is not (likely) to make Diane better but to somehow slow the pace.
We hope that each day gives birth to a creative new idea we can try.
