by Ed Jackson
The curtain next to my neighbour was pulled shut and it bulged outwards as hampers, a suitcase and a couple of bags of fresh food infringed onto his side of the partition – if he wanted to take up a boundary dispute with me, he’d have had a good case.
The nursing team transferred me into my new bed and we all politely tried to ignore the man across from me who kept on shouting out random words. That’s the thing about a neurology ward, it isn’t just for people like me with spinal injuries. It’s for people with brain injuries as well, and they could be at any stage in their recovery.
Mum pulled the other curtain closed and we tried to carry on as if I was still in my room for one at Southmead Hospital. Naturally our voices were lowered and there were obviously some topics we skirted around as we were very aware that a thin piece of plastic may have given the illusion of privacy, but the reality was very different. We might as well have asked the other patients and nursing staff to pull up a chair.
Lois jumped as the curtain next to her was pulled back briskly. We all looked around guiltily, worried in case we’d broken Helena Ward etiquette so early on in my stay. Maybe we should have left the curtain open …
A five-foot-four, stocky man with dark, gelled hair stood on the other side of the curtain. He was dressed head to toe in Fila sportswear and his trousers were tucked into ankle-high army boots.
‘You must be Ed,’ he said in a thick West Country accent. He looked me up and down. ‘Big lad, aren’t you?’
‘Not as big as I used to be. Turns out lying on your back all day isn’t too great for muscle wastage.’
He nodded. ‘We’ll see what we can do about that. I’m Pete; I’ll be your physio while you’re with us.’
He wasn’t exactly what I’d been expecting, but I was so pleased to meet someone who I could start working with on my recovery. Everyone introduced themselves and Pete made an effort to put us all at ease.
‘We’ll start with the ASIA testing on Monday,’ Pete said. ‘And we’ll get going with you then.’
‘Maybe we could do it now?’ I said. ‘Mum and Dad can shift over and I want to talk to you about these studies I’ve read from Japan—’
‘We can talk about what you’ve read while I assess you on Monday. I’d be really interested to hear about them then.’
‘Perhaps we can run through a few moves today,’ I said. ‘So I’ve got something to do over the weekend. I was think—’
‘Ah, Ed,’ Dad said, ‘you might want to look at the time.’
I checked my iPad. It was after six. And it was a Friday.
Outside of intensive care, all hospitals sort of shut down over the weekend. They operate on a strict nine to five and I’d already been infringing on Pete’s time. I’d have to be patient and wait another two days to get started.
Up until now, I’ve spared the details of what some of the side effects of a spinal cord injury are. In the early weeks, there were more important things for me to worry about, and soon the daily bed baths, bowel evacuations and catheter checks had become normal. This was partially because this intimate care is normal to the medical staff. Back in Bristol, I’d followed their lead and we had fallen into a sustainable, but perhaps not always physically comfortable, routine.
Imagine now that you have just met a room full of new people. You want to fit in, you want them to like you and you understand that first impressions count. Now imagine that some of the things they need to do in your initial twenty-four hours together is stick their fingers up your bum, wash your entire body and fiddle around with your todger as they check whether your catheter is working. Sort of puts you on the back foot, doesn’t it?
Because that’s what happens with spinal injuries. It’s not all long-distance shots of you lying on a bed, gazing out of the window, brow puckered as you wonder when you will next feel the sun on your skin. Instead, the camera is up close; you’re worried that you haven’t showered for two weeks and it can frequently be very personal. Not only have you lost the movement in your arms so you can’t wash yourself, but you also have several important messages that are trying to travel down your spinal cord but can’t reach the right station.
The first is to your bladder. The sphincter muscle that controls the release of urine from the bladder is rendered useless, which is really common for people with spinal cord injuries. Sometimes, it is left loose so you have no control over when you pee, but more commonly it is left shut and the messages from your brain are unable to tell your bladder it’s full and should open. If your bladder overfills it will stretch, leaving permanent damage, and it can also cause serious problems with your kidneys. I was still under anaesthetic when my catheter was inserted so I didn’t feel anything, but every day nurses would have to collect the bags of pee I produced and often check that the catheter was in place and clean.
The second, even more personal issue, is bowel management. Following a serious spinal cord injury, a lot of people are unable to poo for lengths of time and digestion takes a lot longer as well. So, every morning I would have a suppository popped up my bum and also a nurse would try to use their finger to pull the sluggish deposits from inside me. All the jokes my mates used to bandy about concerning gloved doctors and prostrate examinations had become a daily experience. The cherry on top was that the nurses would then inspect what had come out of me and record its consistency by comparing it to the coincidently, but aptly named, ‘Bristol Stool Scale’.
Dignity … window …
I knew that it would become just another part of my daily routine once I got used to the nursing team, but in those early days I had to find a quick way of relaxing. The ability to switch off is very important when you need to leave your body for a bit. Distractions and refocusing your thoughts are always a winner but, for a quick fix, I like to take myself away with some music – the ultimate, instantaneous focus shifter.
That’s when I came up with the brand-new, soon to be charting, Spotify playlist: ‘Top five songs to have your bowels evacuated to.’
And, like all good playlists, it has a start, middle and end. You’re welcome.
‘Help!’, The Beatles
‘Under Pressure’, Queen and David Bowie
‘Hold Back the River’, James Bay
‘Landslide’, Fleetwood Mac
‘All Right Now’, Free
You may think my music choices suck and a bit of thrash metal is what gets you to that better place. But that’s the point. Make a playlist of your own that you can’t help but tap your finger to. Unashamedly use those songs, laugh at your situation and squeeze every bit of mood-boosting joy out of them. They’re not a long-term fix, but they can be a very welcome plaster when they’re needed.
I would like to say that the next morning I’d woken up with the same positivity I’d left Southmead Hospital with, but one of my worst nights of sleep had put a dampener on my spirits.
Firstly, plastic curtains do not block sound. I might as well have been sharing a large bed with seven other men. There was the expected snoring and checks on each of us at all hours. But there was something else as well. A couple of these guys had sustained recent brain injuries and I’d never experienced what effect this can have on people. They were distraught, crying out in the night, confused. It was immensely saddening that they had to face the struggle of finding their way back alone. It helped to put my own concerns into perspective. At least following my accident I was still me. A vertically challenged, four-finger tapping me, but my mind was still rooting for me.
After I’d listened to my new playlist and tried to make polite conversation with the nurse who’d given me my morning once over, I was pleased to see Lois and my dad appear early. Over the course of the morning a steady stream of visitors arrived. They were mainly local friends who hadn’t been able to make it over to Bristol regularly so wanted to make up for it by popping in at the weekend. Unlike intensive care, which was serious in nature, Helena Ward had a much more relaxed vibe, possibly induced by the mid-spring heatwav
e that was starting up. Here, I was allowed unlimited visitors and there weren’t the same restrictions on visiting times.
A few hours later, the ward matron came over to my bed.
‘This isn’t really working, is it?’ she said, hands on hips.
I silently agreed. I had kept on trying to reassure myself that this hospital stay was only temporary. I was only here while I waited for a place to open up at a specialist spinal unit in Salisbury.
All eleven of us looked up at her guiltily. We had been making a fair bit of a racket and four of my friends had to sit on other people’s knees as we’d run out of chairs. The physio equipment my visitors had brought in with them that morning was teetering in a corner and had infringed even further into my neighbours’ space.
The matron looked around at us all and then broke into a smile. ‘We have a side room that’s become available. If you all pitch in, we’ll get you over there by the afternoon.’
With an air of excitement, everyone grabbed a bag, apart from me of course. I contributed by managing to stop my headphones from sliding off the bed with two of the working fingers on my right hand. The nursing team then shifted into action and we were off.
Two hours later we were all settled in. I was now the proud occupant of one of the larger side rooms, which had high ceilings and two big windows. Granted, it also had bright lavender, chipped paint and three missing ceiling tiles, but it was mine. I knew straight away how lucky I was as it offered the possibility of some peace and quiet and the chance to relax.
After the initial excitement, everyone could see how tired I was. So, one by one, my mates said their farewells and promised to come back the following week. The sun was blazing and my room had begun to heat up. Without noticing it, I fell asleep.
I woke up still feeling groggy. Glancing towards the window, I realised that a few hours must have passed as the sun was much farther across on its travels. Lois was sitting in the corner of the room looking at her phone. I was surprised to see my mate, Will, sitting on the chair next to me. He must have arrived after I had fallen asleep. He was reading something on my iPad, which normally sat on the stand that hovered above my bed.
‘Good to see you, Will. Have you been here long?’ My voice was sluggish and my mouth dried out from the heat.
He looked up. ‘A couple of hours. Thought I’d wait to see if you woke up.’
I put my one working index finger to good use and pointed at the iPad. ‘What are you reading about?’
‘I was having a look through that diary you’ve been keeping about your injury.’ He shifted forwards on his chair. As a prop for the Wasps rugby team, he was a big man and the chair squeaked in protest. ‘Two things. One – you’re fucking weird. Two – you should make this public. It could help someone.’
I tried to process what he was saying before responding. ‘Two things. One – didn’t your mum teach you that diaries are private. Two – no one wants to read my ramblings. I was just keeping it to help me get to sleep.’
Lois looked up. ‘Will’s right, Ed. You should share it. There’s some great stuff in there.’
I stared at Lois.
‘Have you read my diary too, Lois?’
At least she had the decency to blush.
‘Maybe. Only once or twice, though.’
I sighed. ‘Anyone else read it?’
Lois stood up and came over to the bed. ‘Maybe your stepbrother, Chris, when he was looking for a film …’
It was at times like this that I wanted to roll over and turn my back on everyone. Instead, I had to settle with a loud huffing noise.
‘Think about it,’ Will said, leaning forwards, ‘you could help people who are facing a long stay in hospital. You know, tricks of the trade. That sort of thing.’
‘I suppose so,’ I said, reluctantly. ‘I’ll have to give it a bit of thought.’
‘I’ve got some news that will cheer you up,’ Lois said, bouncing on her feet. ‘The nurses said that we can bring food in from the local restaurants. I was thinking—’
‘A roast from GPT?’ My mood had suddenly lifted. ‘With extra colly cheese?’
‘And extra crackling,’ Lois responded.
She knew me well.
On Monday morning, Pete was by my bedside at 9 a.m. on the dot, wearing a Kappa T-shirt and a big smile.
I’d had a rough night as I’d knocked the buzzer off my bed and had needed the cough machine to clear my chest. It didn’t feel like I was drowning like it had back in Southmead Hospital, but it was still very uncomfortable. Unable to call out for a nurse, I’d had to wait an hour until someone passed by and heard my gurgling. I had coped with the hour by practising mindfulness and concentrating on my breathing. It hadn’t helped to clear my lungs, but it had helped prevent me from spiralling into panic.
‘So, we’re going to do your ASIA tests and then make a plan,’ Pete said.
‘Sounds good to me.’
Off he went – pulling, pressing, watching.
He finished off by scratching the bottom of my foot, like my friend, Murph, used to do for hours back in Southmead Hospital. My leg jerked upward in its automatic response.
‘That must be a good sign,’ I said.
‘It is and it isn’t.’
‘Do it again.’
‘I shouldn’t really,’ Pete replied. ‘It will only reinforce the automatic response. You have to be careful with it and only do it a few times.’
I thought back guiltily to all the hours my friend, Murph, had spent scratching the bottom of my foot. I really hoped we hadn’t done any permanent damage.
Half an hour later, Pete had the results. ‘Well, it’s better than last time. There’s a bit more sensation in your right hand but still no grip strength. And, of course, there’s no movement at all on your left side. According to the ASIA test, it’s still unlikely that you’ll walk again. I imagine it’s not the news you were hoping for.’
‘Even with my moving toe?’
‘Even with your moving toe.’
I tried to process what he was saying as he slung the clipboard onto the end of my bed.
‘But what do they know, eh?’ Pete continued. ‘I think we’ll have you up and about in no time.’
I stared at him. ‘Really?’
This was the first time anyone involved in my care had said this.
‘Yes, and I’m going to do everything to help you get there. We’ll start with trying to get you to sit up.’
I grinned at him. ‘So far the majority of my rehab has revolved around trying to pick things up and occasionally throw them at people. I think I’m ready for something a bit more constructive.’
Sitting up was not going to be as simple as Pete and a couple of nurses hauling my top half upwards and quickly stuffing a few pillows behind me. Instead, my bed would have to be raised by a few degrees over the next two days for a couple of hours each time. If they had sat me up straight away I would have passed out. This was because I’d been flat on my back for three weeks and my body had forgotten how to regulate my blood pressure. I’d already been raised to twenty degrees in Southmead, but it was time to push it a bit further.
As Pete pressed the button on the side of my bed and the top half of it slowly raised, I began to feel dizzy, my head swirling as if I could feel the blood moving through it like waves. He stopped for a moment and we waited for the threat of me fainting to clear. I was no longer looking directly at a ceiling; instead I could see the top part of the wall – I wanted more! As soon as I was ready, he pressed it again and I came up further until he stopped it halfway.
Forty-five degrees. It might not sound much to anyone else, but it gave me a whole new perspective. For a start, I wasn’t looking directly up Pete’s nose any more, which was the main viewpoint I’d had of all my visitors up until now. When I was able to fully sit up, it would also allow me to eat a meal with less chance of choking and begin my first proper physio sessions. I had a new short-term goal to aim for.
T
hat evening, after everyone had gone, I looked back at one of the most productive days I’d had since my accident. Okay, forty-five degrees was a pretty slouchy way of sitting up and you wouldn’t do it in the office, but it was halfway to fully sitting up, and I believed that with Pete (literally) behind me, I could achieve it.
I hadn’t felt this hopeful in a while and it made me think of everyone else lying in their hospital beds around the country. How were they doing right now?
My friend Will might have been right: perhaps I could help a couple of patients who had just arrived in intensive care or a neurological ward. Perhaps I should give it a go. Turning on my iPad, I thought about what I should say. Lois had suggested I post the first blog on Instagram as I already had an account and a few of my friends might share it, which would give it a chance of reaching the people who most needed it. It seemed like a good suggestion.
I opened up my account and scrolled through what I’d posted that year. Four posts in four months. And one of them was a photo of a highland cow. Hardly the stuff of social media influencers.
I sighed. This was way out of my comfort zone, showing any sort of vulnerability or weakness had always been frowned upon in my rugby career. Would this even reach the people who might need it?
Well, no one’s going to see it if you don’t post anything.
Good point, well made.
But where to start?
At the beginning. And maybe with an introduction to yourself.
The only option I had was to tap the post out with the knuckle of my index finger on my right hand as I couldn’t straighten the finger enough to use it to type. Although mobile, all of the fingers on my right hand curled around and were clawed. Thirty minutes later I read over what I had written:
