My daughter is 17 and currently meandering around Europe, enjoying a new found sense of freedom and of adventure. Her excitement as she increasingly appreciates life’s possibilities is almost palpable.

And who knows what these possibilities will materialise as…

I came across this poem in a recent issue of The New Yorker. I love its ambiguity and its realism, although I never felt that my daughter was ‘mine’, or that I held any ownership over her.

 

Fourteen

Marie Howe

 

She is still mine–for another year or so–

but she’s already looking past me

through the funeral-home door

to where the boys have gathered in their dark suits.

This is an edited version of a talk I gave to medical students yesterday at Bristol University.

 

Churchill once said ‘The farther backward you can look, the farther forward you can see”.

The opportunity to talk here has been welcome on so many different levels. It has totally encouraged me to indulge in a very nostalgic meandering through my life, a reflective wondering on how and why I have ended where I am, and specifically here today, talking about it all. I have been considering that 16-year old girl as she left school so many years ago, and headed towards her university life in medicine, and have been wondering what she would make of me, and of my life now.

And so this talk is really a hugely narcissistic self-indulgent exercise in me looking at me…

My decision to do medicine was no accident. The youngest of five, I came from a very medical family. I was thought to be clever, top grades, though equally drawn to English and languages as to the sciences. I wanted to be a concert pianist, but I wasn’t good enough. I wanted to be a poet, but no one encouraged me. I tried to persuade my parents to allow me to do journalism. At 16, and a relatively timid convent girl, I lost that battle. And so my life in medicine commenced.

It didn’t suit me from the outset. The training was narrow, limited, and largely shallow. One of my piano teachers remarked that he had known many medical students who were great musicians, but most of them had quit music by the end of their training. That resonated with me. Of course that was decades ago, and training has changed so much over that time, hugely and hopefully in a way that fosters creativity and being true to self. I do so believe that such an approach nurtures people who are doctors because they are themselves.

I got through medical school, without any accolades, pretty much scraping through. I was uninspired by all of my undergraduate medical life. But I had no other (perceived) skills, and so continued on the medical trajectory. I chose internal medicine as my field. I did various medical jobs, attained the MRCP in the UK, and ended up working in the The Royal Marsden Hospital, London. An insanely busy job, it was here that I came across Palliative Medicine. Then very much in its infancy – initially called Terminal Care – I was immediately drawn to the specialty. Having seen many patients go through endless rounds of chemotherapy, even those who appeared to be imminently dying, Palliative Care seemed to connect with patients as individuals in a way that I had not really seen up to then. This realisation – that Palliative Care could uniquely address individual needs, something that medicine in general had hitherto not succeeded in doing –  reminded me of one of my first clinical encounters some years previously, during my house jobs in Ireland. My very first house job, in Chest Medicine.

A German man, in his early fifties, on holidays with his wife, and with a known diagnosis of lung cancer (although given the ‘all clear’ just before going on holiday), presented with a history of increasing shortness of breath. Widespread disease was soon confirmed. The man was dying, away from his native country, and he did not speak English. A number of issues struck me from this tragic scenario, but perhaps most memorably his silence. As I daily checked his blood gases (a futilely invasive procedure in this context), I was profoundly struck by my impotence, my absolute inability to ‘hear’ and to bear witness to his suffering. The silence seemed beyond my inability to speak German, and he to speak English, but rather the silence ‘spoke’, even screamed, of the ineffability of his experience of suffering.

In many ways it was no surprise that I ended up in Palliative Medicine, for me the most creative and individual of clinical medical specialties. It was then in its infancy – I was fortunate enough to work with Dame Cicely Saunders at St Christopher’s Hospice. But while the Hospice movement took off at speed, introducing the concepts of Palliative Care to other doctors was challenging. My training years were mostly spent in teaching hospitals, where acceptance of death and dying was an anathema to the very essence of doctoring. Thankfully, this ethos has changed and continues to change.

Another obstacle at the time was the lack of an evidence base for the medical aspects – symptom control – of Palliative Care. This tapped into my scientific brain. And so I embarked on a mission to forge a medical credibility for what we were doing within Palliative Care. I was one of the first trainees to do an MD – 3 years of research into the clinical pharmacology of opioids. I left Palliative Care to do this, moving sideways into Oncology. A useful and humbling step, as it afforded me an insight into how other specialties viewed Palliative Care.

From then on, pain management became my primary research focus. At this point I was a Consultant and Senior Lecturer in Palliative Medicine, working within a multidisciplinary team in a large teaching hospital as well as having sessions in a nearby hospice. I also became deputy editor of the Cochrane Pain, Palliative and Supportive Care Group, where we organized systematic reviews of the evidence (or not) underpinning what was happening clinically. I was passionate about evidence based care. As such, I spearheaded the medicalization of Palliative Care, seeing it as a necessary step towards establishing a credibility for the specialty. I believed that Palliative Care could only succeed if we managed to convince our non specialty colleagues of its value. I also believed that by achieving this we would eventually do ourselves within Palliative Care out of a job. Naïve opinions on both counts.

And so it continued for a few years.

Until a few things happened. A change in my personal life encouraged me to rethink my life as a whole. I started an MA in Creative Writing at Sussex University, and thus began writing poetry again. This unlocked something within me and I started to see the world differently. Some of the poetry evolved from my own experience as a patient. When pregnant with my daughter I had a vascular episode, which mostly resolved apart from hearing loss. I began to try and make sense of that experience through poetry. Various doctors at the time spoke of how ‘I’ had lost my hearing, as if I had been somehow culpable, or careless. Current language of illness often appears to place the victim in a position of blame – ‘she lost her battle with cancer’ –  as if fault lies with the sufferer, who perhaps did not even try hard enough to ‘fight’ the illness. You notice language acutely when you are on the other side. Susan Sontag’s words came to mind during my own experience: Sontag described the world as sharply divided into two kingdoms, that of the sick and of the well. I had been catapulted into the other kingdom. It was a distressing place to be, and this was not solely because of the condition itself.

At the same time, and interconnected for sure, I started to see Palliative Care specifically, and clinical medicine in general, in a different light. And it bothered me. I became acutely aware of the gap between the patient and the doctor, a gap heightened by language, where one story, the medical one, trumped all others and silenced voices that it failed – or did not try – to understand.

I had many epiphanies which led to my leaving clinical medicine. As the hospital palliative care team we had been seeing a man with pancreatic cancer for pain control. Despite trials of various opioid and non opioid analgesics, his pain continued. I suggested that we as a team were missing something here. This was a middle aged man, recently diagnosed with advanced and incurable cancer, who had a prognosis of less than 3 months. Can the experience of pain be a truly uni-dimensional one in such circumstances? Can analgesics alone alleviate physical pain in the context of dying? One of the junior doctors at the time was angry with me for not appearing to believe the patient’s reports of persistent and unremitting pain. I absolutely believed him. But psychological pain, for want of a better term, is to me as valid and real and authentic as so-called physical pain. This clinical encounter made me wonder where Palliative Care as a specialty was heading, largely spearheaded by people such as myself who were instrumental in its medicalization in the name of credibility.

A further clinical encounter: a woman with advanced cancer, who I was seeing daily, saw me approach the ward one morning. She immediately started to scream ‘save me from the black hole’. Distraught and terrified by a nightmare she had had, I did not know how to respond to this story, this living nightmare that she continued to experience in her waking hours. Yes I listened, but in my medical model, her words were outside and beyond anything I could, or perhaps even wanted to engage fully with. Susan Sontag’s words and kingdoms come to mind again. At times, particularly in serious illness, the gap between the kingdom of the sick and the kingdom of the well can seem vast (even though in reality the dividing line is very thin) and now as I think of it, an awareness of this must surely have heightened her distress, as I stood impotent and silent on the other side.

My leaving clinical medicine was the result of these stories, and many others, both at the bedside and beyond. I left to search for another language, a non-medical one that might have the potential to embrace and express the experience of illness, and of suffering.

And to some extent I found it, though the search continues, within my other passions, literature and the arts.

As is my nature, there were no half measures when I decided to leave clinical medicine. It was all or nothing. I never considered working part time. By then, I have been working full time for 20 years, apart from four months’ maternity leave. Colleagues were both shocked and baffled by my decision. My family – a predominantly medical one – found the decision unsettling, disquieting and difficult to understand, particularly my brother, a Professor of Medicine and a medical workaholic, who believes that medicine is not a job, but a vocation. My views on this would necessitate another platform, and another time.

And so I started my exploration of the language of illness. I wanted, and needed, to better understand what the experience of illness, of suffering, of dying really was, without the metaphorical white coat.

I went to Kings College London to do a fulltime MA in Literature and Medicine. I can honestly say that this was the best year. Ever. To be so totally immersed in a world of literature, reading, discussing, arguing, and writing was a joy. The literature was explored in the light, and darkness, of the world of medicine. We were a relatively small group, mostly comprising English graduates and doctors. Somehow, this masters magically brought both my passions – medicine and literature – together in a way I had never before experienced. It was a blissful year of self-indulgence.

All at a cost, at least financially. To fund myself, I sold my flat, downsizing, and lived relatively meagerly for a year. Which was a valuable and humbling experience. One that I am so glad to have had. I did some freelance medical and scientific editing, which was very time consuming and did not pay a lot. But it helped.

Following my stint as a mature student, I needed, and wanted a job. I also knew that I did not want to go back to clinical medicine. I felt that the time away had benefitted me. I felt different. I lived differently. I was back playing the piano, had taken up the cello. I was writing my own blogs. Yoga became an integral part of my life. I had space to reconnect with my self, the one that I seemed to have left behind during medical school.

I saw a job advertised in the BMJ – medical writer at Medikidz, a company that creates comic books for children on health and illness. I am still there today, more than four years later, now as Managing Editor.

In some ways, this job is not that far removed from my experience working in clinical medicine:

Firstly, it taps into my involvement with evidence based care. Accurate medical information is critical to our ethos and credibility.

Secondly, it may just be me, but I think that doctors almost universally operate from a strong ethical stance. In the clinical arena, this puts the patient first. Within Medikidz, for me, this puts children first. Which can be a challenge. Sometimes people forget that we are creating content, not for parents, HCPs, clients, but explicitly for children. So every word, every image must be meaningful for them. The rest is noise. This is a battle that I fight every day, and one that I do not always win in a highly competitive business world. I am actually rubbish at business, but perhaps this is a perverse advantage in my current working world. My moral high tone may annoy some, but it also reassures most that someone is constantly checking that what we done allies with our mission statement, which has children, not adults, at its core.

Thirdly, working at Medikidz has re-ignited my love of medicine. I have to be up to speed with the latest guidelines on so many conditions that I have learnt so much medicine over the past years. And medicine is endlessly fascinating. It would be hard to find a richer subject that is constantly evolving, challenging and surprising.

A couple of years ago the BMJ Doc2Doc blog invited me to contribute a post. Re-reading it over the weekend, I am a little embarrassed to admit that I called the piece ‘From Dr to Ms’… In it I speak about my ‘walking away from medicine’, a phrase used by others not by me, very much concluding that I had no regrets about leaving. That still holds true. A year ago, I briefly toyed with the idea of returning to clinical medicine, but decided against it. I think I would be a better doctor now, but this is not a hypothesis that I am going to test.  I worked clinically for over 20 years. It was enough, and I am very glad that I had that time, but also glad that I did walk away from the metaphorical bedside to explore other aspects of medicine, and of me.

And I continue to explore. Not only at Medikidz, but also within the Medical Humanities. I am an editor at the BMJ journal Medical Humanities, where I commission book reviews, and curate the blog, which hosts an eclectic mix of posts, focusing on the arts and how it might, or might not, interact with medicine and the experience of illness.  I guess to some extent through this work, I see my role within the humanities as bringing the bedside to the humanities, something that I want to do for all those patients whose lives I have touched on. I carry their stories with me and I hope that I can do something to facilitate the hearing of their voices and others. This past weekend I attended a Pain Conference in London, a truly multidisciplinary event. I chaired a session that included talks by a poet and a playwright alongside an academic reporting on non verbal communication of pain in those with dementia. Such events fill me with hope.

The Pulitzer Prize winning writer Anna Quindlen addressed the American Academy of Family Physicians, urging them to them to make a connection with patients as people, as individuals. ‘Do you know who I am?’ she herself had asked during an unfortunate consultation, meaning not Anna Quindlen the writer, or the condition, but Anna Quindlen the individual.

This is a very important message that I hope all doctors heed. Too often people are seen as their condition, but there has been a chapter before and there will be another chapter after the clinical consultation in the life of each and every patient. Lives that we as doctors too infrequently wonder and enquire about.

But I would like to throw something else out there – something for you all to think about as you embark on your exciting medical lives ahead. Make time to stop and consider a different but inextricably connected question – Do you know who you are?

Thinking back to my 16-year old self as she headed to medical school, to my 21-year old self as she started her house jobs and encountered that dying German man so early on in her medical career, I am grateful to her for making the choices that followed, and for refusing both to drift and to settle.

I am also grateful to medicine for facilitating my journey with her, and for helping me to get from there to here.

Always a controversial and problematic discussion, the much debated association between mental illness and creativity continues to engage and to elude definitive conclusions.

I am one of those sceptical of a necessary link between creative genius and mental illness. But am open to being challenged on this.

Check out this video from Aeon that proposes the potential of art as a better tool that science for understanding mental illness. The art in question focuses on the work of Edvard Munch, who I have spoken about here in previous posts.

 

CQ

 

My daughter, now 17, had her last school day on Friday.

A moment, for both of us, in very different ways.

As a mother, I have mostly delineated my life in accordance with her timelines, her growing upness and its attendant and essential growing awayness. Now, I wonder about her life ahead, about the separate worlds we increasingly inhabit, and I work on allowing the distance between us to flourish.

I like this poem by Natalie Shapero, which wonderfully encapsulates the essence of poetry – the saying of so much with so few words.

Survive Me

It wasn’t for love of having

 

children that I had a child.

Rather, I simply didn’t know how a person

 

could cross, fully shoeless, a bed of coals

and not burn, and I needed

 

someone to pass this to.

I needed my obtuseness to survive me.

 

But I never accounted for our thwarting era.

Every day, the paper

 

runs a remembrance

of a child, the notice struggling to sing the few

 

years lived: He never sketched the Earth without

its hatch of latitudes. She did

 

not like to try new foods.

 

–Natalie Shapero

image1

I saw this gem at the Camden People’s Theatre last night. Solo performed by Luca Rutherford, it focuses on ‘trying to figure out mortality and accepting our finiteness’. A tall order for 60 minutes, but the performance delivers many riches, particularly in how it challenges us to consider how we might enhance – or even re-define – what we call ‘living’, by changing our perspective on death.

I am instinctively drawn to any forum within the arts where death, and dying, is openly discussed. Having worked clinically within the field of dying, and now living outside it, it amazes me how separate those worlds are. Increasingly, and to be applauded, the arts are addressing this most taboo of subjects.

Thematically drawing on personal experiences of loss and impending loss, Rutherford delivers her thoughts on our finiteness in a uniquely engaging way. She is ‘us’, and thus relatable. We recognise our own thoughts in her outspoken ones. There is little new in the content in that we all know and (theoretically) accept our mortality, but Rutherford manages to give the truisms a fresh resonance. I left challenging my own perspectives on life, death, and the stuff of living, and filled with an optimism that I can do it ‘better’.

We are all dying, but mostly we don’t think in those terms unless death is imminent. At the performance we were all handed a label with a hypothetical number for our remaining alive days. Mine was 111. The challenge was to consider what we might do/change, knowing this fact. It is a intriguing exercise. I am not sure that I personally would change much, apart from supporting my daughter through the process of considering/accepting life without me.

But aside from being told that one’s death is imminent, the fact of our death remains this largely ignored and unacknowledged truism. Rutherford suggests that dying is about more than sadness. I agree. What if we changed our perspective completely, and lived a dying life, one that embraces death, imminent or otherwise? Such a living, defined by an acceptance of death, affords the enhanced ability to appreciate the joys of being alive, right now, this minute, and every minute thereafter.

It is such a curious paradox. We all know that we will die, but the thought is so unbearable for most that we choose to ignore it and to instead live a life that aspires to immortality. And yet, an acknowledgement of our finiteness may actually enrich our living…

Learning How To Die is not a depressing or downbeat show. It is at times poignant and sad, but also funny and uplifting, reassuring and hopeful. Like life itself.

It left me with much to consider.

Go see if you can.

 

CQ

I saw – experienced – Cleansed this week at The National Theatre. For a long time I have wanted to see Kane’s work performed. Yet, having read about audience responses to the current production – walk outs and faintings – I was apprehensive. It was difficult to approach the play objectively; every review that I have seen emphasises both audience reaction to the performance and Kane’s suicide at the age of 28, usually in the first paragraph (as of course have I).

I am glad that I experienced Cleansed. The relentless simulated violence did result in my shutting my eyes on occasion. I find physical violence, here as torture and rape, impossible to willingly witness. I imagine/speculate that Kane used violence metaphorically to reflect extreme psychological suffering, a means of externalising and communicating depths of internal distress that would otherwise remain unseen and unshareable. I can understand this approach, but I still find the use of violence to provoke a reaction problematic. Violence distresses me on a purely visceral level, and I also resent being emotionally manipulated by extreme provocation into ‘feeling’.

In terms of thematic content, I suspect that there are many possible interpretations. For me, Cleansed is about love, loss, and grief – in essence the suffering of humanness – and the impossibility of sharing emotions that threaten to destroy the sufferer. It seems to also question what in our lives, and emotions, is real or imagined, and whether this distinction even matters.

Cleansed was mesmerising and captivating for its entire 100 minutes. I was struck by the beauty of the choreography, which was enhanced by a perfectly chosen soundtrack.

It was a haunting performance, one that it will linger.

 

 

CQ

The Irish poet Brendan Kennelly was born on April 17, 1936. Some of his poems remain in my top 100 favourites, including for example Poem from a Three Year Old, which I have often read to my daughter.

Poem from a Three Year Old

And will the flowers die?

And will the people die?

And every day do you grow old, do I

grow old, no I’m not old, do

flowers grow old?

 

Old things – do you throw them out?

 

Do you throw old people out?

 

And how do you know a flower that’s old?

 

The petals fall, the petals fall from flowers,

and do the petals fall from people too,

every day more petals fall until the

floor where I would like to play I

want to play is covered with old

flowers and people all the same

together lying there with petals fallen

on the dirty floor I want to play

the floor you come and sweep

with the big broom.

 

The dirt you sweep, what happens that,

what happens all the dirt you sweep

from flowers and people, what

happens all the dirt? Is all the

dirt what’s left of the flowers and

people, all the dirt there in a

heap under the huge broom that

sweeps everything away?

 

Why you work so hard, why brush

and sweep to make a heap of dirt?

And who will bring new flowers?

And who will bring new people? Who will

bring new flowers to put in water

where no petals fall on to the

floor, where I would like to

play? Who will bring new flowers

that will not hang their heads

like tired old people wanting sleep?

Who will bring new flowers that

do not split and shrivel every

day? And if we have new flowers,

will we have new people too to

keep the flowers alive and give

them water?

 

And will the new young flowers die?

 

And will the new young people die?

 

And why?

 

This poem is so nostalgic of my mothering. My daughter asked similar yet different questions, but more than the questions themselves I remember the earnestness of the young questioner, and her then desperate need for answers to the mostly unanswerable.

Tonight at dinner, our conversation reflected that of two adults at different ends of the spectrum of lived experiences. Now 17, she still questions the ‘why’ – as do I – but she has become more accepting of the unknowable.

Kennelly believed that ‘Poetry can come from anywhere – unlike the novel, unlike drama, which require perhaps human experience; poetry has in it a kind of child wonder.’

I would like to believe that my grown up daughter continues to carry that child wonder within, that her ‘whys’ of life will continue to be asked, and that her questions will not be beholden to answers.

Happy birthday, Brendan Kennelly.

 

CQ

 

 

 

 

 

One of my heroes, the director Patricio Guzman was in London this week for the screening of his latest film The Pearl Button. It has been four years since his harrowing masterpiece Nostalgia for the Light (reviewed here). During that time he has been exploring the Patagonia hinterland of his native Chile.

The Pearl Button bears many of the hallmarks of Guzman’s earlier works. It is extraordinarily – and eerily – beautiful. Sublime feels appropriate. The landscape of Patagonia – the coastline, the ocean itself, the mountains, the lakes – is breathtaking, and the cinematography does it poetic justice and more. Guzman creates a world, interweaving narrative and images, where the history of the indigenous people of Patagonia, and their tragic fate at the hands of invaders and settlers at the beginning of the 20th century, is slowly revealed. Rich in metaphor – water, sky, planets, infinity – The Pearl Button is a story of loss, not only of the Patagonian people and their culture, but more recently – 1970s and 1980s – of those thousands who died during the Pinochet regime, and whose bodies were dumped anonymously forever in the ocean. It is almost impossible to comprehend the cruelty of not only killing loved ones, but to compound the grief of those left behind by deliberately denying them the possibility of burying their dead.

Guzman confers an animate and almost spiritual significance to water. It contains secrets, and ‘colluded’ with the atrocities that Pinochet sought to keep hidden. The exiled Guzman continues his work in The Pearl Button of revealing these secrets, and of exposing the horror of the dictator’s regime.

During the Q&A after the screening, Guzman confirmed that a further film will complete the trilogy, this time about the Andes and its people.

Good news, indeed.

 

CQ

Following on from my most recent post, this review – ‘Elegy of an unfulfilled life‘ – of the current production of Chekhov’s play at the Almeida in this week’s The Lancet seems particularly apposite…

 

CQ

I went to an interesting event called ‘5×15’ this week. It was my first experience of this regular happening, which consists of five 15 minute talks by well known/prominent-for-diverse-reasons people.

This week’s featured Roz Savage (who holds world records for ocean rowing and is an active environmental campaigner), Gavin Francis (a GP and writer; his most recent book is Adventures in Being Human, a landscape of the human body), Raj Kohli (the highest ranking Sikh officer in the Metropolitan Police), Isy Suttie (comedian, writer, songwriter and actress), and Andrew Solomon (writer and lecturer, and author of The Noonday Demon, amongst other books).

Both the speakers and the content were wide-ranging, diverse and entertaining. The 15 minute time limit is a good tactic – just long enough to build on a single idea or theme, without overburdening the listener with too much detail. There was much of value, and many points raised have lingered. Much to consider and to reflect on.

One thought has particularly stayed with me. The first speaker, Roz Savage, worked for 11 years as a management consultant, which she hated but struggled to find a way out of. She delved into self-help books looking for a solution, one of which recommended the task of writing your own obituary; two in fact: one that reflects the life you will probably lead if you stay in the same predictable trajectory, and another that reveals the life you could lead if you chose a path that feels more meaningful and rewarding, albeit one that may require much courage and determination, and an openness to failure. It did not happen overnight, but Roz slowly and steadily revised her trajectory, choosing the second path, making the necessary changes that could and would allow her to lead a more meaningful, purposeful, and rewarding life.

I am now distracted by this obituary idea. It feels important to resolve. Do I truly believe that I am right now living the most present, meaningful and authentic life that I possibly could?

Or not…

 

CQ

 

Follow

Get every new post delivered to your Inbox.

Join 252 other followers