I watched – and ducked in and out of – a tangled, important, often painful dialogue this weekend about cancer and the language we use to describe it.
Last week, after Alex Trebek announced he has stage 4 pancreatic cancer, I wrote a column about attaching the words "battle" and "lose" and "win" to the disease. I interviewed Chicagoan Sheila Quirke, whose 4-year-old daughter and both parents died of cancer.
Quirke advocates for pausing to consider the words we fall back on when someone is diagnosed with cancer.
"People who die from their cancer diagnosis are not weak, have not lost, are not losers," she told me. "People who survive their cancer diagnosis are not winners who beat a mighty foe."
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Her words were intended, especially, for people who write about cancer and cancer patients: journalists, like me.
"Allow cancer patients to define themselves, always," she said. "But stop contributing to a paradigm of war for this specific disease. Never refer to someone as having 'lost their battle' with cancer. Never say someone 'fought hard,' only to 'succumb.' Never suggest a cancer patient has the ability to 'beat' their disease. Writers and journalists have the capacity to shift the narrative and use language that does not rely on this damaging and ill-conceived war trope."
I received more feedback on the column than anything I've written in months. Some readers found the column overbearing and characterized it as an attempt to police the language of people who are either enduring a relentless disease or caring for someone who is.
"Never hearing the words 'fight' or 'battle' won't ease the pain or bring our loved ones back," one reader tweeted. "I don't understand the point of this interview. It just makes peoples' lives more difficult second guessing what just comes natural to us all."
"Here's an idea," tweeted another. "Let Alex use the words he chooses. Stop being the thought and word police. Stop being the world's hall monitor."
Dozens upon dozens of readers emailed me with stories about their own experience with cancer, either as patients or caretakers. I plan to answer each one, but I also want to share a couple of them here. I think they underscore the value of Quirke's guidance.
"I lost my aunt two weeks ago to an inoperable glioblastoma that killed her in under three months. For three months, family members and friends would say, 'don't worry she's going to fight this,' or 'don't worry God has a plan.' I wasn't really able to ever pinpoint why these phrases never made me feel any better," one woman wrote. "I didn't realize I needed someone to put into words that this wasn't her fault."
Wrote another: "My son is in treatment for a very aggressive form of cancer. We lost a good friend and mentor last year, and have another friend in remission after two rounds of chemo. ... If the worst happens, it won't be because my son didn't fight."
"I as a Stage 4 metastatic breast cancer patient get livid every time I hear the words, 'you're a warrior, you're a fighter, you will win this, you can do this. If anyone can do this it is you,' " one woman wrote. "No. I won't win this. What I want to hear, need to hear, is I am praying for you. Would you like to go for coffee. How can I help you during this time. This sucks. I am sorry you are having to face this terrible, awful disease."
Quirke's words, and my decision to write them into a column, were intended as an invitation to pause and consider why we fall back on commonly deployed words. It was an invitation to pause and consider whether those words accomplish what we want them to or whether, on occasion, they accomplish the opposite.
Readers are, of course, as always, free to accept or reject that invitation. No one here is calling for a ban on words. Language is not being policed.
Language does matter, though. An editor once explained to me the importance of using people-first language in my writing. "People who are homeless," rather than "homeless people." Does it solve homelessness? No. Does changing the frame around a problem eliminate that problem? No.
But I believe it's worth searching for words that fully honor people's humanity and experience when we're talking about them. Quirke's words are helping me do that. So are your reactions.
"I don't have any problem with saying that my mom lost her battle with cancer," my friend Christina wrote on Facebook. "That doesn't portray her as a 'loser' in my eyes one bit. I think it just reflects what a pain in the a-- cancer is to beat."
"Some who go into battle and don't survive are heroes, so I too don't have a problem with the term 'battling' cancer," my friend Laarni added. "My mom fought as long as she can, tried all the treatments suggested to her to prolong her life, so she can be around for us just one more day. I even said in her eulogy, I am so glad she fought long enough for my 8-year-old son to remember her. She is a hero."
I wonder if the answer, as is so often the case, is to keep talking. And to talk directly to the people most affected by our words.
Are you comfortable with the word battle or does it hit you wrong?
Does this feel like a fight, or is that the wrong word?
Please tell me if I say something that sounds wrong to you. I don't want to compound your grief.
Those aren't easy words to say. But they're honest. That's always a good place to start.
(Contact Heidi Stevens at firstname.lastname@example.org, or on Twitter: @heidistevens13.)