Non-fiction – hardcover; Picador; 243 pages; 2015.
Imagine someone you loved was lying in a coma or was in a permanent vegetative state and that there was no hope of them ever recovering; they would spend the rest of their life unable to move their limbs, go to the toilet unaided or communicate, and either you, or the state, would need to look after them around the clock.
What would you do? Give up hope? Trust that the health authorities could provide the care and support your loved one needed — and that you could afford to pay for that care? Bring them home and look after them yourself? Or go to the courts and seek legal permission to withdraw their treatment so that they could die with dignity?
For Cathy Rentzenbrink and her parents this hypothetical situation became a reality when Cathy’s younger brother was knocked over by a hit-and-run driver while he was walking home late one night in 1990. Matty suffered a serious brain injury and never recovered. He was 16 and just weeks away from finding out his GCSE results, which would put him at the top of his class.
In The Last Act of Love — subtitled The Story of My Brother and His Sister — Cathy looks back on that single shocking event and reflects on how it shaped the rest of her life and the life of the brother she loved so much. She traces the heartache of willing her brother to survive and then realising, years later, that it would have been easier for everyone if he had died.
What strikes me now as it never has before is that I can’t say my prayers went unanswered. I was given what I asked for. My brother did not die. But I did not know then that I was praying for the wrong thing. I did not know then that there is a world between the certainties of life and death, that it is not simply a case of one or the other, and that there are many and varied fates worse than death.
Eight years of care
For eight years, Matty’s parents looked after him at home while running a busy pub in Yorkshire. The task was exhausting because he required round-the-clock care. Eventually, after many years, something had to give.
The kindest thing — the “last act of love”, as his mother so eloquently put it — was to seek legal permission to withdraw treatment so that Matty could die with dignity. The case made legal history as it was the first ever to be taken by the family rather than the health authority.
Permission was granted, but it took 13 days for Matty to die after his nutrition and fluids were withdrawn. Cathy, expecting to feel relief, found herself “full of a swirling and incomprehensible anguish I’d never anticipated”. Much of the rest of the book charts the outfall on her personal life and her struggle to adjust to a new life without her brother.
The bravest book
This incredibly moving memoir is possibly the bravest book I’ve read. I gulped it down in a day while I was sick in bed, and I’m not embarrassed to admit that the box of tissues by my side came in useful for more than just my horrendous cold.
It’s a sad book, but, strangely, it’s also a happy one. It’s heartfelt, compassionate and emotionally rending, yet it’s also uplifting and brims with a quiet optimism. These contradictions, I suspect, are what make it such a powerful and compelling read.
It also helps that Cathy writes so eloquently and so honestly. There’s a lot of pain, anger and confusion here, of a young woman struggling to find her own identity, not quite realising that it is tied to her brother’s tragic accident and never knowing at what point, if any, to tell people about Matty.
The Last Act of Love brings up many issues relating to grief, loss, love and family, as well as the ethical dilemmas that modern medical intervention has created. Anyone with a heart should read it.
For those that have already read The Last Act of Love, can I recommend Akhil Sharma’s award-winning novel Family Life? This is a fictionalised account of something that happened to Akhil’s family: his older brother was left in a permanent vegetative state after he hit his head in a tragic diving accident.
Reading Matters 
You are recommending some difficult books here. I hope my family does not keep me on life support (I really must write a living will!) and my father, who had a stroke, certainly hoped that the dying bit didn’t take too long – it took a while, and I was pleased for him when it was over. Doesn’t bear thinking about, it happening to a child or grandchild. Perhaps we need stories like this to remind us to let them go.
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The one message I took from this book, Bill, is that sometimes there are fates worse than death. As much as we may will/pray for our loved ones to survive accidents/medical emergencies, sometimes it’s not for the best. And as medicine/technology gets better and better at “saving” people these ethical dilemmas will continue to force families to make uncomfortable decisions.
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I’ve read both books and found them very moving – both written from the remaining sibling’s PoV. Hearing Cathy R talk last year at the Wellcome bloggers event was amazing – she has a brave sense of humour.
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This was a high impact book for me – my brother died suddenly when he was 30 and while it was (and still is) incredibly tragic, I felt almost blessed after reading this book that his death was sudden. My brother could have easily ended up in a PVT and that really would have been devastating. Yes, it was a very brave book – it made my top ten of books read last year.
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Oh Sharon, I didn’t know this. How terrible for you and your family. I heard Cathy speak about this book at the Chiswick Book Festival in 2015 and she said so many people had told her that reading her book made them realise the untimely death of a loved one had been a blessing they hadn’t truly recognised until they’d come across Cathy’s story.
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Yes, the line you quoted is so true – there are worse things than death, it takes a book like this to make you realise that. So brave of Cathy and her family – both fir the decisions they made and for writing the book.
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