by Ed Jackson
The incline in front of us wasn’t that steep; we’d done similar before and it would take ten minutes to get me up to the back doors of the pub again. I’d then have to get through the busy pub, trying not to hit people’s ankles with my metal chair.
‘Just go for it,’ I said to Lois, after saying hello to a couple who were walking down the mound. ‘Step on it.’
Lois pushed me up the mound at a reasonable pace. It was going really well, until the footplate of my wheelchair dug into the grass and jolted to a sudden stop.
Flying forwards, I only had time to move my arms in front of me to protect my neck.
I landed with a thump on my front and the air whooshed out of me.
There was a pause, where even the birds in the trees seemed to hush for a moment to stare down at me. And then chaos erupted.
The four men who were sitting the other side of the tree from us scrabbled to their feet and ran towards us. Over the top of their shouted questions was the trace of a scream from a woman in the pub garden. Chairs scraped back on the patio and people rushed towards us.
Blocking out these sounds, I made a quick check of myself, wiggling everything that needed to wiggle and gently testing my neck. I was fine. I made a grab for the tree and tried to pull myself up. Straining to heave myself upright, I had to give in. I wasn’t strong enough and slid down onto my front again.
Lois was down by my side in a flash. ‘Are you okay, Ed?’
‘Yes, I’m fine,’ I mumbled into the grass.
‘I’m so sorry,’ she continued. ‘I didn’t know the footplates could get stuck like that.’
I summoned all of my strength and tried again to pull myself up with my right hand. It was no good. I slid back down again, exhausted. I didn’t have the strength.
The sound of footsteps sliding to a stop near to my head made me flinch.
‘Oh my God,’ one of the men said to Lois. ‘We saw it happen from over there.’
Another man knelt down next to me. ‘Can you hear me?’ Before he waited for an answer, he lifted his head and shouted, ‘Someone call for an ambulance.’
‘No!’ I said, as loudly as I could. ‘I’m fine. Please don’t call for an ambulance. It’s not necessary.’
‘Should we roll him?’ one of the men said to another. ‘Perhaps someone here is a doctor and could help.’
‘Oh, that poor, poor man,’ a woman said from further away.
My cheeks burned with shame as a small crowd gathered around me, all discussing what they should do. I was still lying flat on my face and all they could see of me was the back of my neck-braced head and my backside.
‘I just need help getting back into my wheelchair,’ I said.
Only Lois seemed to hear me.
‘We just need to get him back into his wheelchair,’ she said, as calmly as she could.
Everyone stopped talking and turned to her. She pointed at the two biggest men. ‘You two. If you could hold Ed under each arm, I’ll support his head.
She bent down next to me and put a hand on either side of my neck. ‘It’s okay,’ she whispered. ‘It’ll be over in a moment.’
I felt myself being lifted and then straightened. Someone pushed the wheelchair towards me and I was able to take a step back and sit down in it.
I looked up to meet all of their gazes. Some grass was still stuck to my face and Lois stepped forwards to brush it away. Everyone stared back at me – some were wide-eyed with shock, others were frowning in concern.
‘Is there someone I can call?’ a man asked, holding out his phone. ‘A friend or relative?’
‘No, no. It’s fine. Thank you,’ I said.
When they wouldn’t part to let me through, I realised they needed more before they’d let this wheelchair-bound man depart. ‘Thanks for your help. Very much appreciated. Will be on my way now. Thanks again.’
My cheeks were still burning from the embarrassment of it all, but I had to force that down to smile at them reassuringly.
Lois moved behind me and pushed the wheelchair over the peak of the mound. I could feel fifteen sets of eyes on the back of my head as the misbehaving wheelchair juddered into the car park.
We were both quiet on the drive back to hospital. That feeling of helplessness had stayed with me and I couldn’t shake it off. I was 28 and had become either the object of pity or panic. There was no middle ground for me. I stared out of the window and for the first time in weeks, tears began to form. I quickly blinked them away before Lois saw them.
It was the first time I had encountered the general public’s reaction to something happening to a disabled person. Back in the cocoon of hospital, I was normal, one of many patients amongst his peers. We all misjudged our transfers sometimes and took a tumble. The medical staff were used to it, so they reacted calmly, checked us over and put it aside. Outside of that environment, my fall had become a tragedy, something people would tell their friends and family about. I knew they had all meant well. I knew they were good people, but their reaction had reduced me to feeling like a victim or a child. Someone who wasn’t spoken to, only about. Never before had I experienced people panicking about me – I was supposed to be the kindly, young man who helped others out.
Still staring out of the window, I reached over and took Lois’s hand. I gave it a squeeze. ‘I want to walk again.’
She gave it a squeeze back. ‘I know.’
I had ticked off everything on the list. All that stood between me and being discharged was having my catheter removed. After the last attempt to remove it, I’d been told that they would try again in a few days. Three weeks had passed, and I’d been informed that because of the complications last time, they wanted to perform a cystoscopy so they could check on the false passage that had been created. That was fine – better safe than sorry – but, since then, I’d had no word on when this would happen. My sensation was improving down there and I wanted to have another crack at having my catheter removed. I’d waited three weeks, frustration starting to nibble at me. In the end, I persuaded my consultant to chase up urology.
Finally, there was some news: it would be at least another three weeks until I could have the urodynamics test, a small, routine procedure that I needed.
I mulled over what to do before pulling out my iPad and typing out a message on Instagram:
I don’t know what is going on and why no one can/will perform this simple procedure for me, all I know is that I feel caught up in something bigger and I’m helpless to do anything about it. I feel sorry for the nurses, doctors and other staff who struggle with the inefficiencies of the system, but most of all I feel sorry for the people actually suffering at the hands of it. Somebody somewhere is waiting for my bed to start their rehab and they are having to delay their recovery as a knock-on effect of my situation. That doesn’t sit well with me.
The next morning, I was told that there had been a cancellation in urology and they could perform the cystoscopy that afternoon.
I was always aware that the odds were stacked in my favour. My dad used to work as a GP so understood how the NHS worked, my blog had gained some attention and I had a supportive circle of friends and family. On this occasion I had used my blog to show the hospital that they had fallen down on this point. I knew they were reading it, as early on in my stay the head of marketing had come and introduced herself. Nothing was said, but she made it clear that the hospital was aware of the blog and hoped that my stay was going well.
My problem with urology was quickly ironed out when I pushed for it through a medium the hospital was wary of – my blog. If I hadn’t done this, I could have been in hospital for another three to six weeks.
As well as sometimes lacking joined-up thinking between the departments, the NHS is woefully underfunded. We are all aware of that. We are also understandably proud of our NHS and accept the mantra that it gives us the best possible care. The provision of free national healthcare is something to value. But when the system is broken, then it cannot provide th
e best possible care. Knowing this, I was left in a bizarre position with a couple of the doctors when I was asking for more physio.
Often, with my dad by my side, I would ask them outright, ‘Would more physio help my recovery?’ Most of them would admit that it would, but a couple tried to tell me that it wouldn’t, that there was no evidence that more than three hours of physio a week would help. This is not true. The vast majority of studies show that early intervention and volume is what people with spinal injuries need to make the maximum recovery. They had tried to use their status as ‘doctor’ to override what I knew to be true and many of their colleagues had admitted to me was correct.
As I spent more time in an open ward, it became apparent that others didn’t have my benefits and privileges. Patients would accept what they were told, that extra physio wouldn’t help them, that the aim was to get them into a wheelchair and no mention was made of them walking. It wasn’t that the individuals who worked in the NHS were happy with this arrangement; it was the system that constrained them so they couldn’t provide the full spectrum of rehab that the patients needed. Understandably, some of the medical staff would become frustrated with these constraints and move to the private sector. The NHS was leaking valuable members of its profession.
It all comes down to funding. There is no ‘National’ in the NHS. Each region is split into separate hospital trusts and each is competing for limited funding with growing demand. Therefore, to access funding, the hospitals have to satisfy certain criteria. Like schools who are forced to show their worth through exam results, I have been told that spinal units gain their funding through turnover. This suggests that a hospital may be under pressure to get a patient into a wheelchair and out the door as quickly as possible. I had often wondered where I would be if I had accepted my original prognosis.
Whilst the NHS is waiting for more funding, an avenue to consider is what other resources the patients have, such as friends and family who are able to help them with their physio. However, it must be remembered that many people don’t have friends or family who are able to visit regularly because of work or family commitments. As with most things in life, not all avenues are open to everyone.
In two days everything had flipped. I had gone from facing another three to six weeks in hospital to being discharged the next day. Mum and Dad rallied the troops, and everyone shifted up a gear to get me ready to leave hospital. Lois had already reluctantly left for the airport for her netball tour in New Zealand. She had hesitated when she realised that I would be discharged just as she was leaving, but I urged her to go. We’d have plenty of time to spend together outside of hospital once she returned.
After eighty days in hospital, I was a free man. My last night was spent in the TV room with the other patients, enjoying the camaraderie that came naturally to a group of people all in the same boat. Excitement coiled inside of me and I barely slept that night, even with the ear plugs and T-shirt draped over my head that I had come to rely on to block out the sounds and sights of the ward.
At 8 a.m., Dad, Sue and my brother Josh came to shift all my stuff into their convoy of cars while I wheeled around thanking the staff and saying my goodbyes to the other patients. It was one of those moments that I made a conscious effort to remember: my last day as a patient.
When I arrived at Dad and Sue’s house, my old bedroom upstairs had already been set up for me and I bum shuffled my way up the steps. Arriving at the top, I gave a wide grin when I clocked the huge spread Dad and Sue had prepared for my arrival. Mountains of sandwiches had been balanced on serving dishes surrounded by smaller plates of pork pies, sausage rolls and deli meats. At the head of the table sat the customary giant chocolate cake that Sue insisted on for any form of family celebration or gathering, even breakfasts. As I made a beeline for a pork pie, I hoped they realised they’d set a standard now and ‘Buffet Wednesday’ would become a weekly fixture.
Friends arrived to join the celebration and I was immediately relieved of my wheelchair so they could attempt to pull some wheelies. There was even a present for me that I hadn’t been expecting. Some of my dad’s friends had set up a crowd-funding page to help with accommodation and flights for the trip to New York. It looked like it was becoming a possibility. I had something to aim for, something to look forward to. The day was everything that I’d hoped it would be.
The next morning, I was suddenly alone. Life had returned to normal for everyone else; they had to go to work or attend to the many errands that had been neglected after months of postponing everything to visit me in hospital. Wheeling myself onto the patio, I parked my wheelchair next to the outdoor dining table and gazed out over the view of the Mendips. I’m naturally a sociable person but being by myself was bliss. There would be days in hospital where I wouldn’t have any visitors and the ward would seem quiet, but I was never really on my own. There was always a doctor, nurse, health assistant, volunteer or patient only a few feet way. I suppose I never really valued personal space until I didn’t have any.
Staring out over the rolling hills, my thoughts naturally turned to my future. I wasn’t so blinded by the progress of my recovery to think that I would ever return to playing professional rugby. That realisation had come quite early on to me. People had expected me to be distraught by this revelation, and that I would heavily mourn the career I had worked so hard for. That wasn’t the case. I was 28 years old and had played professional rugby for ten years. Like all professional sports people, rugby players have a short shelf-life. You would do well to make it through to 30 without retiring from injuries. If you made it past that ripe old age, then you would retire around 34 because you couldn’t keep up with the new kids on the block.
Since my mid-twenties, I knew I had to find something else to do for the rest of my working life. I’d always had other interests and never let rugby define me. Too many people hang their hat on their profession. Take it away, and they struggle to know what’s left.
Also, rugby players are not paid like football players. Yes, we earn a decent salary whilst we can still play, but we don’t earn in a week what the average Joe would earn in a year like a lot of football players do. Therefore, I couldn’t kick my heels up and wax on about my glory days to anyone who’d listen for the rest of my life. I had to find a way to earn a living. I was registered as disabled and couldn’t walk. My options were somewhat limited, and I’d probably have to give up that childhood dream of working with the tigers at Longleat Safari Park, but I had some options and I had a feeling that more would come.
There was no rush for the moment, but I knew that it was something I would have to mull over during the coming months.
I wanted to work; I just needed to figure out where.
Chapter 12
New York, New York!
Humming Frank Sinatra’s song to myself, I looked out of the window as Pete pulled up on his Vespa. It was a warm summer’s evening, nearly two weeks since my release from hospital and we had fallen into an easy routine. I had settled into a twelve-hour day of rehab, either working with a physio or by myself. Pete would come over several times a week for sessions and I would visit the physio clinic where Kim worked on the alternating days.
I had also started seeing an occupational therapist about my left hand. If I was honest with myself, I had probably been neglecting it. My fingers curled in and I had lost most of my strength. It’s easy to forget about the smaller things when you’re trying to learn to walk again.
Wheeling myself over to the top of the stairs, I pressed the intercom to let Pete in. A few seconds later, his head popped around the bottom of the steps with the unmistakable Ferrari logo on the front of his baseball cap.
‘Pete … do you only buy Italian products?’
He nodded and then cleared his throat.
‘Fair enough,’ I said.
At least I had a good idea of what to get him for Christmas.
‘How’s it going with the crutches?’ he asked.
I’d been prac
tising for the last week and was now able to stumble around the house with them.
‘I’m still struggling to straighten my left leg. It looks like I’m a cartoon character trying to creep up on someone.’
As amusing as my left leg’s antics were, they needed to stop so that I didn’t pick up too many bad habits, or give someone a heart attack.
‘We can take a look at it this evening,’ Pete said. ‘I’ve got something that might help with your foot drop as well …’
Two hours later, Pete was on his way out and my friend, Rich, who went to school with me and Tom, helped get me ready for a shower. With Lois away, Rich had moved in to perform the role of my 1950s housewife. He would cook, help get me dressed and undressed, pass anything I couldn’t reach, ferry me to hospital appointments and even wash my hair – things only a best friend could do without me feeling awkward about it. In return, I let him have a go on my wheelchair whenever he wanted.
As he pulled a T-shirt over my head, I caught sight of his tattoo of Russian lettering that read ‘Brothers in Arms’ – the same one as I have on my forearm. It had been Tom’s idea. For years he’d bugged us both to get it done. We had refused, laughing it off as another one of Tom’s crazy ideas. I wasn’t really a tattoo person and thought Tom would let it rest, but he never did. Shortly after Tom’s death, Rich and I had got the tattoos Tom had always wanted. I wish we’d done it earlier.
‘You know,’ I said, as Rich put my T-shirt in the laundry basket, ‘the three of us haven’t exactly had the best run …’
‘You two maybe,’ Rich responded, as he got a clean T-shirt out of my drawer. ‘I’m all right. Not even a broken toe.’
‘You know what Tom would say right now?’ I mused, sitting on the edge of my bed.