Inside the O'Briens
Inside the O’Briens
by Lisa Genova was a fantastic book that gives readers an insight as to what a
diagnosis like Huntington’s disease means not just to the individual, but to
their families for generations and their community as well. Huntington’s is a neurodegenerative disorder
that impairs one’s cognitive, physical, and psychological function. One aspect of Huntington’s that
differentiates it from other neurodegenerative disorders is that it is an autosomal
dominant disorder, which means a child has a fifty-fifty chance of developing
Huntington’s if a parent has the disease (Apostolou et al., 2018). Huntington’s can cause significant stress on
family units as family members fear that they might have the gene and as they
try to care for their loved ones’ that have the disease as their health
deteriorates to the point that they need full time care.
Inside the O’Briens
tells the story of a man named Joe O’Brien who develops Huntington’s
disease. The diagnosis is a shock to the
family, and the majority of the book details their thoughts and emotions as
they try to process the changes going on in Joe and wrestle with the fact that
his four children and grandchild could have also inherited the Huntington’s
gene. Two of the children are tested and
are positive for Huntington’s. One of
the children, Katie, wrestles with whether to complete the test or not.
The children are seeing the impact Huntington’s is having on
their dad. He is starting to experience
chorea, which is spastic, uncontrollable movements. He has impairments in his balance and
coordination, explosive anger outbursts, suicidal ideation, and impaired
cognitive function which is causing him to struggle with executive
functioning. She knows if she tests
positive that she will suffer like her dad, and she does not think she will be worthy
to marry, have children, or pursue her dreams if she knows she will die
prematurely and lose motor and cognitive function like her dad is
experiencing. On the other hand, if she
is negative she will struggle with guilt for living when her sister and brother
have tested positive.
This book gives a great example of the thoughts and
struggles family members have when someone is diagnosed with Huntington’s. As a future occupational therapist this book
has been very valuable to read. In reading
about Joe’s interaction with his neurologist, I was reminded of how important
client-centeredness is when we are treating clients. Joe and his wife were very upset with how the
neurologist mentioned that he might have Huntington’s because they felt like
she told them in a very flippant and cold manner. They felt that she was not thinking about the
implications this would have on him and his family by throwing a diagnosis like
Huntington’s out there without definitive proof. This interaction caused them to experience a
great amount of anxiety as they waited for his genetic testing. This portion of the book was a good reminder for
me to always have the clients’ interest first and to be sensitive to how they
are processing their diagnoses and always exude a caring and empathetic attitude.
While a diagnosis like HD is devastating to the individual
and the family, this book also helped me to see some of the redeeming aspects
of a diagnosis like Huntington’s. Over
the course of the book, I could really see how HD brought the family closer
together. The O’Briens know that they
have a limited time with Joe and that several of the children will eventually develop
HD. They try to live each day to the
fullest and relish every moment they have with each other. Because Joe was a police officer, he knows
that he could have easily died in the line of duty. He is thankful that he has lived as long as
he has when he witnessed many fellow police officers die. His wife, Rosie, knows this as well, and she
has tried to take extra care of Joe by telling him she loves him more often,
kissing his forehead more often, and showering him with extra grace since his
diagnosis.
Throughout the book Joe’s daughter, Katie, struggles with
whether to move to Portland with her boyfriend or not. Ordinarily, this action would have enraged
Joe and Rosie, and they would have forbidden it. Because they both know that time is limited,
and family is what is most important, they give Katie their blessing to pursue
her dreams and are very supportive. There
are many other examples in the book of the family drawing closer together because
of the HD diagnosis culminating with whole family coming to Katie’s last
genetic testing appointment to support her as she finds out whether she is
positive for HD or not.
I cannot fathom enduring what many families with HD like the
O’Briens have, but I enjoyed seeing a few glimpses of joy and thankfulness in
the midst of a horrendous disease. While
this book is fictional and not based on a real family, I imagine most families
react like the O’Briens by trying to relish every moment with their loved
ones. As a future OT, I want to help
them live each day to the fullest and help them to adapt to changes in their
body and remain functional and independent for as long as possible.
Apostolou, P., Reiken, S., Yuan, Q.,
Wedderburn-Pugh, K., Benoit, F., Moscona, A., ... & Marks, A. (2018).
Exploring the Role of Ryanodine Receptors in Huntington's Disease
Pathophysiology. Biophysical Journal, 114(3), 307a.
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