[img]2624|right|Diane||no_popup[/img]Dateline San Francisco – After unpacking on our fourth monthly journey to the ALS research clinic, we were on our way to dinner late Sunday afternoon. “I wish we were here for a different reason,” Diane said six months and 11days after being diagnosed with the motor neuron disease amyotrophic lateral sclerosis. “I wish this was a getaway weekend, the kind we used to take.”
Therein lies a maddening riddle of our dual lives.
Diane’s pessimism about living as long as she had planned clashes with my unshakeable optimism that the 13-month experiment we are participating in will qualitatively prolong my wife’s life…until further research brings us a new extension while we await the first-ever cure.
I am not sure Diane concurs, but this was our most promising San Francisco excursion yet.
At 9:45 yesterday morning, our favorite neurologist, Dr. K, uttered the most beautifully etched words we have heard – I have heard – in the last 195 days:
“Your disease is progressing very slowly.”
When you are thirsting and a drop of perspiration wings toward your parched throat, you say “thank you.”
Thank you.
Owning an understated tendency to spasmodically be emotional, I leaped to stand up. I didn’t want Diane to see the tears.
Stoic, almost stolid, as she typically is at Dr. K’s clinic, I saw cause to celebrate. Diane, however, remained calm. One of us needed to maintain decorum.
Since our first visit, during the summer, Diane has separately told Dr. K and each member of his team that as her mobility steadily narrows, her career in medicine will dry up any hour. As positive as she is of her name, she is that certain that the frightening prospect of unavoidable paralysis awaits her one near morning when she awakens.
My No. 1 task every day is to creatively, forcefully discourage such thinking. None of us knows. Only God. Emphatically, not the doctors.
None of us has succeeded, though, in influencing her thinking toward sunnier climes.
The most religious authorities I respect have properly scolded me for not being sufficiently considerate of the unimaginable psychological and physical pain she endures daily. “Until you have been in her position, you may not judge,” yet another friend told me last evening.
I beg her to live. I believe she will. Please God.
