As many of you know Huntington’s disease isn’t on the public radar like other diseases such as AIDS, cancer and heart disease. Aside from folk singer Woodie Guthrie, who died of the disease in 1967 or Charles Sabine who was an NBC news reporter, Huntington’s has no celebrity connection like Michael J Fox has with Parkinson’s. Inside the O’Briens written by author Lisa Genova, Lisa does a great job highlighting the struggles of Huntington’s disease throughout an entire family and how it affects different members differently.
Joe O’Brien is a police man in Boston of Irish heritage (like any typical American) luckily for him he is married to his high school sweetheart, Rosie, and together they have four children, two boys and two girls. Joe begins to suffer from involuntary movements which in turn worries his wife. Joe learns he has Huntington’s disease, and even though his mother was never diagnosed, he realizes it was his mother who passed it to him, Joe’s mother was thought to be a violent alcoholic and died in a state mental institution. Lisa tells a heart wrenching and gripping story, through the mind of Joe and what it is like to gain that positive diagnosis and worry about his four children and wife, we also see the side of his daughter who is at risk of the disease because of her fathers diagnosis.
“Every breath is a risk, Love is why we breathe” – Katie O”Brien
Meghan, is a prima ballerina for the Boston Ballet she sadly is diagnosed with the HD gene. Throughout the book Megan has the character of “no fear” she gets the test done and takes control of her life, she always seems to be in control. Then there’s J.J. aka Joe, Junior who is a firefighter, married to Colleen who is pregnant, something we don’t find out until Joe’s diagnosis. J.J sadly has the HD gene. Patrick, a bartender who still lives at home with the folks, seems to stay out of the lime light until the end of the book, he seems to handle the positive diagnosis of his father worse than all. Throughout the book we hear about his drinking, disappearing and getting into fights. He then knocks up a girl! The book sheds great light on the dilemma siblings face with Huntington’s disease and weather or not they should or want to get tested. Sadly its not just your personal diagnosis you worry about it is also your brother or sister. The author focuses on one sibling, Katie. Katie’s story line is extremely relevant to the issues faced by those suffering from Huntington’s disease. Katie struggles with the testing process and takes some time to complete it. It covers her relationship with Felix and the fears that someone faces when inheriting this genetic disease. Lastly there is Rosie, the wife and mother! Rosie is I think some what over looked in the book, I think she has the toughest character and toughest position in the family. She not only has to watch her husband deteriorate she also has the worry of her four children! Two of which we know has the Huntington’s gene. Rosie does what most do and turns to her faith, already a religious woman she finds comfort in praying for her family. The book I feel attempts to show some light into the detrition of Huntington’s Disease, I feel like it done a good job at the but could have done better. We see a lot of Joe dropping items, and damaging the house. He then progresses to using a sippy cup throughout the end of the book.
Joe sadly ends his career as a Boston police officer, while on duty one cold winter day he is taken off post due to the involuntary movements. this is a pivotal moment in the book and something I’m sure most readers suffering from the disease can relate to. Due to his early retirement he is not entitled to his full pension, and living in the United States of America, you either want a kick ass job or a kick ass pension. Joe had neither and a family to support, so after seeking advice from a solicitor, Rosie and Joe get a divorce on paper so the government cant take what little money and assets the family has.
As Huntington’s Disease is a condition which deteriorates over a period of time, considering the time frame is between 10 and 25 years the books can not physically cover everything! We sadly do not get to see the deterioration of Joe or read about it, this is something people could do with being educated on, possibly though another book. Sadly a huge problem with Huntington’s Disease is suicide, and we see this through Joe when he tried to take his life several times! His daughter breaks through to him, one of the most emotional chapters of the book his daughter sums it up for everyone watching a parent pass toward the unavoidable: “We don’t know anyone else with HD. You’re the only example we have. We’re going to learn how to live and die with HD from you, Dad.” This is something I can personally relate to, my father is the only person in my family I know who suffers from Huntington’s disease. I can honestly say he has shown me how to live my life and manage Huntington’s. For example joe reminds me of my father, he struggled at the beginning and then he owned it! Okay so my father isn’t going to wear a hello kitty band aid but he has accepted it!
I enjoyed reading this book a lot, it covers every aspect of the members in the family and highlights many different story lines which people can relate to. I personally can relate to Katie and found comfort with her story, I feel like I would like a book just on her story, thoughts and feelings. As a 24 year old in a stable relationship I can relate to her on the fears of getting tested and the fear of your personal future. Watching a loved one die from this ugly disease and worry not only for myself but also my brother and our future together!