The other week I was browsing in a bookshop and picked up We Are Not Ourselves as I hadn’t read a novel for a while. However, the cover blurb’s description of it as a detailed account of living with Alzheimer’s Disease suggested it would probably be a bit of a depressing slog of a book to read during my commute so I put it down again. Nothing else caught my fancy, but as we were leaving, I saw that Mrs B had bought a copy and so I gave it a second chance. I’m glad I did as it is a fantastic book and, after Terry Pratchett’s death today and a report on local TV in Yorkshire yesterday of a man in the early stages of early-onset dementia doing a long-distance bike ride to raise money into research into the condition, a topical one.
The book tells the story of Eileen Tumulty, the daughter of hard-drinking Irish immigrants to New York from the 1950s through to the present day. Growing up in a degree of poverty and having to grow up fast to manage the failings, emotional and material, of her parents, she becomes a nurse and rises into senior management, conscious of the opportunities denied her but determined to escape the deprivations of her childhood and to own her own home in a nice area and for her children to be able to go to the colleges that would let them into the more elevated professions. She dreams of shedding her Irish surname by marriage to someone more American and less encumbered with their “old country”. Yet, she meets and falls in love with Ed Leary, a neuroscientist from a similarly Irish background but whose parents, three generations into their time in the USA still hadn’t bought a home.
Ed is a serious and intellectual man, at odds with the materialistic culture of America and at times, Eileen.There’s a scene of the two of them early in their marriage going to see the window displays at Christmas at the department stores on 5th Avenue which Eileen finds magical as a symbol of a world of luxury, the nearest to which she got as a child was her mother working in one of the department stores only to return home gradually descending to drunken dereliction. Ed spoils it for her by railing against consumerism in an earnest tirade. His research is a success and his academic career flourishes to the point where he is offered a lucrative job with his own lab at a pharmaceutical company, holding out the prospect for Eileen of the life she dreamed of in suburbia. Which Ed dashes with his idealism by rejecting. Again, some years later he is offered the job of Dean of his faculty, but rejects it to focus on providing the best teaching for his students.
Over the next few years Eileen sees Ed as becoming crankier and meaner, less caring of her dreams, but all of a piece with the idealistic stubbornness that she’s always known and loved in him. It is only later, when she looks at his behaviour over a longer period through her nursing eyes that she worries for his health and gets him to be checked by her doctor. He’s then referred to a specialist who diagnoses Alzheimers when Ed is 43. The shock here is that he is not shocked and there’s a realisation that the crankiness and his obsessive sticking to routine and not making changes like taking other jobs were likely to have been Ed’s own ways of self-treating a condition which he was scientifically trained to identify.
This is part of the genius of the book and the reason why the jacket blurb was unhelpful. The main account of Ed’s Alzheimer’s is, in my opinion, the perhaps decade with which he is living with it without anybody else knowing or suspecting it. It is harrowing, but in retrospect. Even knowing that is a major part of the plot, the pre-diagnosis section reads as just part of the story of Eileen and Ed’s lives. Most of the remaining third of the book goes through the rapidly accelerating decline of Ed’s faculties and Eileen’s ability to care for him. Having to juggle all this with the minutiae of ensuring that they maintain sufficient medical insurance cover to care for Ed also, for an English reader, reminds us of the benefit of the NHS. Interestingly the shift from Ed’s illness being private to him to being something known by others is accompanied by an almost imperceptible shift from looking at the events from Eileen’s perspective to that of her son, Connell, who by that time is in High School and is just about to graduate when finally Ed dies.
Looking back on the book, for me, it is not so much about Alzheimer’s and its inexorable decline to death but about life. The lives of Eileen, her parents, Ed, Connell, their neighbours and friends. I don’t cry often, but had to fight the urge while on the train towards the end of the book as Connell, a year after Ed’s death, reads a letter written to him by Ed while he still had the capacity to do so about being his father and what fatherhood meant to him. I hope never to have to write anything similar for OMB but also hope that if I did I could do it with similar love, dignity and eloquence. It is a great and important achievement in a book nominally “about” early onset Alzheimers for it to be most affecting as an account of people and their relationships. It reminds us that Ed is the man who Eileen loved (and who loved her) and the father who loved Connell, and not just the container for a terrible disease.