The Woman Who Walked Into the Sea: Huntington’s and the Making of a Genetic Disease
By Alice Wexler
I’m at the time of my life where I read books that I think that I’ll enjoy versus the time in college where I had to read books there is no earthly way I’d even consider casting my eyes over. Armed with fantastic reviews fueling great anticipation, I dove into Alice Wexler’s The Woman Who Walked Into the Sea. While I found it a decent read and a book I felt compelled to finish reading, my impression once I’d finished reading it was, “Meh.”
And that surprised me. I mean, when it comes to Huntington ’s disease, the Wexler family is first and foremost. The Hereditary Disease Foundation was started by Alice’s father Dr. Milton Wexler after he discovered that his wife, Alice’s mother, had inherited and subsequently died from the disease. Alice’s sister Nancy is best known for her discovery of the location of the Huntington’s gene. When it comes to any discourse on Huntington’s Disease, the Wexlers are usually central to any discussion.
Back to the book. After my reaction to this book bubbled to the surface, I decided I should examine why I felt this way. I guess it comes from the fact that the book was touted in the medical history community as the book on Huntington’s Disease (or Huntington’s Chorea, which is the term I grew up with). This book is a history of the disease but not necessarily with a purely medical history angle. After all, Alice Wexler is a PhD in history, so her focus would not necessarily be with the medical aspects as much as the disease’s place in history as well as its effect on the families.
The beginning of The Woman Who Walked Into the Sea examines the woman in the title and generations of her family prior and after her. Because the disease is an autosomal dominate disease, each parent has a 50/50 chance of passing it on to their offspring. And because the disease doesn’t manifest itself until the afflicted person is in middle age, it is likely that s/he has already had children, thus continuing the disease cycle.
Because Dr. Wexler is such a compelling author, I found what would normally be dry genealogical information to be strangely fascinating as she followed the beginnings of the disease on Long Island seen and documented by Dr. George Huntington until almost present time. She also takes time to give a complete picture of Dr. George Huntington and his family.
As immigrants came to America’s shores in the twentieth century, the ugly swirl of Eugenics followed as Americans decided that those who didn’t fit the standards of health and intellect should be kept out the United States or be sterilized. The author deftly places Huntington’s disease role in the Eugenics debate; anyone who is interested in Eugenics should definitely want to read that section of the book if not the entire tome.
Please don’t let me discourage you from reading this book if it sounds like your cup of tea. It is very well written and the subject matter is interesting as well. It’s just that in comparisons to other medical history books, this isn’t one that I’d necessarily re-read.
I usually end my book reviews of e-books with an actual review of the e-book format itself. Yale University Press did an excellent job with the e-book and I don’t recall any cussing or balling of my fists in anger as I’ve done with other books. Well done!
I give this book a solid 4.5/5 Stars
(Reviewed 01 January, 2014)