In illness there are no “negative emotions,” only experiences that have to be lived through. . . . The ill person’s suffering should be affirmed, whether or not it can be treated.
-- Arthur W. Frank, At the Will of the Body: Reflections on Illness
It’s hard to watch a person suffer. Are you just going to sit there and watch? says the voice. What earthly use are you?
Well, perhaps I am no earthly use. Which does not mean that I am no use at all. But my use might be unearthly, my portfolio uncanny.
My ministry is, by definition, to those who have given up cure. If there were a cure for this cancer, that congestion of the heart, this massive insult to the brain, that insurrection of the nervous system, then the client would be somewhere else. The person in the bed is going to die with this disease. Can I help them live with it? (That is what palliative care means.)
“You’re not going to die of this,” a doctor once told me, “You’re going to die of something else.” This was his version of good news. This body, any body, my body, your body, is chock full of mortality. We’ve all got things going on in us that sooner or later could kill us but won’t, because another assassin will get there first. “You’re on earth, there’s no cure for that,” says one of Beckett’s clowns, we’re all dying of mortality. But can we live with it? (This is what the care of souls means).
“It’s taking forever,” he says.
By “it” he means his death. He wishes it would hurry up.
“What’s it waiting for? I’m tired.”
It’s a long train of humiliations.
“I want it to be done with.”
We’ve been through this before. He won’t take his life. He once thought he would, and told me that he had acquired the means – but that turned out to be a hoax, a pep-talk to himself.
No one should have to die in pain – that’s one of our mottos, but the remedies aren’t perfect. Each has side-effects that, in the very particular circumstances of one person’s mortal expedition, may be unacceptable. Too often our people must choose between pain and confusion. Some people would rather suffer their pain than let their brains go muddy.
His body has turned malicious. It’s one dirty trick after another. We treated him for tremors, but the medication made him nauseous all the time; withdrawal took weeks, during which he suffered both tremors and nausea.
One of his unacceptable dilemmas has gone out of whack. By night he is incontinent, by day he can’t pee; for two days now he has been in retention. That’s why he’s in the hospital unit today rather than at home.
He has a gift for intimacy. I said to him once that when he dies, God will be very glad to meet him – because he has a tender heart. His close friends visit, and the people who are paid to care for him begin to love him. When he isn’t wishing to die he gets dragged back into life, kicking and screaming, overcome by his talent for attachments.
So he’s not depressed. There is joy in his life, and a wicked sense of humor. But this is not what he presents to me recently. For me he reserves the desolation. I should feel flattered. When I come through the door, the show is over.
“This isn’t a game any more,” he says.
Or maybe it is. A waiting game. And I wait with him. It’s tedious. Tick tock.
“So there’s no joy left in your life.”
“You don’t feel like yourself any more."
“Robert,” I say, “is there something I should be doing?”
“No. This is okay. This helps.”
What is this?
I’m marking time. I’m celebrating his illness. He’s making a song of it, and an audience is required. I’m the audience.
I want to get on stage, of course. I want to play a transformative obligato of my own. I want to change things.
But I’m not invited. It’s his show. He calls the cues.
If I weren’t there, this time would be unmarked. Life is what can’t be rehearsed.
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