Authors: Robert McCrum
When asked by visitors at this time about my feelings, I liked to pretend to myself that I was taking a well-deserved
break from my office, but in truth, when I look back on these days, I remember two kinds of anxiety. The first, which was quite irrational, was that my company would stop paying my salary and that I would not be able to afford to convalesce at leisure. In hindsight it was odd, I suppose, that I should be concerned with money and my bank overdraft when, physically speaking, I was incapable of tearing off a cheque from its stub. The fact is that even in hospital we cannot escape the tyranny of the mundane. Just as death and taxation are said to be always with us, so also are sickness and bill-paying.
The second worry, which was not answered by any evidence, was that my co-workers were merrily subverting my authority and opinions in my absence. A publishing house expresses a vision. During nearly twenty years I had played a central role in creating, developing and shaping this vision, generally through the books Faber & Faber had published. I became convinced, quite wrongly as it turned out, that everything I’d done was being scattered to the four winds. I was so ashamed of this self-centred anxiety that I could not bring myself to discuss it with anyone, not even with the chairman of the firm, Matthew Evans. It was not that I felt redundant suddenly, more that I had somehow lost control of an organization in which I had believed myself to be indispensable. I have discussed this aspect of my illness with many stroke-sufferers and they almost all confirm having experienced similar feelings of anxiety
vis-à-vis
the workaday world from which they have been disconnected.
The other aspect of my incarceration in the Nuffield was that I finally came to understand what the Thatcherism I’d lived through meant in practice. For a decade
and a half the country had been privatized and deunionized and monetarized and reorganized and, although I’d followed it in the newspapers, it had made little impact on me personally, except insofar as I was apparently better off (bigger salary, less tax, etc.). Now I could understand the true meaning of a privatized health service: invoices for every treatment, staff shortages, overworked ambulance crews, teams of sharp-suited hospital administrators conducting fatuous management exercises and the desolation of empty wards.
I lay, staring at the hospital ceiling, trying to remember, as a kind of mental exercise, the names of the writers I’d published these last sixteen years, country by country. Occasionally, I would spend hours checking through this list, staring out at the sky and wondering when I was ever going to be released from the torment of immobilization. Daydreaming was one way to escape; the other was my Red ‘n’ Black notebook.
One of the strange things is that when people come through the door, I don’t know for a minute who they are, and it takes a while to remember who it is; sometimes I don’t even recognize them, which is rather peculiar. It’s at moments like these that I wonder if I’m losing my mind. Some days, madness seems just round the corner.
I find that I am feeling very tearful at the moment, not merely tears of anger, or rage, or depression: I just feel very emotional, and can cry about the smallest thing.
Feeling quite blue and tired today, as if grey stormclouds were everywhere. I’m getting that helpless,
hopeless feeling again. I feel as if I’m all alone. I so depend on the last thing I have heard, the last person we have talked to, so that way my moods fly around all the time. If R. is glum and seems unwilling to try, I feel despair. If I talk to someone who says he is making good progress, I feel elated. A neurologist came in the other night and was so dour, so unsmiling, so creepy that it made me want to cry (R. said he was a typical Englishman of a certain sort, and that he could easily handle him). He talked about parameters and profiles, and then said that R.’s left hand would be ‘useless’, which was horrifying to hear. But then he amended it to say that it would be much better than it is now, which to my mind means that it will be better than useless. I felt so angry and scared and indignant on R.’s behalf. I’m sure these doctors have little psychological tricks for what they say. But I’m equally sure that they are uncompassionate, semi-aliens who just don’t know how to deal with actual people. Maybe it’s just too depressing for them giving bad news all the time, maybe it’s easier to look at scans than to talk to patients.
This is my last day in the Nuffield ward. I had physiotherapy at eleven. Tomorrow I shall be going to the Devonshire at two thirty. They have booked an ambulance to take me. Julie Kavanagh [
friend, biographer of Frederick Ashton
] rang, and we talked about Raymond Blanc’s stroke [
from which he made a full recovery
], then John Walsh [
friend; journalist
] rang, wanting to do a diary story in the
Independent.
I found talking to him very alarming and difficult, and felt very tired afterwards. Speech is very tiring, and I find that my volume is very
hard to control. My tongue often feels very heavy in my mouth, despite the therapy from nice Dr Click [
Whurr
].
I have developed a concept of the ‘good’ waiting period and the ‘bad’ waiting period. A ‘good’ waiting period is one where you know the outcome, and where you know that you are going to leave when they say you’ll leave, or where you will be doing things when they say you’ll do things, and a ‘bad’ waiting period is when you don’t know what is going to happening, and you are just hanging about.
Tomorrow I shall have been here four weeks, and in summary I find that I have been amazed by the loving warmth and generosity of my friends and the interest of the outside world, stupefied by the boredom of the routine of the hospital, and the exhaustion of convalescence. The nights are often very difficult. I have become obsessed with the details of mobility, especially the wheelchair operation.
To the Devonshire rehab tomorrow. I find I get very nervous whenever anything new happens, and this particularly because it’s a change in what has become a sort of refuge, and because it means a whole new round of tests where they evaluate R.’s condition. I’m so afraid of bad news – that they’ll say he’s not going to get much better, that he won’t be able to walk well (or even at all) and won’t be able to use his hand again. Doctors scare me, medical evaluations scare me, new predictions (or non-predictions or people looking sombre and negative and using words like ‘useless’) scare me, the future scares me. R.’s using his leg more, and leaning on his left elbow but still nowhere near walking. People keep telling us
stroke stories but it’s still a complete mystery to me at least how he is supposed to walk. Were the strokes in those cases less severe than this one? More? Should more have come back by now? Or does that not matter so much? So much depends upon what happens at the Devonshire, and so I’m trying so hard not to let mine and R.’s expectations become unrealistic. I think R. needs to work and we both need good fortune and patience and perspective.
Pulling through. R. quite confident, at least to me, because he knows how scared I am. But it’s so tiring, for both of us, and progress is so incremental. I don’t know how much of a long view I need to take. I don’t know what it’s right to hope for – I have to learn how to hope for the best but prepare myself if it doesn’t happen. And so does Robert. He seems sure that it will be okay, but I wonder if he really believes it, and I wonder how realistic he’s being, and I wonder if his hopes, too, are going to be dashed in the end. I pray to a God I don’t believe in. But I had an absurd thought the other day, that the thing about God is that even if you don’t believe in him, he listens to you. Maybe there’s some religion in me after all.
We study Health, and we deliberate upon our meats, and drink, and air, and exercises, and we hew, and we polish every stone, that goes to that building; and so our Health is a long and regular work; But in a minute a Canon batters all, overthrows all, demolishes all; a Sickness unprevented for all our diligence, unsuspected for all our curiosity; nay, undeserved, if we consider only disorder, summons us, seizes us, possesses us, destroys us in an instant.
John Donne,
Devotions
Perhaps not surprisingly, in the aftermath of my stroke I became quite obsessed with death, and with the skull beneath the skin. This perception was enhanced by my everyday encounters as a patient. I discovered then – and throughout my convalescence – that we (and our loved ones) are all unwell. I lost count of the number of times people confided in me either the recent death, or the profound sickness, of someone near to them, or their own close encounter with acute illness. Some people described transient ischemic attacks; several more told
me of friends or relatives who’d suffered a recent stroke (or heart-attack) and who had, none the less, gone on to make a complete/partial/rapid/gradual/impressive recovery. In short, my illness was an eye-opener not only to my internal world but to my external one, too. I felt reenfranchized into a world of feeling from which I’d become dissociated.
So, when I look over my own past now, the figure of Death seems to be standing there at every turn, in one guise or another. Years before my own ‘brush with mortality’, I find that the theme runs like a dark thread through my imagination. Even when I was at home in England I was irresistibly drawn towards it. (My most recent novel,
Suspicion
, completed just before I fell ill, is narrated by a county coroner, an expert in untimely death. ‘So often,’ says my fictional
alter ego
, ‘have I travelled the grim byways of mortality that there was a time when, against my will, I used to think of myself as the angel of death.’) Perhaps this is a family trait. For some years, my mother had been the chair of a hospice in Cambridge. Not long before my first meeting with Sarah, I had spent a day at the hospice with Dr Tim Hunt, the resident doctor and an acknowledged specialist in death and dying. It was a day that came back to me many times during my convalescence, reminding me that, compared to terminal illnesses like cancer, the stroke-patient is, in the words of the Beatles song, getting better every day, better, better, better.
When I take my mind back to that outing to Cambridge, I see that then I was fascinated by imminent death, fascinated and scared, as those of us who have had little to do with it often are. Now that I’ve had a glimpse of this terrifying figure, an inkling of what it might actually be like to die, and have survived, I find
that I no longer have that anxiety, but naturally I long to live. We all do, and the sudden, irretrievable finality of death remains so total, so colossal – a massive black wall, rearing up, tidal wave-like, to engulf us – that it’s hard not to be awed by it, as we should be. ‘Death,’ observed W. H. Auden, ‘is like the rumble of distant thunder at a picnic.’ I have not lost my respect, of course, but I have lost my fear. I have known what it feels like to be carried away, helpless, towards oblivion and finding by great fortune the current slow and swirl towards the bank, leaving me sprawled, quite helpless, on a new shore.
The residue of nearly dying, and of being conscious through most of the experience, feeling detached and quite serene, is that the world still seems painfully vivid and precious. I have not, however, lost my fascination with death and dying, and when I was recovering in the National Hospital, my day with Tim Hunt remained an especially sustaining and important memory.
At the beginning of my visit to the hospice, a pleasant, single-storey brick building in the grounds of Brookfields Hospital, on the edge of Cambridge, Tim Hunt had reiterated to me that amid the manifold uncertainties of our take-off from this world there is one stark and unavoidable truth: the medical profession does not much care for the dying. Doctors are trained to diagnose and cure. Patients are conditioned to believe in the healing power of surgery and drugs. In medicine, death equals failure and dying is a reality that only a few can bear to contemplate on a professional basis. Doctors hate an illness they cannot cure, which is part of the explanation for the profound and chronic neglect of stroke-patients. (In many provincial hospitals, the out-of-the-way bed at the end of the ward is often still referred to as ‘the stroke
bed’.) But if, in the jargon of the National Health Service, ‘no further treatment is appropriate’, i.e. you are terminally ill, the most comfortable departure lounge is likely to be a hospice.
So how would you choose to die? Quickly? Peacefully? Surrounded by grieving relatives? The hospice caters to all our needs, providing comfort and dignity for the dying in their battle with the demons of fear, loneliness, depression, guilt, anger and chronic fatigue. It’s a daunting task but one which has, in the last decade, begun to attract a new generation of doctors specializing in what is euphemistically known as ‘palliative medicine’. Dr Hunt is one of the acknowledged pioneers in this field, a doctor of Death, so to speak.
Hunt, who has the dress and demeanour of a slightly mad professor (ill-fitting suit, wispy hair, flying hands, gangly walk), has treated about five thousand patients in the last ten years. Not one of them has survived. Yet many went to their graves firm in the belief that he is a ‘magician’, even a ‘genius’, words which I heard applied to him during my visit. Something quite odd, even uplifting, can happen when the process of dying is treated for what it is – a matter of extreme fascination. Hunt had been a protégé of the late Peter Medawar, whose autobiography,
Memoir of a Thinking Radish
, contains some characteristically acerbic pages on his own stroke and the quality of medical care he received in hospital. Hunt explained how, at his hospital, Adden-brookes, he’d become interested in this neglected area: ‘I have to say we didn’t look after dying patients very well. The usual sequence of events was that the consultant went round and he’d say, “That chap’s very ill. Start the heroin.” One day – I’ll never forget this – there was a registrar who decided on this policy for a chap of
thirty-six who was dying of a kidney cancer. At about five o’clock, the nurses came to me. The man wasn’t in pain. Why should they bump him off, as they usually did? That’s how I became interested in people who have been put on one side because they no longer present the challenge of diagnosis and treatment to the medical profession. It wasn’t a high kudos thing to be doing.’ Death, notoriously, has become an embarrassment, a taboo. Death is what happens to other people. Violent death occurs in faraway places of which we know little, East Timor, perhaps, or Indo-China. The older generation can remember standing in silence at the passing of a hearse, but in our time, at least until AIDS, the emphasis has been on cure, on long life. Fifteen years ago, hospices were seen as dormitories for the dying. As doctors became aware that there were some diseases that were beyond the power of the latest wonder-drug–multiple sclerosis, motor-neurone disease, various kinds of cancer – hospices became places where (thanks to the judicious use of analgesics) patients could continue to survive without the pain usually associated with terminal illness.