Note: Sometime I write about things other than geography and environment. The piece below originally appeared last week at TheCaregiverSpace.org, under the title “A reading of Kafka’s Metamorphosis from the point of view of a caregiver for a person with severe chronic disease“.
What if the insect pest carapace in which Gregor Samsa finds himself one morning were read as a metaphor for debilitating chronic disease? Years ago, the first time I read Franz Kafka’s Metamorphosis, all I retained was the shock value of the weird story of a young man discovering himself as a giant bug, crawling the walls, disgusting the family. Four decades later, as father of a young man bedbound with very severe ME (myalgic encephalomyelitis), I read it again. The story knocked the floor out from under me. Not just for the uncanny parallels between my son and Gregor’s situation, but for the transformation in his family that ultimately leads them to abandon him and rediscover joy, normality, and a future. I shudder at the idea of abandoning my son. It is an utter impossibility. And yet… that dream of a future, an escape hatch, allowed me to at least think around the unthinkable, to acknowledge those emotions.
Kafka’s short novel has been analysed in so many ways – as critique of societal and bureaucratic expectations, as therapy for his difficult family relations, as a stance on moral degeneration, as explorations of alienation. A reading through the lens of illness and care is also possible – the confinement to a room, the disbelief from outside, and the slow withdrawal of tenderness under the grinding duration of disease. Metamorphosis came out in 1915, two years before Kafka fell seriously ill with tuberculosis. But younger Kafka was already worried about the inadequacies of his body, struggling with headaches, insomnia, and exhaustion.1 These symptoms are common to many chronic diseases, like ME (also known as ME/CFS), like Long Covid, like Ehlers-Danlos. A reading of Kafka through such diseases, which are unusually isolating, confining people to their rooms, appears not to have been done before.
The parallels go deep. Gregor Samsa was an active, high-achieving young man. Yet, one day, he wakes up different, no longer recognizes his limbs. He is incapable of moving normally; he is hungry yet repulsed by normal food. He is confined to his room, hides in the dark under his bed. He loses his lucrative job and his contacts with society. It is uncanny how this description matches that of my son – who after a slow post-covid decline, one summer day three years ago was no longer able to get up, tolerate light, and constrained to abandon plans to return to university. He is confined to his room, struggles with food intolerances, nausea, and insomnia.
The reactions of the Samsa family in Kafka’s novel resonate just as much. At first the family doesn’t understand, doesn’t know how to deal with Gregor-as-insect (we also did not understand sickness that did not get better, that did not have treatments, that contradicted all we ‘knew’ about healing). Gregor’s sister Grete rises to the occasion, becoming a model carer, bringing food, observing, learning, helping (as we tried to do). The Samsa family needs to adjust economically: the sister, father, and mother all start tiring jobs to bring in income; they rent out a room to boarders (in online support groups I have met several people who were forced to do the same – including a septuagenarian starting a four-day a week job to pay the health costs of his now 31-year-old son; others who moved homes). Grete and her mother remove furniture in an attempt to better meet the needs of insect-Gregor (we lowered a new big bed to our son’s room from the upstairs balcony, re-arranged shelves, installed a ceiling fan, removed excess stuff…). The father has a moment of repulsion and frustration and bombards the insect with apples (I have – out of frustration – banged water bottles onto the bed, grumbled aloud, stomped loudly up the stairs, despite explicit pleas from my son to be quiet). The Samsa family struggles with social shame and seeks to hide their insect son from the boarders and neighbours (is that why we stopped sending our annual family holiday email letter, unsure how to tell a story with this kind of a narrative?). But the family keeps the door to his room open, so Gregor can listen in on their dinner table conversations (we keep our son in family WhatsApp exchanges, a sometimes-lively banter).
And then the family’s relation with Gregor evolves. This is the part that gets scary, as it outlines patterns that we do not want to happen, but could happen. The family is constrained by their own lives, their economic necessities, their tiring jobs, their own fatigue and emotional exhaustion, as well as by Gregor’s physical condition, not to love Gregor less, but to care less for the insect that Gregor has become, to ignore him. Meals become less frequent, less thoughtful. Spare furniture gets piled up in Gregor’s room. The rotting apple in Gregor’s carapace is not removed, the wound not treated. And in the end, sister Grete suggests that the emaciated insect – “it”, not “he” – is no longer Gregor and must go, opening the way to his starving himself to death. In the end the family is liberated, takes an excursion to the sunny countryside, planning to move apartments and dreaming of the future of their daughter.
Ouuff. Deep breath. I read the final parts of Metamorphosis with disgust and with guilty envy. I pushed away such thoughts of escape because never would I actually want this, and even less to act on it. It would simply be wrong, a dereliction of my responsibility to my child. But there it is, an escape, in black ink on the white page, voicing the unvoiceable, arousing terrifying feelings. Feelings that family carers of the homebound, bedbound, severely chronically ill would all recognize, need to acknowledge, and find their peace with. Feelings that we need help with and support for – so that we don’t ourselves someday wake up to find ourselves transformed into some kind of monstrous vermin.
Coda
I write this from a carer’s perspective. Kafka’s story is equally troubling from the point of view of the person suffering a debilitating chronic disease. In the final sections of the story, Gregor, reflecting on his life and the burden on his family, decides to stop eating. Many chronically ill people struggle with guilt for the sacrifices of those caring for them. Suicide is common in ME. Like the escape dreams of family carers, those thoughts are better addressed, acknowledged, and encountered rather than being hidden or ignored. In the hopes of preserving lives as we wait for a cure.
In my life as a carer, I am thankful for the support of colleagues, friends, and family. For nearby mountains, lakes, forests, and gardens to escape to, even just briefly. Swiss government disability support provides a little revenue to my son and pays for a few hours of home-help a month. Diverse programs for ‘les proches aidants’ (a great expression in French that includes not just family carers but possibly also dedicated friends and neighbours) here in the canton of Vaud give free psychological consultations2, support groups and information3, and even student volunteers to relieve the pressure.4 But there could always be more.
Notes
Thank you to my other son, who had to digest Kafka for a school exam, auf Deutsch. Otherwise, I would not have rediscovered it. Thank you to Caregiver Space for hosting and publishing this essay. For specific support with ME/CFS and similar illnesses I also recommend the site Caregiver Wisdom.
