
We’re terrified. We don’t say much about it, but we’re terrified. Terrified of what is to come, however inevitable it may be. Terrified of mourning, which we would like to start today, in order not to have to stay in this twilight zone between life and death. It is neither fish nor fowl, day nor night, death nor life. The disease is kicking her out of time and booting us out of language. Words seem to me a kind of breakfast cereal at the moment: undoubtedly healthy, but rather tasteless.

Another Christmas Eve, with and without her. Another Christmas Eve, with grandchildren who can’t understand why their granny is so sad and acts so strangely. I bend down to her, in her wheelchair, where she is sitting calmly, with a glass of alcohol-free bubbly in her hand and a bowl of nibbles. The edge of the table must more or less mark the boundary between the space, the narrow space around her, where the world is still familiar and reassuring, and the world outside, which confuses her and frightens her.
We do our best to have her at table with us, but the outside world that frightens her, us that is, is obviously coming too close. She wants to get up and walk away.
We roll her back to her corner of the room, some distance away, where she calms down. At ten o’clock Father takes her to bed.
We say nothing about it for the rest of the evening, but everyone thinks what I’m thinking: for the first time in thirty or forty years midnight strikes and Christmas arrives without her being there.

I don’t want to see her wasting away (and somehow I do, somehow I want to confront the proof of her disappearance). I don’t want to see her all skin and bone twitching and trembling in her final bed (and I do want to see it), I don’t want to have to think: this body that is shot through with attacks and spasms is no longer my mother (I’m prepared to think it if I have to). And I don’t want to have to think too often: this trembling skeleton, this wreck, is still my mother (and I’m prepared to do that too). Why can’t I say: she’s no longer with us, without feeling a stab of pain in my ribcage? Why can’t I say either: there is still something of her in her, without feeling pain too? And apart from that, if we decide that it’s worthwhile to go on treating her for all kinds of things, for whom is it worthwhile? And if we were to decide that it’s gradually become enough, for whom are we deciding that: for her or for us?

There are moments when I just chatter and chatter and chatter. I’ve never been a babbler and will never be one, and yet on some days I just chatter and chatter and chatter.
I chatter till I burst, chatter till I’m blue in the face and interrupt other people. I just rattle and gabble on, spew out language, teeth chattering, with a mouth full of dry oats. Where can I come ashore? And if I’m not chattering, I’m crying.
Last week my brothers-in-law brought our parents’ bed downstairs. It seems trivial, but it’s another of those apparently insignificant steps that mean the umpteenth concession to the disease. It will do him good, he’ll no longer have to sleep with one eye open and jump up the moment she wakes in the middle of the night and stumbles towards the landing.
And yet everything is now empty upstairs. The house is growing prematurely old, like her.

Together at the window again, the two of us. He has popped out to the baker’s, the post office or the chemist’s.
Where is he, where is he now, you know, him, him, him…
Dad.
Yes, Dad.
Where is he, has he gone, where’s he got to?
She’s crying.
You mustn’t be afraid. He’ll be right back. Don’t be afraid.
With her fingertips she fiddles with the hem of my shirt.
I’mafraidI’mafraid, she whispers.
At the same time I hear something dripping.
Between her feet the carpet darkens with her pee.
She hasn’t noticed a thing.
I bend down, dry the carpet with a cloth, and wonder:
Does he always carry extra panties with him?
Did he also bend down, forty years ago, when her waters broke?

She didn’t like babies, she liked being pregnant. One evening, when she was heavily pregnant with my youngest brother, she pulled her blouse up and stood in the light of the reading lamp looking at her belly. It seemed as big as the moon, that belly of hers, and she embraced it with both hands, blissfully. I never saw her cherish anything or anyone like that belly. Cherishing was something my father did, the man whom she bore children.

The whole family had gone to the Ardennes for the weekend (all my brothers and sisters and other halves and children, nineteen of us in all). A few days constantly around her showed us how far the illness has already progressed.
When we left on Sunday and wanted to say our goodbyes, she walked past me in order to take a red child’s bike that was lying on the lawn to the shed. Leave her, said Lieven. But as I saw her disappearing across the lawn holding that bike a chasm of unattainability opened up. I was shattered by her isolation, because she herself is not aware of it.

It’s good he’s there, slightly at a distance from the emotions that the illness evokes in my father, and in my brothers and sisters and me.
That he’s there, as it were on the bank, while we navigate a course round the cliffs in open water.
That he’s there to make soup for, mash potatoes. Things become very concrete, like for example chopping a chicken into pieces to make a meal for us.
Having a good cry now and then is also part of it, of course, but also immersing myself in the day’s routine. The fact that he has to get up for work, that he’s ravenous when he gets home.
We’ve known each other since we were children, basically, and so as old fogeys we’d better make the best of it.
Sometimes I worry about later. Who will go first, who will have to bear the dull misery of being left behind? And the raging fear.
He will tough it out, I think. Draw in his neck, head thrust forward, and charge on. He is more inured to the hard aspects of life because life has been a lot tougher for him. I, I’m a pampered thoroughbred in that respect. I haven’t been through anything.
There’s no point in going on about it.
I’m going to make courgette soup tonight, with a handful of coriander.
He likes strong flavours.

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