Not Fade Away

Everyone faces hardships. Most of us are unaware of what the future holds, but what if you knew about the struggles awaiting you like writer Rebecca Alexander?

Memoirs tackle struggle. When I read one, I want honest accounts from a unique perspective about a conflict or I toss it back into the vast, churning sea of available personal narratives. In her memoir Not Fade Away, Rebecca Alexander, a practicing psychotherapist, recounts her life with Usher syndrome, a genetic disease that eventually robs individuals of both vision and hearing. (The book caught my attention when Nicole Kear, a writer whose book I enjoyed, recommended it.)

Alexander tells us she grew up in a busy, loud household where clumsiness blended in. Trouble at dance class or bumping into things was passed off in the, “blissful years of ignorance.” At 12, she is informed of her degenerating vision issue, but she chooses not to fully examine what the information meant. Desperate for approval at times the teenager engages in lying, loving the attention and arguing with those who called her out. At 19, her diagnosis of Usher syndrome happens. She writes later, “The lengths to which we will go to not hear what we do not want to know are astounding.”

Alexander remains grateful for the years she wasn’t defined by her disability. As someone who gradually gained low vision, I sympathize with the private spaces of vision loss. I relate to situations of visual impairment awkwardness like when, “people now appear in front of me as if out of nowhere…It’s like a startling and unpleasant magic trick, one that I never get used to.” Also, I understand the stress of small talk with strangers or friends when they’re distracted as she explains, “for me, a conversation requires effort and total concentration, and it’s amazing, once you notice it, how hard it is for most people to give someone else their full attention.” Been there, sister.

She meets physical, mental, and emotional challenges as she faces her disabilities. She details her childhood, family, friendships, dating life and work plus dealing with vision and hearing loss, a complex adult life. As the book progresses, she displays her attitude of living with a disability without shame, a sign of acceptance:

“I’m so used to not seeing or mishearing people that I’m almost beyond embarrassment. When something like that happens, I have to laugh. What’s the alternative? The doctors who diagnosed me thought I’d be blind by the time I was thirty. I’m thirty-four now, and every day that I wake up and can still see is a gift. Every day, the cartoon hole closes in on me, and I push back against it with all my might.”

Alexander structured her book in 58 chapters, vignettes more than essays, snapshots in her life capped off with concluding thoughts, a searching question to consider before the next chapter. Her chronology jumps around, but it offers memories filled with emotion and sensation before moving on, reminding me of mobility with a vision impairment: moving then disjoint then connection then moving again. The clear writing kept a quiet, almost formal voice until the last third of the book as if Alexander threw off a blanket of convention. She talked directly to the reader rather than through the lens of careful remembrances. I wish there was more of this voice throughout her memoir. With casual and pointed narration, her sense of humor arrived on the page.

Alexander’s honesty plus a keen awareness of her future health issues ultimately allows her to shape her resilient spirit. Her earnest insights stayed with me after I finished the book:

“If we knew everything that we’d eventually have to face in life, it would paralyze most of us. I have to prepare myself, as much as I can, for the inevitable. Because if I spent all of my time focusing on that future place devoid of light and sound, I would have missed, would be missing, so much in the present.”

I recommend the courageous memoir Not Fade Away for readers interested in coping with vision loss and readers unfamiliar with the reality of living a full life with a disability.

Have you read Not Fade Away? Do you read memoirs? Tell me your thoughts.

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