Time; a whole life ahead; expectations; milestones and achievements; a future. Those are some of the things we anticipate when we become parents - we look forward to seeing our child grow and develop, gain independence, follow their unique path. For Emily Rapp and her husband, time stopped when, at nine months old, their son Ronan was diagnosed with the rare and always fatal degenerative disorder Tay-Sachs disease. In her memoir The Still Point of the Turning World: A Mother's Story
As you would expect, this is a highly individual and introspective book, and written as it is by someone with a background in theology, it looks at grief and loss from a philosophical perspective as Emily tries to make sense of her changed reality through examining belief systems and reading the work of writers such as C.S. Lewis and Thomas Mann, Hegel and Mary Shelley. But of course, she cannot ever make 'sense' of a situation which would see her child regress instead of progress as normal development stalls and decline begins, one which would mean that he was living increasingly in a closed inner world, and which would see him die before his third birthday.
"It is a unique and terrible privilege to witness the entire arc of a life, to see it through from inception to its end. But it is also an opportunity to love without a net, without the future, without the past, but right now."
Emily's book ends before Ronan's passing. Its focus is not just on learning how to live with death but also on learning how to live, how to be - in Eliot's phrase - at the still point of the turning world. It looks at healing and considers what it means to be 'healthy', to be 'well' (Emily herself was born with a congenital defect which resulted in the amputation of her leg when she was four); it examines grief, and here she looks to Lewis and his robust response to his own grief at the loss of his wife, one of faith and intelligence - "a pairing that feels wholly unexpected, a colourful weasel popping out of an ordinary cardboard box" - and which among other things maps the limits of empathy.
The writing here is raw and painful as also considered and reflective. Emily is fierce and brave, beaten and drained, indomitable and raging, accepting and unflinching. It is not a conventional picture of a response to illness and premature death, but one which looks beyond the personal to whatever bigger picture might provide an answer of sorts, a means of understanding the torment inherent in the questions 'why?' and 'how?' and 'what now?'.
