Artistic Research on the Edge. Poetical Investigations on the Margins of Medicine and Mythology






This project at the intersection of medicine, anthropology, poetry and mythology investigates a strange phenomenon, referred to as "autoimmunity". It aims to contribute to the solution of a "cruel mystery": This ascription was coined by the Lupus Foundation of America to characterise the autoimmune disease called lupus. On their Website they explain:


Lupus is a cruel mystery we must all solve together. 

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery  because it's hidden from view and undefined, has a range of symptoms, and strikes without warning, and has no known cause or cure. (


What is lupus?


SLE (Systemic lupus erythematosus) is a chronic, inflammatory, rheumatic disease; it is rare by definition, with 15 to 50 cases per 100 000 people. SLE comprises a broad spectrum of symptoms / manifestations that can vary profoundly between the individuals concerned. Most common are experiences of fatigue, flu-like symptoms, joint pains, skin inflammations and a hypersensitivity to sunlight. Furthermore, all inner organs (especially the kidneys) and the nervous system can be affected. Cause and pathogenesis of lupus are still unknown. This is the reason why there is no cure, no prospect of healing until now.


My project aims at generating new knowledge in regard to these open questions. It comes up with a new thesis concerning the understanding of autoimmunity and especially of SLE. The thesis is developed in different ways following different approaches of artistic research. The thesis in a nutshell understands autoimmunity as the expression of transformative processes. These processes aim at a metamorphosis of those affected by the disease. This ongoing metamorphosis, causing various physical and mental effects in the afflicted organisms, is driven by a plan; it is about the emerging of a new entity: the "Lycanthropus erythematosus".


Lycanthropus erythematosus


The term is derived from the name of the disease in focus, lupus erythematosus, that is composed of the Latin word "lupus" for wolf, and the Greek word "erythrós" for red, redness. The other source is the term "lycanthropy" (consisting of the greek words "lýkos" for "wolf" und "ánthrōpos" für "human"), describing a phenomenon also known as werewolfism: the magical ability to shape-shift and assume the form and characteristics of a wolf. The term "clinical lycanthropy" refers to the delusion that one is in the process of transforming into a wolf or has already assumed the characteristics of a wolf. Finally, the denotation "Werewolf Syndrome" points to a rare medical condition characterised by excessive facial and bodily hair growth. The name of this genetic disorder is "hypertrichosis"; in the 19th and early 20th century there were a view known persons with hypertrichosis who performed in circus sideshows. Those performers were promoted as having distinct human and animal traits at the same time. One of them was "Haarmensch" (i. e. a person covered in hair) Julia Pastrana, whose picture can still be seen in the "Prater Museum" in Vienna. 


The hybrid character of these "Haarmenschen" or "wolf men" leads directly to the framework of the project: Amerindian multinaturalism, assuming that all cosmic entities are in the same way spirited and human. According to a multinaturalistic point of view the differences between all beings (plants, humans, animals, ghosts, ….) are the results only of their different basic physical configurations. But the bodily dimension is not considered to be fixed or constant; an important multinaturalistic notion is the changeability of the physical, the transformative qualities of bodies.


So multinaturalism provides an appropriate background for this hybrid, human-animal, shapeshifting being called Lycanthropus erythematosus: a being that by its mere existence questions the common difference between humans and animals as well as the special role humans attribute to themselves as being "more" than, as being "on top" of all other beings.






The research for the project aims at finding and synthesising relevant information regarding the background and the development of this newly evolving species in the fields of immunology, clinical pathology, philosophy, cultural history, literature and mythology. The two parts of the project presented in this exposition are dealing with the subject on a pictorial and poetical level, they show the outcomes of my research and the development of my thesis with the means of photography, poetry and free association.



Autoimmune Transformations


The series of collages, titled Autoimmune Transformations(see also the images on the right side), is created in the tradition of the grotesque, dealing with the deviant body with means of distortion, alienation, and, last not least, stultification – in reference to the carnival as the "lived grotesque", as Michael Bachtin1 pointed out. The collages also reflect the key processes of autoimmunity: ELIMINATION (deletion, extinction), LYSIS (dissolution, liquidation), and PHAGOCYTOSIS (assimilation, incorporation).



Autoimmune Poetry


The lyric series Autoimmune Poetry comprises a collection of autoimmune poems revealing a poetical / language based method of analysing the collected materials in the course of the project. The results are contingent on the dynamics between letters and the unforeseeable synergies produced by new combinations of words and fragments of sentences.


The autoimmune poetry series was generated by employing a computer algorithm that allowed to randomly confront passages from different text sources following different patterns of how the words were selected and combined. The sources were paragraphs from medical papers on autoimmunity, SLE and the immune system, from patient guides and information booklets, and lines of self written poetry on the subject. The final production stage consisted in editing the outcome of the computer processing by following the demands of the words and the emerging of new meanings.





I present these findings as a person affected by the disease SLE, but also as an artist, scientist and writer. I treat myself as a specimen, and at the same time I am the researcher, so in this regard I follow an anthropological tradition called "autoethnography":


Autoethnography is an approach to research and writing that seeks to describe and systematically analyse personal experience in order to understand cultural experience; it challenges canonical ways of doing research and representing others and treats research as a political, socially-just, socially conscious act. […] Thus, as a method, autoethnography is both process and product2.


The process-product-concurrency of this method applies very well for my way of proceeding in research – and for the strategies I employed to document, analyse and interpret the results of the research.




Final Remark: Ich bin das sinnierende Monster!

Collage: "Jelly Infusion", by Barbara Macek (2019)

Collage: "MRT Distortion", by Barbara Macek (2019)