Updated: Mar 4
As many of you know Huntington’s disease isn’t on the public radar like other diseases such as AIDS, cancer and heart disease. Although the awareness is getting better it is classed as a rare disease. Many people will know that our HD Celebrity was the late folk singer Woodie Guthrie, who died of the disease in 1967 or the amazing Charles Sabine who was an NBC News reporter *and someone i highly recommend hearing speak as he is very inspiring*, Huntington’s has no celebrity connection like Michael J Fox has with Parkinson’s Disease.
Inside the O’Briens is 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. We all know Huntington's Disease is a family thing, many HD charities have a moto around this!
Our main character in this book is Joe O’Brien who is a policeman in Boston and of Irish heritage (like many American's) Joe married his high school sweetheart, Rosie, and together they have four children, two boys and two girls. Joe begins to suffer from involuntary movements which 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.
I felt very drawn into this storyline, as many families are not or were not aware that Huntington's Disease was in their family and sadly, it bites them in the ass! Lisa tells a heart wrenching and gripping story, through the mind of Joe and what it is like to get that positive diagnosis and worry about his four children and wife. In this story, we also get an insight into his daughter who is at risk of the disease because of her father's diagnosis *for anyone who doesn't know, any child to a parent with HD has a 50% chance of inheriting the disease*.
“Every breath is a risk, Love is why we breathe” – Katie O” Brien
Meghan, Joe's other daughter 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. Honestly, i wish i could be more like Meghan, and i was incredibly jealous of her positive attitude! 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. I feel like Lisa did her research on Huntington's Disease, she has a positive daughter who just throws herself into living her best life (Meghan), the son who sadly has found out about his father and himself too late and already has a kid himself! *Instant guilt* then Patrick who doesn't cope with his father's diagnosis, we read about his drinking, fighting and disappearing and then knocks a girl up! and lastly Katie. Katie’s storyline 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.
The book sheds great light on the dilemma siblings face with Huntington’s disease and whether or not they should or want to get tested. Im sure many people in a HD family with siblings can relate. I always think about what might happen to my brother and i, who will have it? Will we both? Who will care for us? Will one of us suffer from survivors guilt? The questions are endless!! Sadly it's not just your personal diagnosis you worry about it is also your brother or sister. The author focuses on one sibling, Katie and highlights a lot of her journey.
Lastly there is Rosie, the wife and mother! Rosie is I think somewhat overlooked 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 did a good job but could have done better. It mentions a lot of Joe dropping items and damaging the house. He then progresses to using a sippy cup throughout the end of the book. I understand it must be incredibly hard to portray this in a book and obviously, the deterioration of a HD patient takes place over several years.
A mentioned Joe is a member of the Boston Police Force, and he sadly ends his career as a while on duty. He is taken off post due to involuntary movements, which sadly is something many HD patients are used to. 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. Something Rosie struggled with but Joe was trying to do what was best for the family. Sadly sometimes, families have to do things on paper to protect one another.
As Huntington’s Disease is a condition that 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 through another book. *Any chance of Inside the O'Briens 2.0?*
A massive story within the book that i appreciate Lisa shedding some light on is suicide. 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 as my father is the only person in my family I know who suffers from Huntington’s disease or would have and continue to watch suffer from the 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 of the family and highlights many different storylines 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.