Authors: Cindy Weinstein and Bruce L. Miller
This rather ambitious book successfully brought together diverse elements of a peculiar neurological disorder. Set in the context of a daughter’s anguish, the book captures the lived experience of a specific form of Alzheimer’s disease, a disorder she characterised as ‘often a litmus test for our humanity‘. Just as it explores the scientific frontiers of the debilitating neurodegenerative disease, the book is also a journey of discovery for the first author who, on one hand was seeking some sort of absolution for the guilt of being absent through most of her father’s terminal illness, and on the other was searching for comfort in literature. Acknowledging that ‘some of my difficulty stemmed from the fact that truth and fiction were in a knot that I couldn’t untangle’, she maintains that writing a book was the best way she knew of how to say goodbye to her father, and ‘my best shot at making sense of the road I was on…where fiction and reality merged, switched places, illuminated things, shrouded others’. And as she oscillated between confessions and justifications, trying to find ‘solace through learning and sharing words‘, the author also had an altruistic objective for writing the book – a strong desire to help others ‘dealing with the emotional pain of Alzheimer’s disease’. And in doing this, she drew from ‘several worlds’ including neurology, literature, pop culture and her Jewish roots (page ix, xi, 8, 58, 60 and 99).
Language was literally and symbolically at the core of this illness narrative which contrasts literature with an illness that strips its victims of their expressive skills. The author, a professor of English and a literary critic, noted that the first thing’ her father lost was words, explaining that whilst he knew the meaning of the words he wanted to use, ‘he could not access them’. The story illustrated the different ways this loss manifested, such as with errors in spelling and difficulty writing letters. She also demonstrated his word finding difficulty with specific anecdotes, such as when she said ‘he wanted something very specific in his salad but couldn’t remember what it was’, and it was only after they had spent a frustratingly long time in the shop that his ‘face lit up’ when they came across croutons. It was undoubtedly her love of literature that made his gradual loss of language the most distressing of his symptoms for her to accept. For example, she said she felt like dying ‘when words kept slipping through his fingers’, metaphorically likening this to ‘a torture technique straight out of Greek mythology, like Prometheus getting his liver eaten by a vulture‘. She also resorted to mythology to symbolise her father’s struggle with words when she compared his language difficulty to a Sysiphain task, saying that in his case, ‘the boulder was a word’, and, like Sisyphus, ‘at a certain point…he would push and not get the word’ (page 40-45 and 60-62).
Beyond difficulties with language, the author also explored the other crippling symptoms her father experienced. Amongst the most distressing of these which she narrated were forgetting who his wife was; not remembering how to use a knife; not knowing ‘that pouring syrup on pancakes requires that he open the piece of plastic so the syrup will come out’; and ‘positioning himself in the exact wrong direction‘ when playing golf with his friends – a manifestation of ‘losing his spatial skills‘. But a symptom that stood out for its peculiarity is what the author called ‘the loss of identity that took strangely material forms’; because ‘he couldn’t recognize himself’, the author explained that he was ‘constantly’ going through the identity materials in his wallet ‘as if trying to find himself in the documents that named him’ – but because ‘the reference was under attack’, she said he ‘couldn’t figure out‘ what the documents meant. As he serially lost ‘an aspect of himself’ in the latter stages of his illness, her father also experienced a range of heartbreaking behavioural symptoms which included depression, anxiety, sleep disruption, disinhibition, agitation, irritability, delusions, and hallucinations (pages 2, 42-43, 60, 80-81, 85-87 and 133).
The diagnosis at the centre of the narrative is the language or logopenic variant of early onset Alzheimer’s disease, also rather confusingly called the logopenic variant of primary progressive aphasia. The co-author, a neurologist and fellow bibliophile, provided a comprehensive commentary of the disease in a narrative that carefully described the clinical and pathological features of the disorder, and expertly distinguished it from the other neurodegenerative diseases that causes prominent loss of words – frontotemporal dementia and the nonfluent and semantic variants of primary progressive aphasia. The account also acknowledged the scientists who contributed to the understanding of Alzheimer’s disease, from Alois Alzheimer and Oskar Fischer to Frank Benson and Jeffrey Cummings. He also singled out Marilu Gurno Tempini for being the first to describe logopenic aphasia, a syndrome which manifests with the loss of the ability to name (anomia), to read (alexia), and to write (agraphia). In his wider assessment of the importance of words, the co-author asserted that ‘no domain in the brain garners as much respect as language’, emphasising that it is the driver for our ‘uniquely human capacities‘ of speaking, reading, and writing’. He also highlighted the importance of reading in the prevention of Alzheimer’s disease; pointing out that people with limited education have smaller hippocampi, he stressed that non-readers like the first author’s father are more likely to manifest Alzheimer’s disease with early language problems (pages 22-32 and 63-73).
The author’s lingering grief, and the emotional pain that accompanied it, were at the heart of this book which documents her desperate attempts to complete the mourning process for her father. This was evident, for example, when she said that ‘for years, my father’s death has beckoned me, requiring a reckoning, which is undertaken in this book’. It is surprising that it took her more than twenty years after his death ‘to muster the strength to return to the years of his dying and not look away from the wreckage‘. One explanation for this may have been the remorse she felt for ‘the years spent not being there‘ to care for him, the reason she ‘had such a secondary relation‘ to his illness. However, a more important factor was her need to understand the disease that took her father away, what she saw as a prerequisite for recovering ‘from some of the pain of watching my beloved father become unglued‘. And writing the book along with a neurologist versed in the disease was her way of understanding ‘what was happening to my father thirty years ago’. She said this helped her to ‘climb over the wall of a disease that kills memory‘, and it enabled her to access the good memories of her pre-morbid father – memories she had ‘buried’ like precious treasures because the trauma of losing him made her both unable and unwilling ‘to remember what I had lost‘. Indeed it was only with the better understanding of the disease that she could recollect and paint a vivid biographical portrait of her father before his illness struck. She also maintained that understanding the disease enabled her to excuse many of his disruptive symptoms, such as when she rationalised his fits of rage by viewing it in the context of how his loss of words to speak of his pain made the pain worse (page xi, xii, 42, 35, 55 and 134-135).
The intersection of medicine and literature was a uniting theme of this book whose title reflects the confluence of the two subjects – ‘finding the right words‘ being a chronicle of an illness in which searching for lost words is central. The author explored this convergence in many ways, for example when she compared ‘the language of literature’, in which ‘the order of events makes up the plot’, and ‘the language of medicine’, in which ‘the order of symptoms creates a plot of the disease’. The comparison was also evident when she contrasted the ambiguity of her reaction to her father’s symptoms, which she just wanted to ‘go away‘, with the ambiguity inherent in literature, which she always wants to clarify. And in an inspired commentary full of symbolism, the author explored the links between her particular situation and the scenarios of several novels, particularly those of Herman Melville. For example, she referred to the protagonist in Bartleby as ‘the character who comes closest to capturing what my state of mind has been for all these years’. But it was to Moby Dick that she ‘kept returning‘ during her father’s illness and after his death because it is ‘probably most interested in and successful at demonstrating language’s breadth and beauty‘. Of the several intriguing lessons she extracted from the novel, her reference to the ‘conflict’ between Ahab’s ‘penchant for allegorical certainty‘, and Ishmael’s ’embrace of symbolic potentiality‘, was perhaps the most relevant to her circumstances. It is interesting that she changed her ‘interpretive radar‘ after her father’s diagnosis, and replaced her sympathy for Ishmael with an understanding of Ahab’s pain and ‘insatiable desire for revenge‘. Like Ahab, she explained that ‘someone had taken something, someone very close to me, and I was angrier and sadder than I had ever been in my life’ (pages xvi, 36, 43, 46-48, 50-52 and 83).
This is perhaps the quintessential multi-thematic book which comprehensively but concisely does justice to all the objectives it set for itself. A connecting theme to the diverse threads of the book appear to be the nature and the resolution of the author’s distress, a conundrum that arose from her inability to come to terms with her father losing that which she holds dearest – language. Although the author did not witness her father’s full illness, she managed to provide a sufficiently detailed portrait of his progression from health to disability, and the impact this had on her and her family. The intertwining narrative of the two authors also helped to bring together what would otherwise have been a disjointed account. The dual approach also ensured that the main themes of the book – the academic, the illness, and literature – got a balanced coverage. The tendency for the author to ramble, a trait she acknowledged, seemed aggravating at times, but it gave the text a certain authenticity and a rather intriguing unpredictability.
This is indeed a book to approach without any preconceptions of what an illness narrative should be. The content demonstrates how the worlds of reality and fiction interact to reflect the contrasting ramifications of a devastating illness. Whilst the stated motive for writing the book revolves around resolving emotional concerns, it does so on the background of a most enlightening scientific elucidation of the disease at the heart of the memoir, and an equally masterful exploration of the literature around words. The book’s clear portrayal of the manifestations of a relatively poorly known form of Alzheimer’s disease, its documentation of the established certainties of the disease, and its definition of the boundaries of the different forms of dementia, are equally helpful for lay people, general doctors, and neurologists. The book’s free-flowing and unrestrained narrative, and its human angle chronicle, are refreshing, and I recommend it to all doctors.
Publisher, Place, Year: Johns Hopkins University Press, Baltimore, 2021
Number of chapters: 5
Number of pages: 192
Star rating: 5