Wednesday, October 1, 2014

Review: Not Fade Away: A Memoir of Senses Lost and Found

Dear Literary Loves,
Oh my.  I just read a book that is similar in nature to my memoir about the big three in my life:  Meniere's disease, Uveitic glaucoma, and Cogan's Syndrome.  People have been asking me many questions while I've been reading Rebecca Alexander's book Not Fade Away:  A Memoir of Senses Lost and Found.  Did the book arrive? Did you start the book?  What do you think of her story compared to yours?  How is your book going to be different from hers?  What did you think of her narrative voice in the book?  Lord. Have. Mercy.  Okay folks, first the summary:

Rebecca Alexander's book Not Fade Away:  A Memoir of Senses Lost and Found is about how this young woman was diagnosed I think around age fourteen with Usher's Syndrome III.   Initially, she had noticed as had her parents that she was having trouble with visual acuity and general clumsiness along with a tendency to utilize her left ear for hearing.  Evidently, a specialist told her parents that she had Usher's Syndrome III which is basically a genetic disorder whereby a person slowly loses their sight and hearing, in both ears and both eyes.  Here's the kicker:  Her dad does not want to tell her about the disorder and her mom thinks they should tell her about the disorder.  They don't tell her.  Kids inherently know when something is wrong with them.  Trust me, I was trained and worked as a teacher.  The author is told explicitly what she has and the consequences of it when she reports to the health center on her college campus.  The doctor there just comes out and tells her in a frank manner.  I was stunned.  All parents have to make these decisions in some form or another.  I thought her mom was right and they should have told her about the disorder from the beginning.  Better to hear it from them than the way she did learn of it.  That's my opinion though. 

Eventually, her parents divorce, she's in a highly unusual accident (not giving it away), and she also begins to lose her hearing.  The accident forces her to learn to be resilient in the face of extreme physical and emotional challenge.  She goes to college, earns two master's degrees from Colombia, and is now a psychiatrist.  She discusses choosing to learn sign language, being introduced to walking with a cane, and also the entire process of becoming eligible for and obtaining a cochlear implant to increase her hearing ability.  It's an incredibly inspiring story and I felt for her when she was taking visual and auditory tests while also realizing you're losing your sight and hearing.  It's no fun being told you are continually going down in your test scores for sight and hearing.  People often take these two senses for granted.  I completely understood when she was trying to hear someone in a noisy restaurant and primarily having to rely on lip-reading or having someone else to relay to her what was said.  Being a person in the helping profession, the author will indicate to you time and time again that she realizes she had/has advantages most people facing this illness or something similar don't have.  And this is exactly where our stories diverge.

First, I don't come from a privileged family.  My dad's not an attorney.  I do have a rather unique sibling as most people know.  Intially, my Uveitis was diagnosed when I was sixteen and could not see the chalk board during my Geometry class. Neither my doctor nor my parents kept my illness from me.  In fact, I was by myself when my eye doctor first told me of my eye disease.  I developed Meniere's disease when I was eighteen and starting college.  Initially, I sought help from a local Ear, Nose, and Throat specialist and he referred me to a specialist at UNC-Chapel Hill.  No one there thought I could possibly have Meniere's disease because I didn't fit the textbook cases.  Guess what?  I have Meniere's disease.  When I turned thirty, I had my first cataract surgery because the drugs used to treat Uveitis cause cataracts.  Two years later, I was diagnosed with Uveitic glaucoma and I was sent to see a rheumatologist at Emory.  He diagnosed Cogan's Syndrome:  inflammation of the vessels, tissues, and nerves of the eyes and ears.  I began taking oral chemotherapy to keep my immune system from attacking my eyes and ears.  I've had four Baerveldt eye surgeries to implant a shunt into my right eye to keep fluid from building up and causing my vision loss to increase.  I am now participating in an experimental treatment for Meniere's disease with a specialist at Emory Hospital. 

Here's where our stories diverge:  I grew up in a middle working class socioeconomic family.  I didn't attend private school.  I am a product of our public school system and right proud of it.  I have one highly unusual and talented sibling.  We grew up attending a Methodist church.  I was not a social butterfly in high school; quite the contrary, I was a loner in high school.  I was utterly thrilled to get away from high school and move on to college.  My parents have been married for fifty years.  I have been married for seventeen years to a swell tech guru and love of my life.  Aside from my family, he is my rock and the only person beside myself I consult when making decisions regarding my health.  I have always felt that I could manage my medical conditions well alone with the assistance of some really fine doctors.  And I advocated for my needs right from the get-go; I didn't have someone in college to take notes for me or go with me to medical appointments.  The title bout between me and my medical conditions is primarily a daily grudge match featuring me versus Meniere's disease, Uveitic glaucoma, and Cogan's syndome.  I don't lean on anybody else.  My husband is my coach straddling the turnbuckle cheering for me, but I do these conditions alone.  That's just my nature and my way.  I haven't always received the best care or had insurance to help me with the costs.  No, my family isn't phenomenally blessed with monetary resources.  I don't expect the world to adapt to my medical conditions; I do my own adapting and I don't plan on sitting on the sidelines because I have serious medical conditions.  I am a forthright person; you always know what I think, mean, and where I stand.  I don't tend to lecture others on what's important in life.  Actions speak louder than words. 

What did I think of the book Not Fade Away?  I liked reading about someone else who is experiencing on a similar level what I myself experience.  There were times when I thought, "This girl knows exactly what I've been talking about for ages".   The author has paid her dues; she knows about that which she writes.  She and I just come from different backgrounds and approach our medical conditions differently.  For example, I could never have left a Braille instructor to fend for herself after coming to my home to teach me.  No way.  Won't happen.  My sibling would never get exasperated with me after repeating what was said at a table and then make a snarky comment.  That doesn't fly in the south.  People land on the floor, under a table, or worse if you pull that kind of stuff in the south.  And if there's one thing I don't do:  I do not live in denial.  I cannot and will not let myself take that route.  And I thrive on independence.  The only people I consistently rely on to help me with my medical conditions are my specialists.  It's up to me and them.  I do my own research, take my own notes, and explore what's new in treatment options.  For me, that's what has enabled me to survive and thrive.  Take no prisoners.  Bite it.  That's how I roll.

Do I recommend this book?  Of course.  Am I anxious for someone to publish my memoir?  Oh yeah, because I think the larger population and public can identify more with my background and my no-nonsense voice and style of writing. 
Till my next review,
Grace

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