Linda Nesby explores the emergence of the “ugly pathography” in contemporary Scandinavian illness narratives. This essay was first presented as part of “Narratives of Illness”, the SELMA Medical Humanities Seminar Series at the University of Turku, Finland, convened by Marta-Laura Cenedese and Avril Tynan.
Expectations of how the ill should behave have changed throughout history. The traditional approach was for the sick person to take on a positive and heroic role, making descriptions of illness more beautiful and more harmonious. Visual representations of illness, from Murillo to Goya to Munch and Schjerfbeck (to cite only some of the most famous), show the ill person lying in bed with a peaceful expression––the pain, fear and discomfort invisible to the viewer, hidden by a sense of noble endurance and stoic acquiescence. In contemporary western society demands are placed on patients: “The expectation of our culture is not only that the sick will continue to function as best and as long as they can (modern pharmacology makes this possible) but that their illness will serve as an opportunity for bravery and heroism” (Hawkins 1999). However, there seems to be an increasing tendency in contemporary Scandinavian narratives of illness to present negative emotions in relation to illness. Increasingly, illness is now being described in terms of the patient’s anger, anxiety and bitterness, or what we might call ugly feelings. In this short essay I will give some examples, and present some possible explanations, of this development.
Depictions of noble, almost sublime patients have a long history and are found in cultural expressions such as that of Mimi in Puccini’s opera La Bohème, who, when dying of tuberculosis, comforts those around her. But such heroic renderings of illness and death are also present as a modern literary phenomenon. Reidar Ekner’s book from 1974, Efter flera tusen rad [After Several Thousand Units of Radiation], is one of the earliest examples of a Scandinavian pathography and describes just such an exalted patient. The book consists of a cycle of poems about the critical illness of Ekner’s daughter, Torun, who died of cancer at the age of eight. It is a Swedish text of just over one hundred pages, divided into four parts. Each part consists of lines of free verse which poetically render the daughter’s end-of-life situation. The father tells how his daughter was diagnosed with cancer at an early age, but was treated, seemingly cured and sent home to resume life without illness. But after a year without symptoms, there are signs that the disease has returned. The father’s poem about his daughter is full of despair and hopelessness, yet the little girl is portrayed with an admirable, almost inhuman, mental strength and maturity one does not expect of a child. A sequence in the cycle of poems dated the 6th of June 1973 runs as follows:
You have given light and joy to your family
And you still do, you have an inner strength that comforts
those around you
– with big eyes you look at the grown-ups
who get annoyed like children,
they cry, moan and lose their grip.
Things are tough for you, but you take it in your stride.
When I ask how it feels,
You answer “Not too bad” even if you’re in pain
And “Pretty good” when the pain
eases off. You overlook your pain:
“Bring me my drawing book, I want to draw!” Your hand is shaking,
but you can still manage it sometimes.
“This one is for Grandma.” Life goes on, here and now,
We only have this one life. Teach me
Your patience, your perseverance.
Reidar Ekner’s cycle of poems about Torun is an early contemporary example of the tendency to present sick people as possessing heroic qualities. Ekner’s sometimes prosaic descriptions of treatment and practical tasks transcend the sadness and complaining and bring us into an everyday sphere that creates a more holistic but nonetheless strikingly beautiful and flawless image of the sick – and eventually dead – child.
A recurring theme in many autobiographical illness narratives is that the disease represents a form of physical, sometimes mental, decline that at the same time provides the patient with positive insights. In the novel Pust for meg [Breathe For Me], by the Norwegian author Cecilie Enger, this view is both depicted and confronted. In a conversation between the young artist Synne and the middle-aged doctor Carla, diametrically opposite views of the significance of the illness are presented. Synne represents ideas about growth, maturity and insight as a result of the experience of a severe illness. She says:
For many people, their illness gives them an insight they did not have before they fell ill. Consequently, we may say that a disease or an injury – just like art – can somehow clear our eyes so that we can see other things when we are ill.
However, Carla, the older and more resigned doctor, is sceptical. She says:
I don’t agree that illness necessarily brings great insight. I feel I can see just the same variety of insights in sick people as in healthy people. And what about people who are ill for years, who are reminded of their illness every single day? They don’t forget it, sitting in a wheelchair or full of cancer or being ill because they miss their child or their father, I said. Perhaps the only insight we all share is that we’re basically all alone with our fate.
The opposing views of Synne and Carla are symptomatic of a development in the pathographic genre where the focus on the sick person as exceptional and heroic is toned down in favour of an everyday description that explicitly presents emotions such as fear, bitterness, envy and anger. I have chosen to call such texts ugly pathographies. These emotions are discussed in depth by Sianne Ngai who, in Ugly Feelings (2005), gathers depression, anger and envy under the umbrella-term of the seven “negative feelings”.
There are several examples of this turn towards negative/ugly feelings in Scandinavian descriptions of illness, including the final novel by the Norwegian-Swedish author Beate Grimsrud, Jeg foreslår at vi våkner [I Suggest We Wake Up] (2020), who was diagnosed with breast cancer in 2018 and died in July 2020. The novel’s main character, Vilde Berg, a middle-aged playwright who has been diagnosed with breast cancer, expresses both envy and irritation for the healthy person who possesses something desirable that the sick person does not have, namely good health. The ill person may envy the person who is healthy, or at least less ill. Both perspectives are expressed by Vilde; in the following passage, we are privy to her ugly feelings and thoughts against the “less-ill” patients:
She is jealous of people with mild breast cancer. Cancers that do not spread to the lymph nodes. People who do not need chemotherapy. Those who only get radiation treatment and are encouraged to work full time at the same time. Close your eyes and get radiation treatment for 15 minutes every day before or after work. Much like going to the gym. Or dropping by the hospital during the lunch break for five weeks. You may not even need to tell your boss that you have lost your breast. Maybe they just removed a slice of cake. It was all over pretty quickly. You look back on it with a slight grimace. The statistics are on your side. Do people with mild breast cancer even need to be afraid? Is there a scale for reasonable emotional outbursts?
The demand and supply of beautiful illness stories shows how the literary market helps to shape texts. The publisher acts as a gatekeeper for the literary project, and publishers and authors negotiate with each other to create a readable and saleable product. The author has a book she wants published, the publisher wants a book that will make a profit, and both of them want the text to be read. In the case of illness narratives, the brutal reality must be toned down so as not to offend the readers. There are various ways to do this, but generally it is a matter of not placing too much emphasis on the negative and difficult aspects, but also including optimism, hope and positive universal values that translate stories of physical or mental deterioration to stories of personal formation and growth. At the same time, there is now increasing openness about things that were previously taboo, including illness and death. This has, in turn, opened up the space for higher complexity within illness narrative. The increased availability of the Internet has given us access to many unfiltered and unedited personal stories and so-called “reality literature,” with its unclear distinction between fact and fiction, has created readers with a higher tolerance and even expectation of authentic descriptions of challenging life situations. Perhaps depictions of illness that present anger, sadness, hatred and envy are a response to these readers’ expectations, but they are also a way for seriously ill people to express the full range of complex emotions that accompany their life altering experience.
Linda Nesby is associate professor in Nordic literature at UiT The Arctic University of Norway. Recent publications are “Why do we read illness stories? Paul Kalanithi’s When Breath Becomes Air (2016) read in the light of Rita Felski” (co-authored with May-Lill Johansen) (2019), “Tuberkulose som tegn på virkelighet i Hamsuns Victoria (1898)” (2020) (Tuberculosis as a sign of reality in Hamsun’s novel Victoria (1898)) and Sinne, samhold og kjendiser. Sykdomsskildringer i skandinavisk samtidslitteratur (Rage, Relations and Celebrities. Contemporary Scandinavian Stories of Illness – in print at Scandinavian University Press). She is leader of the interdisciplinary research group “Health, Art and Society” at UiT.
Ekner, Reidar. Efter flera tusen rad. Stockholm: Författarförlaget, 1974
Enger, Cecilie. Pust for meg : Roman. Oslo: Gyldendal, 2017.
Grimsrud, Beate. Jeg foreslår at vi våkner. Roman. Oslo: Cappelen Damm, 2020.
Hawkins, Anne Hunsaker. Reconstructing Illness. Studies in Pathography. West Lafayette, Ind: Purdue University Press, 1999.
Ngai, Sianne. Ugly Feelings. Cambridge: Harvard University Press, 2005.