Monday, June 2, 2008

Cancer, "Positive Thinking," and the War Metaphor

Toy soldier image by Flickr user atomicShed, used under a Creative Commons license.

Ted Kennedy underwent surgery today for a brain tumor. The press coverage of his illness has stressed two major themes so far: He has a particularly bad type of brain tumor, a glioma. And even in the face of his grim prognosis, Senator Kennedy is displaying courage. A fighting spirit.

Yesterday's New York Times finally tackled the obvious collision between these two themes with a wonderfully insightful article by Jan Hoffman. Now, I don't know anything about how Senator Kennedy is handling this. And really, it's not my business. (Of course, I do sincerely wish him well. Nobody should have to face such a tough diagnosis.)

But I do have a very personal stake in how popular culture portrays the "fight" against cancer. Far too often, the media and ordinary people employ metaphors that just violate the experiences I've had with my loved ones who've been stricken by it.** So I'm grateful that the NYT devoted some space to deconstructing them.

First, there's the relentless pressure to "think positive." An AP article posted after successful completion of Kennedy's surgery today quoted him as saying, "I feel like a million bucks. I think I'll do that again tomorrow." Obviously he's being flip about it. I'm genuinely glad for him that he can crack a joke while in recovery; black humor is one of the better coping mechanisms, in my experience. But boy, this sort of media chatter sets the bar high for the rest of us who might come out of surgery groggy, scared, shaking with cold, and - believe it or not - humorless.

If you get a cancer diagnosis, dozens of people will tell you to stay positive. Some of these will be people you barely know. Of course, if your remaining time on this earth turns out to be rather short, it's a wonderful gift if you can find pleasure in it. But it's just not so simple. You don't hear people exhorting hostages to "think positive" while a gun is being held to their heads, do you?

Hoffman's NYT article accurately describes the pressure patients come under to put a positive spin on their illness:
“Whether you’re a celebrity or an ordinary person, it’s obligatory, no matter how badly you’re feeling about it, to display optimism publicly,” said Dr. Barron H. Lerner, the author of “When Illness Goes Public.” [Dr. Lerner is a physician at Columbia who's also an expert on the history of breast cancer.]

That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state. “If Ted Kennedy wanted to stick up his middle finger,” Dr. Lerner added, “that would be the more appropriate finger, but he’s doing what he is supposed to.”

Whether such images inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.
That middle finger would be such a relief! It would take a lot of pressure off patients to act brave for other people's sake. Sure, sometimes it's adaptive and helpful to act brave for your own sake; acting brave can help you feel brave. Sometimes you have to shield your young children from the whole truth, since it doesn't help a preschooler to hear that a parent might die when in fact that parent might live.

The problem arises when the patient feels unable ever to let her guard down - when platitudes take the place of real support and encouragement. Hoffman collected a few of the real prizewinners:
Uneasy well-wishers, steeped in near-superstitious belief about positive mental attitude, can exacerbate anxiety. On and ChemoChick’s “Excuse Me?” sites, lists of tone-deaf remarks include, “If anyone can beat it, it’s you,” “You gotta think positively” and “Just look at Lance,” a reference to Lance Armstrong, the champion cyclist and a cancer survivor.
What the NYT can't say, because it's a respectable publication, but I can, since Kittywampus is not: These platitudes are just bullshit. The superstition, of course, stems from the idea that positive thinking is not just a way to make the most of our remaining days but our best weapon in defeating the disease itself. Having had a birds-eye view of chemo at work, I can assure you that a resolute attitude might get you out of bed in the morning; it is not likely to make the difference between life and death.

The second load of bullshit that Hoffman exposes is what she felicitously calls the "stirring martial language" that we employ in discussing cancer.
Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.
Hoffman then describes a patient who's nearly ten years out from pancreatic cancer. He became angry once treatment was over and realized "Oh my God, I have nothing left to fight with." It's not at all uncommon to become depressed after treatment, and this sense of having run out of "ammunition," as Hoffman puts it, can be one contributor to depression. I've seen exactly this occur in someone near and dear to me. Studies have shown major depression to be common after breast cancer, as has lots of anecdotal evidence. I'm not aware of much research on other cancers but it stands to reason that breast cancer would not be unique in this respect.

One reason for post-treatment depression - and for its lack of recognition - is the idea that you should just get back to normal right away, especially if your disease was caught early and your prognosis is reasonably good. Everyone from employers to family members want this and expect it. (I'm sure that as a family member, I've had moments where I've let this desire show, too, as much as I've tried not to expect the "new normal" to look like the "old normal.") It's not that simple, of course. Even with a "good prognosis" you're still waiting for the ax to fall. And you're constantly reminded of this by the fact that your body is not the same anymore; maybe you've lost your hair, maybe your energy is permanently depleted, maybe you've lost a part of yourself to surgery.

Another contributor to post-treatment depression is personality and temperament. Those of us who are biased toward doing something - anything - will inevitably feel some let-down when there's nothing left to be done. And if this is how you're already wired, the ethos of modern Western medicine, which is similarly slanted toward action instead of watchful waiting, does nothing to counteract this tendency.

But surely the metaphors we use feed these post-treatment problems, too. We've been waging a "war against cancer" ever since President Nixon declared it in 1971. Since then, we're lost two real wars (counting the present one as unwinnable). The war metaphor might have provided some reassurance to Americans with a clear memory of sacrifice and triumph in World War II. I don't see it as reassuring at all today, and I don't think that's just due to my own pacifist leanings.

We speak of "survivors" in a well-intentioned attempt to remove the stigma and victimhood from cancer. It's good that we no longer treat the disease as taboo, speaking of it in hushed tones (if at all). But what does it mean when the word "survivor" comes to denote anyone with cancer from the moment of diagnosis up to the moment of death, whether from cancer or other causes? And even if you're lucky enough to die much later of something wholly unrelated, what do you gain from the implicit pressure in "survivor" to put the disease behind you as soon as treatment ends, never mind that the gun is still at your temple?

There are exceptions to the triumphalist military narrative. A recent memoir by Kathlyn Conway, who has struggled through both Hodgkins lymphoma and breast cancer, is refreshingly honest, though often bleak. In Ordinary Life: A Memoir of Illness she describes how her illness was just something she had to get through. It did not transform her. It did not make her a better person, nor did it lead her to deep religious faith. But stories like hers are still the exception that proves the rule.

Finally, it's worth asking what it means to have war metaphors mixed promiscuously and unthinkingly with all this talk about "positive thinking." It's not just that war-talk shapes how we think about cancer; the reverse is likely to be true, too. Isn't it likely that valorizing military language in our cancer discourse helps recast war as brave and noble even in times where it's clear that it's simply a lost cause? Certainly there's a long history of seeing "the enemy" in terms that evoke tumors and metastases. But that would be a whole 'nother post.

** I'm basing my reflections on experiences of several people close to me, including some immediate family members, but they're a composite because I want to respect everyone's privacy.

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