A story that will break your heart, yet steadfast in hope and acceptance. A shocking read, though only because of the lack of awareness of the disease.
The O'Brien family in Boston, two years after the Boston Marathon bombing. Joe O'Brien knows what death looks like, he has seen it with friends and foe, he is one of the Boston Police, as his father and grandfather were before him. But now he is about to see what life looks like, in the most unexpected way from a personal perspective. The father of upcoming adult children, he of course speculates on the futures they will have.
Joe barely remembers his mother. She was ill when he was still a child, hearing rumors about her, "Drank herself to death" was most prevalent. But he wasn't sure. What he remembered most in his visits was that she was not much more than a skeleton, tied into a chair and force-fed. But lurking in that shell was a love for her boy, and a woman with a death sentence pre-ordained.
The O'Brien family in Boston, two years after the Boston Marathon bombing. Joe O'Brien knows what death looks like, he has seen it with friends and foe, he is one of the Boston Police, as his father and grandfather were before him. But now he is about to see what life looks like, in the most unexpected way from a personal perspective. The father of upcoming adult children, he of course speculates on the futures they will have.
Joe barely remembers his mother. She was ill when he was still a child, hearing rumors about her, "Drank herself to death" was most prevalent. But he wasn't sure. What he remembered most in his visits was that she was not much more than a skeleton, tied into a chair and force-fed. But lurking in that shell was a love for her boy, and a woman with a death sentence pre-ordained.
What is inside the O'Briens? Subtle at first, Joe doesn't even notice random quirks. Not until his body starts doing things that he doesn't intend to do, such as go left and promptly goes right. Not much favored upon by the hierarchy of the Police Dept. He can't keep still, his feet and eyes are constantly moving, but he is still unaware. Soon his limbs take on a life of their own, swinging out suddenly, occasionally accidentally hitting someone. When things like this happen fierce uncontrollable anger overtakes him; he is unable to relate to these events, especially the terrifying anger. Eventually Rosie, his wife, is finally able to get him to a neurologist somewhat willingly...one for movement disorders. He fears a "brain" doctor. The diagnosis return is slow and his mind begins to drift to his mother dying in the hospital.
Genetic testing comes back with the ill-fated genetic mutation everyone was afraid to contemplate...Huntington's Disease (HD). This is a nightmare that will not go away. Ever. Do his adult children already have it coded into their genes? Remembering his mother, he now realizes that she lived and died with it. There is no treatment, no cure. It doesn't present itself until around the childbearing age of your children. Exactly according to the plan that Joe did not set for himself. His oldest son is married and desperately trying for a baby; They just announced that they were finally pregnant. His oldest daughter is a ballerina with a good company, the second daughter is in the early throes of love, and ready to embrace the world. His youngest son is showing signs already of juvenile HD which will put him dying much younger than usual. There is no long life with HD.
Yes, this book gives probably the best look at how one family handled the worst, and what worse was still to come. Lisa Genova certainly is aware and tells her story with great passion, research, vulnerability, yet hope for a future, distant or not. We never know what we are capable of in our lives. Will we become stronger, fight the big pharmaceuticals for not giving time and money toward research on these types of orphan, rare, or hidden diseases? Or will we just give up (as unfortunately many do when they learn their fate). This book talks of 4 generations of a perfectly healthy family until suddenly the hidden monster surfaced leaving at least 3 of Joe's adult children, and the possibility that 1 of his grandchildren will be tested positive when he is old enough to be tested. Novel or not, this is a comprehensive look at the real disease.
A personal postscript to Lisa Genova: One reason I'm personally impacted with this book...We had a friend once. People seeing her walk the streets of town all had the same idea: Drunk. She was a lovely lady and enjoyed what she could. Gone for several years now, we still think of her strong will to live to the best of her ability. Thank you so much Lisa, for this heartfelt book, but even more to show with strength of character we can choose to live with, as close to our own outcome as is medically possible. Your writing is consistently inspiring and bringing some much-needed awareness to a disease unknown to so many and so little understood.
Disclaimer: I am grateful to the publishers at Simon & Schuster for allowing me a copy of this very well-written book in exchange for an honest review; maybe it will help people to understand that there are diseases that actually have NO cure. With modern miracles happening so much faster than before, we might not even realize such a thing is a reality.
