We Are Not Ourselves was one of the very first Dementia narratives I encountered and it remains one of the best examples of writing about Dementia I’ve come across in any novel. It is an epic saga, in the old-fashioned sense; a novel which follows an American couple, Eileen and Ed Leary from childhood, through courtship and marriage to the establishment of their own family. It’s very much a rags to riches, boy meets girl, American dream story and the plot arc is incredibly familiar until around half way through the book. In his early fifties, Ed’s behaviour starts to become increasingly erratic. Eileen is concerned about her husband and eventually convinces him to see a doctor. “If nothing’s wrong with him,” she tells her own doctor, “I’m going to divorce him. I can’t take it anymore.”
Eventually Ed is diagnosed with early onset Alzheimer’s. The news turns the Leary’s world upside down, but Eileen insists from the outset, “we are going to carry this with dignity and grace.” This is a novel about a family who stick together through good times and desperately difficult times. It’s also a novel about how a life change as radical and disruptive as a Dementia diagnosis can turn cosy notions of the American dream upside down. Eileen manages to get her husband included in a clinical drug trial and even fantasises that the drugs he’s given might return him to his old, ‘normal’ self. However, in reality, she knows it doesn’t work like this with Dementia,
“His real self wasn’t hiding in there waiting to be sprung for a day of freedom. This was his real self now.”
We Are Not Ourselves excels beyond other Dementia narratives in its handling of the specifics associated with an early onset diagnosis. Thomas explores family dynamics: Ed’s reluctance to tell his son, Connell about his illness and his fear that the condition might be hereditary. He takes a close look at the Leary’s marriage, as the role of provider quickly shifts. There’s also an incredible amount of realistic detail around the financial support available for people living with Dementia in the USA. At one point Eileen is encouraged to divorce her own husband as this would classify as eligible for financial assistance. The novel also refuses to shy away from the upsetting, and very realistic depiction, of a youngish man with Dementia attempting to retain his job, his status, salary and dignity for as long as he can, whilst the illness makes this more and more difficult to do. Thomas works in issues around class, finances and societal shame, raising big questions about where, if anywhere, Dementia fits into American society with its notions of personal and familial success.
There’s a section towards the end of this novel where Connell, as a young man, steps up to become one of his father’s carers and it remains the most straightforward but powerful piece of writing about Dementia I’ve ever read. This section stayed with me long after I’d finished the novel and still comes to mind from time to time. Thomas writes so well about the complex shift in relationship between parent and child as responsibility for physical and emotional support moves from the father to the son. There’s no excess of emotion or sentiment here, just beautiful, honest, matter-of-fact writing about how difficult it is to feed and change your own adult father, and also what a strange privilege this is.
At almost 600 pages, We Are Not Ourselves is a reasonably long read, but it’s the sort of novel which draws you in. Thomas introduces his readers to the Learys slowly, ushering us into their home, their family and, ultimately, their problems so that, by the final few chapters, we feel part of the family, fully able to empathise with their joys and their pains.
We Are Not Ourselves was published by Fourth Estate in 2015