Reviewed by Andrea Marks-Joseph
A refreshing coming-of-age memoir exploring young love, college, and careers while navigating a progressing disability
My Unexpected Life follows Jennifer Gasner’s journey from first noticing her symptoms to getting diagnosed and from college to the ups and downs of starting a career with Friedreich’s ataxia, a form of muscular dystrophy that manifests as “an impairment affecting [her] motor skills.”
The illness progresses throughout the years—and so Jen’s perspective on her diagnosis must, too. Gasner introduces this truly engaging and enlightening work as an act of “reliving the parts of my young life that defined me.”
The most notable part of this memoir for me, as a disabled reader—because I’ve never before seen it reflected with such poignant clarity and truthful, all-encompassing nuance before—is Jen’s relationship with her parents.
Everything from the way they sometimes go silent in doctor’s offices to the times they’d avoid discussing her illness altogether, making her feel ashamed to bring up her struggles. The embarrassment telegraphed from her mother holds her back from admitting when she needs help with incontinence, even while in the same breath her mom provides assistance in significant, unforgettable ways. I can’t say strongly enough how accurately and compassionately Gasner wrote that difficult and draining experience. “I decided not to express how deeply they had cut me,” she writes, matching my own internal dialogue at many points of my young disabled life. “It was evident that the quality of my life was up to me. They would never comprehend this new identity of mine.”
I also love that this book is less of a story of an illness and more about who Jen is as a person. We meet her as someone determined to move out of her conservative small town, someone who loves music and wants to have a career in the industry, and wants the kind of romance she grew up picturing.
My Unexpected Life is a valuable resource for disabled and non-disabled alike, but its value lies in how rich and brimming with personality it is. The narrative follows a young woman figuring herself out with the complication of desire and disappointment that we can all relate to. Jen is surprised by the options available when she’s custom measured for her wheelchair and wheelchair-accessible van, and she’s equally surprised when she finds herself backstage at concerts of the bands she loves, spontaneously entering the Ms. Wheelchair America beauty pageant and kissing hot guys she meets on campus.
Through the years that we accompany Gasner, she progresses from someone who believed “Didn’t agreeing to a wheelchair mean I was giving up my life?” to someone who describes life with her wheelchair as “awesome,” telling us that “using the wheelchair didn’t make me feel demoralized or useless. It made me feel confident.”
The first time she ventures outdoors on her own with her wheelchair, it’s almost comical how miserable the bus driver is to see her. He sighs, instructing a clueless Jen to move back while he opens the ramp for her to embark. It’s enraging to read the indignity and injustice of traveling while disabled—on planes and buses especially, but even going to a mall where a group of strangers decide they must pray for Jen while she’s literally just trying to shop and eat Cinnabon.
I’d highly recommend this book for anyone disabled, no matter how long ago they were diagnosed or how progressive their illness may be. There’s a universal language of external misunderstanding and fierce internal motivation in the disabled experience that Gasner taps into here.
She also brilliantly conveys the incorrect notion that once you’re diagnosed with an illness you understand everything that’s happening to you and all the tools you’ll need to cope. The story introduces Jen and her readers to medication available for her bladder control struggles, the various options for walking support, and the accessible areas at live concert venues—only when she reaches a point of admitting that she needs them. Even then, the logistics of finding the exit and entrance and elevator access when going to a new building can feel like an insurmountable obstacle that strangers don’t want to help her across.
My Unexpected Life is a fantastic indication of what accessibility should look like and how overlooking your disabled colleagues, students, and peers’ needs hurts them. At the same time, it shows how creating a genuinely accessible environment uplifts and welcomes talent like Jen into your life, workplace, and community.
This book is powerful for people of all ages but particularly younger disabled readers, who will learn from someone who lived it that you can have a group of friends and coworkers who know about your disabilities and help you when needed. And those same people can be friends with whom you can have regular hilarious sexy fun with like everyone else.
By the end of the book, Jen identifies as “a badass disabled woman.” There is so much peace and hope in her saying that “My newly diagnosed seventeen-year-old self never would have predicted this much success and joy.”
The focus on romance, sex, and attraction is so important to this story, too, because it brings Gasner’s disability into focus in the context of exactly who she is at the time: A teenage girl, struggling with the primary concern that: “What if no one was attracted to me after I started using a wheelchair?”
My Unexpected Life follows Gasner as she adapts her career goals to her developing symptoms, experiences the difficulties of “looking disabled” but needing accommodations, and feels the complications of being visibly different but wanting to be seen as equally capable. This is a story about how your world can get bigger and brighter when you’re diagnosed with a disability. It’s an honest portrayal of the difficulties along the way to following your passions while staying encouraging in tone and story.
Here, Gasner fights against the “demoralizing image” of disabled people that shaped her worldview without her even comprehending the damaging depths of its impact. “I realized that many of my feelings about disability had been ingrained in me without my understanding of how or why,” she admits. “I had been fighting being disabled for so long, just for that reason—I thought I’d be “less than” if my body’s ability deteriorated.”
There’s a refreshing amount of humor from all angles of Jen’s story that connects with my experience of a progressing disability. (When applying for jobs, despite her loaded resume, Gasner struggles to find a job, her mobility device registering as a red flag when she arrives at interviews: “My body had become a warning light of my supposed inadequacy.”) But Gasner explores the experience of isolation, frustration and desperation that we can all relate to, alongside the absolute radiant joy when you get the accessibility accommodations that widen your world in the exact way you need.
Content warnings are necessary for the author’s description of a painful, difficult spinal tap as a child, and the occasional reference to doctors who are uneducated on how to appropriately care for a disabled patient. There’s discussion around a disabled person’s “heightened risk of being taken advantage of daily” when they have a carer, as well as describing the signs of sexual harassment and abuse that Jen witnessed in women while working in the music industry. There is one instance of someone using a slur against Gasner, presented as the wildly offensive, inappropriate behavior that it is.
My Unexpected Life is about the liberating and affirming power of mobility devices, and the life-saving soul-uplifting work of healthcare providers and those who offer tools to enrich disabled lives. It’s also a story that honors the power of Jen’s friendships.
I’d highly recommend this book with equal passion to disabled people to read themselves in the context of college and family, as I would recommend it to their friends, family and colleagues. This book will make excellent reading for anyone able-bodied because it inspires compassion and awareness of the actual concerns we disabled people have—not the imagined shame and guilt often put upon us.
By sharing her story so openly and generously, Jen Gasner gives us insight into how to offer nonjudgmental kindness to those around us and reminds us to educate ourselves on being better humans.
Thank you for reading Andrea Marks-Joseph’s book review of My Unexpected Life by Jennifer Gasner! If you liked what you read, please spend some more time with us at the links below.