A book and a birthday have prompted me to look back at my time twenty years ago as writer in residence in the palliative care unit of Dumfries & Galloway Royal Infirmary. The book, the winner of the 2017 Man Booker, is Lincoln in the Bardo by George Saunders.

The historical seed for this stunningly original novel, which takes place over a single evening in 1862, is President Lincoln’s grief for his son, William ‘Willie’ Wallace Lincoln, who died of typhus when he was eleven. There were newspaper reports of a grief-stricken Lincoln returning to the crypt several times to hold his boy’s body. The Georgetown cemetery where Willie was buried becomes the bardo of Saunder’s novel.

The bardo – for those of you who don’t know, and I didn’t – is a Buddhist term for the transitional state between death and rebirth. What happens in this state is defined in The Tibetan Book of the Dead. In Saunders’s novel, the Tibetan Buddhist bardo is merged with a kind of Dantean limbo and Catholic purgatory. Willie is not alone. The cemetery is populated by a horde of spirits unwilling or unable to complete the journey, to truly die. The novel, full of quotes real and fictional, is told in the many voices of these restless souls.

Without being able to go along with the notion of reincarnation, this post-death process, borrowed by Saunders from The Tibetan Book of the Dead, from acknowledging that one actually is dead, through a karmic replay of one’s past, plus visits from various deities, contains, for me, a wonderfully logical imagination. One is not just dead-dead. One’s spirit is going off somewhere. Taking its time.

Anyway, the novel took me back to the Alexandra Unit (the palliative care unit) in Dumfries which, in retrospect, seemed a kind of bardo, the patients there being beyond cure, in transition if you like, between life and death. I remembered how some of the patients had strange morphine dreams which seemed to bear some resemblance to karmic replays. Who is to know? Memory and morphine can bring up strange narratives. I remember L, who in his eighties had a powerful memory of his schoolteacher who had been shell-shocked. L himself had played in a dance band in Glasgow. Sometimes in his confused state he forgot he was in hospital and thinking he was at home demanded that the nurse bring him the memorabilia from his dance-band days.

Mostly I wrote the stories, memories and poems those still well enough to tell them, told me. In B’s case it was almost an entire potted biography from his childhood in the Gorbals to his time in the navy. (To my frustration he died when he was just about to tell me about smuggling gold. Talk about a cliffhanger!) Another patient dictated a letter to his daughters. ‘Never say no to a hug,’ he told them, which made me cry. E wrote a sonnet about the arrival of her baby brother; H, a shepherd, told of his month on the hill at lambing time; A, a farmer’s daughter, told of her one sweetheart, a padre in the war who never came back. Sometimes a relative, waiting days and nights at a bedside, found relief in talking.

In the late nineties, this was quite a pioneering residency, funded by an endowment to the hospital’s palliative care unit and, partly, by what was then the Scottish Arts Council. Within the context of palliative care – emotional support, dignity, help with bereavement – having a writer on board was thought to be therapeutic. I was to work mainly with cancer patients, but also staff and relatives. It never seemed possible to prove the therapeutic value of the residency in some kind of statistical way, though I have absolutely no doubt that it had one. Patients in hospital are done-unto. I was there wanting something from them, a story, something that would tell others about their lives after they’d gone. Patients had something to give. After death, their relatives often asked if there was something written, a caught memory, a message, something said, something the next-best-thing to lasting.

Looking back at my time at the hospital, what surprises me now is the sudden ache it gives me: a pang like long-delayed grief. I’m surprised because I’d regarded the year as one of the most important of my life. I’d had a strong sense of purpose. I’d made good friends. Publishing a collection of poems and stories by patients had given me a sense of achievement. The post was challenging, yes, sometimes heart-rending, but intensely satisfying and for me, well, happy.

So why the ache? I think it’s to do with so much hope. Lately there have been so many stories which could carry the headline of Fighting to Survive. It isn’t just the agony of parents fighting to keep a very ill child alive, it’s somehow everyone, everywhere. These days to fight a terminal prognosis, to try all remedies, to travel to whatever country offers new help, seems almost expected. Against all odds, against all ills, against all cancers, patients hope. It’s reactivated the memory of hope in the bardo of the Alexandra Unit. It’s not the dying of those patients, who I listened to and scribed for, that has caused this ache. It’s the memory of their hope.

In her book, All That Remains: a life in death, Sue Black, one of the world’s leading anatomists and forensic anthropologists, writes ‘Where in the past we might have accepted a terminal prognosis and turned to a church to ensure the health of our souls, now we are more likely to trawl the internet in search of every last vestige of temporal hope that might keep us alive for just a little bit longer.’

Even Tessa Jowell, who spoke so movingly in the House of Commons urging research into brain cancer, was driven by hope to search for a cure outside the UK, consulting medics in America and seeing a consultant in Germany. Hope fuels energy, though not always. In the Guardian, Owen Jones took issue with what he called ‘that whole narrative of cancer as a battle […] with the implication that you either win or lose on your own steam.’ His father, Jones writes, was ‘just the bewildered victim of a malign invisible force that beat him up and then killed him. […] His own attitude […] had no bearing on his fate.’

Also in the Guardian, the famous potter, Edmund de Waal, reading books submitted for the Wellcome book prize, wrote that ‘There is change in the public space around death.’ Praising the hospice movement and the training in palliative care as one of ‘the most compassionate changes to occur in the last 30 years,’ de Waal suggests that this change is slowly moving outside the hospitals, clinics and hospices.

I’m writing this during a week that’s been called ‘Good Death Week’ — which may be part of what de Waal means. Maybe there is just something perverse in my nature that dislikes this soubriquet. You don’t have to think for long to realise that there are all too many absolutely dreadful deaths. There’s also the current (fashionable?) notion of ‘death cleaning’ whereby you have a very major clear out, to save your offspring the trouble. Well yes, I can go along with this, though not very cheerily.

Which brings me to thoughts of my next birthday. I’ve had more than my three score years and ten. Death is on my mind. And I feel bad about the question that keeps lingering in my head when I read another battle-to-survive story: what about giving up gracefully? Isn’t this ‘fight’ slightly unseemly, like staying too long at the party? Of course I shall probably be just the same, clinging on for, what do they say, for dear life? But I hope not.

When, twenty years ago, I applied for the post of writer in residence, I gave a lot of thought to my motives. Mostly I felt they were all wrong, at least possibly all wrong by NHS standards, being not entirely unselfish. First of all, it meant working in what seemed to me to be the borderland between life and death and I thought that’s where a writer ought to be. (I remember seeing my first dead body and being absolutely astonished at how empty of person it was). Also, as death then and now really is mostly kept so hidden, I thought I might actually learn how to die well. I wanted to be useful. Sitting at a desk writing and throwing much of it away even now doesn’t feel very useful. Lastly, but by no means least, I thought the post might be a homeopathic cure for hypochondria. It wasn’t!

Now thinking back to my time as writer in residence, I particularly remember S, a young mother whose angry poems included a prayer that she be allowed to live to look after her children. S didn’t want the peace and quiet and comfort of the palliative care unit. She wanted the noise, the comings and goings, the life of the downstairs wards where hope still existed.

She left letters for her children.

Diana Hendry is a poet and children’s writer. She’s published six collections of poetr; her seventh, The Watching Stair, is published in September. She has written many books for children, winning both a Whitbread Award and a Costa shortlisting. Her most recent junior novel is Whoever You Are.

06-08-2018

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