The relentless stress and the joy of being a carer, by the wife of a diplomat

Donna Thomson

Donna Thomson is the wife of the Canadian High Commissioner in London and the mother of a son profoundly disabled with cerebral palsy. The Four Walls of my Freedom, the book she has written about the experience of being his carer, is both an account of looking after a child in pain and a meditation on what it means to lead a good life. Thomson has avoided writing either a misery memoir or a book that would speak only to the disability community; this is a book that has something to tell us all.

I happen to have met Thomson, and she is everything you would expect of a high-ranking diplomat’s wife: poised, elegant, attractive, charming. She is also full of fun, fairly bursting with life and excitement and enthusiasm. She is not careworn or cast down – and yet, reading her book, it is hard to square the woman you see with the one who has had to put up with so much; hard to see how she has avoided being overwhelmed.

Nicholas at the age of one with his father

She is rather slow to describe the extent of Nicholas’s disabilities in the book, perhaps because Nicholas himself doesn’t really recognise himself as disabled. He has, though, spent his life in a wheelchair and is now, at the age of 21, largely confined to bed. He has very limited use of his limbs and is partially blind. He is reliant on technology to breathe, sleep and speak, and is fed by a tube into his stomach, using an electric pump.

He has endured great pain – Thomson describes periods of life when she or her husband had to get up every 45 minutes through the night to reposition him – and has nearly died several times. He needs someone with him all night, because he can stop breathing when he falls asleep.

When his condition was diagnosed, at the age of three months, Thomson describes feeling determined. She’d known there was something wrong: he’d cried all the time, and twisted his body into distracted shapes and failed to suck. Now she knew what she had to do; she would be the best mother she possibly could, give him the best life he could possibly have.

It was a life derailed, though, as she admits; not the one she had planned for herself or for him. And it has been a slog. ‘Like anyone who has tried to protect the integrity of a loved one with a nasty chronic condition, my life with Nicholas has been infused by a desperate love,’ she writes. This is extreme mothering, and it has made her think hard about the value of Nicholas’s life, and what freedom has been left to her as a carer.

Thomson has come to understand Nicholas’s life through of the writing of the philosopher Amartya Sen, who has argued that true poverty isn’t to do with money so much as a denial of capabilities. What matters for Nicholas is to lead a life that is full, interesting and exciting in his terms, and what has mattered for her is to be able to help him do that. Today he buys and sells on eBay, watches sport on television, plays games on the computer and has rich interraction with his carers and friends.

She has never, she says, met a parent of a disabled child who saw their child as tragic; such children are adored for being their essential selves. She reflects that the ability to think and reason has been considered by some to be the foundation of human dignity; for her, human dignity has more to do with the ability to inspire and receive love and care.

Nicholas has also forced her to consider the obligations of the state to carers: is it right that some people should be forced into conditions that amount to slavery? How is the state to reward and recognise the contribution to society that they make? Why is the public value of caring so low when to do it well calls for exhausting levels of alertness and emotional responsiveness?

This is a thought-provoking and powerful book. Its themes – of the value of the individual who does not and will never ‘contribute’ in conventional terms, of the exploitation by society at large of the caring ‘work-that-is-not-work’ to keep down budgets, and of the need to include the less able in community life in a way that doesn’t bankrupt or exhaust families – are central to an ageing society.

‘Now that Nicholas has survived to the ripe old age of twenty-one,’ Thomson writes, ‘we look for belonging in small spaces – Nicholas’s bedroom will do fine.’ In a world in which we are consistently encouraged to assert ourselves, it is this ability of Thomson and her family to find meaning and happiness that is inspiring and impressive.

Thomson’s motivation in writing the book was to raise questions about what we owe to those whose options are restricted and those who care for them. I am sure that having had a privileged existence, in a beautiful house, with enough money, has helped enormously. Nicholas has been lucky enough to live in Canada and Britain, where there is help from the state; his parents are fortunate to have been able to take out savings plans for his future and to be able to plug any gaps. Yet the feeling you are left with at the end of the book is amazement that Thomson has retained not only her identity, but a personality that is bursting with life and enthusiasm.

‘It is a strange paradox,’ Thomson reflects, ‘that in order to be free, the mother of a child with severe disabilities in our society has to relinquish the choosing self. I can remember thinking more than once, Okay, I give up. I give up imagining that I have a life. I am a servant, not a master. I will be still. I will watch and wait for Nicholas’s next crisis.’ In a society in which caring is so often a lonely, isolating and traumatic calling, Thomson is proof that it doesn’t have to be soul-destroying. But the questions she raises about how we could arrange things better make demands of all of us.

I have interviewed Donna Thomson for The Times: you can read the article here.

The Four Walls of my Freedom is published on September 1 by McArthur and Co.