Not Fade Away: A Book Reflection

I first saw Rebecca Alexander on the Today show back in 2009, and I was intrigued by this young, peppy athlete, who was my same age and also losing her eyesight.

The idea of going progressively blind has always sent a nervous chill down my spine, if I’m being honest, yet I’ve always taken comfort in the capabilities of my other 4 senses, thankful that they help compensate for my failing eyes.  So the idea of losing another sense, especially one as crucial as hearing, seems unimaginable to me.  Yet this is the story Rebecca unravels in her memoir, Not Fade Away.

Since I listened to this as an Audible book, I was at first distracted by the fact that the person reading her memoir has also narrated a couple other books I have listened to, causing me to think about those books.  But I soon got a feel for Rebecca’s underlying voice— sincere and vulnerable yet surprisingly matter-of-fact.

At some parts, I felt like I was reading about a modern-day, female Job from the Old Testament, as she seemed to be pummeled by tragedies-from her diagnosis to her parents’ divorce to a devastating accident to her boyfriend’s battle with cancer to her twin brother’s debilitating mental illness.  But at other times, I felt like I was just reading an e-mail or journal entry from a friend, reminiscing about summer camp and describing newfound relationships and career aspirations.

I was particularly touched by her depiction of the time she spent at her best friend Caroline’s home during the holidays.  She described how she had, in one day, broken two china dishes while trying to help in the kitchen and how she had fled the room after breaking the second one, crying in the bathroom like a child.  She went on to tell about Caroline’s mom’s reaction and how she put her face very close to Rebecca’s so that she was sure to hear what she said, “Becky, you must know that you are more precious to us than all the china in our cabinets.”   Rebecca went on to say that she stood still and nodded, not wanting Caroline’s mom to feel bad, “What I really wanted to do, though, was sob in her arms, to ask why it was always me needing help, why I couldn’t be the helper. It was all I had ever wanted to do. It made me so happy to help.”

I have broken many, many glasses and dishes over the years, sometimes at other people’s homes, and sometimes while trying to “help”.  As someone with a disability who often receives help from others, there’s really nothing you want more at times than to be able to lend a hand, especially in the kitchen during the holidays.  I related so much to her feeling like she was in the way and to not wanting to be a burden.  People have “excused” me (but it feels more like being “banned”) from helping to cook or clean, and it’s a demeaning feeling, so I loved how Caroline’s mother not only allowed Rebecca to help, but also assured her, very strongly, of her value.

At a later point, Caroline’s mom takes Rebecca aside and tells her how much Rebecca has helped Caroline to come out of her shell since they became friends, telling her to never underestimate the good she does.  Rebecca goes on to say, “Being acknowledged and appreciated, for all of us, is an essential part of living a life that we feel good about. Because we are reminded that we matter.”  Words that so many of us need to read.

I found myself feeling a bit envious of her childhood prior to her diagnosis and how much eyesight she had growing up.  The fact that she had enough vision to play sports and drive— two things I would have paid money to do as a teenager– made me long for better vision during my early years,  She is so humble and thankful, however, about the years she enjoyed before her diagnosis.  “There was a time before I was living with the constant reminder that I was going blind and deaf, and for that I feel incredibly grateful….There were years when my parents didn’t worry– didn’t fear for their daughter.  For me those were years of not being treated differently or feeling isolated, of having a chance to gain some sense of myself before this became who I was and who I would become. I feel so lucky that my disabilities didn’t define me as a child, and for what my eyes and ears have had a chance to experience.”

I was also in awe of how involved her family has been in researching her disease, especially her mother’s work with the Foundation Fighting Blindness.  Her friends and family continue to keep up on the research, allowing Rebecca to just live her life and not worry about keeping up on the latest studies.  I think that’s one of the reasons Rebecca doesn’t get bogged down by Usher’s.  She has people to take on at least one aspect of a very time-consuming disease.  She can focus on adapting to her losses, moving forward in her career and athletic goals, while the special people in her life research the rest.

After finishing her memoir, I re-watched the original Today show clip, along with several new ones that aired in September to promote her book).  I have to say, that she looked very different in just the 5 years since the first interview.  In a way, the progression of Usher’s was very evident to me.  I’m not sure if it’s due to the cochlear implant, but the way her lips moved, enunciating each word very visibly, her face completely animated, reminded me of other deaf people I have seen signing on tv.  Yet she looked more confident and self-assured than ever.  She somehow transformed from this girlish young person who didn’t seem quite comfortable with her disabilities to a wise, mature woman very much at home in her own skin.

In the end, I was left with a sense that Rebecca Alexander will be just fine, no matter what outward circumstances occur in her life.  She is a fighter, a true survivor, and a woman with an unstoppable zeal for life.  It is no coincidence that as a Psychotherapist, she sees her role as helping her patients take steps forward.  It’s what she has clearly done in her own life.  I’ve always heard that therapists can only take their patients as far as they themselves have gone, so I can see why she has such a successful practice.  As her vision and hearing have deteriorated, she has continued to move forward at a pace that is slightly intimidating, though completely inspiring to me.