Review: Inside the O’Briens – Lisa Genova

By Lakshini Mendis

This review first appeared in the Scientista Foundation blog

In her new novel, Inside the O’Briens, the New York Times best-selling author of Still Alice, Lisa Genova, presents a moving portrayal about a family struggling with Huntington’s disease (HD).
HD is caused by a faulty gene that leads to the progressive breakdown of brain cells, which results in its hallmark symptom, chorea (uncontrollable dance-like movements). It is known as a ‘family disease’ because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. About one in every 10,000 people has HD, but one in every 1,000 is touched by the disorder, whether they are at-risk of inheriting it, a caregiver, family member or friend. Currently there are about 900 families  affected in Auckland.

The story centres on the O’Briens – Joe O’Brien, his wife, Rosie, and their four grown children, JJ, Patrick, Meghan, and Katie – who live in Charlestown, MA. The O’Briens are just another normal family, sibling rivalries and all, which make them very relatable. The difference is that Joe has HD. We follow Joe from his earliest symptoms, to his diagnosis, and get an insight into what living with HD is like. We see how it affects his job in the Boston PD, and the ramifications (both positive and negative) his diagnosis has on his family.
Given that the faulty gene causing HD was found in 1993, ‘at-risk’ individuals can now choose to find out their gene status by taking a genetic test. We see the O’Brien kids, especially Katie, the baby of the family, grappling with this complex choice. It is not a decision that many of us have to consider in our early 20s, but Genova raises and explores some poignant considerations. Is the constant anxiety of not knowing better than being confirmed gene-positive? What happens if you are gene-positive? Do you choose to marry and start a family, given the risk of passing on the gene to your own kids?
Genova, who holds a PhD in Neuroscience from Harvard, effortlessly educates her audience about the science and genetics behind HD, without the complexities of a clinical textbook. It is one of the reasons I love this book.
The other reason I found this book a riveting read is testament to Genova’s storytelling capabilities. Genova really captures the human essence of being a part of an HD family, and gives us a window into what this feels like. The O’Briens were so compelling… so real! I found myself worrying with the O’Briens, crying with the O’Briens, feeling their pain and going on the same journey with them. I’m sure their story will resonate with many HD families across the world. However, because at its core, this story is about family, resilience, and love, it is relevant to all of us. I highly recommend it for your winter reading!
“Every breath is a risk. Love is why we breathe.”
— Katie O’Brien, Inside the O’Briens

May is Huntington’s disease awareness month… educate yourself here:
Huntington’s Disease Association (Auckland) Inc:
Provides support for those living with HD in Auckland, by educating the community, providing the right support services, and furthering research to manage and cure HD
HDYO: the Huntington’s disease Youth Organization site has tons of information about the disease and resources to help those with juvenile HD or with a parent who has HD (HDYO NZ is currently being set-up and could use your support!)
HDBuzz: Co-founded by Dr Ed Wild and Dr Jeff Carroll, this site reports the latest Huntington’s disease research news, without the jargon

About the Author

LakshiniScientista’s co-Editor-in-Chief, Lakshini Mendis, is doing a PhD focused on how the human brain changes in Alzheimer’s disease at the Centre for Brain Research in Auckland. She is passionate about good science communication and changing the stereotype of women in STEM. She also writes for HDBuzz. When she’s not working, you can usually find Lakshini curled up with a good book, spending time with family and friends, or exploring somewhere new. Find her musings on Twitter here!

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CBR book reviews: Pieces of Mind 21 Short Walks Around the Human Brain

Pieces of Mind: 21 Short Walks Around the Human Brain

By Michael C. Corballis
Reviewed by Professor Michael C. Corballis, Cognitive Neuroscientist

It’s not often authors get the chance to review their own books, and I hardly know where to start. It’s my favourite book because it’s still available, and more sales can help a semi-retired academic continue to drink good wine. 

I haven’t read the book myself, but those who have tell me it’s a great book to have by the bedside, probably because it can send you quickly to sleep. It’s also quite short, and doesn’t take up much room in either your luggage or your brain.

The beginning of the book also introduces a book published in 1891 by my great grandfather, James Henry Corballis, entitled Forty-five Years of Sport, which offers some great advice on golf, among other idle pursuits. You can still find this on Google, of which my great grandfather was a great fan. The family would be grateful if you would consider this one as well when making your purchases.

CBR book reviews: The Astonishing Hypothesis: The Scientific Search for the Soul

The Astonishing Hypothesis: The Scientific Search for the Soul

By Dr Francis Crick
Reviewed by:  Jane Evans, PhD Student

In this book, Nobel laureate Francis Crick explores the hypothesis that human consciousness is basically a complex pattern of neurons in your brain. 

The Astonishing Hypothesis is that “You,” your joys and your sorrows, your memories and your ambitions, your sense of personal identity and free will, are in fact no more than the behavior of a vast assembly of nerve cells and their associated molecules“.

Do not expect to be provided with ultimate proof, or answers. A large body of anecdotal and promising evidence is presented, however, as tools to further investigate the hypothesis. Largely based around visual neuroscience, the human visual cortex and neural network computation theory are both the focus of the book. 

Not a light read by any stretch of the imagination, but thoroughly interesting both for insight into progress, as well as limitations and frustrations encountered linking reductionist and philosophical theories.

CBR book reviews: I’m not stupid, just disabled

I’m not stupid, just disabled: some serious chitchat about life after a stroke
By Wolfgang Haufe
Reviewed by:  Jane Evans, PhD Student

A personal recollection of the journey following a stroke, this book provides the unique perspective of a stroke survivor. One man’s story is interspersed with observations about life following stroke. 

I personally came away with a greater sense of awareness. I think anyone who has had, or knows someone who has suffered a stroke is likely to take home something from this book. Even if it is simply the ability to better relate to people with a disability.

CBR book reviews – The Human Brain – A guided tour

 

 

By Professor Susan Greenfield
Reviewed by:  Jane Evans, PhD Student

A great introductory book comprised of five chapters loosely based on her public lectures. As a reader, you get a real sense of the author’s genuine interest in telling you about the brain.  

A competent guide, Susan moves from looking at regions of the brain, to look at brain functions. The tour then heads to the building blocks of the brain, finally exploring the mind and memory. A relatively short read, no topic is covered in great depth, but it is a nice overview.

CBR book reviews – Fixing My Gaze

 

By Professor Susan Barry
Reviewed by:  Alice Lagas, PhD Student

Warning: do not read Susan Barry’s book “Fixing My Gaze” if you are not prepared to become fascinated by vision research. Not only does she take you with her on her journey, she also makes you aware of the most complicated vision processes.

As a toddler she had multiple operations on her eye muscles for having strabismus (eye turn). The operations were successful but as for many children who had this surgery because of a tiny difference in eye alignment, her brain still refused to fuse the two images from each eye together. In her case her brain dealt with this confusing difference by alternating vision from each eye separately. Because vision tests at school measure vision for each eye separately, they assumed she had perfect vision and as a result her reading difficulties made her become categorised as a hard learner.

It was not until her 40s, after lecturing vision science for 20 years, that she was able to pinpoint the difficulties she had in daily life, when she was sent to a specialised (developmental or behavioural) optometrist for visual training. After one year of this training on how to fuse the two images together (and hours of homework), on one morning for the first time in her life she woke up feeling calm. She realised that for the first time in her life she no longer sees jittery images. Not only does her brain now fuse the two images properly, but on top of this she also gained proper depth perception (even though stereovision is supposed to be fully developed at around one year of age).

When basic sensory processes are healthy, you barely realise how amazing and significant these processes are. So I warn you again that by reading Barry’s book, you’ll start to enjoy and appreciate the 3D-ness around you after reading it.

Neuroscience book reviews: The Immortal Life of Henrietta Lacks

 

By Rebecca Skloot
Reviewed by: Amelia Van Slooten, PhD Student

This is a captivating true tale about the family of a poor African-American woman called Henrietta Lacks, who unknowingly contributed to many fundamental scientific discoveries of the twentieth century. This is the story of how cancerous cells were taken from Henrietta before her death and how they became the world’s first immortal human cell line: HeLa. But more than that, it is the story of how Henrietta’s family coped with finding out that her cells had been taken without permission, their struggle to understand what cells were and what it meant for her cells to be “immortal”, and their treatment at the hands of scam artists, journalists, doctors, scientists and lawyers after the woman behind the cells was revealed. 

We are taken on Rebecca’s turbulent journey over more than a decade as she tries to contact Henrietta’s relatives and discover the truth of what happened at John Hopkins Hospital in the 1950s. Whilst Henrietta is the reason for writing this book, her daughter, Deborah, is the heart of this tale. The author formed a close relationship with Deborah and this is evident in the way Deborah is portrayed – her lively spirit, her reluctance to consult with yet another reporter and eventually her determination to find out everything she can about her mother and guard the knowledge ferociously. Despite her poverty, poor education and declining health, Deborah’s battle to understand how her mother’s cells were taken and used is inspiring.

“The Immortal Life of Henrietta Lacks” tells us startling facts about the state of research on human participants in the 1950s, how informed consent did not exist at the time and how there is still controversy today about who owns our tissues once they leave our bodies. We learn how HeLa cells have been to the moon, have helped developed the polio vaccine and have accelerated cancer research. But the triumph of this book is Rebecca’s vividly portrayed characters; the real people behind the science.

I cannot recommend this book enough to anyone who has ever worked with human cells and anyone who has ever heard about the use of humans cells in research. Without Henrietta Lacks we would never have got this far.