It was getting late, and eventually it got to the stage where we had to be quiet. I was telling them to shush, but they were oblivious to me; they just kept cracking up. It wasn’t even a funny movie. They were getting really noisy, and eventually a couple of the nurses came over: ‘Quieten down. There are people sleeping.’
But it was hopeless trying to get them to keep a lid on it. I connected the dots pretty quickly.
Finally, Aimee and I had to go, and she looked at me, dazed, and said, ‘I can’t drive.’ It was lucky I was there, especially when we got lost in the car park because Aimee couldn’t remember where the car was.
There were a lot of laughs to be had during my time in hospital, and they weren’t all the result of special cookies. Most of the other patients had smiles on their faces and looked totally normal; they were just wheeling around instead of walking. Even the people who couldn’t get out of bed were still pretty positive. It all comes back to one unavoidable reality: what else can you do?
There were a couple of patients who were angry with the world, but they were a tiny minority.
What turned me around quickly when I felt down was to focus on my level. I might have been looking at the guys who could do more than I could, thinking, Oh, it’d be great to get to the point where I could do that. But I’d also remember that there were other guys looking at me thinking the same. Whenever I felt shaken up, I’d remind myself, Holy shit. It could’ve been much, much worse.
We shared the physiotherapy gym with the brain injury unit, and their patients were always getting walked in by staff, many of them struggling to understand where they were or what they were supposed to be doing. I would look at them and think, They’ve got their bodies, but their minds aren’t there, and I’m vice versa. I was forever asking myself, What would you rather be? Shut up and get on with it.
I met a guy who was the same level as me, but his was an incomplete injury. He could move his legs and had the function to be able to walk, but he couldn’t feel a thing. He still had to get around in a wheelchair. ‘What?’ I asked in disbelief.
‘Yeah.’ He shrugged. ‘I pretty much move most things, but I’ve got absolutely no sensation.’
He would probably learn how to walk eventually, but without any sensation to give him feedback about where his legs and his feet were, he would fall over all the time – he had no balance. And that was when I started realising, Man, this is totally weird. These injuries are crazier than anything special cookies could create!
My diagnosis was simple, because my spinal cord had almost been completely severed: Boom. That’s you. Don’t expect anything else. I was actually lucky because, other than my lungs, I didn’t have any other injuries. There were motorbike guys like Brendan coming in, who had broken their back or their neck, but they might also have smashed their hip apart or destroyed their shoulder. There were a lot of other complications on the ward. Some guys said I was fortunate because I was very symmetrical – my biceps and triceps were the same. I hadn’t even thought about that until someone pointed it out. I got out of my accident lucky, to a certain extent.
When you land headfirst and crush your neck, your spinal cord usually bursts around C4, because that’s where there is a natural curve in your neck, making it a weak point. I broke it further down towards the very bottom of my neck, so I have a lot of function in my arms for a quadriplegic. If I had broken it at C4, I would only be able to move my shoulders slightly.
If my injury had been just one centimetre lower in my neck, then I would have been able to use all my arms and my hands and fingers – I was that close! I would have been classed as a paraplegic. At the same time, if it had been one centimetre higher I would have lost the use of my arms, which shifted my mind into thinking that I should be grateful. I could’ve not come back at all, and that was the constant battle in my head. Fucking hell! Why did this happen to me? And a split second later the other little bird on my shoulder is going, You survived. You still have your daughter; you’ve still got your mind; you’ve got all these things. I still have a lot more than I’ve lost.
25
Soul-destroying
I was still struggling to deal with the horror of the morning routine, of having to go to the toilet with company, but once I’d done my business I was up for the day and off working. I could push it to the back of my mind. There were plenty of other distractions to keep me busy.
One day we went downstairs for lunch, and it was the first time that I had hot chips since the accident. It was nice to be away from the ward and eating something other than a sandwich. It was one of the only things I could eat independently at the time while I was learning how to manipulate my fingers to pick things up.
After lunch, I had a session in the gym, and the physio started by getting me onto the plinth. We were doing the usual exercises when I smelled something bad, and I could see that the physio had picked up on it too.
She said, ‘Look, Daz, you’ve got to go back to your room. You’ve had an accident.’
‘What do you mean an accident?’
‘Well … You’ve shit yourself.’
Holy hell. I didn’t feel a thing!
It absolutely crushed me, like a whole brick wall coming down on me. How could this happen? Obviously shitting yourself is something nobody wants to do, but in front of other people? It was soul-destroying, and then I was thrown back into the wheelchair to sit in my mess, where I could see it smeared on the plinth. The staff were really good about it too – unfazed and professional – but I still had to go back to bed and get cleaned up and changed.
Now I understood why some of the other patients would suddenly disappear from the gym or the OT rooms. They were all used to it as well, so it was water off a duck’s back to everyone except me. I fell into a deep depression. I couldn’t believe that it had happened to me – an adult. The nurses got me cleaned up, but I didn’t want to get back out of bed. My confidence was shot. I wanted to shut myself away, because I didn’t want it to ever happen again.
The staff could see that it had affected me deeply, and the registrar on the ward paid me a visit. I asked the question: ‘Why has this happened?’ And that was when someone explained to me that, after spinal cord injury, everything internally is still working as it used to; you just don’t have control. It’s all involuntary.
‘But why has this happened now?’ I asked. ‘Was it the hot chips?’
‘That could be it,’ he replied. ‘Sometimes a change of diet can be the trigger, something you haven’t eaten since the accident. It can end up going straight through you. This is normal and to be expected.’
I wanted to make light of it, so I said, ‘Oh God. Not the chips! What am I going to do? I don’t care about my fingers – I can’t have hot chips again!’ But once he’d gone I lay under the covers, pretending nothing had ever happened. The staff tried to encourage me to get up – it was only one or two o’clock in the afternoon – and even Aimee was there, but I said, ‘NO!’
I didn’t want to face anyone.
I just wanted to stay in bed for the rest of my stay, because I couldn’t handle shitting myself in public. I didn’t want to talk to anyone about it. I wanted to forget about it – and I hoped everyone else would forget about it too. I would wake up tomorrow, and it would be a new day. Hopefully I could box it up in the back of my mind, keep it there and never have to think of it again.
I spent the whole next day and night in bed. I was thinking, Oh, Jesus – or whoever’s up there. Why this? Is this some kind of test for me to get over? All through my life, this poo phobia was my one vulnerable thing, my Achilles heel. It was my most private part, but now it was on view for everyone – family, friends, strangers. And I didn’t even know when it was going to happen again.
My bladder was under control because I still had a catheter in and a leg bag for drainage.
The nurse called Annie, who I had got on so well with on my first weekend at North Shore, was on duty and came in to see me. She was a
ctually married to a quadriplegic, so she was good to talk to and had a great way of explaining things. The doctors, nurses and physios were very clinical about everything, very textbook, but Annie had helpful insight because she actually lived with it. I trusted that personal experience more than anything.
She’d almost contradict the information I was receiving from the doctors. They were always saying, ‘This is how it’s got to be,’ and ‘This is how you’ve got to do it.’
And then Annie would come to me afterwards with a totally different perspective. ‘When you’re out in society? No, you don’t do it that way, you do it this way. You work in with whatever’s there.’
The first major hurdle when you get smashed about and thrown down a hole is to dig yourself out, or you’re in there for ever. So I was forever battling on two fronts: work with what I still have and move forward, or spend all my time mourning what I’ve lost and just give up.
Once I got over the initial soul-destroying embarrassment of shitting myself, I tried to click my mind into being aware of my surroundings, of what I could and couldn’t do. At the same time, I was trying to come to some sort of acceptance that I wasn’t okay. I wasn’t getting better tomorrow. The only way I could recover was by getting on with it, and that would take time. Everyone knew I would, but they acknowledged it was just a horrible, horrible time for me.
Going through the whole rehab process, there were times when we spoke with social workers and psychologists, which I found mind-numbing. It all seemed pointless. But there was a peer support group that would come around once a week, with paras and quads from the community who would visit everyone on the ward. They were the ones I wanted to speak with, because they were living it every day.
They would ask, ‘Okay. So what are you doing at the moment?’ whether it was pushing around in the wheelchair, transferring or starting to talk about what I might need to do to reconfigure my house. And they would say, ‘Don’t worry about it. Things don’t happen like that in the outside world once you leave the hospital.’ I would seek out the guys who were around my level and chat with them about everyday things, from bowel issues to how you manage your catheter. The psychologist might have been good for Aimee, but I just wanted the real blunt stuff.
The peer support people would cruise around, and if anyone wanted to talk, they’d sit and talk. I found out how they were living. Some had been injured for two years, some for ten, some even longer, so it was really helpful to hear how they were living out in the community. It was their honesty and openness that helped me over time to be able to get back up and face the day.
26
Back to the water
The physio staff could see the difference training ‘on the job’ had when they watched me pushing around that heavy old wheelchair. I wasn’t trying to win a marathon or anything; I was just more focussed on learning how to manoeuvre it and seeing how far I could go. Despite my improvements in the gym, I was still going to bed exhausted at around four or five o’clock. That was the routine for a while, until one day Jenny came and asked nervously, ‘Erm … how do you feel about swimming?’
The staff were a bit unsure about asking me because of the nature of my accident. They were concerned about how I would feel going back into the water, so they had asked Aimee about it first. ‘Look, just ask him,’ she’d said.
I immediately responded, ‘Swimming? Yeah, of course I’ll go for a swim! I’ve lived in the ocean my whole life. Definitely, get me back in the water!’
The hydrotherapy pool was in demand. It wasn’t big, and it was shared by the whole hospital, which meant that they could only select a few people to do water therapy. The lady who ran the sessions was called Denise, and she came to explain what would happen in the pool. I was excited. I wanted to get back into the water somehow, even if I was never going to walk again. It would be a great feeling, and I’d be learning new skills too.
So swimming was thrown onto my timetable at the expense of one of the physio sessions. I was super keen on the morning of the first swim. I chucked my boardies on, and the staff put me in a powerchair. They put my ugg boots on my feet and wrapped me in towels and blankets. I was thinking, What have I got all this on for? You know we are just going for a swim, right?
I soon discovered why. It was the middle of winter, and I had to go on nearly a one-kilometre journey to another building on the hospital grounds. Aimee came with me, along with one of the nurses. I hadn’t really experienced the cold until then because I was inside most of the time, wearing jumpers and lying in bed under blankets, apart from darting outside to see the sun whenever I had a break. I had to go down a lift, through the kitchen and out into a long service tunnel. Gusts of cold air ripped through the tunnel, smacking me in the head like a club. I froze up instantly to a level I’d never experienced before, but we still had four hundred metres to go and I was willing the chair to go faster, just to get back inside. When we finally came out into the open, there was a glass building ahead, which was heated and held the pool.
The pool was twenty-five metres long by six metres wide and full of all sorts of different people doing walking exercises and basic Pilates. I met Denise there and the staff transferred me out of my chair and into a special plastic pool wheelchair. They took the blankets and towels off me and strapped a floatie around my back. I also had floats on my arms and one around my stomach.
Denise wheeled me down a ramp into the water. I didn’t feel a thing at first, even though I could see I was going into the water. I didn’t feel wet. The water finally reached the parts of my body where I had sensation, and I sighed deeply, ‘Aaahh, that’s nice!’
Denise carefully lifted my legs up and put a floatie around them. Then she lifted me off the chair and into the deeper water, where she laid me on my back. After feeling compressed into a wheelchair or a hospital bed for weeks, having that sense of weightlessness again felt incredible.
Denise kept asking me, ‘Are you all right? Are you sure?’
‘Yeah, I’m fine. This is UNREAL.’
Aimee was watching from the side of the pool with tears in her eyes. It must have been hard: there I was, a strong swimmer and surfer, now decked out in all these floaties. But it felt so nice, lying there. Denise walked me around the pool for a good five minutes, letting me get my senses, before she asked me to slowly move my arms against the resistance of the water, which was pretty hard work, harder than pushing the chair. She took me through different motions while she stretched my joints to improve the range of movement. It felt awesome having the water lap against the back of my head while I floated on my back, feeling weightless for the first time since the accident.
Eventually they had to get me out, so they dried me off, hoisted me back into my powerchair and wrapped me up again in the towels and blankets. I was scheduled for two sessions a week. ‘Right, we’re off. I’ll see you next time.’
I left feeling not exactly joyful but satisfied that I was doing something new. I was in my element again, although there was a niggling voice in the back of my head, telling me that it just wasn’t the same. But that disappeared the instant we went out the door and that cold wind smashed into me again. It was even worse now because I had wet skin and was wrapped in damp towels – I turned straight into an iceblock, the cold penetrating to the bone. It was a real struggle to return to the ward, and I started shivering uncontrollably. The power chair only went at a fixed speed – slow – so the other building never seemed to get any closer. Aimee was freaking out because she could see how cold I was. Once we entered the ward, I still needed to get the chlorine off my skin. I felt chilled to the bone, colder than I’d ever felt in my life, and the nurses lifted me onto the bed and then onto the shower chair. ‘Hot water,’ one nurse said. ‘That is going to be the best thing to warm you up.’
But because I had been gone for so long – it was now midday – by the time they got me in the shower there was no hot water left. I was so cold I couldn’t even speak, so they quickly washed the chl
orine off, dried me and got me back to bed. It was almost like someone had hit the red emergency button or I was flatlining, because nurses were running everywhere with heated towels and blankets, covering me up. It was two hours before I stopped shivering.
My wonderful moment in the pool had been shattered. It felt like a stiff jab in the face: ‘Here’s another thing to deal with.’
Before my accident, I had never been a person who felt the cold. I’d surfed in cold water all my life; I wore thongs in the middle of winter.
Since returning to Australia, I felt a chill most of the time and often threw on a beanie or hoodie. But this was a depth of cold I had never experienced before.
I couldn’t warm up, and all the shivering wore me out more than any physio session. Because I’d come out of the heated pool, I was dehydrated, so when they asked me to drink cold water it was the last thing I wanted to do. The nightmare went on for hours.
I tried to think it out. How am I going to do this? It takes me fifteen minutes to get to the pool and fifteen minutes to get back, so that’s thirty minutes of pain to enjoy twenty minutes of pleasure. Is it worth it? I reckoned it was, for that sensation of being in water again. I decided to put up with the pain.
After that first experience, I piled the extra layers on, knowing now what to expect. But that sensitivity to the cold is still with me today. It’s just something I have to deal with.
As time has gone on, this remains one of my biggest struggles. My injury has affected my internal thermostat and made me more ‘cold-blooded’ than the average person. My loss of mobility has caused my blood circulation to slow, and without the constant body movement that produces heat, I can’t warm my body. I’m always on the cool side. I’ve learned that it is only radiant heat that warms me – the sun, a fire or my trusty gas heater. I can’t retain my heat so it’s all about dressing to stay warm anywhere I go. When I’ve been on the beach on some chilly weekends, I’ve had to ask someone to run and grab me another jacket, which is quite futile. I’ll get home and shiver all afternoon. I could sit in front of the fire for hours before I’ve warmed up enough. It can take a long time for my body to regulate and for me to be comfortable again.
Owen and Eleanor Make Things Up Page 18