Im not​ as fond of David Bowie as most people seem to be. I’m certainly not dancing a reel in the streets. Some good songs, an enviable capacity to shapeshift, but not so much charm, or humility, as some who nevertheless die young, younger, with children and grandchildren to leave. But that more than anything made me tear up during the tribute programmes. What distressed him most about dying, said this icon of narcissism once, was the thought of missing watching his daughter grow up: ‘It just doubles me up in a kind of grief.’ That’s certainly the key that gets the endocrine glands flowing down my cheeks. That’s the unbearable loss. Everything else can be made sense of. The loss of the future children and grandchildren is unbearable, although quite in order, quite in the way of things. It’s as simple as pushing a button, and I’m lost in no man’s land. The insoluble grief. Not that there’s anything to be done about any of it.

Doris died, at home, not long after Peter. She caught an infection, and was left unmedicated as she had wished. We got her a hospital bed and the local palliative care team looked after her. She became increasingly comatose until she stopped breathing one morning and was pronounced dead on 17 November 2013. It was that afternoon that one of the Sufis phoned to assure me that Peter and Doris would always be together. I wasn’t in my most graceful frame of mind. ‘Dear Christ, I hope not!’ I had a picture of Doris gunning it up towards Peter, and each failing ever to get away from the other. Like the Pleiades. Always away from and towards their doom, shrieking, ‘Will you never leave me alone?’ while they fruitlessly fled for the hills, hiding behind a passing cloud (those beautiful cigarette packets in a lovely shade of pink and gentle clouds of smoke) and running for them there hills, saying: ‘Leave me be. Even here? What have I done?’ While a voice boomed: ‘You didn’t make enough effort; no, scratch that, you’ll never get away, you didn’t fight for your freedom when you had it.’ Oh lord, what a terrible vision. Out and then in. Each dying then recovering.

While they were both still in hospital, Chloe and I would meet waiting for the elevator between their separate floors, have a quick grim consultation with each other about the two days of life Peter was expected to have left. ‘Well, what happens happens,’ Doris said when we told her, a phrase we would never have imagined her using. We were taken aback a moment, and then went our trusted ways up and down the lifts, to arrange a ‘final’ goodbye. ‘I’ve never done this before,’ I said nervously, to Chloe. A small bark of humanity passed between us. But by the time the hoist for Peter’s eating arrangements was sorted out, the crisis was over and Peter was pronounced living for a day or two more. We, Doris’s staples, Roger, Chloe, Christopher and I, took it in turns to wait outside the ICU, to be called, although we all said we were doing it for Doris not Peter, who had failed to draw any warmth from us. What was his quality of life? The big question from the doctor who made the big decisions. None of us could find a good or even reasonable answer, just looked at each other (having varying qualities of our own lives), but the big doc perhaps interpreted our willingness to be there as quality in his life and ticked the box marked ‘good enough’. So on it went until first Peter, then Doris decided on the quality of their lives and proceeded to get on with them at home. My guess is that Peter decided he’d won by dying first, and Doris that she’d be damned if he was going to get away from her that easily. A gracefully executed ending, even leaving time for Doris’s daughter to arrive for the eulogy and to say that she was pleased that her mother had left her.

But back to me (it’s not all about me, I know, but some of it is). I spent a week or so as a patient before and after Christmas at Addenbrooke’s. One day I had a fever and was speaking in tongues, and Chloe and the Poet thought I was dying, although, as I pointed out, just to announce that one is a cucumber doesn’t count as consent to termination. But I didn’t die because they got the drip feed under my skin and poured their potion of antibiotics in fast enough. I was a bit mad for a day or two. ‘A bit?’ muttered the Poet. ‘A bit mad!’ my sterner daughter exploded. Well more than a bit. I had weird dreams which didn’t go away even when they woke me up. I was in some North African war, trying to save my daughter from being abducted and no one was going to stop me. Or I was trying to get the Poet out of prison for writing unnecessary poetry. Then I’d phone him at around three in the morning to see if they were lying to me. It took about three days to get out of that dream. The Poet put up with it as kindly as anyone woken at three in the morning would.

So I was not compos mentis and had no idea where ‘I’ was. Usually it was prison. Daytimes I was generally OK, though a bit knackered with all my night-time battles. Woke up, had pills, had Weetabix and something like a shower. Then in a clean nightie I was ready to face the day. Not that most people thought that banging away at my computer was much in the way of work, and, let’s face it, I wasn’t knitting socks for our boys at the front. Wherever that was. The lady chaplain came round, but I said she’d do better praying for God himself; he had after all, caused all the trouble. One crap in the world and it was time to clear up the fucking mess he’d made of it. We were at least owed an apology.

Mostly I wrote sitting up in bed, a condition I prefer. Beds were made for everyday living. The nurses were very kind and chucked me under the chin as if I were six. I thought I might stay there, but more and more people came to die – the hospice was full – and anyway apart from the clean sheets, home suited my needs. After seven days I said I was going home.

‘Why?’

‘Because apart from lung cancer and fibrosis I now have a hospital-borne infection which no one knows how to cure. I am going home.’ I have enough knowledge of how institutions work to know that I had just to sound as if I knew what they did and did not have a right to do, and they were not doing it to me.

‘We won’t let you go.’

‘You can’t stop me.’

‘Yes we can.’

Without going into the ins and outs of the law on sectioning, I related, quietly and not at all as if I were about to kill someone, the necessary conditions for sectioning people. No danger to herself or others, to qualified doctors etc, to make me sound like trouble. She backed away and, behold, there was another route to keeping everyone happy. Well, if not happy, at least without dogfood on anyone’s snout. A line was inserted from my upper arm to my heart, into which large daily doses of antibiotic were to be injected while I sat in the kitchen or my bed. So I am home and they have got rid of a potentially annoying patient. Always a simple answer to a dangerous argument, which could have left everyone waiting to fight the good fight.

If only I’d known this when I was at war with the management (aka nurses) all those years ago in the Maudsley. Now, aged 68, I find myself back in the same old discourse, them gently enticing or threatening, or us, like startled chimps, pushed into a cave with a banana as an edible treat. Once we had a handle on the thing it was too late. Now, decades on, I had to learn the old tricks again. Placate but make it clear you know how the rules are enforced and that you know how to enforce them, but you have to remain calm. The worst thing is to put them in a defensive position, because then there is nowhere to go and nothing for them to do but rattle their keys like sabres.

I was back home with my ‘package of care’ and the kind of satisfaction someone feels who has found the crack in the wall where the tiny key fits and lets us out. There were no battles to be won or lost, just medications and pulses. Perhaps not as effective as pills in a hospital, but not tensed or straining against idiot rules designed to make the nursing staff not responsible for anything. I am willing to do anything to keep away from their keys which bring with them the pills that space out time like a clock. I eat Weetabix, have sitting-down showers, let them thread plastic lines to my heart to guggle down huge quantities of antibiotics, all in the name of keeping out of their clutches. ‘Disinhibited’, the Poet calls it. But just get an inch inside my defences and they’ll see what granite I’m made of.

In the meantime, I’m warm, not to say cosy, and my time, such as it is, is my own. But warm and comfortable seems good, at least not horrified with constant thoughts of death. I do think constantly of death, my death, the only one I’ll have. They are closing the ring of wagons as I watch and feel for symptoms. But there are too many to be worried. A pain in my side, high/low blood pressure, tiredness, anything happening in my body and mind could be the cancer, or the fibrosis, or the pneumonia or the fear of some other symptom hiding in the woods pretending to be a tree. So I think I’d better not be afraid, I’ll always be afraid.

But I am scared of dissolution, of casting my particles to the wind, of having nothing to cast my particles to the wind with, of knowing nothing when knowing everything has been the taste every day, little by little, by knowing what little meant compared to a lot, compared to something or nothing. People have always worried me with questions, questions have always worried me with having no answers. That’s what I mean. I don’t know enough, or know nothing. And then I get to the nub of it. What should I know about? When great minds have gone to dust, what could it possibly matter what I know or don’t know? What arrogance to imagine that my minute fossils of knowledge are of any importance. Then again who is going to win the third world war? How will my grandchildren manage in a world that is daily dispersing, without a grandmother who has already dispersed? Or most simply, I’m curious. What will I not know when I’m not a knowing machine? There are too many questions for an ordinary curious mind. How can nothing be nothing? Help me out here, philosophers, there isn’t much time. Or is it really just a dance, a quadrille made from the soup of Alice’s tears. Alice doesn’t have tears. Well, that’s what you know. I’ve done a backstroke in those tears. Want a race?

Im​ very feeble but no longer going to die of pneumonia, apparently. So here I am, thinking and taking pills, wondering whether the fibrosis will kill me first or the tumour. The feeling that my death was waiting on the doorstep with the milk bottles has lessened. It was Xmas, and probably my last, and I’ve been practising my grand grumpitude to ensure that my grandchildren think ‘bah’ as effectively as their irascible grandjen. At this rate I’ll be dying like a dearest grandmama would with a grin from here to here. Swinging from the whirling light that Hitchcock made everyone scream about.

I’ve been given one last chance. A trial pill (probably filled with sugar) I’m to take every day, no fat or anything nice in my diet. The last lot I stopped because they made me sick and miserable, and generally gave me very little quality of life. Qualia: do you love it or hate it? These new ones have bad side effects after which there is ‘nothing we can do for you’, said the nice doctor at Papworth. The paper you get with the pills said an agonising pain in the upper abdomen was possible. I was having goose for Christmas, so I’d decided not to take them until after Boxing Day. And then I got sick. About half a dozen people have been diagnosed or died of cancer the last few weeks, so cancer has a bit of a domestic ring about it. (No, Clive James is still with us.)

Incidentally, anyone wanting to send me a late Xmas sorry-you’re-dying prezzie, I want silk or organic cashmere something, so I can waft my way through the box sets and die happy at having seen the last episode of The Bridge in cosy things that I can stroke – there is the Poet but it’s not the same as a dead goat. Top of my list (after the sumptuous silk) is that our neighbours not start building work till I’m gone. Or at least stop them playing Radio 1.

I don’t think I want a funeral. Very last year. But it can take up some usefully distracting argumentation. Always fancied ‘Smoke Gets in Your Eyes’ and for the Poet to sing a properly political song – maybe, like at my old friend Joan’s funeral, ‘The Ballad of Joe Hill’, and that Tallahassee song so perhaps I’ll know what she threw over the bloody bridge. And finally ‘Me and Bobbie McGee’. Also, come to think of it, the Grosse Fuge. OK, that’s it for now.

For several days now I’ve been feeling as if I’m on a holiday, a short one coming to its end. Not an especially good one. Not sorry to be leaving, not sorry to have been here. No particular feeling one way or another. Not living in my place. Not familiar enough. As one might sit on the edge of a chair that is waiting for another occupant to take it over. It’s the strangest of strange feelings. Best travelling clothes, a ticking of a clock that will go on ticking after you leave and after the next occupant too. An especially powerful image that. The clock that clicks as generation after generation passes by. And all along a narcissistic metric that keeps the haphazardest of lives seeming to be afloat on an even keel. It is, of course, the ticking, tocking of this everlasting, or outlasting, clock that keeps everything seeming so orderly, that is, you realise, keeping the time.

About time too, someone says in the distance, and you realise that it is about time. Catch a handful of salted peanuts, then pick up your cheap suitcase for the forward journey. There must have been hope at the start, thoughts of something, exciting or eventful, and now it’s time to be going home. Back to the real familiarity that the holiday was taken from. The real break in the everyday, every – what would you call it? So I’m sitting here on the moquette, ankles close together to take the journey home. An adventure the other way.

Well, that is my sense of death and the station platform waiting for the train and its slow delay. It doesn’t matter a jot now, in my actual place. But the overwhelming importance of loss and necessity in the background that keeps what ought to keep always ticking, and also always steady. A steadiness keeping the one thing and the other apart.

You’ve​ done it now. Vanilla on your clean white gloves and shoes. Each way, for some reason no one will explain, the whiteness of gloves and shoes – the shoes painted with a chalky white substance that had to be waited for to dry. One scuff and the story’s told, the mystery is out. But not to me. Why, when it is so unimportant, is the whiteness of the shoes essential? Who could possibly keep these gloves and shoes white, at the dirtiest part of the journey? Why should it matter? Do you want them (who?) to think you have magical properties that keep pure the extremes of the body most likely to pick up dirt from floor and ticket booths? What could it possibly pain anyone to see a scuff mark on the inside of the top left of a shoe front? What a lovely child. So clean, so nicely kept. What a paragon of a mother that formulaic child must have. How carefully I folded the whites of my clothing when I crossed the road and slipped through the wire fence to the bomb site. Put my carefully folded clothes on the flattest, cleanest stone I could find, so that I could run around, play houses, my knickers’ elastic broken and pulled so I could put some in my mouth and chew elastically on it. Then return home after my mysterious play at housework, as clean as any school day, as any child could achieve. A ritual. Building the walls. Three bricks high, openings for doors and windows. Or perhaps I am lying against myself, only wishing to wrinkle and make dirty the dirtiness of my floppy knickers. (That part was true, I did nibble on my dirty knicker elastic, forever a mystery to my mother. How could a child arrive from a day at school with grubby, broken knicker elastic?) She had no nose for the most pointless of activities. For the delicacies of all delicacies, broken knicker elastic. Perhaps no one did. Or no one apart from me. ‘Eugh, she’s eating broken knicker elastic. That’s well dirty.’ I couldn’t know. It never occurred to me to find out.

With carefully wiped hands I returned to my pile of clothing, put the clothes on in the correct order, as exact as if we were a family with varying places on the OCD chart (we were, of course). My mother looking over every part of me to find the source of the problem. This way, that, don’t leave anything out. Sniffing through my wellworn clothes that would prove definitively I was one of those dirty children she would not have her child playing with.

‘Why can’t I play with them?’

‘Because they’re dirty.’

But they were no more dirty than I was.

They touched things. I imagined some things I could touch, but couldn’t come up with anything I hadn’t touched already. Was there a sneaking place? A hidden place that no one knew about but everyone touched that made them ‘dirty’? I wished I could find the dirty place, so hidden that no one would find it. That only I knew about. And only I thought of to play with. But nothing was so secret, so hidden that one couldn’t see it. Where was it? What did it do? But my mother’s investigations were so carefully done nothing could have been missed. Oh, you pretty things. Go to another place to find what you are looking for. I was my mother’s prettiest thing, but was only told to leave the room occasionally, and then it was so she could swear and curse the day she and I had been born. So the secret, if not the activity, was and remained a mystery to me for a long time.

Illness, as normal people understand it, was virtually prohibited in my flat of two rooms. You got shouted at if you had a temperature. No more or less shouted at than any other affair that meant difficulty for her. When I was 11 she arrived at the boarding school where the combined efforts of the local education authority and social services had sent me. She had a white paper bag, and inside, spoken of in undertones, was a pink plastic box. She’d been to the doctor, she said, and he said it was all right to start now. You can shave yourself, maybe twice a month your lower legs. Just like an ordinary shaver, but smaller. It seemed that I was medically approved to do my legs and under my arms. But I wasn’t ill. It wasn’t a treatment. And this is how life went on. A year or so later I had my first period, known as being ‘unwell’, where mostly you sat on a sofa and took two aspirin every four hours. She would have to slap my face when it first started. The strangest of all the medications. But when it actually happened it seemed as if she needed to be slapped in the face, so appalled and panicked was she. All that, I learned very much later, was part of Jewish tradition. Face-slapping. And keeping ‘clean’, making evil take its place at the back of the schul. Jewish stuff, women’s stuff. Who knew, who cared? What would happen to me if a curl of hair was found in the bathroom? This was all folkloric stuff, but very hard to separate from the mad rituals of my mother, who, as far I know, carried on her own mad fancies with little regard for the cleansing ritual that tried to make clean what the Lord made dirty every month, to say nothing of the Lord and his tabernacles, whatever they turned out to be.

It was my mother’s middle-aged panic acting out in me. I lay on the sofa with an upturned hand over my forehead as I’m sure they were depicted in Little Women, while Marmee took hot, freshly baked rolls to poor families in a basket under a gingham cloth. It was entirely weird and disturbing to try putting these certainties also under the cloth with the white rolls. Unwell, after all, is not ill, nor, as far as I know, did red gingham do much for stomach cramps. The mishmash suddenly made the only sense, mishmash whirled around and pulled together in a kind of Disney dance, which hasn’t been made, but should have been because it’s a much better story than Beauty and the Beast.

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Letters

Vol. 38 No. 5 · 3 March 2016

If Jenny Diski’s lachrymal glands conform to established principles of human anatomy and physiology, they are of the exocrine, not the endocrine, variety (LRB, 4 February).

Lawrence Manion
Glenfield, New York

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