Inside the O'Briens

Inside the O’Briens written by Lisa Genova was a great way to illustrate the reality of Huntington’s Disease through the everyday life of a “normal” family. Huntington’s disease is an inherited neurodegenerative disease that causes you to lose control over your ability to move, and affects cognitive thinking and behavior. The disease is autosomal dominant, meaning that offspring of people with HD will have a 50/50 chance of also inheriting the disease.

In the book, Lisa Genova did a wonderful job bringing such an awful disease to life and being so raw with her words to make you feel like you were actually apart of the O’Brien family. It doesn’t affect just the person with the disease, but it truly takes a toll on the entire family. Physically, mentally, and even spiritually. Joe O’Brien, who is the strong, fearless leader of the family finds out that he has HD, everything starts to come full circle and he realizes the real reason his mother died. When he and his wife eventually tell the rest of the family, you really begin to see everyone’s true colors. Each of their real personalities begin to arise. You see the ones who live in fear of every trip, every fall, every mishap, being a symptom of HD, but at the same time, being too scared to know the truth and live with the thought that HD will kill them (Katie and Patrick). You see the ones who have no choice but to find out if they carry the gene because they are trying or have already started a family of their own and want to know if they will pass the gene down to their offspring or it will end with them (JJ). And then we see the ones like Meghan. The ones who don’t give it a second thought and agree to be tested and face the disease head on. Meghan has a positive attitude, loves where she’s at in life, and is going to live every day to the fullest and take full advantage of every opportunity she’s given while she’s still healthy enough to do what she loves: ballet.

I think it’s important to realize that with Huntington’s Disease, you never know your fate. But then again, nobody knows their fate. Not even people who are perfectly healthy. In Inside the O’Briens, we see that Katie lives in fear of the unknown of her genetic makeup, and also in fear of her future if she does have it. I think it’s even more important to realize that even without Huntington’s Disease, you don’t know your fate. It was made clear several times throughout the book that everybody is going to die. I think this was a very powerful outlook on the disease, every disease, and life in general. No matter what you have, or what you don’t have, you will die regardless.

After finishing the book and realizing the ending wasn’t exactly how I pictured the author to leave her readers, I think it’s a perfect representation of the underlying message in the book. Regardless of knowing, or not knowing, ultimately, we do know. Maybe we don’t what Katie’s genetic testing for Huntington’s Disease was, but that isn’t what matters. What matters is that she finally did something that she wanted to do and didn’t base her decision off of something she couldn’t do anything about. I would highly recommend this book and I encourage people to read it, not only to gain insight on an overlooked genetic disease, but also to raise awareness and see the underlying messages that Lisa Genova so wonderfully wrote about.

“Life is a near-death experience. Stumble around in giddy gratitude while you still can.”

– Jen Sincero

Occupational Profile

Name: Joe O’Brien

Client Report	Reason the client is seeking OT services and concerns related to engagement in occupations (may include the client’s general health status)	Client seeks OT services after being diagnosed with Huntington’s Disease. Client is concerned with abnormal behaviors such as rage, anger, chorea, balance issues, memory loss, and other symptoms that come along with HD.
	Occupations in which the client is successful and barriers or potential barriers to his/her success in those occupations (p. S5)	Client is successful in driving, eating, self-care, sleeping and walking dog. Barriers include loss of balance/falling, dropping things, arriving to work late, frequent memory loss/remembering issues, writing unorganized/incorrect police reports
	Personal interests and values (p. S7)	Values wife, children, family, dog Yaz, friends, RedSox baseball, his job as a Boston police officer
	The client’s occupational history/life experiences	Current police officer for the Boston PD, was a witness and assisted with victims of the Boston Marathon Bombing, husband, mother died from HD, father died from prostate cancer
	Performance patterns (routines, habits, & rituals) – what are the client’s patterns of engagement in occupations and how have they changed over time? What are the client’s daily life roles? Note patterns that support and hinder occupational performance. (p. S8)	Lives on the 1st floor of a 3-story house with his wife Rosie, son Patrick, and dog Yaz. ROUTINES: wakes up, self-care, breakfast cooked by his wife, goes to work as a police officer, occasionally works overtime directing traffic outside of Fenway Park, or outside of a concert. Working long hours affect his balance from standing so much, and his knee that has been bothering him. ROLES: husband, father, police officer, friend, co-worker, crime-fighter/law-enforcer, grandfather. His forgetful mind hinders him from remembering important details, or any details at all, for writing them in his reports which are negatively affecting his job.
Context	Aspects of the client’s environments or contexts, as viewed by the client (p. S28)	Supports to Occupational Engagement:	Barriers to Occupational Engagement:
	Physical	Walks the dog, which keeps him in shape and could help to prolong symptoms of HD.	Loses his balance and is unstable and falls easily and frequently, which could be unsafe.
	Social	All of the O’Briens live in the same house, so they can help if they are needed. RedSox baseball, going to have a few beers with friends, and his new grandson provide distraction from recent diagnosis of HD.	Recent persuasion of quitting job as a Boston police officer increases stress and gives him more time to think of the disease he has and hinders him from interacting with people in the community at work.
	Cultural	Is Catholic, but quit going to church several years ago, but has recently started walking to church after services to pray alone.	Doesn’t know if what he is believing in or praying to is helping him mentally, which increases constant fear and worry for his future. Also adds on to long list of mental issues he already inherited from HD.
	Personal	44 y/o male. Grew up in Boston. Mentally strong leader who does everything he can to provide for his family, even though it’s not much.	Worries that family will lose all hope if he shows signs of defeat from HD.
	Temporal	Is trying to positively look towards the future and see his new grandson grow up, and also trying new things and checking off experiences of his bucket list.	Sees the emotional and physical hurt on his wife’s face and body of the pain she is feeling having to adapt to new lifestyle dealing with husband and children suffering from HD, which doesn’t help his emotional state and makes him sad, when he should be finding every positive aspect in life at the moment to prolong HD progression.
	Virtual	Watching the Boston Red Sox on the television with his family allows him time and ability to create memories together and bond over something they love.	Sometimes the remote is not near his chair, and he struggles to get up without falling if he is at home alone. Also, by getting up to get the remote, he is putting himself in danger of falling and hurting himself.
Client Goals	Client’s priorities and desired target outcomes (consider occupational performance – improvement and enhancement, prevention, participation, role competence, health & wellness, quality of life, well-being, and/or occupational justice) (p. S34)	Be able to prolong progression and symptoms of Huntington’s Disease and spend more time with family and watch children and grandchildren grow up without having HD. Client wants to be able to button and unbutton clothes without issues, walk without falling, and do everyday tasks without being stared at or judged by community.

Genova, L. (2015). Inside the O'Briens. New York City, NY: Gallery Books.