Reviewed by Kate Champlin
The Music of My Life is the biography of an ordinary Ohio resident with Multiple Sclerosis by a son who was later diagnosed with MS himself. The biography charts a loving but sometimes fraught relationship that begins with Steve McClain’s childhood and ends with Betty McClain’s death in hospice. Over the course of the book, McClain gives readers a detailed look at life in Ohio in the 1970s and 1980s, the music industry, and the environmental and emotional challenges that those with physical disabilities faced then and continue to face today.
McClain’s first words throw us immediately into his mother’s perspective:
“Mountain. That was the word she used. I knew exactly what she was talking about, but I am not sure everyone else really got it. A small step. A throw rug. A street curb. The distance from the bed to the bathroom in the middle of the night.” (5)
Many readers will relate to these routine challenges. The landscape can look very different to those with mobility impairments, and the built environment often fails to take mobility impairments into account. In this sense, McClain’s memoir is a catalog of the accommodations that were not provided in past decades. The book is also a testament to the large gap that persists between the accommodations that are provided and the accommodations, cultural rethinking, and acceptance that are needed to make disabled people full members of the community.
Over the course of his memoir, McClain notes many property or city design factors that created limitations and thereby became challenges for his mother. Betty McClain could not enter areas in one of her own homes because of stairs or doors that she could not open. She experienced difficulty reading but could not find an alternative to printed books. She acquired hand controls and a wheelchair lift for her van but could not immediately use her van because someone forgot to add a door opener to the list of needed accommodations. McClain describes his mother as “basically trapped” first in her apartment and then in her bed (78).
Betty McClain later worried about her ability to physically access a phone in the nursing home where she eventually resided. It was her family who provided both a cellphone and a bag to keep the phone by her bedside. Unfortunately, such “casual” oversights continue to be common experiences in the disabled community today.
Far worse, Betty McClain died because a nurse punctured her bowel while attempting to change a catheter and because her nursing home providers refused to deal with the problem for four hours. Betty McClain used her cell phone to reach out to her sister when she realized that something was wrong. She also alerted the nursing home staff but was initially ignored. As a direct result, the wound turned septic before she reached a hospital. Such stories are, unfortunately, also all too common. Mainstream cultural values including ableism place many people with disabilities at the mercy of their caregivers. The “care” provided is often mixed with neglect, outright abuse, or as in this case, cover-up attempts that are privileged over access, dignity, and human lives.
Despite this final horror and the many human-made challenges that McClain catalogs, the memoir is ultimately a positive one. Steven and his mother loved each other fiercely and provided one another with lifelong support. McClain recounts one incident when he was offered a small part in a movie. He initially turned the part down because filming coincided with a planned visit to his mother. However, Betty McClain had an unexpected reaction when Steve mentioned the movie to her. As Steve McClain recounts:
She said, “Are you crazy?! Why would you not do it?!”
I said, “Because I am coming to see you.”
She said, “Do it!”
It reminded me of some of my early gigs when she used to tell me that “you never know who is in the audience.” I never forgot that.
I responded, “Really? You don’t care?”
She ordered, “No! You can’t pass this up! Are you crazy?!” (85)
Although the movie (a Gwyneth Paltrow film called Country Strong) never quite became famous, McClain never regretted his part in the movie, and he never forgot his mother’s support. The memoir recounts several moments when simple proximity or competing goals caused friction between McClain and his mother. These stories include the time McClain bought a house with his mother only to realize that he’d have to write and practice his music according to other people’s hours. The stories also refer to Betty McClain’s inability to understand that her son’s graduate school schedule limited his time for chores. His mother never attended college.
The memoir also recounts many positive moments, including shared dinners and birthday parties. McClain planned his mother’s sixtieth birthday party and describes the cake in detail in his memoir. He also celebrated his mother’s funeral the way she wanted it, with a cremation, beers, and a quiet interment. This book is a testament to the bond between McClain and his mother from the opening chapters to its final pages.
In the final pages, McClain also discusses both his own MS diagnosis and gives his reasons for writing. Thanks to his prior experience as an ally to someone with MS, McClain did not panic when he received his diagnosis––nor did he experience the identity dislocation that often comes with a new disability. Instead, he felt only calm acceptance and a need to share his experiences with others. As McClain puts it:
…the experience of my mother’s MS journey lessened my anxiety. I am well aware of the uncertainty and fear suffered by the newly diagnosed, but I had experienced MS my whole life as an observer and a caregiver…. I was not worried. I was actually a little relieved. (122)
McClain hopes that both caregivers and patients can learn from his family’s experiences. Readers certainly will learn from Betty McClain’s positive and negative experiences. They will remember both the numerous (often human-made) challenges that she faced and the strength with which she met those challenges. Readers will also enjoy the narrative as a biography, as a look at daily life in rural Ohio, and as a testament to the strength of the parent-child bond.
Title: The Music of My Life: Finding My Way After My Mother’s MS Diagnosis
Author: Steve McClain
Publisher: The University of Akron Press
Date: 2023
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About the Reviewer
Kate Champlin (she/her) is a late-deafened adult and a graduate of Ball State University (Indiana). She currently works as a writing tutor and as a contract worker for BK International Education Consultancy, a company whose aim is to normalize the success of underserved students.