I’ve been consciously shying away from books and films with the subject of Alzheimer’s since the end of last Summer, when my father passed away from the disease. Whether it was selfish or self preservation I’m not sure because before that moment I had greedily read everything I could on the subject in an effort to understand what was happening. I read non fiction such as Where Do Memories Go: Why Dementia Changes Everything by Sally Magnusson, novels such as Samantha Harvey’s The Wilderness and Emma Healey’s Elizabeth is Missing. The disease took him on a long, slow, inexorable descent, horrible to witness, so I opted to try and forget.
With all the publicity surrounding the film Still Alice, crowned by Julianne Moore’s Oscar win on Sunday (an actor I have long admired) I felt ready to read the book upon which the film is based.
Still Alice, by author Lisa Genova, is the story of Dr Alice Howland, a well liked and respected Harvard professor who has a doctorate in psychology, with specific expertise in linguistics. She loves her job; her identity is bound up in it. Coupled with this she has a husband, John, who has an equally demanding career, and three grown up children. One day, during a lecture with the audience waiting expectantly, she is totally flummoxed when she cannot think of a particular word.
A few more instances of unsettling memory lapses occur but still she puts it down to stress, being busy, to possible menopausal symptoms or lack of sleep.
Next, more frightening, is when she is out for her usual run, in a place not a mile from her home where she runs every day and in a place where she has lived for twenty five years, she suddenly has no idea where she is. It is not so much she is lost, as she feels totally disoriented. Like a panic attack, this sense of uneasy disconnected dread is described so well.
After a complete and through series of MRIs and tests and assessments (which Genova says in the author’s notes that she truncated out of necessity otherwise the book would have run to many more pages) she is given the totally shattering diagnosis of early onset Alzheimer’s. She is just fifty years old.
At first she cannot believe it and rages and rails against it, keeping it secret from her colleagues. (They begin to think she has a substance abuse problem). She experiences a sense of shame and growing isolation. In an affecting scene, which brought back vivid personal memories, she visits a dementia unit which is likely to be her future. There is no one at all her age. She tries to find a support group but there is nothing for people with early on-set Alzheimer’s sufferers, so she sets one up herself.
There are some blackly comic episodes where Alice ransacks the entire house, even reduced to spilling and rummaging through the contents of a bin on the floor, looking for something – only she cannot remember what it is she is looking for, or find the noun to tell her husband what it is, and another where she surprises her neighbour by appearing in her kitchen, thinking it is her own.
The spark for the idea for the book came from Genova’s grandmother who had Alzheimer’s in her eighties but it made her think what it would be like to actually know you had it – before the disease really takes hold, when you are still able to understand, or have periods of lucidity. The real strength in the book is remaining with Alice’s viewpoint. We are always in her head. She is perhaps the ultimate unreliable narrator. Her doctor gives her a series of questions to answer ; where does she live, how many children does she have etc. It is the reader who sees she can no longer answer them, when she calls her daughter ‘the actress’ instead of by her name, Lydia, when she can hear conversations going on around her but only loosely realise they are about her.
Actual people who are going through this have vouched for its veracity – surely the highest compliment there is. People with early on-set Alzheimer’s are nowhere to be seen in the media or discussion, and Genova says she wanted to give this invisible group a voice. I came away with a renewed sense of the importance to treat people living with dementia with care and sensitivity – that they are not a bunch of symptoms, to be hidden away in care homes. Its message is that whatever ravages the disease takes on the brain, that the essence of the person – their soul, their spirit, their ‘me – ness’ – whatever you want to call it – remains intact.
Although Still Alice was unbearably bleakly sad, it was also life affirming. When everything is systematically stripped away, what is left is her emotional connections with her family. What remains is love.
I know I will see the film and cry for the fictional Alice, for all the real ‘Alice’s, for all the families going through it, for my Dad.
Shining a light on it can only help.
Thanks to Simon and Schuster UK for my review copy.