Archives for category: Illness

It has been many years since I read Jennifer Johnston’s works – The Captains and The Kings and How Many Miles to Babylon? stand out in my mind. A couple of weeks ago I picked up The Christmas Tree (1981), which I had not previously read in a local bookshop.

When choosing a book to read, I realised some time ago that I gravitate towards titles where I hope to find myself within the text. This really struck me while reading The Christmas Tree – the central character Constance frequently reminded me of me.

A slight read in terms of length (183 pages), the book unfolds as Constance’s narrative, where she shares both her feelings about dying from leukaemia and her recent and long past memories. Constance is not old – her baby is nine months – but she has decided to face death without embarking on what she sees as futile treatment. This choice – a freedom of sorts – is resolute and critical, although Constance also realises how insignificant this personal sense of control ultimately is in the face of imminent death.

‘If only it were possible to choose your time to die, I thought, this would be a good moment. A time to be born and a time to die. Only you hadn’t the right to choose. All the other choices that you had fought to be allowed to make, were all irrelevant in the end. Someone else made this choice.’

Constance realises that this will be her last Christmas, and the book opens with a memory from her childhood.

‘It was always a great day when the Christmas tree was brought into the house.’

Constance’s sister Bibi hovers throughout, desperately hoping that she will change her mind and agree to a hospital admission. Bibi refuses to acknowledge the fact that Constance is dying. The sisters love each other, as siblings do even when there is little else to connect them.

Constance: ‘We have a lot of genes and some memories in common. That’s all.’

Constance left Ireland, for London, many years earlier, only now returning to Dublin to die. Bibi remained in Ireland, looking after their parents, particularly the protracted care of the slowly dying mother. Constance disagreed with Bibi’s desperate need to keep their mother alive at all costs, which undoubtedly contributed to her own decision to avoid such a fate.

‘I saw an old woman who should have been dead being kept alive and tormented by the whole process just to make you and all the doctors and nurses feel good.’

Constance also muses on ‘the road not taken’, particularly her decision many years earlier not to marry Bill, a local boy and now her GP, and friend, in her dying days.

‘Suppose I had married Bill and we had gone to Connemara and had six children, would we have been better people? Happier? Would I have comprehended more in that isolation than I succeeded in doing in the isolation I created for myself?  Would I have been able to write, in those circumstances, the books that I wanted so much to write? Damn fool questions with no answers.’

Constance is resigned to the process of dying, and what it necessarily, or so she believes, entails. She remembers the pains of labour – just months earlier – and how it had a pattern, a rhythm.

‘It didn’t frighten me, even when the pauses became inadequate for me to collect my equilibrium.’

But now is different.

‘I am frightened now. There is no rhythm now. I get no warning. It is like being eaten by some animal that tears at me until its hunger is temporarily satisfied and then it sleeps uneasily until the hunger starts again.’

‘I smell of death these days… It creeps out through my pores again and clings to my clothes contaminating anything I touch. It depresses me almost more than the pain.’

The ending is predictable, but not tragic. In fact, there is something hopeful and redemptive as Constance’s baby daughter appears and reminds us that our lives and stories can continue without our physical presence. We are all of us born into the middle of someone else’s story. These narrative threads, like silver linings, extend without us, and beyond.


The first instalment of Jenny Diski’s reflections on her recent cancer diagnosis has appeared in The London Review of Books (

It is essential reading.

I have always loved Diski’s writing (Skating to Antartica particularly). I read the current article – ‘A Diagnosis’ – with sadness, but also with joy. It is vitally Diski – funny, brave and real – and I am grateful that when faced with the challenge of dealing with her recent cancer diagnosis, she decided to share her experience.

She asks the question:

‘A fucking cancer diary? Another fucking cancer diary… Can there possibly be anything new to add?’

Yes. Diaries afford the possibility of witnessing the experiences of others, and although experiences may overlap and share some similarities, each individual one is unique and invaluable as a direct result of its very subjectivity. Thus, each personal experience is by definition original and irreproducible. The value of reporting such experiences is that, although we cannot truly share them, as invited readers we can listen, witness and hopefully affirm the living of another. Michael Palin speaks of diaries as the antidote of hindsight. Which they are, and as the nearest expression we can get to the possibility of understanding what it might be to exist in someone else’s shoes, they can be the most invaluable and authentic of literary forms.

Especially from Jenny Diski’s pen.

‘The future flashed before my eyes in all its pre-ordained banality. Embarrassment, at first, to the exclusion of all other feelings. But embarrassment curled at the edges with a weariness, the sort that comes over you when you are set on a track by something outside your control, and which, although it is not your experience, is so known in all its cultural forms that you could unscrew the cap of the pen in your hand and jot down in the notebook on your lap every single thing that will happen and everything that will be felt for the foreseeable future.’

The ‘Onc Doc’ slipped in at the outset that the goal was ‘to treat, not to cure’. It is salutary to consider both what is often said and what is mostly unspoken during this most critical of person-to-person interactions. Raymond Carver’s poem on the same topic of cancer diagnosis comes to mind:

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…

… and he said something else
I didn’t catch and not knowing what else to do
and not  wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back 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 have even thanked him habit being so strong


Diski also reflects on the doctor/patient relationship:

‘It’s quite hard to rapidly absorb the notion that someone forecasting your fairly imminent death might not be your enemy.’

‘Sullen rudeness is a possible option handed to us cancerees.’

She considers the language used. When given a prognosis of ‘two-to-three-years’, what is actually being said? Is ‘Onc Doc’ favouring 2, or 3, with the extra year tagged on as a hopeful gesture? What does this timeframe meaningfully equate to in terms of how we normally live our lives:

‘Will the battery on the TV remote run out first?’

Suddenly thrown into another sphere, that of the ‘Cancer World’, Diski contemplates the role she may now be forced to play:

‘I am and have always been embarrassed by all social rituals that require me to participate in a predetermined script’.

‘Now I was faced with the prospect of a rather lengthy (in one view) public/private performance by which to be excruciated.’

She rejects metaphors of attack, and refuses to personify the cancer cells in her body:

‘Under no circumstances is anyone to say that I lost a battle with cancer. Or that I bore it bravely. I am not fighting, losing, winning or bearing.’

In the face of her diagnosis and all its inherent challenges, Diski answers her own question ‘why another cancer diary’. She is a writer. It is what she does.

‘So I’ve got cancer. I’m writing.’




I love Sebastian Barry’s writing. His prose is so lyrical and poetic, you do not want to miss a single word. Having enjoyed The Secret Scripture and On Canaan’s Side, I very much looked forward to his new novel, The Temporary Gentleman. I read it in less than 24 hours and was not disappointed.

In many ways, it reminded me of John Williams Stoner as it also tells the life story – a tragic life story – of one man and his family. It differs in many ways also, not least because The Temporary Gentleman is narrated in the first person of the main character, Jack.

We follow Jack’s story as he begins, in his 50s or so, the retrospective diary of his life. It is a sad and mostly regretful life, not least because alcohol dominated throughout. It is this that I want to focus on here, how Barry depicts the tragic effects of alcoholism. The Irish and alcohol are intimately and historically interconnected, but Barry does not default to stereotyping. The tone throughout is empathic rather than judgemental, as the situation in which Jack and his wife Mai inescapably find themselves unfolds:

‘It was as if the bricks and mortar of the house itself were saturated in alcohol.’

‘To remember drunkenness is so difficult because it is really a form of human absence, a maelstrom that blanks out the landscape.’

Behind the alcohol is the story of a couple who have lost each other, and who fleetingly regain something in the shared camaraderie of drinking. But as drink follows drink, the inebriated state again turns them into enemies:

‘But the savagery, the gear of savagery. The subtle metallic click of the machinery, when the rack is brought to the starting point, and the ropes are tied to the body.’

‘The terrifying eloquence of the barely articulate drinker. Insults, that might have done as well in the form of a knife, fashioned into a great bludgeon, for fear it would not strike home…

…Turning ourselves night after night into monsters, the creations of some failed Frankenstein…

..Nothing left at the centre but the cinder of what had been, splinters of the lost panel depicting out setting forth nearly thirty years before, in heroic guise, on this darkening journey.’

‘In the morning — nothing ever mentioned.’

The darkness is infinite and the black hole in which Jack and Mai find themselves is bottomless. But there is redemption here, of sorts. And love. The Temporary Gentleman is perhaps not an uplifting read, but a necessary one.




The Spanish-Argentinian writer’s most recent novel has three narrators, 10 year old Lito, his mother Elena and his father Mario. Mario is dying, and the three contemporaneous voices tell the story of this experience from their own personal perspectives, the stories sometimes running in parallel, sometimes tangential. This is a wonderful book, which somehow manages to capture in just 160 or so pages the individuality and the heterogeneity of our approaches to life, heightened here in the face of dying and death.

We are first introduced to Lito as he embarks on a road trip with his dad. Mario wanted to do this trip with his son, at least once, just like his own father had once done with him. Mario is clearly already very ill, and just about manages to complete the journey. There are no deep and meaningful father-son chats during the trip. The opposite in fact, as Mario has deliberately chosen not to tell Lito that he is dying, or even that he is seriously ill. Later, when Mario has been admitted to hospital for the last time, Lito is sent to his grandparents. From here, Mario, at this point very near death, questions whether keeping his son in the dark has been the right thing to do:

‘you’re at your grandparents’ and you don’t know why, we’ve sent you there until the end of the holidays, I’m meant to be travelling, we talk every day, I try to sound cheerful, am I deceiving you, son?, yes, I’m deceiving you, am I doing the right thing?, I’ve no idea, so let’s assume I am, I prefer you not to see me like this…’

Instinctively, one feels that the lies were a mistake, but it perhaps easy for someone outside the tragedy within which the family find themselves to make a cold-blooded judgement call. Lies beget more lies, which become increasingly complex and entangled the longer they are allowed to continue. After his father’s death, which Lito has been told was the result of a road traffic accident, Elena reports:

‘He asks me how such a big truck could get crushed. I tell him sometimes big things break more. He asks me why Pedro [his father’s truck] looks the same as before, if he had such a big accident. I tell him his uncle did a really good job fixing him up in the workshop.’

Mostly, Lito’s voice is simply that of a 10 year old child, caught in the reality of his own day to day life, which is, at least until the moment of his father’s death, uncomplicated by anxieties for the future, and still in possession of a naivety that allows life to continue unquestioned despite the fact that the worlds of those around him are collapsing.

In Mario’s chapters, he speaks directly to his son, as if writing letters to be read posthumously. Yet, despite this direct address, Mario already seems detached, not quite present. Perhaps the lack of punctuation in his chapters contribute to this, with the text flowing as a stream of consciousness away from him, as his strength and life progressively ebb from reach. Much of what he touches on seems too painful to stay with. Speaking of the lie that hangs around the story he and Elena have concocted for Lito about his illness:

‘…I’d give anything to know what’s going to happen to this lie, what you’ll think of me when you discover it, you’ll have a few photos of me…but I have no way of seeing you, I mean will you be a nice guy or a rogue…’

Reflections on suffering and the aftermath of being given his prognosis are particularly moving:

‘…the worst of it is that I’ve learnt nothing from all of this, what I feel is bitterness, before…I though suffering was of some use…a bit of suffering in exchange for a conclusion…crap, it’s all crap…’

‘…from the moment they diagnose you, the world immediately splits in two, the camp of the living and the camp of those who are soon going to die, everyone starts treating you like you’re no longer a member of their club, you belong to the other club now, as soon as I realized this I didn’t want to say anything to anyone, I didn’t want pity…’

‘…I don’t want to touch anything that’s part of my body, everything in my body is my enemy now, this is what it is to be dead.’

For me, the most captivating voice was that of Elena. She raises many issues around the witnessing of dying, and the complexity of emotions, which can be contradictory and inconsistent, that can accompany this experience. Elena’s chapters are a rich source of references to authors who has written around the subject, as she questions what is happening to Mario and to all their lives in the face of his dying.

Quoting John Banville, Elena speaks of the effect of Mario’s diagnosis:

“It was as if a secret had been imparted to us dirty, so nasty, that we could hardly bear to remain in another’s company yet were unable to break free”

“From that day forward all would be dissembling. There would be no other way to live with death”

Elena also speaks of the divisiveness of serious illness, how it has distanced herself from Mario, at times even alienating each from the other:

‘It drives me crazy when Mario assumes that controlling attitude of his. As though illness depended on our level of composure. Mario is brave, his brothers keep repeated like parrots. If he were as brave as all that, he would weep with me each time we speak.’

‘When I go into the room, dressed in clothes he likes, my hair styled for him, I can sense resentment in his eyes. As though my liveliness offended him.’

So much of the loss around death and dying can happen before physical death itself:

‘By avoiding the subject of his death, Mario delegates it to me, he kills me a little.’

‘By caring for our sick person, we are protecting their present. A present in the name of the past. What am I protecting of myself? This is where the future comes in…For Mario it is inconceivable. He can’t even speculate about it. The future: not its prediction but the simple possibility of it. In other words, its true liberty. That is what the illness kills off before killing off the sick.’

‘For us carers, the future widens like an all-engulfing crater. In the centre is already someone missing. Illness as a meteorite.’

Inevitably, the aftermath rests with Elena:

‘If death interrupts all dialogues, it is only natural to write posthumous letters. Letters to the one who isn’t there. Because he isn’t. So that he is. Maybe that is what all writing is.’

As Elena looks at photos of Mario when he was well, she questions the truth of what we remember:

‘Looking at you again when you were beautiful, I wonder whether I am celebrating or denying you. Whether I am recalling you as you actually were or forgetting you when you were sick. Reflecting about it today…the biggest injustice about your illness was the feeling that this man was no longer you, that you were gone. But you weren’t: he, this, was my man. Your worn-out body. The last of you.’

A gem of a book, which haunts and lingers…





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 []. 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.




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

It is even more wondrous.

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

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

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

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

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

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

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

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

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

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

And he nearly bested them too.”

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

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

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

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

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

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



‘A true tale of love, death and DNA’


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 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.




I love The Shed, a temporary (or at least that is what I assume…) theatre on the Southbank, which successfully manages to combine impressive creativity with the intimacy of a small(er) venue.

nut, by debbie tucker green (lower case deliberate), which currently plays at The Shed, exemplifies this achievement. Relatively short at just 75 minutes, nut is a moving, unsettling, and thought-provoking poetic piece. Twenty-four hours after I saw it, I am still considering what it was that I experienced last night.

On one level, the play might be read as a relatively straight-forward narrative, but then, it isn’t. The central character is Elayne, who we are introduced to at the outset as she plans her funeral. We gather that Elayne is on medication, and we presume that this is for a ‘mental illness’ as self-harm is revealed.

Elaine is never alone on stage. This is a polyphonic piece, and throughout the play we are introduced to 6 other voices and characters, all of whom are integral to Elayne’s life. What is less clear, is whether these others are external or internal to Elayne’s world and psyche. Whichever, it matters little as we watch a fragment of Elayne’s life (and suffering) unfold before us.

I loved how the dialogue overlapped, creating a seamlessness between all the characters. Elayne’s world, with all its ‘players’, felt tangibly real, and authentic. The acting was hugely and uniformly impressive throughout.

In Scene One, Elayne considers what might be said at her funeral:

‘It would start with something bout how I am…

…Not no shit about how people think I am but

how I (am) how I really / am.’

‘They’d know cos I’d tellem. What bits I did

and what bits I didn’t. I’d leave a taste, leave

an odour somethin that’ll linger longer than

the service – an emotional stain -‘

Amidst the pathos there is also much humour, and we laugh, when invited to do so.

nuts is a mysterious piece, mysterious in the sense that it is obtuse and delivers no easy answers. That is also its strength, as it thus reflects the lived complexity of life, which is never straightforward.

‘…If there ent no bell. People get confused.

It’s confusing…

No bell is like no interest. Not interested.

Don’t care – don’t wanna / know.’

‘If you had an outward view, a curiosity, a

natural curiosity like normal people – …

…by havin no bell that works – and it’s not

bullshit – is confusing. Says something

about you – …

…says confusion, says you don’t give a shit…’



…which is a quote from Anna Quindlen, the Pulitzer Prize winning journalist, novelist and essayist.

But her question does not in any way relate to her hugely impressive CV and achievements. Rather, it stems from her encounters with healthcare professionals, which has prompted her reflections on the extent to which she was seen as an individual in that context, as a person rather than as ‘just another patient’.

The writer was recently invited to deliver the Humanism in Medicine lecture at the Association of American Medical Colleges (AAMC) annual meeting (

Quindlen’s question – “Do you know who I am?” – arose from her experience of two separate medical encounters, both involving anaesthesiologists. The first was patronising (my judgement call), and left her doubtful as to whether he knew anything about her or about her previous history.

The second encounter was a positive one:

“Only a short interchange, yet in some fashion she knew who I was.”

Quindlen continues:

“And I assume she was at least as busy as her male colleagues.”

But gender distinctions are not the point. Instead, what Quindlen wants to get across is that she felt ‘seen’ by one professional, and not by the other.

“She was professional, and she was kind. Oh, what a combination that is in what often seems like a cold and inhuman world.”

Quindlen sees the problems in health care – patients feeling ignored, isolated, patronised – as part of a larger societal problem. Power relationships wherever they occur, and which too often underlie the doctor-patient encounter, ‘foment fear and mistrust and alienation’. She speaks of the ‘MDeity’, doctors as little gods, and is surprised how pervasive this remains, despite huge technological and other advances.

Quindlen’s conclusion is that in the end, the person – the patient, the sufferer – seeks and needs ‘the human touch’, to be seen as an individual, and to be considered as such.

She ends with advice for the doctors she addresses:

  • Try to be present in the moment
  • Acknowledge uncertainty
  • Practice empathy
  • Try to be kind