Tuesday, May 05, 2015

that river in Egypt

A link, on Twitter, from Neuroskeptic brought me to this interesting yet painful article about "the power of denial" in handling glioblastoma multiforme (GBM), the most common and most aggressive form of brain cancer, which killed my mother in January of 2010 after a nine-month struggle, post-diagnosis.

My response to that article, which I left in the comments, was this:

When my mother was diagnosed with GBM, the tumor was already of such a size that debulking surgery was immediately necessary. The surgery went well, resecting perhaps 80-90% of the initial mass, but most of Mom's frontal lobe went along with it. She never had the opportunity to engage in the complex reasoning put forth in this article. Would that she had. We, her family, did our best to stay positive around her. People prayed for her. A Korean Protestant minister came to our house and made a big show of loudly calling down positive divine energy. For all that, Mom lasted nine months. Maybe two days before she went into a coma that she never resurfaced from, she laughed at one of my jokes. By that point, there were several masses growing robustly inside her skull; she was completely unable to talk, and it came as a surprise that she was still capable of expressing emotion: her face had been mostly neutral for months.

All of this to say that, while I appreciate the power of positive thinking, and can even see how channeling one's thinking in so relentlessly disciplined a way might have potentially curative effects, I nevertheless think hard-nosed realism is a better solution than denial, which is a dangerous road to travel. Two data points—the author's experience and Stephen Jay Gould's—are hardly enough to establish any sort of case that this sort of thinking is reliably helpful. To figure out whether the specific sort of denial described in this article really has any effect on GBM, you'd have to control for a ton of variables. If this type of denial really were a solid solution, oncologists and psychologists would be recommending it as the number-one method for combating GBM. The fact that most medical professionals aren't doing this is evidence of this point of view's lack of power.

Sincere congratulations to the author for having beaten the stats (of which the author is now, apparently, aware). But articles like this are salt in the wounds for the rest of us—the ones accurately described by the very stats being rejected.

During Mom's cancer, I had to deal with too many forms of denial to come away thinking that denial of any sort is healthy. If I ever find myself in a staring contest with the abyss, I know that, far from trying to look away, I'll be staring down its throat until the very end. Because that's the sort of stubbornness I inherited from Mom. To be sure, I don't begrudge the article's author her apparent success in dealing with GBM. More power to her. I simply question the wisdom of sharing a "method" that isn't really a method for most GBM patients.


1 comment:

Charles said...

I can only imagine how painful that must have been for you to read. For all the author's caveats and hedges, when she offers denial as a viable strategy, she is essentially saying that anyone who failed to beat the disease failed because they were not positive enough. I'm sure the author would vehemently deny that she was saying that, but when you boil it down to its essence... yeah, that's what it means.

I think I may have told you about this, but a few years ago a friend of mine died from cancer. It was a shock because we were the same age. We had lost touch, but I made the effort to get back in touch with him when I heard he was dying. We Skyped once, and I was amazed at how positive he was. "I know that at some point I am going to die," he said, "but when I wake up in the morning I tell myself, 'Not today.'" He was bright and cheerful, and he seemed more concerned about the effect his illness was having on me than the effect it was having on him. There was no way he could have been more positive, given his situation. And yet not too long after I spoke with him, he woke up one morning and said, "Not today" for the last time.

I'm a big believer in positive thinking. I do believe that it can work wonders. But when it's your time, it's your time, and no amount of positive thinking is going to change that.