Cathy Rentzenbrink, aged eight, pictured with Matty, seven, in 1981. Photo courtesy of Cathy Rentzenbrink
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A fate worse than death: when modern medicine's instinct to save is misplaced

When is it better to die than live?

The Last Act of Love: the Story of My Brother and His Sister
Cathy Rentzenbrink
Picador, 213pp, £14.99

Bookshop shelves are groaning with “tragic life stories” but Cathy Rentzenbrink’s The Last Act of Love is in a different class. It tells the story – simply and elegantly, and written quite without self-pity – of how her brother, Matty, was knocked down by a hit-and-run driver and suffered a severe head injury at the age of 16. After emergency brain surgery he was left in a persistent vegetative state (PVS). In PVS, patients show no sign of awareness or response to the outside world and make no voluntary movements, even though their eyes are open:

I sat next to Matty and looked into his eyes, their awful blankness. There was no sparkle, no sign that anything was going on. I held his hand and told him bright and cheerful lies about France, but I knew there was no longer any point in talking to him. He was gone. I now felt more sure than ever before that it would have been better for him, better for everyone, if he’d died on the night of the accident.

Eventually, after eight years, his family obtained judicial permission to withdraw “clinically assisted nutrition and hydration” – to stop giving him food and drink through a tube inserted into his stomach – and he died.

The book is profoundly moving in its descriptions of the initial shock after Matty’s head injury, the false hope for a good recovery and the mental and emotional distortions and paralysis that come from loving somebody who is neither dead nor really alive. It was an act of great bravery and love to let him die but it felt like murder. “I feel damaged by the fact I wanted his death,” she tells a friend. “It’s really bad for your soul somehow, it goes against what you think you should be like and what you think you should want as a person.”

As is so often the case, the true victims of severe brain damage are the patient’s family. Love can come at a terrible cost. Rentzenbrink’s love for her brother came close to wrecking her own life because of the utterly unnatural situation in which she and her parents found themselves, but it took many years for her to understand this. Towards the end of the book she opens the box containing Matty’s hospital reports and the mementos of his life: 

In all the medical reports . . . in the box of despair there are occasional mentions of me, of my psychological problems, of my state of mind, of how I was finding his condition difficult to come to terms with. Reading this report [from the Royal College of Physicians about PVS], I realised that there was nothing unusual in that, there was nothing unusual about me, there was nothing unusual about my family, except our exposure to a desperately cruel and unusual situation.

It is a great achievement to transform such a terrible, indeed grotesque, story – one of a kind with which, as a neurosurgeon, I am painfully familiar – into something rather beautiful and uplifting. Rentzenbrink’s story is also about the way in which modern medicine does not always have benign results and the difficulty our society has in facing up to death, and to the reality that there are fates worse than death.

Dying from dehydration is quite a slow process and patients in PVS do not lose reflex or involuntary movements. As they slowly die, they can “exhibit signs of phy­siological distress which may give the appearance of suffering even when the patient himself/herself is unaware” (in the words of the Royal College of Physicians), and so the process can be harrowing for those watching it. That the law dictates that death in these circumstances must be achieved in such an unpleasant way – there are many kinder and quicker methods – shows our inability to escape our deep, atavistic fear of death, a fear that so often inflicts great suffering on the dying (and the family).

Patients with PVS (it is estimated that there are 4,000 in the UK) are a product of modern medicine. Perhaps one should call them the by-product, or collateral damage, of hope. Doctors and patients’ families alike have great difficulty in accepting that there is little chance of a good recovery after a catastrophic head injury. As a result, patients with very severe injuries are treated in the acute phase – with surgery, with ventilation, with tracheostomy – and survive, whereas in the past they would die within hours or days of the injury. Once the crisis is past, it is likely that the patient will survive, even if they remain profoundly disabled, either in a “minimally conscious state” or in PVS. The families can be forgiven for finding it hard to accept that the person they love is better off dying, but in the case of the doctors the situation is much more complex.

When somebody suffers a severe head injury he or she usually is sent to a major neurosurgical unit; there are about 34 of these in the UK. Usually he or she will already have been placed on a ventilator (a life-support machine) by paramedics at the site of the accident. This staves off death (or further brain damage) so that an emergency brain scan can be done. This in turn will often show that, with treatment, the patient will probably survive, but in a brain-damaged state, and without it will probably die.

When I was on call for emergencies, often I would be rung at night by my juniors about patients who had suffered such injuries, or strokes. Emergency brain surgery is very simple – it involves drilling holes in the skull and draining out blood – and is well within the competence of most junior doctors. The question of whether to operate to try to save the patient’s life, however, is much more difficult.

Occasionally the family (which often is not available in time) will express a strong preference about what should be done, or the patient might even have left an advance directive (something we all should do), but usually family members will be entirely dependent on the doctors as to how to proceed. I would look at the brain scans over the internet on my computer and then, like Nero at the Games, give a thumbs-up or a thumbs-down. I would have to make some kind of prediction as to what kind of recovery the patient might make. Naturally, I would err on the side of caution and hope and often tell my junior down the phone to operate. But sometimes I felt that the patient was probably better off dying.

These are not easy decisions to take. If I told my juniors to operate I would go back to sleep; if I told them not to operate I would lie awake, worrying that I might be wrong. Furthermore, I was often faced with a long and difficult operating list in the morning and the patients on that list needed me to be rested and alert.

It is always easier to treat than not to treat. When I was a young consultant I would advise surgery in far more cases than I did when I became older and more experienced, having by then occasionally seen the awful long-term consequences of my decisions. I have observed the same process at work among my junior colleagues; it is frequently said that, with age, neurosurgeons become more “conservative”. We can rarely predict the future with certainty but if doctors make their decisions solely on the basis of certainty – if we must treat patients even where there is only a minimal chance of success – we can inadvertently cause great suffering. We must learn to accept, in effect, that it is better occasionally to be wrong and to lose one patient who might have made a good recovery than always to be right: to treat everybody and produce many catastrophically disabled people. The difficulty, of course, lies in knowing where to draw the line. How many good results justify one bad result? And what constitutes a bad result?

This book should be read by everybody who has either personal or professional experience of severe head injury and, indeed, by anybody who is concerned by the way our society has such difficulty in accepting that meaningful life is about more than just a beating heart.

Henry Marsh’s “Do No Harm: Stories of Life, Death and Brain Surgery” won the PEN Ackerley Prize and the South Bank Sky Arts Award for literature. He will appear at the Latitude Festival (16-19 July) in association with the New Statesman and the Wellcome Trust.

This article first appeared in the 26 June 2015 issue of the New Statesman, Bush v Clinton 2

ROBERT RAUSCHENBERG FOUNDATION, NEW YORK
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"Someone was screwing here": the cryptic art of Robert Rauschenberg

Dense with allusion and synecdoche, Rauschenberg's art work reveals an extraordinary “stream of unconsciousness”.

Before he was established, Robert Rauschenberg had the following jobs. He was a neuropsychiatric technician in the US navy at San Diego. (Unsurprisingly, he preferred the patients when they were insane.) He worked for Ballerina Bathing Suits as a packer and at the Atlas Construction Company in Casablanca, where he conducted inventories of stock for $350 a week. As he made his way in the art world, he was a janitor at the Stable Gallery. He did window displays at Bonwit Teller on Sixth Avenue, as well as Tiffany & Co and Reynolds Metals. (When window-dressing in penurious tandem with Jasper Johns, they used the pseudonym Matson Jones.) Rauschenberg was also stage manager and lighting designer for the Merce Cunningham dance troupe. He was an occasional emergency choreographer (Pelican). You see? Hand-to-mouth, improvised, a “career” made from whatever was ready to hand.

Then, in 1964, he took first prize at the Venice Biennale and arrived. The jobs are, in their way, a perfect emblem of Rauschenberg’s art – unrelated, aleatoric agglomerations of items that happened to stray into the force field of his personality. In Alice Oswald’s long poem Dart, we hear at one point the voice of a stonewaller: “. . . you see I’m a gatherer, an amateur, a scavenger, a comber, my whole style’s a stone wall, just wedging together what happens to be lying about at the time”. This, too, could be Rauschenberg, ransacking the junkyards, with one eye on the gutter, for the found object, the overlooked, the discarded, the down-at-heel detail of daily life. In the Tate catalogue (but not in the exhibition) is a work called Hiccups. One visual burp after another, it consists of separate, one-size, totally heterogeneous items silk-screened and zipped together. Rauschenberg was said by Jasper Johns to have invented more things than anyone except Picasso. A slight exaggeration. Rauschenberg’s central inventive coup was the combine: that notorious stuffed goat with the automobile tyre round its middle will serve as an example.

For the New Yorker critic Calvin Tomkins, this was the legacy of the European surrealists – Breton, Duchamp – who took refuge in America during the Second World War. Rauschenberg’s combines are as arbitrary as the unconscious. His scrolls, his late work The 1/4 Mile or 2 Furlong Piece, are a kind of stream of unconsciousness, works of instinct and intuition held together by his assumed authority. (He once forgot to make a portrait of the Paris gallery owner Iris Clert, so sent a last-minute telegram: “This is a portrait of Iris Clert if I say so – Robert Rauschenberg.” The French loved it.) The results are a deliberate unconscious chaos, which, like dreams, give off the sensation, but not the substance, of reason.

This important and vibrant show at Tate Modern usefully complicates this accepted narrative – with its implicit emphasis on the artist as magus, performing a kind of magic, of visual hypnosis. To give one example, there is a big billowing work called Glacier (Hoarfrost) (1974). It is an emperor-sized sheet, with solvent transfer of newsprint on satin and chiffon. There is a pillow underneath, more or less invisible, to create the billow. It is a work of straightforward representation, of realism. It is a glacier in which the illegible newsprint serves as shadow, as a great and exact donation of texture. There is an Elizabeth Bishop poem, “Varick Street”, which describes a factory at night: “Pale dirty light,/some captured iceberg/being prevented from melting.” All the grime, all the dereliction and detritus of the glacier is captured in the Rauschenberg.

Leo Steinberg, a shrewd but not uncritical supporter of Rauschenberg, rejected the idea, first mooted by Robert Hughes, that Monogram’s stuffed goat forced through a tyre referred to anal sex. Steinberg preferred to think of the work as “funny”. Indeed, just behind it is a brown tennis ball like a (large) goat dropping. I thought of Alexander Calder’s chariot in his Circus: when Calder started to improvise performances around the work, he would scatter then sweep up droppings behind the horses. Here the tennis ball’s appearance is prompted by the representation of the tennis player Earl Buchholz on the hinged platform supporting the goat: providing an alibi. There is also a rubber shoe heel, which has trodden in something – bright-blue lapis lazuli – another ambiguous allusion to excrement, here transfigured and glorified. Here, too, a man is crossing a gorge on a tightrope (signifying danger), and there is a high-ceilinged room with several pillars (easily read as phallic). “EXTRA HEAVY” is stencilled in one corner, a touch not without ­significance, to nudge us away from frivolity. Goats are a traditional byword for lechery. Two more possible indicators: we have to ask why the tyre isn’t whitewall but painted white on the tread of the tyre, a deviation from the norm. Is it prurient to wonder if this represents sperm? The second touch is a man with his arms akimbo, casting a long shadow – a doubling at once different but identical and therefore perhaps a figure for homosexuality.

We are used to the idea that Rauschenberg was interested in eliminating the artist’s presence and personal touch. At the beginning of this show, we have Automobile Tire Print, the black tyre track on 20 sheets of typing paper that was laid down by John Cage driving his Model A Ford; it is an artwork whose execution is twice removed from Rauschenberg by the driver and his automobile. There are, too, the dirt paintings, as arbitrary as Warhol’s later piss paintings – which produce, in Dirt Painting (for John Cage) (1953), very beautiful, random, blue-grey mould. These are works in which the artist cedes agency to natural process. Nevertheless, it is impossible, I think, to look at the Cage dirt painting and not be forcibly reminded of the marginalised artist and his palette with its attractive, accidental accretions of pigment.

Despite this posture of disavowal, Raus­chenberg’s work isn’t devoid of same-sex iconography. For example, he is drawn, time and again, to Velázquez’s Rokeby Venus and Rubens’s Venus. Both are quoted several times, reproduced in silk-screen. Why? Partly an act of magisterial appropriation and a demonstration of self-confidence. (An act of felony itself stolen from the Picasso who repainted Velázquez’s Las Meninas, part of a sustained campaign of annexing the overbearing classics. No false modesty in Picasso.) Rauschenberg’s Monogram goat is also an attempt to replace Picasso’s signature goat – said by Picasso to be more like a goat than a goat – by a monogram, a sign of ownership, like a pair of monogrammed slippers or shirts.

The other reason for the quotation of Rubens and Velázquez is that both nude women are contemplating and presumably admiring themselves in mirrors, mirrors that in both cases are held up by cupidons. The perfect topos of self-love – and therefore of same-sex eroticism. Originally, the stuffed goat (stuffed!), with its horny horns, was set against a painting called Rhyme (a not insignificant title, suggestive of sameness and difference). Rhyme (1956) has an actual necktie on the left. On the tie are grazing cows and a four-bar corral fence. In the centre of the picture are dense squiggles and squirts of colour – again like an artist’s palette, but which here represent a pallet or bed. Above the bed is a bit of lace and adjacent to the lace a red ball. What we have here is an aubade, dawn through lace curtains, and the tie as an indication of (male, out-of-towner) undress. Of course, nothing is explicit. Yet the self-censorship, the furtive and necessary concealment, is represented – by some kind of structure that has been removed, leaving behind trace elements. And what are they? Angular outlines and screw-holes, a sexual metaphor you can find in Maupassant’s Bel-Ami. Someone was screwing here.

Bed (1955) features the famous stolen (and very beautiful, subtly patterned) quilt. At the point where the sheet turns back and the pillow is on view, both are liberally stained with paint. The paint is both fluids and (deniable) paint – paint as itself and a synecdoche. Leo Steinberg wants to restrict the combine to a self-referential aesthetic statement – the flatbed horizontal as opposed to the vertical hang, which he sees as Rauschenberg’s primary revolutionary innovation. But while Steinberg is right to dismiss ideas of murder and mayhem in Bed, the action painting mimicked here is also surely mimicking action in the sack.

None of this is certain. The illegality of homosexuality in 1955 made explicitness out of the question. But I think it unlikely that something so central to Rauschenberg’s identity – his sexistentialism – should be completely absent from his work. Even aesthetically programmatic work such as the very early 22 The Lily White (1950) has references to homosexuality. It is an off-white painting with outlined sections like a street map, each of them numbered. The numbers are sometimes upside down. Steinberg believes this is a strategy to subvert the accustomed vertical hang, because it is not clear which way up it should go. I think the numbers are upside down because they are inverted, with everything that adjective denotes in the sexual context. And the shapes are revealing, too: it is made up of extended interlocking jigsaw shapes that mirror and fit into each other. The title refers to the lily-white boys of “Green Grow the Rushes-O”.

Erased de Kooning Drawing (1953) can be dismissed with Harold Rosenberg’s ­famous quip: “The less there is to see, the more there is to say.” Rauschenberg, the junior artist, persuaded Willem de Kooning to give him a drawing that he would then erase. De Kooning chose a drawing that used oil crayon so that Rauschenberg would have a proper task. It took him a long time. And actually, though no one says this – they are too interested in the sacrilege, in the idea of erasure, in destruction, in the concept – the erasure isn’t complete. It  isn’t the promised blank that you don’t need to see to understand. You have to see it to see the Wunderlay.

What does it mean? Partly, obviously, the picture is Oedipal, an act of aggression against a prior master by a junior. Second, the end product is “poetry”, according to Rauschenberg. You can just make out the ghostly marks so that the surface is like a veronica – or like a romantic fragment. It brings to mind Coleridge’s imitation of fragments of antique poetry, creating an aura of irresolvable suggestiveness. On the surface are extra marks, 12 of them, whose provenance is uncertain, but whose presence is as indisputable as the vague but redolent under-image.

Suggestion is the ground note you take away from this show. In Untitled (1955) there is a sock and a parachute – the combine of paint and actuality, somewhere between painting and sculpture – but also to the left, some crumpled paper, overpainted in white, that reveals an eye, nostrils and a retroussé upper lip with phantom teeth. There is painted cloth, taken from pillow-slips or bedlinen, with a decorative milling effect, which makes this Rauschenberg’s bed scene, a long time before Tracey Emin. Similarly, Short Circuit (1955) incorporates work by Jasper Johns and Rauschenberg’s ex-wife, Susan Weil, hidden behind doors. It is a work all about concealment, reveal and suggestion.

There are many, many beautiful things on show here, exemplary energy, and a few empty failures. Don’t miss Untitled (1958) which hangs, from two tarnished safety pins, a khaki handkerchief, treated and soaked, so that you can make out the pattern in the weave. The humble snot-rag transfigured. Its square is a warp of frail rust, a tuille. Above it is a frame of grey-painted cloth, showing a trouser loop and that milling effect again. It is stunning. And so are his majestic cardboard boxes – Nabisco and Alpo for Dogs – makeshift sculptures that read as solid wood, charismatic brand-name Brancusis.

“Robert Rauschenberg” runs until 2 April 2017. For more details visit: tate.org.uk

This article first appeared in the 01 December 2016 issue of the New Statesman, Age of outrage