Imagine I didn't care.

I didn't endure your shouting. I didn't let you tower over me. I didn't find excuses for your aggression; I didn't see the shadows of demons from your previous illness.

I hadn't done everything in my power to realise your dreams. I hadn't stolen from others to give to you. I hadn't bothered to call your family. I hadn't given you the time I didn't have. I hadn't fulfilled your ultimate wish.

You didn't give me a box of chocolates, tied with a blue ribbon and laced with tyranny and confusion. I didn't proudly take pralines home. I didn't admire a gift-tagged box on my shelf. I didn't savour sweet treats one at a time.

You didn't proceed to wrench chocolate from my aching viscera.

I didn't receive a second-hand message that my "so-called help" was no longer welcome; that you never wanted to see me again. You didn't tarnish my reputation. I didn't lose sleep.

I wasn't left with the after taste of bitter cocoa.

Imagine I didn't care.


Biography
Dr Clare Bostock is a Consultant Geriatrician. She is passionate about caring for older people living with frailty. Her work areas include acute hospital care, hospital at home, and rehabilitation. She has a special interest in falls, appropriate prescribing, and quality improvement.

Clare started creative writing as a way to relax. She enjoys writing to educate others about important and diverse topics from ageism to work-life balance.
 
This poem is intended to leave much unsaid. What did you imagine and infer?

The first day we were received at the Teaching Unit of the Hospital Zonal de Bariloche, province of Rionegro, in Argentine Patagonia, the secretary told us a phrase that marked the rest of my rotation.. “One can train to be a doctor for one’s country or work to be a doctor for the world”.
 
Laura, my third-year Family and Community Medicine residency fellow, and I had put our best clothes on for the presentation at the hospital. We were at the beginning of our one-month elective internship at a health centre in Bariloche, and with a mixture of anguish and fear, we were separated into two different clinics. The secretary must have realised this, since he assured us that on the first day we would be taken there by car by the directors of each clinic. “You are going to see the other Bariloche”, he said, smiling.
 
Bariloche is a town in Patagonia, located on the shores of Lake Nahuel Huapi and close to the Andes Mountains, bordering Chile. In fact, its name derives from ‘vuriloche’, a Mapuche word meaning ‘people behind the mountain’. Known as a ski resort, as well as an end-of-the-year trip destination for upper-class students, Bariloche hid another reality closer to the mountains that we soon discovered.
 
Both the clinic to which Laura was sent, 34 Hectáreas, and mine, called Arrayanes, were located in the ‘upper part’ of Bariloche, providing medical and community care to specially vulnerable populations. In each clinic, in addition to the usual structure of doctors, nurses and administrative staff (similar to our own), there were also other healthcare professionals who were part of the team, such as dentists, nutritionists, psychologists, and health visitors.  Each clinic had its own organisation, so in ours, ‘the demands’ (i.e., patients who came without an appointment) were attended to first thing in the morning and from half past nine in the morning the ‘shifts’ (or appointments) began, which lasted about twenty minutes each. It should be noted that the doctors at my clinic were in charge of the periodic check-ups of both healthy children and pregnant woman, addressing not only physical problems but also social illnesses such as bullying or gender violence. So, they asked every woman and child that came in after the routine exam: “And you, how are you?”, “Do you fight a lot with your partner?” , “Do you have friends?”.
 
My tutor at the clinic encouraged me to go out with the health visitors to walk around the neighbourhood, an activity that I really wanted to do in Madrid but never had time due to the time constraints of our endless agendas and lack of interest by the politicians in the ‘Community’ care of our specialty.
 
With the health visitors I toured both Arrayanes, our neighbourhood, and ‘las tomas’, a region even closer to the mountains which consisted of occupied land by homeless people.  We carried out vaccination campaigns for children, we went to schools to schedule talks on toothbrushing, we went to homes to deliver medication to the most vulnerable patients, and a long etcetera of ‘boot and gown’ medicine.
 
The contrast between the shantytowns, where our work was being carried out, Bariloche that was only about a forty-minute walk was a shocking architectural and socio-economic. Bariloche was a place where many German exiles took refuge after World War II, and the names of streets and hills, such as Cerro or Cerro Otto, have Germanic origins given by the inhabitants.
 
Adjacent to this Bariloche, famous for skiing and chocolate, were the houses we visited, some of them without electricity and running water. We explored the river that passed by and carried chlorine tablets in our backpacks to hand out to whoever needed them. Medication and vaccines were in our pockets along with seeds that we handed out for people to plant in the land.
 
“It’s easy to make book medicine” said one of the doctors during a break “to apply medicine to to life is the real challenge”. In this way, she simplified the complexity of the clinical cases we were dealing with, such as a diabetic insulin-dependent patient who did not have the money to buy food. In such a case, how was the insulin adjusted? This and many other cases, in which complex illnesses were mixed with difficult social situations was part of the daily routine of my tutor and the rest of the team.
 
At my tutor’s office, I saw many of the women with whom the social worker had her ‘Flower Group’, in which several women met to make soap, sew dolls and try to heal the deepest wounds. I took a special liking to this group, and I also appreciated the fact that they let me be part of it. They discussed and entrusted their life experiences, many of them traumatic, with me. Their life problems were often expressed as bodily discomfort, so the communication between my tutor and the social worker was essential to be able to address the cases in the most appropriate way possible.
 
Laura, from 34, had a similar and completely different experience, as I believe is part of the magic of these internships.  While I was on the local radio talking about the differences in health care between Spain and Argentina, Laura was vaccinating dogs, which were a big public health problem, as they were loose in the streets.
 
And why title this piece “memoirs of a Kodak”? Because a picture is worth a thousand words, or so they say, and before I left, I was given a disposable camera, with the mission to take a picture every day I spent in Argentina. Of course, we took pictures of impressive places, such as Cerro Catedral, the Seven Lakes Route, the Alerces Waterfall or Cerro Campanario. But I also had the opportunity to discover the entrails of what is not told, to walk daily through those neighbourhoods in which all the guidebooks recommend not to go into and to greet their inhabitants in a friendly manner, who for a limited time in space became my patients. The daily photos show the dusty and unpaved streets, the slope leading up to the house, the lakes, the meals we had at the office when we finished our work, the office, the neighbourhood.
 
Arrayanes, by the way, is the name of a tree.

As a medical student, I frequently found myself learning how I should talk, which technical/medical vocabulary I should use and how that vocabulary made us better doctors. Long lectures about the meaning of certain words, their use and way to employ them and many hours of discussion between doctors where this vocabulary was used almost like poetry. But with time and an open mind to work and share ideas with people outside the health care system, I realised that this vocabulary didn’t make me better, but instead it isolated me.

Now, I will not debate the actual importance of technical/medical vocabulary and its use in hospital wards, clinics and between doctors across the globe which has proved itself useful daily. What I want to discuss is the value of this vocabulary outside health workers niche, especially how younger doctors use this vocabulary in their interactions with patients and relatives. The excessive use of technical vocabulary is believed to specify the actual status of a patient but, often, this causes the opposite: confusion, disbelief and surely distress are the only thing our words brings to those in need. As if, the use of this specific vocabulary made our decision more real, or at least, less wrong. Putting our patient in a position where the lack of understanding (therefore a lack of communication between both parts) makes us feel safer with our diagnosis and treatment, fuelling the ideology: less questions means more consults which means more efficient medic. 

But this is not the only field we fall short with our words; in the economical, logistical and political fields, our better to be vocabulary keeps us apart from key conversations and decision-making teams that may need the perspective of a medic to ensure their decisions benefit the many in terms of public health. The lack of active communication between health care providers and government is visible all across the world, with both parties reluctant in sharing ideas and empathizing with the needs, work, and vocabulary expression of the other.

Health care providers are in a similar situation with the general population, people who not only mistrust us, but also avoid interact with us as much as they can. I may recon, that this conception loses its value once the patient bonds with the therapeutical and personal opinions of a medic. But as the COVID-19 pandemic showed us, the popular opinion is than you can’t trust a medic.

We, as a community, are responsible for sharing key information, and we may not even have the tools to share that same information thanks to an internalized way of communication. So in order to restore the trust in medics and health care services, improve everyone’s health with impactful decisions, we need to deconstruct our vocabulary and find the balance between what we want to express and which words we use to do that. We need to considerate how our technical vocabulary makes our practice more efficient, but on the other hand builds barriers with the society we serve and keeps us apart from the decisions that, ironically, affect the health of the many. We, as a community, need to start building bridges of communication with the people we can help, the people than can help us and the people we care and love.

The field of medical humanities is a wonderful way for physicians to understand the inner world of patients through reading illness narratives. The physician can vicariously experience the fear of new symptoms, the loss of autonomy of becoming a patient in the health care system, the grief over persistent pain, loss of functioning, and loss of identity as a person becomes a “patient.”

There are also many amazing illness narratives by physicians and health care workers about their own experience of pain, uncertainty, fear, and sometimes a sense of triumph or sometimes ending in death―as it does, sooner or later, for all of us. 

Another way for a physician to take advantage of this tremendous learning opportunity is to have the human, all too human, experience of illness first hand. 

On August 1, 2022 I was diagnosed with a nevoid melanoma on my right upper arm. After subsequent wide excisional surgery and sentinel lymph node excision, I was staged at IIIa for microscopic metastases to two lymph nodes in my left axilla. The wound healed well, but I suffered a side effect of lymphatic cording running down my left arm that caused aching and cramping and for which I have been getting physical therapy. I currently have NED (No Evident Disease). My oncologist recommended immunotherapy, Nivolumab, as adjuvant therapy to prevent recurrence. Roughly, my five-year survival rate is 80% without treatment, 90% with treatment. 

Numbers―we translate the human experience into numbers―they mean everything and nothing. We strive to practice “evidence-based medicine” by translating human experience into numbers. In my work as a psychiatrist in the primary care setting working with veterans, I translate human suffering into the GAD-7, PHQ-9, and PCL-5: code names for anxiety, depression, and posttraumatic stress. With “my” numbers, I strove to understand and integrate them, and yet how does one understand a one-in-five or one-in-ten chance of mortality within five years? Eventually, I decided the numbers mean everything and nothing. While they are statistical truths, I, myself, only have one life and my life or death will not be a percentage, but an absolute certainty. I started to think of the wave function in quantum physics, the uncertainty principle, and Schrödinger’s cat―this cancer will either kill me or it won’t. Is there a sense that we can influence the collapse of the wave function in which Schrödinger’s cat lives? 

A serious illness makes everyone a philosopher of sorts―and perhaps an amateur quantum physicist as well. The question is what kind of philosopher does one wish to be? To some extent this is a choice, but to some extent I find that the preconditions of my existence, my childhood experiences and personality, many things I thought I left behind―such as a certain melancholy and feeling of alienation―can bubble up into the mélange of melanoma and melancholy.  

Illness can humanize one, but it can also dehumanize. I suppose this gets to what it means to be fully human. To suffer, to feel pain, to have emotions like fear, to face uncertainty while drawing on whatever life philosophy one has been able to create in one’s earlier life―this puts one in touch with the common lot of humanity. His Holiness, the 14th Dalai Lama has said that “It is our suffering that is the most basic element that we share with others,  the factor that unites us with all living creatures.”[1]

However, illness, itself, can be a dehumanizing process. One becomes other than what one was and wasn’t one already being fully human? For me, I didn’t feel sick (although recovering from surgery entailed pain and rehabilitation) until I started immunotherapy. Now I feel like I’m continually about to come down with the flu―I am fatigued, clumsy, a bit spacey, my muscles feel heavy, I have general aches, and sometimes I get headaches that will persist for a few days. On a good day I feel 80% of “myself” and on bad days I feel more like 60% “myself.” I will joke with my good friend, Jonathan McFarland about how many KU (Kopacz Units) I am at on a given day and I will ask him how many MU (McFarland Units) he is at. These numbers creep back in and mess with my identity and sense of self. When I was having a down swing of a couple weeks, I texted Jonathan that I felt like I was becoming an “un-person.” Isn’t that the logical conclusion? If I am 100% myself when I am well, doing all my well-being tricks I have been trained to do so that I can be a productive work unit, then when I am at 80% KU or 60% KU, am I not becoming less of a person? There is a certain logic there, however from another perspective we could say that I was 100% a well-being, healthy person and now I am 100% a person going through a journey of illness. It is incontrovertible, a truth, that I am less able to be who I was cognitively, physically, and morally (in the sense of morale)―and yet I am still 100% human, just a different kind of human and one which I am not used to being. 

Are we more ourselves when we are at optimal, flourishing, well-being and health? There is a bias in society and culture, as well as within health care culture that we should always be striving to achieve this level of well-being. Well, sometimes this is just a pain in the ass. Even without the excuse of illness, sometimes it just gets tedious to try to get one’s body to jump through a bunch of well-being hoops. 

It is intellectually interesting to put on a hospital gown (more about this in a minute), to have needles and tubes inserted, fluids drained and fluids infused, and then to be wheeled around to different departments where they inject radioactive tracers or encourage one to be still and patient while bombarded with radiation or magnetic fields so that one can be abstracted into a digital image and manipulated, if necessary. 

The hospital gown―is there a reason these are designed so that it is almost impossible to tie and secure this oneself? Try doing it with a  couple of 7 cm incisions and sclerotic lymphatic vessels in one arm. The gown is a recurrent reminder that one is disabled and dependent, that one’s body is not one’s own, but rather an object that requires easy access, and that one’s modesty is irrelevant compared to the ease of functioning of the institution. 

Nietzsche often wrote in aphorisms. Maybe I will be that kind of philosopher of illness and health. There is less need to go back and edit and work on transitions between thoughts and ideas. My mind works this way now, anyway. Just be glad I’m at 80% today instead of 60%. At 80% KU I can develop aphoristic thought, at 60% it gets a little more stream of consciousness and more influenced by labile moods. I could try working on this essay more, craft it into a well-conceived and logically structured academic product. But I don’t really feel like it. I got up at 04:30 AM and couldn’t go back to sleep and thought I might feel better if I wrote for a while. Perhaps I have written myself back to human or perhaps in writing about my feelings of loss of self I have become less human. 

The title of one of Nietzsche’s books, Human, All Too Human, came to mind when I started writing this. I have interrupted the writing periodically to look through The Portable Nietzsche and A Nietzsche Reader off my shelf. I searched the internet and Amazon to find a good copy to replace the one I had at university and let go of somewhere along the way, probably in a paroxysmal fit of well-being or maybe when we moved to New Zealand. I bought a copy on Amazon that would arrive in three days. Then I cancelled the order because I’m writing now, not in three days, and I don’t need another book on the shelf. Then I found this quote in an article by Peter R. Sedgwick, that I printed out and will likely read when I have enough KUs. 

“Sickness is not for Nietzsche an exceptional state, but rather the normal and essential condition in virtue of which human life is lived and its possibilities of sense sought. As will become clear, the desire for meaning is itself, for Nietzsche, something which springs from our relation to sickness.”[2]
​
I promise I will do more work on this essay and try to tie together the concepts, build out the humanizing and dehumanizing effects of health and illness, further critique the oppressive culture of well-being, vent a bit, and I will add too many quotes and citations so that they take up at least a page of text―I will do all that when I am feeling more human…or perhaps I am already there…human, all too human to be a good academic…

References
[1] The 14th Dalai Lama [Tenzin Gyatso], in Cynda Hylton Rushton, Moral Resilience: Transforming Moral Suffering in Healthcare (New York: Oxford Press, 2018), 3.
[2] Sedgwick, P. R. (2013). Nietzsche, Illness and the Body’s Quest for Narrative. Health Care Analysis, 21(4), 306–322. https://doi.org/10.1007/s10728-013-0264-1.

Everyone who has studied medicine or any of the areas of health sciences has experienced a part of reality that is extremely complex, has experienced pain and suffering, has been part of moments of joy and moments of great sadness; he or she has had to live a lot in a relatively short time. We, the health professionals, have been rewarded with the possibility of accompanying the human being in moments of vulnerability, we have been allowed to know the person through the tragedy of disease. The honor and responsibility that this implies is undeniable; however, little is said about the training process and what the exposure to the healthcare system does to the soul and heart of those of us who have decided to dedicate our lives to accompanying our patients.
 
Many times, if not the majority, it is the same system that ends up dehumanizing what, in the voice of Edmund Pellegrino, should be the most humane of sciences and the most scientific of the humanities.That is why The Doctor as a Humanist had such a high impact, not only on my professional life, but above all on the personal side, rekindling and igniting in me a deep inspiration and aspiration to bring back the heart and soul to Medicine. The Doctor as a Humanist opened up endless possibilities, where through international collaboration I have been able to strengthen ties of friendship, teamwork, and research with the common goal of positively transforming the reality we live in. At DASH we know very clear that our objective is to put the human being at the center of all professional action. Envisioning the doctor and the patient as persons is the first step in moving from technique-focused medicine to truly humane medicine.
 
I invite everyone who feels this concern and who wants to participate with us in this mission to change the world of medicine to come closer, we are always with open arms since in DASH all ideas, no matter how crazy they may seem, have a place, because it is only through these efforts that we can truly live up to our aspiration. I wholeheartedly appreciate the opportunity to be part of this great team.
 
Let's bring heart and soul back to medicine!

Cómo es que The Doctor as a Humanist cambió mi vida?
 
Todo aquel que ha estudiado medicina o alguna de las áreas de las ciencias de la salud ha experimentado una parte de la realidad que es sumamente compleja, ha experimentado el dolor y el sufrimiento, ha sido parte de momentos de alegría y momentos de mucha tristeza, ha tenido que vivir mucho en relativamente poco tiempo. Nosotros, los profesionales de la salud, hemos sido premiados con la posibilidad de acompañar al ser humano en los momentos de vulnerabilidad, se nos ha permitido conocer a la persona a través de la tragedia de la enfermedad. Es innegable el honor y la responsabilidad que esto implica; sin embargo, poco se habla del proceso de formación y lo que la exposición al sistema sanitario hace en el alma y en el corazón de aquellos que hemos decidido dedicar nuestra vida al acompañamiento de nuestros pacientes. 
 
Muchas veces, si no es que la mayoría, es el mismo sistema el que termina por deshumanizar a la que, en voz de Edmund Pellegrino, debería ser la más humana de las ciencias y la más científica de las humanidades. Es por eso mismo que The Doctor as a Humanist tuvo tan alto impacto, no solo en mi vida profesional, sino sobre todo en la parte personal, reavivando y encendiendo en mí una profunda inspiración y aspiración por traer de vuelta el alma y el corazón a la medicina. The Doctor as a Humanist abrió un sinfín de posibilidades, en donde a través de la colaboración internacional he podido estrechar lazos de amistad, de trabajo en equipo, de investigación con la meta en común de transformar positivamente la realidad que vivimos. En DASH tenemos muy claro que nuestro objetivo es poner al ser humano al centro de todo actuar profesional. Vislumbrar al médico y al paciente como personas es el primer paso para avanzar de la medicina centrada en la técnica a una medicina verdaderamente humana. 
 
Invito a que todo aquel que sienta esta inquietud y que quiera participar con nosotros en esta misión por cambiar el mundo de la medicina se acerque, estamos siempre con los brazos abiertos ya que en DASH todas las ideas, por más locas que parezcan, tienen cabida ya que solo a través de estos esfuerzos es que verdaderamente podremos vivir a la altura de nuestra aspiración. Agradezco de todo corazón la oportunidad de poder ser parte de este gran equipo. 

Traigamos el corazón y el alma de vuelta a la medicina! 

​By Prof. Jonathan McFarland
Associate Professor, UAM
Senior Lecturer, Sechenov

​Like all interesting ideas there is quite often a long period of germination; things don't happen overnight. And this is the same with The Doctor as a Humanist. At the beginning of the 2000s I began working in hospitals in Majorca, not as a health professional because I'm not medically trained but as a medical English coach and trainer. It was during the first years of the new millennium thought that I began to become interested in the connexion between my studies in the humanities and health and medicine, whose vein runs through my family like blood runs through a human being. I believed that there must be a way to unite these two supposedly distinct areas, and I was not wrong since I soon discovered that it was a growing and thriving field.
 
So, in 2008 I formed the Medical Humanities of Mallorca Association (MHMA), which, like the Quarrymen to The Beatles, was the precursor to the Doctor as a Humanist. We held one meeting in the Natural Sciences Museum in the town of Sóller in the Tramontana mountains of Mallorca, and two years later, in response to the devastating earthquake in Haiti we organised a classical concert to raise money to help.

First Meeting in 2008 in the Natural Sciences Museum in Sóller, Mallorca 

Then, there was a long hiatus, for numerous reasons, but in 2017 under the guidance and support of Professor Irina Markovina, I organised a series of lectures devoted to medical humanities at the University of Sechenov, the alma mater of one of the greatest Doctor-writers in history, Anton Chekhov. It was a success, the students were very enthusiastic, and this led us to organise the first symposium in Mallorca in 2017. By sheer determination and youthful enthusiasm, we managed to put together a very successful symposium with experts from around the world. In my final speech, ending the one and-a half-day symposium the words bringing back the heart and soul to medicine came to me spontaneously, which is now The Doctor as a Humanist’s motto. 

The final day of the first The Doctor as a Humanist Symposium – 14th October 2017

It has been a short but very exciting journey to date, with two presential symposiums, one at Sechenov University in 2019, and the other this year in Oporto, at the i3S Research Institute dedicated to Humanism in Surgery, which we believe was the first of its kind. Unfortunately, in 2020 we had planned a fascinating symposium which was to be held in the University of Anahuac in Mexico City, however the escalation of COVID-19 pandemic meant that it had to be postponed. Nevertheless, we did not stop, and we went online and in 2020 we organised two symposiums: the second New Realities in Times of COVID-19 with the support of McGraw Hill Education. In these two symposiums we were able to get important speakers such as Dr Alfredo Quiñones, Sue Stuart Smith, Professor Trevor Gibbs, and Doctor Julio Frenk to name a few. 
 
In 2021 we continued with one of themes from 2020; the connexion between ecology, the environment and health, and worked together with Ars Medica and Dr David Kopacz along with the support of the Fundación Universidad Autónoma de Madrid we organised an online conference - Nature and Medicine: Restoring the Balance between Earth and Health, which was followed up this year by a webinar by Dr Jonathan Coope entitled Toward an Ecologically Dimensioned Medical Humanities. 
 
The Doctor as a Humanist is not only, however, about symposiums since we have had four online courses, which have included students, doctors, nurses, researchers from as many as 22 countries. Indeed, in December 2022 we will be organising our fifth online course, and we are now planning what will be our seventh symposium. Medicine, Art in Barcelona, on 13th to 15th of October 2023, as a joint venture between the University Pompeu Fabra, Hospital del Mar and The Doctor as a Humanist. 
 
We aim to be as international, interdisciplinary, and intergenerational as possible; for us the key to our success since 2017, and indeed the key to our future success must rest with the students, whose ideas, enthusiasm, and creativity is at the centre of our NPO (Non-Profit Organisation). 
 
With this new blog we hope that all who are interested in the connexion between health and humanities, from whatever stance, whatever belief, and whatever country, will add their ideas to our thriving community with a small post dedicated to what they believe is important in the ever-important field of medical/health humanities. So, please put pen to paper or open your laptop and help us restore the ‘heart and soul to medicine’.