Mercies in Disguise by Gina Kolata - Book Review

 

I simply can not imagine being in the shoes of Amanda Baxley. I can't imagine that my grandfather, uncle, and father have died from a degenerative brain disease. I can't imagine that I being faced with the decision of whether to find out if I have the same disease. And I can't imagine the myriad of ways in which life would be different if I found out that the genetic test was positive, or negative. "Mercies in Disguise" follows the story of the Amanda Baxley, and the Baxley family as a whole, as they deal with the emotional and physical blow of this terrible disease. The book also delves into the background, research, and discovery of several degenerative brain diseases.
Keep reading to see my thoughts on "Mercies in Disguise"...




Mercies in Disguise
by Gina Kolata

In Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution―not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma―fertility specialists had created a way to spare the children through an expensive process.
A work of narrative nonfiction, Mercies in Disguise is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman―Amanda Baxley―who faced the future head on, determined to find a way to disrupt her family’s destiny.

Non fiction with great storytelling

While I really enjoy reading non fiction, I am definitely more particular when choosing a book from this genre. This is likely because I most enjoy a fictional narrative, and I've found that in many non fiction books I've read, the "characters" were very difficult to connect with and the "story" too dense to follow. My favorite non fiction books, however, are written by authors who walk the line between fact and storytelling, using one to enhance the other. Gina Kolata did an excellent job of this when writing "Mercies in Disguise.  I felt invested in and connected with the Baxley family as they tried to determine what illness was afflicting their family and what recourse they had for treatment. My heart broke and leapt for joy at Amanda Baxley and her struggles and success in life with the threat of a genetic disease looming overhead. I was equally impressed by the author's ability to make potentially less relateable characters come to life. In addition to the Baxley family, "Mercies in Disguise" also follows the research and discovery of degenerative brain diseases since its early roots in a New Guinea field hospital in the 1950s. These parallel storylines as generations of Baxleys and scientists separately piece together the symptoms of these diseases and make connections, further added to the storytelling aspects of this book, and my enjoyment of it.

Just enough science, but not too much

I was a biology major for one arduous year. When the math of science out paced my reading comprehension skills however, I was out of there - a decision I sometimes, but rarely, regret. I love science, but I love literature more, and overall I am glad I switched to English Literature my sophomore year- and I have a feeling so are the chemistry tutors at my alma mater! "Mercies in Disguise" had just the right amount of science for me to enjoy the story without feeling like I was reading a textbook. I do think a background in science aided my enjoyment of this book, but I don't think it is necessary. If you've watched a couple of episodes of Grey's Anatomy- you'll be up to the task. The science behind the range of degenerative brain diseases discussed in "Mercies in Disguise" is fascinating and I enjoyed seeing the accumulation of knowledge, and the impact, privilege, and burden that can be for families today. "Mercies in Disguise" showed me the heartbreak families experienced for generations when afflicted by these, then mysterious, diseases- but also the burden families now face, knowing the disease and having all of the information, but being faced with decisions previously thought impossible in genetic testing. I really enjoyed reading Amanda, and her siblings, divergent points of view regarding the tests and how the knowledge of the disease affected their lives.


Things I Struggled With

Nothing! I don't really have any bones to pick with "Mercies in Disguise". Overall I really enjoyed this book and would definitely recommend it to others readers who enjoy nonfiction, are curious about degenerative brain disorders, genetic testing, and medical ethics.

Have you read 'Mercies in Disguise"? Please let me know what you thought of the book below- I'd love to chat with you about it! Thinking about reading this book? Click here to find a copy at your local library or click below to view the book on Amazon.com!

Many thanks to St. Martin's Press for allowing me to read this book prior to publication. As a "girl about library", where books are always free, you can be sure that all opinions expressed are my own. Happy reading!