“At the end of life, the vocabulary of combat is inappropriate and indecent”

How far to treat? Until the end. For suffering is evil – physical and moral, psychic and bodily. It is evil because it has no meaning, no purpose. Suffering refers only to itself, or rather does not refer to anything. It is massive and without grip. It deprives me of my words, of my thoughts even, of this most often unsuspected and carefree lightness, which makes health.

It forbids curiosity, so as to focus interest only on itself, on itself. When one suffers, everything – body, soul and spirit – is occupied with suffering. There is no more space for the accessory, the gratuitous. Everything is serious, heavy and dense, as if without escape. We do not have the luxury of being superficial when we are suffering. But we don’t have access to depth either: the suffering is both superficial and heavy.

Lexicon of wrestling

What doesn’t kill doesn’t make you stronger, but damages and hurts. This combat vocabulary is inappropriate as well as indecent. We don’t fight pain, we endure it. There is neither victory nor defeat, there is only the unjust and unjustified reality of suffering. Any other conception forbids discouragement, makes it culpable by making suffering a failure, a failure. “We have to fight”: this imperative addressed to the patient revolts me. Because illness is not a battle. If I don’t survive, does that mean that I didn’t fight hard enough, that I failed, weakened?

This lexicon of struggle is no doubt an attempt to give meaning to what has none, to translate into terms of action what one can only endure. It is so unbearable for us not to find meaning in what is happening to us. And yet, suffering is absurd: it has neither cause nor reason – except biological. No, we don’t get our cancer. We are not responsible for it. All illness is an accident, undeserved, stubborn. I’m not saying that morale or mental doesn’t count; I simply refuse this vision which requires that we positive everything, that we make it profitable according to two columns, losses and benefits, with a permanent injunction to resilience. The negative exists, and one of its names is suffering.

Suffering has no function

But, in wanting everything to be positive, we have come to no longer know what to do with the negative: either we water it down, transforming it into an almost good, or we make it taboo, giving it the rank of undesirable par excellence, that the we can neither see nor name. This is what happened to us with suffering. As Susan Sontag pointed out, “our ideas about cancer and the metaphors we have slapped on it serve too much to convey the vast inadequacies of our culture, our superficial attitudes toward death.”

I am not trying to attribute any function to suffering. But if she’s not me, I still have to manage to make her mine, to insert her into my life, so that she doesn’t settle there by herself as an invader, a predator. I need to be able to reach out to whoever I continue to be, beyond suffering and despite it. Because I remain me. I remain all that I was, all that I could be. I remain my refusals and my regrets, the courage I have not to reduce my existence to what is, but to combine it with all the conditionals and all the anger to come.

Helping to die, is it care?

I believe that is freedom – which others may call dignity. It remains, even when suffering seems to speak louder. Even when it seems to rob us of those we love. Here too, it is up to us to hold the thread, all this mesh that constitutes the person we have known, so as not to abandon to suffering this mystery that makes us who we are. It is to honor this astonishing singularity of beings that we must attach ourselves.

I remember unforeseen moments, in the midst of suffering – that of those suffering from the disease and that of loved ones – when we suddenly feel a desire to tell our stories again, to talk about the past. Not exactly from the past, but from what makes the incomparable originality of who we are and who we have been together. Suffering does not totally manage to vandalize this life of its own and shared. Something of me, of us, remains intact, inviolable, and therefore to be revered.

It is therefore the care that makes sense, not the suffering. It must be radical, and only end with the end. The question we have to ask ourselves is then this: can healing include helping to die? Is it a question of “dying with dignity” or of being cared for with dignity, which would imply giving palliative care the means to be truly dispensed? To respect those who suffer, by not asking them for either combat or wisdom, is also to respect the care right to the end.

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