If I Die Before I Wake

by Emily Koch

  But this one time, it got lost. I took it out of my shoe but didn’t leave it in its usual place in my wardrobe. I only realised a few days later that I didn’t know where it had gone. I ransacked the place – Bea came home and thought we’d been burgled. It was the loss of control, I think, that got to me. When did I last have it? Where could it be? For hours, I couldn’t get past it. Those thoughts rotated in my head, those same little insistent flies.

  They were at it again now. Going round and round and round. Not because I had lost something, but because of those men and their words: their meaning just out of my reach, their implication far beyond my control.

  Looking back, I can see that this was the point when things changed. From then on, it wasn’t just me who was in trouble.

  8

  FEDERER TO SERVE. I’m down two sets already, and three games to love in the third.

  The crowd’s chatter hushes.

  He drops the ball on the bright green grass in front of his feet, bounces it a couple of times. He looks at me once. He thinks he’s got this.

  Bring it, Roger.

  His left arm shoots the ball up, while his right swings back with the racket. A mirror image – both arms now outstretched. His knees bend, weight on his toes. The racket lifts as he watches the ball loop up and then he jumps, brings the racket onto the ball, sweeps it down to his hip. His foot lands on the baseline but I don’t see it – I’m watching the fluorescent yellow bullet, dancing on my toes.

  This is the moment. I’ve lulled him into believing he can win. But he can’t win. I’m the next Wimbledon champion.

  I fire back the strongest forehand known to man. The crowd goes wild. He only just returns it, throwing his body across the court to swipe a backhand straight back to my racket.

  I tap a drop shot which he can’t reach.

  Love-fifteen.

  I take off my cap, wipe my forehead, wave to my adoring fans.

  The good things about imaginary tennis: always winning, beating the best, the ability to return impossible shots, knowing exactly where the ball is going to go and regularly doing things that are brilliant and unexpected. The only downside: you’re not actually playing tennis. I’m not dancing on my toes: my feet are stuck still. They are cold. I’m not whacking backhands across the court: my arms are deadweights at my side. They only move when the physio works my joints, or the nurses roll me over.

  One of the doctors gave me the idea for these pretend sporting activities. Early on, when I was still emerging from what must have been a deep coma and still regularly slipping in and out of sleep, they rolled me into another room, trolley wheels squeaking. My eyes fell open a little when they moved me, and I watched bright white shapes fly past me on the ceiling, doctors’ and nurses’ heads bobbing into my view like black and grey balloons drifting overhead.

  They told me I was going to have a scan of my brain. Occasionally they explain things to me, like this. But not always. Not when they first came at my mouth with their suction machine, for example. I’ve worked out that it has to do with removing mucus from my chest, and the spit I can’t swallow from inside my mouth. But that first time? I honestly thought they wanted to kill me.

  Before he scanned my brain, Dr Sharma gave me a few instructions, his blurry balloon head floating over my face. The scent of soap on his skin nearly masked the room’s disinfected aroma. ‘We’re going to put you into the MRI scanner. It will let us take a look at that brain of yours.’ He sounded young, I always thought. My age. And kind – I liked him. ‘We’re going to try something called a functional MRI – to look at where the blood goes in your brain when we ask you to do different things.’ Specks of spit landed on my face. ‘Alan, if you can hear me, here’s what I want you to do.’

  Did you call me Alan?

  ‘I’ll talk to you through these headphones we are putting on you. The machine will be quite noisy, but we’ll play you music to drown that out. When you hear my voice, I’ll be asking you to do two things. First, imagine playing tennis. Really think about swinging that arm of yours. Pretend you’re Tim Henman.’

  ‘Henman? Is that the best you can think of?’ This female voice came from another person leaning over me, putting headphones over my ears. I smelled coffee on her breath. ‘At least you’d want a chance of winning,’ she said.

  ‘Thank you, Caroline. I’m not sure winning is the objective here.’ I had learned that you can hear a person roll their eyes.

  She laughed. Her coffee breath didn’t repulse me – instead it felt intimate. She moved close and the room suddenly felt very warm.

  ‘We will watch your brain on the scans,’ Dr Sharma said. ‘Look for signs that you are responding. If you do, we could then try using this method to help you communicate with us. Cutting-edge stuff, Alan. Your family have agreed to let us give it a go as part of our research trials.’

  At last. They were going to help me talk.

  ‘After the tennis, I will ask you to imagine you’re walking through the rooms of your house. Try and really see the rooms and the furniture. This will work a different part of your brain. Just do what I say and we’ll see what happens.’ I felt a sudden pressure around the side of my face and Dr Sharma said, ‘I’m just putting your head in a brace to keep it still. We don’t want you moving around in there.’

  Not much chance of that.

  I felt the bed moving underneath me. I could imagine what was happening – I’d seen pictures before of patients sliding backwards into the middle of a big doughnut-shaped machine. Then the music started in my ears. Rolling Stones, ‘You Can’t Always Get What You Want’. Excitement raced through me. In those days I was still hopeful, and they had given me a chance to show them I was conscious. To communicate with them!

  I imagined knocking balls across the court. Lifting my racket high into the air. But as I did so, a familiar feeling swept over me. A sleepiness, a heaviness.

  No. Stay awake.

  I swung my racket, looked frantically for the ball on the court. I couldn’t see it. The neat white lines on the grass court were fading away.

  No.

  Why was this happening now?

  The last thing I remembered before I lost consciousness was my racket being snatched away. I felt the foamy grip of its handle slide against my fingertips as I fell backwards, and down.

  I woke up back in my hospital room, with my eyes closed. I could feel the daylight from a window on my left, hear the chat and movement in the ward outside the open door to my right. The smell matched the rest of the hospital, of course – apart from my flowers (roses, this time?) and my sister’s Chanel No. 5 perfume that Bea and I used to buy her for birthdays and Christmases, unable to think of anything more personal for a woman we hardly spoke to.

  As I drifted into awareness I heard voices, mid-conversation.

  ‘… didn’t respond at all. I’m sorry, Mr Jackson. Miss Jackson.’ Dr Sharma was speaking to Dad and Philippa. He was matter-of-fact but sympathetic.

  I fell asleep – couldn’t you tell that?

  ‘If your son was conscious then we would have hoped to see activation in a region of his brain called the supplementary motor area when we asked him to play tennis.’

  They had to give me another go. They would, wouldn’t they?

  ‘And when we asked him to navigate through his house there might have been activity in the parahippocampal—’

  ‘The what?’ Philippa sounded impatient, as usual. Her voice was quick, bitter, harsh: she spoke to the doctors with the same anger that she used with me.

  ‘The ah, what I mean is, right in the centre of the brain. Basically, the area of the brain which he would use if he was physically playing tennis would light up in our scan. The part of his brain used for spatial navigation would light up when we asked him to imagine walking round his house. But we didn’t see this happening. It may well be, in part, down to the reliability of the test – it is still in development.’

  I had missed my chance. I screamed at the
m. I’m awake! You’ve got to get me out.

  My tongue lay heavy in my mouth, mocking me. It tasted of bitter antiseptic.

  ‘So we can’t try and communicate with him that way? You said we might be able to communicate.’ Philippa sounded choked up.

  Dr Sharma continued. ‘No. I’m sorry. If – and it was a long shot – he had responded to this test, we could have tried asking him yes/no questions, asking him to imagine tennis for yes and the house for no. But it hasn’t worked.’

  ‘That’s okay, thank you for trying.’ Dad remained as polite as ever, his voice low and quiet. I felt like a little boy. I wanted him to put his arms around me. But instead of reaching out to me, he comforted Philippa. ‘It’s all right, darling. Come here.’ Clip, clip, clip – her heels were loud on the floor as she moved towards him. I heard her sniffling into his shoulder as he pulled her close. I wanted that. ‘It’s still early days,’ he said.

  ‘Exactly, Mr Jackson. No one knows what any patient in a vegetative state is experiencing. Alan could still turn things round.’

  ‘Alex.’

  ‘Sorry?’

  ‘Alex. You said Alan.’

  ‘Did I? Terribly sorry, there’s so many patients but it’s no excuse—’

  ‘Don’t worry about it. Easy mistake.’ In the midst of my despair I thought how the doctors must have loved my dad. I had heard relatives of other patients shout them down, and once I listened as an emotional brother pinned Dr Sharma to the wall by his neck. But not good old Dad. My dad. Would I ever speak to him again? Had I told him that I loved him? How much I appreciated him? No. I’d bottled it on several occasions, because it would have been too corny. We didn’t do emotions – not me and Dad, not before all of this. When I found out that he’d won his school’s Teacher of the Year award, voted for by students, I didn’t tell him how much I respected him. After he gave the eulogy at Mum’s funeral, defying everyone who had told him it was a bad idea and he wouldn’t be able to hold it together, I hadn’t told him that I was proud of him. I had never told him that if I ended up as half the man he was, I would be pleased with myself.

  Philippa interrupted my list of regrets. ‘Can we try the tests again? Next week?’ I was always surprised that my sister was so vociferous in her demands for doctors to do everything they could to help me. ‘We need to keep trying. You need to keep trying.’

  ‘I did explain to your father.’ Dr Sharma hesitated.

  ‘What? What exactly did you explain to my father? Dad?’

  ‘It’s a question of funding.’

  ‘You’ve got to be kidding me,’ she snapped.

  ‘I’m sorry. This is a very new test.’ Dr Sharma sounded terrified of her. Your father agreed to let us try with your brother as part of our research, but that’s all we can do for now – just one round.’ He paused. ‘We may be able to try again in a few months, but it depends on whether we get the money to continue our trials.’

  I’d missed my moment. What if they didn’t run the tests again?

  Shit. Shit. Shit.

  Tiredness overcame me. Wafts of overpowering Chanel No. 5 sedated me.

  I lost consciousness again.

  That was what it was like, in those very early days, long before I decided I wanted to die. I haven’t always been as awake as I am now. As well as the vast holes in my memory from before the accident, there are big gaps from the start of my time in hospital when I was slipping in and out of consciousness – like that day of the initial tennis test. I have no idea when I first came round. It began with vivid dreams, waking up for what felt like a few minutes, hearing voices, and then dozing again. This time is blurred. No one clicked their fingers and turned my mind on suddenly. Each time I woke up I felt groggy, as if emerging from a general anaesthetic. I didn’t know where I was, or why.

  As well as experiencing the slow process of coming round from my head injuries, I now know that I must have also been suffering from frequent bouts of pneumonia; there were spells when I hallucinated for days on end and woke up with no sense of how much time had passed. It still takes me down regularly, and is the reason for me being kept in hospital for so long since my accident. The doctors say I can’t be transferred to a nursing home or to my family until I have been free of any lung issues for a while.

  But in those early days and weeks, my inability to move hit me far harder than the gaps in my knowledge and time.

  What is happening to me? I thought, over and over. I repeated it, like a chant – semi-delirious with the painkillers they must have been pumping me full of. What is happening to me what is happening to me what is happening to me what is happening to me.

  I could hear Bea, Dad, Philippa. Tom and Rosie. Others, too – doctors and nurses. I desperately tried to lift my arm, turn my head, somehow let them know I could hear them. But nothing seemed to have any effect. I tried to make a noise, open my mouth, grunt. That didn’t work either.

  The big surprise for me came when I discovered the limits of my paralysis. That moment came during an early visit from Philippa. She sat next to me and dug her talons into my arm. Her hand conducted icy coldness to my skin.

  ‘Seriously, Alex?’ she spat. ‘You’re an idiot for not wearing a helmet. It’s your own fault you’re in this mess, why would …’

  I let her voice disappear, and focused my attention on my arm. I could feel her nails, couldn’t I? Although I couldn’t move, I could still feel anything that came into contact with my skin. I felt the nurse touch my shoulder, I could feel the sheets above and below me. And I could feel pain: the stab of the injections, cramp in my legs and arms, headaches.

  For so many years my mind and body had worked together. I took everything for granted, from simple things like opening a tin of baked beans and walking down the road, to solving complicated climbing problems. No matter how many pull-ups I did, I would never have been able to do any of it without my mind. Climbing is about puzzles. You have to think two, three, four moves ahead. If you put your foot on that ledge, and your fingers into that gap, will you be able to reach that flake with your other hand? But now I had become my own jailer. My mind roamed free: a raging, howling beast trapped inside the cage of my body.

  Crying appeared to be the sole thing I could do: real tears rolled down my face when I was sad or in terrible pain. But they – the nurses, my family, Bea – would wipe them away, thinking my eyes were watering. They never spotted that there was a link between my tears and what they were saying or doing.

  ‘It’s amazing, isn’t it?’ one nurse said in those early months, after describing her busy weekend of socialising – the type of weekend I thought I would never have again. I was suddenly overwhelmed by the loss of everything I had valued in my life. ‘He’s completely out of it but here he is, crying like a baby. Isn’t it amazing what the human body will do, all of its own accord?’

  Why had everyone written me off like this? I couldn’t understand. But then, I didn’t know what the diagnosis should be, either. My symptoms didn’t fit with any illness I had ever heard of. I remember the day I heard my official status for the first time. One of my nurses was briefing a new member of the team.

  ‘… he was taken off the ventilator a while back now but still has his tracheostomy. He’s been in a vegetative state for three months, so we need to keep an eye on the usual – pressure sores, phlegm build-up …’

  Vegetative state?

  My mouth went dry and my heart began to beat quicker. It couldn’t be that. I could hear them. A vegetative state? Like a coma? What had happened to me?

  The nurses kept talking but my ears filled with a high-pitched buzzing as they grew hotter and hotter.

  What’s happening to me?

  It soon became pretty clear, from what I heard the doctors say, that I might never regain control of my body again. Not being able to walk, run, climb, have sex: that amounted to a life I could not bear to consider or accept. Before all of this, I never sat still. I got things done. Which gave me another reason to give
up trying.

  Could I hope for nothing better than communicating with them, one day? I didn’t think that would satisfy me. If I had lost my body, I would lose my mind. I was done.

  After the first tennis test I had hoped and hoped for another chance. Another go at the game. But it came too late. By the time it did, I didn’t want to play. After Bea started going to grief counselling, Dr Sharma told my dad that they had more funding approved. Would he let them run more tests on me? Dad agreed, and the doctors wheeled me into the MRI machine again, stuck headphones on me and played the radio through them to dampen the noise of the scanner. New songs I had never heard filled my head. When they asked me to start a rally, I ignored them. I imagined myself in a white-walled room, and made my mind go blank. My heart cracked when the doctor gave my father the results – still no sign of life. He wept this time. I tried not to hear him, but I couldn’t block it out.

  It wasn’t an easy decision to make – it meant giving up on the hope of ever speaking to Bea again, of ever climbing again. But once I made it, I refused to indulge myself in grief. Every time I had a weak moment and tried to speak when my dad came into the room, desperate for him to hug me, I repeated my mantra. It’s the right thing to do. It’s the strong thing to do. Man up, Alex. I told myself I wasn’t giving up on life. Did this even count as life? I could breathe on my own. My heart beat freely. My brain functioned. But this didn’t feel like being alive. It lacked, amongst other things, one huge and vital element: acknowledgement that I existed.

  I found it easy to fall into step with other people’s view of me. They all seemed so convinced of my brain’s inactivity that I started to believe it myself.

  What I hadn’t understood yet, when I refused to participate in that second round of tennis tests, was that my body wouldn’t let me give up so easily. In the weeks that followed that visit from the police – while they were busy unearthing evidence in a case that would turn out to be more complex than even they could have imagined – I had my own set of discoveries to make. I was about to find out that we all have an instinct to defend ourselves when we are put in danger. Even when there is very little we can do to fight, we will still try.