A Wednesday in May 2017, Vienna, Austria
The door opens. Behind it is Frau Schöbel, a tiny woman in her early seventies.[1] Through her glasses, her eyes are piercing. Her lipstick is impeccable and matched to the scarf tied around her neck.
Frau Schöbel is one of the people I met on the dialysis unit at the City hospital in Vienna. Tuesdays, Thursdays, and Saturdays, an ambulance drives her to the unit to “wash” her blood for four hours. Nurses connect a catheter that has been implanted into a major vein at her chest to a machine that extracts excess liquid (what Frau Schöbel has had to drink during the previous 48 hours) and waste products (such as phosphor when she had a slice of apricot pie). The treatment replaces what Frau Schöbel’s kidneys have ceased to do eight years ago. When she was 65, she entered, what her doctor called, the “end stage” of chronic kidney disease. Under “further diagnosis” her medical record lists multiple myeloma (which is a cancer of blood cells), lung cancer, and uremic polyneuropathy (a loss of sensation in feet and legs and a side-effect of chronic kidney disease).
Frau Schöbel is sitting in a wheelchair when I meet her which she carefully steers into the kitchen of her apartment. She offers me a coffee. I carry it while she drives further into the living room. We install ourselves at the dinner table.
“Leaving the apartment without lipstick? Impossible, my dear! Even when I get the newspaper from the block’s entrance on Sunday mornings, I paint my lips. Only maybe… for the cellar… I don’t.” Frau Schöbel, I learn, was the head of Human Resources of a major Austrian company where she regularly organized flea markets for its 1,500 employees. In her free time, she often dined out with her husband, and went travelling with her best friend. “China, Brazil, Mexico… Thailand, Malaysia… and Africa! What was it again that we did in Africa? Oh yes, Egypt and Tunisia!”
Her everyday life looks very different now. Five years ago, her best friend died. Her husband, who was diagnosed with Parkinson’s and Alzheimer’s disease was falling more and more, leading to her putting him into a nursing home. “I was deporting him, I was! But he was falling so often and I couldn’t get him up anymore!” Last time she visited him, his shirt was full of coffee from breakfast, although it was already evening. His lap and the floor were covered with curds of cottage cheese. “How can you serve this to sick people? Even healthy people spill half of it! I got so upset!” She pauses. “Now, I no longer go there. He doesn’t recognise me anymore anyway.”
On Mondays, a social worker picks her up at her flat. He pushes her in her wheelchair down the street to a centre that offers activities for the elderly. Newspapers lie out there, quizzes and handicrafts are on the programme. “Around fifty people come there. Out of them, ten are a little bit more normal. The others sleep or stare. It’s horrible!”
On Fridays, the in-home caregiver cleans her apartment for two hours, does the laundry, and takes care of other chores.
On Wednesdays, nothing happens. “Sometimes I take the walking frame, walk around the block and go to Billa [the local supermarket]…With the walking frame, I still manage to walk a little, but not for too long… At Billa, I always end up buying too much. When I return, I can’t carry my groceries up the two flights of stairs. They are too heavy.”
“And what will you do for the rest of the day?”, I ask her as I am leaving. “It’s Wednesday, which means the new TV-Woche [magazine] has come out. I’ll go through it. Some channels I cross out immediately. Other programmes, which are interesting, I circle. I never used to watch a lot of TV. I always scolded my husband for turning it on. And now… Now…”
Patients on dialysis in Europe and Northern America suffer in a myriad of ways, as has been highlighted by Ciara Kierans (e.g. Kierans and Maynooth 2001), Sharon Kaufman (e.g. Russ, Shim and Kaufman 2005), Lisa Gordon (2001) and others. They endure physical pain when stuck by the needle of a catheter that has become set, or - if they have fistulas - two needles, at the beginning of each dialysis run. They go through waves of nausea and cramps that may set in during these runs. They have “to do time” (Russ, Shim and Kaufman 2005, 305) on dialysis in order to gain time. And, they experience the effects of illness itself, the side effects that occur and the absence of familiar sensations like urinating, eating and drinking freely. For younger patients who are waiting for a transplant, life is “a ‘life on hold’, oriented toward the future” (Kierans and Maynooth 2001, 245). For elderly patients who do not qualify for a transplant or do not want one (Gordon 2001) life becomes a life that is prolonged through treatment while at the same time being without an imaginable future outside of it. It is a life with “no end, and the ends of hope” (Russ, Shim and Kaufman 2005, 308).
Frau Schöbel, I noticed during our first encounter and on the dialysis unit, was suffering less from the dialysis treatment itself, which filled her Tuesdays, Thursdays and Saturdays. Rather she suffered from the side-effects of chronic kidney disease, which had reduced her mobility, the loss of significant others to disease and death, and a welfare state that took care of its elderly citizen by caring for some in nursing homes that were understaffed and only provided task-oriented support or “entertainment”. Her loneliness was palpable.
A Wednesday in October 2017.
Frau Schöbel opens the door. She is wearing a knitted top with pearl buttons. Her toenails are painted red. As she starts turning around her wheelchair towards the kitchen, I notice her perfume.
Once we have settled around the dinner table, Frau Schöbel starts recounting what is going on in her life. “I have participated in the [Nordic] Walking at the daycare centre twice. We walk down the alley, make a round, take a break at the park bench and return. It’s far. For me, it’s far. It’s almost a one hour walk. I am not [Nordic] walking, I am using my walking frame. I am the first one to start and the last one to return. But the therapist is nice. It’s good!” We venture that this will help return the strength in her legs which she used to have but lost in the year in which she started dialysis treatment.
“I do like to dine out at the Casino sometimes, you know,” she explains. “I need to have something that makes me… Otherwise it’s completely…” She has gone there twice since we last met. The first time, she won 1,000 Euros, the second time she left when she had lost 100 Euros. “Maybe I would have won again, who knows?” I inquire how she had gone to the Casino. She had not chosen Wednesdays, which would have been Women’s day, but days on which she felt well. She had ordered a taxi, which drove her from her flat in one of the newer, outer districts of Vienna to the city centre in the first district. “I still had to cross the Kärtnerstrasse, which exhausts me. When I’m inside, I am already tired. I first sit down in the restaurant, where I dine. I like that. Four courses. With everything around. That’s nice!” With her walking frame, she does not get through to the tables. So, she sat down at one of the machines. “They have machines with ten, twelve games on them. With wolves, and chickens, and what not!” She beams.
“I need to fetch the junk mail in my letter box,” Frau Schöbel states as our conversation comes to an end. She drives to the door. I collect my voice recorder, put on my coat and follow her. She grabs her keys, puts them into her pocket, stands up, opens the door, and slowly walks towards the stairs. She grips the railing to the right side with both hands. I close the door and follow her. She puts her left foot on the first step, then the right foot next to it. The second step: Right foot, left foot. The third step: Right foot, left foot. In this way, she descends the first flight of stairs. The second flight offers a railing to the right and the left. Frau Schöbel grips them both, puts the left foot on the first step, then the right one on the second step. “Like an adult!”, she states and carefully places the next foot on the next step. We arrive at the ground floor. Already on the phone, when we had scheduled our coffee, Frau Schöbel had told me that she would receive an electric wheelchair soon. “Over there is the cellar storage space where I will park my wheelchair!” She walks towards the storage, unlocks the door and shows me, next to her walking frame, the empty space.
The wheelchair, she had pointed out, would allow her to do her groceries not only at Billaaround the corner, but also at Hofer[an other local supermarket] which was further away. And it would even take her to the Donauzentrum, a large shopping mall in the outer district.
Chronically ill patients, Jeannette Pols (e.g. 2014), Annemarie Mol (e.g. 2008), and others have emphasised, develop techniques and knowledge to interpret, appreciate and shape their daily lives with disease. They coordinate, tinker and experiment with knowledge, technologies, medical tools, other things, and other people. Patients who have been diagnosed with amyotrophic lateral sclerosis, a disease that causes a gradual death of voluntary muscles, such as those that are needed for eating, may start taking in food in specific ways. When medical professionals introduced feeding tubes, patients used the tube to ingest food that was rich in calories Jeannette Pols learnt by interviewing such patients in the Netherlands (Pols and Limburg 2015). At the same time, patient’s significant others kept mashing up dishes for them, especially their favourite ones. This allowed them to have nice tasting experiences. By coordinating, tinkering and experimenting, patients with chronic diseases together with others shape their daily lives in a good way.
Frau Schöbel, I recognised, had developed a technique to continue her visits to the casino, despite having had to sell her car and having lost sensations in her feet. She knew which day to pick - not Women’s day, but a day on which she felt well - and had figured out that in spaces that were accessible with a walking frame, machines existed that offered several games at once. Her daily life with chronic kidney disease included the pleasures of gambling, and dining out and, very soon, also those of cruising through a shopping mall.
A Wednesday in May 2018.
At the end of Frau Schöbel’s and my afternoon in October, with an eye on my pregnancy-related bulging belly, Frau Schöbel had stated, “You have to come and show me the Puzerl [sweety]!” “Of course!”, I had promised her. As I now walk up the stairs towards Frau Schöbel’s flat, my six months old son is sleeping at my chest in the baby carrier that I have put him in.
Frau Schöbel is already waiting at the door. As she sees the baby, she lights up.
I enter with my son. Frau Schöbel steers her wheelchair towards the kitchen. We follow her, fetch tea and coffee, and head towards the living room. The table is set and I take out two Punschkrapfen, pink sugar glazed rum sponge cakes which I had bought in the morning with Frau Schöbel’s comment in mind that she liked cakes with rum. I take a seat and my son begins to stir. Frau Schöbel watches. I unlock the baby carrier and turn him around. “Der Burli! Jo is der süaß!” [The boy! And how sweet he is!] “Hello my little treasure! Hello!” My son gazes at Frau Schöbel. “Look, he looks at me!” My son begins to smile. “And he smiles! Am I that ridiculous, sweetie?” We laugh. I put my son on a blanket on the floor and Frau Schöbel and I start with our cakes.
“The electric wheelchair arrived in December. I wasn’t allowed to use it first, because of the snow and ice. But now, I do!” Between the cellar storage and the corridor leading outside, however, Frau Schöbel had discovered, there was a step. She had hired handymen, who constructed a small ramp to smooth the ride. “I drive to the social centre now all on my own,” she explains to me and my son, “Sweetie, I can take you for a ride! But only straight ahead. I still don’t know how to take curves.” She chuckles. We continue with our cakes. While I ask more questions about the wheelchair, Frau Schöbel wants to know more about the delivery and my son’s character.
Half an hour later, my son begins to whine. “Would you want to show us your new wheelchair?”, I ask Frau Schöbel. “It would provide him entertainment.” “Then, we have to go to the cellar. Let’s head off for an outing, sweetie!” Frau Schöbel steers her wheelchair towards the door. I take my son and follow her. Like the previous time, she takes the first flight of stairs by gripping with her hands the railing to her right and putting one foot on the first step, the other foot next to it. At the top of the second flight of stairs, she tightly holds the railings to her right and left, puts one foot on the first step and the other foot on the second step. “Like an adult! I am so proud!”, she comments again. We arrive on the ground floor. Frau Schöbel continues down the corridor. She arrives at the door of the cellar storage space. I have followed her with my son in my arms. We are standing behind her. My son seems happy. She inserts the key into the lock, turns it around, opens the door, and reveals a bright red and black vehicle. “Here it is – the wheelchair!” “In the cellar,” Frau Schöbel comments. “Cellar…”, I hear her mutter while all of a sudden the rest of her body goes limp and sags to the cold floor. Her head bumps against a pipe. With my son in my arms, I cannot do anything but watch. “Au… Au…” Frau Schöbel groans. “My head… My butt… It hurts… Here… like when I had broken my pelvic bone.”
I put my son in the pushchair and call an ambulance. It arrives 45 minutes later and takes Frau Schöbel to the hospital where a radiography shows that her pelvic bone is broken.
By meeting Frau Schöbel, who shared with me how she lived her daily life, I learned how a patient in the end stage of renal disease in Vienna was suffering from reduced mobility, loss of beloved ones, and loneliness. I learned also how a patient on dialysis treatment developed techniques to continue gambling, fine dining, and enjoying her life. Most importantly of all, Frau Schöbel showed me how in living daily life with chronic kidney disease, pains and pleasures intertwined. Her reduced mobility created a dependence on a social worker, who pushes her to the daycare centre. But, at the same time, after having participated in Nordic Walking outings at the centre, it enabled her to take great pride in the ability to walk down stairs “like an adult!” again. The lack of social contact for entire days created loneliness, but a single visit of a baby provided extraordinary moments of joy and occasions for laughter. A new electric wheelchair permitted her to drive to the daycare centre all on her own, while when showing it to the baby and the researcher it occasioned a fall that broke her pelvic bone.
In living daily life with a chronic disease, pains and pleasures intertwine - in complex and unexpected ways.
A Tuesday in October 2018.
I am sitting behind my computer, sorting out field notes. In which year had patient O. been born? What exactly was the name of the disease patient that F. had been diagnosed with? I write an email to my main informant, the nephrologist heading the dialysis unit of the City hospital. “Bling.” Her response arrives immediately. “Dear Anna! … Frau S. sends her wishes. When she was in physical rehab after her pelvic bone fracture, she caught herself a Kurschatten.” It takes me a moment to understand the Viennese Kurschatten, “rehab shadow”, but when I do, I have to smile. Frau Schöbel came home from her rehab with a boyfriend!
Anna Mann works as a Postdoc researcher at the Department of Anthropology of the University of Copenhagen. Her work focuses on socio-materialities of pleasures in biomedical and food related practices, which she investigates through case studies set in Western Europe. Currently, she traces the crafting of “quality of life” in practices of living with and providing health care for chronic kidney disease patients in Austria. Previously, she was puzzled by moments in which something “tastes good”. On this topic, she published “Talking pleasures, writing dialects: Outlining research on schmecka” in Ethnos 84(5) in 2019. Through her work, she contributes to ongoing debates at the intersection of science and technology studies, sociology and anthropology.
References
Gordon, Lisa. 2001. “‘They don’t have to suffer for me’: Why dialysis patients refuse offers of living donor kidneys.” Medical Anthropology Quarterly 15 (2): 245-67.
Kierans, Ciara M. and N.I.U. Maynooth. 2001. “Sensory and narrative identity: the narration of illness process among chronic renal sufferers in Ireland.” Anthropology & Medicine 8 (2-3): 237-53.
Mol, Annemarie. 2008. The logic of care: Health and the problem of patient choice. London and New York, NY: Routledge.
Russ, Ann J., Shim, Janet K. and Sharon R. Kaufman. 2005. “‘Is there life on dialysis?’: Time and ageing in a clinically sustained existence.” Medical Anthropology 24 (4): 297-324.
Pols, Jeannette. 2014. “Knowing patients: Turning patient knowledge into science.” Science, Technology, & Human Values 39 (1): 73-97.
Pols, Jeannette and Sarah Limburg. 2015. “A matter of taste? Quality of life in day-to-day living with ALS and a feeding tube.” Culture, Medicine, Psychiatry 40: 361-382.
Note
[1]. I greatly thank Frau Schöbel and all my other informants for allowing me to join them in their daily goings-on. Frau Schöbel’s name is a pseudonym. For comments, questions and other intellectual input, I thank Ayo Wahlberg, Jieun Lee, and Clément Dréano. The research was conducted within the project “The Vitality of Disease – Quality of Life in the Making” (ERC-20140-STG-639275) funded by the European Research Council. Copyright for all pictures: Anna Mann.
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