Owen and Eleanor Make Things Up

by H. M. Bouwman

  Conti did an unbelievable job, and we still laugh about it today. The worst organiser put together the best night in town.

  31

  Breaking out

  With the benefit night out of the way, it was time to get back to rehab, which meant repetition, repetition, repetition. I knew I was progressing well, but I only focussed on what I did yesterday and what I wanted to do tomorrow. We started a few new exercises in OT, mostly around wheelchair skills, like trying to push up little slopes, which I was struggling with because I didn’t have the arm strength. I preferred doing practical exercises over lifting weights in physio.

  Pushing the wheelchair also meant learning the best technique for my level of injury. Because I can’t use my fingers, I had to use my palms to push. If you don’t have hand grip, getting traction on the wheels is really difficult. By now, I was in a manual chair eighty per cent of the time, trying to get accustomed to it and building up my strength.

  Because I didn’t have any other complications from my accident, I was able to focus on the skills I needed to get on with my life. A lot of the other guys I was in with had other complications, like broken bones, shoulder injuries and illness.

  I continued to keep my eyes on that name board, checking who had gone to rehab at Moorong and who wasn’t moving up the list. I was getting more frustrated now because I was being told over and over that Moorong was where the more intense rehab really started kicking in. That was one step closer to home, but here I was, sitting in the hospital, waiting.

  I guess the hospital staff could see how upset I was getting, because Jenny came and told me that, as long as I had some help, I might be okay to get day release. It sounded like I was given a furlough from prison, which was almost how it felt, waiting for Moorong. The idea of day release was both exciting and scary. Aimee was still living at the apartment in Chatswood, so we decided to spend the day there.

  There was a lot to organise. We had to worry about transport, since the apartment was a fifteen-minute drive away, so we booked a taxi. When we went to the hospital entrance, I had my first experience of a handicap taxi – a big station wagon with a bubble at the rear and a ramp for access. The driver pushed me up the ramp before locking my wheelchair down with retaining straps. I felt isolated in the taxi, because I was the only one stuck in the boot while everyone else was in the front of the car. I was expecting a rough ride, but everything went smoothly. Once I got used to the feeling of going around corners, it wasn’t a problem.

  The apartment was right in the middle of Chatswood, which is a busy suburb with lots of people cruising around, and I felt unsettled. I was suddenly aware that everyone was staring. People expect to see patients in wheelchairs in a hospital, but now I was out in the ‘real world’.

  It made me feel very different, like I was no longer a part of society. It’s not nice having people staring at you, but it didn’t last long; we went straight up to the apartment. I discovered that Aimee had set up a nice lunch inside. It was a small place, so it was hard to manoeuvre around and work out where to sit, after the wide-open spaces of the ward and the gym. Aimee was there with Bowie, and Mum had come down. David and Kirsty were there, too, and we spent the day canned up in the apartment. The weather wasn’t nice, and I didn’t have the strength to push around outside, but it was good to be away from the hospital with my family. It was like having a day off – talking and hanging out like normal people do – but eventually the time came for me to leave.

  The hospital had given us a number to ring to order another handicap taxi. It was already past four o’clock – the time when I was usually in bed – when we called, so it had been a big day. I was exhausted. Everyone else had gone, so it was just Aimee and Bowie there with me when the taxi pulled up. I thought I’d be okay to go alone as I was going to be dropped off at the door of the hospital.

  I said goodbye, and the driver loaded me up and locked me in. Once he closed the door, I sat there looking at Aimee and Bowie out on the footpath, and I was overwhelmed by intense loneliness. I felt like I was in prison – a prison of my own body. I tried really hard not to break down in front of Aimee and Bowie, but I had this horrible feeling of being locked out from life, and that feeling grew even more intense as we drove off, knowing they were standing out front, outside of my world, watching as I faded into the distance.

  I spent the whole drive back sobbing to myself. I’m stuck in a chair, locked down in the back of a taxi, heading back to a place where there’s nobody waiting for me …

  When we got to the hospital, the driver unloaded me by the back door. As I went in and rolled down the familiar hallway, I instantly felt better, almost like I was at home. No-one stared at me. I was moving around on my own, on flat, polished floors, but I also knew that the nurses and other staff were waiting for me on the ward, seven floors up.

  It was about 5.30 and already dark outside when I rolled into the ward. It looked totally different. Instead of lots of people hanging out in the waiting room, it was virtually empty. There were fewer staff around, too. It was the first time I’d been on the ward when most of the patients were back in bed.

  I said to the nurses, ‘I’m home,’ and signed back in. Then I asked if I could go to bed.

  ‘No,’ they said. ‘You’ve got to wait until seven o’clock now.’

  I felt like a big kid who had stayed up past his bedtime. This was a little achievement for me. I had grown up …

  I had a couple of hours to kill, so I decided to use the time to explore the hospital while there weren’t many people around. I cruised down the hall, checking out the after-dark scene, the nightlife. Of course there was absolutely nothing going on, but it helped me push back the loneliness I’d felt in the taxi and replace it with a feeling of triumph. I hadn’t stayed up this late before, and the world wasn’t falling apart. I was still going to be in bed at 7.00, which seems silly now, but that didn’t dampen the feeling. When I got back to the ward I explained to the nurses how good I felt, and they were happy for me.

  In practical terms, the day had been fairly easy, and I set a new goal: get out of the hospital every weekend. Nothing happened on the weekends anyway, not without the physios and OTs around. I wasn’t sick and I had plenty of help, so taking regular excursions made sense.

  The week after my first excursion, I spoke to my physio and OT about what I needed to improve to achieve my new goal. ‘I want to be able to go out regularly, but not just to the apartment. I’d like to venture out.’

  David the OT ramped up pushing the wheelchair and other skills-based routines to build up my stamina. Meanwhile in the gym, the physios continued working on the strength I needed for transferring, along with mixing in basic stretching exercises.

  When I say I was learning wheelchair skills, I wasn’t doing anything complicated. Dave was just showing me what I might be able to achieve based on the muscles I could still use. As with swivelling my hands and locking my elbows out to hold myself in a sitting position, it wasn’t about strength. It was about technique and understanding how my body now worked.

  That’s something I really learned going forward. Even though you do need strength for some things, it’s seventy per cent skills and technique, and only thirty per cent raw power. This was relatively early on in my rehab, but I do remember Dave was pleased to see how I responded. He said that I was very quick to master the skills, but I already knew that from my soccer days where I focussed on ball skills and the technical aspects of the game rather than fitness. Dave was confident that I’d do well for my level, because I could work out these skills easily, and even come up with my own ways of doing things. I am skilled in the art of cutting corners …

  When the next weekend came, we went through the same process with the handicap taxi. The next step would be learning how to transfer into a regular car, but I wasn’t there yet. When we got to the apartment, Mum and her husband, Tim, were there with Aimee and Bowie, and we decided to go down the street for a roll and have a look around C
hatswood.

  At this stage I was still getting pushed around more than I was pushing myself, but I kept working on it. I tired pretty quickly and someone would take over. The paved streets made pushing a lot more difficult than the smooth hospital floors I was used to. We had to deal with gutters and other urban obstacles, so the rest of the family was learning their wheelchair skills too, working out how to get me up and down the kerb without dumping me in the street. I was in the old-fashioned heavy chair with big plastic wheels. Still, it was a wheelchair, and it was getting me around.

  We were in the main shopping area when I started heading down a slight hill, with my family hanging off the back of my chair like a human anchor. I knew that I was looking at things differently now, observing things that very few people would notice – people’s hands and fingers, how they were sitting. I was suddenly aware of all the stairs and other challenges of my surroundings, things I never would have noticed before the accident, and it didn’t feel great. I could sense people staring again, too.

  That was when I glimpsed a guy in a wheelchair out in the real world. Thinking back, he was obviously a lower-level para, and he was at a table having a coffee. He was sitting upright, and because he was behind a table you almost didn’t notice the wheelchair – I wouldn’t have before – but I looked at his chair and thought, Wow! Look at his wheels. He had these fandangled ‘Spinergy’ brand wheels with hardly any spokes. They were like nothing I had seen in the hospital. There this guy was, in his fancy wheelchair, sitting by himself, having a coffee

  I had seen Barney Miller’s wheelchair and was impressed by what he was doing, but we were still in a bit of a bubble in the hospital. This was different. This was out in the world, and this guy made being in a wheelchair seem totally normal.

  As I rolled towards the guy having his coffee, he could sense I was staring at him. When we passed, he gave me ‘the nod’, and I gave him ‘the nod’ back, which I found funny. I’d experienced ‘the nod’ before. It comes when you’re driving along in certain cars, like an old Valiant or a kombi. When you pass another driver in a similar vehicle, you give ‘the nod’. You’re part of the club.

  We continued down the corso, and I was still getting the stares, but I felt more insulated from them because I had my family huddled around me in a semicircle, hoping I wasn’t going to fall out of the wheelchair. It reminded me of sitting on the plinth in the gym with physios hovering around me, holding their pads to stop me from falling over.

  Because I wasn’t pushing that much I had Bowie on my lap in a big bear hug so she wouldn’t fall off. Those were times I really cherished, when I could give her a hug and cuddle. Some people were smiling at me, which was a nice change from the outright stares.

  We made it to the shopping centre and onto smooth, polished flooring that was mainly flat. I looked up and said, ‘Right. Time for me to push.’ Aimee took Bowie off my lap and I slowly pushed around the place, taking in my surroundings. This was the first time that I’d been in my wheelchair in a crowded environment, and it immediately struck me that nobody could hear me.

  I felt like I was talking in my normal voice, but without being able to use the muscles in my diaphragm to project, I could only speak softly. At first it didn’t register that I was having to compete with all this other noise, especially since I was sitting down low. I tried to talk louder but it had no effect. I used to have a big, deep voice, but that was gone for good. I grabbed hold of Tim and asked, ‘Could you hear me just then?’

  He looked puzzled. ‘Oh, no. Sorry. I didn’t hear you.’

  I thought, Holy shit. Not only have I lost my body and my ability to do basic things for myself, but I’ve also lost my voice. I’ve lost so much, and now nobody can even hear me. I knew that it was only going to be a problem in crowded places, but I like going to crowded places! This was going to have a massive effect on my life.

  We kept going. The others were looking in the shops and taking everything in, while I was taking in everyone looking at me.

  Eventually we got to a slope so tiny that none of us would have normally noticed it, except that I was getting slower and slower, almost grinding to a halt. No-one could understand why. Someone even asked if Tim had a hold of my wheelchair. He raised his hands and said, ‘No, no.’

  We all realised at once that we were on a little hill. My first reaction was, Oh, my God. But then I thought, Nope, let’s try and do this.

  I had been practising for this with Dave in OT. There was a small slope outside the hospital, and I’d been trying to push up it, but I kept failing. This time, though, I was on polished floors, and that could make all the difference. I went for it, with Tim behind me as usual. I felt like I was competing in the goddamn Olympics of small-slope climbing. It was probably only five metres long, but it took me a while until I felt I was back on the flat and the pushing was easier. I looked behind me and thought to myself, Wow, I’ve done it! That’s an achievement. I could hardly see the slope, but I knew it was there. I’d achieved something that had seemed impossible for the past couple of months.

  We spent the rest of the day outside. Even though I was still aware of the stares, I didn’t feel as out of place as I did on my first time out. We stopped to get some lunch, and I had hot chips. (I was confident about eating them, having had them a few times at the hospital since my accident in physio). I couldn’t pick up much else, and I had decided that I would rather eat junk food and be able to feed myself than have something nice but have somebody cut it up and feed me in public.

  After lunch we made our way back to the apartment. Once we got inside, Tim spun me around in front of the mirror, and we all had a big laugh because written on the back of my wheelchair was, ‘If lost, return to Royal North Shore Hospital.’ I’d been rolling around for most of the day, through the shopping centre, with people reading this message. Were strangers thinking that the people I was with had kidnapped me, or that I was generally lost? I was lucky no-one tried to return me to the Royal North Shore.

  Soon it was time to head back to the hospital. Aimee came with me in the taxi because I had told her how sad and alone I’d felt the last time I had to leave. Mum and Tim were around, so they looked after Bowie, and having Aimee with me made the journey a bit more comforting. She dropped me off and took a taxi back to the apartment.

  Now that I’d had my first major outing, I felt like I understood better what I needed in OT to make progress out in the world – my general wheelchair skills, being able to push for longer, and anything that could help me become increasingly independent. And I wanted to do all this with the least amount of equipment.

  I was still using splints to type so that I could communicate with work and other people through email, but I wanted to get rid of them. I didn’t like wearing gloves when I was pushing in the wheelchair, or having straps holding me in. I wanted to feel as un-‘handicapped’ as possible. I wanted to sit in the wheelchair like the guy I had seen having coffee. Dave and I also spoke about the trouble I was having talking in loud places. He explained that this was normal, because I’d lost the use of my diaphragm muscles, but he added that it would get better with time.

  At the end of each day I reflected on the things I had achieved and reminded myself where I’d started from. The gains weren’t a lot, but they were something. This perspective helped because otherwise I would focus on where I would have been had I not had the accident.

  When people are down on their lives, I find it’s often because they are so infatuated with the world of celebrity, image and glamour. Everyone seems to look up to the top of the totem pole, to the people who have all the money, all the fame, all the privileges, to those who seem to have more. If the top of the pole is a ten, lots of people probably think, Fuck, my life’s only a three or a four. I’ve always believed that, instead of ranking yourself against the top, how about compare yourself to those further down, to those less fortunate? I’m lucky enough to have been able to travel around the world, but during my trips I saw plent
y of poverty. I’ve always said, ‘Well, if you were to rate your life against those circumstances, instead looking up to the manufactured celebrities, your life is a ten. You’ve got it all!’

  The first step is to be grateful, then push on and keep moving forward. One half of my brain was thinking about how far I had come compared to where I’d been a few weeks back, but then the other half of my brain was comparing myself to where I was before the accident. I had a constant battle raging in my head. It was a question of where I drew the start line. It was all about coming to terms with where I’d been and where I was now. I knew I had broken my neck. I knew I had lost all my mobility. I knew that my previous life was gone, but the present was the starting point. There was the tiniest bit of hope that I might walk again, but 99.99 per cent of me knew I wouldn’t. That wasn’t me giving up; that was me being realistic. I needed to start from scratch and push forward from there. I needed to do that for my family and everyone else around me so that I didn’t become that burden I feared. I wasn’t going to be a victim.

  Aimee was still holding out hope, forever searching up treatments online, or talking to the doctors. ‘What else can we try? Surely there are other techniques or medicines to get Daz going?’

  Being the pragmatist, I would say, ‘Let’s start from here and move forward.’ We have our own ways of thinking. I never felt like I should try and have it out with her and say, ‘Look, this is it, Aimee. This is as good as it’s going to get.’

  You don’t ever want to take away someone’s hope, but it did lead to things getting weird when it came to alternative treatments and their practitioners further down the track.