Denial

A friend recently gave me an audio version of the book 'The Boys are Back in Town' (the basis for the film I commented on a while back), read by the author. One of the aspects omitted from the film was his wife's response of almost complete denial to the prognosis that her oncologist gave. She instead concentrated on positive thinking ('I'm going to beat this') and healthy eating. Even when she was quite close to the end, when the cancerous growths were actually protruding through her side, she was still talking about getting better. The author, Simon Carr, commented that the worst thing about dying was the fear and denial that accompanied it.

I was prompted to think about the deeper motivations for denial in many circumstances. I can see three broad kinds of denial, which overlap in places. The first category is what I'd call emotional denial. The facts are clear enough, but the event is so contrary to our expectations that we don't feel it could be true and we don't want it to be true. This particularly seems to happen when events overtake us unexpectedly, so that our emotions are still catching up. It's a common response at first diagnosis especially if you don't have any symptoms. Jen did have symptoms (a pain in her left arm), which is usually a bad sign. But in the first day it seemed unreal. How could Jen go from decades of life expectancy to years in the blink of an eye? How could we have just lost most of our future? We lay in bed that night wondering irrationally whether the specialist would ring the next day to confess that he'd made a mistake. By the next day and the next meeting with the surgeon, our emotions had caught up, but this continued to happen with each piece of jarring and unexpected news, as Jen's prospects faded rapidly from years to months and then eventually weeks.

The second kind of denial is what I'd call diagnostic denial. Sometimes when out bushwalking, I've missed a turn-off and taken the wrong path. As I proceed, I find that I try to squeeze any new observations into my current hypothesis: the direction of the track seems a bit wrong, but maybe it swings back further on; that unexpected path might be omitted from the map. Eventually I come across an incontrovertible piece of evidence, such as a signpost, and I recognise my mistake. The characteristic here is that the correct explanation, once I see it, is immediately convincing because it explains all the observations, whereas my wrong hypothesis was straining to accommodate the facts. Something similar can happen in failing relationships: the signs of the other person's defection are interpreted in another way, right up until the moment they leave. Of course this overlaps with emotional denial -- it's natural not to want it to be so.

Looking back in my diary to June 2009, I see that same pattern. Just as she was recovering from radiotherapy burns, Jen started to experience some abdominal pains. Since she was taking a fair bit of codeine in her pain relief medication, we wondered whether it was a side-effect, for codeine can cause intestinal spasms. The doctor who saw Jen took a similar view at first, and even diagnosed swine flu. Just two months out from the end of second-line chemo (when there was nothing visible on the PET scan), it didn't seem possible that Jen's body could already be overwhelmed by secondaries. However a CT scan at the start of July delivered news of multiple liver secondaries again, confirmed by another PET scan.

In what was Jen's last week we had a similar experience. She was on heavy doses of painkillers, was eating little and sleeping a lot. She started to fade in and out, sometimes drifting off mid-sentence. Again it was tempting to ascribe this symptom to the side effects of her cocktail of drugs (including oral chemo drugs, steroids, anti-nausea drugs, anti-constipation drugs etc). Jen's colour wasn't good, and both of us noticed that her skin had a yellowish tinge, but somehow we didn't want to talk about it. Again we just weren't prepared for Jen's rapid decline (and we were in southern NSW, far away from our regular doctor and specialist). The symptoms of advanced liver failure (and subsequent kidney failure) were there to see, but we couldn't put the picture together correctly. We were both deeply worried, but lacked information about the likely symptoms of liver failure (we were also without easy internet access, which would have helped me get a better perspective). Even on July 20th when Jen lapsed into deep unconsciousness for the last time, I was hoping against hope that her symptoms had another explanation. I could have let her die at home, but instead hauled her off to the hospital where they took some time to come to the obvious conclusion.

These first two types of denial are essentially temporary. Our emotions would catch up with the facts. The correct diagnosis would snap us back to seeing the real explanation of the symptoms. The third category of denial is stubborn denial. Here the facts that many others take as overwhelming proof are rejected because they conflict with some deeply held prior belief. Holocaust denial has a special and terrible place here. Apart from ingrained anti-semitism, one of the few motivations that makes sense to me here (without for a moment accepting it) is the difficulty of believing that human beings could be so extremely and systematically evil. I've been rereading the books of Primo Levi, a survivor of Auschwitz who returned with a burning desire to bear witness to the horror. Yet much later in life he commented that when he'd long returned to the normal world, he would start to wonder whether those terrible memories really happened, until he looked at the number inked on his arm (174517).

One of the classic strategies of stubborn denial is the conspiracy theory. One can see this in relation to the moon landing, or the assassination of JFK or 9/11 (or in Australia, the Port Arthur massacre). It's a desperate way to explain away the fact that so many witnesses agree. The other strategy is to change the rules of evidence. This turns up strongly in Holocaust denial (and in small way in Keith Windshuttle's attack on Aboriginal history), where the methodology is to set a highly restrictive criterion for the evidence that will accepted, such that most of the relevant accounts are ruled out. In creationism and opposition to global warming, it turns up as a strategy of cherry picking small details and claiming inconsistency, without every really engaging with the bulk of scientific evidence.

Simon Carr's wife went for stubborn denial. With cancer, this often accompanies the 'think positive' indoctrination - if you for a moment admit the medical facts, or take the advice of the specialist, then you are not being positive, you are giving in to the cancer, you are making yourself ill and you are letting down the human race. You would also be helping other people come to terms with death and dying, instead of perpetuating the myth that we can overcome cancer with willpower.

I don't think we were ever attracted by stubborn denial. With friends and family, we tried to make it clear that there wasn't much hope of recovery, and that people who wanted to do something with Jen should do it soon. We could have been blunter, but we didn't want to say something to others that we weren't prepared to say to the boys. Some friends took the message to heart and came to visit while Jen still had the energy to appreciate them. But from some quarters there was a stubborn refusal to accept that Jen was dying - there would always be some new alternative medicine or some experimental drug that would be suggested as providing hope.

The sad and difficult part of that denial, either from the sufferer or their friends, is that it robs people of the chance to face death squarely, and to have farewell conversations with those they love. I am so thankful that Jen and I could accept from the start that her time might be short, and we were able to have many precious words together, and even through tears to talk about my future without Jen. With the boys, they knew about her cancer from the very beginning, but we held off saying definitely that Jen would die soon until we were too close to the end, and that still seems to me a mistake (though the reasons were complex). But with those friends or family who didn't want to hear the cold truth, Jen missed out on time to say goodbye in the way that she wanted.