OPINION
DOCTORS ' Lounge
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YOU’ RE YOU – ' Til You’ re Not
Mary G. Barry, MD Louisville Medicine Editor editor @ glms. org
Professor Kate Bowler of Duke Divinity School was diagnosed with colon cancer at 35. She lives on, Stage IV for years now, in what she hopes will be a very long“ durable remission.” Every three months, they CT her and she thinks, maybe another 3 months, maybe not.
In the New York Times of Jan 26, she wrote movingly about her constant experience that almost no one knows how to talk to her anymore. Someone at a loud party even yelled at her,“ I guess you’ re not dying!”
This prompted her to sort people’ s reactions to her standing there, alive( but then again, maybe dying) into several categories. There are those who always know someone else who had it worse in life, and insist on explaining why. There are those who go all Pearly Gates on her and imply, no biggie,‘ cause God’ s up there waiting. The atheists go the other way, telling her the universe cares not. Then there are people who seize on the whole thing as a life lesson, which she finds patronizing, to say the least. I quote:“ Sometimes I want every know-it-all to send
26 LOUISVILLE MEDICINE me a note when they face the grisly specter of death, and I’ ll send them a poster of a koala that says,‘ Hang in there.’”
Finally, there are the problem solvers who meddle by insisting on some new things she should think, or eat or do. She is“ worn out by the tyranny of prescriptive joy.”
You don’ t have to be dying to experience this dislocation of speech and self. Just being really old or disabled will do it. The younger ones don’ t see you, really, they see“ Old Lady” or“ Decrepit Gentleman.” They may have little interest in finding out about you, your opinions or your snide remarks. Conversationally, they go into platitude mode almost immediately. But if you add old to dying, or even sick, then you really suffer the slings and arrows of outrageous statements. They make assumptions about what you need and whether you can chew and whether you have lost it already, never imagining that you got up at 0500 and read three newspapers before they hauled out of bed. In the hospital, I always try to enforce the use of professional titles such as Ms. or Mr. I always point out in speech and writing that so-and-so in Bed 3 is a retired federal judge, or formerly taught Latin, or fixed every known machine at Ford, or is one of the people they should thank for having safely delivered thousands of brand new Louisvillians, lots of them breech.
If you are the person dying, or really sick, what would you like people to do and say? Dr. Bowler says that having one’ s illness acknowledged is a comfort, if done simply and directly, along the lines of,“ You’ ve had a rough time.” But don’ t say you’ re sorry, which requires an automatic reassurance back. That puts her on the spot. She says do not ask anything of her, but“ make a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.”
After that, she says, comes love. Those you love reflect it back, so that you still feel like your real self. They still see you. They still know you. They still love you.
Dr. Kevin Curran first taught me this lesson when I was a senior medical student following him around. He would sit