27
New skills
The other physio sessions were in the gym. Most of the time Aimee would be there with Bowie, which gave me an unreal lift to my mood, especially since Bowie was oblivious to absolutely everything.
The staff loved her. She’s a happy child, and not at all shy. Seeing a toddler running around in the hospital tends to put a smile on everyone’s faces. The staff got to know her really well, as did the other patients and their families. When she came into the gym, she’d have her own things to play with. Then I got to play with her when I was on the plinth, and we’d have a cuddle.
In the OT sessions we continued to play our little games. Having that regular reminder that I could still do lots of stuff with her helped me get through the day. Getting Bowie involved was a smart move by Dave because it made me try extra hard.
I was still struggling enormously with my hands, but something like picking up sticks was quite easy because you can manipulate them, but it was the small stuff like marbles or coins – objects that are heavy, hard, smooth, flat or round – that was really difficult, especially since Dave would insist that I did things the ‘correct’ way.
Writing was hard, too, because I couldn’t hold a pen. We tried jamming it between my fingers, but it would still squeeze out – I couldn’t keep it in place. Dave fashioned a plastic holder for the pen that I could put my fingers through, and I used that to practise.
The other thing he needed to look at were my eating utensils so I could eat on my own. They grabbed a bunch of cutlery and welded hooks on so that I could wedge my little finger through one end and my index finger through the other. This allowed me to hold a spoon or a fork, which meant I could shovel food when I ate. It wasn’t pretty, but at least I could do it on my own, rather than have someone feed me. Those were the sorts of things that we worked on in OT, endlessly going through trial and error, learning new ways to make my hands useful again.
The other important goal I had was transferring. When I finally had the full assessment of my level at Royal North Shore, they tested me to find out which muscles I could turn on and those I couldn’t. For that first period when I was getting slung onto the plinth in physio every day, I was just doing triceps exercises. There is a way to transfer without triceps, but if you’ve got them it makes it a whole lot easier. We started with half-kilo wrist weights and then gradually moved on to heavier and heavier weights. I would lie flat on my back with my elbows pointed up vertically and lift my hands above my elbows over and over again. We worked on that muscle group intensely for that couple of weeks, along with pushing the wheelchair.
When Dave first discussed transfers with me, I knew what was involved because I’d seen other people doing it in the gym, especially the low paraplegics, who had full use of their arms and some core muscles. They were hopping in and out of their wheelchairs pretty easily. It always came up when we talked about what the most useful abilities were.
If you can transfer, you can get into a car, get onto a lounge or get onto the ground. The world opens up; you are more independent. And I was determined to get there as quickly as possible.
After the first week or so they started showing me the exercises I needed for transferring, even though I wasn’t quite there yet. They brought in a slide board, which was a piece of perspex about two feet long. The idea is that you park your chair next to whatever you want to get on to, then you wedge the board underneath your thigh so that it straddles the gap between the wheelchair and where you want to be. It acts like a bridge that you use to slide your backside across from one place to the other.
As soon as they brought the board out I was keen: ‘Okay, let’s try it now.’
I had the physio guys there, and the first thing I had to do was to try and get around the wheel that was between me and the plinth, because I was sitting back in the wheelchair. I definitely didn’t have the strength to lift myself over that wheel, so instead they grabbed me behind my knees and pulled me forward, which brought my bum to the front of the wheelchair. I was now in a fully reclined position – and this was when I was still struggling to sit up on my own. I could just about do it by locking out my elbows. Then it was a question of trying to get from point A to point B, across the board in a series of small slides.
The first couple of times I tried to transfer, I put everything into it, and I hardly moved. It was more about the skill than the strength. Once I had tried a few times, my mind was in full calculation mode: Can I could do this? I started by going slow, creeping along half-inch by half-inch. It took me about ten minutes to move a foot, lifting and sliding, stopping frequently to take a breath, and eventually I got to the plinth. Then it was high-fives all round. It was a big thrill, like I had conquered a mountain. I felt good, but I still had such a long way to go.
The transfer became my sole focus then. It was going to build my triceps just as much as doing the weights on the plinth. The next goal was to get across that slide board as quickly and efficiently as possible. My hope was that those exercises would build my arms up enough to be able to transfer in one go, like I had seen other people doing.
The last ten minutes of each session was dedicated to stretching and keeping the range of movements in all my joints. I was pretty flexible anyway, from surfing, but I remembered a funny story my chiropractor had once told me. He said that when people are knocked out, they could basically be bent up into a pretzel. Once you take away the limits set by your mind, your body is actually a lot more flexible. What I discovered, now that my mind was no longer in total control of my body, was that I could bend in half. That turned into my new party trick. I’d be sitting on the plinth, leaning forward, and I could actually have my head resting in between my knees, and then I could pull my feet up above my head. I was surprised at how elastic my body had become. I kind of impressed myself as I did it over and over.
Once I was properly assessed, I learned that I was the same level of injury as Serge, the gymnast, but he’d been in hospital for a good three weeks longer than me. I was forever watching him and thinking to myself, That’s where I’ve got to get to. He was only a little guy. At that time, I was still about ninety kilos, so there was a lot more of me to lift than there was of him. I also discovered that there weren’t any other patients in the same position as us – our level made up just a tiny percentage of spinal cord injury patients.
There were a lot of people in the unit with injuries around C4, C5, where that curve in the neck is, and they were only really able to move their shoulders up and down. Some had one little bicep, which meant they could bend their arm at the elbow. Then there were a couple of us around the C6, C7 level. The rest seemed to be people from T4 to T12, who all had the full use of their arms and hands, right down to the T12s, who also had their core muscles, allowing them to sit up without holding on.
I was looking at those T4s with a bit of jealousy. Everyone wants their bowel and bladder control back – that would be the first thing – but I just wanted my hands. I was constantly looking at guys like Brendan and the others who were doing all the normal tasks with their hands. It was nothing for them, second nature. They might have been sitting in a wheelchair, but they could still do a lot of things. It was a super frustrating thing for me to get over, having my arms but no fingers. I used to play guitar. I can’t play guitar now.
My head would tell my body that I should be doing certain basic things, but my body wasn’t able to do them yet. I’ve always been an impatient person, so that didn’t help. I wanted results right there and then. There was a constant battle in my head. I would come away from a physio or OT session feeling some satisfaction that I’d achieved a goal, but then I’d also realise just how minor that goal was, and fret about it.
28
Dark times
Whenever I thought about being a dad, I had dreams of my kid running into my arms, and I would pick them up and throw them in the air. That was an image I had cherished and looked forward to my whole life. Now I knew that I wa
sn’t going to be able to do that with Bowie anymore.
The glass was half-empty sometimes, but even though my mind would go to the dark thoughts of I can’t do anything with Bowie – I could switch to, No, I can hold her and have cuddles; I can play games with her. The positives felt bigger than the negatives most of the time, which helped get me through the long process of rehab.
Another thought that helped was reminding myself that I never chose this. I could hold my head up high, thinking, If this had happened to anyone else, how would they be coping with it? I worked to keep that at the forefront of my mind: I might not have chosen this, but it happened to me, so I just have to get on with it. Even though I felt like I had been ripped off and my pride had been stolen, most others would feel the same way.
But I had my real dark times too in those first weeks when I was coming back from sessions exhausted because my body wasn’t used to all that physical activity and my brain was full. I’d go into a hole where I’d find myself focussing on my limitations. I couldn’t pick up a goddamn marble or a stick … I felt like kicking everything away. Being the type of person who wants to do everything right the first time, I took my frustration out on those closest to me. I had the underlying feeling that my life was fucked – that’s what’s in everyone’s head after spinal cord injury. I was keeping a lid on it, but I started getting frustrated at people who would jump in and do stuff for me. I still had that to sort out in my head. I was really independent before. I’ve been like that since I was a kid, but now I was unable to do things on my own. All my family wanted to do was help; they were going through this whole thing as well. But I was at the centre of it. I was going through all this rehab, whereas they were on the sidelines, without the medical support and education I had.
Because I’m a ‘learn on the job’ guy, each time I picked up a cup was going to put me closer to independence than if somebody handed it to me – practice makes perfect. I was trying to learn all these new hand skills, so when somebody picked up a cup or pen for me out of kindness, it gave me the shits. I didn’t want to only practise in the OT section; I wanted to work on practical tasks throughout the day, same as using the manual wheelchair. I needed to focus on real-life situations, because that was going to get me back home sooner. Having been stuck in bed for so long, I wanted to accelerate the process.
So I resented when anyone would interfere in that process and not allow me to get things myself. It was well intentioned, but eventually I lost it.
Mum was only trying to work through seeing her son helpless in hospital, so without thinking she would pick things up and give them to me, and I’d react: ‘Fuck! What did you do that for?’
I would try to grab things out of her hand and put them back into the position they were in before, so I could pick them up myself. My frustration would spill out in curses and irritated looks. And then she’d get upset and say, ‘But you’re my son.’ After an outburst, I’d realise that those close to me were going through the whole learning process too. Oh fuck, come on. This is new to them too. Then I would think, But they’re hearing me say all this. They come and sit in OT and watch. I’ve told them what I want to do and how I want it done.
Looking back now, as a father for ten years, I completely understand where it comes from. At the time my dad was constantly saying, ‘Just because you are an adult doesn’t change the way I feel about you – you’re still my son.’
Mum never put that feeling into words, but I felt it from her, and I understand that now.
My mum is hands on; she hovers. She wants to do everything to protect her boy. My dad and I, on the other hand, have more of a ‘mates’ relationship. He will sit with me and talk about soccer or surfing, or he’ll read the paper or watch telly.
Mum and Dad dealt with it in their own way because they have quite different characters. Everyone who has separated parents probably looks back and wonders how on earth they were ever together. It’s when you’re going through a tough process like spinal cord injury that you really see what traits you get from your parents. Everything gets stripped back to raw emotion, and you have plenty of downtime to think and reflect: Right, I’m a lot like my dad here, and a lot like my mum there, and this is how it’s all formed together.
I don’t know who I get it from, but I have always been a thinker. I really enjoy it. Even as a kid, I wasn’t someone who made small talk easily. I’d much rather talk about macro issues or debate a topic. I love surfing on my own and the time it allowed me to think. I would go deeper and deeper, but I didn’t always come out and say what I was thinking. Having developed that internal dialogue early helped me through my accident and rehab.
In hospital I would talk to myself a lot at night, when everyone had gone. That was when I’d let myself have a cry. I needed to get out those dark thoughts and frustrations. But even then, I’d keep my thought process going and eventually my brain would switch back to the other, more positive, constructive side. It’s hard work and exhausting in its own way, trying to keep a sense of perspective and be up for everyone. I had that ‘my life is shit’ lava boiling underneath the surface like a volcano, but I was trying to keep it under control. I kept hold of the thought that I had to look after my family. I had to get better as quickly as I could, and the only way I would be able to do that was to stay positive, grit my teeth and somehow get through it. Complaining would get me nowhere.
To some extent I was protecting my family from my thoughts. Most psychologists would probably say that it’s the wrong thing to do, because eventually the negative lava is going to come to the surface and explode, but it was just my way.
There have been some eruptions over the years, but I feel balanced and accepting of it all. The lava is still there – it’s in everyone – but it’s a question of how well you control it.
Focussing on what I could do and would be able to do in the future was important, and getting into the manual chair was goal number one. Whenever I could see blue sky out of the window, I wanted to be outside. Even though it was the middle of winter, I could feel the heat of the sun, and the fresh air was really good after being inside for too long. That helped me get back on top when I felt like it was all too much.
When we went out of the hospital to the courtyard gardens, there were people there who had been wheeled out in their beds, hooked up to machines and drips, as well as people in dressing gowns who were seriously ill, and yet they were all out there smoking.
I thought, What are these guys doing? Are they in for smoking-related illnesses? How is this allowed?’ I was told pretty early on in my rehab about all the skin complications and circulation problems that can be affected by smoking. I wonder if I would have made it out of Singapore if my damaged lungs had already been affected by years of smoking. You’ve really got to protect your body.
Back in the gym they’d put me in a manual chair and I’d continue doing my slow laps, getting a little stronger every day. The gym was in an L shape, and it was shared between the thirty patients on the spinal ward, and those coming from the brain injury wing.
As I was cruising around, doing my laps, I saw some awful, tragic sights. There were people who had suffered a stroke or some kind of traumatic brain injury, and as they were escorted into the gym to do their work, it was quite obvious that a lot of them were having difficulty thinking for themselves. It really struck me how lucky I was. Having driven through a surfboard headfirst, I could easily have ended up with a brain injury. Shit could be worse kept coming to mind.
I became more aware of my condition relative to the others on the ward. I saw paras and wished I could do what they were doing, but I was always fully aware of the high quads, who were unable to do anything. I could quite easily have been in that position too. I sat right in the middle. I could see both sides. It gave me the goal of trying to do some of the things the paras were doing with their mobility, but I was also grateful that I had the faculties I had. That’s why learning to get around using my arms in a manual wheelchair was
so important.
29
On the move
So things slowly moved forward. I gradually got stronger. I learned to sit up on my own, and the physios started to introduce a few more exercises. Around ten days after I was admitted, the staff moved me from the acute side of the ward to the side for those waiting to go to the rehab hospital at Moorong. I was pleased when they put me in a room with my friend Max. He was such a funny guy, and we had some great banter.
Another good thing about moving to that side was meeting former patients who were back in to have surgery. There were two blokes from the country in our room who were in for minor procedures. We were forever asking them questions, trying to paint more of a picture of what we could expect for ourselves in the future.
I was the same level as the guy across from me. I still had an indwelling catheter at the time (a tube that goes up the urethra and into the bladder via the penis), but there was talk of me getting an SPC (a suprapubic catheter that enters the bladder through the abdominal wall just below the belly button). This guy had an SPC, and I’d never seen one before. I was a bit freaked out by the idea of having a tube through my belly for the rest of my life, but then I thought, Well, that’s probably better than having one hanging out of my frigging willy!
When I raised the subject, he said, ‘Yeah, come over and I’ll show you.’
He whipped his daks down and showed me this tube hanging out of his abdomen, and I realised it wasn’t as bad as I thought it would be. He explained how easy it was to manage, and that it would reduce the risk of bladder infections, which settled my mind, because I knew the decision to get one had been made. Mine was due to go in five days later.
Owen and Eleanor Make Things Up Page 19