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To want to live and to want to die

“To live” and “to die” are two words of the  natural semantic metalanguage (NSM), which means that they are universal of thoughts in all the languages ​​of the world. Along with “To live” and “to die” there are also two universals words that are “to want” and “don’t want”, which we can then place near the first two primes: “want to live”, “do not want to die” – “do not want to live” “want to die”.

Perhaps it is on these four quadrants that human existence unfolds, or rather the quintessence of medical humanities.

“To want to live”

In the first case, the wish to live “is the blossom of the joy of living, the nature of spring that rises after the dead winter, the project, the light after the tunnel, the creation of the new. It is easy to create new things, when someone is a child, and is amazed at every new discovery. It is more difficult to find this vital force late in the years, when much has been seen, much has been done and the traumas, more or less smaller or larger, have penetrated into our tree bark and inside our brain cortex. Thinking that sometimes it is even harder to find the strength for going on when an illness occurs may be a stereotype: from the patients’ narratives, joy for life, and attachment to everyday life emerged as well as the project phase that it is triggered only if a person is able to find a new lifestyle to live with a disease.  It is like saying that in healthy subjects, perhaps, there is less appreciation of life, and ill people who once have overcome the first mountain due to the disease, begin to feel good again. With a Proust attitude, in pursuing the life gone, many seek out the lost time, that precise one in which everything could be done, the degrees of freedom were many, much more than the current ones, and then are keen to remember. However many patients move on and cope, and learn to enjoy from the little things that happens in their daily life.

There was a girl, Marina, who was ill of a rare form of bone cancer since she was twenty-two years old, who disappeared a few years ago, and who for ten years lived with this disease: she wrote a diary “a black spot in the immense blue of sea “, which I read after her death.

In Marina’s diary, there is no “lost time search” because there is no old age beyond: there is an extraordinary willing of the desire to live at all costs, not a search for oblivion, but a basic wisdom in knowing how to appreciate, for example, a dove that comes without twig at the “window ark” of the room where her hospital bed is,  she wanted to fly to see art exhibitions in all parts of the world, and she knew how  cutting unnecessary affects to sew new healthy bonds and support.

The want to live is also inside the story of a Spanish woman, Pilar, who did not write anything but did much to coexist with a tumor, at first initiated through the discovery of nasal polyps, then cancer invaded the back of the eye bulb and the only thing the doctors could do was, after a standard series of chemio and radiotherapy protocols, “to take the eye off, and a piece of nose was partially rebuilt.” This young woman, Pilar, chose to live anyway, in design and beauty: she is an architect, so she is attracted by her aesthetic natural sentiment. However, after the eye surgery that occurred seven years ago, she decided not to take any further action to put a fake eye on, but she preferred to open a nice bakery in the center of Madrid, but since business was so and so for the crisis, she has begun to draw jewels and sells them on the web. She writes to me that she enrolled in a master on the ancient Mediterranean and wants to take advantage of this second opportunity that life has given her to study the Greek beauty and thought, and feel alive and happy.  She adds, “I’ve never felt the loss of my eye as a loss, for me it was the Door to Life. It is my medal, I feel very proud to be able to show that life deserves to be lived. ”

It is a surprise to me and I believe to many of us too: a trusted faith in the things that happen across the watershed between life and death has given here and continues to give her energy and vitality.

Do not want to die

The second molecule of meaning “don’t want to die” is something more attenuated in its vitality: if in “to want to live” there is in fact “the vital force”, where “vital” also means essential, in the sense that it is the only way for survival, the “do not want to die” involves a denial, a departure – “get away from me this cup”, in this chess game with death, some are saved how and when they want, others live with greater passivity.

In patients’ narratives, we read about how to learn to live day after day in “extreme” conditions, but it is very rarely said “I do not want to die”. The fear of dying is much more explicit, the fear that something “ugly” happens. In the trauma of communicating the diagnosis of serious illness, patients “feel the world falling down,” “feel the ground quacking under their feet,” or say “I am afraid of dying”.  While “to want to live” is dictated by a prospective desire and a survival instinct which rarely is challenged by fear, and the patient I able to overtake it, the “don’t want to die” attitude is related  not only by fear but also by anger, rebellion, a passive subject to something bigger and more powerful. It is a weak cry of strength against an immense power, that one of life or death.

In the Mahabharata, a part of the poem related to the beauty of mankind’s thinking that “removes” the idea of ​​death, erasing this concept, while knowing the inevitability, because so entangled by a vital spirit that puts it into a daily oblivion: if every moment we had the “memento mori”, we would be so paralyzed by failing in our life project. This point is denied by the stories of the patients, but also of the elderly who just because they have the “memento mori”, after a first panic attack, instead struggle, and find their own art form to be vital until the end. Moreover in the Mahabharata, there is a dialogue between the hero, Yudishtira and an ordinary boy on death: the hero is afraid of dying and tells the boy that even gods make sacrifices for not having to die. The boy replies: “… I tell you that death is negligence and ignorance, and that vigilance is immortality. Death is a tiger swirling in the bushes. We have children for death, but death cannot devour who shook his life as dust. Death does not have power over eternity. The wind and life flow from infinity. The moon drinks the breath of life. The sun drinks the moon and infinity drinks the sun. The wise hovers among the worlds. “Hindu philosophy therefore reveals the importance of not overestimating the issue between life and death – the wise man moves through the air among the worlds. Yet something must not be under evaluated: knowledge, understanding, or better awareness. Death is negligence, ignorance, deception, and deathlessness – and therefore far more than one life alone, but immortality is wakefulness, understanding.

When I read between the lines of the narratives of an elderly lady who knows very well that her husband is living the last few months, and still organizes a trip twenty miles from home so that they can spend happy days in a vacation spot, but with the necessary structures nearby, here I feel in front of a wise woman who moves through the air among the worlds.

 

Do not want to live

In the third and fourth quadrants there are the other two possible universal “do not want to live” “want to die”. Here I help myself  with a text published on the “Right to Die” – THE DEATH TREATMENT – When should people be affected by a non-terminal illness?

I make a point: I thought I was a free person, promoting the Article 13 of the Italian Constitution which states”personal freedom is inviolable.” The freedom of choice between extremes of living and dying is sanctioned and accepted by our constitution. I actively participated in campaigns, denouncing in my opinion, the backwardness of the Italian system, the definition of biological will, euthanasia for end-patient patients and the free choice of suicide assisted when the person’s living conditions are so heavy that it is the person’s will to be helped to die. This was for Welby, Eluana Englaro, DJ Fabo and others less well-known that live in conditions that are objectively so desperate in the respect of the desire to die.

“I do not want to -more-live” is the semantic molecule – the third quadrant – on which is based “The death treatment” – the treatment of death in Belgium, which happens regularly at Dr. Distelmans clinic, where he helps to die depressed people. An unknown world to me: I knew the cases of depressed people who suicide because they no longer want to live, but I was not informed of the help given by doctors to realize the unwillingness to live. Wim Distelmans is an oncologist, and knowing the background of these specialists, they often are related to end-of-life care, and concerned with ensuring “sweet death”, euthanasia for patients with very advanced cancers who are no longer curable and who desire not to prolong their life longer.

To this point, everything is part of the normal debate, surely intrigued by moral dilemma, whether to slowly but irreversibly lead to the “eternal sleep” a person in the last days of life – something that happens regularly in many Italian hospitals – or rather to give a much faster death through the use of higher doses of hypnoinductive. In 2017, he provided euthanasia on a younger than 17-year-old boy who was affected by cancer, and, even if this case was very much debated, I think that it may fall into the possible range of interventions of a conscientious oncologist who “overcome the hypocrisy” of the six-month legal age to wait for the elderly, and to act in concordance on the request of the minor.

However, by getting to know who goes to Diestelmans, we discover that not only cancer patients are going, but also patients who have “terrible lives”, so called  depressed patients who go to him to  ask for assisted suicide. The oncologist, who is neither a psychiatrist nor a psychotherapist, after a series of early visits, succeeds in assisting them in the suicide, therefore to bring to true, the “not wanting to live” willingness. This action, not only protected by the Belgian government, in the name of the highest expression of freedom of the person, since this physician has become for the Belgium itself an icon of the utmost expression of freedom.

People who go from Wim Distelmans to ask for death are often “labeled” depressed, but if we read in their writings, they are sick of loneliness, for abandonment by children and partners.

In the narrative of an Italian anesthesiologist who mourns a recently dead patient, what struck me was the network of boundaries on one side (sister, carer), but with huge holes on the other; it comes out the picture of an old lady who had poor relations with her adopted son, who only waited to see her mother “dead” to take the inheritance. A huge loneliness: the abandonment of his son-perhaps the most important link in his life- and the breakdown of the myth of “Aeneas syndrome”. Children no longer bear their parents on their shoulders, and they get ill in both countries, Italy and Belgium, maybe everywhere. The request to stop providing assisted ventilation by Pier Giorgio Welby, patients affected by the moto neuron disease, was not carried by the patient alone, but by his whole family, close and tight, despite all its difficulties.

The article “The Death Treatment” focuses on a patient, glad to ask for being “suicided” by Diestelman. Godelieva, the patient, has been studying since the age of 19, wanting to graduate in history, while her father imposes medicine on her. This seems to be the origin of the trauma, or at least of the whole narrative. A good counselor / psychotherapist or another person would ask, “But do you really want to graduate in history? You’re young, you can do it! Or you can study history on your own! Or you can join a study group! Or is it just an alibi? ”

My feeling, drawn from the article, is that of an”old-fashioned” psychoanalysis, too much yet prone to accuse parents and too few to resolve issues: there is no perfect family and there is no perfect parent. All of us have suffered more or less of being conditioned, even when they told us “do what you want”: we had the unconditional freedom to manage and all its consequences. The analysis is a useful tool if it then leads to action, even tiny, but if it stops in the past, the bottomless pit from which it is difficult to get out, it might become harmful. Godelieva’s life goes on after the suicide of her first husband, her black tunnel of depression, two children who always saw her sad: at a certain time of their life, she lives a second spring with a new partner, but again she is left abandoned. She is now in menopause, she is sad, she says it is only to children, but the children are projected on their careers and their own children. The trauma is deep, it is true, incalculable. As Maggie Smith said in “The Quartet,” a movie on aging “getting old is difficult, very difficult, and not a game for little girls,” with a nostalgic smile and conscious- that smile of the wise man moves through the air between worlds. Returning to Godelieva’s family, I can see the failure of a social system and its relationships of help and the ability to create vitality.

The article also gives another clue: it seems that the suicide explosion in Belgium is due to secularization, that is to the lack of faith in God. Whoever believes in God does not commit suicide. Those who do not believe in God are more committed to suicide. This is the meaning assigned to the Christian religion, a very reductive and, perhaps, offensive dichotomy for secular ethics, which is made up of love, relationships, bounderies, help, support, preciousness for life. The hyper simplification that those who do not believe in a “world beyond” loses the will to try to live here a good live in “this world” is really shocking, and at least to see it written in 2015.

Let’s go back to the oncologist Distelmans who with his LEIF (Life End Information Forum) promotes informative sessions on the right to die with primary school children (age of the listeners, 9 years) with the approval of the Belgian government. We know that children are like sponges: what they hear at that age will mark them for a long time, maybe forever. Going to talk about them of right to death, when they are in the fullness of their bloom, curiosity, vitality, want to play, it seems to me an act of perversion and by the “term” perversion, I suppose an act against nature.

More further: Distelmans brings doctors and students to discover the real pain in the concentration camps of the Jews. He therefore wants to explain to doctors and future researchers the difference of how to die in a “horrible” manner and how to”die gently”: pleonastic to say that the people who complained the most about this gesture were the Jews who claimed that Auschwitz has to be a symbol  for life and not for teaching to kill in whatever way.

Why Dr. Distelmans instead of bringing doctors in concentration camps does not bring patients “alone” – depressed? – to see “beautiful” or “wonderful” things? Sicily or the Caribbean Sea? Or Tuscany in Spring? Provence in June when there is lavender bloom? Or, just Bruges in Belgium, to see homes that are reflected in the channels?

Perhaps, it is Wim Distelmans who is not amused, is not creative enough in choosing their own patients- this is just a little of irony to try to write easier about these themes.

To the children of the Distelmans parents who could certainly wake up before on the loneliness of their loved ones (but is still fashionable this word?) before receiving the letter that “the last will of the parent, that of dying” have been accomplished, the monstrous feeling of guilt remains

In the case of Tom, Godelieva’s son, this is shown in activism against euthanasia with religious associations. And it is a shame that “wanting to live” is cherished as well almost always in religious institutions and not enough in secular associations as a spiritual good.

And this is the third quadrant, “do not want to live”, where despair is so great and life so meaningless that refuses it, you are not in the degree to see it a small shade of green in a black abyss.

To want to die

The fourth quadrant, to wish to die, two atoms of meaning that united together leave a total desperation.  We can partially only admit in the great mythologies of the travels of the Heroes, the Martyrs, the Saints, and those who fight for an ideal for which they believe it can be worthy of life. The Death Epic is glorified in military songs, in Monuments to the Fallen Soldiers, in national hymnes. But the thrust and attitude to “Want to die” is quite different, “I would go in the fire for …” with respect to people Do not Want to Live … “Heroes Are All Young and Beautiful”.

The disturbing position to myself, is the “not wanting to live” as   something that keeps repeating and in our narratives the most profound cause of sorrow is Lady of Solitude, when there is nobody with whom talking about beautiful things and little traumas. That is the big trauma. In this society much more than “liquid”, where “panta rei”, everything flows, everything is distorted, dispersed, vanquished and disappears. Faced with a parallel chart of a doctor who writes about a patient, “she no longer wanted to live but she wanted to continue smoking” one remains ashamed: as if the worst problem for this doctor to settle is the fight against smoking. The despair of the patient is not even taken into account.

 

 

Thanks for this article:

Marina Neri, author of the diary “Un punto nero nell’immenso azzurro del mare“, UR Editore, 2011;

Pilar Lorente for his closeness and affection;

Carol Ann Farkas, who sent me The Death Treatment case, New Yorker, 2015, written by Rachel Aviv;

Participants in the Master in Applied Narrative Medicine, in particular Giorgio Bardellini, Marina Mariani, Maria Stella Aloisi and Ubaldo Sagripanti who commented together on the text;

I would like to thank all the doctors and nurses and other professionals who help patients and their families between these two forces, the impulse to life and the desire for death;

I also thank the patients and their families though some of them are gone, for having shared their experiences with us, hunting away the loneliness.

 

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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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