This archive report was first published on 15 August 2021.
On August 15, 2021, Michael J. Fox reviewed Jan Grue's memoir, 'I Live a Life Like Yours,' a deeply personal and insightful account of living with a rare form of spinal muscular atrophy.
Grue, a linguistics professor at the University of Oslo, was diagnosed as a child with a devastating prognosis, but he defied expectations and discovered that his condition was not progressive. He writes matter-of-factly about the vagaries of fate and the struggles he faces in reconciling his physical reality with the world's expectations.
Grue's parents, both academics, raised him to be self-sufficient, but he soon found himself battling the Norwegian government's bureaucracy. He recalls the 'hundred tiny demands' Social Services posed, asking him to describe his needs in a way that would fit their narrow expectations.
Grue's narrative shifts through various ideas and themes, including his childhood, career in academia, relationship with his wife, Ida, and travels. He shares his experiences of being treated like 'luggage' when traveling in an airport wheelchair, and the humiliation that comes with it.
Grue's memoir is a story of intense difficulty, but it's also a testament to the human spirit's capacity for resilience and determination. He refuses to be cloaked in a 'tragic aura' and insists that his physical malformity is not the totality of his experience.
