Anna Donald: How to behave with chronic, serious disease?

Anna Donald Latest dilemma: how to behave with chronic, serious disease? I’m finding it difficult to know how to present myself. I don’t feel like an invalid, whatever that means these days. Yet I’m too tired and preoccupied to participate in the world in a normal, here-and-now way.

Unpredictable, treatment-induced fatigue means I can’t reliably attend social events. I dread small talk. The inevitable “What do you do?” “I’m not working, because I’ve got cancer.” “Oh, you’ll be fine.” “Um, no, actually; I might not be. It’s quite advanced. Miracles happen, though” “Oh.” Person exits right to stiff drink. (The other version of this conversation concerns my now-permanent baldness: “But of course your hair will come back.” “Actually no.” “Oh.” Exit right. Etc.)

I don’t blame people for coming to an abrupt halt in the conversation: what are they supposed to say? Before I got ill, I was exactly the same. Who wants to talk about the precarious nature of life and death when you could be networking? Social events aren’t designed to hold these kinds of conversations.

Their purpose is to enable social transactions in historic time, not sacred time. Banal, but useful, when 99% of your conscious life lies in historic time. But where do you find ordinary settings, in addition to churches and synagogues and mosques and temples, where you can engage with others in, or at least regarding, sacred time? And the interaction between the historic and the sacred? And not look like a freak. After dinner with friends last week, my husband gently asked whether perhaps the drugs might be having a disinhibiting effect.

Oh dear. I guess things were different in my grandmother’s day, when people, rich and poor, young and old, dropped unpredictably like flies: from childbirth, from war, from TB, from everyday sources of infection like pruning roses.

I wonder how people managed socially, when virtually no family would have been unaffected by death. Was its constant presence kept in check by ritual and religion? Did people sublimate it into customs and physical objects? Did people talk about it beyond that? If yes, in what form? I suppose they used sacred texts designed for this purpose. Freud and Jung hadn’t yet supplied alternative narratives to reduce human experience to the material (through the mechanism of biological sex) or transcended it to the sacred, through collective archetypes and self-actualisation. London analysts I await your correction!

Now, it feels as if on the one hand, Western society is quite good at managing people facing chronic illness and death. We have sophisticated therapies; social work programmes, and many other kinds of supports. Yet on the other hand, we have so rejected religion that we seem to have diminished our understanding of the sacred to the extent that people no longer know how to ‘be’ with it.

And therefore how to engage with someone for whom, consciously or unconsciously, it is a big part of their life, either acutely (eg after separation or death) or chronically. How to talk about experience that is much better explained in terms of sacred and eternal rather than historic time.

Ergo the dinner party problem. Of course I can still rabbit on about Australia’s rising dollar and the effect of rising oil prices and America’s credit crunch (which are interesting and important – I was never any good at talking about kittens). But it’s not my focus any more; I’m too busy studying the biological (current reading: Dr Folkman’s War – thank you Dr Richmond for the recommendation) and the historic and the sacred and how the two intersect. Which are of little interest to most people.

You don’t wade about in shadows until you have to.

I realise that age is a problem: I’m in the wrong cohort to be immersed in these things. Maybe I should hang out in nursing homes. Can I wear purple yet? My husband is probably right. Those steroids have a lot to answer for.

Blog 9: Anna Donald (15 June 2008)