after four o’clock that afternoon by an observer who had witnessed the whole thing, alongside a video camera there to forestall any suggestion of wrongdoing.
‘He looked at peace,’ his mother was quoted as saying. ‘It’s the only thing I can hold on to.’
She and Leo’s father had been interviewed three times by police and faced the threat of prosecution. Hate mail had been posted to their house. She looked almost twenty years older than her given age. And yet, there was something else in her expression when she spoke; something that, alongside the grief and the anger and the anxiety and exhaustion, told of a deep, deep relief.
‘He finally looked like Leo again.’
15
‘So come on, then, Clark. What exciting events have you got planned for this evening?’
We were in the garden. Nathan was doing Will’s physio, gently moving his knees up and down towards his chest, while Will lay on a blanket, his face turned to the sun, his arms spread out as though he was sunbathing. I sat on the grass alongside them and ate my sandwiches. I rarely went out at lunchtime any more.
‘Why?’
‘Curiosity. I’m interested in how you spend your time when you’re not here.’
‘Well … tonight it’s a quick bout of advanced martial arts, then a helicopter is flying me to Monte Carlo for supper. And then I might take in a cocktail in Cannes on the way home. If you look up at around – ooh – around 2am, I’ll give you a wave on my way over,’ I said. I peeled the two sides of my sandwich apart, checking the filling. ‘I’m probably finishing my book.’
Will glanced up at Nathan. ‘Tenner,’ he said, grinning.
Nathan reached into his pocket. ‘Every time,’ he said.
I stared at them. ‘Every time what?’ I said, as Nathan put the money into Will’s hand.
‘He said you’d be reading a book. I said you’d be watching telly. He always wins.’
My sandwich stilled at my lips. ‘Always? You’ve been betting on how boring my life is?’
‘That’s not a word we would use,’ Will said. The faintly guilty look in his eyes told me otherwise.
I sat up straight. ‘Let me get this straight. You two are betting actual money that on a Friday night I would either be at home reading a book or watching television?’
‘No,’ said Will. ‘I had each way on you seeing Running Man down at the track.’
Nathan released Will’s leg. He pulled Will’s arm straight and began massaging it from the wrist up.
‘What if I said I was actually doing something completely different?’
‘But you never do,’ Nathan said.
‘Actually, I’ll have that.’ I plucked the tenner from Will’s hand. ‘Because tonight you’re wrong.’
‘You said you were going to read your book!’ he protested.
‘Now I have this,’ I said, brandishing the ten-pound note. ‘I’ll be going to the pictures. So there. Law of unintended consequences, or whatever it is you call it.’
I stood up, pocketed the money, and shoved the remains of my lunch into its brown paper bag. I was smiling as I walked away from them but, weirdly, and for no reason that I could immediately understand, my eyes were prickling with tears.
I had spent an hour working on the calendar before coming to Granta House that morning. Some days I just sat and stared at it from my bed, magic marker in hand, trying to work out what I could take Will to. I wasn’t yet convinced that I could get Will to go much further afield, and even with Nathan’s help the thought of an overnight visit seemed daunting.
I scanned the local paper, glancing at football matches and village fêtes, but was afraid after the racing debacle that Will’s chair might get stuck in the grass. I was concerned that crowds might leave him feeling exposed. I had to rule out all horse-related activities, which in an area like ours meant a surprising amount of outdoor stuff. I knew he wouldn’t want to watch Patrick running, and cricket and rugby left him cold. Some days I felt crippled by my own inability to think up new ideas.
Perhaps Will and Nathan were right. Perhaps I was boring. Perhaps I was the least well-equipped person in the world to try to come up with things that might inflame Will’s appetite for life.
A book, or the television.
Put like that, it was hard to believe any differently.
After Nathan left, Will found me in the kitchen. I was sitting at the small table, peeling potatoes for his evening meal, and didn’t look up when he positioned his wheelchair in the doorway. He watched me long enough for my ears to turn pink with the scrutiny.
‘You know,’ I said, finally, ‘I could have been horrible to you back there. I could have pointed out that you do nothing either.’
‘I’m not sure Nathan would have offered particularly good odds on me going out dancing,’ Will said.
‘I know it’s a joke,’ I continued, discarding a long piece of potato peel. ‘But you just made me feel really crap. If you were going to bet on my boring life, did you have to make me aware of it? Couldn’t you and Nathan just have had it as some kind of private joke?’
He didn’t say anything for a bit. When I finally looked up, he was watching me. ‘Sorry,’ he said.
‘You don’t look sorry.’
‘Well … okay … maybe I wanted you to hear it. I wanted you to think about what you’re doing.’
‘What, how I’m letting my life slip by … ?’
‘Yes, actually.’
‘God, Will. I wish you’d stop telling me what to do. What if I like watching television? What if I don’t want to do much else other than read a book?’ My voice had become shrill. ‘What if I’m tired when I get home? What if I don’t need to fill my days with frenetic activity?’
‘But one day you might wish you had,’ he said, quietly. ‘Do you know what I would do if I were you?’
I put down my peeler. ‘I suspect you’re going to tell me.’
‘Yes. And I’m completely unembarrassed about telling you. I’d be doing night school. I’d be training as a seamstress or a fashion designer or whatever it is that taps into what you really love.’ He gestured at my minidress, a Sixties-inspired Pucci-type dress, made with fabric that had once been a pair of Granddad’s curtains.
The first time Dad had seen it he had pointed at me and yelled, ‘Hey, Lou, pull yourself together!’ It had taken him a full five minutes to stop laughing.
‘I’d be finding out what I could do that didn’t cost much – keep-fit classes, swimming, volunteering, whatever. I’d be teaching myself music or going for long walks with somebody else’s dog, or –’
‘Okay, okay, I get the message,’ I said, irritably. ‘But I’m not you, Will.’
‘Luckily for you.’
We sat there for a bit. Will wheeled himself in, and raised the height of his chair so that we faced each other over the table.
‘Okay,’ I said. ‘So what did you do after work? That was so valuable?’
‘Well, there wasn’t much time left after work, but I tried to do something every day. I did rock climbing at an indoor centre, and squash, and I went to concerts, and tried new restaurants –’
‘It’s easy to do those things if you have money,’ I protested.
‘And I went running. Yes, really,’ he said, as I raised an eyebrow.
‘And I tried to learn new languages for places I thought I might visit one day. And I saw my friends – or people I thought were my friends … ’ He hesitated for a moment. ‘And I planned trips. I looked for places I’d never been, things that would frighten me or push me to my limit. I swam the Channel once. I went paragliding. I walked up mountains and skied down them again. Yes –’ he said, as I made to interrupt ‘– I know a lot of these need money, but a lot of them don’t. And besides, how do you think I made money?’
‘Ripping people off in the City?’
‘I worked out what would make me happy, and I worked out what I wanted to do, and I trained myself to do the job that would make those two things happen.’
‘You make it sound so simple.’
‘It is simple,’ he said. ‘The thing is, it’s also a lot of hard work. And people don’t want to put in a lot of work.’
I had finished the potatoes. I threw the peel into the bin, and put the pan on to the stove ready for later. I turned and lifted myself on my arms so that I was sitting on the table facing him, my legs dangling.
‘You had a big life, didn’t you?’
‘Yeah, I did.’ He moved a bit closer, and raised his chair so that he was almost at eye level. ‘That’s why you piss me off, Clark. Because I see all this talent, all this … ’ He shrugged. ‘This energy and brightness, and –’
‘Don’t say potential …’
‘ … potential. Yes. Potential. And I cannot for the life of me see how you can be content to live this tiny life. This life that will take place almost entirely within a five-mile radius and contain nobody who will ever surprise you or push you or show you things that will leave your head spinning and unable to sleep at night.’
‘This is your way of telling me I should be doing something far more worthwhile than peeling your potatoes.’
‘I’m telling you there’s a whole world out there. But that I’d be very grateful if you’d do me some potatoes first.’ He smiled at me, and I couldn’t help but smile back.
‘Don’t you think –’ I started, and then broke off.
‘Go on.’
‘Don’t you think it’s actually harder for you … to adapt, I mean? Because you’ve done all that stuff?’
‘Are you asking me if I wish I’d never done it?’
‘I’m just wondering if it would have been easier for you. If you’d led a smaller life. To live like this, I mean.’
‘I will never, ever regret the things I’ve done. Because most days, if you’re stuck in one of these, all you have are the places in your memory that you can go to.’ He smiled. It was tight, as if it cost him. ‘So if you’re asking me would I rather be reminiscing about the view of the castle from the minimart, or that lovely row of shops down off the roundabout, then, no. My life was just fine, thanks.’
I slid off the table. I wasn’t entirely sure how, but I felt, yet again, like I’d somehow been argued into a corner. I reached for the chopping board on the drainer.
‘And Lou, I’m sorry. About the money thing.’
‘Yeah. Well.’ I turned, and began rinsing the chopping board under the sink. ‘Don’t think that’s going to get you your tenner back.’
Two days later Will ended up in hospital with an infection. A precautionary measure, they called it, although it was obvious to everyone that he was in a lot of pain. Some quadriplegics had no sensation but, while he was impervious to temperature, below his chest Will could feel both pain and touch. I went in to see him twice, bringing him music and nice things to eat, and offering to keep him company, but peculiarly I felt in the way, and realized quite quickly that Will didn’t actually want the extra attention in there. He told me to go home and enjoy some time to myself.
A year previously, I would have wasted those free days; I would have trawled the shops, maybe gone over to meet Patrick for lunch. I would probably have watched some daytime television, and maybe made a vague attempt to sort out my clothes. I might have slept a lot.
Now, however, I felt oddly restless and dislocated. I missed having a reason to get up early, a purpose to my day.
It took me half a morning to work out that this time could be useful. I went to the library and began to research. I looked up every website about quadriplegics that I could find, and worked out things we could do when Will was better. I wrote lists, adding to each entry the equipment or things I might need to consider for each event.
I discovered chat rooms for those with spinal injuries, and found there were thousands of men and women out there just like Will – leading hidden lives in London, Sydney, Vancouver, or just down the road – aided by friends or family, or sometimes, heartbreakingly alone.
I wasn’t the only carer interested in these sites. There were girlfriends, asking how they could help their partners gain the confidence to go out again, husbands seeking advice on the latest medical equipment. There were advertisements for wheelchairs that would go on sand or off-road, clever hoists or inflatable bathing aids.
There were codes to their discussions. I worked out that SCI was a spinal cord injury, AB the able-bodied, a UTI an infection. I saw that a C4/5 spinal injury was far more severe than a C11/12, most of whom still seemed to have use of their arms or torso. There were stories of love and loss, of partners struggling to cope with disabled spouses as well as young children. There were wives who felt guilty that they had prayed their husbands would stop beating them – and then found they never would again. There were husbands who wanted to leave disabled wives but were afraid of the reaction of their community. There was exhaustion and despair, and a lot of black humour – jokes about exploding catheter bags, other people’s well-meaning idiocy, or drunken misadventures. Falling out of chairs seemed to be a common theme. And there were threads about suicide – those who wanted to, those who encouraged them to give themselves more time, to learn to look at their lives in a different way. I read each thread, and felt like I was getting a secret insight into the workings of Will’s brain.
At lunchtime I left the library and went for a brief walk around town to clear my head. I treated myself to a prawn sandwich and sat on the wall watching the swans in the lake below the castle. It was warm enough for me to take off my jacket, and I let my face tilt towards the sun. There was something curiously restful about watching the rest of the world getting on with its business. After spending all morning stuck in the world of the confined, just being able to walk out and eat my lunch in the sun felt like a freedom.
When I had finished, I walked back to the library, reclaimed my computer terminal. And I took a breath and typed a message.
Hi – I am the friend/carer of a 35 yo C5/6 quadriplegic. He was very successful and dynamic in his former life and is having trouble adjusting to his new one. In fact, I know that he does not want to live, and I am trying to think of ways of changing his mind. Please could anyone tell me how I could do this? Any ideas for things he might enjoy, or ways I could get him to think differently? All advice gratefully received.
I called myself Busy Bee. Then I sat back in my chair, chewed at my thumbnail for a bit, and finally pressed ‘Send’.
When I sat down at the terminal the next morning, I had fourteen answers. I logged into the chat room, and blinked as I saw the list of names, the responses which had come from people worldwide, throughout the day and night. The first one said:
Dear Busy Bee,
Welcome to our board. I’m sure your friend will gain a lot of comfort from having someone looking out for him.
I’m not so sure about that, I thought.
Most of us on here have hit a definite hump at some point in our lives. It may be that your friend has hit his. Don’t let him push you away. Stay positive. And remind him that it is not his place to decide both when we enter and depart this world, but that of the Lord. He decided to change your friend’s life, in His own wisdom and there may be a lesson in it that He –
I scanned down to the next one.
Dear Bee,
There is no way around it, being a quad can suck. If your guy was a bit of a player too, then he is going to find it extra hard. These are the things that helped me. A lot of company, even when I didn’t feel like it. Good food. Good docs. Good meds, depression meds when necessary. You didn’t say where you were based, but if you can get him talking to others in the SCI community it may help. I was pretty reluctant at first (I think some part of me didn’t want to admit I was actually a quad) but it does help to know you’re not alone out there.
Oh, and DON’T let him watch any films like The Diving Bell and the Butterfly. Major downer!
Let us know how you get on.
All best,
Ritchie
I looked up The Diving Bell and the Butterfly. ‘The story of a man who suffers a paralysing stroke, and his attempts to communicate with the outside world,’ it said. I wrote the title down on my pad, uncertain whether I was doing so to make sure Will avoided it, or so I remembered to watch it.
The next two answers were from a Seventh-day Adventist, and a man whose suggested ways in which I could cheer Will up were certainly not covered by my working contract. I flushed and hurriedly scrolled down, afraid that someone might glance at the screen from behind me. And then I hesitated on the next reply.
Hi Busy Bee,
Why do you think your friend/charge/whatever needs his mind changing? If I could work out a way of dying with dignity, and if I didn’t know it would devastate my family, I would take it. I have been stuck in this chair eight years now, and my life is a constant round of humiliations and frustrations. Can you really put yourself in his shoes? Do you know how it feels to not even be able to empty your bowels without help? To know that forever after you are going to be stuck in your bed/unable to eat, dress, communicate with the outside world without someone to help you? To never have sex again? To face the prospect of sores, and ill health and even ventilators? You sound like a nice person, and I’m sure you mean well. But it may not be you looking after him next week. It may be someone who depresses him, or even doesn’t like him very much. That, like everything else, is out of his control. We SCIs know that very little is under our control – who feeds us, dresses us, washes us, dictates our medication. Living with that knowledge is very hard.
So I think you are asking the wrong question. Who are the AB to decide what our lives should be? If this is the wrong life for your friend, shouldn’t the question be: How do I help him to end it?
Best wishes,
Gforce, Missouri, US
I stared at the message, my fingers briefly stilled on the keyboard. Then I scrolled down. The next few were from other quadriplegics, criticizing Gforce for his bleak words, protesting that they had found a way forward, that theirs was a life worth living. There was a brief argument going on that seemed to have little to do with Will at all.
And then the thread dragged itself back to my request. There were suggestions of antidepressants, massage, miracle recoveries, stories of how members’ own lives had been given new value. There were a few practical suggestions: wine tasting, music, art, specially adapted keyboards.
‘A partner,’ said Grace31 from Birmingham. ‘If he has love, he will feel he can go on. Without it, I would have sunk many times over.’
That phrase echoed in my head long after I had left the library.
Will came out of hospital on Thursday. I picked him up in the adapted car, and brought him home. He was pale and exhausted, and stared out of the window listlessly for the whole journey.
‘No sleep in these places,’ he explained, when I asked him if he was okay. ‘There’s always someone moaning in the next bed.’
I told him he would have the weekend to recover, but after that I had a series of outings planned. I told him I was taking his advice and trying new things, and he would have to come with me. It was a subtle change in emphasis, but I knew that was the only way I could get him to accompany me.
In fact, I had devised a detailed schedule for the next couple of weeks. Each event was carefully marked on my calendar in black, with red pen outlining the precautions I should take, and green for the accessories I would need. Every time I looked at the back of my door I felt a little glimmer of excitement, both that I had been so organized, but also that one of these events might actually be the thing that changed Will’s view of the world.
As my Dad always says, my sister is the brains of our family.
The art gallery trip lasted a shade under twenty minutes. And that included driving round the block three times in search of a suitable parking space. We got there, and almost before I had closed the door behind him he said all the work was terrible. I asked him why and he said if I couldn’t see it he couldn’t explain it. The cinema had to be abandoned after the staff told us, apologetically, that their lift was out of order. Others, such as the failed attempt to go swimming, required more time and organization – the ringing of the swimming pool beforehand, the booking of Nathan for overtime, and then, when we got there, the flask of hot chocolate drunk in silence in the leisure centre car park when Will resolutely refused to go in.
The following Wednesday evening, we went to hear a singer he had once seen live in New York. That was a good trip. When he listened to music he wore an expression of intense concentration. Most of the time, it was as if Will were not wholly present, as if there were some part of him struggling with pain, or memories, or dark thoughts. But with music it was different.
And then the following day I took him to a wine tasting, part of a