Notes from the dying room

My friend’s wife is dying. She has been headed undeviatingly to this end, to this room of her own at the far end of the neurological ward on the seventh floor, for fifteen years at least, ever since she started to stumble when she was sober. I don’t know if she ever grasped this was her destination: by the time she had the diagnosis, her memory was as wobbly as her ankles. For the last five years or so, she left her wheelchair only to be lifted to bed. She has been in hospital for ten months now.

Her mother has stuck old snapshots on the wall. They curl away from the drawing pins on the pinboard. Her hair came halfway down her back then: a huge bear’s pelt, as vividly red as natural hair can be, that she would wear in a ponytail, as if embarrassed by its exuberance. She always wore dark-rimmed, heavy spectacles which failed completely to make her look severe. In one family group her expression is eager, anxious, with the sort of smile that looks as if she’s breathing through her mouth. That one, he says later, was taken when she was already ill: it shows in her face. Look at this one instead: and there she is as I first met her with that powerful smile, like a cold gust over the downs, her face already averted from us.

The ward is so long that by the time you reach the end of the corridor where she is dying, you are already accustomed to the sweetish smell of disinfectant, sharpened with urine, that greets visitors at the end. When we first approached her room there was a terrible noise of malfunction, not at all human, like the groaning of machinery. But it was her wheezing, trying to cough. She has the reflex, but the muscles are weak. He rubbed her chest, and gentled her, encouraging: “That’s good, mate. A cough will make you feel better.”

When I last saw her, in the observation ward next door in Spring. she was completely immobile, vegetal, in her wheelchair. Now, when she lies in bed there are fragments of sudden movement, none of which seem to be connected to anything. It is like watching an ocean liner go down, as the water floods the different switchboxes: lights go on and off in the ballroom; in the cargo hold a crane rattles across the ceiling, chains swinging. The master’s wheel suddenly twirls decisively. But the master and all the crew fled long and long ago.

In the last years one of the carers used to sing for her, and she would finish little snatches of a tune long after she had lost the power of speech.

When her eyes were open, they darted and flicked around the room like a doll’s eyes when its head is moved. When she slept, her little fists would clench under her chin. Sometimes, when her face went slack, her eyes skated round, and deep wheezing groans shook her upper body, she looked, appallingly, in the grip of pleasure.

“I feel that she has come down to a core”, my friend said. He was haggard, unshaven, half manic with lack of sleep. “The illness has whittled away everything from her, and now there is only the core of her personality. I find it deeply lovable.” I thought of the Velveteeen Rabbit, a children’s story about a stuffed animal that comes alive because it is loved. Doug Watt uses it in his talks about consciousness. But this was the Veleveteen Rabbit in reverse. All the love in the world hadn’t kept her conscious; all the love in the world couldn’t keep her neurones wrapped in myelin. Once upon a time, she must have played with her own furry animals, rubbed at their plush and loved them until they were almost alive. Now they are more alive than she is.

We sat together, talking, for four hours by her bedside; when I left to sleep, her husband stayed. He has slept beside her bed, in snatches, for most of the last fortnight. Sometimes she punches out with her hands and snaps the oxygen mask off her face. Then she drowns. He listens, even asleep, for the changed sound of the mask, and rescues her. By eight in the morning, when we met again, he had had about three hours sleep. A new doctor came round: they’re almost always new; and it seemed to me that the woman junior with him was trying not to cry.

A fortnight ago, they stopped the nourishment, deliberately. Tubes take away the urine and the phlegm. Tubes bring in water and heroin. This is modern medical care at its best, and it is very terrible. I really don’t know how anyone can stand it. They want her to die, and, by withdrawing nourishment, they have ensured she will. I don’t dispute the decision. There really is no hope that she will ever get better. But if they’re prepared to kill her, why must it take so long? Why can’t they treat a chest infection with an overdose of heroin? Officially, her life is not worth living. Why, then, must it be so dreadfully prolonged? I don’t know if a doctor could really answer that. If any honestly can, please write to me.

The only answer that occurs to me is that this terrible, hard case is the price that we pay for respecting other lives. I don’t know that the dying woman ever expressed a wish for euthanasia. If she had ever wanted to die, she could have done so long ago. So I suppose this calvary is what we have to go through if we are to maintain the principle that no doctor should shorten anyone’s life against their will.

“Goodbye Joan”. I said, when it was time to return to work outside the hospital, so very much less exhausting than the waiting by her bedside. “Goodbye. I love you.” Die quickly, I added, not aloud. Die quickly, please.

I don’t normally crosspost but I can’t easily write about anything else at the moment. This was the Wormseye column from this week’s Guardian, which is almost a contemp note, dressed up with a little social comment in the penultimate paragraph to make it look like journalism. I really don’t have time to do very much more with it — went straight from the hospital to hotel to Redmond O’Hanlon and got fluthering, disfocussed, walking-under-water drunk. Now I need to write him up, get my hair cut, record a piece for Newsnight on gay bishops, fix up a Radio Four programme I’m supposed to make in December and go into town to meet Dan Dennett. For the first time since I became a freelance, I have work solidly commissioned for three months ahead. And Julian, my clever, witty, talented friend — anyone who’d known us at school would have thought that he was the one who could write — will just about now be waking on a mattress on the hospital floor, beside his velveteen rabbit.

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1 Response to Notes from the dying room

  1. LauraJMixon says:

    I doubt this will provide comfort, but I grieve for your loss, and your friend’s sad, slow death. Thank you for sharing this painful and difficult experience, and if it helps at all, know that you’re not alone in your sorrow.


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