Archives for category: Death and Dying

Donal Ryan’s The Spinning Heart was such a wonderful read I needed little enticement to read the Irish author’s earlier written but later published The Thing About December.

It is even more wondrous.

The Thing About December is a tragic book, which goes to the very depths of human sadness and despair in a way that clings to you. It is deeply moving and affecting, yet strangely does not overwhelm. It is a challenging undertaking for authors to truly engender empathy in their readers. Ryan manages it magnificently.

The central character Johnsey is the quintessential tragic hero. Ryan speaks through Johnsey, to the extent that we see the world only as Johnsey sees it, and so authentically creates this perspective that we come to believe this as the only true vision.

“People are better inside your head. When you’re longing for them, they’re perfect.”

Johnsey’s seeing of the world may seem naïve and child-like. Yet it is extraordinarily pure and real. He does not have an explicit diagnosis, but we get the impression that he is ill-equipped for life, struggling to interact with others and to build relationships away from his parents. An only child, he is bereft when both his father and mother die.

“Loneliness covers the earth like a blanket…It runs down the walls inside of the house like tears and grows on the walls outside like a poisonous choking weed.”

His father dies first, cancer – “riddled by all accounts’. Ryan is a magician with words that he strings together to create emotions that almost tear you apart with their pathos. Speaking of the sofa that was central to the life he shared with his parents, Johnsey comments following his father’s death:

“That long, battered couch was covered in boxes and bits and bobs that had no business on a couch. It wouldn’t have been balanced right, anyway, without Daddy. There’d have been too much empty space on it, and that empty space would draw out your sadness like the vacuum cleaner draws out dust from behind the television: you’d forgotten it was there until you went rooting around for it.”

Johnsey’s mother retreats from the world following her husband’s death – “it was hard enough thinking of things to say to a woman who had hardly any words left for the world, only lonesome thoughts and muttered prayers.”

Johnsey’s perhaps naive at times view of the world is particularly touching:

“…three kinds of cancer to do for Daddy: he got it in his stomach, lungs and brain. Three kinds, imagine!

And he nearly bested them too.”

Johnsey cleared adored his father – “How could a man’s life just be made up of sadness over his dead father”. His mother’s life as a widow was consumed by loss and sadness, “a little hunched-over thing, like a question mark, wrapped in sorrow and silence.” Although often struggling with how to interact with people, he has an astute sense of the behaviour of others. He is aware how tiresome his mother’s protracted grief appears to others, who believed that she ‘should be getting over it’, two years later after her husband’s death. She never did.

“Sympathy doesn’t last forever. Like a pebble thrown in a river, it’s a splash and a ripple and gone.”

With his peculiar and perhaps paradoxical mix of naivety and grownupness (“The world doesn’t change, nor anything in it, when someone dies.” “The sky was the same blue the day after Daddy died as it was the day before”), Johnsey increasingly occupies a world of isolation and alienation, defined by a loneliness that’s “nothing and everything at the same time.”

“It seemed as though having a break from being lonesome made it ten times worse when you were once lonesome again.”

In Johnsey’s world, we glimpse, and experience such is the empathy Ryan creates, the real complexities, confusions and sadness that define humanness, and the living of it.

“…everything was lovely and normal and comfortable and destroyed forever at the same time.”

CQ

‘A true tale of love, death and DNA’

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I saw this affecting work last night at Jackson’s Lane Theatre, North London. The Penny Dreadful production is currently on a UK National tour. The play is a profoundly thought-provoking piece, which directly challenges us to consider issues around mortality, immortality, and the ultimate question of what happens to us when we die.

Do we cease to be at that point?

The Henrietta Lack story encourages a consideration of this question. Lacks died as a result of cervical cancer in 1951, at the age of 31. However, the cells from her aggressive cancer, known as HeLa and which contain all the DNA that constituted Lack’s genetic make-up, continue to survive and to replicate in laboratory conditions, producing the first ever ‘immortal cell line’. Despite the dubious ethical issues that surround the original procurement of Lack’s cells (her children were never told, and Lack’s cells were public property until 2013), research based on HeLa has been directly responsible for the development of treatments for conditions such as AIDs, cancer, cystic fibrosis and vaccines, and many more. HeLa cells have also provided the foundation for mapping the human genome.

How To Be Immortal interweaves three true stories: Henrietta Lack’s own story and that of Dr Gey and his wife who ‘discovered’ HeLa in 1951, the story that Lack’s daughter Deborah (1996) was born into (she was a baby when her mother died) but only discovered later in life, and the contemporary narrative of Rosa and Mick. Mick, similar Lack, also has a rare and aggressive type of cancer, from which he dies. The issue of research, using cells from his tumour – this time with consent – is presented to the distraught Rosa. She agrees, and the outcome leads to a healing of sorts. Deborah also seems to experience a coming-to-terms with her mother’s death, and with its aftermath

I applaud the blend of science and of the essence of humanness, particularly its essential vulnerability, that How To Be Immortal successfully balances to create a living performance that raises questions it does not necessarily set out to answer. It is our job, the audience, to consider what has been presented to us:

Who and what are we, and does our ‘make-up’ extend beyond our DNA?

When we die, what do we leave behind? A contribution to some genetic pool, or memories, that may only remain until the death of the last remembering person?

Unanswerable questions, perhaps, but worthy of reflection…

Today is the first anniversary of my sister’s death. I am not so sure about formal remembrances and rituals. However, I do feel like sharing some of my thoughts from 2013, my first year without my sister.

Mostly, the past months have surprised me. Little has been how I might have predicted it, echoing the experience of Joan Didion following her husband’s death:

‘Grief turns out to be a place none of us know until we reach it’

The initial period was relatively easy to manoeuvre. I got on with my life as if on autopilot. I remember being grateful that I was alive, and resolutely determined to make the most of my own living. My sister’s death also reminded me of my mother’s grief when her mother and her sister died in relatively quick succession. I was a teenager at the time, the youngest of five children, and the only one still living at home. I was thus unrelentingly exposed to my mother’s ‘decline’, as sadness and doom enveloped her and those around her. I did not want a similar experience for my own teenage daughter, who was herself traumatised by her aunt’s death. Instead, I worked on negotiating a path where we could keep my sister’s loss a presence in our lives, but one that would not destroy us.

To some extent we managed this. However, how we respond to loss cannot be completely controlled and contained. When I have experienced loss previously in my life, I have noticed how delayed my personal response to the trauma of the experience can be. So it was on this occasion. As the acute distress around the dying period and the death itself eased, the loss that evolved from the death manifested itself acutely. Yet the clichés are also true. Life does go on, and passing time does facilitate a living with loss that is manageable. I have not experienced anger at any point. Regret, yes. Guilt, some. Mostly, my emotional volcanoes consist of random and unpredictable moments of acute pain, which are so cataclysmic that every time I feel they will overwhelm and destroy me. But of course they do not. Reassuringly or fatalistically, you continue getting on with your life in the ‘club of the left-over living’.

My sister is buried in another country. I am sad about this. Her graveside is a place I would like to spend time. Yet, for the memorial mass today, I chose not to attend. My other sisters did. The experience of loss has been different for all of us, and not one we have easily been able to share.

What has surprised me most of all, is how much I miss my sister. Living in different countries, we communicated infrequently, and spent time together just a few times a year. Yet, as time goes on, the fact that we will never have those times again fills me with a sadness that is as infinite as her loss.

My sister was older than I am, and so, until this past year, she had always been in my life.

I miss the fact of her, her living and energetic being. I miss how much she used (sometimes) to annoy me. I miss her loyalty and absolute support. I miss her reckless generosity.

I miss.

CQ

This poem, from the current issue of the The New Yorker (http://www.newyorker.com/fiction/poetry/2014/01/06/140106po_poem_twitchell), moved me:

Roadkill

I want to see things as they are

without me. Why, I don’t know.

As a kid I always looked

at roadkill close up, and poked

a stick into it. I want to look at death

with eyes like my own baby eyes,

not yet blinded by knowledge.

I told this to my friend the monk,

and he said, Want, want, want.

Chase Twichell

It reminded me of Philip Larkin, and his poem The Mower, which has a similar impact every time I read it:

The Mower

The mower stalled, twice; kneeling, I found

A hedgehog jammed against up the blades,

Killed. It had been in the long grass.

I had seen it before, and even fed it, once.

Now I had mauled its unobtrusive world,

Unmendably. Burial was no help:

Next morning I got up and it did not.

The first day after a death, the new absence

Is always the same. We should be careful

Of each other, we should be kind

While there is still time.

Philip Larkin

CQ

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Susan Hill’s novel, written in 1974, is a story about loss, relationships, and about how we mourn.

The acute loss central to the story results from the sudden death of Ruth’s young husband Ben. However, a more global pre-existing loss is also unmasked by the tragedy.

Ruth is devastated by Ben’s death, and inhabits a place of unremitting despair where she is untouchable by others. Reluctantly, she attends the funeral, where she resents the mourning of others:

‘She imagined the line of dark mourners mounting the stairs and peering into the coffin. As Ben. Ben. How could they? How could so many people have touched him and looked at him, unasked, since the moment of his death, when she herself had not?

But it was better. She thought, they don’t have Ben.’

‘They were forcing her to take part in some curious ritual of their own…’

My sister’s husband died a few years ago, and I can see her response to his death, and to fellow-mourners, in Ruth’s behaviour. At the time, I struggled with my sister’s reaction, as I tried to deal with both his loss from our lives and also her belief that only she was entitled to mourn this loss.

Ruth, with time, comes to realise the wide-reaching effects of Ben’s death:

‘The death of Ben Bryce had been like a stone cast into still water, and the water had become a whirlpool with Ruth sucked down into the terrible heart of it. But the waves spread out, through the countryside down to the village and beyond the village. People felt changed, as if by war or earthquake or fire, even those who lived closest to death and knew its face.’

She comes to acknowledge her behaviour at the time:

‘But she had been too wrapped up, first within the warm womb of her happiness with Ben, and then in the cold shell of grief. She had not thought of anyone.’

We read to find ourselves, and to witness experiences that resonate with our own. Thus, within In the Springtime of the Year, I found some consolation in its echoes of my sister’s reaction to her husband’s death:

‘…she had kept Ben’s death to herself, as a private thing, tried to possess it utterly and allow no one else the right to mourn…’

CQ

This book was an unexpected delight.

‘Delight’ may not be the best descriptor, as John William’s Stoner is a profoundly sad, at times even bleak read. Yet I felt enriched by the experience. It is truly one of those must-reads.

The title refers to the main protagonist, William Stoner, and the book chronicles his life. We are introduced to Stoner after his death, and from the outset we begin to have a sense of the man and of his life:

‘An occasional student who comes upon the name may wonder idly who William Stoner was, but he seldom pursues his curiosity beyond a casual question…his name is a reminder of the end that awaits them all, and to the younger ones it is merely a sound which evokes no sense of the past and no identity with which they can associate themselves or their careers.’

An only child, Stoner’s parents were farmers. A solitary and mostly silent childhood was spent toiling the physical world of soil and land. Later, he left to study agriculture at university. A required element of the curriculum was English literature, which opened up a previously unknown world to him, one that filled him with wonder and awe. While studying, he dutifully returned home during the holidays to work on the farm. His relationship with his parents remained a largely unspoken one, and Stoner never shared his ‘other world’ with them.

‘He thought of his parents, and they were nearly as strange as the child they had borne; he felt a mixed pity for them and a distant love.’

Discovering a love for teaching, he remained at the university for the remainder of his life, although he struggled to successfully communicate the wonder he himself experienced within, with his students.

The solitary condition of his childhood persisted during his university years:

‘He had no friends, and for the first time in his life he became aware of loneliness.’

However, for a time he did have two friends, one of who commented:

‘You have the lean and hungry look, sure enough. You’re doomed.’

It was a prescient observation, as Stoner’s life proceeded to a succession of tragic episodes, and to a life defined by sadness, an inescapable sadness that he was born into. When his parents died, Stoner reflected:

‘He thought of the cost exacted, year after year, by the soil; and it remained as it had been—a little more barren, perhaps, a little more frugal of increase. Nothing had changed. Their lives had been expended in cheerless labor, their wills broken, their intelligences numbed.’

Any relief that Stoner did occasionally experience from the relentless doom that enveloped his life was short-lived. He married, but it was a failure on every level. They had one daughter, Grace, with whom he was initially very close, but this later evaporated. Having briefly found friendship, his closest friend was killed in the war. He had a lover with whom he had many moments of happiness, but this was poignantly relinquished.

As a result of his life experiences, Stoner mostly lived on the periphery, becoming increasingly detached, dislocated, and numb:

‘…at will, he seemed able to remove his consciousness from the body that contained it, and he observed himself as if he were an oddly familiar stranger…’

‘He felt at times that he was a kind of vegetable, and he longed for something—even pain—to pierce him, to bring him alive.’

The final section of the book, when Stoner is dying, is the most introspective and self-reflective:

‘Dispassionately, reasonably, he contemplated the failure that his life must appear to be.’

Intensely self-critical, and by then utterly defeated by life, he answered his own question on why his life became what it ended up being:

‘What did you expect? he asked himself.’

He is as detached from the fact of his own dying as he has learnt to be about most things in his life:

‘He had no wish to die; but there were moments, after Grace left, when he looked forward impatiently, as one might look to the moment of a journey that one does not particularly want to take.’

The sadness that clings to Stoner’s life is almost palpable. Although unremitting – the reader is never left off the sadness hook – it is impossible to resist reading Stoner. Seduced by the prose and by William’s way of telling, the reader is willingly drawn into a life story that speaks to a universal sadness within all of us.

CQ

I had my first experience of a Death Cafe event last night. Conceived approximately three years ago, the cafes are spaces where people come to ‘drink tea, eat cake and discuss death’ (http://deathcafe.com/). The aim of the movement is to facilitate an openness and awareness of death, thereby enhancing the quality of our lived and finite lives.

Although it was more supper and wine on the menu last night than tea and cake, the event lived up to and exceeded any expectations I might have had. It may seem odd to those who rarely dwell on the inescapable and shared fact of our immortality, but being in an environment where people openly shared their thoughts and fears, and non-fears, on the ultimate taboo subject was enlightening and refreshing. And not in the least bit depressing…

Over the past few days, I have read some interesting and diverse pieces on death and dying.

Firstly, a systematic review by Lehto and Stein on death anxiety (http://deepblue.lib.umich.edu/bitstream/handle/2027.42/66464/?sequence=1). Death anxiety in this context is ‘a term used to conceptualize the apprehension generated by death awareness.’ An all-pervasive anxiety, I suspect, which seems to have been heightened by the technologically advanced and led world we currently live in, where anything is or should be possible, including immortality, or at the very least an indefinite postponement of death.

The aim of the study was to identify factors that contribute to or are significantly associated with death anxiety. Lack of robust data on the topic limited the power of the review to draw definitive conclusions, but, unsurprisingly, important antecendents of death anxiety appear to include ‘stressful environments and the experience of unpredictable circumstances’, as well as personal experience of a life-threatening illness/event, and with death and dying. At my table last night, we pretty much all reported such life experiences to some extent, although the apparent levels of anxiety appeared to vary within the group. A complex issue.

I also came across the writer Jenny Diski’s recent musings on death and dying (http://www.berfrois.com/2013/12/jenny-diski-on-night-and-more/). In an amusing piece titled ‘Dirty Dying’, Diski considers her personal relationship with thinking about death:

‘I’ve never understood about boredom…But how can anyone be bored when there’s always death to think about? Every day. Every hour. Don’t you? All the rest is just evading or glossing the real subject of our lives.’

While currently re-reading Anatole Broyard’s Intoxicated By My Illness, I encountered this thought-provoking reflection from a 30 year old man dying from leukemia:

‘I don’t think people are afraid of death. What they are afraid of is the incompleteness of their lives.’

Which brings me to what I most enjoyed, and which both reassured and liberated me, during and subsequent to  last night’s Death Cafe event: there was no evasion, no avoidance, but instead, for those moments there existed the real possibility of talking about death in a welcoming and open environment, where people chatted, shared and laughed about lives that include death as a (mostly) welcome and also essential component of how we live. That is not to say that everyone present was accepting and comfortable about the prospect of their own death and dying and that of their loved ones. At times, there was an almost palpable sadness and grief. But that was ok, and it was also ok to talk about such feelings. Accepting death does not preclude grief and the profound sense of loss that one experiences for those who are no longer physically present in one’s life.

I end with Pablo Neruda and his succinct conclusion on the topic in the poem A Dog Has Died:

‘There are no good-byes for my dog who has died,

and we don’t now and never did lie to each other.

So now he’s gone and I buried him.

and that’s all there is to it.’

CQ

I have been thinking about this most unique of relationships, partly in the wake of Medicine Unboxed 2013, and also as I am currently writing chapters for a book on Illness and the Arts.

Jonathon Tomlinson has written a very comprehensive and insightful essay on the notion of the ‘patient’ (http://abetternhs.wordpress/2012/04/09/whats-in-a-name/).

Here, I just want to draw attention to words from those who have expressed their experience of the patient-doctor through their poetry.

Firstly, Raymond Carver, who died as a result of lung cancer, and his poem What the Doctor Said:

‘He said it doesn’t look good

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them…’

Later in the poem:

‘he said I am real sorry he said

I wish I had some other kind of news to give you’

Carver concludes:

‘I just looked at him

for a minute and he looked back and it was then

I jumped up and shook hands with this man who’d just given me

something no one else on earth had ever given me

I may even have thanked him habit being so strong’

This is one of my all time favourite poems. It manages to say so much with so few words – the essence of poetry itself – and within 23 short lines the poem delivers such a strong sense of what the sufferer was experiencing at the ‘other side’ of the desk.

Secondly, to another poet who died as a result of cancer, Julia Darling. The anthology The Poetry Cure, which she edited with Cynthia Fuller, contains much to enlighten those who wish to gain insight into the suffering of illness.

In her poem Too Heavy, Darling directly addresses the medical profession:

‘Dear Doctor,

I am writing to complain about these words

you have given me, that I carry in my bag

lymphatic, nodal, progressive, metastatic…’

‘…And then you say

Where are your words Mrs Patient?

What have you done with your words?

Or worse, you give me that dewy look

Poor Mrs Patient has lost all her words, but shush,

don’t upset her, I’ve got spares in the files.

Thank god for files.’

Finally, also from The Poetry Cure, from Carole Satyamurti’s Out-Patients:

‘My turn. He reads my breasts

like braille, finding the lump

I knew was there. This is

the episode I could see coming —

although he’s reassuring,

doesn’t think it’s sinister

but to be quite clear…

He’s taking over,

he’ll be the writer now,

the plot-master,

and I must wait

to read my next instalment.’

The poets say it all.

I have nothing to add.

CQ

I happened upon this BBC Radio 4 drama today. Written by Morwenna Banks, who is best known for comedy such as Absolutely, this is an intense and very moving portrayal of the experience of living with cancer, breast cancer in this instance. Lizzie, wonderfully played by Olivia Colman, initially has a cancer ‘scare’, which appears six months later to have been a mistaken dismissal of a malignant tumour as benign. She proceeds to chemotherapy, and to much else, including sickness, hair loss, and all the attendant anxieties and terrors that inevitably accompany her, her family and her best friend Jen.

I was surprised how moved I was by this fictional story. It felt real, believable, and so very sad. Yet there is a redemption of sorts too, and so it does leave one with a reassuring and plausible sense that life is challenging, difficult and sometimes tragic.

And so you just get on with the whole business of it, really.

Go listen…
http://www.bbc.co.uk/programmes/b03d836p

CQ

I have come across two events over the past week where links between poetry and science or medicine have been initiated.
Firstly, appropriately at Keats House, I attended the launch of a collaborative project between poets and scientists (http://www.poetry.gb.com/BiomedicalScience). Eleven poets teamed with 11 scientists to create poetry that reflected on the life/work of the latter. At the event, both the poet and the scientist of each ‘team’ spoke about their respective experiences throughout the collaboration. The resulting poetry is wonderfully rich and evocative. It was also very moving to hear the scientists speak, and so poetically, of what the experience meant to them.

Secondly, today I came across a piece in a recent New Yorker (http://www.newyorker.com/talk/2013/10/14/131014ta_talk_singer) on poetry and medicine. John F. Martin is a ‘cardiologist, transatlantic academic, specialist in gene therapies for treating heart attacks, clinician, and published poet.’ I guess the ‘poet’ element is last mentioned in order to heighten the impact of this apparent incongruity. There have indeed been clinicians, such as William Carlos Williams and Dannie Abse, who were also published poets. But they are in the minority. I have not yet come across Martin’s poetry, but I will now seek it out.
Apart from his own poetry, Martin has also initiated an annual poetry competition for medical students both at UCL and at Yale School of Medicine. This project arose out of his concerns that ‘medical students are at risk of becoming “intellectually brutalized”…conditioned to focus upon the microscopic at the expense of the holistic.’
The competition is now in its third year, and I have been reading the work of past winners. Impressive. My favourite is Encounters with Death, by Kevin Woo (Yale University, 2012):

‘In the First Year
I gazed upon a body overtaken by Death
The fingers, withered and cold
Eyes as gray as the stainless steel casket
Call her Cadaver, they explained, and learn
Her lines, her edges…
…And in the First Year, I dissected Death.’

There is a separate stanza for each year, of four.

‘In the Second Year
I memorized the signs of Death
A lung, scarred and emptied
The nodes of Osler revealing infection within…
…And in the Second Year, I pathologized Death.’

‘In the Third Year
I saved a man from Death
His heart, so worn and weary
That it had surrendered its rhythm…
…And in the Third Year, I conquered Death.’

‘In the Fourth Year
I had a conversation with Death
Of what do you remain afraid, Death asked
That you might know Death only by dissection, as pathology, to be conquered?
And I learned that Death
Was a companion along the journey of humanity
Along which we travel
I smiled, because I understood
At last
And in Fourth Year, I accepted Death.’

A most impressive journey in just 4 years. For most of us it takes a lifetime, if we do even manage to arrive.

CQ