by Jane Asher
Sophie carried the two half-pints of beer over to the table in the corner of the pub and pushed Robbie’s wheelchair out of the way with one hip as she put them down.
‘There,’ she said with a smile, ‘I told you it wouldn’t take me so long this time. They’re getting to know me now. I’m not being quite so ignored.’
‘Cheers,’ Robbie said as he took a sip of beer, then smacked his lips and leant forward to put the glass down again. ‘So what’s tonight’s discussion? Do we continue the story of Sophie’s extraordinary family setup, or do we explore the complications of being in a wheelchair?’
‘Yes, let’s do that,’ Sophie smiled. ‘Tell me your complications. I’d like to know.’
‘Getting trousers on and off. Very tricky.’
‘Uh huh. Yes, yes I can see that.’
‘Changing the bulbs in ceiling lights. Extremely tricky.’
Sophie spluttered into her beer, and slopped some of it over the edge of the glass. ‘Oh God – don’t make me laugh again. You always do that when I’m just taking a drink.’
‘I’m hoping to get your shirt so wet that I can see your nipples.’
‘I see. Well, there are easier ways.’
‘Sophie!’ Robbie opened his eyes in mock surprise. ‘Miss Sophie, I’m surprised at you!’
‘Why are you so horrible about my name? There’s nothing so particularly wonderful about Robbie, but I don’t keep on sending you up about it. It’s really childish.’
‘Sorry. Don’t take it so seriously. I don’t know – it just doesn’t seem really you, somehow. Doesn’t really seem to suit you.’
Sophie looked at him in as much genuine astonishment as he had been pretending earlier.
‘That’s absolutely extraordinary. Really amazing.’
‘Why?’
‘That’s just extraordinary.’
‘What are you on about?’
‘Sophie’s not my real name.’
‘So?’
‘No, I mean I’ve only been called Sophie for a few months. My real name is Susan.’
‘Wait a minute, I don’t get this. I don’t understand. Do you mean you’ve changed your name? Why? What for?’
‘It’ll sound really silly, but – you know the aunt I told you about who isn’t my aunt at all?’
‘Yeah.’
‘She asked me to. She was really kind to me, and helped me to – well, all sorts of things. She bought me clothes and stuff; took me places. Taught me which words not to use, things like that. Showed me things, explained things to me. And she didn’t like me being called Susan. So she asked if I minded changing it to Sophie.’
‘No! You’re kidding.’
‘No, I’m not.’
‘That’s truly weird. She sounds like a snobbish old bitch to me. Taught you what words not to use – what the hell’s that all about? And what was wrong with Susan? It’s not the prettiest of names, I have to say, but it’s a lot more you than Sophie. And what did your mother say? How did she feel about you changing the name she’d given you? Didn’t she mind?’
‘She didn’t really have a say. We don’t always – get on very well.’
‘Bloody hell, I’d have something to say if my kid started calling herself by some poncy new name!’
‘Oh it’s not poncy; you’ve got a real thing about it. You’re the snobbish one. What does it matter what name I use, anyway?’
‘Well, it’s just sort of strange. It must be weird enough for your mum having this other woman hanging about the place, let alone you changing your name to suit the old bird.’
‘Yes. Yes, I suppose it must. I didn’t really think about that much.’
‘Anyway, I’m going to call you Susie. Just to screw you up even more. OK?’
‘OK,’ Susie laughed.
‘Now, Susie, tell me what your plans are for me seeing your nipples without wasting all the beer?’
Susie looked down at her glass for a moment, then raised her eyebrows and smiled up at him without raising her head. ‘Robbie, I’ve told you so much about myself. About my father and everything. Can I ask you something?’
‘What?’
‘You won’t get angry with me?’
‘How do I know if I don’t know what you’re going to ask me? But I doubt it. I’m not an angry sort of person.’
Susie glanced around the pub for a moment, then leant forward and rested a hand on Robbie’s knee as she spoke quietly. ‘Can you do it?’
He smiled and looked at her for a second before speaking. ‘I thought that’s what it was. Well, now, how shall I answer that?’
‘Just tell me. Or if you’d rather not, then—’
‘Yes.’
‘What, yes, you’d rather not tell?’
‘No – yes. Yes, I can. And just for that I shall prove it to you.’
Susie gave a little shiver and reached for another sip of beer.
‘But there’s lots of poor devils in that hospital that can’t, I can tell you,’ Robbie went on. ‘There’s a dear old thing there – very disabled, very twisted. Always has been. Hard to understand what she says, but I’ve got used to her. She’s always been in homes and things. She’s lived there – in the hospital – for years. And she’s never had it. The most exciting thing that happened to her was when one of the porters felt her up. Mucked about with her breasts a bit.’
‘That’s awful!’ said Susie.
‘No it’s not. Not when that’s all you’ve got. And then he went and now she’s got nothing. And she’ll never know what it’s like. Doing it.’
‘That’s so sad. Can’t they do something?’
‘What can they do? She told me she tried to persuade another guy in a chair – not so bad as she is – to try and tip them both over onto the floor so they could try, but of course it didn’t work. They both just had to lie there until someone found them. There’s lots of people in there like her – that can’t get it, I mean. I’ve got a couple of mates about my age. They’re really bad. Won’t get out of there, you see. They live in there, and they’re desperate. One of them asked one of the nurses to help him bring himself off and—’
‘Oh, that’s horrible! He shouldn’t have done that, surely?’
‘Why not? It’s easy for you – you can do it whenever you like. Make yourself come, I mean. Imagine how you’d feel if you couldn’t—’
‘Yes, all right, all right. I get the point. That’s so sad.’
‘One of them talked to one of the doctors once. He was good – understanding. They talked about how other countries do it. Love houses, or something. But there’s nothing he can do. If he brought in a tart he’d be pimping. Not legal. So my mates will probably die without ever having it.’
Sophie put down her beer and reached out a hand to touch Robbie’s knee.
‘Aren’t we lucky?’ she said, looking at him seriously, straight in the eye.
‘Yeah,’ he answered, putting his hand over hers. ‘Aren’t we just?’
Chapter Nineteen
‘What is yes?’
Rae and Eleanor watched John’s drooling face closely. It showed nothing – no strain, no confusion, no pleasure, no recognition. But after a couple of seconds the side of his right thumb could be seen to make the tiniest of pushes on the metal flange which Rae held firmly against it. A single bleep slivered into the quietness of the room.
‘And what is no?’
Again the pause. Rae leant forward and wiped John’s mouth with a crumpled tissue held in her free hand. Eleanor looked again into his face, which remained as blank and immobile as before.
Two bleeps sounded clearly and distinctly.
‘Again, John, what is no?’
Pause. Two bleeps.
‘And what is yes?’
Pause. One bleep.
‘Are you Edward?’ Two bleeps.
‘Are you John?’ One bleep.
Eleanor could feel her heartbeat step up a little with every bleep. She felt a confusing mixture of fear and el
ation; unsure what this proof of the breakthrough might mean to her, but mesmerised by the drama and tension of what was taking place.
Rae dropped the wet tissue into a metal basin on the table beside the wheelchair, put her hand over John’s and rubbed it gently.
‘Is this your leg, John?’ Two bleeps. ‘Is it your head?’ Two bleeps. Rae glanced across at Eleanor with a small smile of – what? Triumph? Excitement? Then she turned back to John.
‘John, is it your hand?’
One bleep.
‘Good, John. Very good. All right, let’s take a rest now. You’ve done quite enough for today. We’ll have another go tomorrow, and I might try the alphabet board again, too. Well done, John. That’s marvellous.’
As Rae took the bleeper gently from John’s lap and stood up to put it away in the small black briefcase, she smiled again at Eleanor.
‘You see, Eleanor? You see why I’m so pleased? There is no question now that John is understanding me. I’ve had these sort of consistent reactions for several sessions now, and he has shown quite clearly that he understands everything I ask him.’ She bent down to look into John’s face as she spoke to him. ‘You do, John, don’t you? We’re doing very well. Very well indeed. John, I want you to rest now. One of the nurses will be here in a minute to tidy you up and get you into bed. We’ve done very well this afternoon. I’ll see you tomorrow.’
Eleanor gave John a gentle pat on his shoulder and then followed Rae as she walked out of the room.
‘Should I – can I talk to him now? Ask him things? Make sure he’s all right? What should I say to him?’
‘Come into the OT room for a moment.’
She ushered Eleanor into the small room and gestured to her to sit down in front of the desk, while she put the briefcase away on a shelf next to the window. ‘Let me have two or three more sessions with him before I leave you on your own, Eleanor. This must be an enormous strain for him and I want to get him as much at ease with the buzzer as possible before I involve you. It’s going to be very emotional for him to be able to “talk” directly to you.’
She moved to behind the desk and sat down, gathering some papers that were scattered on its surface and piling them neatly to one side.
‘How long do you think he’s been aware of what’s going on?’ Eleanor asked. ‘Do you think he’s been able to understand everything we say? All the time?’
‘I’m really not certain. We did have one client – one of the ones wrongly diagnosed as PVS that I told you about – he’d been in that condition for eight years when he came here. Eight years – extraordinary, isn’t it? And he told us things that made it quite clear he’d known exactly what had been going on for at least three or four years. He knew things that he could only have known by being able to hear and understand for all that time.’
‘How do you know? I mean, how did you find all that out?’
‘By using the alphabet board. The one I’m just starting to try with John. I simply point to the letters one by one and the client gives a single beep when I reach the one he wants. And if the client has no vision, which I fear at the moment may be the case with John, then I say the letters out loud and he beeps when I reach the one he wants. But we’re a long way off that with John, Eleanor. I don’t want you to get your hopes up too high.’
‘No, of course not. I understand.’
Eleanor glanced up at the notice board behind the desk.
‘Rae, can I ask you something? About that young man – the one with his parents in the picture?’
Rae twisted round and looked at the cutting behind her. After a moment she smiled back towards Eleanor.
‘Keith. Yes, of course. Anything.’
‘What was the question? The one they didn’t dare ask?’
Rae stood up and turned to take down the cutting from the board.
‘Here,’ she said, passing it across the desk. ‘Read it. Not an uncommon problem, I’m afraid.’
Eleanor quickly scanned the small piece of newspaper until she found the paragraph she wanted.
‘He’s very cheerful,’ David’s mother and father said from his bedside. ‘We make jokes about the pretty nurses and his bleeper goes like mad. He’s still got his sense of humour. But there’s one question we just daren’t ask him. We don’t really want to know you see. Whether he wants to live or not. We just daren’t ask him that.’
‘Oh God,’ said Eleanor. ‘How ghastly. What an awful thought.’
‘Yes. These things aren’t easy. It will be tough for you, Eleanor. But I’m sure you’re able to cope. I don’t think I need to tread carefully with you, do I? You’re very strong, and I don’t want to keep anything from you. I think if you are aware of all the possibilities then you’ll be more prepared for some of the – the difficult times that may be ahead. We had one poor therapist here who worked with a young man for many months – he was only nineteen. She got him using the bleeper very successfully, and then moved on to the alphabet board. I’m afraid the first thing he spelt out was “Please kill me.” And the second. And the third. It was very distressing for her.’
‘Yes. Poor thing. How awful. And for him. Trapped. Inside. But you couldn’t do anything, could you? I mean, even if it became absolutely clear that the person really couldn’t stand it, really didn’t want to live any more, you couldn’t stop the food or whatever it is, could you?’
‘No, no, of course not. Absolutely not. It’s only in cases like the poor Hillsborough boy, when it’s completely clear that there is no awareness whatsoever, that the client truly is in a vegetative state, and only when that has been continuing for a number of years, only then can any sort of decision be considered. And I must say, I feel more doubtful all the time about when and if that can truly be said to be definitive. Think of our eight-year vegetative patient. He told us that he had actually heard the doctors and family discussing stopping his nutrition several times during the years before we got through to him. Just imagine that. And he most certainly wanted to live – he was quite definite about that from the first moment he “talked” to us.’
Susie was sitting on Robbie’s lap in the large armchair. She stroked his hair with one hand and then bent to kiss him gently on the lips. He pulled back a little and looked at her. ‘What is it, babe? You’re not right, are you? Why are you so quiet? Come on, tell me what the matter is.’
She looked around his small bedsitting room and marvelled, not for the first time, at its neatness. ‘God, Robbie, you’re so tidy. How do you manage to keep it looking like this, especially in a wheelchair? You’re amazing.’ She sighed and rested her head on his shoulder. ‘It’s my dad. He’s not a vegetable after all, Robbie. He can understand things. He can feel things. It’s so strange.’
‘That’s great! It’s brilliant, isn’t it? Why aren’t you happy?’
‘I just can’t bear to think that he knows what he’s like. I mean, he can’t move – just imagine that? Imagine what it must be like. He can’t do anything – anything. He just has to lie there until someone does something to him. Or asks him a question. It’s unbearable. All the time – right now, while I’m making love to you, or watching television with you, or going shopping, or eating, anything – he’s just lying there. They don’t think he can even see. Robbie – God, it’s awful – just imagine lying there in the dark, and you can’t do anything.’
‘But you can’t know what it’s like for him, Susie. It’s like me in a way. Before you really knew me you felt sorry for me, didn’t you? In the wrong sort of way. You couldn’t imagine that my life could ever be as good as yours, or as complete as yours, could you?’
‘No, I know, but that’s different.’
‘No it isn’t. Not really. It’s all about you judging everything from your point of view.’
‘Well, of course I do. How else could I? I’m bound to judge it from my point of view.’
‘But you’ve got to see that you can’t know what someone else’s point of view might be. Yes, if you – you the
way you think and feel now, I mean – were suddenly trapped inside a body that couldn’t move or see and all that, then of course you’d find it unbearable. But he’s not the old dad trapped inside that body, is he? He’s someone different. If you were suddenly put in a wheelchair for the rest of your life with only one arm that worked properly, you’d find that pretty unbearable, too, wouldn’t you? Or at least you think you would – you think you’d be fucking miserable, don’t you? But you know I’m not, now. You believe I’m as complete a person because this is me, every bit of it. You believe I’m completely Robbie, just like this. So maybe your dad’s complete the way he is now. Who’s to say?’
‘But that’s different. You’ve always been like you are. He remembers what it’s like to be—’
‘How do you know that? You don’t. Remember, I’ve had years of hospitals, doctors and all that. I’ve seen people in the most terrible state – in ways you wouldn’t think anyone would want to go on for a minute. But they do.’
‘I just can’t believe he’s not suffering. He has no quality of life like that. It just can’t be worth living, being shut in like that. It’s horrible.’
‘But who are we to judge his quality of life, as you put it? Why should our lives be any more important? When we run around doing our little important things, my music or your job interviews or shopping, or stuffing food in our mouths or washing or reading newspapers or getting dressed or driving the car or paying bills or reading books or whatever, how can we say they bring us a better quality of life than he has? What exactly is it in any of those things that’s so important that his life isn’t worth living without it? Or is it sex? Is that what you think he needs to have a reason to live? What about all those nuns and things who’ve given all that up? To be more spiritual and things? Maybe your dad feels more than any of us; maybe he experiences life in a really kind of intense way. Who are we to say he doesn’t? If he can hear a bit of music, or something read to him from a book that really means something to him, or feel you touching him, then who’s to say that doesn’t mean more to him than all our rushing around doing all the stupid things we do all the time? His world has got really tiny. It’s shrunk; but it doesn’t mean it’s not as important as the world we live in. What about all that stuff about atoms?’
