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