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This is a sad story of a married couple laid low by disease.
Bill, a former Air Force veteran, came down with (proper term?) Parkinson's. (From what Hannah says, it took up residence 20 years
ago but accelerated during the last five years.) The affliction has deleted his ability to command his body. He can walk, and Pavel, his nurse (this Russian man
about whom I know very little), takes him out each day, weather permitting. But he drools (he cannot time his swallowing with his saliva build-up, something we
"normals" take for-granted), is incontinent, and cannot speak at a normal conversational speed. (When he does speak, he can be vocally clear, but he can't
project — I've been at the house when Hannah has had people over, and the conversation is going in multiple directions, and all he can do is try to follow along since
to participate would mean for everyone to stop and wait while he forced out his words.) I don't know what has been done for him medically — there is so much
research going on these days about conditions like this, I've wondered if there is some experimental protocol in which he could be involved. How could it hurt?
His condition has worn Hannah down. I can only imagine the mix of love and hate that must be in her as she is linked to this condition
in her life until the day he dies. (His iteration of the disease is debilitating but apparently not deadly.) She presents a very American bourgeois persona, steeped
in modesty about behavior and language, hanging out the flag on July 4, historically nostalgic (her family name is well-known), principled (from her religious faith) and
believing that principles form character, capitalist champion (she always chides me about being Karl Marx). Her politics are pretty conservative vanilla, not
surprisingly. She is, or wants to be, in a word, genteel.
Hannah's situation is one of those situations in life where reality will not give way to optimism or "goodness" (i.e., why do
bad things happen to good people?) or magical thinking — it is a burden to be carried until Bill dies. (After he dies is another burden but easier — grieving
can be done at one's own speed.) I suppose one can extract positives out of this hard case — to look on the bright side, enjoy the person to whom you pledged
love for as long as you have him around, feel virtuous for continuing take the hard rather than the easier road (e.g., nursing home). But the make-believe takes its toll:
I have often seen Hannah distraught and weepy, resigned, resentful, angry. She has told me that Bill has said to her things that indicate that he knows he's a burden
and that it might be better for all concerned if he weren't around. Of course she can't accept that — but I'd be surprised if the thought hadn't
crossed her mind.
And for him, what's the great prize of staying alive with no possibility of being paroled from his condition? The habit of staying
alive is built strong, but it can be overcome. And, to me at least, it is a humane and compassionate thing to acknowledge that the choice to opt out is a live
option. It honors his integrity and desire for dignity and should not be ruled out of bounds. (An unyielding respect for life that does not allow for humane choices
to leave it is a kind of cruelty, condemning a person to live in order to make a sure a principle is not violated — as if a principle were more important and substantial
than the suffering body of a human being.) Suffering is never ennobling or admirable.
What would I do if I had a similar situation with the Marvelous María Beatriz? I would do the same as Hannah — committed to her
for life, I would be committed to her for her life, for whatever it would take to make her comfortable and well-served. If one were ruthless, there could be other choices
(if one is ruthless, there are always other choices); but if one is "ruth" (or ruthful), then one has pity and compassion and so must make the right choice. If
the situation were reversed, and I were Bill, I'd go for the assisted suicide. Life is not so precious to me that it warrants enduring such suffering and
embarrassment. At that point, my body having failed me, it's time to move on to the next round, whatever it is.
I wrote a play in which a doctor helps people end their lives. His name for what he does: not "assisted suicide" but
"dignicide." The going-out from life should always be a dignicide, as graceful an exit as our frailty allows - chosen, smooth, simple, sans pain and fear. That is what I wish for Bill, and for all of us.
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