by Ed Jackson
I couldn’t decide what she was up to, but I could have a good guess. Being one of the few patients in intensive care who wasn’t in a coma, I had got to know the medical staff better than most. For three days, I’d been badgering them to wheel me out of my room. I’d been in a sterile box for eight days and it was safe to say that it was driving me mad. I’d counted all the ceiling tiles (184) and knew at exactly what time of day the sunlight would hit my window and when it would depart. I had to get out of here.
In ten minutes the nurse was back with another of her colleagues. With an efficiency that would impress even Florence Nightingale, they began attaching monitors and drips on to the side bars of my bed. In under five minutes we were ready, and they began to push my bed towards the door.
The wheels of the bed squeaked in protest, as if they knew we were making an illicit journey. Tapping my right index finger along to the happy tune in my head, we rolled out of my room and down the corridor.
All of the machines attached to my bed beeped away, unperturbed by the change of scenery. We squeaked our way out of the intensive care ward and my smile grew bigger with every one of the nurses’ steps.
Down the corridor we sailed, a confident Armada of three. People scattered out of our way and pressed their backs up against the corridor walls to allow us to pass. No one would dare cross in front of us; mine was a tank of a bed, big enough to support all the equipment needed to keep someone alive.
We stopped in front of a set of double doors.
‘We have to get through the cardiology ward,’ my favourite nurse said, who I had recently upgraded to favourite person (apart from Lois, of course). There was a note of worry in her voice; I imagine that what they were doing wasn’t exactly permitted.
‘What does that mean?’ I asked, unsure of her instructions.
She leant closer. ‘Look straight ahead. And don’t make eye contact with anyone.’
My eyes widened for a split second, before I took control and positioned them firmly upwards.
‘We need to get through without any questions being asked,’ she continued.
I held my breath as I stared at the doors to freedom.
If you happened to be passing through the foyer of Southmead Hospital on that Easter weekend, you may have seen a strange sight. In amongst the families seated at the scattered tables and chairs of Costa Coffee was a magisterial intensive care bed. And on this bed, happily slurping away at a Salted Caramel Crunch Coffee Frostino through a long straw, was an immobile, neck-braced, rugby player. Whose hospital gown may have ridden up a bit too far to be decent.
My favourite nurse leant over and positioned the straw near my mouth again. I’m usually a black Americano kind of man, but I thought that this occasion called for a more decadent drink. I took a big slurp, enjoying the sights of the foyer. Life was carrying on, just as it had done before.
I was happy to be out having a coffee with friends, not sad that my legs didn’t move.
That evening, back in my room, I thought about my trip out for coffee. It had given me the strength to consider a future where I wouldn’t recover the use of my legs or even both of my arms. Life would still go on, whether I decided to take part in it or not. I knew that if I was going to stay this way, then I was going to have to find a way of adjusting to it.
Through rugby, I already knew about a couple of people who’d had spinal injuries before my accident. The first was Matt Hampson who, when he was 20, had a scrum collapse on him, dislocating his neck. He sustained a spinal cord injury at C4/C5, which is two vertebrae up from mine. The swelling then went all the way up to C2. He spent eighteen months in hospital, was permanently paralysed from the neck down, and still needs a ventilator to breathe.
After he left hospital, he started the Matt Hampson Foundation, which has raised millions for young people who have been severely injured through sport. His ethos is contained in one simple phrase: Get Busy Living – a mantra I was going to apply to my situation.
Henry Fraser is also someone I’d heard about before my accident. He’d been an academy player at Saracens rugby when, at the age of 17, he had gone on holiday to Portugal. He had run into the sea with his friends, but when he’d dived into the surf, he’d hit his head on a sandbank below. Henry sustained a C3/C4 compression fracture of his spinal cord and spent six months in hospital. He was left permanently paralysed from the top of his shoulders down. It had taken months in hospital for him to learn how to breathe without a ventilator. When he was discharged from hospital, he taught himself how to paint intricate and delicate artwork holding a specially adapted paintbrush in his mouth. He is now a celebrated mouth artist.
Information was one of my lifelines: it armed me against my situation. So I started researching others who had come before me and had made a damn good job of what they’d been left with.
Christopher Reeve was an actor who played Superman back in the Seventies and is probably the most famous quadriplegic. He was 42 when he was involved in a riding accident. His horse had suddenly stopped, and he was thrown forwards, landing head-first on the ground. He sustained a C1/C2 spinal cord injury (it doesn’t get any higher on the spine than that). His spinal cord was so badly damaged that his skull was completely severed from his spine for several days. He had gone from being a world-famous actor to being permanently paralysed from the neck down.
I was really interested in reading about how he’d adjusted to his new life. He spoke openly about initially considering suicide and it was actually his actor friend, Robin Williams, who turned him around. Robin Williams entered his room, in full character mode and costume, and pretended to be a doctor who needed to perform a rectal exam. Christopher said it was the first time he had laughed since his accident and he knew then that life was worth living. Christopher was inspired by all the people he met in the spinal unit in hospital. So, when he was discharged, he decided to use his fame to campaign for spinal cord injury research and fundraising. He went on to raise millions through the Christopher & Dana Reeve Foundation.
Another person I learnt about was Kirsty Ennis who had joined the Marines when she was just 17. Whilst on her second tour of Afghanistan, the helicopter she was travelling in crashed. She suffered multiple injuries including a traumatic brain injury, spinal injury, extensive damage to her jaw and the eventual amputation of her left leg above the knee. After a year of rehab, she learnt how to walk again using a prosthetic. She was retired from the Marines on medical grounds and started looking around at what else she could do. She started by competing in the Paralympics as a snowboarder, then she walked one thousand miles across the UK to raise money for a non-profit organisation and rounded it all off by working as a stuntwoman in Hollywood. But that wasn’t enough. She decided that she wanted to raise money for non-profit organisations by climbing the Seven Summits, which are the highest peaks on each continent. When I learnt about her, she had already conquered Mount Kilimanjaro and was prepping for Carstensz in Oceania.
As I lay in my bed late at night, only using my voice to control my iPad, I thought of Stephen Hawking, so started researching him as well. At the age of 21, he had been diagnosed with motor neurone disease and given just two years to live. Motor neurone disease is a particularly nasty degenerative disease, which, bit by bit, took the movement from his body. He outlived his doctors’ prognoses and, at the age of 23 and using a walking stick to steady himself, he married. He went on to have three children. Always fighting against the amount of time he had been given to live, he went on to become one of the twentieth century’s most eminent scientists, whose theorems changed the course of cosmology and theoretical physics.
The creeping paralysis first left him unable to walk. A few years later he could only move his fingers and his face, and then, because of medical complications, it took his speech. By the end of his life he communicated through a single muscle in his cheek, which was interpreted by a computer that gave him his iconic voice. He died at the age of 76 – fifty-three years longer than doctor
s had initially predicted.
Reading about Stephen Hawking was very humbling. For years he watched movement leave his body, knowing it would never return. At least I could watch some movement return to my body, knowing that there might be more to come.
These were just a few of the people I looked up to. They had also suffered unexpected accidents or illnesses and had come out the other side fighting.
I tell myself that, whatever situation I may be facing, there will be someone else who has been through something similar. That I should find them, read about them, and see how they approached it. There is no need to start from the beginning when facing change. Instead, stand on the shoulders of giants.
I stared out of the window in my hospital room. The tantalising view over north Bristol towards Wales was beginning to frustrate me as I hadn’t been outside in ten days. I tried to remind myself that I was lucky to have a window; many of the other patients didn’t.
‘We have to think of his mental health as well as the physical,’ my dad said, shifting his weight onto his left leg. He had been making his case for a while and I wasn’t sure whether any progress had been made.
My new doctor sighed. ‘Let’s at least wait until he has been discharged from intensive care.’
Dad had been trying to secure a trip outside in the hospital grounds for me for days. We hadn’t told the doctor that I’d already had my jaunt to Costa Coffee as we didn’t want to risk getting anyone into trouble.
‘We should take a holistic approach,’ Dad continued. ‘Treat the mind as well as the body.’
‘Holistic’ – excellent word, Dad. Another thing that I was incredibly grateful for was that my dad, who used to work as a GP, stood a better chance of pushing my case. He understood medical jargon and knew the right points to raise.
The doctor glanced up to the ceiling. He seemed to be weighing everything up. ‘I can’t promise anything, but I’ll speak to my colleagues about it.’
‘That’s what you said yesterday.’
‘I’m sorry, but it’s the best I can do.’
The doctor turned to leave.
Dad glanced over as a frown settled on my face. ‘I’ll be back in a bit, Ed.’
Twenty minutes later, Dad returned. ‘They’re going to take you outside this afternoon.’
I stared at him before speaking. ‘How … how? What did you say?’
‘What was necessary.’
I gave a joyous whoop – a small victory had been won, but I knew that ultimately everyone was pushing in the same direction. I made a quick call to Lois and arranged to meet her outside in an hour.
Dad never did reveal what he’d said to convince the doctor to let me go outside for fifteen minutes.
That afternoon, I took my second journey out of my room. This time, when we passed through the cardiology ward, I tried to make eye contact and smiled at everyone.
Ten minutes later, the automatic exit doors eased their way open. Lois was standing on the other side of the car park, waiting for me. The first thing I noticed was the light breeze on my skin. It made my arms prickle and goose bumps began to form. I loved this automatic reaction my body had managed to conjure.
My main view was of the sky and I watched the clouds, plump and docile, resting above me. As I was wheeled into the car park, I could hear Lois’s approach with two other friends I wasn’t expecting. I hadn’t known that she was bringing them with her; this had obviously been planned with my dad.
Molly, my 10-year-old boxer, was scooped up into the air and we came face to face. She recognised me instantly and was wriggling to get onto my bed. I lifted my fingers to Molly’s fur, and she gave my hand a long lick. I could feel the coarseness of her tongue across parts of my skin. I then reached out and managed to give my other dog, Barry, the smallest of tickles behind his ear with my two working fingers. Fifteen minutes with my dogs – it was bliss.
Animals don’t see you as any different. They don’t stare at your neck brace or try to hold back the tears. They just recognise the person they share a home with.
This lovely bit of normality in an alien world settled me for the rest of the day and I slept well that night. Whether it’s a favourite meal, looking at some old photos or a trip to see the dogs, it’s important to keep some normality in your life.
I knew it was mine. I knew how you were supposed to move it. I knew what it felt like to move it. But it just didn’t want to play ball.
It was a very unnerving experience staring at a part of your body, telling it to move, and it deciding not to respond. Despite this, I had spent every waking hour of the last two days staring at my feet and telling them to move. Never has a toe been watched so intensely and it was beginning to shrivel under my stern gaze.
I changed tactics and began talking to my toes. Words of encouragement, cajoling, bribery, a stream of abuse and even the occasional apology. Nothing worked.
It was my twelfth day in hospital. Lois was sitting next to me, pulling her long, blonde hair into a messy topknot and then repeating the process when she didn’t like the way that it sat.
‘I think I’ll have to go back to Cardiff tomorrow. Just for the day,’ she said. ‘I have to check on the house; we haven’t been there for ages.’
Since my accident, Lois had been staying at my dad and stepmum’s house, as it was much closer to the hospital. I didn’t know why, but the idea of Lois going back to Cardiff, even for a day, unsettled me. It was as if life was starting to shift back to some semblance of normality for everyone, apart from me.
‘Do you have to go back already?’ I said, still firing those messages to my toe. ‘Can’t it wait a week?’
‘Not really, Ed. I have to say something to work as well, I’ve been off for nearly two weeks. They’ll want to know when I’ll be coming back.’
My stomach dropped at the thought of Lois and my family returning to their lives, while I lay in hospital, static, unmoving. I told myself that’s what people have to do in these situations. Lois was right to want to go and check on the house; we couldn’t just let it sit there.
‘What time do you think you’ll go?’
‘Probably around— Ed, did you just move your toe?’
‘What?’
I stared at her.
‘Do it again … Again.’
Another message was shot down.
‘Oh!’ Lois said, standing up. ‘It moved. It definitely moved!’
I stared at it; there was a definite twitch.
Terrified that it might stop moving, I kept trying to wiggle my toe as Lois ran to get my mum.
All bets were off. Everything I had been told was now out of the window. I’d sent a message to the furthest point from my brain. There was life in my legs … it might not be much, but it was all the hope I needed.
Chapter 4
The ‘F’ Word
All I could do was watch as Lois systematically organised the belongings in my room. She was now crouched in the corner, folding my clothes. They didn’t really need tidying, but she obviously felt the need to do something practical. I understood that – I was desperate to do anything that didn’t involve lying flat on my back …
Shit. I was crying again.
I quickly blinked away the tears before Lois saw.
Why did I keep on doing this? I’d never really cried before the accident. I had nothing against crying; it just wasn’t something I did. I’m not saying that I was an emotionally stunted, manly-man who went around headbutting walls. Instead, I just got on with things. I processed them in my own way. But I couldn’t seem to do that at the moment, and I didn’t know why.
For three days I’d had a toe that wiggled and a finger I could now type with. Shouldn’t I be on top of the world?
You also have a body that doesn’t move, and you don’t know when this will end. Or if it ever will …
My thoughts had turned against me these last two days. I couldn’t stop thinking the worst things about myself; I would never have had those thoughts
about someone else in my position.
‘Ed,’ Lois said, while balling some socks, ‘what do you think I should do about my job?’
‘Umm …’ I responded, testing my voice to make sure it sounded normal. ‘I don’t know, whatever you want to do.’
‘And netball, too,’ she continued, still crouching over my suitcase.
‘You’ve been doing a lot of thinking,’ I said. ‘You haven’t mentioned any of this before.’
‘I’ve been thinking lots about the practical stuff. It’s how my brain works, you know that. I’ve got about eighteen steps in my head and I’m wondering which one I should tackle first.’
‘Well, what else is there?’ I asked, reasonably sure I’d got control of myself again.
‘I’ve been thinking about the house. It’s not really very practical with all those stairs. I’m not even sure if we’ll go back to Cardiff.’
I flinched. Not go back to Cardiff? What did she think was going to happen to us?
She stood up and stretched before turning around. I eyed her ease of movement and for the first time I was jealous of it.
‘I think I’d like to go back to work one day a week, just as a trial,’ she said, now circling her arms behind her back to free up her muscles. ‘And start playing netball again. What do you think?’
Before I knew it, I was crying again. Big wet tears that no one could hide were streaming down my face. I felt a surge of anger that I could lose control like that.
‘Ed, what’s wrong?’ Lois asked, hurrying over to the bed.
I gasped in air, unable to answer, just wanting the simple dignity of being able to wipe my face. But no, I just had to lie there, unable to even turn away.
‘It’s starting to feel like you’re not there for me,’ I eventually said between sobs. ‘You’re busy planning what you’re going to do next and I’m just lying here.’
Lois’s face crumpled. We never argued; we weren’t that type of couple.
‘Oh, Ed,’ she said. ‘I’m so sorry. I can’t believe that I’m here thinking about netball and wor—’
