Archives for posts with tag: Suffering

Although long aware of the Irish author Niall Williams, I had never read any of his novels. The arrival of his current book History of the Rain prompted me to explore his earlier work.

I started with Only Say the Word, and loved it, finishing it in less that 24 hours. It feels as if every book this year reminds of another author’s work, coincidentally also Williams, John, and his novel Stoner, which I have previously spoken about here [https://sufferingandthearts.wordpress.com/2013/12/16/stoner/]. Only Say the Word and Stoner are very different, but they do share a common theme of following one man’s life, and the influences and events that impacted on the life in question. In addition, both John Williams and Niall Williams are masters of a style of prose that seduces the reader willingly and complicitly into the life of the protagonist.

Niall William’s narrative tells the story of Jim, opening with the words:

‘I do not know what to write. There have been so many words written already. So many endings and beginnings. I have lost my faith.’

We are immediately introduced to the acute cause of Jim’s sadness, which is the loss of his wife Kate, mother of his young children:

‘And so I sit here, and feel your absence and wonder how to begin to live without you.’

As Jim commits his story to the blank page, his life up to now is revealed. We learn of his childhood in Ireland, with his devout mother who seemed to exist in a haze of sadness, his kind but distant father, his genius and troubled brother, and his baby sister Louise. It is a relatively calm and untroubled childhood, until:

‘And in that same passing of time, the same even measurement in which one moment seems identical to the next but is not, our life is struck and falls apart.’

Tragedy happens, from which nobody truly recovers. Jim partly blamed himself, as children tend to do, and it was not a family where such feelings were expressed or acknowledged:

‘In our family we are each like boats slipped from the moorings, out in deep water, and utterly separate or tangled in our own nets of grief and loss. We live together in the house but are each alone.’

Jim copes by escaping, initially through books and reading, and later physically, when he leaves school.

We follow Jim’s life, and his attempt to make sense of it as he commits the telling of it to the page. Jim is a more accessible character than John William’s Stoner, yet that is not the point. Liking someone is not critical for empathy, which only demands an authentic emotional connection with the suffering of another. Jim (and in essence Niall Williams) goes a step further. By sharing his story, and in particular the redemptive possibilities of caring and of love, hope is ultimately acknowledged and embraced.

 

CQ

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Descent from the Cross

The German artist Max Beckmann was born on this day, February 12, 1884.

Beckmann suffered for his art, his work ultimately labelled ‘degenerate’ in his homeland by Hitler and Nazism. Forced to leave Germany as a result, he lived in relative poverty in Amsterdam for 10 years. Finally, his visa for the US materialised. His fortunes improved in America, but he died within a few years, in 1950 at the age of 66, from heart disease.

Descent from the Cross intrigues and fascinates me. It epitomises the notion of (almost) unbearable suffering, where others, although present, cannot truly bear witness, and avert their gaze. Christ’s body, although pale, emaciated and wounded, seems perversely supersized, as if to emphasise that suffering, represented by perhaps the ultimate icon of human suffering, can overshadow and overwhelm that which it encounters.

CQ

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

The medical historian, writer and poet Professor Joanna Geyer Kordesch led the research project ‘Stories and Cures: Illness and the Art of Medicine’, which was undertaken at the Scottish Storytelling Centre. The day before she was due to present the findings at the Scottish Storytelling festival, Kordesch herself suffered a serious stroke. In this video http://www.youtube.com/watch?v=uskmAr18wSs she shares her experience of the aftermath of the event, offering a unique insight into both her academic expertise on the subject of storytelling and illness, as well as her own personal experience as an illness sufferer.

The time from her near death experience to anything approaching normality has been a relatively long one for Kordesch. Along the way, no one could advise her on a recovery trajectory or a possible prognosis. The long and slow wait for return of function is a subjective experience, and one that is unique to each stroke sufferer. Thus, Kordesch stresses the word ‘individualised’ throughout the discussion: she sees her stroke as an individualised condition, and how she has endured it as an individualised experience. Although her experience has inevitably been different to those of others, for all those affected by illness and disability, Kordesch suggests a facing up to one’s symptoms, focusing on living through the condition (as opposed to trying to eliminate it), which can be in itself ultimately liberating, not only for the sufferer but also for healthcare professionals.

The complexity of influences, all of which interact, that arise from serious illness are unique to the individual, and include not just the physical but also the impact of imagination and of feelings. With her academic expertise on the experience of illness in the context of culture and philosophy, Kordesch speaks of the romantic era, pre medicalisation of psychological issues and psychiatry, when expression of one’s imagination, dreams and feelings were allowed and encouraged.

Since her stroke, her creative side – art and poetry – has become increasingly important to Kordesch, which allows her to tell her own story rather than using those of others. She stresses the importance of storytelling for one’s wellbeing, as an opportunity to explain and to experience ways of dealing with illness and disability.

Kordesch’s experience reinforces her belief that people need to be seen, particularly by doctors, as a whole rather than merely as their disabled/ill parts.

Kordesch acknowledges that her illness experience has added something to her life, and she now finds that she is more attentive to the world that she lives and recovers in.

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

This is the title of a documentary film that I saw today, the final day of the UK Jewish Film Festival, at the Tricycle cinema.

What a cinematic gem it is, a profoundly moving and authentic piece of art, which is so affirmative, and reassuring, of the goodness that humans are indeed capable of. And more importantly, a goodness and a genuine caring of the other, which transcends that most divisive of forces, religion.

The film tells the story of Albanian Muslims who protected Jews from the Nazis in WWII. Unlike almost all other countries, Albania welcomed Jews during the Holocaust, and we hear the stories of some of the very many Muslim families who sheltered the refugees, despite the inherent dangers to themselves, as well as the those of the Jewish people and their descendants who, as a result of the humanity they received, managed to survive the war.

Albania was the only country where the number of Jews increased from pre-war, approximately 200, to post-war, approximately 2000. It remains a relatively poor country.

Albanians see themselves as just that – not as Muslims or Orthodox or Christians – but as the people of Albania, and all of whom share and enact Besa, an honour code that offers assistance to all those who knock on their doors looking for help.

Besa: The Promise is a gripping and humbling story, which concerns a nation that lost so much during WWII and even more so in the subsequent communist years, but which nonetheless holds steadfastly to the notion of kindness and and generosity towards those in need, irrespective of religion and creed.

CQ

As I write, I am listening to Tavener’s music, some of which I have found relatively impenetrable, but much of which is sublime.

Tavener died earlier this week. He had Marfan’s syndrome, which explains his ‘ethereal thinness’, and had a long history of illness, including a heart attack six years ago from which he almost died.

Tavener recently commented that he had lived longer than anyone, including himself, had imagined possible.

He was 69.

Today, I listened to what came to be his final radio interview, which took place last month from his home in Dorset with Radio 3’s Tom Service (http://www.bbc.co.uk/programmes/b03hk1y9).
In the interview Tavener, who sounded frail, spoke of his physical suffering, and also of his spirituality within the context of such suffering, which constantly informed his writing and his perception of life.
For Tavener, in the context of not knowing what comes after death, faith and doubt co-existed. Such non-knowing necessitated a humbling of the mind, and Tavener, who was deeply religious, believed that life and death, doubt and darkness, all existed alongside each other.
Illness, and particularly the almost fatal heart attack six years ago, facilitated a renewed seeing of the world and 0f Tavener’s place within it, with an enhanced clarity.
Rather than escaping from suffering through his writing, Tavener, throughout his life and career, chose to deal with issues such as death head-on. Thus, his music was informed by suffering, but, perhaps perversely, the creativity thus produced served to energise.
Of late, his music, as stated by the artist himself, became more terse and austere. He expressed a wish to be remembered as an austere composer.
God returned to Tavener in a distinctly different way following his heart attack. This was no longer an external deity, but an internal one. Since then, every piece he wrote was informed by this, and by via negativa – ‘where there is nothing, there is God’.
In recent years, as illness escalated, Tavener felt much closer to the non-knowing, and faith became more complex for him, and much influenced by pain and suffering.
Pain significantly affected his capacity to work, struggling of late to work for more than two hours at a time. Tavener believed that his last pieces were particularly important, not least because of the physical effort they involved. When unable to work due to illness, he described such times as days of darkness. When he could work, a divine darkness was alive within.
Tavener quoted Tolstoy, who believed that one had to suffer to be heard as an artist. The composer clearly subscribed to a similar view.
I was impressed and moved by the clarity of Tavener’s vision himself, and of his life and work. Tom Service commented at the end of the interview that, despite the seriousness and darkness of the topics that Tavener spoke of, the composer smiled as he spoke. Tavener concurred, and laughed at this observation…
CQ

‘I saw three ships go sailing by,

Over the sea, the lifting sea,

And the wind rose in the morning sky,

And one was rigged for a long journey…

…But the third went wide and far

Into an unforgiving sea

Under a fire-spilling star,

And it was rigged for a long journey.’

from Philip Larkin’s The North Ship

The word ‘suffering’ in the title of this blog is intentional and deliberate. However, I am aware that my interpretation of what suffering means may well be at odds with that of others. For me, I see my voyage through life as one demarcated by many diverse and rich experiences. But, as Larkin reflects, life itself is ‘an unforgiving sea’, and living it involves many obstacles and challenges that interrupt and disrupt the passage, a passage where suffering sits equally alongside all other emotional experiences.

Religion, particularly Catholicism, has historically appropriated, and plagiarised, the word. And so, ‘to suffer’ has come to additionally assert some kind of penitential meaning, a necessary experience to be endured for atonement of sins committed.

I am reclaiming the word in a purist and secular sense. I argue that suffering belongs with all the other subjective experiences that define our humanness, all of which contribute to the final sum of what it is to experience life and the living of it, and ultimately what it is to be one’s self.

A friend drew my attention today to a current piece in The New England Journal of Medicine, ‘The Word That Shall Not Be Spoken, by Thomas H. Lee (http://www.nejm.org/doi/full/10.1056/NEJMp1309660).

The word referred to in the title is indeed ‘suffering’. The author considers how physicians tend to avoid the word, judged as being ‘a tad sensational, a bit too emotional.’ He discovers that academic journals and textbooks similarly avoid it. When Lee asked colleagues why they avoided using the word ‘suffering’, one of the comments was that it was not ‘actionable’ for clinicians, which in turn reminded them of their powerlessness.

‘And it makes us feel guilty. Suffering demands empathy and response at a level beyond that required by “anxiety,” “confusion,” or even “pain.”

Thus, the word ‘suffering’ tends to be avoided by the medical fraternity, even though it may most accurately reflect what the patients they are caring for are actually experiencing.

Lee proceeds to discuss the alleviation of suffering, and here our views diverge. Undoubtedly, we cannot be complacent about the suffering of others. However, I believe that the critical first step as compassionate human beings, is to allow for the expression of suffering as an experience that is an inevitable accompaniment of life and living, and to acutely bear witness to what that lived experience is, for others, and for ourselves.

Only then, can we start to consider how it might be alleviated.

CQ

Ahead of tomorrow’s announcement, I am finally getting round to a post I have been planning for some time.
I initially set out to read all the Booker Prize longlist, but had only managed six before the shortlist was announced. Of these six, only one made it to the shortlist, which was Colm Toibin’s The Testament of Mary.

I had not been tempted to read this particular book from Toibin before, despite the fact that I have read many of his earlier works, and loved them. Perhaps my strong atheistic leaning put me off. I mentioned the book and its underlying theme to my teenage daughter. Her immediate reaction was ‘what a clever idea’.

A slim book, the page length of The Testament of Mary is deceptive. This is not a quick read. There is much to consider in every paragraph, in every sentence of the single chapter story. Mary’s voice and thoughts guide us through the narrative, which is predominantly one of loss and suffering as she mourns the life and death of her son.

“…I have forgotten how to smile. I have no further need for smiling. Just as I have no further need for tears.”

Very much the story of a mother’s loss and unrelenting grief, which is the book is indeed a clever and surprising take on the ‘traditional’ story of Mary, of her son, and of his death on the cross. I have no idea whether Toibin intended the book to have religious undertones or not.

For this atheist, I found it deeply moving as a lingering and insightful narrative about the humanness of suffering.

“It was a strange period during which I tried not to think, or imagine, or dream, or even remember, when the thoughts that came arrived unbidden and were to do with time – time that turns a baby who is so defenceless into a small boy, with a boy’s fears, insecurities and petty cruelties, and then creates a young man, someone with his own mind and thoughts and secret feelings.”

CQ

Japan is a country famous for suicide (http://www.newyorker.com/reporting/2013/06/24/130624fa_fact_macfarquhar). Its many suicide spots have become tourist attractions, including the Aokigahara forest, the Sea of Trees at the foot of Mt. Fuji, where bodies can lie undiscovered for months, and where tourists come to photograph corpses and to scavenge.

There is no religious issue about suicide in Japan, unlike in the West. On the contrary, the act of suicide is usually seen to restore honour, and is viewed more as a constructive than a destructive act.

A Japanese Buddhist monk, Ittetsu Nemoto, has set himself the task of confronting his country’s suicide culture. He conducts death workshops for the suicidal, where those affected are encouraged to imagine how they might feel if they were unexpectedly given a cancer diagnosis, with only three months, one month, one week, or minutes, to live. Within this imagined scenario, participants are challenged to consider how they might spend the limited time remaining in their lives. This approach, which encourages a shift of focus away from the desire to end life to a consideration of the act of living, appears to be both cathartic and therapeutic.

Nemoto did his training in a Rinzai Zen monastery, which was particularly rigorous and harsh – ‘Apprentice monks are treated like slaves on a brutal plantation’ – and seems to have had all the components of both extreme physical and psychological suffering. Few trainees manage to complete the programme. The aim of the training process is to eventually achieve a throwing away of the self, thereby ultimately discovering who you really are:

‘A well trained monk, it is said, lives as though he were already dead: free from attachment, from indecision, from confusion, he moves with no barrier between his will and his act.’

Nemoto is now abbott of a temple that is much less austere. Priests drink, smoke and marry, a deliberate move to ensure that they are not distancing themselves from their community.

In his work with those who feel suicidal, Nemoto advocates confronting rather than avoiding the fact of death. He has succeeded in opening up talking about dying, in a country where so many choose to kill themselves, and where notions of ‘talking therapies’ are far from commonplace. Nemoto has learned much about his own suffering since he embarked on this project. Initially, through his practice of Zen listening, he found that he became overly involved, and was deeply affected and distressed by every story he heard. He felt responsible for all those whose suffering he witnessed. He became seriously ill, with heart disease, and had to temporarily withdraw from the project. He was deeply shocked when his followers appeared to have no interest in his ill health, and persisted in seeking his help for their own needs, rather than enquiring about his. Nemoto felt he was dying, and that nobody cared, despite all that he had given of himself.

However, through this period of personal suffering, Nemoto discovered another truth: too much should not be weighted on the act of helping others; rather than it being something special or significant, helping others should be something one naturally does in the course of one’s life.

Today, following his recovery from illness, Nemoto only reaches out to those whom he physically meets. He no longer communicates by mail or email. As a result, those affected often have to travel very long distances, and need to be very committed, to seek him out in his temple. He interacts with fewer people, but Nemoto feels he achieves more. He also takes notes when listening to those who come to see him, an approach that has allowed him, he believes, to distance himself sufficiently from their distress and suffering. He also believes that such distancing has facilitated greater resolution for those he attends.

Nemoto ‘believes in suffering, because it shows you who you really are.’ I believe that to live, to truly exist, is to suffer, not in a penitential sense such as Nemoto might have experienced in his training, but in the sense that personal suffering, however one likes to interpret it (and it is a subjective experience in the end), is inextricably linked to living and to humanness.

Taking on the suffering of others, as Nemoto learned, can be a destructive and not altogether helpful act. Empathy, and the capacity for being there for the other, does not necessitate such…

CQ