“You look so good.”
This statement may typically be thought of as a compliment, but in Jan Grue’s case, it’s an expression of surprise often delivered by people who haven’t seen him in a long time. They aren’t stunned that his clothes or hair are perfectly in place, but that his health hasn’t dramatically declined. “What lies beneath,” he writes, is the “surprise that I am still alive.”
Grue was diagnosed with spinal muscular atrophy (SMA) when he was 3. His memoir, “I Live a Life Like Yours,” profiles his life growing up in Norway, his experiences with SMA, his academic journey, and his life as a husband and father. Originally published in 2018, the book received critical acclaim. It has since been translated into English with the U.S. version released this past August.
Grue describes his childhood and teenage years through snapshots of his life experiences, interspersing them with stories of his travels, his marriage, and his life as a professor. Through these vignettes, the reader gets a taste of Grue’s life with SMA as he navigates experiences such as relying on a manual wheelchair during a group trip to the beach and dating online while wanting to explain his limitations and abilities.
The book echoes many of the sentiments that members of mySMAteam express. “SMA and my wheelchair don’t define the person I am,” one member said. “I try to live life to the fullest and stay positive.”
Grue embraces the opportunity to live life to the fullest, sharing the experiences that opened the world to him more widely. As a teen, he would immerse himself in movies, comparing his life to those on screen. After hitting adulthood, Grue acquired a power wheelchair, which gave him the freedom to study and travel across the world, ultimately leading to his current position as a professor of qualitative methods at the University of Oslo in Norway.
“I have surpassed expectations,” he writes. “I’ve come out on top, allied with nothing other than my own body, which has lived its life, on its own premises.” Grue shares his memories and experiences as a way to convey the similarities of his life to those in the general population, even as he has faced challenges that many people could never imagine. Quoting a line from Han Solo in “Star Wars,” he writes, “Never tell me the odds.”
“I Live a Life Like Yours” is available in bookstores now.
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