About The Author
Cathy Rentzenbrink was born in Cornwall, grew up in Yorkshire and now lives in London but is shortly returning to Cornwall. A former bookseller, she is a writer and journalist and a former Project Director of the charity Quick Reads.
Her first book, The Last Act of Love, which was shortlisted for the Wellcome Book Prize, describes how her beloved younger brother Matty was hit by a car returning from a night out. The family watched over him – first in a hospital ward and, later, at home – in the hope of a recovery, but it became apparent that Matty was in a persistent vegetative state. Eight years after that fateful night, the family made the traumatic decision to apply to the courts to end his care and to allow him to die. The book was a heartbreaking yet uplifting testament to a family's survival and the price we pay for love.
Now, in her new book, A Manual for Heartache, just out in paperback, Cathy describes how she learnt to live with grief and loss and find joy in the world again. She explores how to cope with life at its most difficult and overwhelming and how we can emerge from suffering forever changed, but filled with hope. A moving, warm and uplifting book, it offers solidarity and comfort to anyone going through a painful time, whatever it might be.
Below, exclusively for Foyles, Gavin Read and Frances Gertler talk to Cathy about the hierarchy of pain, the instinct we share to tell our stories and the advice she's written for her future self. Below that is an interview by Jonathan Ruppin about The Last Act of Love on the importance of being realistic about medical 'miracles' and the authors whose books sustained Cathy at her darkest times.
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Author photo © Geoff Caddick
Questions & Answers
What made you want to write A Manual for Heartache?
My first book was about the long and complex death of my brother and so many people wrote to me or came to talk to me at events that I realised that what I’d thought of as a story specific to me and about my sadness, was actually quite a universal story of loss. Irrespective really of what the thing is that has made us feel pain, the way we then behave is often quite similar. So I wrote this book as a response to those conversations I had with people.
There is a way in which the two books act as companions to each other isn’t there?
I was talking to a therapist about stories and how we use them to try and work out our lives, and they told me about the concept of content and process. The idea is that content is what happens and process is how we try to accommodate it. And I realised in lots of ways my first book was my content, it was the story of what happened to my brother and how hard I found it to witness, but I wondered if there was a way of usefully and helpfully sharing my process in another book that would be less about me and more about the universal nature of heartache and suffering and the things that we can all do to try to help us live well, no matter what the thing is that’s caused the pain, that’s the process part.
What are the most and least helpful things people can say to a loved one who is suffering heartache?
Sometimes we can over-assume responsibility when someone is hurting, but I think the worst thing you can do is be so frightened of saying the wrong thing that you don’t say anything at all. People feel very lonely when something terrible happens to them and so anything you can do, any offer of practical help, is better than doing nothing at all. And I’ve come to see that there’s a simple beauty to just being with someone as they’re in distress and holding their space for them a little. Of course everybody’s different so there are no set rules, but if you can approach everything with kindness and love and compassion then that’s what you need to do.
You mention the idea of a hierarchy of problems, competition, if you like, between bad experiences. Could you explain what you mean by that?
I think as a society we try to impose a hierarchy on pain. So we expect some things to be difficult for people but can be a bit more dismissive about other things, whereas actually it doesn’t matter what the source of the pain is. If you feel hurt by it then it’s important, it matters and you need to look after yourself and be looked after by other people with love and care. Obviously, we understand that death is going to be difficult for people, but I think we really underestimate, for example, the impact that work situations can have on people. When someone gets made redundant unexpectedly that can be incredibly significant and difficult. Nobody really rates it as a ‘thing’. Sometimes somebody can suffer something that’s a bit undignified or might be perceived as their fault, and again, it’s more difficult for them to get support from the society around them. I always try to think that none of that hierarchy matters. If you as a person are feeling sad then telling yourself off and saying you don’t deserve to feel sad is not going to get you anywhere.
Could you say something about the difference between a friendly ear and a professional one? Does it matter to whom one tells one’s story? Can you wear your friends out?
I think we would all do well to try to express ourselves, to try to tell our stories, but obviously it’s a complex thing. Some people are more naturally inclined to chat, others find that more difficult. It’s why writing can be really helpful, because of course it’s something you can do privately and alone. I am a fan and an advocate of therapy. I know that not everyone can access it but I do think that anything that can be done to de-stigmatise having it is a positive move. One of the things I’ve always found about therapy is that, at the very least, it provides a space where you’re allowed to be sad. The first time I went I found I no longer felt quite so much like an unexploded bomb of pain as I had done when talking to my friends, because I was able to unload onto a professional. There are lots of different ways to explore things. I have a reciprocal arrangement with one particular friend that when we need to we can just ring each other up and without judgement one of us will talk the other one down off the cliff. It’s a really useful and helpful thing to have.
How are grief and mental ill health connected?
It’s a very complex thing. If you are feeling sad because of a loss, there isn’t something wrong with you, that’s part of being human. Grief isn’t an illness but obviously grief can become part of a complex thing that might end up as, say, post-traumatic stress disorder, and it’s difficult to unpick it all. If I could give advice to my former self, it would be that, while I couldn’t do anything about the fact that bad things happen, I would encourage myself not to try to escape from the pain and to know that it’s alright to be experiencing that pain. Many people have said to me that when they were in their first stage of grief they actually thought they were insane. Further along the line they realised that wasn’t insanity, they didn’t have a medical condition, it was just how grief feels. Sadly, it’s part of being human and it’s ultimately the cost of love. If we love deeply then we will lose people and we will feel terrible.
I’ve also been thinking how there’s feeling bad and then there’s feeling bad about feeling bad. We’re often full of self-loathing because we think we shouldn’t be feeling bad at all. I think we need to accept that something has hurt us and that it’s OK to feel pain and the best thing to do is have a really good cry and take care of ourselves rather than this bracing up and telling ourselves we shouldn’t be caring any more. If we care about something it’s much better to pay it a bit of attention, acknowledging the validity of our feelings can be quite an important step.
How are physical and mental health treated differently in your experience?
I think I found things easier for myself when I started to try to think of my mental health as though it were my physical health. I do have a bad back and it doesn’t actually cause me any anguish, I just know I’ve got a bad back. It might be a little bit unfair that I have it, but I don’t spend an awful lot of time thinking about why I do, I just get on with trying to do the right things for it, which include, if it gets really bad, seeking professional help, and taking sensible precautions. And if you start thinking of your mind as if it’s your back or your dodgy right hand or your skin then somehow it takes that fear and panic out of it. I think it would be helpful if everybody, whether or not they have mental health issues themselves, took more of that approach. If I go to the doctors for a physical ailment, I don’t feel bad about taking up their time. Whereas if I go because I’ve been depressed for quite a long time, I always feel terrible about taking up the doctor’s time. Of course I know depression isn’t logical. I’d never think someone else with depression is taking up the doctor’s time, but I tend to think I’m taking up the doctor’s time, so I’m trying to stop beating myself up about that.
I think there are definitely things you can do to try to stay in a good place mental-health-wise, lots of which are quite banal. I do now know I have to be really careful with alcohol. It’s quite easy for me to drink myself into depression and I can do it very effectively in about 10 days of excess so I don’t do that any more. So there are things like that. Then there’s also just the unpredictable nature of depression and not fully understanding it. Nobody fully understands it and that’s what I’ve also realised. I used to think there was some magic thing I could learn that would somehow make everything OK but to date there doesn’t seem to be, and I’m still trying to pick my way through what’s an appropriate response to a world in which really cruel things happen, and to recognise at what point I have tipped over to where my vision is very bleak and I’ve ceased to be able to use any type of logic in interpreting my surroundings. So that’s my personal challenge, which I think I may be getting a little bit better at navigating.
What prompted you to write the advice to your son section and how did you decide what to emphasise?
It was a period of anxiety and wakefulness and again, probably because I was consuming too much news, too much alcohol, too much caffeine, too much phone and lying awake in the middle of the night. I’m not unusual in this, lots of parents worry endlessly about how to keep their children safe, and gradually I realised that I can’t keep him safe, that’s the thing, we can’t keep the people we love safe, but I realised that too much worrying about the future was ruining my present. So I started mentally composing a list of advice for him – because as well as worrying about something happening to him, I was worrying about something happening to me and that I wouldn’t be there any more – so I started mentally composing this letter to him with all the things I’d like to tell him if I wasn’t going to be around. And I just enjoyed doing it, then I started writing it down and it grew into a thing. He thinks it’s quite hilarious because I read it to him quite often and we talk about how useful it is and he says, ‘I don’t get that yet,’ and I’ve told him he doesn’t have to understand it all right now. So it’s been quite a nice thing to do.
You’ve also written instructions to your future self. It may be too soon for you to have gone back to them yet, but can you envisage yourself connecting to the person who wrote those things?
Actually, I’ve already used it several times because what I have realised is that mental health can be like being on a staircase, and in my own case it’s so worth putting effort into trying to stay on the middle steps because the further down you go the more difficult it is to get up. At the point at which I start to feel a bit low it is possible to intervene and do things that will either make things worse or make them better. So I wrote a letter called Instructions to my Future Self and I’ve already used it several times, because when you’re depressed your whole world outlook is bleak and your ability to think and process thoughts is reduced, so I realised that my well self needs to tell my depressed self what to do so I can look after myself in the future. So I wrote down a set of instructions, and they’re really simple but they’re really good and I use them. It’s just about stopping and almost literally taking a few breaths and just trying to pause.
Interview about Cathy's first book, The Last Act of Love
Your mother describes her evidence at the hearing to decide whether or not Matty should be allowed to die as her 'last act of love'. What part has your own last act of love, your book of that name, played in helping you come to terms with the long death of your brother?
I often think that I had to write a whole book because I was unable to talk about it at all. It’s such a complex thing to explain and I am pleased that I have managed to wrestle it all on to the page. I’m also jumping up down with pride that I have managed to capture my magnificent brother. I had lost him. He was buried under the eight years between his accident and death but now he’s very present in my mind, full of fun and jokes.
You recall an occasion with Matty before the accident when a film reduces you to tears, but he remains unmoved, explaining that he couldn't be upset by something he believed to be fictional. Do you think this played any part in your eventual decision to abandon trying to write about what happened in the form of fiction?
Possibly. I felt he deserved to be written about as himself, not a paler, made up version. Most of my previous attempts to write about it were fiction but the story is so long, the drawn out nature of it so tortuous that I couldn’t make it work. It defies the narrative drive that we look for in novels. Also, I wanted to tell the truth, in as far as anyone can. Every so often, always when I had to write about something I couldn’t bear to remember, I wished I was writing a novel and could have the relief of making things up but I think it was so important for me to find the stamina to try to tell it as it was and not seek refuge in fabrications.
Having been very selective in the past about the people whom you've been prepared to make aware of Matty's condition, how do you feel about sharing your story in such a public way?
Well, there were years of drunken talking about it all the time before there were years of not talking about it all. What I like about having written a book, is that it’s up to the reader whether or not to read it. What I hated about telling people was that I’d worry about their reaction. Now people can choose whether this is something they want to know about and I don’t have to fear that I’ve trapped them in a corner of a bar and they’re thinking, ‘I only asked if she had any brothers or sisters. I didn’t expect THIS.’
You note the how the press romanticise the story, claiming, for instance, that Matty reacted when told about his impressive GCSE results. You also come to realise that stories about miraculous recoveries from similar conditions tend to be inaccurate; the sufferer's condition usually turns out to be less serious. Does this make you wary about talking to the press when undertaking publicity for the book?
This is such an important subject and needs to be talked about and I’m just about brave enough now, I think. (Cross your fingers for me!) So many misunderstandings abound about comas, vegetative states and brain damage and I’m a bit nervous about exposing myself not so much to the press but to the commenters. It seems to be an inescapable part of modern life that if you want to express any view at all – especially a contentious, complex one – you have to be prepared for censure. Most people are kind, reasonable and compassionate and I’ll try to focus my attention on them.
After some years, having spoken to counsellors and looked into similar cases, you came to realise that being so traumatised is a reasonable and common response. What lesson would you most like to share with any other family with a relation in PVS?
Try to treat yourselves and each other with gentleness and compassion. It’s a hard road. I think PVS cases lead to a situation of multiple tragedy. The person who suffered the injury is gone, but because they are not quite dead, the rest of the family can’t grieve and try to adjust to life without them. It’s profoundly psychologically and philosophically difficult to be with the physical body of someone you loved but for the essence of them to no longer be there. And, of course, it’s not sleeping beauty, like the books and films lead us to believe. Epileptic fits, spasticity, deteriorating skin… it’s grim. It’s a hard thing to realise, but death is not always the worst outcome. My brother’s accident nearly did for me, too, and I don’t think that would have been the case if he had died on the night he was knocked down.
You were a voracious reader from a young age and reading seems to have been one of your few comforts at your darkest times. Are there books that bring Matty's condition to mind because of the times and places in which you read them?
Books have always been my friends. I have an extreme fan-like soppiness for Julian Barnes. I read Metroland when I was 17, just before the accident and that was why I studied French, because I wanted to go to live in Paris. He’s so good on love and death. At sixth form I read The Bell Jar by Sylvia Plath and had to write an essay on ‘What is the bell jar?’ I wasn’t sure I fully understood and then, a couple of years later, it was a shock to realise that I completely got it and was experiencing a bell jar of my own.
There’s a wonderful novel called The Colour of Heaven by James Runcie that I read when I worked at the Waterstones in Harrods in 2003. Two characters have a conversation in it about whose voice they would want to hear if they were dying. I remember how sad this made me because I was so lonely and I didn’t know.
As I wrote the book, I read a lot of grief memoirs and novels about losing siblings. At one point I wrote about them, there was a whole strand of the book about reading and responding to other people’s stories but I took all that out at a later stage. I didn’t want my book to be off putting for people who might not be big readers.
In times of extreme hardship, reading has helped me feel less alone – other people have been unhappy, too – and been a diversion from my swirling thoughts. Authors who held my hand through the darkest hours include Jilly Cooper, Georgette Heyer, Agatha Christie, P G Wodehouse, E F Benson, Jane Austen and Nancy Mitford.