Jan Grue knows that he is running out of time (which is what we are all doing, of course, though we don’t usually live with the knowledge). He is intimately aware that his body is frail and vulnerable (all our bodies are perishable things, sites of pain and bound for extinction, but his is more so). We live in our bodies in the world and in time. As Grue writes in his stunning memoir, there is “no I outside the embodied self” and no “me apart from the body”.
When we are young, we take this body for granted; we are blind to ourselves and time is not visible. Grue never had such unfettered childhood joy. He was always conscious of himself as someone who was different and therefore “defective”. At the age of three, a child living in Oslo with his parents and sister, he was diagnosed with spinal muscular atrophy, an incurable and progressive condition. The stash of documents he inherited shortly after he became a father himself describe in clinical language what this means in fact: he cannot walk more than a few paces, his feet are twisted, his body is weak, he uses a wheelchair, he will always need help, he often hurts and what is thoughtless for most of us (getting up from a chair, putting on clothes, making a meal, going into a shop) is a matter of planning and excruciating labour for him. How, then, to get through doors, up stairs, into planes; how to go to college, have relationships, fall in love, have a child, have a life that he wanted in a world that sets obstacles, often literally, in his path.
I Live a Life Like Yours is not an account of suffering and deprivation, nor is it a redemptive tale of survival against the odds. It is a restrained, dazzlingly intelligent and self-excavating examination of what it has meant to be disabled and visibly different, not “normal”. It beautifully describes “the work of being myself in the world” and this work becomes a meditation on what it is to be human, what it is to be lonely and full of hope and yearning. The memoir is not arranged chronologically, but proceeds by its search for “a different kind of language to the one I was offered”.
He turns to Borges, Foucault, Erving Goffman, the disabled poet Mark O’Brien, but carefully, never recycling them, more pondering their words before finding his own. The past, he writes, is a projection of memory and therefore always now; we are all “palimpsests”, manuscripts that are forever being written over. Every life contains alternative lives, ghosts of what might have been, in Grue’s case, the self that could run and leap and be unconstrained. Vivid memories are set into the book, some sad and a few that are radiant. I will never forget his description of skating in his wheelchair, skaters one by one attaching themselves to him like iron filings to a magnet, until a ribbon of people snake and flow in his wake.
From a very early age, Grue was never alone: he was always accompanied by an adult and therefore always looked at. He experienced this gaze – anxious, curious, speculative, medical – as an act of power over him. Through his childhood and teenage years, he was examined, measured, prodded, weighed, assessed, written up. Under the controlling institutional gaze and the penetrating medical gaze, he learned to despise his own body. He lived in a version of Jeremy Bentham’s panopticon, the imagined model of the perfect prison system where prisoners never know when they are being observed and therefore “behave as if they are always being observed”. The evaluating “clinical gaze” still awaits Grue in the mirror now, showing him a version of himself he has dreamed of slipping free from, like one of the superheroes he was obsessed with as a boy.
This gaze, he writes, brings stigma, which is a sign of a “spoiled identity” and a self that is damaged or tainted: “sick, broken, rotten”. You cannot escape stigma and its accompanying shame by any action, because it is not rooted in what one does but “who one is”. Yet Grue’s memoir, in its circling motion, finds a way through shame and “corporeal self-loathing” to something kinder, which is grief.
“Grief,” he writes, “is the recognition that something or someone is gone forever” and this “someone” can be a self or a version of a self. In therapy, he at last admitted: “I want the same thing as everyone else. But I’m not like everyone else.” He finally allowed himself to feel sad and this sadness for what he could not have and “the body that was not” will never go away. “I dream of another world,” he writes and the closest he has come to that world is within his little family, the one “into which I was born and the one I have received as a gift… the one I have created… It is a fiction, it is an empty space in the world. Breathe in.”
I started off by writing everything that most profoundly moved or excited me in I Live a Life Like Yours into my notebook, but quickly found I was almost copying out the book verbatim. Every sentence works hard for its place. It is smart, moving and original (and superbly translated). It clears a space for itself, brushing worn-out language and familiar ideas to the margins and forging its own “secret history” in order “to take back the world”. It makes you read carefully and think feelingly and I’m grateful that it is now in my head and heart, working change.
• I Live a Life Like Yours by Jan Grue (translated by BL Crook) is published by Pushkin Press (£14.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply