by Ed Jackson
‘Knock, knock,’ one of the nurses said from the open doorway.
We both stopped and stared over to her. Couldn’t she tell this wasn’t a good time?
‘I’m sorry,’ the nurse continued, smiling apologetically. ‘I’ve left it as long as I could but visiting hours ended ten minutes ago.’
‘Can I stay tonight?’ Lois asked. ‘Could you make an exception this one time? Ed’s not in a good way …’ She gave a furtive glance over in my direction.
‘I’m so sorry, guys,’ the nurse said, ‘but the rules are the rules. No overnight stays, whatever the circumstances. We’ll take good care of him. I promise.’
After Lois left, I stared at the door she’d just walked through. I had to deal with the next twelve hours by myself. How had I gone from nearly two weeks of positivity, to this?
The silence of my empty room refused to provide an answer.
‘Alexa,’ I said. ‘Play Rumours by Fleetwood Mac.’
My Amazon Dot responded to my request, and the familiar chords of ‘Songbird’ floated out of the speaker. For some reason, this album had been constantly on my mind since my accident. I’d never been a huge Fleetwood Mac fan before, but now it was my saviour at times.
I’d barely slept the night before; the unwelcome thoughts had taunted me, tested me, before going for the jugular. I was physically and emotionally exhausted. The back of my head and neck ached constantly and I couldn’t remember the last time I had felt comfortable lying in my hospital bed. Despite this, sheer exhaustion and the floating voice of Stevie Nicks singing ‘Dreams’ carried me off into a disjointed sleep. I slipped away for a moment …
I was in a park with my friends. We had been throwing a ball around and the accident had never happened. I dived full stretch to my right, almost had it …
I woke with a start. Looking around, it took me a second to remember why I was in hospital. I was still in my intensive care bed, but the echoes of my dream had stayed with me. I stared up at the ceiling as I tried to calm my heart. My subconscious was still too close; I would slip back into the dream and have to remind myself about the accident all over again.
I stared around my room, looking for something to distract me from replaying the conversation I’d just had with Lois. Why had I been such an idiot with her? I didn’t recognise that man. A low feeling of dread began to coil its way around me. Did I really think that she wasn’t there for me, just because she wanted to talk about our future together? Christ, she’d been in the hospital every single day since my accident.
Why would I say that to her?
I tried to look at it objectively, like the old me would have done.
My initial sadness, anger and desperation had almost subsided. Instead, the ‘F’ word was everywhere. Everything about my current situation was frustrating. The claustrophobia, the pain, the lack of sleep, the constant medical observations … even getting frustrated was frustrating. I suppose I’m quite a proud person and this sudden loss of dignity over the last two weeks had begun to wear me down. Bowel Care and Bed Baths – that would be the name of the musical production of this period of my life. I’d never imagined that at the age of 28 I’d be in this position, reliant on a team of nurses to carry out functions that most people don’t even think about. That proud, independent, young man had gone. Who was left?
For a moment I danced on the edge of something, a brief flit into one of my many possible futures. Me, bitter and aggrieved, wronging others because I thought that I had the right to. Hadn’t I suffered? Hadn’t I been through the worst? I would justify the wrongness of my actions by what had happened to me.
No. That wasn’t the way I wanted to live.
I thought about what my friend, Tom, who had died nearly five years ago would do if he knew I’d got myself into this state. He had loved life; lived and breathed for the next adventure. He was also tough. Tom never took the knocks personally, never let himself wallow in self-pity. It didn’t take long to realise that he’d tell me to sort myself out and look to the future.
I had to go back to basics: knowledge, distractions and learning from others.
I started up my iPad and said aloud what I was feeling. I’d found that this was by far the best distraction I had during the long nights. When I had finished, I read over some of what I’d said:
Losing your independence is shit. In hospital you have to leave your pride at the door, and at a time when you are at your most vulnerable. I’m sure there are lots of people who would love the idea of being fed grapes whilst having their feet rubbed. But when it’s happening because you can’t physically do it yourself, it doesn’t quite carry the same allure. Mundane everyday tasks that I once took for granted are all of a sudden either impossible or so hard they make me want to throw myself out of the window. As I was physically unable to throw myself out of the window, I have decided to take on as many of these mundane tasks as possible. This might result in a neck brace full of food, a straw in the eye or a mouthful of envelope. But how are you supposed to improve without giving it a go?
I had to start fighting the negativity again. Somehow, without me even noticing, I’d given up. These last two days have been really bad, but I had the chance to change. I hadn’t come this far to pick a future that I didn’t want to live.
The next morning, I felt a calmness within me that I hadn’t felt for days. I couldn’t control my body, but I was in control of my greatest resource at this time: my mind.
While I waited for Lois to arrive, I practised tapping the fingers on my right hand, one after the other, as if I were playing a scale on a piano that no one else could hear.
At exactly 8 a.m., Lois walked into my room and tentatively waved at me from the doorway. I looked over and took a moment to enjoy the sight of her. She had come back.
She shut the door behind her and walked over to my bed. I tried to speak but she cut me off. ‘Ed, I wanted to say I’m sorry for talking about all that stuff yesterday. You’ve been doing so well that I sometimes forget that you might be worrying about things more than you let on.’
I smiled at her. ‘You’ve stolen my apology thunder. I had it all planned out. There was a lengthy monologue, even an interval.’
Lois laughed and the tension lifted.
‘Look at this,’ I said, showing her my tapping fingers.
Lois bent down and peered at them. ‘The middle and little fingers are definitely moving more.’
I watched a small frown settle on her features as she studied my fingers. She treated them as if they were most important things in the world.
I took a deep breath. ‘You didn’t need to apologise. It’s me who should be doing that. I’m sorry for being an idiot and I don’t really think you’re not there for me. I promise I won’t question it again.’
She smiled at me. ‘I think that’s the sincerest apology you’ve ever given me.’
I raised my eyebrows in mock protest. ‘I think this calls for a celebration. Alexa play—’
‘Not Fleetwood Mac again!’
‘Nooo, Lois. I’m not that predictable.’ I tutted. ‘Alexa, play Legend by Bob Marley.’
Lois let out a groan as ‘Is this Love’ started up.
I didn’t care that it was the fourth time this week, I bloody loved this album. I bopped my eyebrows along to the reggae beats.
Lois frowned. ‘Alexa, stop.’
Nothing happened.
‘Alexa, stop playing Legend by Bob Marley.’
Nothing. This was the thing I loved about Alexa. She wouldn’t respond to Lois’s requests, which I found hilarious.
‘Alexa really is your favourite person,’ Lois said, sitting down in the chair next to me.
‘Could you be looooved?’ I sang. ‘Are you jealous of Alexa, Lois?’
‘Course not. It’s just annoying that she only responds to you.’
Lois kicked off her trainers and rested her feet on the edge of my bed. She had settled in for the day.
I smiled at her, content
, as I tapped my fingers along to the music.
It’s important to recognise that we all have bad days. It’s normal for life to get a bit too much at times and for our initial reaction to be negative. What’s more important is how we continue to react. If we can, we should try not to pass on our negativity to those around us. I know this is hard and we all fall down on this. An apology can often repair some of the damage, and we shouldn’t fudge it by adding an excuse at the end.
People will try to help you during a time of change or crisis, and you’ll be surprised by how wide your support network actually is. But only a few of those people will stick around if you constantly push them away.
I don’t think I would have made it this far if it wasn’t for the people around me. I didn’t really appreciate the support network I had until it was called into action. The lengths that my family, friends and even strangers have gone to make this journey that little bit easier for me was overwhelming. I had been so lucky that between my oversized family, Lois and my friends, I was rarely alone during the day. The silver lining of this accident was that I got to spend quality time with the people I loved, not just a hasty pint or a lunch that was shoehorned in between other meetings. Instead, I’ve had time to talk to the people I care about, not even about important things, or deep, life-changing conversations; just the lovely mundanities of life that we can laugh at together. I’m grateful for this time that I have been given with them.
In turn, I knew I wanted to repay that support, whether I regained any more movement or not. I’m a firm believer that what goes around, comes around. And I was lucky to have a lot of support to repay.
It had been sixteen days since my accident and my right side continued to make progress. Each day had brought a little more movement and sensation. Sometimes, the movement on my right side only accentuated the lack of movement on my left, which stubbornly refused to budge. Not even the twitch of a finger. When faced with the daunting prospect of lasting limitation, the want for more had become a daily emotional struggle. I knew that this desire was a ridiculous notion and I would therefore try to distract my thoughts away from it. I would spend my evenings learning about the people who had come before me. This had helped me realise that any progress, even if it was exclusively on one side, was a blessing and shouldn’t be a source of frustration. I needed to keep on reminding myself that I was doing okay. I had to focus on the process, not the outcome.
It was late morning and Lois and my dad had been sitting with me when my doctor entered the room.
‘Ed, how are you feeling today?’
‘Pretty good, I can almost hold something with the fingers on my right hand now.’ I frowned. ‘Well, if it’s the perfect size and it’s placed inside of them … But it’s still progress.’
I gave a demonstration and he nodded appreciatively.
‘Excellent. I’ve also got some news for you. We’ve managed to secure you a bed in the neurology ward at Bath hospital. We’ll arrange for an ambulance to take you there tomorrow.’
All three of us started talking at once. This is what we’d been hoping for; moving out of intensive care would be a huge leap forwards. The two-hourly checks should be reduced and changing hospitals meant I’d only be a few miles from my dad’s house so they wouldn’t have to travel so far to visit me. Best of all, I’d hopefully be able to start some rehab. I’d been reading up about what types of rehab other quadriplegics had found helpful, such as hydrotherapy and a tilt table. But I couldn’t explore any of their suggestions whilst I was still in intensive care.
‘I’ll go and get your mum and tell her the news,’ Dad said.
‘We’d better get packing, then,’ Lois added, as she surveyed my room. Despite her best efforts to keep it ordered, there was no denying that I’d accumulated a lot of stuff. Everyone who had visited had brought gifts or bits of equipment that they thought might help with my recovery. I stared at the three juggling balls that were resting on top of two stacked hampers of food and smiled.
‘Don’t forget Alexa,’ I said to Lois. ‘I don’t want her to go “accidentally” missing in the move.’
‘Hmmm …’ was the only response that I got.
A few hours later, my room had been packed up and I’d settled into my last night in intensive care. I’d be lying if I said that I would miss it, but that didn’t change how grateful I was to everyone at Southmead Hospital who had looked after me. From Mr Barua who had saved my spinal cord, to the nurses who’d jollied me along and tried to make bowel care and bed baths as normal as they possibly could, to the volunteer guitar player who’d come in every week and spent his spare time serenading the patients (‘play “The Chain” by Fleetwood Mac again!’).
All of them deserved my thanks.
Fifty years ago, it’s likely I wouldn’t have survived my accident. The huge advances in medical science have helped with that.
Seventy-five years ago, with a lesser injury, I wouldn’t have survived as there was no NHS. There wouldn’t have been a reliable ambulance service to collect me and take me to hospital (what existed before 1948 was an ambulance service that wasn’t available to everyone). Even if I had managed to make it to a hospital, I would’ve had to pay for all of my care and at some point my money would have run out. And then what?
Alternatively, if we had a health insurance scheme in the UK, rather than the NHS, I might have survived my accident but I’d be paying for it another way. I’ve read about the difficulties that people in my position have faced when trying to reinsure themselves after their health insurance premium ran out. They often struggled to find insurance for a reasonable cost as their spinal-cord injury would be classed as a pre-existing injury. I’m therefore eternally grateful that this little island I live on decided to provide free national healthcare.
I tried to remember how lucky I was that my life had been saved several times in the first few days following my accident. My dad and Diane were my first saviours; they stopped me from being moved and knew to keep my spine straight. The ambulance people, and the doctor with them, had finely balanced the urgent need to get me to hospital with keeping me alive along the way. Mr Barua and his team gave my body the chance to heal and the nurses kept me alive in the following days when I was unable to move or feed myself. So I knew that, despite everything I’d gone through, I couldn’t get frustrated with my situation. I owed it to all those people who’d helped me. The ‘F’ word could bugger off for a bit.
Chapter 5
On Tour
I’d said my goodbyes to the nurses who were working that morning and they’d wished me all the best for my stay in Bath hospital. As I waited for the ambulance to arrive, my excitement growing for the next stage of my recovery, one of the nurses popped her head around the door.
‘I’ve only just got on shift and they tell me you’re leaving!’ she said, still standing in the doorway.
‘I know, it was news to me too. I can’t wait to get over there and start on my physio.’
She leant against the glass section of the wall, all shiny and new. It still felt like I’d spent the last two weeks on the set of an American hospital drama.
‘I bet you can’t wait to get going. And you’ll be in safe hands there; it’s the ward where Pete Bishop is the head neurophysiotherapist.’
My ears pricked up. ‘You’ve heard of him?’
‘Oh yes, he’s a bit of a legend. From Sicily, I think, and ex-army.’
I let out a low whistle as images of a battle-hardened, ex-Mafia kingpin, neuro-physiotherapist rushed through my mind. This was the man for me.
Travelling in the ambulance, the journey wasn’t quite the high-speed delivery that I had been expecting. The lights were flashing but I was a bit disappointed that there was no siren. As we pootled along on the inside lane of the dual carriageway that connects Bristol to Bath, I realised this wasn’t the emergency affair I’d anticipated because they wanted to make sure that there was no damage to my spinal cord on the way there. Fair play to
them – it would be a pretty bad day at the office if they delivered me with less spinal cord than they’d collected me with.
I spent the journey trying to distract myself from the bumps in the road by chatting to the paramedic in the back with me. Every jolt made me panic that the 4mm of spinal cord I had left was being whittled away. Unable to see out of the small window, I played a game of trying to guess the route the ambulance was taking just by the frequency of the familiar roundabouts and turns that we made.
Pulling up at the Royal United Hospital in Bath, I couldn’t help but think back to when another set of ambulance doors had opened and I’d been wheeled out under the same entranceway sign. Like then, it was a warm day, and I savoured the glimpse of light-blue sky, so pale it was almost white in places. God, I missed being outside.
All too quickly, I was wheeled into the entrance. The clank of my trolley as it travelled over the lip made me wince. I squeezed my eyes shut as I thought about that frail length of spinal cord that connected my brain to the rest of my body. Every bump of the trolley as it travelled through the maze of corridors made me grit my teeth. To distract myself I opened my eyes, stared up at the ceiling and tried to take my focus away from my physical state and shift it on to my external surroundings.
There was no towering glass ceiling here. Instead, I was met with grey tiles that sagged in places. A few were missing altogether and wires spilled out from their yawning gaps – was that safe? I had been born in this hospital, had visited it numerous times in my clumsy teenage years, so I was familiar with it. But I’d never spent much time looking at it from this angle. It didn’t appear that they’d had the funds to do any updates since I’d been born; there was no multi-million-pound refurbishment that I could see. I began to feel a little nervous about my transfer. Was this the best place for me?
Arriving at Helena Ward, I tried to smile as I was greeted by the friendly nursing team who announced that they’d been saving the end bed on the ward for me. This was a coveted position as you were only directly next to one of your seven fellow patients. I thanked them and tried to smile at Lois, Mum and Dad. They’d arrived before me and had tried to give the end bed a homely feeling by depositing all of my belongings around it. Lois caught my eye and a message passed between us. I knew then that we were both worried about my transfer to this hospital.