The care of others

My Mirror column:

Two recent documentaries – Everywhere We Are from Germany and About Love from India – provide thoughtful multiple perspectives on dealing with the illness of a loved one.

Midway through the 2017 German documentary Everywhere We Are, there occurs a totally ordinary conversation between a pair of siblings. “Have you finished eating or do you still want a little bit?” the sister asks. “Still a little bit,” the brother responds. “OK,” she says. Then: “Should I put something behind your neck?” “Come on!” he says, sounding exasperated. The camera moves from her hesitant, concerned face to his almost immobile one. He is sitting up in bed, a small towel covering his bald head. We see the sister's face again as she quickly backs up: “Sorry, it’s too much again.” Sorry, she mutters almost to herself as she pets the family dog, sorry. But as her brother keeps sitting there with a half-eaten meal in front of him, she asks if he is tired, and whether she should take his plate. There is no response. “Yes, no, or maybe?” she persists. “No!” he yells, with a gesture of irritation. “OK,” she says finally. “I’ll leave you alone then.”

In Veronika Kaserer’s quietly observational film, the ordinariness of this scene is bookended by discussions of illness and impending death that are far from ordinary – just before this, for instance, we have seen the sister (Sonja) ask the brother (Heiko) whether there’s anything specific he wants said at his funeral. Dance instructor Heiko Lekutat, 29, has a particularly persistent cancer that forced him to amputate a leg early on, and now threatens to kill him any day. Sonja, his only sister, and their parents Jurgen and Karin, have brought him back from the hospital, “home to die”.

Heiko has fought his disease with fortitude for years: getting an artificial leg, continuing with his dance project. Even at this last stage, he and everyone around him try to keep their spirits up. There are conversations about his good appetite, laughter with visiting friends, and gently wry humour: in one domestic moment, as Heiko is wheeled past the dinner table, he stops at his father’s place and samples a bit from his plate, calling it “a quick stopover”.

Kaserer’s film, which was awarded the Compass-Perspektive-Award 2018 for best film at last year’s Berlinale, runs the risk of being seen as intrusive or exploitative because it focuses on the most painful aspect of life – death. There are not too many close-ups and the film contains more thoughtful conversations than teary ones: this is, after all, a middle class German milieu. But by cutting back and forth between the last days of Heiko’s life and the time soon after his death, Kaserer offers an intimate sense of what it’s like to deal with the loss of a loved one.

There is much to be learnt from the very different ways in which different people respond. The father, Jurgen, who is closest to Heiko, is mostly intent on keeping hope alive and helping Heiko fight: the only time he breaks down on camera is when talking about how apart from the unfairness of such a young person having to die, what he feels “is simply egoistic – that I will miss him so much”. The mother, Karin, is also deeply sad, but her way of strengthening her son involves trying to prepare him for the hereafter. She wants to tell him of her own near-death experience, when she was briefly in a coma. Sonja, the sister, gets her arm tattooed in Heiko’s handwriting, commemorating their siblinghood, and grapples constantly with wanting to help her brother at every turn – while coming up against the fact that illness does not prevent him from wanting his own space. “It is not a good sign if he lets me touch him.”

Heiko is prickly, but he’s far from being a rude patient, at least on camera. But anyone who’s ever taken care of a family member knows that familiarity, certainly in this context, breeds a great deal of contempt. Another recent personal documentary, Archana Phadke’s wonderful About Love, which won the New Talent award at the Sheffield Doc festival in June 2019 before playing at festivals from Mumbai to Dharamshala to Goyang, South Korea, takes us deep into the dynamics of Phadke’s own family. Her crabby octogenarian grandfather is a great “character”, especially on film. But even as you laugh out loud at his unconcerned swearing and almost comic berating of his wife, you remain powerfully aware of what it takes for Phadke’s almost equally aged grandmother to take care of him. Year upon year, feeding and bathing and helping him sleep, the intimate caregiver who enforces the discipline he needs to carry on living receives only abuse in return.

Closeness to someone who is suffering is a strange thing, producing unexpected forms of intimacy and sometimes necessary forms of distance. Phadke’s grandmother has resigned herself to her duties in a marital domestic milieu from which escape is not even imaginable. Sonja’s desire for greater closeness to her dying brother is experienced by him as excessive, making her insecure. Self-preservation is needed in both these cases.

Meanwhile a close friend of Heiko’s says he feels his energies dip when Heiko’s do, and rise when Heiko is feeling better. A possibly Buddhist mentor tells him that though he should not burden Heiko with his own experience, this level of empathy with someone can be seen as a gift. It may not be, he adds, “a gift from a secular perspective”. No modern rational belief system embraces the idea of experiencing pain willingly, not even the imagined pain of another’s body. And yet, how can we ever successfully care for anyone if we don’t at least try to imagine ourselves in their place?

Published in Mumbai Mirror, 19 Jan 2020.