4.0 out of 5 stars -- Huntington's Disease. "It has been called the cruelest disease known to man."
HD
takes everything -- your ability to move purposefully, to speak, to
eat, to swallow and to perform activities of daily living. Although it
doesn't rob you of consciousness or your intellect, you cannot
communicate and are well aware of those losses. Left to writhe and jerk,
secured into a bed or wheelchair, you watch as bit by bit, over 10-20
years, you finally die of pneumonia or some other opportunistic
condition. There is no cure and treatment is limited and not very
effective. You have likely lost your job, home, money, friends and,
worst of all, you may also have to see your children -- who have a 50%
chance of inheriting the mutation of the HD gene -- start their
inexorable decline with onset of symptoms. In this very moving novel, we
see the destruction that HD brings to generations of a family.
Joe
O'Brien is a Boston cop. He loves his wife, Rosie, and his 4 adult
children who all still live at home. They are a close knit Catholic
Irish family, and, though they don't have much in the way of material
things, they do love each other. When Joe starts experiencing mood
swings and begins to have unusual movements he's tested and diagnosed
with HD. What follows is a description of how this disease affects each
member of the family. The biggest part of the book is not how Joe and
family handle his disease and symptoms, though that is a huge part of
it, but how one of the daughters, Katie, anguishes over whether or not
to be tested for the gene mutation. With a 50% chance of having it --
does she want to know or not. And, if she does find out, how does that
affect the rest of her life.
I love this type of storytelling -- a
family drama and a medical condition with lots of clinical details and
information. It was devastating to read about HD and I became attached
to the characters in their individual struggles though I wished the
author had focused on all of the children and more about Rosie, rather
than just Katie. I did have a little trouble with her constant angst.
The way the book ends really irritated me -- all that build up and
then...nothing. Some say the ending left things on a hopeful note, but I
felt cheated.
This would make a great book club book as readers
could explore and learn about the condition and then decide for
themselves if they would take the test and want to know the results. Yes
or no, definitively, do they have it or not. And what would knowing
mean.
Thank you to NetGalley and Gallery, Threshold, Pocket Books for the e-book ARC to review.
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