Alice Peterson, (2019) If you were Here, London, Simon and Schuster
This is a novel around Huntington’s Disease (HD). That in itself is a rarity. Readers may wonder if a novel on such a subject can work.
Central to the plot are three women of different generations. The first in grandmother, Peggy. Her husband died of HD in the period before the book is set. The next generation is Beth. Like her father she also died of HD. However, her voice is important for the plot through her diary. The youngest is Beth’s daughter and Peggy’s granddaughter Florence, known as Flo. Each of the women has a distinct voice.
A novel needs a degree of tension to keep us turning the pages – often an unresolved issue. A standard ending is to draw together the threads to resolve the problem.
On the face of it the issue does not sound as if it can carry a plot. But it does. Flo lives, works and loves dealing with a real-life issue. The central issue is should Flo have a DNA test to reveal if she has the disease? Since HD is autosomal dominant there is a 50% chance that her mother has passed it on. Other things being equal (which they are not), if a sufferer has children, they also each have a 50% chance of inheriting the disease. We need to add to that the possibly around 10% of cases that arise spontaneously.
In many genetic disorders there are unambiguous benefits to diagnosis, in the UK newborn children are tested routinely for Cystic Fibrosis. HD is more problematic. As is revealed through the actors of the novel, HD hits home later in life and is incurable. The progressive nature and very unpleasant later stages may be a blight hanging over a young person. Would such a person want to know? The test could bring relief and a happy future. Or it could be a sentence of an early death preceded by suffering. Can you live with the uncertainty and just get on with life? Or would it be better to be able to plan the way forward? This is a real dilemma for those with the family history.
We focus on young Flo and her very full life. She is a real three-dimensional woman as are the people around her.
The debates and guilt associated with previous decisions hang over the young. The counsellor is a vital part of the plot and her contribution is excellent.
In the mix of the traditional approach to this disease is the genetic revolution. This is an area of medicine which is changing fast. The clinical trial referred to in the book is ongoing. Not mentioned, however, are other useful approaches.[i]
Can it work as a novel? Yes! It is dynamic, it flows, it tugs on the heart strings.
Would it be of use for people with a family history of HD? I feel that it would. A great deal of information is communicated without being heavy. It is shown through the characters not preached by an authoritative voice.
[i] See: Philip R. Reilly (2015) Orphan: The Quest to Save Children with Rare Genetic Disorders: The Quest to Save Children with Rare Genetic Disorders, New York, Cold Spring Harbor Laboratory Press