“We read to know we’re not alone.” If, like me, you sat in a darkened cinema in the early 1990s watching Shadowlands, all the while trying to stifle unrelenting tears, then you may remember this line.
Scriptwriter William Nicholson assured his own immortality when he attributed this quote to an errant student in his film about C.S. Lewis, the much-loved author of the Narnia children’s novels. But do you know what Nicholson was really thinking when he wrote that?
Shortly after the film came out, Nicholson said: “We read to know we’re not alone. That has been my own experience. It’s through books that people I’ve never met have reached out to me, saying, ‘This is what matters most to me. Does it matter to you too?’ This feeds something very different to the appetite for entertainment. It feeds, I suppose, the hunger for meaning.”
The sentiment is not dissimilar to Alan Bennett’s oft-quoted truism from his award-winning play, The History Boys. It’s a popular quote, repeated on bookmarks and across various National Theatre merchandise.
‘The best moments in reading are when you come across something – a thought, a feeling, a way of looking at things – which you had thought special and particular to you. Now here it is, set down by someone else, a person you have never met, someone even who is long dead. And it is as if a hand has come out and taken yours.’
As a voracious reader, I’ve always looked for that seam of recognition, the flash of shared experience. I found it as an 18-year-old in John Steinbeck’s East of Eden. And, a couple of years later, in the letters of John Keats. Since then, there have been books that I’ve loved, books that have moved me, and books I’ve urged others to buy. But it was 20 years before I found another book that I can truthfully say changed my life.
If I’m honest, I’d been putting off reading The Last Act of Love by Cathy Rentzenbrink. The reviews had been unanimous in their approbation, calling it ‘a life-affirming act of love’ and ‘a specific story about an unusual situation’. But that specific situation was one I was all too familiar with.
On November 4, 2011, my best friend Mary Bowers was crushed by a distracted lorry driver as she cycled to work. She was just a short distance from her East London office, on a route she travelled every day. Mary did everything right. She was correctly positioned in the cycle box, her bike had been serviced just two weeks previously, and she’d been waiting for the lights to change for at least ten seconds. The driver was at fault. He was on the phone and wasn’t paying attention, even though Mary was directly in front of him.
Four years on and Mary is in what is termed as a ‘minimally conscious’ state. She has severe brain damage and will require round-the-clock care for the rest of her life. Mary is 31. A journalist, when she was run over Mary had just graduated from The Times‘ two-year training scheme and had the rest of her life ahead of her. Today she cannot move, speak or smile. She is fed through a tube in her stomach. Visitors to the care home have no idea if she knows they are there, let alone if she recognises them. To say this is bleak is an understatement.
As someone who lost her brother in horrendous circumstances, Cathy Rentzenbrink knows what this feels like. In August 1990, Rentzenbrink’s 16-year-old brother Matty (her younger sibling by a year) was walking home from a disco along a country road in North Yorkshire when he was knocked down by a car. It was two and a half weeks before his GCSE results; two and a half weeks before he got the best results in his school.
On the night of the accident, Rentzenbrink was drifting off to sleep in her parents’ pub when she heard someone shouting in the car park. “Is this where Matthew Mintern lives?” A man was standing next to his car. “Yes. I’m his sister,” Rentzenbrink replied. “You’d better come then, he’s in trouble.”
Trouble. “It was a worrying word, but a small one,” writes Rentzenbrink in her book. When she found Matty he was lying in the road, his body covered with coats. “One of the [ambulance men] sliced through Matty’s T-shirt…The red letters of The The could no longer be made out as the whole T-shirt was soaked with blood.” Why is there so much blood, she asked? “It’s coming from the back of his head, lass.”
This was Rentzenbrink’s last normal day as a teenager. It was eight years before Matty was released from his permanent vegetative state when the family’s application to withdraw all life-sustaining measures was granted by the Royal Courts of Justice. When you read her book, there is no doubting the unremitting pain and horror of those years, no doubting the strength it took to say, ‘that’s enough’.
Since finishing The Last Act of Love, I’d thought about asking Rentzenbrink for an interview many times. Her searing honesty, her courage, and her experience which, in many ways, so closely mirrored my own, meant that I longed to talk to her. But I feared what that might mean. I was afraid to confront my innermost feelings about what had happened to Mary, and I hated the idea of approaching someone who’d suffered only to vomit out my own grief.
In the end, the decision was kind of made for me. Rentzenbrink was nominated for the Portico Prize, the North’s leading literary award. I loathe the expression that ‘it felt like a sign’ but I took it as such and got in touch.
It’s nerve-racking, talking to an author whose words have had such a powerful and profound effect. But Rentzenbrink put me immediately at my ease. Tentatively, I began by asking her if it was a difficult decision to write about what happened to her brother.
“Yes. I tried lots of times before and failed. And not only had I failed, it had made me feel worse. Then, when I was 34, I became obsessed with the idea that the accident was half my life away and I had another try. And that time, again, I couldn’t carry on writing it but I felt it had been a good thing to do and it was after that that I decided to have my son. I don’t think I really saw it at the time, that connection, but actually I do think it freed me up enough to feel that I could live a bit.”
Some of what Rentzenbrink had already written by this point is in the book you can buy today. At the time, she printed it all out, put it in a folder, and stored it in the loft at her parents’ house in Cornwall.
“I wrote something called ‘Why I stopped writing about Matthew’ and in that I just say that I couldn’t bear to go back and think about things like the eight years. It was the end of hope I couldn’t bear. I find it quite easy to talk about the accident itself, the night of the accident, even the first few months, because we still had hope. And the hardest thing for me is trying to pinpoint the gradual erosion of hope. And I still find that the most difficult thing.”
I catch my breath. The gradual erosion of hope. It’s a phrase I have said to myself many times. I can think of no better way to describe what’s it like to try and marry what is medically irrevocable with the indomitable human spirit, what it’s like to cling onto that small smudge of positivity while, at the same time, knowing that it’s being rubbed away.
“I don’t think you can. The thing that sums it up – you know that painting The Scream? I think to stand in front of someone who you love and see them in this really damaged state, I don’t think in a way there are words that can really explain that other than this scream, this terror. It’s dreadful. And I think that’s just so difficult to communicate.”
She’s right. Unless it’s happened to you, it’s impossible to understand what that limbo is like. One of the most impressive elements of Rentzenbrink’s book – and there are many – is right there on page three. She writes: “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 various fates worse than death.”
It’s a brave thing, to express that thought at the beginning of a book, to say, at the outset, that “it would have been so much better if Matty had died then”. To someone who has never gone through something like that, it may even seem callous. But I know that it takes years to come to that conclusion. And to say it out loud is perhaps the worst and the best thing you can ever say.
“What I mainly now think is, we’re just not equipped for this,” reflects Rentzenbrink. “Our brains and hearts and souls have not evolved for this. We’ve learnt to do all these fancy medical things but we’re not emotionally equipped for it. When the person has just been in the accident, all you want is for them to be alive. We’re not emotionally equipped to say, well, maybe it would have been better if they had died. It’s just a dreadful, dreadful situation.”
When you wrote the book, were you thinking that your readers might be people in the same position as you?
“When I was writing it, I never really thought that anyone would ever read it. I just thought I would write it down and put it in a drawer. But I felt that it was stopping me writing anything else. So I thought I would try to write some of it down and that would be good for me. And then gradually that changed. And I remember really quite late on in the process that I suddenly realised that actually, people will read this.”
She adds: “I’ve always been angry that books and films represent coma and brain damage so badly. But then it never really occurred to me before that actually I could put the other side of the story. And I didn’t set out with that intention. It accidentally happened. I feel that my book is an accidental antidote to all those films in which people just suddenly wake up.”
There’s a section in The Last Act of Love, fairly near the end, where Rentzenbrink is in therapy. She laughs at something inconsequential and immediately feels guilty: “How can I laugh? I thought. How can I laugh?”
With that in mind, how did it feel to finally write the book?
“It felt like I just sat down in front of my laptop and opened a vein and bled my pain onto the page. But that was in the writing, and the editing was very different. I realised that people would read this book not because they read a lot of books but because they needed to know more about this subject. And that changed the way that I edited it.”
By the time Rentzenbrink was ready to show her account to an agent, she’d amassed a considerable amount of experience in the publishing world. Initially a Christmas temp at Harrods, followed by work at six other shops including Hatchards, she eventually joined Waterstones and stayed there for ten years, including a role as publisher relationship manager. Today she is contributing editor at industry bible The Bookseller, and is project director at book industry charity, Quick Reads.
I imagine that this wealth of experience means that she edited her own book with an uncompromising eye.
“Yes. I moved it around a lot. It was all written in a different order. At one point there was a whole strand about what reading other books taught me about this. And then I took it all out because I thought that someone will read this who doesn’t really read books whose son is in a hospital in a vegetative state and that person doesn’t need to read me twatting on about Julian Barnes.”
Since publication earlier this year, Rentzenbrink has received lots of emails and letters from people whose loved ones are in a similar situation, including a number of bereaved siblings. Has it been difficult to hear these stories of loss and grief that, in many ways, echo her own?
“I think it’s very beautiful and I feel very honoured. It’s often really sad. Sometimes people send me letters and I just cry over them. The things I find saddest is where the relative or friend is still alive because often the people around the person don’t agree what should happen to them. I have managed to help someone by referring them to someone else who can help them. This woman said to me, I’ve learnt more in the past week since reading your book and with you telling me where to go for help than I’ve learnt in the last three years.”
Is there another book to be written in response to all this?
“Talking to therapists, I realised that one of the things that people in therapy do is separate the idea of the content from the process. So the content is the thing that happened and the process is how you try to get over it. Thinking like that, my first book is the content. I want to write a second book that is really more about the process. So a book about how this grenade has been lobbed into your life and that could be anything. No matter what that is, it’s grieving for your own, alternate future life. I miss and long for my brother but I’m also obsessed about what my life would have been like if what happened to him didn’t happen. And obviously what my life would have been like because he would have been in it, being amazing and cheering me up and telling me jokes all the time, but also what my life would have been like because I wouldn’t have been joyless and damaged.”
The new book will be called A Manual for Heartache and will come out in January 2017. Rentzenbrink explains how it will differ from The Last Act of Love.
“I want to write an easier book for people to read. The other reason I want to write this book is that loads of people have told me that they want to give my book to someone who’s suffering but they are scared that the content is too hard. And I completely understand that. But I wouldn’t have wanted it any other way. I wouldn’t have wanted to dilute the hard stuff in my book and make it more palatable to people. But actually now I find I do want to write a book with a primary purpose to comfort.”
In The Last Act of Love, Rentzenbrink lays bare a level of grief that many people will recognise, even if the specific circumstances of that sadness are different to their own. “People have said to me that it makes them feel that they’re not alone. When you have nothing else, when you’re distressed or depressed, the only thing that people can really give you is that you’re not alone.”
During the course of the book, Rentzenbrink talks about her parents and their shared experience. What was their reaction after it had been published?
“My parents were very involved with it all the way through,” she says. “I don’t think I would have done it without their goodwill. I don’t think I would have been able to. It was hard enough and I couldn’t have done it without their goodwill and support and they helped a lot with remembering things. And lots of people in Yorkshire have been in touch with me, our customers from the pub, I’ve had some really beautiful messages. And a lot of them have said, ‘god, we didn’t know how bad it was for you’ and ‘you did do an amazing job of putting on a brave face’.
“Probably the sweetest but also slightly the saddest thing is that lots of my brother’s friends have been in touch with me which is obviously beautiful but I just find it heartbreaking. They say I’ve really ‘got him’ which is wonderful. One of my big worries was, would I be able to capture him, would I able to put him on the page? And loads of them told me funny stories which is beautiful but also bitter-sweet because they are all grown up now and they’ve got children which of course is lovely but it’s a very big reminder of everything that didn’t happen for Matty.”
That waste, the ‘what if’, the theft of that person’s future. It never goes away. Just this week, as I was finishing this article, news came through that my friend Mary had been awarded a seven figure settlement at the High Court. Obviously, this is good news. The knowledge that Mary will be provided for financially for the rest of her life. But it is heartbreaking nonetheless and throws into stark relief the meagre £2,700 fine imposed on the driver who ruined her life.
Rentzenbrink’s book gave me something I didn’t know I’d been looking for: the real, absolute feeling that I was not alone. The assurance that it was OK to wish that Mary had died. That wanting that didn’t make me a bad person. That wishing away the last four years of horror for her was normal, that clinging onto that last vestige of hope is what everyone does. That feeling sad all the time isn’t weird. That crying uncontrollably for no apparent reason is perfectly human. That being saturated with grief isn’t unusual. That the selfish, gnawing desire for release isn’t evil. That hoping against hope that this torture Mary is going through may one day end. That believing, if something similar happened to me, my family would put me out of my misery.
There, I’ve said it. I don’t feel better for admitting it. But I do feel that a burden has been lifted by reading Rentzenbrink’s book. If a piece of writing can give you a greater gift than that, all the while in the face of such terrible suffering, then I’ve yet to find it.