Owen and Eleanor Make Things Up

by H. M. Bouwman

  We had our Mazda SUV lowered by two or three inches so that the transfer was more level for me, and Aimee would do most of the work. She’d wedge the slide board under my thigh, and then she’d push my hip while I tried to lift and hop across. The more we did it, the better we got.

  On the first weekend at Moorong we discovered just how quiet it got there, but we had friends coming up and the family around, so I spent the time practising getting in and out of the car. Aimee, or whoever else was sitting in for her, was learning as I was learning.

  For our first family outing, Aimee and I went out to the car park and I got in, nice and slow. Luckily, Bowie was really cruisy, never impatient, so she was happy to sit in the back while I inched my way across the slide board until I was in. I hated that Aimee had to pack everything up and get the wheelchair in the car, but I loved the absolute freedom of going out together – just the three of us. I was just another guy sitting in the passenger side, looking like anyone else on the road, except that I was still learning how to balance in a car seat. When Aimee hit the brakes, I’d go flying forward and crack my head on the dash. If somebody had seen that, they would have thought, What the hell is that guy doing?

  When we reached the Pyrmont apartment, which felt like home for Aimee and Bowie, I wanted to transfer onto the lounge so I could sit and cuddle in with Bowie and watch TV.

  I was full of confidence, having negotiated getting in the car, but we realised the slide board wasn’t there, so Aimee ran down to the car park to get it. I was sitting there, all ready to go. Bowie was asleep, and I thought, There’s not much difference in height between the chair and the lounge … That’s when my impatience kicked in, and I thought, I’m just going to go for this!

  I had watched other people in the gym performing transfers without a slide board, usually paras, and the staff had said that it was achievable for some people of my level. I’ve always wanted to get rid of as many tools as possible, and this now included the slide board.

  It was a leather lounge. I hesitated for a moment. If I do this, Aimee’s going to have a go at me. But then I thought, Just do it! So I sat on the edge of my chair, stuck in two minds, almost like I was getting ready to do a bungee jump off a cliff.

  I stared to giggle. Well, it’s now or never. Aimee’s going to be back in a minute.

  I called out, ‘Geronimo!’ and I basically collapsed forward face first. It wasn’t even a controlled fall. I didn’t have the strength in my arms to do more than a little lift before I fell onto the edge of the lounge and rolled. I just about managed not to fall off, and it was at that point Aimee walked through the door …

  There I was, spread-eagled on the lounge, my feet still on the wheelchair, my face in the lounge and my bum in the air. ‘Well … I did it!’ I said, teetering on the edge.

  It was another way of exploring my limits, and it had almost been successful, but it definitely wasn’t functional because Aimee had to sit me up. I knew I wasn’t ready yet, but it felt good to have a go. And I felt like I’d succeeded just by trying. The first time is always the hardest, the most daunting hurdle. Even though I knew I couldn’t get off the lounge again on my own, I loved sitting there cuddling Bowie, watching a movie, enjoying that small taste of freedom. It felt normal.

  After a couple of months of regular days out, it was time to try something more ambitious. Two of our closest friends at the time, Critta and Jilly, were getting married down in Gerringong, just south of Kiama. I was a groomsman, and the last thing I wanted to do was let Critta down, but it was fifty-fifty as to whether I was ready.

  It was a massively challenging prospect. It was November and the builders were still working on our house, so we booked ourselves into a local hotel in Kiama. Everything was new to us. We had been going to the apartment in Pyrmont regularly, but it was all set up for me there, and we were only driving for up to forty-five minutes at a time. The OTs weren’t worried, but they suggested we stop halfway to recline the car seat and change my position in order to prevent skin issues.

  Then I had to think about going to this big social event with lots of people. This would be different from the lunch in Freshwater – all our friends would be there, and plenty of them hadn’t seen me face to face since the accident.

  I had already discovered that it was a shock for some people to see me in a wheelchair for the first time, but I pushed aside those feelings of uncertainty to be there for Critta and Jill.

  As we drove into Kiama for the first time in seven months, it was great to see my home town again and the beautiful beaches I used to surf. Because I knew it was a flying visit, I probably put up a few walls – I knew I wasn’t coming home for good. We went straight to the wedding venue, and the plan was to go back to the hotel afterwards, spend the night and drive home after brunch with our friends. Bowie was staying with Aimee’s mum. I wasn’t worried about being in a wheelchair, but I was worried about being away from the support of the staff and Aimee having to deal with whatever came up alone.

  The wedding was another study in human behaviour and how different people reacted to my condition. Some people I’ve known for ages took backward steps, while others I didn’t know too well came straight up to me for cuddles and conversation. Everyone was mingling, and the whole area was wheelchair accessible, but I had a line of people who wanted to speak to me, so I didn’t move too much.

  I gave my groomsman’s speech and everyone had a giggle. I don’t know whether I put on a front to push away all the things I was concerned about, but I wasn’t upset or self-conscious about being in a wheelchair.

  We left a bit early because as I was exhausted from talking constantly over the noise and we had to get back to Kiama and check in to the hotel. It wasn’t just a question of going home and falling into bed anymore.

  The whole night went smoothly, and it was the first time that Aimee and I had slept in a bed together since the accident, which felt good. It was nice to be out of the hospital, but daunting. Aimee was even more worried about the experience than I was.

  The next morning Aimee helped me get out of bed and get dressed, but I wasn’t feeling right, probably from exhaustion – I told Aimee I felt a bit funny in the head.

  We went down to our friends’ room and were talking for a while when I began to feel light-headed and dizzy. All of a sudden I fainted and fell forward onto the table.

  I didn’t know what was going on, but Aimee saw me collapse, and everyone panicked. I wasn’t passed out for long, after they sat me up and tilted me back. Aimee got me some water, and I felt a bit better in that recline position. Then we realised that, because the previous night’s wedding had been a cocktail function, I hadn’t had anything to eat.

  This was when I realised that I don’t feel hunger anymore. I knew I wasn’t eating much at the hospital, but I thought it was because I didn’t like the food. Usually at weddings, a mate and I would work out where the waitresses were coming from and stand close by so we could get first pickings. On this occasion, I had completely run out of fuel. Aimee ran down to the restaurant and got a toasted sandwich. I ate that and instantly felt better. I knew I needed to start looking at my diet and when I ate, considering I no longer had the feeling of hunger to guide me.

  38

  Time to go

  Now that I had been a regular passenger, it was time to get back in the driver’s seat. My goal was to get a licence before I left for home. I had to complete a written test, and then the driving OT assessed me to see what I could and couldn’t do, which would affect the kind of hand controls I needed.

  The first driving lessons came around, and I’d obviously had no experience controlling a vehicle with modifications. Luckily the instructor was pretty relaxed. We sat in the car park and he explained how it all worked. I had a fork-shaped handle on the steering wheel that I could wedge my left hand into, and then I had a push control lever for my right hand – down to accelerate and forwards to brake. Then there were blinker buttons in the headrest, which I operated w
ith each side of my head.

  Once the instructor was comfortable, off we went. Moorong was on a massive plot of land with a private road about a kilometre long. We went up and down the road really slowly while I got used to the controls, then we drove around the quiet part of the neighbourhood for about twenty minutes.

  For our second outing, we headed beyond the suburbs and went on a big loop around the city, which took us along some of the city’s busiest roads and over the Harbour Bridge. I was nervous driving in so much traffic, but it went okay, and when we got back the instructor said, ‘I like to throw people in the deep end to see how they deal with it!’

  From then on I had driving sessions twice a week. I needed to get my skills nailed down so I could take the test. I was in a rush to get my licence, because I was focussed on going home before Christmas. The instructor was confident I’d pass, so we went to the RMS to take the test.

  The examiner was based near Moorong, and he was used to assessing people with SCI. He explained that most of those who came through had plenty of driving experience. They just had to master the controls, and he could tell straightaway if people could drive or not. So, I got my licence and felt a big sense of achievement.

  Then I got the news that I wouldn’t be home before Christmas.

  It wasn’t Moorong’s decision – they thought I was ready. I was told not to expect too much when we got home, that life wasn’t going to be the same as it had been before I was paralysed – they were always drilling that fact into me. We sat down with the team, and they ticked off the requirements for me to be discharged. I met them all except one: the house wasn’t ready.

  It was so frustrating to be told that I had been one of the best patients in terms of my attitude but couldn’t go home. I said, ‘Yeah, well, I’ve done everything you needed me to do, and now you’re not going to fucken let me go.’ It was a full-on rebellion.

  I was devastated. Nobody wants to spend Christmas in hospital, especially when you have a young child. I had been gunning to finish, but there came a point where it was obvious that it just wasn’t going to happen. Aimee was also adamant that the place had to be finished before I went home, and I could see she was really anxious about what our future was going to be like.

  As with other times when I felt crushed by a soul-destroying setback, I went into my shell. I would think, This isn’t fair to Aimee. She’s got to get out now, because this is going to be my life. I told her she should leave me. I went into that zone for a day or so.

  All those sorts of thoughts had bubbled up sporadically through the whole rehab process at Moorong, especially if I had shat myself and needed cleaning up, or in any other event where I needed help. An incident like that felt as though I’d taken ten steps backwards. As I got further ahead and closer to home, any setback would make me think this whole situation wasn’t fair on Aimee – this wasn’t fair for anyone. This was something I had to deal with, and I would rather do it on my own, even though I would struggle. I would push everyone away. I wrote Aimee a couple of emails, saying, ‘It’s okay to leave. You must be feeling like crap. You don’t deserve this. It isn’t what you signed up for.’

  Whenever I felt like things were getting better and the world was starting to open up, something bad would happen and knock me right back to square one. It was a realisation that I wasn’t any further ahead, and this was going to be with me forever. Those were the slap-in-the-face moments when the voice in my head would say, ‘Wake up to yourself! You’re fucking paralysed!’

  It’s a balancing act – you’re teetering constantly – and when something knocks you off there’s a long way to fall.

  I told Mum how shitty it was. I probably took it out on her the most. She was the one who always wanted to help, and I would snap back at her, ‘Life’s fucked.’ Whereas with Aimee, I would just push her away.

  That’s the burden of SCI. You have these little boxes packaged up in the back of your head, and then something happens and they all spring open and fill your mind with negative thoughts. Somehow you have to find the energy to pack them all back up again, but they are always there, ready to spring open again.

  While I couldn’t get over the fact that I was going to be in hospital for Christmas, I tried to make up for it by spending nearly every day outside of Moorong, going to Pyrmont and catching up with friends. I even took a trip to Mum’s on the Central Coast. She invited every one from the extended family, and I had an unreal time.

  We tried a couple of overnight stays at Pyrmont. The bathroom wasn’t ideal, but we worked out a way for me to at least have a shower. I had someone from a local agency come along and help me in the bathroom, and that was my first experience of a stranger from outside the hospital assisting me with the crappy business. It feels terrible. It’s strange thinking back on those times I stayed out overnight: I can’t remember any of it. It’s like my mind’s packed it up in another box and put it away.

  By the time Christmas came around, Brendan, Serge and Max had already left. I felt happy for them, because I knew how much I wanted to go home and they must have felt the same way. But it also made me feel even more frustrated.

  On Christmas Eve, there was a big lunch at Moorong, and Bowie handed out presents to the whole staff. It ended up being a pretty cool day, but then I had to get over the fact that I wasn’t going to be with my daughter when she woke up on Christmas morning.

  The following day, Aimee picked me up early, and we went back to Pyrmont to spend time with family – opening presents, having lunch and doing all the normal things that families do.

  As we entered January, Aimee was still insisting that everything at home had to be finished, but I said, ‘Look. I’ve been here long enough. It’s time to go.’

  The main hold-up was the lift, but I wouldn’t need to go downstairs, because the bedroom, bathroom and kitchen are all upstairs. Aimee took some convincing, though. I think her hesitation was partly because she wanted everything to be perfect for my arrival, and partly because she was worried about what life was going to be like at home without the red emergency button next to the bed in case anything went wrong, though I’d never really used it. She probably should have been a nurse with her caring nature, but then maybe she cares too much. She was focussed on all that could go wrong, more than the good that could come from me going home.

  Eventually I won the argument. There was nothing left for me at Moorong. I was ready to leave, and the longer I stayed the worse I felt. It was time. I didn’t feel any doubt. I even made a little mix of all our favourite songs to play on the drive to Kiama.

  I said goodbye to everyone at Moorong, knowing that I would be back for a check-up at some stage. Bowie was already down in Kiama when Aimee came to pick me up that morning. I could sense her anxiety. She definitely wasn’t as happy as I was. I put on the mix and we headed off. It felt surreal; I couldn’t quite believe I was finally going home after the hardest and longest nine months of my life.

  I was excited all the way to Kiama. Some of the guys had made a massive banner that they hung over one of the bridges, saying ‘Welcome Home Longbottoms.’ But we nearly missed it because I was so focussed on getting around the corner and seeing the surf and the beach. The house hadn’t changed that much. It still felt like the place I had left nine months before, just adapted to what my life was now.

  The entire family turned up, along with a bunch of friends, and we hung out for the rest of the day, like old times. After everyone had gone, I got myself into bed and propped up. Bowie jumped in next to me. Aimee was still buzzing around, tidying up as she would normally do. I lay there, in my own bed, with my little girl cuddled up next to me.

  I was finally home.

  Epilogue

  My main motivation for writing this book was to have everything I went through down on paper, in order that Bowie could hopefully pick it up one day and understand how I ended up in a wheelchair and why her childhood may have felt a little different compared to her friends’.

 
; It was also a way of discovering exactly what occurred on that day when everything went wrong. I don’t look back on it too much, and I’ve never really spoken to the guys who were on the boat about what happened. I have always focussed on moving forward. I’ve also found out a lot of things that I was unaware of, which has helped me join the dots and finally have a fuller picture of that chapter of my life.

  Since my accident, the biggest obstacle I’ve had to overcome has been not being able to do the things we all dream of doing once we have kids. The general playtime in the first few years really upset me. I’d sit on the sidelines, feeling redundant as a father while I watched others teach Bowie certain skills – skills that most children learn from their parents, and in the process strengthen what is already a strong bond.

  I had always dreamed of sharing my passion for surfing with my child, just as I had experienced with my father, spending days on the beach as a family, watching them learn and hopefully discover the same love that is such a big part of my life.

  I’ve tried my best without pushing it too hard, but Bowie hasn’t shown much interest in surfing other than a couple of fleeting moments, when my imagination sparks on what could be, before she takes her usual stance of no interest.

  We were at a grommet contest when she was around five, with Dylan and his kids. We were at a spot where little swells roll into a lake, and the young kids can stay on the swell for quite a while. My brother dragged Bowie down to the water with a mini mal (a short surfboard). I couldn’t get down to the water’s edge as it was quite rocky, so I stayed up on the hill, watching intently.