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Narrative Medicine between the muted desire for wealth and the abuse of the word “normality”

I thought I would do some search on the internet to be aware of what I would be facing and I decided to live in the “normality” and seek solutions in other centres.

I feel normal and able to be independent.

My body and my feelings are normal.

Now I feel normal.

Treatment has revealed very important in keeping the discomfort away and maintaining a normal life.

The disease has almost disappeared now. My body and my feelings are quite normal.

I feel relatively well and lead a normal and peaceful life.

How did you feel being able to tell your story? Normal.

The moment I was told me I had myelofibrosis I felt normal.

I feel almost normal.

I feel normal and able to continue working.

The paediatrician told me that my son was normal.

I expect my daughter to have a normal life like all her other peers.

I imagine a normal future.

The positive aspect is that he is grown, he will never become a giant; but at least he is normal.

Experiences shared by patients and relatives in the narratives in the years 2013 – 2014

Incipit

normal67In his Birth of the Clinic, Foucault provides a critical examination of the hospital environment, or rather of all forms of hospitalization and institutionalization, and analyses the historical moment in which care, at least in France, shifted from hospices managed by religious people ­­— which over the centuries had taken on the main purpose of isolating infected patients — to places of scientific, economic and social, administered by lay people after the French revolution.

On how medicine could and should be “attentive” towards its patients, Foucault writes: “Le lieu de la maladie natural c’est le lieu de la vie: la famille” [The natural place for illness is the natural place of life: the family] taking a stand in favour of home care, and continues “observer le malades, aider la nature sans lui faire violence [observing the ill person, helping nature without exerting violence towards” the patient. The hospital is a place where violence can be perpetrated on the patient in a more or less subtle way. And, indeed it is right at the turn of the eighteenth century that we see the rise of what today is still current dilemma: treating at home, in familiar place, or treating in a hospital or other residential facilities. The French Revolution designated the State as responsible for growing a normal population, with equal rights, duties, and income. Thus in such context, hospital treatment was reserved to the poor, the marginalized, those without family support, whereas, in a functioning society,  everyone else had to be treated at home.

But the underlying paradigm that Foucault emphasizes — and which is launched by the intellectuals of the revolution — is the disappearance of the previous dyad, the split between disease and its opposite term well-being, and the replacement of the concept of well-being with that of normality. As if the Egalité could not move beyond the assumption of normality; the concept of well-being will reappear again only in 1948 with the WHO health declaration, nonetheless the term NORMAL is so rooted into today’s vocabulary that we find it widely embedded in patient records, in medical texts and in the professional language of doctors and health operators. In fact, whenever  the patient is well, he or she is dismissed with a general statement “the patient is normal,” “normally functioning”, “normally tall” and “red blood cells have returned within normal range”.

And this is the greatness of Foucault, who has taken a place in the history of thought on humanization of care, as a keen observer of the medical regard, the medical observation, the detached gaze that allows the clinician to operate its classifications, ever more prolific and fed by continuous research which defines, labels, and discovers new diseases, where the body is a box that contains signs and symptoms of the patients, and is no longer a living organism in its entirety. The unspoken greatness of Foucault is that of having underlined this shift of  this alignment, which  once was much wider and at its maximum power during the period of Humanism, before the period of Enlightenment and Positivism, this carrier that spanned from disease (from Latin male aptus, “poorly adapted”) to well-being, in a natural abode, void from violence and forcing, and away from the loss of identity in an impersonal place, without memory such as a hospital or care hospice institution, especially those for long-term hospitalization such as many of today’s Retirement Residences for Elderly. It is also true that the life span has expanded right in the twentieth century; families have changed-and are continually changing- their characteristics making it historically difficult to transpose here and now the humanistic concept of well-being and healing humanism: the acute illnesses of those times are not the chronic diseases of today.

In itinere

Normality”, as we know it, is a concept that we further meet with the liberal Adam Smith. The patient will undergo a process of industrial production in a factory in health, even away from the potential risks of charlatans of the country, or at least considered these men of science academies, aimed at re-establishing the rule to understand how to transform care from home to hospital, we rely on Adam Smith and his famous example of the pin: ” To take an example, therefore, from a very trifling manufacture; but one in which the division of labour has been very often taken notice of, the trade of the pin-maker; a workman not educated to this business (which the division of labour has rendered a distinct trade),  nor acquainted with the use of the machinery employed in it (to the invention of which the same division of labour has probably given occasion), could scarce, perhaps, with his utmost industry, make one pin in a day, and certainly could not make twenty. But in the way in which this business is now carried on, not only the whole work is a peculiar trade, but it is divided into a number of branches, of which the greater part are likewise peculiar trades. One man draws out the wire, another straights it, a third cuts it, a fourth points it, a fifth grinds it at the top for receiving the head; to make the head requires two or three distinct operations; to put it on, is a peculiar business, to whiten the pins is another; it is even a trade by itself to put them into the paper; and the important business of making a pin is, in this manner, divided into about eighteen distinct operations, which, in some manufactories, are all performed by distinct hands, though in others the same man will sometimes perform two or three of them.  I have seen a small manufactory of this kind where ten men only were employed, and where some of them consequently performed two or three distinct operations. But though they were very poor, and therefore but indifferently accommodated with the necessary machinery, they could, when they exerted themselves, make among them about twelve pounds of pins in a day. There are in a pound upwards of four thousand pins of a middling size. Those ten persons, therefore, could make among them upwards of forty-eight thousand pins in a day. Each person, therefore, making a tenth part of forty-eight thousand pins, might be considered as making four thousand eight hundred pins in a day. But if they had all wrought separately and independently, and without any of them having been educated to this peculiar business, they certainly could not each of them have made twenty, perhaps not one pin in a day; that is, certainly, not the two hundred and fortieth, perhaps not the four thousand eight hundredth part of what they are at present capable of performing, in consequence of a proper division and combination of their different operations”

Foucault writes: “La medecine de la perception individuelle- the subjective- de l’assistence familiale, des soins a domicile, ne peut trouver appui que sur une structure collectivement controlle, et qui recouvre  l’espace social en son entier. [The medicine of individual perception –the subjective- of the family and  home care cannot find other support if not from a collectively controlled facility that cover the social environment in its whole]”.

Here lays the change of the ages, where care shifts from the home to the health factory, where industrial production of health can be managed in a collective manner, entailing –however- the very risk that we are still facing today, that is of the patient becoming the factory-produced pin, standardized, in accordance with Smith’s view.

In short, similarities between the hospital industry and the manufacturing factory, first coloured in France and later in Western countries, by the ideals of Liberté, Equalité, Fraternité, strong words that inspired the revolution: the downside of this is the aspiration towards no excellence, no “well-standing” person, as if aspiring to an even distribution of disease across the entire population. The personalization of care in this context is an unacceptable fantasy.

Hence, generalizations overflows and, inevitably, flattens everything: the language becomes filled with universal quantifiers based on ideological principles: it is curious to observe how both Smith’s liberal approach as the equalitarian one of Enlightenment converge towards the principle of standard, of normality. Indeed, the difference is no longer in the product “health” or “pin”, but rather in the concept of profit: the revolutionary non-profit does not envision anyone becoming wealthy, quite differently from what envisioned by economic liberalism.

Progredit

What is the purpose for this dissertation on normality and well-being? In reading the many stories told by patients who gave witness of their experience and who continue to share their stories with us as they bear the weight of personal conditions of loss of health, or disability, one of the most recurrent terms used to describe the state they perceive when they are feeling somewhat better, or to describe their relationships with family members and loved ones, or the work environment is “normal” or, with a hint of judgment, “adequate“. Only a minority has the courage to write “I feel good, at ease, calm; I’m glad, now it is perfect”; more frequently they manifest enjoyment derived from the experience of writing, and even in conditions in which the disease is under control, they state they feel  normal, that their relationships with family is normal, and that on the workplace is normal.

The etymology of the term normal comes is the Latin norma, which translates as the rule, the law. The Romans called norma the hand square used to measure angles, as well as the tool for farm surveying; it’s noteworthy to recall also how the adjective “right” takes on the meaning of appropriate, as well as walking down the right path, while the left side lead to dispersion.

Sequitur 

The fact that normal has become a shield word is apparent: behind the term normal lays a mixed concept of well-being, discomfort, lack of courage, peacefulness; yet it also can be read according to an anthropological interpretation, perhaps the legacy of revolutionary contagion of the principles of equality: you must statistically fit within the Gaussian wave without flaunting emotions, masked behind social acceptance above all, even more so in places of discomfort, such as hospitals and care institutions.

The spontaneous expression of feelings is very often despised and considered as unpolite in most of the institutional, professionall, academic, working and school environment. Feelings and emotions are difficult ground to be accepted socially, unless they are brought as fiction in cinema. When the disease breaks down the balance between health and illness, emotions do change, and the people experience as first the fear  and pain of losing an healthy part that before was reactive and alive.

And here one of the major scope of narrative medicine, to  provide free expression by which emotions -both joy and sorrow- can be honoured and accepted; and still  so many patients restrict themselves in their writings, reluctungt to tell how they feel, not exploiting fully the potential of narrative. However a part of them have begun loosening up in their writing, both on social media and on paper, even if our contemporary society still has to go a long way to appreciate, accept, and study emotional grammar. Freud wrote in “Civilization and its Discontents”: freedom is not a benefit of culture: it was greater before the advent of culture, and has been restricted by the evolution of civilization. A trend which has continued to be throughout the ages, up to the present time, in which we see a steady contraction of the space of unrestricted drive and of self-expression.

Foucault analyses the clinical movements between the Eighteenth and Nineteenth centuries of the clinic’s old age, the Vielliesse de la clinique, and studied the rebirth of the new clinical science that labels diseases into an ” alphabetical structure”. The medical equation that must be satisfied thus became: just as  language is composed of letters assembled into words that take on a specific meaning and connotation in communication, so the body becomes a collector of letters- those signs and symptoms which we must encode in a grammar in order to understand them. This requires having a place to collect such words — a dictionary— which is represented by the hospital: the only space for the collection of patients, where doctors can learn from books not just made of paper alone, but of flesh as well; in other words, the books represented by the bodies (either living or deceased) of the patients.

And under this undifferentiated reading, from body to body, which does not take into account pathos and psyche, as forcibly driving the physician to classify that what can be seen, the patient will start to restrict any statements of desire, instinct, and putting it in Freud’s terms, will be deprived of his desires, and will say that once he is cured, he will return normal or stabilized, and no longer be the bearer of the anomalies that build the medical grammar, the rationale by which the patient was hospitalized. The person will be a pin within normal range, not a production scrap. Farewell individual perception, subjectivity, and hence diversity. Farewell respect for the individual. Here is the discomfort of civilization for which Freud exposed himself, along with Jung and social mask: in order to be socially accepted one must appear normal.

 Clausa

On the other hand, this meaning of normalcy is soothing, letting us ascribe the word another meaning: everything is fine; as ordinary; within the daily regimen; nature is flowing according to its rulesno extraordinary event scheduled . Narrative medicine that has the potential to serve as a sounding board “of the virtues and disasters of mankind” is likely to flatten out into a mileu of half shades, deprived of its bold hues. This is what occurs as we see reading for example sentences of patients with multiple sclerosis, or lost weight after a gastric bypass, suffering from a malignant disease of the blood, stating: “now my life is normal”. It’s worth mentioning that the use of this term that replaces another  perhaps more ambitious one, which connotes a positive feature, is the daughter of a continuous process of standardization. To report some figures: out of 210 narratives of  patients suffering from a rare disease, the words “normal,” “average” “normality” “adequate” and “appropriate” appear in 66% of the stories collected.

Yesterday, however, we witnessed a story that stood out the Gaussian curve: a young patient cured from Basedow’s disease wrote this testimony: “now my life is perfect”.

 

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Written by

Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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