Owen and Eleanor Make Things Up

by H. M. Bouwman

  There was nothing wrong with me, other than being paralysed. I was progressing slowly, but I was told over and over again that when I got to Moorong everything would accelerate. I would be doing a lot more physio and OT, getting a lot more education – a lot more of everything.

  The frustration started weighing heavier on my mind. I was still going out on the weekends, but the daily grind was getting to me. I was tired of having to start every morning with the bathroom routine, the worst part of the day, and then continuing with the same repetitive exercises I’d been doing every day for six weeks. The OT and physios knew I was ready to be discharged to ‘magical Moorong’. The doctors and nurses knew I was ready. Everyone knew I was ready. And a month later I still couldn’t get in. There was no bed available.

  The frustration made the negative thoughts harder to push back; I felt like I wasn’t getting anywhere. Everything seemed to reinforce the fact that I couldn’t move. Everywhere I looked, people were walking around. David or Dad would be playing with Bowie, picking her up and spinning her around – all the things I wanted to do, all the things I knew I wouldn’t be able to do stayed firmly at the front of my mind.

  These feelings got worse when I noticed that a few people started jumping me on the table, or names would disappear completely from underneath mine on the board. There were people going to Moorong because they’d tested positive for MRSA, a strain of staph resistant to antibiotics, and there was an MRSA room open. I couldn’t get my head around that. Well, fuck, I’m healthy, yet you’re rewarding people who are sick before me? At the time I didn’t really know what MRSA was, and I didn’t understand why they couldn’t just make the room non-MRSA and prepare the bed for me.

  One of the nurses explained that MRSA was a bit like a virus. Lots of people carry the bug around on their skin without having any problems, but if it gets into an open wound, it can be very dangerous. Those who are diagnosed with it need to be kept separate from those who aren’t.

  The physios and OTs at North Shore also had to spread their time with the other patients, so I was beginning to feel like I couldn’t get enough time with them, whereas at Moorong I would be assigned my own physio and OT. There were new people coming in every week, and when I saw them it reminded me how far I’d come. But I still felt like I was just spinning wheels, and the wheels I did have werea on a crap wheelchair that was now stopping me from learning some important skills.

  I was getting the same amount of rehab as when I started, but since I was out of bed for longer periods I had more downtime, and I felt like that was time wasted. I was told that I would be fitted for a better wheelchair at Moorong as well, so they were dangling all these cherries in front of me, saying, ‘You’re ready, you’re ready … but you can’t go yet.’

  That frustrated me even more; I was in limbo.

  We had a family friend who had an apartment in Pyrmont, on the other side of the Harbour Bridge, so Aimee had moved there. It was a much bigger and better place than the one in Chatswood. There was also a lot more to do outside. On the weekends we could go down to Darling Harbour and have a look around or get some food. Family and friends were also staying with Aimee, so there was still that constant rotation of people to help her take care of Bowie and keep me company. But I had three or four weeks of this kind of stagnation. Instead of pushing myself a bit harder in rehab, I kept thinking, What am I doing all this for? I knew as soon as I woke up in the morning that I wasn’t going anywhere. Then I had to do all these exercises? What’s the point? My transfers were progressing, but I was bored. The staff reinforced the fact that the constant exercises weren’t going to change at Moorong – I would be doing more repetition – but Moorong was the next stepping stone to home. I’d be fine.

  That’s when I started speaking with the physio about mixing in different exercises, like boxing, to change my routine up a bit, which helped me a lot, both mentally and physically.

  There were people behind me on the table who were waiting as well. I guess they had their own frustrations at the time, too. Eventually the manager from Moorong came out to see me on a Friday to explain the admission process; she told me that a bed wasn’t far off: ‘By this time next week, you should be at Moorong.’

  I didn’t tell anyone about the conversation. After my experience in Singapore, I didn’t want to get my hopes up. I wouldn’t believe it until I got the official word.

  Sparkes and Conti, along with some other friends, came up that weekend to update us on the benefit night and let us know how it had all gone. We were in the apartment when everyone showed up with the final dollar amount written on a cake.

  It was good to have us all together, even though I didn’t feel comfortable accepting the money that was raised. But I loved listening to the party stories, and it was great knowing how many people had attended the benefit.

  The money raised was eventually spent on converting our house so that it was wheelchair accessible and we could go back home. We were so green. We didn’t know what needed to be done. We didn’t know if we could even keep the house.

  The next week started slowly. I kept doing the same mundane exercises over and over, but then Thursday morning came around and the Moorong manager walked back in.

  ‘Ah, look … sorry. We still haven’t got the bed yet.’

  Oh, you are fucking joking.

  She assured me that the move would happen the following week, and I blew a gasket.

  I felt really bad about it later, but I was lying in the hospital bed on my own when she came to see me. I was cynical about the chance of ever going to Moorong, so when she came to say there was another delay I had to get my frustrations out.

  ‘I’m the healthiest one here! The staff say I’ve been here longer than any healthy patient they can remember!’

  She apologised and said it was all going to happen next week. I instantly felt bad. It had just been luck of the draw where I was placed in line on the day I arrived. Patients the same level as me would always take up time because we needed the longest rehab. But I had an inkling that my time really was coming. I could manage another weekend.

  By ‘next week’ I thought she meant the following Friday, but she came in on Monday and said, ‘Right. We’re going tomorrow morning.’

  What?!

  We had to get my things packed to take to Moorong because patient transport would only handle my transfer. Aimee was down in Kiama at the time, checking in on the shop, so there was no-one around. I had to enlist the nurses to help me pack so my bags could be picked up later. I had my laptop with me, as well as some office files, and there were photo frames up everywhere. After waiting for ages to go to Moorong I almost wasn’t ready, and I’m someone who always has everything planned out. I’m always early for meetings!

  I was starting to feel anxious – I couldn’t even carry a bag. I’d got used to needing someone by my side all the way. When the morning came, I reminded myself that there were some patients at Moorong who I’d spent some time with at North Shore. Max and Serge would be there, along with other familiar faces.

  After getting through my morning routine, I said goodbye to the staff, even though the doctor had said, ‘We’ll see you again – you’ll need to come back for some tests. Moorong is a rehab centre, not a hospital.’

  I had formed some really good relationships with the nurses, physios and OTs, and it felt strange to be going away so suddenly after waiting for so long. Patient transport picked me up in a bus and locked my wheelchair down in the back. I sat there on my own, wondering what my next destination was going to be like.

  35

  Moorong

  It was mid-September when I finally got to Moorong, and the first thing I saw when I arrived was the Lizard Lounge. That’s what the front steps of the facility was known as, because it’s a sun trap and all the quads sit there sunbaking. It was late in the afternoon, and these guys were enjoying the last of the rays.

  The next thing I saw was the ramp up to the door, and I immediately
thought, Oh, I’ve got to get up that, so I can be independent. Although there were some quads in powerchairs in the Lizard Lounge, I decided that if I wanted to join the inner circle I had to master that ramp. That was the first goal I set myself at Moorong.

  Once the staff had checked me in, they took me down a long corridor to a back room, and I was on my own again. My new roommates were all busy with rehab sessions. It was another four-bed room like the one I’d been used to in the hospital, except now I was being thrown in with a bunch of blokes I didn’t know. I didn’t have many possessions to move in with me yet, so I sat there answering questions from the registrar. After he left, I felt deeply alone and didn’t want to go out of the room and explore.

  It was daunting being in this new place. I didn’t feel like I had my own space. At North Shore, I had my routines. Even if I was on my own, I knew I could go down in the lift and wheel myself out to the courtyard and sit there alone. If I wanted company, I could push myself to the waiting room and catch up with people, or I could go to the physio gym and hang out there, even if I didn’t have a session. But I had entered this new world and, although I’d been looking forward to it for so long, I almost froze.

  Moorong was an old 1920s building, and I couldn’t get over how cold the place was, especially in my room. Royal North Shore was built in the 1970s, and I was used to the windows being taped shut. Everything was sealed. But at Moorong the windows were open, and there was always a sharp wind whistling through.

  My first thought was, Fuck, how am I going to survive now?

  Mum showed up before long with some extra blankets she had grabbed from North Shore. I felt better when she arrived. She had brought over a couple of my other personal things – I couldn’t get comfortable until I had my little space set up – but she also brought something else with her that would have a massive impact on my life, more than I could have ever realised at the time.

  I had been having so much trouble speaking to friends, family and guys in the shop on my tiny phone. I was forever fumbling around with it. We had glued a picture hook on the back so I could slide my fingers around it, but that was still frustrating because I couldn’t press the buttons with my clumsy, flaccid fingers.

  That first day at Moorong, Mum pulled out a box, put it on the bed and said, ‘Look what I got!’ It was an iPhone. It was so different to any other phone that I’d seen before.

  Being interested in devices and technology, I began playing around with it immediately, and realised how much easier it was for me – it was all touchscreen, so I could use my fingers. Mum was trying to show me, but I could see the potential for myself straightaway.

  Now that I had my space and personal belongings sorted, I decided it was time to look around and meet a few people – staff, patients, anyone. Mum stayed in the room, playing with the phone, but I felt more secure knowing someone was there. All the nurses were cheerful, but something I learned from one of them came as a shock.

  At North Shore I was used to getting out of bed at around 10.00 or 10.30, whenever my number came up to be hoisted out. But this nurse said, ‘Right, I’ll be around at seven.’

  What?!

  I had been warned that Moorong meant earlier starts – I just didn’t realise how early.

  Being an early riser prior to the accident, I knew I’d easily get used to it. Still, it was a shock to face a three-hour change in my morning routine.

  ‘You’ll have breakfast at a quarter past six.’

  ‘Holy shit …’

  ‘Then we’ll get you on the toilet.’ She smiled. ‘Rehab starts now, love! Here we go!’

  ‘Holy shit …’

  ‘You’ll meet your physios and OTs tomorrow, but we’ll get you up in the morning to help bathe you and get you ready for the day.’

  ‘Holy shit …’

  By the time I was in bed it was about 8.00 pm, later than I was used to. That’s when I discovered there were no TVs in Moorong. What was I going to do at night? Having the TV on helped me to drift off to sleep.

  I asked one of the nurses, and she explained that there wasn’t a ban. ‘Oh, you can bring in a telly, no worries. We just don’t supply them. Everyone has their own telly.’

  All I could think was, Not only will I spend the rest of the night thinking about getting up at six, but I can’t even watch telly. I’ve got nothing to take my mind off things.

  At that time I could slowly transfer myself to bed with a slide board, but somebody needed to be with me to give a little help. And I needed craning in sometimes, depending on how tired I was. I said hello to the other guys in the room. There were a couple of higher quads in there, and one para guy.

  I ended up being awake most of the night, knowing I had to get up early. Occasionally I’d doze off, only to wake up a few minutes later, freezing. The wind was ripping through the whole building. I had about five blankets on my bed, but I was still cold. I’d waited all this time to get to Moorong, to charge ahead, and now that I was there it felt like a goddamn prison.

  Somehow I must have got to sleep, because the next thing I knew I was woken by someone whipping the curtains from around me and pushing breakfast across to me on a bedside table.

  It was dark, so I turned on the light. In front of me was a cold piece of toast, a bit of cereal, an orange juice and a barely warm cup of tea.

  Holy hell, this is getting even worse!

  After breakfast they gave me half an hour’s grace, so I just lay there, dazed, surrounded by other people eating and getting themselves up. The wind was still blowing through the room. Then the staff came in with the sling at around 7.00. ‘All right. Your number’s up. We’re going.’

  All the rooms at North Shore had an en suite, so they could close off the whole room and have the four of us share one bathroom. But at Moorong, we had to go outside our room for the toilet and shower. So there I was at dawn, being put into a shower chair stark-naked apart from one little towel on my lap, and then pushed twenty-five metres along a corridor in the freezing wind. There were about ten bathroom cubicles, which were nice. Kind of.

  I’d been used to a guy helping me do ‘the devil’s work’, but now I had a female nurse in with me. Her name was Lisa. She was middle-aged, with long blonde hair, glasses and a bubbly personality.

  At first I thought she was wheeling me to the bathroom, but then the glove went on. I thought, Oh my God, you’re really going to do this, aren’t you? I think she sensed it.

  I was exposed with a woman next to me, and I tensed up and sort of freaked out. But Lisa just joked about the situation we’d found ourselves in and talked me down, making me feel better. ‘We do this every single day,’ she said. She was used to it.

  So we went through with it, and I had a shower. I was freezing cold again, but they wrapped warm towels taken straight from the dryer around us when we came out of the bathroom and took us down the corridor back to bed to get changed.

  Once I was dressed, I headed out to meet the staff. The physio who was overseeing my rehab was called Marcia, and she was the manager of the team of half a dozen physios, all female. I liked Marcia straightaway, because she was very strict. She laid down the law right from the start. She would have a joke with me, but she took her job very seriously, and she ended up pushing me over the following months.

  I also met another senior physio called Anne, who would be working with me on a one-to-one basis. She explained the exercises we would be working on, which were similar to the things I had been doing at North Shore, but Anne drove me to do more right from day one. She could see early on what I was capable of.

  She also picked up on my lazy nature and could see when I was only giving ninety per cent. She would have a go and challenge me, which I really respected, even though I hated it at the time. She was great at reverse psychology. I was given a timetable of all my regular sessions with the physios and OT.

  One thing different from North Shore was that the physios now looked after the wheelchair side of things, and their first
goal was to set me up in a decent manual chair fitted to my size. I would also be focussing on building the muscles that still worked to create the strength I needed to push myself. Even though I was beginning to see that there was more to a wheelchair than I’d first thought, I was still thinking of them like cars.

  Marcia explained that I would have to go through a few test chairs to work out what I felt comfortable in, so that I didn’t develop any pressure areas, and to see if I needed to be more ‘reclined’ or more ‘active’. She explained to me that the difference came down to balance, because you’ve got to remain upright. The more active your posture, the easier it is to get around and do more things, but it’s harder to keep your balance. If you’re more reclined you’re more balanced, but it’s much harder to push, so you’ve got to find that sweet spot. That’s just an ongoing process of learning more about wheelchair functionality.

  Marcia would put me in a chair for a day. I would wheel around in it and see how I felt, how easy it was to push. Then she would get me out of the wheelchair and check my bum, back and my hips for any red marks that could turn into pressure areas and eventually pressure sores. The seating was a massive part of the selection process.

  Then the decision came down to me – which one did I feel most comfortable in? That was how I could begin to analyse what was best for me. As I got stronger and my balance improved, I could get into a more active posture, so they were tinkering with wheelchairs the whole time. A guy called Eric came in to do the wheelchair maintenance. Eric was a T12 para who had his own wheelchair business, and he was always in the gym tweaking chairs. He must have been sixty years old, and he was the most active person I had seen in a wheelchair so far. Eric would be bent over in his chair with his chest on his lap, working away right underneath my seat. Even though I knew he was a lower level than me, it was good to see someone so agile.