Owen and Eleanor Make Things Up

by H. M. Bouwman

  There was also a row of exercise bikes, which I thought was totally strange. What would they be for? I had a little giggle to myself, thinking, What a tease! The rest of the equipment was made up of the normal sort of machines you see in a gym. I have never been a gym guy; they’ve always bored the shit out of me. I’ve always wanted to be fit, but I’d much rather go and surf for a few hours or play three games of soccer in a row, skills before strength.

  Once we had done a lap of the gym with Bowie riding along on my powerchair, Jenny said, ‘Right, let’s get you started.’ She pointed to an old handcycle bolted to the wall. It was just a set of cranks and pedals that you turn with your hands.

  Jenny said, ‘You’re going to be doing this a lot over the next few weeks.’ I looked at the handcycle with disappointment. ‘Really?’

  Aimee lifted Bowie off my lap and I wheeled up to this thing. Jenny said, ‘Okay, let’s see how many you can do.’

  I thought, This is it. It’s happening. Rehab starts now.

  I grabbed the pedals while Jenny wrapped bands around my hands to counter my lack of grip, and I started turning, but almost straightaway I thought, This is boring as shit. I’m not doing this. It was such a mind-numbing action. I wasn’t doing it that fast – not fast enough or strong enough to achieve anything. I was just going through the motions. I’d rather try pushing a wheelchair. Wasn’t that going to be more beneficial, actually trying to push a manual wheelchair and getting stronger? After all, that’s how I was going to get around, right?

  I explained to Jenny that I had never been a gym person, but I also told her what I wanted more than anything: to get Bowie back on my lap.

  She said, ‘Yep. Righto,’ and went on to say that we would be spending a lot of the time on the padded plinth, using basic weights. While I was not as stable as I needed to be in my chair, I could still lie on the bed and do hand exercises, which would help.

  After the physio team had finished their introduction, I got to meet the OT department. At first the idea confused me – I had never heard of an occupational therapist before, so I was a bit unsure about what they did. I understood the physio team – if you want to build up your strength you need to exercise – but I had never needed any help learning new motor skills.

  The therapist I was to work with most was called Dave, and he described what we would be doing: ‘Our role is to help you develop all the new skills you’ll need for life in a wheelchair. This might be as basic as pushing a wheelchair or transfers – which we will come to later as you get stronger – but it also includes more complex areas, like dexterity and your fine motor skills.’

  This intrigued me; I assumed that I just had to get stronger. Having met the two teams on the first day while I was cruising around, I was given a timetable that included an hour and a half of physio and a two-hour block of OT every day. The first shift usually started at eleven o’clock and finished at twelve-thirty, with the second session starting after lunch.

  18

  The level

  After about an hour out and about exploring I was feeling stuffed, but it was only lunchtime. Rather than going back to bed, we went out to the waiting room to find that virtually everyone from the ward was there. All the guys who were up and about used to eat their meals with family and friends.

  As we made our way in I saw good old Maxie from a few days before, and I got to meet his family. Max, the senior man, introduced me to Serge, who was only about sixteen years old and the youngest guy on the ward. He was in the waiting room on his own, and I didn’t see a lot of his family through the time we were in rehab together. We got talking and straightaway the conversation turned to our injuries. It reminded me of when someone goes to jail in the movies: ‘So, what’re you in for?’

  Serge was a gymnast, and he had been doing cartwheels and tumbling in his local park. Something went wrong as he was doing a somersault, and he landed on his head, crushing his neck in a similar way to me.

  Once we’d all shared our stories of how we had come to be in rehab, Serge asked me, ‘What level are you?’

  ‘What? What do you mean?’ I asked.

  As time went on, I reckon I learned more from the other residents in the hospital than from the doctors, because they were more willing to give me information. Serge’s question made me look at everyone else around the room who was in a wheelchair. I could see that some people were using their hands to pick things up; some were in powerchairs while others pushed themselves around in manual wheelchairs. I was trying to assess if anyone looked similar to me, but I seemed to be in the worst condition. This was mainly because I had just come in, whereas everyone else had already done some rehab and got stronger.

  Serge told me that he was a C6-7, and Maxie nodded. ‘Yeah, I’m a C6-7 too.’

  ‘I don’t know what I am.’ I felt confused, like I should know what they were talking about, so I made a mental note to start asking more questions of the staff.

  There was a really cool vibe in the waiting room, everything considered. As well as Aimee, Bowie and Kirsty, David and Mum were there too. It was the first social activity where I wasn’t in bed, so my eyes were bright, observing everything that was going on in the room.

  Serge made me realise that I was lucky to have all my family and friends there with me. There were people who had come from the far north and south of the state, so it wasn’t as easy for their family and friends to get there. Some patients were almost on their own.

  Max was okay because he was from Newcastle, about two hours north of Sydney, but he was older, so he only had a few family members visiting. Serge had no-one. David decided that we should take him in as an associate family member, and we did just that.

  Even though I could ask questions of my family, they were totally separate to what I was actually going through. Having the opportunity to talk to people going through the same process was something special. I felt less alone. They knew. That’s where you start getting all the tricks and inside information.

  That first lunch gave me a bit of hope. I saw people flying down the hallways (it turned out they were the paraplegics, but I didn’t know that yet), and my eyes lit up. ‘Holy shit! Did you see that guy just go past in a wheelchair, on his own?’ Up to then, I had thought I’d always have an entourage around me, my independence lost.

  There were a million things going through my head. It was as if another part of my brain had been opened. I wasn’t just lying in bed being spoken to anymore. I was observing all these activities, all this movement. Suddenly I had gone from never seeing anyone in a wheelchair to seeing loads of people come and go on four wheels.

  By the end of lunch I was rooted from all the talking and thinking, so off to bed I went. This became the norm, going to bed at one o’clock or four, which seems absurd now, but it’s a good indication of just how weak I was after the injury and a month in bed.

  Soon after my family headed off, Annie the rehab nurse came back around. She’d drop in to see me every day for the next two weeks to see how I was doing and go through what I’d done that day. She seemed happy with my progress, the way I was getting out and already wanting to push a manual chair. She started drumming into me that there was hard work ahead if I wanted to get stronger; it wasn’t going to happen overnight.

  I questioned her about what ‘level’ I was.

  ‘Well,’ she explained, ‘your spine’s a bit like a Christmas tree, with branches of nerves coming off it all the way down the trunk. Those nerves carry signals to and from the brain that control movement and sensation. If you break your spine and damage your spinal cord, the level at which it’s broken affects different parts of the body depending on where the nerves come off. So the lower you break it, the more functions and sensations you will still have. Looking at your injury at the moment, you’re probably around a C6. The C stands for cervical vertebrae, which are the bones in your neck. Then you have the Ts, which are called the thoracic. They are the vertebrae that have ribs coming off them, and below th
em you have the Ls, which stands for lumbar. Below that are the sacral levels. This is where all the bladder and bowel control come from, so everyone who has a spinal cord injury has to deal with those issues, no matter what level they are.

  ‘They don’t like to put a level on you yet because you’ve only just come in and they can’t deliver a full diagnosis at this stage. There are things that may still come back.’

  This sounded familiar. ‘You mean spinal shock?’

  ‘Yes.’ She smiled. ‘But then there are some of your muscles that are still firing – they’re just not strong enough yet to be functional. That’s why you’ve got to put in the hard work, to make the most of what you have.’

  I was still getting used to where I could and couldn’t feel or move. I had no sensation or movement below my armpits, but full sensation above. My arms were paralysed from my elbow to my fingers, although I had wrist movement, which was powered with some muscles I’d retained in my forearm. I had around fifty per cent sensation all through my arms in patches and half in my hands. My thumbs and index fingers had full sensation, middle fingers fifty per cent, ring fingers twenty per cent and nothing in my little fingers.

  The doctors would continue to feed us the spinal-shock story for the next six months, no doubt crossing their fingers at the same time. But being surrounded by other people with spinal cord injuries, you gradually accept that this is it. Being told that I was around the C6 level still didn’t mean much to me, except that now I could look to someone in a similar condition, like Serge, who was further along the rehab process. Having someone to compare myself with was a massive help, because I’ve always aimed at targets throughout my life. I will look at what someone else is doing and what skills they’ve mastered and say to myself, That’s my goal too. I need to reach that level.

  Annie also explained the differences between complete and incomplete diagnoses.

  ‘We’re pretty sure you’re a “complete” injury because the damage to your cord is so severe. That means you’re unlikely to regain any motion or sensation below your level of injury,’ she told me. ‘Some people are diagnosed as “incomplete”, which means they might still have movement or sensation below where their injury is, but it might only be small signals that can still get through the damaged part of the cord. You can liken it to an electrical cord – you can crush it completely or damage it to a point where it is not working at full capacity, but some signals are still getting through.’

  I was taking all of this information in, but everything was so new that it didn’t really make sense at the time. It was like everything got filed in my brain, but the files weren’t open. Once I started making progress in my recovery, I could pull those files out and say, ‘Well, that makes sense now.’

  19

  Wheels in motion

  The morning toilet routine didn’t get any easier. If anything it became harder, and I grew more frustrated because I knew what I was in for. It was the most difficult part of the day, a real test of willpower, especially as it often came after another sleepless night. It was a matter of salvaging enough dignity to get through the rest of the day.

  Instead of the powerchair, on my request I was now hoisted into a manual wheelchair and, although still strapped in, I felt much freer but still so weak. It was an old clunker with big, nearly flat tyres, plastic wheel rims and a massive backrest. (It was only some time later that I found out what a difference fully inflated tyres made to pushing a chair around, but maybe it helped in the long run to build up my strength.) Once I was in Aimee and Mum wheeled me to the gym. Jenny welcomed us and gave more information on what to expect and the exercises that I’d be doing. It would be a slow start, and then we would get into the full rehab process. This meant I was going to be in hospital anywhere from a few weeks to a few months – whatever it took – and once I was ready they would ship me off to the specialist rehabilitation centre at Moorong to finish rehab and prepare me for home.

  After the introduction, she pushed me over to the handcycle again. Reluctantly, I took the pedals and started to work while the others walked away to discuss other matters. I soon got sick of it and decided it was time to try and push my wheelchair. If I was going to be in a wheelchair forever, wouldn’t it be best that I start straightaway?

  Right. I think I feel stable enough. I’m just going to give it a go. The brake levers on the wheelchair had these big extenders sticking up, because I didn’t have the dexterity to use them otherwise. I worked my way into a position where I could operate the levers and take the brakes off. Then I rotated a hundred and eighty degrees, which seemed to take an eternity. Pushing on the handrims felt weird, and I was only moving the chair by about a centimetre with each exhausting push. Jenny and Aimee were looking the other way, deep in conversation, expecting me to stay on the handcycle for ten or fifteen minutes. I could see them now that I’d spun around and made a beeline in their direction. It would have been pretty funny if there had been a camera on the wall recording my efforts to spin and struggle to cover ten metres. All of a sudden I was behind Aimee, and I gave her a fright: ‘How did you get here? What have you done?’

  I was pretending to be casual, ‘Oh … I just pushed myself over,’ but I had my chest puffed out, full of pride. Look what I’ve done already! I’ve pushed a wheelchair ten metres.

  They were laughing as I said, ‘That thing there is boring. I’d rather do other stuff.’

  Jenny did seem impressed. ‘Well, okay. You’ve managed to get here. You didn’t fall out of the chair and the chair didn’t tip over.’

  It was clear that I was still very weak. I had already been assessed to exercise what still worked, and the physios knew which muscles to target and the capabilities I could potentially achieve. I was lucky enough to still have my triceps, and I learned early on that these muscles were going to be super important to my independence. I would rely on them for transfers – getting in and out of my wheelchair and onto a bed, sofa or shower chair – so we focussed on building them up as much as possible. When I was assessed, they were only considered at stage one, which meant they weren’t functional, but I could at least flex them.

  The physio wanted to build up my endurance and fitness as well, because I’d lost fifty per cent of my lung capacity. I didn’t have the strength or stamina to perform any activity for a long period of time. This was partly because my lungs had collapsed in Singapore, but also because my level of spinal cord injury meant that the muscles around my lungs and diaphragm weren’t strong enough to provide support. The situation was made worse by my not having done any physical activity for a month. We could increase my lung capacity again by doing lots of stamina exercises to build up these muscles. So endurance was the main focus for the physio, which was familiar because I had focussed on endurance my whole life. When I was surfing, it was all about how long I could paddle for, how long I could stay in the water, always testing myself.

  But I wasn’t in the water, I was in the gym. I knew it was for my benefit and that it would enable me to push around in a wheelchair, but it wasn’t the fun activity I was used to when training for surfing or soccer. Even then, when the coach sent us on a run around the pitch to build our fitness, I would always complain. ‘What are we doing this for? I would rather run around with a ball and improve my ball skills at the same time.’

  Despite my protests, they put me on the handcycle and I grudgingly got on with the exercises.

  We eventually came to an agreement whereby I could push around the gym to build my stamina, which meant I was gaining practical skills at the same time. It was probably going to take me longer to reach the level of strength and stamina I needed, but now I had my head in it, which meant I tried harder. Even though wheeling around the gym should have been an easy push, at the start it drained my arms quite quickly.

  We ended the physio sessions with a lot of stretches to keep the full range of movement in all my joints that didn’t move anymore: ankles, knees, hips, groin. It helped to finish a session
with a good wind-down. I’ve always been pretty flexible, so they didn’t have much trouble manipulating my joints.

  After lunch I was off to OT, curious as to what I could expect. My OT coordinator, Dave, and I ended up developing a really good relation ship; he was one of my most valuable assets in the hospital.

  In that first session we talked about what we would be doing and established my goals. Obviously, I wanted to be as independent as possible, run my business and do as much as I could for my family.

  Dave was a senior OT with lots of experience, but what I liked about him most was that he was a pretty unemotional guy, much like myself, and he managed my expectations. Right from the start, I was prodding him for information, asking if I would be able to achieve this or that. I had no idea what I could reasonably expect to be able to do. He wouldn’t have let me get away with my behaviour in the physio room. He would have said, ‘No, mate. You’re going to pedal that handcycle. You need to do this and you’re going to do this.’

  So in a way I was glad he wasn’t my physio. Earlier on, I tried to push him in a few areas to test his resolve, but he didn’t buckle, which was really good. That’s what I needed. Right from the start, he got in there and told me what I needed to do.

  ‘If you want to be independent, you need to know how to get the best out of the wheelchair, so we’ll teach you about how it all works. Wheelchair skills are going to be a big part of your rehab once you get strong enough. As you get stronger, we will teach you how to transfer to and from your wheelchair. Another important skill is writing. You’ve lost all dexterity in your hands, but there are ways we can get you writing, both with a pen and a keyboard. Learning to eat on your own by handling utensils is something we can start on straightaway as well.