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Years ago, I read “Not Fade Away” by Rebecca Alexander, who most recently has (among many other things) been part of the Foundation Fighting Blindness’ controversial “How Eye See It” campaign. I found her book compulsively readable, in a chatty, conversational style, even as I grew frustrated with her desire or need to hide her deafness or blindness or, alternatively, push herself SO hard. Without taking away from her own lived experiences (of which she is incredibly self-aware), I wish (and maybe she does in hindsight) that she’d made life easier on herself by reaching a place of acceptance earlier.

Last year, I introduced you to Tracy in my post written by deaf-blind women. She shares my overall impressions of the book, as well as some of Rebecca’s own lived experiences. She graciously allowed me to share her own review of “Not Fade Away.” Take it away, Tracy!

 

Tracy’s Review

“Not Fade Away” – about a woman slowly losing her hearing and vision – may read as inspirational to most people, but for me as a deafblind woman it just irritated me.
We have shared experiences in deafblindness (in her later years after she finally accepted it). We both have trouble hearing and seeing in dark, noisy places; we were reluctant to start using a white cane; we both have a cochlear implant; and we both have similar reactions from the public such as asking if we need a wheelchair. We both are uncomfortable about being called someone’s “inspiration” just for dealing with our everyday lives. I also connected with the author in her coping skills as a child. We both believed we weren’t good enough for our parents, escaped a lot into imaginary worlds in our heads, and made up stories to try and get other kids to like us.
The book is described as “a memoir of senses lost and found”, yet it reads like a diary in mixed chronological order of memories of her parents’ divorce, her brother’s mental illness, her eating disorder, her fight with self-image and such. Much of the reference to her Usher’s Syndrome was dedicated to how much she hated and all the attempts to deny it even when it was obvious to those around her.
I get that she doesn’t want her deafblindness to be at the forefront of everything, but denying that she has it is like denying she has a nose on her face – almost everyone can see that she does. She could save a lot of frustration by being upfront about it.
Maybe it’s my background of already been born deafblind and not having to go through the transitional period of losing senses that made for my jaded view of this book. Maybe it’s my nonchalant attitude on life. I’m not afraid of letting people know about my deafblindness and what I need for accommodations. This is who I am, it’s a part of me and if you don’t like it, fine, go about your own life, your loss not mine.
Even though the author never displayed a “victim mentality” that some people develop after a disability diagnosis, she went the opposite way of being an over-achiever so that when people find out she’s losing her hearing and sight that they’ll like her anyway.
I just wanted to shake her and scream “there’s nothing wrong with being deafblind! You are still going to be you and you can still do everything and you have done a lot more than most able-bodied people! So just ACCEPT it! Who gives a crap what others think or how they view you!”
She states in a chapter in the middle of the book “I have a true understanding of what it means to take each day as it comes, with its joys and sorrows and complications, and to make the most of it.” This irritated me because I felt that she never truly did learn this, as later chapters still show her denying and excusing her losing vision and hearing. She also said in a chapter near the end, “I was only going to make life harder on myself by not accepting help.” It would have made her life a lot easier if she’d accepted this 50 chapters ago.
We all know getting a “terminal” diagnosis is dreadful and life-changing. Everyone would go through the different stages of grief of denial, anger, bargaining, depression and acceptance. I just felt that the author spent about 3/4th of the book in denial.
This book just did nothing but aggravate me and left me confused – why couldn’t she just get around to accepting it?

 

Tracy and I both give this book a 3/5-star rating.

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