So I have finished two really good reads in the last three days. Infact, I think one of them was quite the most remarkable novel I have read in a long time. Lisa Genova's Still Alice is the story of a Havard professor of cognitive psychology and linguistics who discovers she has early onset Alzheimer's Disease, aged fifty. The novel is a quite brilliant evocation of the slow progress into forgetfulness and disorientation which detatches her from her career (which is at its height), her support networks, her family and even heself. Yet it is not unremittingly depressing. As well as giving the reader some insight into the fear and the increasing sense of confusion felt by those who suffer from dementia, it shows how relationships can continue to change and even to blossom through the early stages of the disease. Alice, the central character, finds that she can increasingly communicate most profoundly with the daughter she has never before got on with. The reason they have continually argued is that Alice is an academic who is intellectually ambitious for her daughter while Lydia, the daughter, wants more than anything to be an actor and is impatient with the notion of studying, theoretically, what she can do in practice. As Alice's grasp on complexity diminishes and her ability to read begins to desert her, she and her daughter find that they can communicate through talking about how character and emotion are developed in the plays her daughter is in. A long time ago, a geriatrician I knew whose mother had dementia advised me that mood was they key to communication with dementia sufferers. The content of conversations becomes less and less important while picking up on mood and atmosphere and either joining in or purposefully changing them becomes the key to conversation. Alice becomes expert at picking up the atmosphere of an exchange and uses this ability to encourage Lydia as she studies her parts.
The book is choc full of tiny insights into the impact of Alzheimers on both the sufferer and their family but it is written unapologetically entirely from the view point of the person living with the disease. There is humour and hope and a sense that life changes but remains precious as the disease progresses. Probably one of the most chilling aspects of the book is the way it depicts how dementia sufferers become invisible and voiceless. From the colleagues who ingnore her and become embarrassed in her presence early on, to the doctors and family members who discuss her in her hearing later on, and the social worker who is funded to run a support group for care-givers but not for the sufferers themselves, the reader catches a glimpse of what it is like to begin to disappear. Alice manages to capitalize on the transition period where she has the disease but retains some insight and comunication skills in order to deliver a speech at a conference on Dementia showing what the disease is like for the sufferer. I suspect that few sufferers who had not been former university professors would have the support structures to make this kind of thing possible. The poignancy of her achievement in doing this is that she will only remember the contribution she has made and the feeling of restored confidence it has given her for the duration of the day on which it happened.
The second excellent read I have enjoyed is Juliet Barker's The Brontes which is a biography of the whole family. Barker's thesis is that the individual Brontes can only be understood when studied in the context of the whole family unit and she has used previously untapped sources to provide a more rounded and (in Mr Bronte and Branwell's cases, a more sympathetic) protrait of family members than the usual hagiography of Charlotte, Emily and Anne at the expense of others in their tight knit circle. She also gives some very interesting insights into the vicinity of Haworth and Bradford in the early to mid nineteenth century and the life and work of a conscientious parish priest in the north of England. Patrick Bronte was extremely faithful in his care of his parishioners throughout his own repeated bereavements and personal worries and it is interesting to read the unexpectedly liberal and far sighted views he held on many social issues. He remained, to the end of his life, a true evangelical yet he accommodated the various theological and spiritual outlooks of his own family with realism and compassion. I had not previously grasped the extent to which Emily lived almost entirely in her own world without demonstrating much empathy for those around her. Home bird she might have been, but this was more about home giving her the space to be independently and unashamedly herself than about concern or sympathy for the others. Charlotte did her (and us) a dreadful disservice in destroying her second novel or the parts of it she left. Charlotte could be amazingly negative and critical of those around her and one wonders whether she over estimated the degree to which Emily's work would have added to mid Victorian prudishness and distaste over the Bronte legacy. Well worth a read, whether you are familiar with the Brontes or not.
|The Churchyard at Haworth|
Still Alice Lisa Genova, Simon and Schuster UK Ltd 2009
The Brontes Juliet Barker, Abacus 2010 (first published in the UK by Weidenfield & Nicholson 2004)
Both on Amazon