Art therapy, White Number volunteer, Narrative Medicine and more. Why did you want to delve into Narrative Medicine?The ISTUD master’s program was one of the harbingers of total closure during the Covid-19 pandemic. I am always looking for existential nourishment, but I would have to specify how I came to know about it. I thank my curiosity and the algorithms. I discovered that there is a space to give voice to an expressive part in the narrative of suffering and illness, all-encompassing a variety of artistic media. I met very interesting authors. I have met professionals who intend to give reflexive voice to the caring relationship, even as a refuge from a saturation of the everyday that overwhelms and disrupts the deontological bearing. I have exchanged experiences and projects with workers who neither accommodate, nor resign themselves, in the obligation to mediocrity. By my therapeutic art training I work with images created, rather than enjoyed, but it is always beautiful and useful to turn emotions into images, images into words, words into ritual. Through Narrative Medicine I have also benefited from a nurturing group that values individual inclinations and experiences, regardless of tools. I also appreciated the ability to support, then be able to propose, collaborations from one’s own perspective. For this, too, I give thanks for the opportunity of the current interview, which led me to new ideas. Last but not least, the balance between qualitative collection and quantitative evaluation is definitely forward-looking. It has also opened up for me to participate in a monthly international group (Eunames) where experiences of Narrative Medicine are exchanged with enthusiasm and curiosity. NB: What it is.
How do you apply it in your daily work? The expressive dimension, by supposed psychic economy, is often relegated to a merely decorative function. I apply Narrative Medicine when conditions allow, as well as psychodynamic Art Therapy and/or to Philosophical Community Practice. One has to find or create an open system i.e., a willingness to activate resources, initially especially mental resources.
Do you think the end-of-life theme has already benefited from this new and revolutionary medical approach? All issues, primarily ethical and existential ones, can benefit from a relational approach aimed at listening and expressing one’s inner world. Vexata quaestio: are we in the healthcare field? I really like the courage in defining ourselves as “medicine”: it is and we need to cross prejudices, rediscover ancient and visionary tools, without fear of pigeonholing creativity, but recognizing its transformative reach, even at the institutional level. We are beyond healing. We are in healing and wellness.
Let’s pick up on your being a volunteer at White Number: tell us what happens, and what narratives do you listen to? By synchronicity, I manage to become a White Number volunteer in the year my mother passes away. After a few months of duty shifts, I contact another activist, a board member of the association, Luca Coscioni, an actress and filmmaker. I tell her about my fantasy: to create a play about the voice of the callers. She asks me, direct and simple, “What do you want to emerge?” I want the narratives of callers to emerge. People in pain, desperate, lonely, afraid, wanting information to protect themselves or simply in need of venting. Often dismayed at having to face the thought of end of life for the first time. Also often struggling with exhausting bureaucratic fetters or poor care situations. When talking about their own end of life, some use poetic, clear, evocative metaphors. Sibilla Barbieri was also accompanied in November to Switzerland by her own son, Vittorio Parpaglioni, who then self-disclosed. I also write in memory and out of respect for this choice, which was laborious, but public and fruitful. Sibilla’s body depended on life-support treatments. This requirement was not recognized for her to be eligible for medically assisted suicide. I add new narratives? first, when I spoke with Sibilla Barbieri, who was accompanied by her son to Switzerland in November.
When we talk about end of life, between the lines, the word death emerges. Do you think the current legislation in Italy is adequate with respect to voluntary end-of-life decisions? What more could be desired? Are there other countries as possible references? There is debate in the literature about the two terms. It seems to me that “end of life” reflects the complexity of the dying process and perhaps, even, scares less than the mere word “death.” Unfortunately, legislators, even at the international level, are not adapted to the feeling and will of citizens. In Italy, there was a huge turnout for both the referendum on euthanasia and the “Liberi Subito” regional bills, an initiative of the Luca Coscioni Association. Party politics and ideological, paternalistic, ethical-state politics do not know how to respect people’s will. Removal? Hypocrisy? Paranoia? Lack of narratives? Let us inform, let us self-determine. It is an act of relating to oneself and to one’s neighbor that makes one feel lighter, as more free. The international situation is varied (recently Ana Estrada, a Peruvian psychologist, ended her own suffering through euthanasia). There are both European-level initiatives and international associations. (Eumans, WFRTDS)
More you wish to add I would like to add a notation about owning one’s body, even with the perspective of organ transplantation, organ donation, or donating the body to science. It is about donation, therefore generosity. Some seemingly trivial questions. To whom does my life belong? What do I do if “something” happens to me? Am I selfish if I want to decide? Who can I talk to about what I wish for, including for other people? What will become of me if and when I cannot choose? Do I feel at the mercy of all the events that might happen to me? Can I shelter myself and protect the dignity of my final life? Does my life belong to me? My body, that is, my greatest asset, is soma and sema; to put it crudely: both prison and instrument of meaning. During a Green Cross shift, the ambulance worker tells me about her own sister, who recently died. “You know, you can donate everything. Even when you think you’re all broken down. You can donate even just your skin.” IN high words: let’s not throw away, even when dead. We must be aware of our rights, taking on the burden of our responsibility and freedom. My life that is, my body belongs, physiologically and ontologically, to me. Of course they are available to me. Until a few years ago, organ donation might have seemed like a cannibal issue. For some time now, however, at the renewal of the identity card -electronic- it is asked ex officio. I am sure that self-determination at the end of life will also be embraced as the crowning achievement of a free existence. In the scientific literature we are slowly beginning to talk about proportionality and appropriateness of care. It will also be a practice necessitated, of course, by the aging population and the composition of single nuclear families. We need to tell ourselves even in our apparent miseries, which, however, are perhaps the result of choices and events that do not adhere to our existential reading. Moving on. To date, only 5 percent of people in Italy take advantage of the right to file Advance Treatment Arrangements. It is a right, obviously free, therefore a duty. There is a national number that provides information on what is legal in Italy. At a conference centered on self-dermination, I am generously hosted, through an association network, by a woman with whom we did not know each other. After introducing ourselves and showing me the beautiful musician’s home, I listen to her spontaneous narrative. She has been widowed for a few months. Her husband, an organ donor, had entered the hospital for a seemingly simple operation. Unfortunately, he catches a serious infection. He passes away in a short time. The woman immediately receives a phone call: because of the infection, even corneas cannot be donated. I listen to this narrative in the dimness of the apartment. I am in front of an apparent stranger, who tells herself intimately. She tells an apparent stranger about the extreme pain. I ask her husband’s name and repeat it. I feel mute anger, but I know that this narration is an opportunity for meaning; I want it to be. At the end of my short stay, to say goodbye, we finally embrace. We exchanged cloth bags, white, as a spontaneous gift.
