Depending on how far forward the main axle is, a wheelchair becomes more or less ‘tippy’. Having the axle forward makes it easy to get the front wheels off the ground, which helps to get over cracks in the street or up and down kerbs. This makes pushing easier too, because you can reach more of the handrims on the wheels without having to reach behind you. Pushing the axle forward also makes the wheelchair shorter, which is good for getting around indoors. The downside is that you’re more likely to accidentally tip the chair up and fall out backwards.
As I was having all this explained, I felt like I had suddenly been thrown into a world that I knew nothing about. It made me realise how unobservant I’d been. People can be in a wheelchair for various reasons, and the wheelchair might be completely different according to the individual’s needs.
With the OTs, we were still working on the little things that I needed to be able to do with my hands. I really wanted to write, because I had to sign cheques for the business, so I spent hours and hours sitting at the table, trying to get my handwriting neater. We worked on transfers in OT as well, focussing particularly on the transfer from chair to bed, and then moving around once I was on the bed. We also spoke about other equipment I would need at home, like shower chairs and grab rails.
One of the important differences at Moorong was the communal lunchtimes. At North Shore, they would bring the food to your room and put it on a tray next to your bed, and that’s where most people ended up eating. But at Moorong, we would sit together around tables in the common room, eating and talking. Because we all ate at the same time, the food tended to be fresher. Some people would drift away after they had finished lunch, but most of us would chat until we moved on to the next session. It felt like everyone could be a bit freer and talk, because we were all in the same position. We could have meaningful conversations or just talk crap. I could sling stuff at the guys I already knew, like Max and Serge.
The days were busier, with some sessions starting at 9.00 am and the last ones scheduled for 4.30 pm. We had downtime outside of those sessions, but not a lot, because getting up in the morning and going back to bed in the evening took up time. Everyone was in the gym for their physio, so there was lots of banter. OT was a bit different because it involved more one-on-one time with the therapist.
As well as having more physio and OT, Moorong introduced an education program into my timetable. There was a certain number of modules that had to be completed by the time I left. It was all valuable information to give us the best chance to stay healthy after SCI, like how to avoid pressure sores and look after our bodies.
When I eventually left Moorong I felt like I had a doctorate in SCI. To make sure it stuck, the staff worked hard on scare tactics. When they talked about the risks of pressure sores, they reinforced the message by showing us slides of severe pressure sores that went through to the bone. Seeing blood doesn’t bother me, but this affected me more than anything. We were also reminded that smoking was one of the worst things we could do to our circulation and skin.
Not all the shock tactics worked. Sometimes when they put stuff up on the big screen we’d revert to being schoolboys, giggling, yelling out and throwing stuff. It was like being back in the classroom.
It took the first week for me to get into my new routines, and during that time I also discovered the joys of the Lizard Lounge for myself. Whenever I had downtime on sunny days, I headed to the front steps. It was a good place to chat with other quads, and that was where I met a guy called Kevin Langdon, who was C4. He was in a powerchair and could only lift his elbows up and move his forearms slightly. Kev was a former Rugby League player. I quickly bonded with him because of his attitude – he would say whatever ridiculous, quirky thing that came into his head. It was like being in a Will Ferrell movie. Kev was a true Aussie bloke. He enjoyed a beer, and he loved throwing around banter. He spent more time in the Lizard Lounge than anyone and was always there, often asleep, when I went out.
More quads spent time out in the Lizard Lounge than the paras – maybe it got too hot for them. I knew straightaway that it was going to be one of my favourite places to go. While I could just about get down ramps on my own, I couldn’t get back up them without help. Wheeling over to the Lizard Lounge was straightforward and became part of my new routine. Routine makes me comfortable, and I felt really overwhelmed early on before I started meeting people.
Max and Serge had been at Moorong for at least three weeks by the time I arrived. Because Max had an incomplete injury, he was doing entirely different exercises from me, which made it hard to compare my journey with his. But Serge was the closest to my injury level, and he was already able to do a lot more than me, so I always had my eye on him.
I decided that I would try to beat him at learning certain skills. As well as being a few weeks further along in rehab, he was smaller and younger than me, so when it came to transfers it was a lot easier for him. That still didn’t stop me from constantly looking at him and trying to get ahead.
I knew that I wouldn’t be able to do some of the things the paras could do, but in physio I focussed on getting my transfers down. I would ask the physios whether they thought I would be able to eventually transfer like everyone else in rehab. Some of the staff would say, ‘Well, yes. You should be able to do that one day,’ meaning, ‘Not next week.’ So I had all these goals in my head as to where I needed to be along the timeline. I was still using a slide board to transfer, but now I could use it to get into the car with lots of help. I really wanted to be able to do it without any help.
I already had a little taste of this, right at the end of my time at North Shore. I’d asked the physio, ‘How do people get in the car with the door and the wheel arch blocking the way? We went on the internet to have a quick look, but then I thought, How about we just ask the IT guy how he gets in his car?
Tom in IT would help us with computer issues and internet access. He was in a wheelchair because of a muscle disease, but he functioned in the same way as a low quad. One day I asked him, ‘Can we come and watch you get in the car?’ The physios took us down to the car park, and Tom showed me his technique. It wasn’t that it looked easy – he was still using the slide board himself – but it seemed easier than I thought it would be, and he explained it well, backing up what the physios had said: ‘It’s not all about strength. It’s more about skill.’
It was then that I decided I had to drive, especially after Tom showed me the hand controls he’d had fitted in his car. It was the first time I’d seen that kind of set-up, but it made sense straightaway. Up until then I’d believed I would never be able to drive again, but I had those thoughts about everything in the beginning. When Tom told me that he drove to and from work, it stuck. It was another goal I would try to achieve, starting with getting into a car instead of being locked up in the back of a taxi and tied down to the floor. I wanted to be able to get into the passenger seat so Aimee and I could go out and do something – anything. We eventually got there after a few weeks.
Transfers had started with getting into bed, which was obviously important. Then we worked on getting onto a lounge, and after that getting into a car. The passenger-side transfer was important, because everything shut down on the weekends at Moorong, and lots of patients went away for those days. Getting out and about in the community was a vital part of the rehab process, especially for overnight stays. I was just doing daytrips to Pyrmont and hanging out around Darling Harbour. Another big goal was to get stronger so I could do things on my own and have an overnight stay.
36
The fall out
Patient education modules continued all the way through my stay, and sometimes our partners would sit in on them as well, especially when they covered subjects like sexual function. I was still keen to have another child. I’ve always thought that the greatest gift you can give a child is a sibling, a best friend they can share their life with. But Aimee was less sure now that everything had changed. As time went on, Aimee backed furt
her away from the idea. I think she felt like she had enough to deal with.
Some of the most inspiring education sessions were when people who had been out in the community for a number of years visited us. We had a Paralympic basketball player give a talk, and I got to hold a Paralympic gold medal. There were also a couple of tennis players around because the Australian Para-tennis team was based on the same site at the time. Then there were people who were running their own businesses. I found those sessions to be the most beneficial, and I encouraged Aimee to come along. It was almost more important for our partners to listen to these sessions than ourselves, because it could open their eyes to see what we were capable of. But not a lot of partners actually came.
Sometimes a few of us would be sitting out in the Lizard Lounge, having a cup of tea before the talk, and we’d see the speaker drive in, get their chair out of their car, jump in and push up the hill. They’re basic things to me now, but we’d watch them all the way to the door and pick up little techniques. It seemed so effortless to them, because they had been living with SCI for quite a while. Seeing those life skills as second nature was just as significant as hearing what they had to say.
There were peer support guys coming in regularly, too, and they would tell us what we would actually need when we got home, often contrary to what the OTs were telling us. The OTs told me that I would need a hoist. They wanted me to be transferring on my own, but it was important to still have a hoist in case I had a bad day. Then I needed a shower chair, which was fine, but they also wanted us to put up rails in the shower. One of the peer support guys whispered in my ear, ‘Look, forget it. You won’t need them. That’s not how it works at home. Take on board what they’re saying, but don’t turn your house into a hospital. Just give yourself the space for turning circles – you’ll adapt to whatever’s there.’
I was lucky with the house modifications because all we had to do was change the bathroom around a bit and put in a lift between the upstairs and downstairs. But we took the OT’s advice and extended the bedroom, which wasn’t really necessary in hindsight. We were so fortunate to have the money from the benefit night to pay for the work.
We had quite a lot of freedom at Moorong compared to the hospital; guys would often take off down the street. We could do what we wanted as long as we came back.
Many of the guys I was hanging with had full use of their hands, so they could go to the shops and pick things up, whereas I was still fumbling and clumsy, so I didn’t go with them on those outings. But when they’d go for a push around the centre I’d sometimes follow and try to keep up. I’d be a bit behind because they were all paras, but it was a good way to challenge myself.
In the gym sessions my arms were becoming stronger, and the physios started getting me to do little wheelies and to try to balance on my back wheels. In order to do this they had to flip the anti-tip wheels on the back of my chair out of the way. When I tried lifting the front wheel, I experienced the first sensation of falling since my accident. There was someone behind me, but as I went backwards I got this surge of adrenaline, even though I only fell for one or two inches before they caught me.
As we practised more and more, I would almost try to throw myself backwards to see if I could get used to that falling feeling, but the adrenaline burst was always there.
I knew that at some point down the track I would fall out of my wheelchair, and I wondered what would happen: Would I hurt myself? Would I damage something? Can I break my neck again?
I had seen it happen to paras in the gym a couple of times. The first incident was a guy who was super active. I was amazed at what he could do straightaway, and they were teaching him wheelchair skills in the gym – hopping over mats and other obstacles – when he mistimed his wheelie, went falling backwards and landed on the mats. It shocked me at first, but he laughed it off, and I didn’t think too much about it.
As time went on I kept trying to throw myself out of my chair as much as I could when someone was with me. I even suggested to the physios, ‘Maybe it’s a good idea to let us fall out onto mats in a controlled environment so we can see what it feels like, because that might be the most important wheelchair skill we learn. If you’re teaching us that we need to be able to get up gutters and stuff, then we’re going to fall sooner or later, so it’s better to know what to expect.’
But they were reluctant.
I always had the anti-tip wheels on my chair down when I wasn’t practising wheelies in the gym, and I had my chair set up so it was really heavy – it was going to be almost impossible to flip over.
I used to sit back on the anti-tip wheels in a recline position because it was more comfortable, even though the staff were always telling us not to because they could buckle and it’s not what they were designed for.
Then one day the technician flipped up the anti-tips while he was working on my chair, but he forgot to flick them back down. Nobody picked up on it.
Because I had Bowie hanging out with me a lot, I’d been moved into my own room with access onto a veranda. In front of that were three steps down to a walkway that went all the way around the outside of the building, where there was a garden.
I had to go out the front, down the ramp and then come around the path in order to get to the entrance of the room, because Bowie loved to run up and down the gardens. The veranda was always in shade, so if I was with the family I used to sit on the footpath and get some sun.
I was hanging out there with Bowie, Aimee and Mum, when I went to rock back as I usually did. But since the anti-tips weren’t down, I just kept going. I felt like I was falling in slow motion, thinking Oh shit, something’s wrong here. I’m going … I’m going … And I hit the ground. Luckily, I rolled a bit so although I hit my head on the concrete I took some of the blow with my arms and body. Aimee and Mum freaked out and came running, behaving as if I had just broken my neck again.
Aimee was always telling me off for sitting back on the anti-tips. They must have had a glimpse of me going and then heard the crash. I didn’t feel injured as I lay there, looking up in the air and seeing my legs almost over my head, laughing to myself at the position I was in.
Nobody knew what to do. Aimee wasn’t sure whether to pick me up or try to stand the wheelchair upright. Mum had run inside to get help, and the physios and nurses came rushing out with bandages and first-aid gear, like this was some big event. I thought, Surely this happens all the time? Haven’t you guys seen this before? They even brought down the hoist. Can’t you just pick me up and stick me back in the chair? My elbows were scraped and bleeding, and I had a bit of a goose egg on my head, nothing serious.
All the adrenaline had disappeared by then and I had the team around me. Aimee was still in a flap. I was surprised the staff didn’t say sarcastically, ‘Oh, yep, we’ve got another patient who can’t stay upright …’ Instead, they wanted me to go back and get into bed so they could check my entire body for damage. But I said, ‘Look, I’m fine.’
In every physio session after that I kept making the point that if I fell out and was with Aimee, she wouldn’t know what to do. Eventually, they buckled and lay me on the mats in the chair, to show us how to get me upright. Aimee never let me put the anti-tips up again after that.
They had their own swimming pool at Moorong. It was smaller than the one at North Shore, but it was a nice space – and it was heated. The weather was getting a bit warmer, so I didn’t have to worry about the cold so much afterwards. I asked if I could do more swimming and less weights, because I found being in the water enjoyable. Having heard how well the swimming went at North Shore, the therapists agreed.
The pool had a lift chair to get me in the water, and once I was in we started with all the floats strapped onto me as usual. I had been in the pool quite a bit at North Shore, maybe fifteen times, so I was used to the feeling of being in the water, and over that time they had taken some of the floats off. I could lie on my back with a small float on my ankles and one on my hips. I was
happy sculling around in that position, but they decided it was time to flip me over onto my front to start working on a freestyle action.
It was hard to get the range of movement I needed at the beginning. I hadn’t been doing that kind of arm rotation until then, and I initially couldn’t get my hands out of the water. But we persevered with it twice a week until I could propel myself forward and get my head out of the water to take a breath. I was doing all of this in board shorts, and I would stick to the sides for laps. The pool was twelve metres long, and I could only swim half of that before I needed a rest. I had to build up my stamina so the physio would let me go. As I got stronger, I was eventually able to do a lap on my own and turn at the end. All they had to do was help me into the pool, add a few floats where I needed them, and then off I would go at my own pace. I’m sure it was a very ungainly way of swimming. I kept my head down and tried to hold my breath for as long as I could, to see if it would help increase my lung capacity.
One day I thought I felt a tap on my shoulder. I kept swimming but the physio tapped me again, and I realised she was calling my name. I stopped and looked up, and as I turned over I realised my boardies were down around my ankles. I had been swimming with my bum bobbing along, like it was some hairy white turtle following me up the pool. There was nothing I could do to pull them up, because whenever I stopped my feet would sink, so the physio had to jump in, grab my boardies, pull them up to my waist and tie the drawstring But because I had lost some weight, they would just slide down off my bum again, no matter how tightly they were tied. It became a bit of a running joke whenever I went swimming: ‘I hope the hairy white turtle doesn’t appear today.’
37
Wedding night
I didn’t want to catch that damned taxi anymore, because that was when I felt the most handicapped. It’s like being locked away in a dungeon. With the big bubble at the back, you can’t even see out the window; you have to sit there staring at the roof. Sometimes the driver doesn’t strap the chair down tightly enough, so you have a one or two-inch rocking motion, which means you’re forever fighting to keep balance, and you don’t know when the corners are coming because you can’t see anything.
Owen and Eleanor Make Things Up Page 24
