Archives for posts with tag: Illness

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

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 am a great fan of the poet Hugo Williams.

Now aged 70, Williams developed kidney problems three years ago and is currently on haemodialysis.

In a recent interview (http://www.camdennewjournal.com/feature-andrew-johnson-speaks-award-winning-poet-hugo-williams), the poet describes how he felt when he first heard the diagnosis:

‘ “There are all kinds of reactions you go through. One is a slight sense of shame, another is depression and a shrink­ing of the world. People who have been through it before say you just have to get a grip really.

“It’s interesting why one feels shame,” he adds. “I suppose it’s because one is no longer quite the physical speci­men one was before. And also feeling ashamed at being so self-obsessed and self-pitying.” ‘

I have mentioned Susan Sontag in the context of illness here previously, and specifically how she believed that we all go through life belonging to one of two camps, either the kingdom of the ill or the kingdom of the well. Although the kingdoms are very distinct, one can find oneself suddenly in the ‘opposite camp’ following a diagnosis of serious illness. A fine line in fact divides both worlds, yet those who find themselves in the land of the ill very quickly feel alienated and isolated from those who are well.

Williams alludes to this experience:

“Sick people tend not to be with well people very much because they remind them about being ill too much. Whereas if you’re with sick people you can say, well, I’m not as sick as him.”

Poetry has to a large extent ‘rescued’ Williams, ‘because to write means going to a mental state where he is neither ill nor well.’

‘ “Poetry is like that – a place where there is no illness or wellness.” ‘

Currently, Williams has dialysis three times a week and is on the waiting list for a kidney transplant. The ‘average’ wait is three years. In the meantime, he shares his experience through his poetry:

Excerpts from ‘From the Dialysis Ward’  (http://www.lrb.co.uk/v35/n02/hugo-williams/from-the-dialysis-ward)

 ‘A Game of Dialysis

The home team appears
in a blue strip, while the visitors
keep on their street clothes.
We find our positions
from the file with our name on it
placed beside our bed.
Now all we can do is wait
for the opposition to make a move.
We don’t like our chances….’

‘The Art of Needling

You find out early on
that some of the nurses
are better than others
at the art of needling.
You have to ascertain

who’s on duty
that knows what they’re doing,
someone familiar
with your fistula arm
and beg him to ‘put you on’….’

‘Diality

The shock of remembering,
having forgotten for a second,
that this isn’t a cure,
but a kind of false health,
like drug addiction.

It performs the trick
of taking off the water
which builds up in your system,
bloating your body,
raising your blood pressure.

It sieves you clean of muck
for a day or two,
by means of a transparent tube
full of pinkish sand
hanging next to your machine.

Your kidneys like the idea
of not having to work any more
and gradually shut down,
leaving you dependent.
Then you stop peeing.

Dialysis is bad for you.
You feel sick
most of the time, until the end.
The shock of remembering,
having forgotten for a second.’

CQ

This was the question posed at Cafe Scientifique, at The Royal Society tonight.

The speaker was Dr Matthew Piper, from the Institute of Healthy Ageing, University College London, who initially spoke about his research, which was then followed by an open discussion with questions.

Dr Piper’s research focuses primarily on the effects of nutrition on healthy ageing. First, he gave us a very comprehensive, and understandable, overview of where the hypothesis for his work originated.

The process of biological ageing appears to result from the (complex) interaction between our genes and our environment. Manipulation of environmental factors, although intuitive (for example lifestyle and cigarette smoking), does not appear to consistently influence longevity, and it seems increasingly more likely that genetic predisposition is the key. In 1977, a study in worms first demonstrated that a specific genetic mutation increased lifespan.

Research since then suggests that levels of insulin signalling seem to influence the process of ageing. The most accessible and realistic way of advantageously influencing these levels is through dietary intervention, specifically caloric restriction (it also appears that protein restriction is beneficial, but this may be specific to some amino acids, the details of which are currently unclear). Thus diets, such as the currently popular 5/2 diet (five days normal eating, two days restricted eating/fasting) that cut back significantly on caloric intake appear to turn off pathways when you do not need them (this applies to adults only, not children). A small amount of nutrients then appears to maximise the efficiency of the signalling pathways, without overloading them.

This, my reductionist summary, appears to be the scientific basis to current research that explores the biological causes of ageing, rather than ageing itself. The rationale appears to be that an understanding of the biology will help, not the symptoms of ageing per se, but the illnesses that partly, but not inevitably, define the process.

The science is fascinating, and I suspect I was not alone in the audience as I considered what I can do to positively influence my own ageing process…

However, I do have an issue with the medicalisation of ageing. To me, it is a natural and inevitable part of living beyond a certain biological age. Tonight I was confused at times as to whether we were talking about longevity (and I am not convinced of the value of this) or about ultimately decreasing age-related morbidity. Little was mentioned about quality of life.

I also worry that, given the fact that the elderly often feel invisible and neglected in society today, turning our attention to increasing lifespan may distract us from the non-medical issues that face our ageing population, such as isolation and social vulnerability (https://sufferingandthearts.wordpress.com/2012/06/02/gv-art-the-art-and-science-of-ageing/).

My question following tonight’s most fascinating discussion is not whether growing old is an illness. Instead, I turn to the issue of increasing our lifespan, and question why that might be a good thing…

CQ

This stimulating and thought provoking evening was presented by Poet in the City in collaboration with Medicine Unboxed.

I had not previously come across Medicine Unboxed, which ‘explores a view of medicine that exceeds the technical: one elaborated by the arts, philosophy and the imagination as much as science, and one that insists on care and human understanding as much as treatment’ (http://www.medicineunboxed.com). I will certainly follow their activities from now on.

The session was chaired by Dr Sam Guglani, a clinical oncologist and curator of Medicine Unboxed. The panel consisted of poets Jo Shapcott, Jane Draycott and John Burnside, and Dame Sheila Hollins, Emeritus Professor of Psychiatry of Disability.

I have thought much about the evening, both the poetry, the discussions that took place, and the questions that arose from the audience.

What impressed me most was the wide ranging and ambitious directions the discourse took. Narrative Medicine, Medical Humanities, and other such disciplines, have become much more familiar today, and I embrace them and what they do. Yet I also wonder whether discussions on poetry and medicine, or arts and the experience of illness, need to spend time outside their institutions too, within a broader context of empathy and compassion within society as a whole. Idealistically perhaps, I believe that this is the only way we can alleviate the isolation and loneliness of those who are ill, and who suddenly find themselves resident in another world.

I therefore welcomed the emphasis John Burnside placed on our compassion towards animals, as to all living creatures, which we increasingly erode.

I have been wondering whether compassion is strictly intuitive, innate, or whether it can be ‘taught’. I have also wondered whether you have to personally experience suffering in order to be compassionate, and as a corollary, to be capable of empathy.

I would have hoped not, but I am not so sure. I do believe, that to be alive is to suffer, not in any penitential sense, but the very nature of existing necessitates a suffering of sorts, to a greater or lesser extent, which of course applies to health care professionals as much as it does to everyone else. Whether this suffering is acknowledged and ‘felt’ perhaps separates the compassionate from the (apparently) non compassionate.

I enjoyed last night’s session very much at the time, and in its aftermath, there is much to reflect on, and to consider.

CQ

Wednesday, July 4, 2012

I first came across Jo Spence’s work a few years ago, while researching visual depictions of the suffering of illness.

Jo Spence (1934-92) was a key British photographer, particularly of the 1970s, a socialist and feminist, whose work has been central to issues and controversies in representation and photography. Later, self-portraits of her experience of illness, breast cancer initially followed by leukaemia from which she died, which were personal representations of a fight both against the onslaught of bodily illness and the medical system, in particular created a powerful record and legacy of her unflinching ability to shock and to provoke through her art.

Currently, the SPACE gallery and Studio Voltaire, London, on the twentieth anniversary of her death, are celebrating Spence’s life and work, with the latter exhibition (Part 11) focusing on her experience of illness. It is a comprehensive display, and deserves much time to dwell and to absorb, and includes photographs, collages, news clipping, video recordings, as well as many books by Spence, that require time to sit and to read, not merely to flick through. I gained most from seeing Jo Spence on the screen, softly spoken and thoughtful, and to some extent I was unprepared for this, as much of the surrounding images and self-portraits speak of anger and of outrage.

Spence was critical of the medical profession from the moment of her diagnosis, of the ‘young-coated doctor’, who, without introduction, inked the flesh of her left breast, preparing, without asking, for its removal. Spence returns again and again to the imbalance of power in the doctor/patient relationship, and how the medical profession infantilises the sufferer. Spence chose not to go down the mastectomy route, instead opting for a lumpectomy and alternative health strategies. She felt that she needed to regain control of herself, of her body, which became vulnerable and fragile and ‘other’ from the moment of diagnosis. Her photographs portray this, ‘property of Jo Spence’ vs. ‘Hospital property’, as she seeks to re-possess and regain control of her bodily self.

The alternative route that Spence chose included an exploration of veganism, iridology, TCM, and photo therapy, all of which helped her address her identity, namely that of a person with cancer, rather than one defined and labeled by a diagnosis and by illness.

In one frame she asks ‘How do I begin to take responsibility for my body?’ I am not sure we ever truly do. Our bodies are mostly silent, and ignored, until something goes wrong. The bodily breakdown that often accompanies illness is hard to ignore, and it must be even harder, I imagine, to ignore and to deny offers of medical treatment that might ‘restore’ the body to something more familiar. Spence’s decision was brave, as are the photographs that depict this journey, which was often, she acknowledges, a lonely one. The body of work The Picture of Health? clearly reveals Spence’s vulnerability, particularly when we see her undergoing a mammogram, her naked breasts imprisoned by a machine.

There is perhaps too much to see here and to absorb in a single visit. A profound sense of battle, of Spence’s fight against cancer, the medical establishment, cancer treatments, and her body presented to us as a war zone, makes the experience not an easy one for the observer. But then, why should it be otherwise… Spence was brave and humble enough to share her experience, and to leave a personal record of what it was like, with disarming honesty. The very least we can do is to bear witness, and to consider what is laid bare before us.

Jo Spence: Work (Part 1)

SPACE, London, to July 15

Jo Spence: Work (Part II)

Studio Voltaire, London, to August 11

CQ