September 2012

Essays

Gail Bell

Reading to the dying

My friend Margaret hallucinated a wedding in the final weeks of her life. Some of her old animation briefly restored, she poured drinks for her guests, called for coffee, and asked me in a light, mocking tone what I thought of the groom.

Happy to be invited, I jumped straight into the hallucination.

People desperate to hold on to the dying have done worse. The stroll through the palliative care ward had been enough to show me how sombre and draining the final goodbye could be, and made me bless Margaret all the more for asking me to drink an invisible toast to a bride and groom.

I’d love to say Margaret and I clinked glasses but that would be unfaithful to the moment. She scanned my face, found nobody she recognised and returned to the phantom delights of her party.

 

The friendship went back to my schooldays. Her best qualities – love of living, authenticity, the acorn-gathering virtues of a book lover – were riches I wanted in my own life. I’d never had her facility for pulling quotes out of the air, but we often thought of the same poem at the same time. Where she could recite the lines word-perfect, I could retrieve only a sense impression. Watching her inhabit the wedding, I thought of a Li Po poem, the one about drinking alone in the moonlight, with its unguarded joy and bugger-the-critics tone. If I could have prompted her, she’d have given me:

 

Beneath the blossoms with a pot of wine;
No friends at hand, so I poured alone;
I raised my cup to invite the moon,
Turned to my shadow, and we became three.
 

 

Instead I had to look up the words. Within days she slipped away into a long gasping sleep. A new sign appeared over her bed: ‘QOL’. An acronym for quality of life, it has a specific meaning in a palliative care hospital room. When the surrogate decision-maker and the medical team decide on QOL, the pain-sparing drugs are increased and hydration and feeding cease. Any desire on the part of family to “fix the fixable” must be weighed against what is known about the course of the illness; any “projection of one’s own wishes” onto the dying carefully discouraged.

After QOL was written up, the unbearable silence came down like a curtain. I didn’t hear her speak again.

There was precious little to do at the bedside. Cards were arranged, flowers refreshed or discarded. The angle of the venetian blinds fussed with. We, the vigil sitters, smoothed her brow, held her hand, paid attention to her breathing, worried about the play of grimaces over her face. Unsure how to behave, we hovered, alert and ready to act.

For days the pattern repeated. The flowers wilted, the water greened. The tissue box emptied. The air took on the colour of the rainclouds outside.

Most often I sat with her daughter. We chatted across the room. It was a relief to hear about the fretting dog, the vet bill, the roadworks choking the highway, a relief to be free of one-sided conversations with the woman in the bed. Life has to go on, we said. We have to go on. The waters will close over Margaret but we are still rowing.

When the silence weighed, I set off along the corridors to walk out the kinks in my legs. The cafe became a refuge where I could eavesdrop and think about better times. One of my notes was copied from Hermione Lee’s biography of Virginia Woolf: “We are haunted by people we have loved, but with whom we have not completed our conversation …”

I was getting lost in my struggle to work out where Margaret had gone.

Medically, it was straightforward. She’d slumped into the arms of morphia and midazolam. Her organs were failing. There were “unmistakable signs” that the end was near. I understood that, so why was I puzzled?

I was carrying around the Dalai Lama’s Sleeping, Dreaming and Dying, which describes this in-between world. What he says seems strange to Western ears. When someone is in the process of dying, a white light is said to descend from their head and stop at the heart centre. From below the heart, a red light ascends. When the two lights converge, “there is a period of blackout, as if [they] simply lose consciousness altogether”. After this comes the clear light of death, which may last seconds, hours, days or weeks. Persisting in this state, in the clear light, means “the connection between the very subtle energy-mind and the gross physical body has not yet been severed”.

“Such a person is said to be in the state of dying, but has not yet entered death.”

As curious and esoteric – and as problematic to neuroscience – as these words may be, they propelled me into a dash for my bookshelves. There was something for me to do. I could read to Margaret.

I grabbed my Penguin edition of Gerard Manley Hopkins and brought it to the bedside. Kingfishers and dragonflies flashed their fiery colours in the darkened room. Wind walks and silk-sack clouds answered the dull stillness of white sheets. The colours of dying summer blazed over the nurse as she pushed a bolus of morphine into the cannula. Another reader released the gold-vermilion of ‘The Windhover’.

“Keep going,” said the nurse. “It won’t be long now.”

But we already knew.

After the others had said their goodbyes, I picked up Pride and Prejudice. Jane Austen had been dragged into all kinds of strange embraces – zombies, vampires, werewolves – why not palliation?

“It is a truth universally acknowledged …” I began, and read aloud for nine chapters. I got to the part where Mr Darcy “could not be prevailed upon to join in their censure of her [Elizabeth Bennett], in spite of all Miss Bingley’s witticisms …” A different nurse told me how much she loved the movie.

Some time the next morning Margaret fell out of the clear light into the final darkness.

I’m not sure I feel reassured by the Buddhist take on death, nor do I always believe medicine’s hopeful narratives, but the DL’s definition of the spiritual speaks to me: “I say ‘spiritual’ without meaning any particular religion or faith, just simple warm-hearted compassion, human affection, and gentleness.”

Reading to the dying might be the equivalent of whistling in the dark, or it might be a small gift to place in the clear light. If I were hanging in there, with a tiny bit of energy-mind still pulsing (and here I am projecting, contrary to good advice), I’d want to be ushered out to the sound of wit and poetry.

Gail Bell
Gail Bell has worked as a pharmacist, educator and writer. Her books include The Poison Principle and Shot: A Personal Response to Guns and Trauma.

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