There are those who can reconcile themselves to death and those who can’t. Increasingly, I’ve come to think that it is one of the most important ways the world divides up. Anecdotally, after all those hours I spent in doctors’ outer offices and in hospital lobbies, cafeterias and family rooms, my sense is that the loved ones of desperately ill people divide the same way.

David Rieff
‘Illness as more than metaphor’,
New York Times, 4 December 2005

I went to the Petrea King Quest for Life Centre, that bastion of positive thinking for people facing life-threatening illness, carrying a grim secret. I had discovered that the last-ditch treatment Mum was relying upon to save her might succeed in stopping the spread of cancer in her body, but there was a one in three chance that tumours would still grow in her brain. I hadn’t told her about this, reasoning that perhaps she would be in the larger, luckier category. Anyway, there was nothing she could do with the information, except worry about it. Like me.

After lunch on the first full day of the retreat, the carers met as a group to discuss their particular issues. I thought this was a forum where it might be possible to speak openly about the burden of unwanted information.

‘I find it hard to stay as positive as my mother, when I know things that she doesn’t know,’ I said. ‘Like the fact that only seven per cent of women with her advanced kind of breast cancer live for more than five years. And that thirty per cent of people taking Herceptin end up with brain tumours.’

The woman facilitating our session bristled. I was speaking the language of the enemy: gloomy scientific statistics that sap the will to survive. Quest for Life was firmly on the side of inspirational stories involving alternative therapies and miraculous remissions. The facilitator told me in no uncertain terms not to judge other people’s ‘journeys’ or to think that the law of averages had any applicability to individuals.

‘Magic happens,’ she declared.

David Rieff’s account of feeling impelled to fake cheery optimism as his mother, Susan Sontag, slid inexorably toward her death whilst desperately scrabbling to escape it, makes harrowing reading for those of us unable to take refuge in magical thinking. He details the extreme medical interventions Sontag insisted upon, and the gruesome physical and mental suffering they caused. He engages in self-recrimination about his own behaviour, which he sees as having been dictated by a choice that ‘boiled down to hope or truth’. It is obvious that years later, he is still conflicted by his decision to endorse a struggle that he regarded as futile, and to affirm that recovery was beyond doubt when he knew death was inevitable. As a reviewer of Rieff’s memoir noted, what we have here is the ultimate example of the ‘bad death’, the kind of miserably protracted and painful affair that overwhelms everybody with panic, guilt and bitter regrets. And afterwards, there is the pall of missed opportunities hanging over the living. The chances to interact without falsity, to speak from the heart, to say a meaningful goodbye, have all been lost.

Maxine’s story is the polar opposite of David Rieff’s. Her husband was utterly reconciled to the prospect of death, even when she was still reeling from the news that he had a brain tumour. She wanted to tell people about her family’s experience in order to show that dying doesn’t have to be fearful; it can be a serene and joyous process.


A Hospital Bed at Home Copyright © 2014 by Janene Carey. All Rights Reserved.

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