The Last Act of Love

by Cathy Rentzenbrink

  I talked about the erosion of hope, my guilt at wishing for Matty to die.

  ‘I feel damaged by the fact that I wanted his death. It’s really bad for your soul somehow, it goes against what you think you should be like and what you think you should want as a good person.’

  Jenny asked whether I thought my parents should feel guilt too.

  I was aghast. ‘No, of course not. Of course I don’t.’

  ‘Then why should you?’

  In the silence that followed I felt my world shift. Yes, why should I?

  I asked about whether other people would have known how little hope there was. Jenny thought that when the surgeon said he had saved Matty’s life but didn’t know if it was the right thing to do, he would have had a pretty good idea that the chances of a full recovery were already extremely low. And it narrowed considerably over the next few weeks and months. After a year with no responses Matty should have been defined as being in a permanent vegetative state. Jenny asked whether anyone had ever told us this.

  ‘No, but we might not have been receptive to that conversation. Mum remembers the physio saying to her, “We’re not winning.” That was his expression. I think we probably didn’t want to be told.’

  Every so often we’d take a break and Jenny would make us coffee. I’d nibble at one of her home-made biscuits and look out at the boats crossing the bay before sitting back down on the sofa and waiting for her to switch the camera on again.

  We talked about the report and how I had found solace in knowing that other families have had similar experiences to ours.

  ‘The report showed me that people change their minds – move from being convinced there’s a future to wanting their relative to die. It helped me to see that I behaved like anyone would in that situation, because there’s no road map for it.’

  Jenny told me that there are people out there who have played my role in this process and feel proud. I think I might have felt proud if it had happened sooner. I know that when I first wanted us to consider withdrawal I was focused on what was best for Matty. The problem was, it dragged on so long that by the time it came to it, I desperately wanted it for me, too, and that was confusing.

  Jenny asked why it mattered to continue to provide Matty with excellent, superior care, even when we knew he had no awareness.

  ‘There’s a difference between thinking someone doesn’t hear the music and stopping playing it for them. Even if you don’t think someone can feel pain, you don’t want them to get bedsores. Even if you don’t think somebody is aware of their circumstances, you don’t want them to have dirty hair. I knew that as long as Matty’s body remained alive, I would feel tortured about what was happening to him. And I would need to care about what was happening to his body, and I would need to care about who was washing his hair, and I would need to know that people were not being unkind to him, and I would need to know that he was being looked after, even if I couldn’t bear to do it myself; even thinking he wouldn’t know about it.’

  We talked about my own end-of-life wishes.

  ‘I wouldn’t want to be kept alive with a headache, frankly,’ I said, laughing. ‘I’m not quite saying that if I stubbed my toe I’d want someone to hit me over the head with a hammer to put me out of my misery, but it’s not far off.’

  ‘What advice would you give?’ asked Jenny. ‘If you could say one thing to families at the start of this journey, what would it be?’

  It was so horrible to think of anyone being subjected to any of this that I struggled to find an answer to her question. But eventually I said, ‘Treat yourselves and each other with kindness and compassion. That’s what I’d say.’

  ‘Do you think you might be able to take a bit of that advice yourself?’

  I looked at Jenny’s kind face. I thought about her and all the other relatives. All of us dealing with a situation that was just too hard to bear. I thought of my parents, how fortunate I was to be so well loved. I thought of my little boy. When I was heavily pregnant I spent a lot of time in Chiswick library. There was a bench outside which bore a dedication: ‘For my mother, a woman of courage and compassion.’ I’d often sit on the bench looking at the plaque and wishing I knew the story behind it. I’d rest my hands on my tummy, feel Matt move inside me, wonder how I could ever measure up.

  Now I think maybe I did, maybe I have. Maybe I was already a woman of courage and compassion. Maybe I could learn to treat myself with the kindness I’d feel for someone else in my situation.

  ‘I think so, yes,’ I said to Jenny.

  Jenny drove me to the station, and on the way back to London I stared at my tear-stained, puffed-up reflection and thought about all the other times I’d seen my grief-laden face in train windows. I realized that I no longer wanted to press delete on those eight years. Matty had needed me. Our parents had needed me. We carried out the hardest of duties in the cruellest of circumstances. ‘This is our last act of love for Matty,’ Mum had said in her affidavit, and she was right. I’d forgotten over the years how it would have been easier not to do it. It would have been easier to abandon Matty and never face that tough decision, but we did the right thing.

  A few weeks later, Jenny sent me a link so that I could preview the website my interview clips would appear on. I dreaded watching them, but as I cried my way through, I began to feel admiration and respect for this girl, this woman, trying so hard to find words for the unsayable. She didn’t look flaky or mad. She looked intelligent, thoughtful, brave. I’d grown so used to thinking of my experience of what happened to Matty as a millstone that weighed me down, as a toxic narrative I couldn’t express, that it was strange to find that my experience had value.

  Now I could see myself in a wider context. I was . . . I don’t really want to say ‘a victim’, but ‘a by-product’ of a wider societal problem – that we don’t know how to deal with the shades of grey that now exist around life and death. We don’t know what to do with the unsuccessful output of the surgeon’s scalpel. Reading and seeing the testimony of the other relatives, I was fascinated that they thought the same way I do, often using the same language. This isn’t group-think, because no one is yet talking openly with each other about this. We’ve arrived at certain thoughts because of our individual but shared experience. I watched a man say almost exactly what I had once said, that we extend more courtesy to serial killers on death row than we do to our nearly dead. There was a lot of talk about pets, how it’s better to be a poorly animal than a poorly person. I remembered taking Sophie’s cat Minnie to the vet for her final journey, her sweet truncated last miaow. There are kinder ways to bring life to an end than starving someone to death.

  A few nights later, I dreamt of Matty. He did not look like a person with a damaged brain. His face was animated, though old and etched with lines. He had that look you see in middle-aged men who are in prison, or homeless, or addicts. It’s a greyish, weary look that speaks of endurance and suffering and of subjecting the body to excess. Back in Snaith, in the pub, we’d have described such a look by saying, ‘you can tell he had a big paper round’, and everyone would have laughed, while acknowledging that some have greater burdens to bear than others. Often, in such faces, eyes that have borne too much witness are cast down and reluctant to be seen and read.

  But in my dream, my still handsome brother looks at me out of his tired, kind eyes, and forms his thin, pale lips into a smile. ‘I’m glad you did it,’ he says. ‘Thank you for doing it.’

  I stroke his face, run my fingertips gently over the crow’s feet cut around his slate-blue eyes, and then lay my palm flat against his beautiful face.

  ‘My dear,’ I say, ‘I’m so sorry. I’m so very, very sorry.’

  ‘I know,’ he says, letting his face rest against my hand. ‘I know.’

  CALLING TIME

  Over the last couple of years, I’ve written this story into notebooks and laptops, on planes, trains and in motorway service stations. I’ve dropped Matt at school and gone round the cor
ner to the Café Rouge that overlooks the Thames, where I have a regular table next to a power socket. I found the same disposable fountain pens full of purple ink, and always have several about me; on my desk, in my pockets or in my bag. I’ve thought it all out while walking across London from meeting to meeting. I’ve learned to love the river; I worry less that I might throw myself into it. I walk across all the bridges, and like to stop halfway, looking down to St Paul’s, up to the Palace of Westminster.

  I feel lucky to be alive in my time. I don’t limp, I stride. Sometimes I almost think I’m floating, that my feet aren’t touching the ground, but I know they are because I can hear the confident click-clack of my boots. When it’s going well, I can write straight onto my phone, standing up on a packed tube. When I’m questioning the wisdom of doing it at all, I sit sullenly in front of my laptop watching my fingers bleed into the keyboard. There are times when it has felt like an exercise in self-harm, but I’ve trusted in my determination to lance the boil and I do now think that the poison has been drained away.

  Matty’s ashes are safe at the undertaker’s – they have some dating back fifty years – and one day I’ll pick them up from Yorkshire, but I’m not quite ready yet. What’s the rush? We are still at the grief party, after all. A place where the clocks have no rules, where the bar is always open. A place that you get a pass from, after a while. A stamp on your hand that allows you in and out, that lets you come and go, though not quite as you please. The only mistake, on being allowed out of the party, is thinking that you won’t be back.

  Grief is not linear. If you could plot it on a graph, you wouldn’t see a continuous upward gradient from tragedy to recovery but a sharp set of zigzags. It’s tempting to think that collecting Matty’s ashes, doing something with them, will feel like an ending, but I’m not sure the gaping hole where I long for my brother to be will feel much less vast, that the edges of that gaping hole will feel less ragged. Sometimes an absence can become as significant in our lives as a presence.

  I remember one of our customers in the pub had a teardrop tattooed under her eye in honour of her dead brother. I don’t want a tattooed teardrop, but that’s how I feel. Victorians wore mourning brooches. I don’t want to be wearing something full of Matty’s dead hair, but I’d almost like a visible sign. A mourning ribbon. Black gloves. I don’t think I will ever not be sad about this.

  But there is so much to be thankful for. The box of despair is unpacked and distilled into these pages. I now think of myself as carrying a rucksack of grief. In some ways it is my ballast. I’m used to it. Occasionally it is so heavy that I’m not sure I can continue carrying it, but most of the time it’s bearable and some days I hardly notice it at all. I have to trust that the me without the rucksack – or with a lighter load – would not float away. That if I succeed in putting down my burden, there will be something else there. That I am not just the sister of Coma Boy.

  I’ve learned that almost everyone has a rucksack. The world is full of people carrying around a toxic narrative, pulled down by a sadness or a grief that they don’t know how to share, and all of us are hiding it from each other. I used to bury myself in books about grief, but now I talk to real people about it too. One of the problems of being over-dependent on books is that I crave the degree of narrative resolution that you find in novels. Talking more to real people has helped me to see life as the glorious, unshaped mess that it is. Things won’t fit, won’t behave, won’t allow themselves to be finished, finite, completed.

  When I started writing this, I thought I just (just!) had to force myself to sit down and write down what I knew. I would order my thoughts, admit my fears, look my guilt in the face. I’ve done all that, but as time has gone on, what I think about what happened has changed.

  I’ve told the truth as I see it and remember it. I’ve been a bit light on the details, especially around my own maddery, which is a word I’ve pinched from Marian Keyes. And boyfriends! I’ve left out significant others and insignificant others, but there were a lot of them. There were men who had a bit of a thing for damaged girls, and men who thought I should just get over it. For years I left a trail of broken glass wherever I walked. I’m not proud of lots of things I did in my quest to distract myself from my grief. I’m not proud of my excesses, though I have survived, and was always fortunate in the kindness of strangers and the forgiveness of my friends.

  These days, I’m happy to be my real and full self in front of people and I’m less frightened of love. I’m allowing myself to love Matt more, to let him love me.

  ‘When will you die, Mummy?’ he asked the other day.

  ‘I don’t know, darling, nobody knows.’

  ‘It won’t be till I’m a grown-up, though, will it?’

  ‘I hope not, but no one can say for sure.’

  ‘I don’t want you to die, Mummy.’

  ‘I know, darling. It’s so sad when people die. But they do.’

  Grief is the price we pay for love. It is, we have to believe, better to have loved and lost than never to have loved at all. I had a brother. I learned about love by loving him. He had the first bits of my heart. He died.

  ‘It’s a design fault, surely?’ I said to my mother once. ‘It can’t be right that as humans we are so maimed by the loss of each other when we are so fragile.’

  ‘Well, we were designed before the internal combustion engine, weren’t we?’ she replied. ‘Both physically and emotionally. If we were being designed now we would be built with harder heads and harder hearts.’

  There is no longer a family conspiracy of silence about Matty. My parents and I talk about him, and what happened after the accident, a lot. My mother said that she didn’t want to talk to me too much about her grief for Matty because she didn’t want me to feel that I wasn’t enough. She also thinks I’m wrong to think of myself as second best, as the weaker sibling. She pointed out that people would have said just as many nice things about me, had I been knocked over; they would just have been different. Instead of telling the nurses that I could do a hundred press-ups at a time, they would have been talking about how full of life and love I was, how I could make everyone laugh and feel happy. She reminded me that, in the years before I became grief-dumb, people used to say that there was no need for me to kiss the Blarney stone, I’d been born with the gift of the gab, I could charm the birds from the trees.

  She now knows my secret theory that it would have been better for everyone if I’d been knocked over instead, and she doesn’t agree.

  ‘I don’t think I’d have survived without you,’ she says. ‘Matty could never have done what you did. He was lovely, so lovely, but he never had the love in him that you have. He couldn’t have kept the family together like you have. He’d have been upset, very upset, and probably very inventive at the early stages of rehab, but pretty soon he’d have been off. He wouldn’t have wanted to hang around and watch his dad cry, watch my false hopes, wouldn’t have had a drop of your sensitivity. I don’t know what we would have done without you every step of the way. We needed you. We needed you for the survival of the family.’

  Our family does now function again. We have remade ourselves into a three-wheeled car, a Robin Reliant. We’ll never have the shining splendour of our top-of-the-range pre-accident model, but we drive along pretty well. I no longer feel like a broken wheel and nor do I feel a weight of expectation. I’m no longer trying to be everything – I’m just being me, and that’s pretty good.

  And there are no secrets. One afternoon last summer, out in the garden at Ponsanooth, my dad told the story of a disastrous family trip to Helston boating pond with my granny. It was when Matty and I were about six and seven. Dad was hungover and it was a Sunday in the days when pubs shut at 2.30. He was hoping to slope off for a livener but could see the chance slipping away. Giving up on it, he agreed to take Matty out on the pond. There were normal rowing boats, but Matty had set his heart on a Canadian canoe.

  ‘It doesn’t look that stable to me, Mat
ty,’ Dad said, rocking it from side to side with his hand.

  ‘It’ll be fine, Dad,’ Matty said, jumping in and picking up the oars.

  A few minutes later they capsized, Matty swam away for dear life, and Dad stood up and realized they were only in a foot or so of water.

  Granny was on the bank saying, ‘That’s my son-in-law,’ and Mum was telling her to shut up.

  We were all in hoots at the story. Matt was listening intently, taking it all in. Later, he asked, ‘Was there another boy called Matthew?’

  ‘Yes, darling, there was. There was another boy called Matthew.’

  And I told him a version of the story that his four-year-old mind could grasp. He knows I had a brother who died when he was knocked over by a car. He knows it made me very sad.

  I had a brother, he died. I could endlessly elaborate on that sentence, but perhaps that’s enough for now.

  I think a lot about the pub, about how we enjoyed ringing the big bell for last orders on busy nights and then calling time after a last flurry of ones for the road. Is that what I’ve done, here? I’ve rung for last orders on all my guilt and now I’m ready to call time on it.

  I know I’m damaged. As I’ve walked through fire, bits of me have burnt off – but I accept that. I’ve come across a new word. Kintsugi is a Japanese style of ceramics where broken crockery is mended in an intentionally obvious way. Rather than try to hide the crack, it is filled in with gold and the breakage becomes a part of the object’s story. I love this idea.

  I think how I am often drawn to broken people and find them beautiful. I have decided that I can stop yearning to be fixed or trying to hide the scars: I can decide to think of my brokenness as an integral and even beautiful part of me. I’ve gathered up all my scattered selves and don’t feel fragmented any more.

  Perhaps the most miraculous thing is that I no longer feel mad or in need of a diagnosis or a magic medicine. The other day Matt, now five and enjoying Maths at school, announced that he was counting to infinity. That’s it, I thought. My sadness is infinite. I feel sad whenever I think about it. I cry whenever I think about it. But I no longer expect that my tears will come to an end. I am no longer surprised that my reservoir of grief is so full and refillable. Because I am no longer surprised, I am much better able to live with it. I weave it into my days. I can cry and laugh at the same time.