The Last Act of Love

by Cathy Rentzenbrink

  When I was getting ready to go again the next Sunday, Mum asked if I was sure I wanted to.

  ‘You don’t have to, you know.’

  ‘Then I won’t,’ I said.

  I was grateful to be spared, and I didn’t go again. Now that I thought it would be better for Matty if he died, I didn’t know how to be with his physical body.

  One night I was serving behind the bar when a young man asked me if I was Cathy. He said he knew my brother.

  ‘Oh,’ I said, surprised I didn’t know him. ‘That must have been a long time ago.’

  ‘No,’ he said. ‘I’m a care assistant up at the Hall. I look after him.’

  I felt a bit sick. He was smiling at me, clearly just wanting to make friends, but I felt invaded.

  You’ll know I don’t visit him, then, I wanted to say, but didn’t. So why would you think I’d want to chat about him over the bar?

  As far as possible, I tried to put Matty out of my mind. Books helped. Booze helped. I spent the summer working in the pub, drinking hard at every opportunity. We often did lock-ins, just a few, very trusted customers at the end of the night for an extra couple of drinks. No one paid for anything; we thought of it as having people over in our own house. Mum and Dad would go to bed, and I’d stay up half the night drinking and joking. We’d turn off all the lights in the pub except the bar lights, and we’d invent drinks, setting up rounds of flaming Drambuie, seeing which spirits would go well with Guinness. I trained myself to like Campari that summer and learned how to open bottles of beer with my teeth. All I had to do was stay sober enough to lock the door and set the burglar alarm.

  Britpop had arrived, and the summer unfolded to the sound of Pulp’s ‘Common People’ playing again and again on the jukebox. My parents and I felt liberated, could take days out together without having to arrange cover for Matty, could go back to the bungalow and not be faced with his blank stare.

  One sunny afternoon in late August we went to York. We had a long lunch and then Mum went off shopping while Dad and I had a drink outside the King’s Head on the riverbank. We loved this pub. It had a picture of Richard III on its sign and marks inside that showed the levels the water got to every time it flooded, which it did every couple of years or so.

  There was a carnival atmosphere – men with no shirts on sitting on the bridge over the river. ‘They’ll start jumping in as the day goes on,’ Dad said. On the next table a group of Geordie lads who had lost all their money at the races were earning their fare home by eating live wasps for £1 a time. They’d trap them in an empty pint pot, get the pound, and then pop them into their mouths. There were plenty of takers, and once they’d raised enough money they strolled off to the train station.

  In the middle of all the joviality, Dad and I were deep in talk. We both felt that even though life was much better for us since Matty had gone into the nursing home, it was really no better for him. Would he want to be in a home with old people, unable to speak, move, or express an opinion? Would he want his food pumped into his stomach, his dribble wiped, his pee collected in a bag, his poo controlled by suppositories? We both agreed that it would be better for him if he died. The Tony Bland case had alerted us to a legal path. No pillows over his head, no overdosing on the medication.

  Mum came back from shopping and sat down next to us.

  ‘We’ve been talking about Tony Bland,’ I said.

  Her face crumpled. ‘I’m not ready,’ she said. ‘Let me get used to the nursing home first. I’m not ready to talk about anything else yet.’

  We agreed we wouldn’t bring it up again until she raised it.

  As we gathered our stuff and left, I saw that the couple at the next table were staring at us. I realized that we probably sounded like we were planning a murder.

  PLAINTIFFS

  I went back to Leeds for my final year feeling less burdened than at any other time since the accident. I moved in with Sophie on Delph Lane, a nice little street just a ten-minute walk from the university. There was a wonderful curry house called Naffees just up the road, and we went there a lot. I’d order a lamb dopiaza with a paratha, eat half, and ask them to pack up the rest so I could have it for breakfast the next day.

  Sophie was keen to introduce me to her friend, John. They had just spent a year in Moscow together.

  ‘You’ll really like him,’ she said. ‘He’s just like you.’

  His house had fallen through, so we invited him to stay on our sofa until he got sorted. He had lots of good stories about Russia – the huge cockroaches, how difficult it was to buy food, how he’d travelled around with a Russian MP and been taught to shoot at a firing range.

  ‘Must have been a proper culture shock,’ I said. ‘Much more exciting than my few months in Normandy.’

  ‘That’s because I’m so windswept and interesting,’ he said. ‘I think you should fall in love with me.’

  We started seeing each other, but I knew I had to tell him about Matty if I wanted him to really know me. I dithered over it for ages as I was enjoying feeling like a normal person and didn’t want to introduce gloom into this exciting new relationship. But one night, after several drinks at our kitchen table, I said I needed to tell him something.

  ‘Oh God,’ he said, ‘I knew you were too good to be true. You’ve got a “thing”, haven’t you?’

  ‘What?’

  ‘Every girl I’ve ever gone out with has had some shitty secret, some melodrama. Come on then, what’s yours?’

  I hated him in that moment. ‘Just fuck off,’ I said.

  ‘No, go on. Tell me – we might as well get it over with. I’ve known all along you’ve been gagging to tell me something.’

  I stared at him. I wanted him to leave.

  ‘What is it? Did your French teacher like you a bit too much? Are you not over your parents’ divorce? Did one of your best friends have sex with you and then not talk to you again?’

  ‘OK,’ I said. ‘My brother was knocked down by a car when he was sixteen and I was seventeen. He’s in a Persistent Vegetative State, which means he has periods of wake and sleep but nothing else. His brain is completely fucked. My dad and I want him to die and are thinking about applying to the courts, but my mum says she’s not ready. That’s my thing.’

  I was crying now. ‘I loved him. I love him. That’s my thing.’

  ‘Fuck. I’m sorry. I’m so sorry. Come here,’ he said.

  We got drunk and I cried all night. And from that time on, John and I were inseparable.

  My parents adored John from the off and he settled easily into pub life, coming home with me most weekends.

  We took him to a darts finals night at a working men’s club in Goole which deteriorated into a fist-fight on the stage when one of the younger players mooned and the MC took exception and lamped him.

  ‘It’s another kind of culture shock, isn’t it?’ I said to John. His eyes were out on stalks, but he took it all in his stride.

  I fared less well in his milieu. I tended to treat all grown-ups as though they were customers at the pub, which didn’t suit a lot of people. I didn’t know how to behave like a nice middle-class boy’s girlfriend. At a dinner at Chester golf club, the man next to me asked in a very posh voice if I played golf.

  ‘No.’

  ‘Do you play bridge?’

  ‘No.’

  There was a long silence, which I broke by telling him I played darts.

  ‘How very unusual,’ he said, before turning to his other side for the rest of the meal.

  Over the course of that last year, Mum and Dad came to Leeds a lot. Often I’d take John or Sophie with me to meet them for lunch and we’d spend the time laughing and joking.

  One day, Mum suggested I come alone so that we could all talk about Matty. I went to meet them off the train and we walked to Jumbo, a Chinese restaurant in the city centre. It had no windows, and I liked the way that, in winter, we’d go in during daylight and come out a few hours later to be surprised by the dark
.

  ‘I’ve been thinking a lot,’ Mum said. ‘I’m grateful to you both for letting me have the time, and now I can see it’s not right to leave Matty like that. We need to be brave and take action. It’s our responsibility.’

  This felt like a huge step. We discussed what to do next.

  ‘I still can’t bear the thought of it,’ I said. ‘I see the legal reasons why it has to be a withdrawal of treatment rather than an intervention, but it seems so cruel and uncivilized.’

  We all agreed. We believed it was best for Matty to die, but still hoped that his life might end naturally. The staff at the nursing home were aware of our wishes and now wouldn’t use antibiotics to treat any infection, but time marched on, and despite having several bouts of illness, Matty always survived. We were in limbo.

  I graduated in the summer of 1996 and we had a party in the bungalow to celebrate. There was lots of champagne and one of the ladies from the darts team who usually only drank Diet Coke walked smack into the French windows. She wasn’t hurt and everyone laughed and carried on letting their hair down.

  Later on in the evening, I was sitting outside on a bench with one of my favourite customers, who was a bit of a rogue, when he said, ‘You’ve got amazing parents. Maybe I’d have been able to make something of my life if I’d had parents like yours.’

  I knew that I was lucky. I decided to try from then on to focus on that good fortune, to count my blessings and spend less time breaking my heart over Matty. But it wasn’t easy.

  After graduating, I started working full time at the pub. It was supposed to be temporary – John had moved to London and I was going to join him – but I started to get ill. The doctor said I had irritable bowel syndrome. It was painful and embarrassing and, when I had a flare-up, I couldn’t go anywhere as I needed to be near a toilet.

  One evening there was a horrible scene in the pub after I barred someone who was dealing drugs. He’d come back at the end of the night and threatened to smash all the windows, told me I’d never be safe, that he’d find a way of getting to me. I’d thought I was used to the darker side of the pub, but I was feeling ground down by the fighting and the threats, and was discussing it with my parents in the bungalow the next day when I started to shake. Pretty soon I was gasping for breath and my entire body was twitching – I had no control over it and I was terrified. My parents were worried but calm. They didn’t like to think of me suffering, but looking after Matty had taught them how to cope with anything – this wasn’t a big deal in comparison.

  When it subsided, I went to sleep right there on the sofa in the bungalow for several hours. Mum made me an appointment at the doctor’s and I was sent off for tests. It started to happen whenever I was upset or scared, and no one seemed to have a clue as to why. I told Sophie about it over the phone and she asked her dad what he thought. He said it sounded psychosomatic, that I might be having panic attacks and that the lack of oxygen was what was making me shake.

  It was hard to accept that I was doing this to myself, but it sounded right. Mum suggested I go back and see Jane, and I did, every week, for a few months. The panic attacks became much less frequent, and I could usually head them off by practising the breathing techniques Jane taught me. She also thought my bowel problems were psychological. Her theory was that I felt guilty about the plan to move to London and abandon my family, so my mind and body were conspiring to keep me at home by making me too ill to leave.

  Jane and I talked a lot about how difficult it was to deal with the knowledge that I wanted Matty to die. I knew it was the best thing for him, but I also wanted it for me. I wanted to be free from worry about him, and that made me feel unbearably guilty.

  One night, as were picking our darts team, Carol said, ‘Cora might not make it, and even if she does, she won’t be in the mood for playing. She was burying her brother this morning.’

  Cora was an elegant woman who wore cream silk blouses and drank halves of lager with lime. I imagined her standing on a mound of earth with a shovel in her hand and started laughing. All the ladies looked at me.

  ‘I’m sorry,’ I said. ‘I was, you know, thinking of Cora with a shovel.’

  They were still looking at me.

  ‘You know, burying,’ I said. ‘I know it’s not funny.’ I was still laughing.

  ‘Well,’ said Carol, pursing her lips. She was very fond of me but I could see I had pushed her too far. ‘You’d better not still be laughing if she comes in.’

  I calmed down, we picked a team, and the evening continued. I can’t remember the details – whether we beat the Black Lion 5-2 or got thrashed 6-1 by the Oddfellows – but there would have been seven games. We’d have cheered each other on by saying ‘good arrows’, and if the opposing player got a poor score, then we’d have said ‘fill your boots’ or ‘dip your bread’ to encourage our player to make the most of that moment of weakness. If anyone got stuck on double one – highly likely – they would have been told to ‘think it’s a field’. I’d have kept score, standing next to the board saying, ‘OK, these go, game on,’ and then calling out the totals and subtracting them on our electronic chalkie. We’d have done a raffle and handed round sandwiches. There might have been a corned-beef-and-pickle pie, a speciality of the player who had walked into the French windows at my graduation party. I would certainly have drunk a lot – pints of lager or Guinness or Moscow mules straight from the bottle. I would have smoked lots of cigarettes. I would probably have won my game because I usually did. So whilst there’s much I can’t remember, I do know that my laughter cloaked the extreme envy I felt for Cora. At that moment I had realized how desperate I was to bury my brother.

  John was working as a recruitment consultant in emerging markets, and was living in London, in Rotherhithe, and either he would travel up at the weekends, or I would travel down to see him mid-week, setting off in the dead of night when I’d finished my shift behind the bar. One such night I got horribly lost coming into London and ended up in East Ham. After that, John bought me my first mobile phone. It had a contract for twelve months, which he said showed the level of his commitment to me. I knew he was thinking of proposing. He really wanted children, and I wasn’t sure about it, but had said I could probably imagine having them when I was thirty.

  One Friday, Dad and I picked John up from Leeds airport. He’d flown back from Kazakhstan via Frankfurt and Heathrow after a difficult trip during which he’d been threatened by a Kazak mafia person, so he’d started drinking on the plane and we decided to carry on.

  Later that night he dragged me into the back kitchen and sat me down on a big, black speaker that had been left by one of the bands.

  ‘Put down your cigarette,’ he said, so I put it on the speaker. He put his down on his mobile phone.

  He went down on one knee.

  ‘Will you marry me?’

  I wasn’t sure I was wife material, but I loved him.

  ‘Of course I will,’ I replied.

  The smell of burning plastic filled the air as my cigarette started to burn the speaker and his burnt into his phone, and then we went into the pub to tell everyone the news. No one was surprised.

  ‘I’ve seen it for a long time,’ said Carol. ‘You two are made for each other.’

  Mum and Dad were delighted. Dad wanted us to get married straightaway, but I said I couldn’t think of it while Matty was still alive.

  1996 turned into 1997 and we decided that at last we must steel ourselves to apply to the court. We enlisted the help of our family solicitor Drummond Maxton, one half of Elmhirst and Maxton, a firm of Selby solicitors. He had overseen the purchase of our first house in Yorkshire in 1978, then the pub in 1989, and over the years had drawn up wills and offered advice. He was due to retire but said he wanted to help us, and would like to take this on as one of his last cases.

  We told hardly anyone, only a tiny handful of Matty’s friends, all of whom agreed it was the right thing to do. Everyone we did tell was always extremely supportive, but s
till we felt we had to be secretive. Dad’s family were all Catholic so we assumed they would be against it on principle, and Mum was terrified that if people got to know, a band of religious protesters would turn up with placards and camp outside the door. We knew this had happened with Tony Bland, that a priest had tried to stop the withdrawal of nutrition going ahead.

  We hated the idea of having to discuss it, explain it or justify it to all comers, who might only ask questions when pissed in the pub and not bother to listen to the answers. We didn’t want it to be a topic of conversation, either at our bar or at any of the others in the area. After years of believing that where there was life, there was hope, we didn’t want to have to try to explain how we’d changed our minds to people who hadn’t travelled our hard road.

  We had told Mr McEnroe that if the court agreed to our wishes, we intended to bring Matty home from Snaith Hall so neither he nor any of the staff would have to be involved. We asked him to tell no one.

  Matty’s was the fourteenth case of its kind to go before the court and the first ever to be taken by the family rather than the health authority. Because it was a court case there had to be a plaintiff and a defendant, so in legal terms it was Mum and Dad against Matty. It felt horrible. The Court of Protection appointed someone to act on Matty’s behalf, and doctors came from ‘both sides’ to assess his condition. Mum had to write and swear an affidavit. Dad was still not very good at writing – he could manage shopping lists but with jumbled-up lower- and upper-case letters, he didn’t have much idea about punctuation, and he wouldn’t have been able to formulate his thoughts into written words. His affidavit simply said that he’d read his wife’s and agreed.

  I had to write my own and for the first and only time I felt a flicker of envy for my dad’s lack of letters. I was supposed to be good at writing, but spent ages staring at the blank page. I tried to give myself a pep talk. It’s only words, I thought. You only have to find some words – this isn’t the hardest thing. Surely this is nothing compared with having to ring Mum from Pontefract, having to watch Matty fit, having to witness his bursting lung at Killingbeck, having to think of his vacant eyes staring out of his twisted body up at Snaith Hall. Surely this is nothing compared with the gradual erosion of hope. But it was hard. It felt wrong. Nothing in my life had prepared me for the task of having to write down that I wanted my brother to die.