Archives for category: Stories

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If, like me, you thought John William’s Stoner [https://sufferingandthearts.wordpress.com/2013/12/16/stoner/] was one of the best books you have ever read, check out Train Dreams. It is a very different read, at a mere 116 pages, but Stoner was much in my mind while experiencing Train Dreams. It may well be the fact that both follow the life of one man, an alone and ultimately tragic (or so it seems to me) figure. It is also not luck that brought Train Dreams to my attention. The same person who gifted me Stoner recommended Denis Johnson’s work. Such is the magic of the reading experience. It connects people and events and episodes in ways that might not otherwise be possible.

I am not sure how much I liked the central character in both books (Howard Jacobson would probably say that the need to like characters misses the whole point of writing and reading), yet this did not stop me connecting with each and both, and with their stories of living and suffering.

Train Dreams opens with the ending of a stranger’s life:

‘In the summer of 1917 Robert Grainier took part in an attempt on the life of a Chinese laborer caught, or anyway accused of, stealing from the company stores of the Spokane International Railway in the Idaho Panhandle.’

It ends:

‘And suddenly it all went black. And that time was gone forever.’

The intervening 100 pages or so follow Grainier’s adult life, which is dominated by loss, hardship and solitude. Yet Grainier is not a victim. He lives his life as he does and must, without questioning his suffering. He does, however, ultimately release and express and share what he has been holding within, in a way that is both surprising and beautiful.

Both Stoner and Train Dreams inevitably raises questions about what constitutes a life. Certainly, a life can be told in 100 pages, or 300, or whatever length. But what Williams and Johnson, exceptionally and in very different ways have done, is to share the essence of a lived life, the somethings that touch on and reach out to a humanness in us all.

 

CQ

 

‘I probably set out to pay homage to Lucile, to give her a coffin made of paper – for these seem the most beautiful of all to me – and a destiny as a character. But I know too that I am using my writing as a way of looking for the origin of her suffering…’

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Lucile is the narrator’s mother, who commits suicide at the age of 61. From the first page, we are catapulted into the heartbreaking theme that overshadows the book:

‘My mother was blue, a pale blue mixed with the colour of ashes. Strangely, when I found her at home that January morning, her hands were darker than her face. Her knuckles looked as though they had been splashed with ink.

My mother had been dead for several days.’

The book is an exploration of Lucile’s life, a childhood overshadowed (and ‘disappeared’) by death, and an adult existence (for at times it reads as such, a non-being in the world), which was interrupted and disrupted by manic depression. It is also the story of what it was like for the narrator and her sister growing up in such an environment:

‘I am writing about Lucile through the eyes of a child who grew up too fast, writing about the mystery she always was to me, simultaneously so present and so distant, and who, after I was ten, never hugged me again.’

Shortly after discovering her mother’s dead body, the narrator, a writer, decided on perhaps the most intuitive way for her to confront and to explore the demons in her past and in her mother’s:

‘And then, like dozens of authors before me, I attempted to write my mother.’

‘Initially, once I had finally accepted that I would write this book after a long, silent negotiation with myself, I thought I would have no difficulty introducing fiction and no qualms about filling in the gaps…Instead of which, I am unable to alter anything…Unable to free myself completely from reality, I am involuntarily producing fiction; I’m looking for an angle which will allow me to come closer and closer still; I’m looking for a place which is neither truth nor fable, but both at once.’

Although the writing resulted in a ‘setting free’ of sorts, through the process ‘I grew a little further from Lucile in wanting to get closer to her.’

There are many serious and tragic themes throughout the book, including abuse, anorexia, and loss, both physical as the result of death through accidents and suicides, but also profound loss within enduring relationships.

Lucile seemed to gradually and progressively retreat from the world. A diagnosis of cancer provided the final challenge she could not face. The sentiments expressed in her final letter reminded me of an e.e.cummings phrase ‘Unbeing dead isn’t being alive’.

‘Lucile died the way she wanted to: while still alive.’

It is unclear from the book, and from interviews with the author, to what extent the story is autobiographical. It appears to be a combination of both fact and fiction. It matters little. This is a deeply affecting novel, and one which made me consider the stories into which we are all born, and the extent to which they can be rewritten.

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…

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

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 seen such great theatre in London of late, tonight absolutely included.

I rarely go to large venues these days, instead loving the intimacy that smaller theatres offer and so often deliver.

This is probably my third or fourth time at The Print Room, and as a space to visit I love it more each time. Within the building I have been entertained in different ‘rooms’ on different occasions. Tonight, we were treated to a glass of wine in a little candlelit ante room (with piano), before moving up (narrow) stairs to the performance.

The play was performed within a relatively narrow rectangular space. There are three performers, Catherine, Joshua and Simon, all of whom are present for the 90 minute or so duration of the piece. The actors were uniformly really impressive.

Simon is a psychiatrist – of the ‘old’ school, a ‘pedantic piece of shit’ as named by Joshua – who is simultaneously seeing/treating both Catherine and Joshua.

Catherine has amnesia. Simon, who has become ‘bored by suffering’, is nonetheless interested in Catherine and her psychiatric state. His goal is to ‘remove the plaster’, thereby liberating her memory. The amygdala of the play’s title is the part of the brain that has come to be viewed as the centre of emotional memory.

The story that predated Catherine’s amnesia gradually unfolds. Catherine is a middle class lawyer who lives in Hampstead with her French lawyer husband, who seems to spend more time in Paris than in London, and their two young children. Joshua’s life rests at the other end of the spectrum, as a musician (saxophone) who takes the bus rather than black cabs, and who lives a life devoid of books. Yet, a series of (seemingly) chance encounters brings Catherine and Joshua together.

As Simon works on removing Catherine’s ‘plaster’, the traumatic and tragic story behind her memory loss is revealed. Many themes and threads pervade this short work of art, all of which weave together to create a story of humanness with all its inherent and inevitable flaws, frailties and vulnerabilities.

All three characters, most especially Simon and Catherine, are alone, lonely and vulnerable. Inside, but most especially outside the courtroom, truth is questioned and sought. Amygdala is a story of need and of desire, and of the reality and consequences of love, and the living of it, that is both beautiful and tragic.

CQ

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The poster for this conference epitomises the creativity and richly imaginative content that defined the event itself.

I have attended many ‘Medical Humanities’, ‘Health and Humanities’, ‘Medical Narrative’ and such like conferences in the past. Medicine Unboxed 2013 – with this year’s theme of Voice – stands alone as something uniquely innovative and stimulating, as well as both emotionally and intellectually challenging.

The twitter (#MU13VOICE) and facebook feeds are excellent and will give you a real sense of the diversity and substance of the content. Although I could only attend the first day, I was so very pleased to have been physically present for even 50% of the entire programme.

‘Voice’ (full programme – http://www.medicineunboxed.com/2013-voice/) was presented and discussed as the poetic voice (Jo Shapcott and Andrew Motion), the patient (Rhys Morgan), the captured voice (Fi Glover, The Listening Project), the singing voice (Birmingham Medical School Choir, Melanie and Rebecca Askew), the performed voice (Bobby Baker), and the sung voice (in terms of composition and phonetics, and music as therapy, and as an end in itself).

It is difficult to pinpoint exact reasons why I found the conference so refreshing and stimulating. The absence of medical-type presentations contributed, and Sam Guglani et al.’s creative approach to all possible aspects of ‘Voice’ in terms of health and medicine was hugely impressive.

I wonder whether the audience consisted of many non-medical/non-health-care professionals. One thing that irked me was the repeated use of the word ‘patient’. It grated. Perhaps this is because I no longer work in clinical medicine. As an ‘outsider’, ‘patient’ feels like a label that attaches an otherness to those who are ill, whereas in fact, as identified by Susan Sontag, the gap between ‘them’ and ‘us’ is very narrow…

My experience of sitting outside clinical medicine left me much to consider also following the session on the ‘Medical Voice’, in which Iona Heath, Deborah Bowman, Julian Baggini and Charlotte Blease participated. A ‘crisis in empathy’ amongst doctors was highlighted here, and there was much discussion on how medical training could be improved to address this.

I have often been critical of the lack of empathy and compassion that those who are ill have experienced during the medical consultation. I left clinical medicine a few years ago, to explore medical humanities/health and humanities (not quite sure what to call it anymore), and now work as an editor for an organisation that creates books on health and illness for children. We recently advertised for a junior doctor for the role of a medical writer. I was overwhelmed by the quantity (and quality) of the applicants – over 20 junior doctors, all disillusioned by their first years in clinical medicine. Most had no intention of ever returning to the field.

I found this sad, that the system (‘medicine’, the NHS…) had somehow failed them to the extent that just a few years working as clinical doctors made them want to walk away. We are quick to criticise doctors and how they behave, which is sometimes, but not always, justifiable. Yesterday, I found myself in the unusual position of wanting to make a plea for the ‘Medical Voice’, that it might be heard and witnessed too…

My view has inevitably been tempered by my distancing. For a perspective from a doctor within clinical medicine, do check out Jonathon Tomlinson’s response to Medicine Unboxed 2013, which truly reflects a ‘Medical Voice’ that needs to be heard: http://abetternhs.wordpress.com/2013/11/23/burden/

CQ

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I saw this play at the weekend at The Roundhouse London, as part of its current The Last Word – ‘London’s first ever spoken word festival.’

And what a truly magnificent representation of the power and magic and beauty of words Wasted is. The energy, passion and dynamism of the three performers was also hugely impressive.

Written by the so very talented Kate Tempest, I have thought much about the play since, and have read and re-read the text. Wasted is word-dense, each word carefully chosen to create a piece of art that is thought-provoking, moving, sad, disturbing, funny, and all the while gripping and enthralling.

The three characters arrive on stage and address the audience directly. Immediately, one feels involved, drawn into the stories of their lives, a witness to something significant and vital:

“We wish we has some kind of incredible truth to express.”

“We wish we knew the deeper meaning.”

“But we don’t.”

“We don’t have nothing to tell you that you don’t already know…”

They speak of the city, their home, and the despondency that it and living their lives there has fostered:

“Deserted playgrounds, tramps singing on the street, bleeding gums outside the pub, takeaways and car exhausts and bodies till you can’t see bodies.”

“A city where nothing much happens except everything.”

“Where everyone is so entirely involved in their own ‘nothing much’ that they forget about the everything happening elsewhere.”

It was not always so. The trio remember their teen years, when they ‘lived without fear’, then later ‘got wasted in raves and felt Godlike.’ But as the years pass (they are now 25) “Our eyes got dimmer and our dreams got flattened”, and we “forgot what we was living for.”

They mention Tony, both individually and as a group, who, it appears, died 10 years earlier:

“So you’re lucky. Coz if you was still here, you’d have a habit, or depression, or anxiety attacks, or all three…”

Seeking change and epiphanies that don’t happen, all three are drowning in the reality of their current lives. They also realise that they no longer have anything to say to each other, only a shared and ‘wasted’ past – “we spend life retelling life and it’s pointless and boring.”

Many phrases – “All of us, regretting the decisions we never had the guts to make” – resonate and leave much to consider.

I have not yet decided how the play concluded for me. But then, there can be no definitive conclusion or ending. This is a story about life, about the challenges inherent in living it, and about the choices you can make, or choose to ignore.

“…your dreams are more than just something that came before you shook them off, your dreams are worth pursuing…”

“But you’ll never fly until you’re prepared to jump.”

“Your life is much more than getting wasted.”

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