I am lying in bed. It is 4 am. The TV is flickering. I am listening for it, I am waiting for it. Next to me a gentle tossing. Time for suctioning? I go over to the other side of the bed so we can have eye contact and ask my mother if it is time for suctioning. She closes her eyes for a second, indicating that yes, that’s what she wants. I help her place the suctioning tube in her mouth and I switch on the machine. Whirrrr. We maintain eye contact. Whirrrr. Five minutes later she nods with her eyes that it’s enough. I switch off the machine and we prepare to go to sleep again. (Personal diary, Autumn 2010)
My mother, Vagelio, was diagnosed with a fast progressing subtype of motor neuron disease (MND), also known as amyotrophic lateral sclerosis, in the fall of 2008. She showed the first signs of dysarthria in early 2008. Soon after, the rest of her body became weaker and her movements slower. The first function to be affected was her speech and then her arms became weaker, followed by her breathing muscles and legs. Dysphagia, caused by increasing weakness in the muscles involved in chewing and swallowing, made eating difficult. Saliva and food would pool in the mouth, necessitating regular suctioning. She could hold a pen and type on a mobile phone to communicate until a couple of months before she died in late 2010. I have saved thousands of text messages that we exchanged in the years of silence. It happened so gradually, yet so fast, that I cannot remember the last time I heard her voice. Perhaps it was in a phone call when, unable to understand what she was saying, I had asked her to repeat a word a couple of times. Or perhaps it was when she last visited me in the United Kingdom and I was translating back and forth between her and my then partner.
With my mother’s speech gone and her arms getting weaker, soon to be followed by most of her facial muscles, and then her breathing muscles and leg musculature, we (my father, brother, and I) were all at a loss. Family and friends were there to help, each in their own way, but we were all struggling with one big question, particularly my mother and the immediate family: “What now? What can be done now to make life better?” As my mother’s condition progressed, we had to constantly adjust and know how much help she needed: giving any more would take away the physical independence she still had; giving less would not be adequate. We each had our own understanding of the situation and our own ways of dealing with it and constant negotiations were necessary.
Living with an illness often conjures discourses of a losing battle and suffering. What is less evident in the literature is how people can live with an illness, rather than despite it. In this article I discuss certain practices that my mother and people around her mobilised in order to lead to what I have previously referred to as the good, or better, life (Sakellariou, 2015a). Practices of care involve the enabling of processes through which the person survives, both physically and metaphysically; in other words, they enable the creation of an inhabitable world. In Vagelio’s inhabitable word, ideas about pathology and desire interacted to form what Jackson (2012) calls a home in the world. “A home in the world is a place where one can experience intersubjective life and feel recognized as a person” (Sakellariou, 2015b:7), rather than as a representative of a category, such as illness. Vagelio’s home in the world was a place that would allow her to enact her desires about how she wanted to live her life.
Here I tell a story about trying to create a way of eating by remaking what the meaning of eating and food are in acts of caretaking. I see this remaking as a form of creating an inhabitable world. By focusing on concrete practices of care, and describing, however incompletely, what an inhabitable world can look like, especially in relation to food, I aim to raise the importance of practices of care of the self and care of the other for medical anthropologists. I also aim to draw attention to the notions of function and ability, and discuss what it means to can or to cannot eat.
Examining concrete acts of care and how these can lead to the creation of an inhabitable world touches upon questions of central importance in anthropology: What kind of an experience is illness? How do people live with illness? And how can this experience be explored when there is no voice left to tell the story? The narrative presented in this article was told through gestures, notes, gazes, and text messages and was performed through swerving, tossing, coughing, breathing, looking, pointing, and blinking. It was shared during long suctioning sessions in the evening, and while trying to find the best (quicker, so as not to remain without artificial ventilation for too long; not causing too much pressure on the neck; attentive to the weakened swallowing musculature) way of eating.
Creating a Way of Eating
The weakening of the muscles involved in chewing and swallowing made eating an increasingly laborious activity for Vagelio. Dysphagia started with difficulty drinking thin liquids such as water, leading to occasional choking episodes. It soon progressed to the point that food had to be of a uniformly smooth, soft, and relatively thick (but not too thick) consistency; i.e. blended or mashed. When dysphagia affects quality of life and nutritional intake, percutaneous endoscopic gastrostomy (PEG) is often recommended. A PEG is an opening through the abdominal wall and into the stomach through which people can receive food, water, and medication. It is standard practice in MND and can lead to improved nutrition. Vagelio’s desire was to keep her body intact, which meant no PEG, although PEG was recommended soon after diagnosis. This was a desire that could lead to malnutrition and perhaps to starvation.
As my mother’s condition progressed, my father, brother, and I had to help to create a way of eating. Eating can be a way to enact care and reconfigure human interactions (see for example Appadurai, 1981, and Mol, 2014), through practices that involve the preparation and consumption of food. By eating I refer both to eating as an activity and to food as a substance.
First, it was enough to help Vagelio cut her food in bite-size pieces. Then somebody had to carry her plate to the dining room. Later on, somebody had to always be there with her because of the fear of choking (I twice had to perform the Heimlich manoeuvre). When Vagelio could no longer eat solid food, initially she drank a high-energy food supplement into which she mixed other supplements. Later on somebody else had to do the mixing. Then, as the muscles in her forearms and her hands became weaker, the help needed was about positioning the mug in her hands. When her arm and shoulder musculature were too weak to help her lift her arms so that she could reach her mouth, we would first help Vagelio flex her forearms and slightly elevate her arms and then place the mug in her hands. Weakened neck musculature later on meant that two people were needed during meal times; one to help with the mug and positioning of her arms and forearms and another to protect her head by holding one hand behind it to prevent it from suddenly falling backwards (collars and chairs with neck support were not comfortable or suitable).
Vagelio constructed hope not through the medical imaginary, but through the ritualisation of technologies of self-care which seek to locate illness and direct healing accordingly. Despite the diagnosis, Vagelio often attributed dysphagia to stress, to give just one example. MND might be incurable, but stress is not. Locating the problem not in the degeneration of neurons, which cannot after all be easily observed, but in lips and a tongue that trembled due to fasciculations, and positioning these fasciculations as a psychosomatic reaction to stress, meant that healing became a question of addressing stress. Vitamins and other supplements became important elements in her increasingly shrinking daily repertoire of activities. Using these supplements entailed selecting them, and preparing them for consumption, by, for example, mixing them in fruit juice or crushing them. The first supplement was vitamin C, to avoid catching a cold. Then, it was vitamin E when we were told it might have some positive effect. Co-enzyme Q-10, pholic acid, and B-complex were added to the mix later on, as were various oils, such as linseed oil.
The process of supplement selection entailed two separate parts. One part was rooted in Vagelio’s experience of MND, her day-to-day life with it. Vagelio directed this part of the selection. When she noticed a new symptom, a new weakness, she would try to address that through the addition of a supplement to her diet. Vagelio sought a cure by visiting health food and supplement stores, and consulting with nutritionists and practitioners of complementary and alternative medicine. The other part was rooted in her emerging knowledge about the mechanisms of the disease and was guided by the medical team who observed Vagelio, as well as by my brother and I. Pre-clinical trials of the co-enzyme Q-10, for example, show potentially positive effects in slowing down the process of neural degeneration and this clinical knowledge then translated into recommendations from the medical team.
In order to retain adequate nutritional intake, Vagelio started receiving high-energy liquid meal supplements. These came in different flavours: vanilla, chocolate, and strawberry among others, all of them sweet, resembling a milkshake both in colour and consistency. However, the supplements did not taste good, and we had to find ways to make this mixture more palatable; after all, food is supposed to taste good (Mol, 2014). We tried to do this by adding fruit juice or cheese to give it a different taste, for example. We had to mix all the different capsules, pills, oils, and nutrition supplements in a cup full of a liquid meal substitute to produce a thick drink of brown or yellow colour. The drink had a strong smell, because of the co-enzyme Q-10. The capsules had to be pierced so that the liquid contained within them would come out; the pills had to be crushed and the oils had to be measured. Vagelio performed all this piercing, crushing, and measuring while her dexterity allowed her to do so, and then the family would carry it out, each of us in our own way — by using a hand blender, by mixing everything manually, or by using a combination of spoons and forks to crush in a little bit of water first before adding more liquid.
To some extent, all these supplements addressed the need to create hope that things did not need to change, that everything would be all right in the end. Their use was not “about addressing the effects of illness on the physical body [but] about addressing its effects on the lifeworld of the people affected by that illness” (Sakellariou, 2015c:7). In other words, I do not think Vagelio chose those supplements in order to get better, but in order to take care of herself. In the face of an incurable illness, where the only known medication (Riluzole, which Vagelio was receiving) cannot stop or even considerably slow down the disease progression, how can people maintain hope? What practices do they engage in as part of this process and what effects do these practices have? Similarly, the practices guided by the emerging biomedical knowledge (the use of vitamin E for example, which according to pre-clinical trials might protect neurons from degeneration), were perhaps used in order to construct care. If, for biomedicine, the main site of intervention is a disease, then acts of care need to target that entity. Of course, this was an expensive way to create hope, costing an average of 200-300 euros a month (215-320 USD).
Questions kept surfacing: Is this what a good life is about? Is this a world one can live in? For Willems (2010:270)
the migration of advanced technology from the hospital to the home implies the migration of a (dreaded) form of dying to the home. In this form the body has lost all its capabilities and needs support for the most basic functions, but the mind lives on — synchronicity is lost.
The PEG can be seen as one of these technologies; it is a solution to the consequences of dysphagia, but also a reminder that the body is not functioning the same way it used to. The way the PEG is perceived is likely to lead to different decisions. DelVecchio Good (2007) notes that it is hard to not use procedures and processes deemed to be life enhancing once these become widely known and available. People, however, choose those technologies they can picture themselves using; they construct an imaginary future and choose those technologies that seem compatible with that anticipated and desired future. Some procedures can be associated with a dreaded rather than a desired future, especially when desire seeks more than survival. A good life can sometimes be about denying those processes that might attend to clinical symptoms of a disease.
What kind of future is PEG associated with? For my mother it was a dreaded future that had to be avoided. It represented a process that “signifies a radical change of what bodies are supposed to look like, and can make people feel subjected to medical technology” (Sakellariou, 2015c:5); an aberration of what the body should look like, and an affirmation that disease is winning over the body. Research suggests that she was not alone in deciding against having a PEG (Albert et al., 2001). Was there a way that PEG could have been introduced differently that would have made her decide to have it? Would a PEG have made a difference that she would have welcomed? If the process was carried out without complications and she survived it, having a PEG would have led to increased and more effortless nutritional intake. Would it however have led to the construction of a better life, to a future approximating more closely that desired future and a more inhabitable world, albeit perhaps one of a very different nature?
Jackson’s reflections on the “tension between life as thought and life as lived” (2014: 43) are relevant here. Vagelio’s choices seemed to be guided by an unending tug of war between trying to avoid a dreaded future and trying to construct a desired one. Most choices had a desired and a dreaded effect and it was a fine process deciding what to do, based on which effect was stronger. And here lies the paradox of this tension: in the construction of an inhabitable world, people choose those practices or ways of living that seem better than others. When something like a PEG is chosen, it cannot be undone. So, the border between practices as thought and practices as lived sometimes cannot be crossed and some practices will remain forever separated. Selecting a PEG, as an act of care that can lead to a certain kind of inhabitable world, means that in that inhabitable world receiving adequate nutrition in a comfortable way is more desired over a body-without-gastrostomy.
The creation of an inhabitable world, one that a person can call home, is not an abstract process but one grounded in concrete acts of care. Das (2014) highlights the importance of acts that might often appear to be mundane for the creation of a way of living. What acts are important depends on the context. Vagelio and the people around her remade what eating as an activity and food as a substance were about, how they were constituted, and how they were practiced. We created an inhabitable world by experimenting with the notions of what Vagelio could and could no longer do. This inhabitable world was made and remade daily. It involved flavours (sometimes strawberry, sometimes vanilla, sometimes blue cheese) and sounds (the whirr of the suctioning machine after meals or the motor of the hand blender).
A focus on how people negotiate the creation of inhabitable worlds can enrich anthropological understandings of the enactment of subjectivity and the ways people create a place of care and belonging to build a home in the world. Such focus can also help illuminate the different worldviews that people enact. Whether having a PEG, for example, is a good or a bad decision is ultimately a decision about what one’s inhabitable world should look like. For Jackson different worldviews can be viewed “not as theories about the world but as existential means of achieving viable ways of living in and with the world” (2012:123), or as different and complementing ways of constructing a life one is satisfied with. This leads to two questions of central importance to anthropology: How can different worldviews best inform each other to construct a good life? And how can we be sensitive to what remains unspoken and what cannot physically be spoken? The creation of an inhabitable world depends on people collaborating and negotiating joint action into a future, which can be both known and unpredictable.
Albert, S., Murphy, P., Del Bene, M., Rowland, L., & and Mitsumoto, H. (2001). “Incidence and predictors of PEG placement in ALS/MND.” Journal of the Neurological Sciences 191 (1-2):115-119.
Appadurai, A. (1981). “Gastro-politics in Hindu South Asia.” American Ethnologist, 8 (3), 494-511.
Das, V. (2014). Action, expression, and everyday life; Recounting household events. In V. Das, M. Jackson, A. Kleinman, and B. Singh (eds.) The Ground Between; Anthropologists Engage Philosophy (pp. 279-306). Durham: Duke University Press.
DelVecchio Good, M. (2007). “The medical imaginary and the biotechnical embrace; Subjective experiences of clinical scientists and patients.” In J. Biehl, B. Good, and A. Kleinman (eds.) Subjectivity; Ethnographic Investigations (pp. 362-380). Berkeley: University of California Press.
Jackson, M. (2012). Between One and One Another. Berkeley, CA: University of California Press.
Jackson, M. (2014). “Ajàlá’s heads; Reflections on anthropology and philosophy in a West African setting.” In V. Das, M. Jackson, A. Kleinman, and B. Singh (eds.) The Ground Between; Anthropologists Engage Philosophy (pp. 27-49). Durham: Duke University Press.
Mol, A. (2014). “Language trails: ‘Lekker’ and its pleasures.” Theory, Culture & Society, 31 (2/3), 93-119.
Sakellariou, D. (2015a). “Towards the construction of a nicer life; Subjectivity and the logic of choice.” Anthropology in Action 22 (1), 46-53.
Sakellariou, D. (2015b). “Home modifications and ways of living well.” Medical Anthropology: Cross-Cultural Studies in Health and Illness. In press. doi: 10.1080/01459740.2015.1012614
Sakellariou, D. (2015c). “Enacting varieties of subjectivity through practices of care; A story of living with motor neuron disease.” Qualitative Health Research. In press. doi: 10.1177/1049732315584744
Willems, D. (2010). “Varieties of goodness in high-tech home care.” In A.
Mol, I. Moser, and J. Pols (eds.) Care in Practice; On Tinkering in Clinics, Homes and Farms. New Brunswick: Transaction, pp. 257-276.
Dikaios Sakellariou is a lecturer at the School of Healthcare Sciences, Cardiff University, United Kingdom. He has co-authored and co-edited A Political Practice of Occupational Therapy and Occupational Therapies without Borders (with Nick Pollard and Frank Kronenberg), and Politics of Occupation-centred Practice (with Nick Pollard), on the enactment and enablement of daily life and the experiences of disability and disablement.
Inhabitable Worlds is a series that examines the theoretical tools and approaches that scholars bring to the study of disability in the social sciences and humanities. It is edited by Michele Friedner (Stony Brook University) and Emily Cohen (New York University).