THE SCENT OF WORDS
“In illness words give out their scent…
if at last we grasp the meaning, it is
all richer for having come to us…”
On Being Ill (1930)
“She knows,” her husband cries out as he looks toward me, “only she knows!”
His wife interrupts and tells me what she knows. “He has tumors on his brain and it’s causing him to have fits. He just ain’t thinking straight but he keeps asking for you, sayin,’ “you know-only you know!”
What do you know,” she asks, “that the doctors aren’t telling us?”
“I don’t know what the doctors aren’t telling you or your husband,” I say. “What I do know in my role as medical humanist I’ve learned from patients by documenting what they understand and feel about their illness—in their own words—for the doctor to review.”
I tell her, “One patient immediately comes to mind. When I asked him what he understood about his illness he was he quick to respond: “’Bad news is not heard in complete sentences.’”
“Ain’t that the truth!” she exclaims.
I ask myself, what is the truth? There’s the doctors’ truth and what patients and families understand to be the truth. There is no one truth.
Her husband turns to me and calls out for the second time, “You know, only you know.” This time he closes and opens his right eye punctuating his words with a wink. I don’t know who it was that said, “One eye sees, the other feels.” I do know a wink to be suggestive. It suggests it’s just between you and me.
I move from the foot of his hospital bed to his bedside. The guardrails, which protect him from falling, don’t prevent me from putting my ear close to his lips to keep it just between him and me.
“What do I know?” I ask.
I hear his dry lips parting —it is the sound of human effort. I feel the warmth of his breath on my cheek. In my line of sight is an opened can of Ensure whose straw is flexed and points to me. I breathe in the scent of strawberry as he murmurs,“ I am here by chance, not by choice.”
What do I know about chance I ask myself? Chance lacks forethought. As for choice I imagine that when you learn your life is threatened you have a choice to turn toward this knowledge or away from it. I am of two minds. I imagine myself turning to and fro—from side to side. Yet, in the act of going back and forth, there is a moment when you face mortality head on. It can be a brief but profound realization.
He knows what he says to me is included in my note for his doctor, which I attach with a wire clip to the front of his chart. The doctor will review my note, sign off and it will become part of his medical record.
What was the doctor ’s response to my note?
“He said he’s here by chance?” she cried out. In the next breath she explains the physiological facts: “He’s not fully conscious—it is a side effect of morphine.”
I tell her what comes to my mind are the words of the philosopher Gaston Bachelard who said, “The subconscious is ceaselessly murmuring, and it is by listening to these murmurs that one hears the truth.”
We pause and look at each other with appreciation, recognizing the intersection of medicine and the humanities.
Reading this it occurs to me that you are not only giving a great deal to the people with whom you are working, but they are giving you a great deal. They are inspiring questions. Asking questions to which we do not know the answers yet is one of the most important activities in which we can be engaged. People who are dying seem to be asking the important questions we should be asking while we are living.
Lots to think about here. I agree with everything Sally said, especially about asking ourselves the same questions we hear dying people ask. When it came to death, focusing on truth, chance and choice helped raise my consciousness when I was a caregiver, and it has ultimately made me a better person. The man in your story is accepting his fate I think. Your job as a medical humanist, opens a door and offers a pathway to deeper understanding of truth, chance, and choice. It is our responsibility, those you are helping, to decide if it is our path.
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