Richard is a middle-aged, highly accomplished and successful concert pianist whose whole life has been focused on music. However, his personal life has been rather less successful: following an acrimonious divorce from Karina, and a total lack of contact with his daughter Grace, he is now living alone in an apartment in Boston. When he first begins to experience a problem controlling his right hand he puts it down to stress but, when this becomes worse and he is forced to cancel concerts, investigations show that he has ALS, Amyotrophic lateral sclerosis – more commonly known in the UK as Motor Neurone Disease. Although the symptoms start in his hands, he knows that the relentless and progressive nature of the disease will, eventually, affect all his muscles and lead to total paralysis.
Although in the early stages of this progression he is able, with the help of daily carers, to remain in his apartment, he eventually realises that he has reached the time when he needs expensive, full time care. At this point Karina, still living in the family home and knowing that Richard cannot afford the twenty-four-hour care required, reluctantly invites him to return to the family home where she becomes his full-time carer. The couple had met at music college where she had been at least as talented a pianist as Richard. However, her potential became the neglected “victim” of his growing success, his concert tours and her need to care for their daughter. She now works from home as a piano teacher but is full of regret and resentment about the career she sacrificed, although when she is honest with herself, she is aware that she could have done more to pursue this, especially once Grace went to college. She is also angry and resentful about the ways in which his long absences meant that she and Grace often felt neglected, feelings exacerbated by the various affairs he had. As Richard and Karina begin the steep learning-curve of how to deal with the terrible reality of his condition and his increasing physical dependence, they struggle to find ways to re-engage with each other and to reconcile their differences before it is too late.
Lisa Genova, as she did when writing about Alzheimer’s in her novel Still Alice, has written a moving and well-researched story about the devastating progression of ALS. She demonstrated, in an intensely powerful way, what it feels like to be faced with the experience of living with a disease which unpredictably, but relentlessly, paralyses every single muscle in your body, progressively robbing you of the ability to use your hands, to walk, to chew your food, to swallow without choking, to communicate with coherent speech and, ultimately, to breathe without mechanical help. She also captured, in a raw and affecting way, how this awareness remains acutely distressing because, whilst the body is failing the mind remains unaffected, able to track every incremental moment of loss and the inevitable descent into total dependence, with the moments of profound indignity which become inevitable.
In many ways neither Richard nor Karina initially came across as particularly likeable characters but, in so many ways, this is why the story is so powerful and convincingly credible. As the story is told from their alternating perspectives, you gradually become aware of the intense complexity of their relationship, their thoughts and old resentments, the excuses they make for their past choices and actions, their tendency to blame each other for all that went wrong in their relationship, their current ambivalent feelings as, for different reasons, they find themselves imprisoned by the inter-dependence they are now being forced to negotiate. The fact that the author didn’t in any way romanticise their current relationship, which was so often full of mutual hostility and resentment, but instead demonstrated that, in spite of this, they attempted to find ways to let go of old patterns, to forgive each other and, ultimately, to build bridges, was an impressive demonstration of her understanding of human psychology.
Equally impressive was the way in which she explored the effects of a debilitating illness on everyone involved with the sufferer and the relentless nature of being a full-time carer. How do you show caring and compassion when there are moments when you almost hate the person for making these demands on you? It is all too easy to see how resentment and anger can tip over into abuse. I thought that the relationship with daughter Grace was sympathetically told and was a reminder that each and every member of a family is affected by the diagnosis of a life-changing disease. The role of external care-givers brings its own dynamics and, yet again, these were dealt with in a sensitive and credible way. Bill, one of Richard’s earliest carers and also his most loyal, was a delight and I ended up feeling that every family struggling in this way should have the support of a person like Bill!
There were times when it felt almost too painful to continue reading this story because the author, in almost forensic detail, evoked such an acute awareness of the range of losses a person with this disease faces. The description of Richard, now being fed by a tube into his stomach, reflecting on the memory of what food used to taste like and its different textures, of his memories of being able to enjoy the layers of complexity in a glass of good wine, really captured just one of the incidental losses which resulted and gave me an insight which I had never previously considered. In fact, it is this educational aspect of Lisa Genova’s writing which is one of the reasons I appreciate her novels; I feel that I learn a lot and yet don’t feel that I am being “preached” at.
In conclusion, although there are moments when this is a profoundly sad and distressing read, it is full of empathy and one which explores second chances, forgiveness, redemption, courage and the power of love so, whilst it at times made me cry, it also reminded me of the amazing resilience of human beings. The nature of all the themes covered would make this novel an ideal choice for reading groups.
My thanks to Readers First and Allen and Unwin for a copy of this book in exchange for an honest review.