Battling Disease

The Pixelman CC0 Public Domain

Once again, words matter.

You may have heard the sad news that US Senator John McCain has been diagnosed with cancer. You also may have seen the excellent column by Noah Berlatsky John McCain Isn’t “Fighting” Cancer 

​Berlatsky points out the dangers of the military metaphor for those with cancer. If everyone with cancer must “fight hard” to “battle” against cancer, then what do we think if they die from cancer? They’ve lost the war. We don’t like losers. Maybe they didn’t fight hard enough or long enough. Maybe they just weren’t strong enough.
 
Maybe it was their fault.

So maybe that awful thing wouldn’t happen to us because we’re stronger, we’d fight harder.
 
Oh we wouldn’t say that out loud. We might not even realize we’re thinking that. But words are insidious, as I've written before, especially when they’re metaphors that carry whole worlds with them. Like the metaphor Disease Is War. So we have battles and fighting and weapons in that war. We have winners and losers. They reflect our culture’s ways of viewing the world of disease, and they influence the way we think and experience our worlds. I’ve written about the importance of the words we choose several times now. It keeps coming up because

Words matter

​Berlatsky points out that McCain’s cancer, glioblastoma, is an aggressive one, hard to “defeat.” His father-in-law lived a bit longer than a year after the diagnosis. My own friend with glioblastoma lived just months before he died. My friend was very strong, physically and emotionally, but he died anyway. This is a tough disease. It’s likely to win the war. As Berlatsky says,

​“It’s extremely fortunate that McCain has excellent, government-provided health care. The fact that he does will improve his chances of surviving glioblastoma far more than his bravery or willingness to fight. And if McCain gets very sick very quickly, that’s not a sign that he didn’t fight hard enough.”

​If we see disease as war, then our experience of disease must be aggressive, agonistic, difficult, a battle and a struggle to win/survive. But some people make other choices. Some people choose to experience their disease differently, as difficult as that is in this culture. Some people reject the war metaphor.
 
My friend decided not to do everything possible to “fight” the glioblastoma. He chose to live with it as long as he could. What metaphor can I use for that choice? Instead of “battling” cancer, he accepted it.
 
Another friend with breast cancer and then ovarian cancer did everything she could, but she didn’t “fight” it. She never wanted to see herself in a battle. Not this smiling, kind, and gentle woman, not this Buddhist. As her obituary put it

​“She accepted every new physical limitation on her life as part of a new normal” 

​Life includes suffering as well as joy. Disease happens—to the strongest and the weakest of us. It’s not her fault she died. It not his fault he died. It’s not a question of how hard McCain battles.
 
That’s hard to hear for people experiencing cancer and trying to keep living—people who want to be “survivors” of cancer, and their loved ones who want them to “keep fighting.” Our cultural metaphors and use of words are hard to shake. Berlatsky added into the mix Barbara Ehrenreich’s expose of Americans’ positive thinking, including an insistence that those with cancer stay positive as they fight and battle cancer. 

My favorite commentary on the topic comes from Judy Segal, a scholar of medical rhetoric, in her very readable article on “Breast Cancer Narratives.” She recounts the hostile reaction Ehrenreich and other women with breast cancer get when they expressed negative perspectives about their own breast cancer, with respondents on various media implying that they would be responsible for their own death if they didn’t stay upbeat and keep fighting. Not only do you have to be a soldier in the cancer war; you have to be a happy soldier.

But rejecting the battle metaphor doesn’t mean you don’t get the treatments you want or endure more suffering in an effort to rid yourself of the disease. You don’t have to either “fight harder” or “give in.” That’s the metaphor talking. People with cancer can seek out treatments and change their diet and do everything they’re advised to do to try to get better. My gentle friend did all that. But they don’t have to let their lives become a battleground. They don’t have to become a military soldier if that’s not their approach to living.
 
Words and metaphors are so powerful that it’s hard for us to separate the experience from the metaphor. Lots of people respond to questioning this cultural metaphor with outrage: “You have to fight! This kind of talk encourages people to give up! If you’re not tough you won’t survive. You’re going to kill people if you tell them they don’t have to fight cancer. It IS a battle.”
 
Yes, it seems like a battle because that’s how we’ve talked about it and that’s how we think about it. Yes, pursuing treatments might help someone live longer, if they have health insurance to cover it. Yes, enduring some treatments is very difficult and takes a strong will and determination.
 
But dealing with cancer might allow a more peaceful approach. Take the new metaphor emerging from all the people who are still alive after receiving a cancer diagnosis, even though they haven’t been “cured.” Those people are “living with” cancer. They’re getting treatment, but it’s for the long-term. It’s hard to keep fighting a war for the rest of your life (see the US experience in Afghanistan). It’s not giving in to accept reality and find a way to live with your physical body, whatever state it might be in.
 
That new metaphor might be a way to view cancer of any kind, with any prognosis.
 
John McCain is now living with cancer.
 
Such a metaphor would let us all express our sorrow for his suffering and our good wishes for him, without requiring that he begin struggling and fighting, without returning him to his days in an actual war and his survival experience as a prisoner of war. He need not be a prisoner of this cancer. He need not make his remaining life a battleground.
 
A new metaphor gives us new ways to express our sorrow and good wishes:
 
John McCain is now living with cancer.  May he live well, as long as he lives.
 
May we all live well with whatever our bodies bring us, as long as we live.