Memories of Dying

My mother died young, she was only 53. From the first visit to the doctor for swelling in her tummy to her death was only six weeks. She had cancer. The doctor sent her to hospital where they took a sample of fluid from her stomach and found cancerous cells. They opened her up and found there was nothing they could do; she was riddled with tumours that were strangling her digestive system. They drained her stomach and made her as comfortable as they could and sent her home. They recommended food with high fibre to stand a better chance of keeping her digestive system working and they gave us morphine to administer when she was in pain. They didn’t tell her she had cancer. They didn’t tell her she was dying. And she didn’t ask. They didn’t tell us what was wrong until my father insisted on knowing the prognosis and was told she had only a short while to live.

This happened in 1977 and often since then I have wondered whether or not the scientific advances in treatments of cancer in the intervening years could have prevented her death or at least have extended her life and that made me sad. She died too early in more than one sense of the word. But now on reading  “Being Mortal” by Atul Gawande I have for the first time re-framed her last weeks and thought again about the kind of death she did experience. It is probably true that today she may have had an operation that might have lengthened her life by a few weeks or possibly months, but now I wonder what she might have lost if she had been offered that possibility.

After a week in hospital my mother came home and life went on. And instead of giving control of her life to the doctors and the nurses, she had freedom. Freedom to decide what to wear each day and this brought her delight as we took her shopping for new clothes to fit her fading body. She had control of what she ate and when to eat it. She chose to continue to cook my father’s lunch as she had everyday of their 34 years of married life. She decided when she went to bed and when she got up. She was able to maintain her privacy and her dignity. She had the freedom to decide what those last few weeks of her life would be like, to decide what made life worth living for her.

It turned out that she didn’t ask for much. She liked having her own things around her, she liked having a purpose to her days and she did things she wanted to do. Ordinary things like going next door for a coffee, inviting her sisters over for tea, listening to her favourite music, and even finding a passion for Mozart, something she had never listened to before. She said she found it spiritually uplifting and consoling; the human passion for new experience was strong even when so close to the end.

She concentrated on spending time with her family. I visited her 3-4 times a week with my ten-month old daughter, my brother popped in each day. She spent hours pouring over the photo albums remembering and reminiscing over her life. This might sound like we all knew and accepted what was happening, but we never discussed the fact that she was dying. I lived in dread each day that she would ask me and I wouldn’t know what to say, but she never asked, it was never discussed. We all kept the secret. When she died I felt regret about that and wondered whether or not she knew she was dying. I was to discover that she did know. Her neighbour told us that two days before she died she had visited her for morning coffee and took some apple pie round. My mother was famous for her apple pie. She put it down to having “cool hands, perfect for pastry.” On this occasion she announced, “He’ll never have apple pie like this again.” And so revealed that she did know the end was near. Did she want to spare us the agony of talking about it, or, and more likely, it was just a habit of a lifetime – we never talked about anything deep or emotional in our family. All I know is that in those final few weeks when she knew she was nearing the end of her life, she shifted her horizons to everyday pleasures and the people she was closest too.

And what if she had stayed in hospital, what then of her need for everyday comforts, for the companionship of her neighbor, the chance to have her sisters and her mother and father, her children and husband pop round and visit. Sure they would have visited her in hospital, but at home she was the host. She produced tea and cake and got out the photograph albums and recalled her memories. I remember one particular day in her last week when she was dancing and singing to her favourite musicals. As the strains of ‘Carousel,’ ‘Seven Brides for Seven Brothers’ and ‘South Pacific’ filled the living room it conjured up childhood memories for me. I knew the words of all the songs and joined in the singing. I recall my small daughter, not yet walking bouncing up and down to the music and the pleasure this had given my mother. If she had been in hospital or even in a hospice she would have been denied that freedom. The focus of staff would have been on the procedures of the hospital, the monitoring of her body, the administering of medicines – all the routines and practices that accompany institutional life, that is merely a life on hold. At home she was able to decide what was important to her. When the pain became too much we administered the morphine and whilst I recognize part of her euphoria in her last days was drug-assisted, I don’t have a problem with that.

And yet I know that if we had been offered the hope of extending her life with an operation, to maybe remove part of the tumor, followed by chemotherapy and radiation, we would probably have taken it. We would have grasped a medical solution to an unfixable problem and I am now thankful we weren’t offered that opportunity. Treating an untreatable illness has consequences that I wouldn’t have known about if we had gone down that route. Instead of being tied to a hospital bed with tubes and monitors and machines, my mother had the chance to live those last few weeks on her own terms. She had the chance to make her last days mean something, to take comfort in simple pleasures and routines. That month of March at home saw the beginnings of new life in the garden and she delighted in the crocuses and daffodils coming up in the garden. Her pleasure in her new grandchild, the knowledge that life goes on.

So now, 38 years later I have taken some time to re-think the last few weeks of my mother’s life and I am so glad her fate was not put in the hands of doctors seeking only to prolong her life for a short time, and with this as their priority, not considering how she might want to live her last few weeks. I now consider she was lucky. She didn’t die in hospital attached to machines sustaining her organs beyond the time her body was able, unconscious but still breathing. Instead she died in her bed at home in private with her family nearby; she was saved the indignity of being unplug and de-tubed and switched off. She had the chance to say, “I’m sorry,” even though I have never been sure what she was sorry for. She had enjoyed autonomy, free of hospital rules and regulations; she was the author of the last days of her life. She wrote her own ending and I am very thankful for that.  

I have learned something important from this reflection and that is there are other priorities than merely seeking to prolong life. We should seek to relieve pain and suffering not prolong it. We knew at the time that the doses of morphine we administered probably shortened her life, but we wanted to prevent her suffering, relieving her pain gave her the chance to achieve what she wanted, what was important to her at the end.

Maybe modern medicine can extend the length of our lives, but that should not be our only priority. Gawande tells us that doctors today are reluctant to tell patients when their illness is not curable, and more than 40% of oncologists say they offer treatments they believe are unlikely to work. And we clutch at straws – do something, fix something, make it go away. We had no discussion with my mother on the subject of dying, we didn’t ask her how she wanted to spend the last days of her life and we weren’t offered any choices and so we took her home and that’s where I think most of us would say we want to be when we die.

I hope that if I am faced with terminal illness that my doctors and my family are honest with me, and give me the chance to discuss my end-of-life preferences. And although we never did discuss this with my mother, I now feel sure that she did in fact get what she wanted and I wouldn’t want to change that. What I would change for me is having a chance to discuss what I want. I want to the author of my life for as long as I am able and that means those around me should be prepared to talk about it – I was not brave enough and I regret this now. I think we are all afraid of death, even those with hopes for an afterlife, which I don’t share, but when it comes and if I know it is coming, I want to face my mortality and have the chance to express my hopes for the time I have left. And I want my family to help me achieve what is feasible. How we end our lives is the end of our personal stories and we should be given the change to carry on shaping those stories right up to the end for it is the end of the story that tells us how to evaluate the story as a whole – it is important, too important to be left in the hands of doctors alone.

Numbers Rule OK?

“Not everything that counts can be counted. And not everything that can be counted counts.” Albert Einstein

A head teacher friend of mine has a problem. The government in Wales has decided that the results of the Year 5 tests in mathematics, reasoning and reading for each child should be plotted on a continuum and sent home to parents. The continuum has 100 in the middle – the average child. Average apparently spans from 85-115, below 85 is below average and it follows that above 115 is above average. Each parent gets the printout with three crosses placed on the continuum to represent their child’s position in relation to all the other children of their age in Wales. So now each parent knows – their child is ‘above average’, ‘average’ or below average’ and by how much. Where would you like your child to be placed? As you might expect a number of parents are worried about the place on the continuum that their child, on the basis of three tests, sits. Especially as these are high-stakes tests, these numbers will be a major determiner of which set they are placed in when they go to the secondary school and research tells us that once placed in a set it is very hard to move out of it.

Numbers are not like words, which require interpretation. Numbers are a source of authority that purports to reveal truth. Never mind whether they actually do so or not, the way they are presented gives them the status of certainty, of factual information, of reliable evidence. And such ‘truth’ surely cannot be disputed. Unsurprisingly the majority of parents think the numbers assigned to their child tell them something factual about that child.

Stop for a moment and reflect – do you believe that the most important things in life can be measured? How about friendship? Could we assess our friends and assign them a number according to how good a friend we thought they were? What about our parents? Our closeness to our children or other loved ones? If we did decide to measure such things against a set of criteria and come up with a number surely it would make us feel uncomfortable. It would undermine the human feelings that are so dear to us.

On the other hand the pursuit of excellence does require some form of assessment of quality.  It is true that if you can’t measure something you can’t improve it and measuring is a fundamental component of human life, to reject measurement would be impossible. So we need to measure – but there are many things we refuse to measure and for good reasons. We would, for example, find it odd to measure the beauty of the natural world and then decide which is better by assigning them a numerical value – the Grand Canyon or Victoria Falls, maybe the Lake District. Or using numbers to decide which has more value, a painting by Picasso or a sculpture by Henry Moore. Such measurement is nonsensical and we immediately see that.

Could it be that we are so obsessed by measuring in education that we are confusing what we can measure with what we cannot?  Confusing what we truly value about human beings with what we can measure? We need to sort that out. Then, having decided what we can measure, it is only too easy to be seduced by numbers and forget that there are good and bad numbers. Remember the saying, ‘There are lies, damned lies and statistics’? Numbers are influential; they shut down arguments and stifle political and social discussion by claiming to provide incontestable facts. We all trust people with numbers – even when we recognize how easy it is to fudge data for all sorts of purposes, even though we know numbers can be manipulated and misrepresent the world they seek to describe, even though we know there is widespread cheating on the tests by school leaders – numbers, simply because they are numbers, are taken to be correct.

First, we need to sort out what can and cannot be measured, and secondly we need to look carefully at what we decide to measure and make sure the numbers we use are valid. Perhaps most importantly we need to consider how the presence of numbers, good and bad, influence how the stakeholders in schools – the pupils, parents and teachers – behave and what they believe. Numbers have the power to affect how we carry out education in our schools. In an era of data-driven decision making it is important to question the data we are collecting and the status we give to it.

Let’s get back to my head teacher friend. She has to deal with the parent who demanded to know why their child is ‘above average for mathematics and reasoning, but only average for reading’. They want to know where the school has gone wrong – he is clearly a ‘bright’ boy, this result must be the fault of the school.

Unfortunately this illustrates only too sadly that in education numbers influence everything we do and this can negatively influence the educational lives of many pupils and their teachers. What about the self-fulfilling prophesy of telling a child she is ‘below average’ and the impact this might have on her self-efficacy and self-esteem?

To help me think about this I turned to Professor Lorenzo Firamonti, a leading political scientist whose latest book, ‘”How Numbers Rule the World” draws our attention to the fact that measurement, expressed as numbers have become the driving force behind our social, economic and political decisions. Numbers, whether they are right or wrong influence our behaviour and that of the people around us. If we apply his arguments to education we can see how it has become dominated by the production of numbers to assess the quality of our children, our teachers and our schools and to guide the placement of children in ability groupings. Numbers drive school policy-making and guide development plans. Numbers have increased bureaucracy for everyone in schools. It’s time to unpick the impact of numbers on our educational system and ask if it helps improve the quality of education for all our children. At the moment it is numbers that decides what makes a good school and activities designed to improve those numbers dominate the thinking of all involved from the parent complaining, to the head teacher to the Director of Education in the Local Authority.

No one can doubt that the numbers we attach to students are powerful and exert enormous influence on the behaviour of schools. Schools are rated on the basis of test and examination results; in a market economy they have to compete with one another for pupils, it takes a brave school not to focus on preparing children for the tests. Test results are seen as key indicators for a ‘good school’. This has some predicted and unpredicted side effects. Schools are expected to show progression for each child and in primary school the magic number is Level 4B in English and Mathematics in year 6. These targets inevitably influence how teachers respond to the pupils in front of them leading to extra focus on those children who are borderline in the desired grades. A focus on some students inevitably means the neglect of others as research on secondary schools has established.

Secondary schools are judged by the percentage of GCSE A*-C grades, including mathematics and English, their students obtain. In this context it is the C/D borderline students have more money spent on them and their teachers spend more time planning interventions to maximize the number of C grades. Teaching becomes strategic as teachers teach to the test; learning becomes strategic as pupils are encouraged to only do what is necessary to pass the test – what becomes of deep learning in this scenario? What matters is passing those examinations, no matter if the knowledge gained is short-term and surface learning, that students acquire information rather than understanding.

When numerical reasoning is systematically applied to the world of human interactions in this way it has all sorts of unintended side effects. What about the impact on teachers whose stress levels and unhappiness are linked to the loss of autonomy, social status and professionalism? Many teachers are leaving as a result of the increased monitoring, evaluation and sheer bureaucracy

Firamonti laments that, ”The complexity of social relations is lost through the cracks of mathematical algorithms.” My head teacher friend is not prepared to sacrifice her commitment to social relations, to the quality of interaction between the children and teachers in her school, to prioritizing the understanding of each child as a unique human being with multiple interests and talents to the demands of numbers. The children to her are not merely a set of crosses on a sheet. She wants her school to be an ethical institution where the people in it listen to each other, where relationships are nurtured, where differences are valued, creativity is encouraged and thinking is promoted. And that means mixed ability teaching. This is not an either/or – her results are also good, but I believe such results arise from the creation of a happy, productive environment where children are encouraged to think their own thoughts and come up with their own ideas and as a result love learning and are not made to feel judged by a number.

When parents are sent the continuum and see where their child has been placed it almost inevitably shapes their perception of their child. They believe the number has something real to say and they forget all the intangible capabilities their child is acquiring. The presence of the numbers reduces debate – parents see them and think they say something real.

It is time to ask ourselves what we want for our children – do we want schools that put all their energies into the micro-management of the production of measurable and uniform outcomes so we can rank and categorise, compare and contrast, group and set the children in our schools or, do we want schools like my friend’s that nurtures questioning, dialogue, respect and responsibility and seeks to fully acknowledge each child’s uniqueness and difference because that is what makes them human? Numbers can’t do that.

Charlie's First Story

Charlie, age 4 years 6 months has dictated his first story. It was the occasion of his ‘Dada’s’ birthday and his Mum asked him if he wanted to make a birthday card. Charlie said, “No, I want to write him a story.” So his Mum collected together card, pens, glitter and pencils and waited for Charlie to begin. This was the result:

Little Red, Gold and Silver and Pink and Green Riding Hood.

By Charlie Lyle-Williams

Little Red, Gold and Silver and Pink and Green Riding Hood went to visit her granny for tea.

Granny was waiting for her granddaughter to arrive.

The wolf was in the wood which was full of trees that were green, yellow and silver.

Suddenly the giant stepped into the wood and he said, “Who dares to steal my tea pot!” He was angry.

“And who has been drawing us?”

Little Red, Gold and Silver and Pink and Green Riding Hood said, “It was somebody I don’t know.” And the giant said the same.

John and Zui were next to the giant. “Hello!” said the giant, “I missed you a long time ago.”

John and Zui said, “We didn’t draw you, it was somebody else we don’t know.”

John and Zui thought about it some more and then John said, “It was the wolf who drew you!”

Rabbit said, “It was the wolf.”

Charlie’s first story portrays an imaginary world peopled with fairy tale characters – an innovative ‘Red Riding Hood’, a wolf and a giant ­who interact with real world characters – his Uncle John and Aunt Zui. Giants exist and are angry, a wolf lurks in a wood that is both real and imaginary – the trees are silver as well as green and yellow (the story was written in Autumn just as the leaves were turning and he did have glitter in his hands at the time). Ordinary things are happening: a child is going to visit her granny for tea; her granny is waiting for her, but there is a wolf and a giant in the wood.  Charlie has a firm grasp of the role of author and reader as he communicates directly with his readers to tell them the giant is angry.

In authoring this story Charlie knows it is a great present for a birthday. He often receives books as presents and he wants his Dada to have such a present. His Mum recounts how proud he was as the present was unwrapped and received with such pleasure. He is delighted to be acknowledged as competent at this thing that is so valued in his family. He wanted to share his accomplishment with me and asked his Mum to phone me so he could tell me all about it as soon as he had finished it. He knew that this was an important ‘first’ for him – his first authored story and he anticipated my positive response and excitement and the delighted reaction he would get from his father when he received his gift.

Charlie has had lots of opportunities to experience the pleasure of books and he knows that stories are authored by people. He has met real-life authors on several occasions. We have told him lots of stories that are made up as well as written down. Since he was two he has frequently been a joint author of stories and it was just a matter of time before he wanted to become a written author, not just an oral collaborator.

By asking his Mum to write down his story he shows he has figured out how to use writing for a particular purpose, it tells us that he knows something of the complexity of writing as a tool of social communication. In doing so he has taken an important step in mastering the complex sign system that is writing. By asking his Mum to write it down he has accomplished authoring in interaction with someone else, and this surely is an important pre-requisite to internalizing the act of writing for himself. He knows that his words can be retrieved later by his father when he explores his birthday gift.

For Charlie his first authored story carries enormous meaning. It is not just a written story, it is a birthday gift for a much loved parent with whom he has shared lots of stories. He also knows that writing can be accompanied by drawings and recognizes the possibilities of drawing for conveying meaning. Charlie’s mark-making in the past has been used to make graphic representation of the meaning he is making from the world (see my blog on Charlie ?) and for Charlie illustration is used to accompany his words, not the other way round as is more common for a child of his age. He uses other tools to enhance meaning; the silver trees in the story have glitter glued to them, his central character has red, gold and other glitter to show her many colours. His Mum reports that after he had created the visual character he began by saying, “Little Red Riding Hood” and she pointed out that she was not just red and Charlie then listed all the colours making this story a co-construction between mother and child. When illustrating the story he first tried to draw a house but he was unhappy with that and his Mum took the opportunity to turn it into a teapot and Charlie then changed the story accordingly and then asked his mum to draw the house. He wanted to draw a rabbit and got as far as the ears but was unhappy with it so she finished it off for him. He is able to create a giant and the figures of Uncle John and Aunty Zui (their gender indicated by the colours pink and blue). Charlie clearly understands the boundaries between written words and drawing and their relationship.

Charlie’s writing has grown out of his experience of stories and story-telling with other people – we have read to him and told him stories and encouraged him to act out stories since he was a baby. As we have immersed him in story he has had experiences that include attending events where real authors have presented their work and signed his copy of their book; he has joined in the acting out of an author’s story on a stage with other children. He has also watched pantomimes of favourite stories like ‘Snow White’ and ‘Robin Hood’ and theatre productions such as “The enormous turnip”. He knows that stories can be read and acted out and he has been given every encouragement to dramatise stories for himself. He role-plays characters from stories everyday.

I now turn to look at the story itself and explore its structure to better understand what Charlie has achieved.

Little red, gold and silver and pink and green riding hood went to visit her granny for tea.

Charlie begins by using a narrative voice to begin the story by introducing the main character or subject of the story. There are clear links to the traditional story of Red Riding Hood but extended as he borrows from the story for his own purposes.

In the next line the setting is established.

The wolf was in the wood which was full of trees that were green, yellow and silver.

This gives the impression of a magical wood which is reinforced through his drawings.  An element of tension is introduced which because of our prior knowledge of the role of the wolf in the Red Riding Hood story suggests a coming crisis.  

Granny was waiting for her granddaughter to arrive.

The receiver of the visitor is introduced through a ‘meanwhile, somewhere else’ device.  The grammatical structure implies the simultaneous nature of the waiting and the implication that someone will know if she doesn’t arrive and alerts us to the possibility of something going wrong.  

Suddenly the giant stepped into the wood and he said, “Who dares to steal my tea pot!” He was angry.

A rift occurs as a new character arrives ‘suddenly’ giving the impression that this was unexpected and possibly threatening.  The possibility is introduced that it is going to be a giant rather than the wolf that prevents the girl from completing her journey to her grandmother’s.

The plot is now advanced through dialogue and at the same time tension is created by the giant’s words ‘who dares?’ This new character is potentially dangerous. Then Charlie as author steps in to stage-manage the story and he tells us, the readers of the story lest we be in any doubt about the giant: “He was angry” leaving us in no doubt about the giant’s emotional state.

This first piece of speech introduces the abstract concepts of stealing and anger and reveals Charlie’s prior knowledge of folk tales where people do bad things to giants (like Jack stealing the giant’s belongings) and conveys the giant’s sense of justified anger in the face of such events.  

“And who has been drawing us?”

An implied ‘and furthermore’ comes with the giant’s second utterance and additional justification for his anger. He demands an answer. This is an interesting turn of events (it is Charlie the author who has drawn the giant) and who is the ‘us’ the giant refer to? It is perhaps the wolf – the other ‘baddie’ in the story?

Red, Gold and Silver and Pink and Green Riding Hood said, “It was somebody I don’t know.” And the giant said the same.

Is our many coloured riding hood trying to protect someone by not saying who has stolen the teapot and drawn him, or is this a genuine ‘don’t know’?

John and Zui were next to the giant. “Hello!” said the giant. “I missed you a long time ago.”

We now meet new characters from Charlie’s real life, his Uncle John and Aunty Zui. Charlie is now mixing fairy tale with actual people in his life, but continues to use typical story language –‘a long time ago’. In line with the trajectory of traditional tales these characters create a sense of expectation that they are there to help the subject of the story achieve her goal and arrive at her grandmother’s house.

John and Zui said, “We didn’t draw you, it was somebody else we don’t know.”

Charlie introduces the device of repetition ‘somebody we don’t know’ and thereby creates an interesting effect characteristic of folk tales and also introduces dialogue as characters speak to each other.

John and Zui thought about it some more and then John said, “It was the wolf who drew you!”

I found myself speculating – is Charlie using John to blame the wolf for the drawing, is this because a wolf is someone who can be blamed because he is not a good character, or does the character ‘John’ genuinely think the wolf did do the drawing? Is Charlie trying to protect himself, he was the one who did the drawing after all?

Rabbit said, “It was the wolf.”

It is interesting that the soft toy that has accompanied Charlie during the day and to bed each night since he was a baby is a rabbit – is it an accident that a rabbit suddenly appears and joins in with the condemnation of the wolf, or has he been a continuous presence in the story as he is in Charlie’s life?

Will the giant be convinced now that it is the wolf that is responsible for making him angry? Is the giant likely to believe John, Zui and the Rabbit because after all a wolf is not to be trusted? Charlie as narrator is not a neutral observer of these events, he is a partisan commentator who makes value judgements about who we should empathise with and who we should condemn.

This is the end of the story and the final resolution ­– whether or not little Red, Gold and Silver and Pink and Green Riding Hood achieves her goal of visiting her grand mother is left to the reader to work out for themselves.

In his first written story Charlie has a clear understanding of audience, purpose and form. He has clearly taken ownership of narrative, he understands narrative structure and is able to tell a story in his own words and people it with characters from his imagination and his life. He has introduced characters, setting, plot and rift. Whether or not the rift was resolved in his own mind we can’t know, perhaps he just ran out of steam, authoring is a demanding business after all!

Teachers faced with implementing the new English National Curriculum in England will notice that I have not made use of the government’s glossary of essential terms to analyse Charlie’s story. When I was at school I failed miserably at the requirement to carry out ‘box analysis’ on pieces of writing that expected me to be able to identify such things as clauses, relative clauses, subordinate clauses, auxiliary verbs, modal verbs, noun phrases, preposition phrases and so on ­ – all terms from the glossary. The whole thing fills me with horror, but I know that at four Charlie already knows how to do all of the things expected by the end of Year 2 when he dictates a story. I do not believe that the structural approach to teaching grammar and grammatical terms required by the new curriculum will not improve the quality of children’s writing. By listing the features of writing a child is meant to achieve teachers will be looking to tick the features off a list to provide evidence that requirements have been met rather than engage with the meaning a child has generated. We need to provide a socio-cultural context in school that enables children to generate meaning through story. Charlie’s engagement in story writing for the first time comes from four years of rich experiences of story, it is not surprising that he wants to appropriate the role of author for himself. As teachers are forced to focus on the features of writing I think children’s natural story-telling capacity may be compromised and will not help them write stories.

Childism: The Little Boy 2

Childism: The Little Boy 2: Today I was reading a wonderful book by Bronwyn Davies, ‘Listening to children’ (2014, Routledge), and this poem from ‘Don’t put Mustard i...