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  • Ruth Mateus-Berr

WHAT MAKES CANCER DANGEROUS?

Knowledge Huddle of Grasp Network



Ewing Sarcoma © Ruth Mateus-Berr


Cancer is considered a threat by almost everyone. It just happens, without us having much influence over it, is invisible (with few exceptions), makes people suffer, and everyone is scared of a fatal outcome. However, it is not one disease but many, and each and every one of them is different in origin, molecular pathogenesis, symptoms, course of disease, and outcome. So, what unifies this large group of diseases, and why are we so scared? What makes cancer dangerous, and what are the dangers? Dangerous to whom - patients, relatives, friends, society, economy? How serious are these threats and how might we successfully fight them?

In Covid-19, lacking the possibility of personal interaction, Grasp Network organized a virtual Knowledge Huddle as part of the research project, funded by the FWF-Austrian Science Fund[1]. In order to test Knowledge Huddles as possible adapted dissemination possibilities for the public by using artful thinking, GRASP invited all participating artists and scientists to explore its facilities. The group (GRASP TEAM and ART4SCIENCE TEAM) focused on the question “What makes Cancer dangerous?” GRASP wants to bring people into a reflective process – and that doesn’t always mean that we share opinions on the topics. It’s not a question of having one truth about the subject, but rather going around the topic and trying to get all perspectives. The researchers had a strong scientific point of view. Other participants brought to the conversation aspects regarding the effects of cancer to social, societal and family dimensions.

Fear, the determining emotion

The group started by discussing the origin of fear in relation to cancer: fear of something that we do not know, something invisible; fear of losing control of tumor cells and not knowing what will happen. The aspect of uncertainty: what will happen, how to cure the disease in the best possible way. Even if the cancer is cured it is never certain that it will not return. Furthermore, knowing too much about cancer can make people pessimistic and fearful. Also important is the insight that cancer is not singular, but a set of many different diseases and therefore complex to face.

Another aspect is that having cancer means having a “deadline”, without knowing exactly when it is. But with cancer, it is certain that it will indeed happen. On a personal level it’s also a matter of processing grief – and this is grief about one's own death. That is very heavy, and the psychological pain is very intense, too, in addition to the physical pain and social suffering. We are longing to control it, as cancer is life threatening, something that goes beyond your own body, but is also transpersonal. Fear itself is believed to be really dangerous. One can be scared that one may get cancer or that someone close may get cancer. Fear makes everything a bit more difficult. Uncertainty about length of sick leave, decreased manpower, and economic loss all constitute a fear that is too strong and damaging to us. Cancer is a threat of fuzzy uncertainty. It may lose at least some of its potency when we lift the curtain and manage to make the threats more tangible, as one of the scientists said during the Huddle. That's why we need more knowledge on how cancer actually acts in our body.

Artful associations

During the Huddle, each participant was asked to select an artwork reflecting their own associations or those of others during the discussions on the danger of cancer. The website containing the artworks differs from huddle to huddle. This time we decided to use the online collection of Museo MADRE in Naples for interaction and inspiration during the Knowledge Huddle.

Successively the participants presented their selected artwork and described the associations: Scientists were looking for “tools to solve the problem”, for example by selecting the work of Carmine Rezzuti, Alfabeto arcaico (2014): “If I put myself in the situation when I have cancer, I put down on the table all the things I know about the cancer and which tools we do have in hand and what we can do about it in a rational way”; or associating the work of Jannis Kounellis, Senza Titulo (2005), which represents an anchor, giving stability within family and environment. “The anchor represents our intention to keep our life as it is, with stability and strength. However, the anchor is very heavy and the wooden floor may break”. Another scientist defines Luciano Fabro´s Il cielo di San Gennaro (2005) as a symbol of emotion and suffering: “there is black, clearly representing suffering and waves representing moments of hope”. The work of Richard Long, Line of Chance (2005) was selected by two members of the CCRI, first as a symbol for metastasis and losing control, the burden of knowledge … further as a symbol for uncertainty as science is about getting to certainty as a representation of both the views of the scientist and the patient. “It’s a closed room, and if you look at the walls, you think you can discern a pattern. But if you keep moving down, you see speckles, and there is no discernible pattern – either because we can’t see it, or because it just isn’t there. But there is a lighted door in the back. And not only that, but there’s also something bright on the left. Maybe that’s an unexpected path, a new way: so this is a more optimistic view”.

The artists chose the artwork of Berlinde De Bruyckere: Aaneen-genaaid (1999), representing the vulnerability while being sick and the process of transformation that happens in the body. The sculpture is unsettling and scary. The work Senza Titolo (2005) by Mimmo Paladino inspired another participant, engaging in scribbles, thinking about how cells transmit through osmosis, asking “Who is doing the master plan for the cells and where they are going?” and believing that the person in the picture is too close to be able to see it. Or Giulio Paolini with his work Dilemma (2005), which shows the different aspects of somebody having cancer. The artist interprets it as an attempt to see everything clearly, but there is always something outside, like the thing on the floor – something that is out of order, not where it should be. This picture symbolizes the fear that something is not in order.

One participant from the Art4science team chose the work of Enza Monetti, The Unknown, symbolizing the idea that “If you look in the mirror, you don’t know what you’re seeing. It’s a tree, which is growing – you don’t know in which direction. It’s evolving, it might be growing branches, losing them, evolving in unpredictable ways.” Also the Tree of Life – much about life and death in general. The branches grow, but not always in a way that you want. Live and death are intertwined and cannot be separated.

Someone from the GRASP group selected the work of Mimmo Jodice, Anamnesi 8, 2014, as cancer represents many enemies and you don't know who you are fighting. The picture represents the emotional fear of a very ugly unseen enemy. Or the artwork Gabriele di Matteo, Prestigiatore (“Ilusionist”), 2002, inspired by the contribution of one of the scientists: you can’t identify cancer. Here, the person is unable to identify the subject. There is confusion. This art-work represents the complexity, the psychology. You can only approach it by approaching the complexity of the subject. The profile is not straight, it is shifted, confused.

The work of David Robbins, TV Family (2014) represents the idea that cancer isn’t only the person suffering, but involves the entire family circle. So, although this is a seemingly “friendly” picture, it reminds us about what is really involved.

Cancer changes our daily lives in many aspects and involves the whole family. Suffering is shared. How can we cope with our changing identity or the changing identities of our loved ones? And what kind of values count in such difficult situations? What role does the family play in this context?

Some conclusions: the Huddle as catalyst of communication and empathy

Huddles make us better understand ourselves, each other and the world that surrounds us. If the chosen question to be addressed by a Huddle carries a negative emotion with it, the output might focus on negative emotions, too. Perhaps that happened in this K-Huddle. After all, cancer is a very fearful topic and this cannot be hidden. What emerged at the end from participants in this Knowledge Huddle was that talking openly about fear related to cancer enables an empathic contact between people and allows them to speak and share in an honest way. This is crucial also for cancer treatment: that is, it helps us to understand the important role played by emotion, vulnerability, listening, and empathy in situations of diagnosis and treatment of cancer. From our point of view, of course, it is interesting to ask how can art open up different approaches and help people get involved and connect better.

Cancer, Dementia, and Covid-19 - the latter made us realize we need to expect the unexpected. Can we handle uncertainty with tools and pattern recognitions of science? Or might seeing different aspects and perspectives empower our dealing with it? How can we cope with losing control? Is this emotion far too close to death? An analytical approach to complexity does not help in unpredictable situations, but what about an interdisciplinary approach?

Participants to the Huddle

Team (scientists):

Eva König (PL), cancer researcher focusing on tumor immunoediting

Eleni Tomazou, cancer researcher focusing on epigenome-based precision medicine

Sabine Taschner-Mandl, cancer researcher focusing on neuroblastoma research

Heinrich Kovar, cancer researcher focusing on sarcoma research

Team (artists):

Christina Carli, Designer

Ruth Mateus-Berr, Social Designer, Artist, Researcher, Art & Design Educator

Franz Reisecker, Musician, Composer

Romana Zöchling, Fashion Artist, Designer

Team (GRASP)

Günter Koch, Computer Scientist

Anja Puntari, Sculptor, Business Coach

Paula Kuusipalo-Määttä, Business Coach

John Favaro, Computer Scientist

Team (art4science)

Teresa Berr, Marketing Professional

Barbara Brunnmair, Science Communication Professional

Lisa Huto, Marketing & Science Communication Professional

Keywords:

Scientists: tools, stability, emotion, suffering, hope, metastasis, losing control, burden of knowledge, uncertainty, pattern.

Artists: vulnerability, transformation, osmosis, masterplan for cells, seeing, different aspects.

Art4sciencemembers: seeing, direction, losing, evolving, unpredictable, life, death, fear, not in order, unsettling, scary.

GRASP members: unable to identify, complexity, involvement of the whole family, emotional fear, enemy.

[1] Science Communication Programme as one of the Outstanding Projects in Basic and Cutting-edge Research WKP 132 “Art 4 Science“, Project-lead: Eva Maria KÖNIG, St. Anna Children Cancer Research Institute (CCRI)– Tumor-Immunoediting

© GRASP network 2018

GRASP network is an officially registered non-profit organisation in Austria