The Last Act of Love

by Cathy Rentzenbrink

  I dream of Matty. He’s there at the bunjee-jumping place in France, sitting next to the camera. He’s grinning back at me, willing me to jump, willing me to fly safely and bounce back.

  Somewhere along the way, my grief story became a love story. I have worked out that the only way to be alive in the world is to carry out acts of love and hope for the best.

  Dear Matty,

  My dear, my dear,

  I’ve been thinking about Blackadder. Do you remember how we loved it and used to quote it at each other all the time? I was remembering the bit in Blackadder Goes Forth where they have been captured by the Germans and are warned about what to expect. A fate worse than death, they are told, in a silly German accent. And do not try to escape or you will suffer even worse. Even verse.

  ‘A fate worse than a fate worse than death?’ says Blackadder with his famous raised eyebrow. How we laughed. You were so funny. I’m sorry I lost sight of that. I think about it a lot at the moment. I remember you dancing around wearing the traffic cone, hitting me on the forehead with a spoon. And The Young Ones. We’d sidle up to each other:

  ‘You dancing?’

  ‘You asking?’

  ‘Yes.’

  ‘Well, piss off.’

  My dear, my dear, what I wanted to say, really, was that I have realized that it could have been worse. You suffered a fate worse than a fate worse than death, but it did come to an end for you and there was a legal solution. Other people who are a tiny bit ‘better’ are worse off in that there is no legal end to their half-lives.

  I’ve worried and worried over the years about what an unnatural thing it is to desire and bring about the death of a loved one. How could I have wanted you to die when I loved you so much? But I see now that it is a question of cause and effect and that desiring death is merely the effect. The cause is that we are unnaturally able to prolong life and that no one has much of an idea or plan about what should happen when life-saving interventions and neurosurgery lead to a horrible outcome. That’s why people like me are made to feel like murderers. It shouldn’t happen. I nearly went doolally. Want some more Blackadder? I was ready to put my underpants on my head and a couple of pencils up my nose and be of no use to anyone.

  My little boy Matt reminds me of you. I can see he’ll grow into the things you liked: Meccano, technical Lego, science experiments. He loves Star Wars. We watch it again and again, and he said the other day that he thought Darth Vader would have been a nicer boy if he’d had a mummy and daddy to look after him, which is both cute and true. We were lucky to have our parents. Do you remember how you always wanted Mum to do my hair like Princess Leia? I carry a photo of us around in my wallet. We are maybe seven and eight. My hair is in plaits and you have your hand curled around one of them.

  Matt would have loved the garage at the pub. I wish we could time-travel and take him to it before it was knocked down to make room for the bungalow. He’d be drawn to the disused motorbikes, tool boxes and experiments. I’ve no idea what you were doing in there. I wouldn’t have been interested in what you were trying to find out; I only ever cared about understanding how people work. You and him, though – I wish I could see you with your heads together as he asked questions you’d know the answer to. I wish I could see you lift him up in your arms and dangle him over the inspection pit. I can almost hear the excited shrieking.

  All being well, I have another eleven years of watching Matt grow up to be the age you reached, and then he’ll pass you by, pass us by. In some ways, I think of us both as frozen in time in your garage or sprawled on your bedroom floor listening to music. I left a bit of myself there, though I, of course, did get to grow up, did get to carry on in the world, which has not always felt like the blessing it should have. I’m listening to Brothers in Arms by Dire Straits as I write this. I remember us lying on the bank at Granny’s in Ponsanooth in the sunshine as it floated out of the window. We were still some time away then from your destruction. From me witnessing your suffering.

  When I went to Cardiff and was interviewed about everything that happened to you, I talked about how insane it felt for me to ever complain about anything when you were as damaged as it was possible to be without being dead. It made me think again about when I stopped talking to you. The thing was, I couldn’t tell you the truth. I always talked to you as though you understood everything I said, so I couldn’t tell you how terrible it was to be without you. I told you happy stories and jokes. I didn’t tell you about lying drunk and sobbing on toilet floors at other people’s birthday parties. I couldn’t talk to you about how it felt to gradually realize that you weren’t getting better and you weren’t going to get better. I didn’t tell you that I didn’t want to go on without you. I didn’t stop talking to you for years, but I censored myself from the very early days. I couldn’t tell you the truth about what was happening to you, or about what was happening to me without you.

  I’m enjoying writing to you. I feel a bit like Harry Potter sitting in front of the mirror of Erised watching himself with his dead parents. You never knew about Harry Potter. He’s a boy wizard whose parents died when he was a baby. The mirror of Erised is magic and shows you nothing more or less than your heart’s desire. I know that if I looked in it I’d see you and me, grown up, maybe surrounded by children, our parents looking happily on. You have to be careful with the mirror, Harry is warned – you can go mad looking in it, yearning for what can’t be. At some point, perhaps, I have to give more of my love to the living. I don’t think you’d mind.

  I will of course always wish you were here. I’ll always miss the women that you would have loved and who would have become my friends, the children who would have been my nephews and nieces. I won’t stop thinking that life is paler without you, that every single occasion would have been enlivened by you. I miss the arguments we might have had, the burdens we might have shared. I miss you as a confidant. I could tell you anything. You never sat in moral judgement, though I don’t think I felt the pressure to be good until after your accident. When you knew me, I was just a girl, not a girl trying to be everything to her poorly brother and her shattered parents. I miss the way you would have told me to lighten up. If nature takes its course, I will miss you at the funerals of our parents, I will miss you at the births of any grandchildren I may have. If I steer clear of accidents, I’ll miss you when I first start feeling tired, when I first find a lump, when I first get a diagnosis. Will I still be missing you at the end, I wonder? They say people return to their childhoods. Perhaps I won’t have to miss you. Perhaps I’ll spend my last moments jumping off the sofa with you, learning to fly.

  Your ashes are still in Yorkshire. Shall I get you, my dear, would you like that? Shall I collect you from Mr Punton’s and take you on a journey? I’m not a very good driver, but you don’t have to worry about that. We could get the train. Go from Donny to King’s Cross, over to Paddington and then down to Cornwall. I feel Cornwall is where you should be. I think you should mingle with the earth in the land where our parents met, under the ground where we once stood side by side.

  I’ll bring Matt to visit you and tell him about you, the other boy called Matthew, and how much I loved you. Maybe that’s another act of love, for all of us.

  You missed lots of things. You never had a mobile phone or used the Internet. I think about you when I realize that Matt eats things that I hardly knew existed until I went to university. I don’t think you ever ate an avocado, an artichoke, aubergine or asparagus. And those are just the As.

  But you didn’t miss out on love. You were full of love, whether or not you wanted to doubt its existence. The last thing you said to our mother as you got out of the car at the Rainbow car park, as I was already on my way in to the noise and the music, was, ‘I love you.’

  You are so close to me now. I had lost you, buried under those eight years, but now I feel you. Sometimes I think you are walking down the street with me, telling me jokes. The other night, talking to a not very nice man at a pa
rty, I had the clearest picture of you tapping your forehead with your finger and looking me straight in the eye.

  The thing I still don’t know is whether or not you were at any level aware of your suffering. I hope you weren’t. Because if you weren’t, if the essence of you didn’t know what was happening during those eight years, then your first sixteen years were full of joy. It would be so wonderful to think that you never knew anything else.

  If you did, at some level, know, if you did, even after those epileptic fits, somehow know what was happening to you, then I am glad that at least we brought you to your death when we did and that you aren’t still there in a little room in Snaith Hall. It was, as Mum said, our last act of love for you.

  That’s enough, I hear you say. Fuck off, get over it. Stop banging on. I get it. Go on, go off and do something else.

  I met a woman who believes in an afterlife. She told me that I should think of you as being free. She wasn’t trying to convince me of anything, she just pointed out that whether there is an afterlife or not, you are at least liberated from your earthly prison. She also said that what helped her when she recently lost someone was trying to be grateful for the fifteen years they spent together rather than thinking only about the empty present.

  I asked her who the person was that she had lost. I was wondering if it could be a child of fifteen or a close friend or lover she had known for fifteen years.

  She looked a bit awkward. ‘Well,’ she said, ‘it was my cat.’

  And what I thought was lovely about this was that it showed me how I had healed. The old me, the angry me, the me who never managed to shed a tear for Polly, who envied people whose loved ones died a quick death, would have thought it ridiculous and obscene that someone could presume to think of you and a cat in the same way. This newer, softer, more reconciled version of me thought it was sweet. And a bit funny. And I thought you’d find it a bit funny too.

  There’s one more thing I want to tell you. It’s a confession of sorts. All those Sunday afternoons growing up in Almond Tree Avenue, there were sweets after Sunday lunch. Do you remember? Always the same thing. A pack of six liquorice Catherine wheels with a pink or blue Allsort in the middle and a bar of pink-and-white-striped nougat. The parentally ordained rule to ensure good sharing was that whoever cut, the other one chose. The thing I want to tell you is that I had a technique where I cut your piece slightly smaller, but then stretched it to make it look bigger and trick you into choosing it, which you always did.

  So I’m sorry about that. I’m sure you know that if I could go back in time there are many things I’d do differently, but I’d also not diddle you out of your fair share of nougat. You could have had all my nougat.

  Love,

  Your sister

  AFTERWORD

  It’s a strange and beautiful thing to have a book out in the world. Despite working in books, I was unprepared for the emotional force of all those firsts: the first time I held a physical copy in my hand, my first reading, first review, first event, the first time I received a letter from a stranger, the first time I cuddled someone who had queued up to ask me to sign their book.

  Perhaps because of the nature of my book, it feels like an ongoing and organic process. I’ve learned things about myself precisely because the questions I’ve been asked in interviews and at events, and the things people have told me about themselves, have helped to shape my thinking.

  I’ve heard from a lot of bereaved siblings or from parents who have lost one child and tell me that my book helps them understand the experience of their surviving child. Because of all these conversations, I understand sibling loss now more clearly than I did before. It’s a triple whammy of losing a person you love who has always been in your life – all my early memories have Matty in them; he was never not there – while you yourself are not fully formed, and the huge complexity of having to navigate parents who are now forever changed. I spoke about this with my friend Caroline, who remembers being upstairs on the night her sister died and hearing her parents sobbing in the kitchen below. ‘I’d never heard either of them make noises like that,’ she says, almost thirty years later.

  I hear from people whose relatives are or have been in PVS and, again, my understanding has been broadened. It was only really when I was doing interviews for the book that I started to think about how terrible the situation must be when the person in PVS has children. What must it be like to grow up while your parent deteriorates? Or to be the surviving spouse who has to explain why Daddy isn’t getting better, why Daddy isn’t saying anything even though his eyes are open? That seems to me like a whole new bag of hell and why it is so important that this thorniest of subjects – we have not ethically, morally or legally caught up with our technical ability to prolong someone’s life – is discussed.

  I also hear from people who have witnessed some other kind of complicated and lengthy death. I can see that this is an increasing problem, one that will affect more and more of us in years to come.

  People ask me a lot how involved my parents were before the book was published and how they feel about it all. I consulted with them at every stage and don’t think I could have written it without their goodwill. They are both very proud of the response and they like coming to events and reading the letters I get sent.

  My dad especially finds it very sad to remember those times, and as I was writing I often wondered whether it was right to put them through it all, but I had to cling to my conviction that it would be better for me, for them, and for little Matt to step into the silence we’d constructed around Matty and everything that happened to him.

  A lot of people tell me they are familiar with the unspoken family pact of silence; that they are giving my book to someone else in the hope that it will encourage them to be able to speak about their own pain or loss.

  I’m asked if the writing was therapeutic. Well, yes – I know I feel better than I did because I have succeeded in wrestling this complex subject out of me and on to the page. I’ve taken the tangled thoughts from my head and the sadness in every beat of my heart and put them into a book. The fact that the book is of use to other people feels like a miracle. I’m still a work in progress, though. Still struggling with the sadness, the never-ending zigzag of grief, and trying to do my best to live as though I deserve to be here.

  The question that stumped me for ages was whether Matty would be proud of me. I couldn’t wrap my head around all the conditionals – where he might be to be able to feel pride. And, as ever, the idea that anything that happened to me could be noteworthy given the magnitude of what happened to him seemed impossible. Then I thought about it some more and could imagine him saying, ‘What’s with all the crying?’ and, ‘For fuck’s sake, will you get over it and do something else?’

  And then, when the neurosurgeon Henry Marsh reviewed my book in the New Statesman, he very brilliantly contextualized it and I could imagine Matty being proud of that. ‘Finally,’ I hear him saying, ‘finally, you’ve clocked that you should use your words to make sure some other poor fucker doesn’t end up lying around for eight years like I did.’

  Matty does pop up to tease me, swear at me and offer unsolicited career advice. (‘What the fuck are you wasting time worrying about that for?’) He’s always swearing, always laughing and always encouraging me to lead a bigger, less fearful life. I have no idea whether he’s in my head or in some way exists – and I’m not sure it matters. It’s a gift to have even this slice of him, to know his speech patterns and his thoughts.

  I was talking at an event in Bristol about how, possibly because I read too many novels, I often feel I’m stuck in the wrong narrative. In Life After Life by Kate Atkinson or The Versions of Us by Laura Barnett, for example, the narrative keeps showing us alternative universes where a significant event did or did not happen. I quite often feel that not only am I a character in a book, but also that there’s a parallel universe out there – in life or on a shelf – where an undamaged version of me is l
iving a joyous life.

  Someone in that Bristol audience asked if I ever considered whether life could have worse, that perhaps I am in some way a stronger person because of Matty’s accident.

  ‘Oh, no,’ I said. ‘You see, in the other universe – the one that was taken away from me – my brother is a brain surgeon rather than being operated on by one; I’ve already written lots of books; our children are friends . . .’

  I couldn’t carry on. The thought of the little cousins my son might have had was too painful. Suddenly I was desolate. I got lost on the way to catch my train home, was nearly hit by a bus and felt waves of panic sweeping through me. For a moment I thought I might collapse, but I got my breathing under control and found my way to the station one slow step at a time. On the train home – more trains, I’m always thinking on trains – I realized that most of what I have to do now is about committing to the storyline I’m in, rather than continuing to pine for the lost narrative.

  And that’s what I’m trying to do. It’s a cruel world but there is beauty in it and perhaps the trick is in what we choose to pursue.

  I’ve realized that the thing I most value is honest connection with other humans. I used to only dare look for that in books but now I see it in actual, real-life people. By writing my pain onto the page, by leaving space in this tale of one family’s heartbreak for other people to identify and find common ground and solace, I’ve opened up a conversation. It’s one I enjoy having.