David came in and said, ‘We got speaking to this Max guy; he’s a fantastic bloke and we really think you should meet him. Do you want to talk to him?’
‘Ah yeah, whatever.’
Max came wheeling in, and I got a shock at first because they hadn’t told me how old he was. He came up to the bed in his wheelchair and said, ‘How you going? I’m Max.’ He reached over, and I reached over, and because I couldn’t move my fingers and he couldn’t move his fingers we did this weird sort of handshake where we couldn’t grip each other’s hand, like two wet fish getting slapped together. It was my first experience of a handshake since the accident, and I said apologetically, ‘Holy shit. Sorry, I can’t even squeeze to shake.’ He just laughed.
So I told Max my story in brief and he said, ‘Bloody hell! All I did was trip up a stair!’
I was shocked. I knew there would be people worse off or a bit better off than me, but I assumed all the accidents would be as dramatic. We spoke for a bit and he was making me have a good laugh, but he didn’t stay long. He just wanted to say that he was going to be there, if I ever wanted to talk …
So Max went wheeling out, the first person I’d met in a wheelchair. He looked normal; it was a shock to think that I would be a normal person in a wheelchair too. He made me feel welcome, a part of the club. That was the vibe I got from Max. I think he may have been a bit guarded about what he said around Aimee and the family, but he was exactly the way David had described him to me: ‘He’s in good spirits, and it would probably be a good idea for you to meet him and see that he has a positive attitude.’
When you are confronted with a situation like the one I found myself in, there are two ways you can attack it: you can either sit in the corner and cry about it, or you can accept it and get on with your life. Until you are there, you’re not quite sure how you will react. David’s a really clever guy, someone I fully respect. He understands me, so he could see that meeting Max would be really beneficial.
As the weekend went on, my family continued to meet with the other families in the ward. They all became quite a tight group, because everyone was going through the same ordeal, asking the same questions, wanting the same information. Meanwhile, I was stuck in my room while they were all having these great conversations and telling me about them. I thought, What about me? All I had was the telly. I didn’t want to tell my family and friends what I had to go through in the morning. I had told Aimee, and later David, because he was my sounding-board, but there was no way I was going to tell anyone else. It was just too humiliating.
That first weekend crawled by. Monday came around, but it was still a public holiday. I was getting really frustrated. Here I was in Australia, ready to go, and there was no-one around. As a business owner, I sometimes get frustrated by the number of public holidays we have, and it felt even worse in hospital, so I was cursing the government. ‘There are people in here dying or maimed or whatever, and this place is a ghost town!’
The nurses could see I was getting agitated. They kept saying, ‘It’ll all happen tomorrow, don’t worry. You’ll be wishing for these weekends again once you start your rehab.’
In truth, it was probably good to have the opportunity to settle into my surroundings while things were quiet, but I was over having all these people telling me about the amazing treatment that was going to happen in the future. I’d already been on my back for four weeks, so I was more than ready to do something different.
Still, at least I was comfortable, I wasn’t in pain, and I had Aimee and Bowie around as well as the rest of my family and a few friends. I wasn’t eating that much, because whenever the hospital food arrived it was terrible, except for the cut sandwiches. Luckily, Kirsty’s a bit of a gourmet chef – the kind of person who can turn anything into something delicious – so she started making meals and bringing them in. Even so, by that point I had completely lost my appetite. Swallowing was still painful, and they were almost forcing me to eat.
Sparkes had returned home, but he came back up to see me in hospital. Aimee and David worked out a whole roster. Obviously, it was great having Bowie around, but she couldn’t be there 24/7 and Aimee wanted to stay with me, so between Kirsty, David, Dad, Mum and various friends, there was always someone at the apartment in Chatswood to look after Bowie or be with Aimee. The timetable also ensured that someone could be with me every day, which was great.
Now that I was back in Australia, I got to speak to the guys at my shop and see how things were running, although I was already connected through email and spreadsheets on the computer. It was good to know that everything was running well. I also got to speak to Macca and Kent, the guys who had been running the show for a while, and they informed me of what was going on. I still wanted to be right there with the business, making decisions, but they shielded me by taking on the more difficult stuff themselves where they could, which, looking back, was the right thing to do. Aimee planned through the week to go to the shop for a quick visit, having not been there for the previous month, and confirmed that everything was running smoothly. This meant that I could focus all my energies on getting better, being with Bowie and making sure everyone else was okay and coping with my situation.
As we reached the end of the weekend, one of the physiotherapists called Jenny came in to tell me that they had a powerchair set up for me and that I would be getting up and about tomorrow, so I was on: the journey from hospital bed to home had started.
I now knew what was coming, so that night I started really thinking for the first time about being in a wheelchair. I didn’t know what to expect or think. I thought about the things I couldn’t do while curious about the things I might be able to do. I’ve always been a sportsman, throwing myself around on the field or in the water. Shit. What will I not be able to do anymore?
I hardly slept that whole night. Instead, I spent the time thinking about the possibilities and the impossibilities of being in a wheelchair.
17
The new regime
The long weekend passed, and I finally got to Tuesday. I had almost become used to the toilet process, thinking, Well, it’s not that bad other than the humiliation. But because I hadn’t been eating, I hadn’t really passed anything … until Tuesday morning. The first time my bowels moved, I realised the process was ten times worse! Not only did I have to deal with somebody there, but there was the smell of it, which had always bugged me … and the noises. When there was nothing happen ing I could just close my eyes and pretend I wasn’t there. But once I could smell it and knew there was a staff member with me, I went into a panic, asking, ‘What’s going on? What’s happening?’
The enema guy wasn’t saying much, so I was full of nerves. He finally finished, gave me the nod again and walked out the door. I didn’t want to ask any questions; I just wanted to get showered and forget about the whole thing.
After the shower I was back in bed when in came Jenny, followed by another physio with the powerchair. Luckily, I had already been through the morning ritual because the staff on the ward only got people up every three hours. If you missed the window, you had to wait another three hours before they got you up, and it was the same for going to bed. That was the timetable: 7 am, 10 am, 1 pm, 4 pm, 7 pm and 10 pm.
I looked over at Aimee; the big event was upon us. I was apprehensive, since this would be my new life, but I was excited to at least get out: ‘Holy shit. I’m getting out!’
The staff brought the hoist in, which I was used to by now. As with my bed, the back of the toilet chair was reclined at about forty-five degrees, so up to this point I hadn’t been fully upright. They craned me out and lowered me into the powerchair. Straightaway I felt light-headed, like I was about to faint as I sat more upright. They obviously knew what to expect because they had done this a million times, but I started to drift off and all I could hear was, ‘Darren, are you with me? Are you with me?’ The voice got softer and softer until I couldn’t hear anything. Then I woke up suddenly in a forty-five-degree p
osition with Jenny looking down at me, saying, ‘You all right? You all right?’
‘Yeah, I think so.’
I wasn’t sure. Things were a bit weird because there was this upside-down face right in front me.
I tried to get my bearings, but things were a bit sketchy.
‘Oh my God. What happened?’
Jenny explained that I had blacked out, so she’d tilted me back in the chair to bring my blood pressure back to normal.
My heart sank. ‘Oh shit. Is this what I’ve got to deal with from now on?’
‘No, no,’ she replied. ‘We’ve just got to get your body used to being upright again, that’s all. It takes a bit of time to adjust.’ So for the next hour or so she tilted me up and down. Instead of moving around, the exercise involved me sitting up in the chair and getting my bearings.
I felt like I was in a straitjacket. I had a binder on – a broad elasticised corset around my middle to keep the blood pressure up in the top half of my body – then I had a seatbelt across my lap and a chest strap pinning my shoulders back and keeping me from falling out of the chair. But I still felt very unstable because I didn’t have any balance. Everything below my nipples was paralysed, so I had no core stability.
For the next half a day I didn’t even venture into the ward. I just sat with Aimee and Jenny in my room, trying to find my bearings as I drifted in and out. When I was conscious, I studied the controls on the chair or tried to focus on my balance. Being a surfer, I’ve always had good balance – it’s been second nature to me for as long as I can remember.
As I concentrated on sitting in the powerchair, my blood pressure seemed to regulate and I drifted off less and less. Once I could stay awake, I focussed more on sitting. Something about the sensation of trying to stay upright felt familiar, and at first I couldn’t work out what it was, but then it came to me: it felt exactly like sitting on my surfboard in the water. You spend a lot of time between waves, sitting beyond the break on a board that’s buoyant in water that’s fluid, so you’re forever trying to hold your balance upright. Going over waves, going through chop – you’re having to maintain your balance in a variety of conditions.
Once I made this connection between a lifetime spent sitting beyond the break and sitting in the powerchair, I found that my muscle memory, at least in my head, began to take over.
It was ten o’clock by the time I was out of bed and in the wheelchair, which still felt like an early rise for me. I’d spend the next few hours with Jenny the physio, dealing with everything from the chair – not rolling anywhere, just sitting upright, talking and having lunch. Before I knew it, I was exhausted. I had only lasted for a few hours, and by two o’clock they craned me over, back into bed.
In the afternoon, things started going in a different direction. Concerned that I might not have been fully aware of my situation, the nurses came to talk to me about spinal shock. I had first heard about it when I was in Singapore, where I was told that it lasts for a month, but now I was being told that spinal shock could last for three months. (Once we got past three months, I was told it could last for six months, and then twelve.)
Spinal shock can keep certain muscle functions dormant, so I was still in the process of adjusting, but I said to them, ‘The doctors already told me I’m never going to walk again. You don’t need to sugar-coat this for me. I don’t need false hope.’
There were too many things on my mind, and Bowie was the most important. One of the things that I pushed to the back for later was surfing. Even though I knew I wasn’t going to walk again, there was still that glimmer of hope that I would be able to surf in some form or another. It was all too confusing to take on at once.
But back in bed, in my safe zone, I was able to start to recall things and gather my feelings. When I was sitting in the chair, I was too focussed on not fainting, staying upright and balancing to really reflect on what it meant to be sitting in a wheelchair. Suddenly I thought, That felt like tough work – and it was only a few hours. How am I ever going to get around, when it takes all my concentration just to stay upright? But at the same time I knew I just had to do it. In bed, I could shut all those things away, chuck on the telly and speak to my family, almost hiding from the real world. Those were the things I’d been used to for the past month.
I fell back into the usual process; the rehab doctor came in, and she had the notes on how I had gone in the wheelchair. Even though I was concerned about blacking out so often, she seemed to think that it was all normal. The doctor decided I should be more upright in bed now as well, to try to regulate my blood pressure a bit more and get my body used to the posture.
After the doctor, Jenny came back in and gave me a timetable of what I could expect for the next few weeks, which was basically physio and OT training. She went on to say that they were pretty happy with my stability. So the following day I would be getting in the chair and going out of the room!
I spent most of that night thinking about how Bowie was going to react to seeing me in a wheelchair for the first time. It had been so easy when I first saw her – she just crawled up on the bed and gave me a cuddle.
I looked over at the powerchair, which was sat in the corner of the room nearest my bed. Surely it would be totally different for Bowie, seeing me rolling around in that thing. It wasn’t only my life that was changing.
The next day, after the ‘normal’ morning routine, I got dressed and the staff hoisted me over onto the powerchair. I sat waiting to pass out again but I felt less faint. My body’s nervous system was already adjusting to the changes caused by my paralysis by constricting some blood vessels to get more blood pumping up to my brain, so after fifteen minutes or so it was time to start getting used to driving. Aimee and Jenny were with me as I started to manoeuvre the powerchair. I didn’t have any finger motion, but I could move my hand, so the joystick control had a T-bar installed for me to slot my hand into. It proved to be quite difficult to control something like this without the dexterity in my fingers. With my first movement, I crashed into the bed, knocking everything over, before spinning around and taking out Aimee’s shins. I stopped and said, ‘Well, that wasn’t too hard. I think I’ve mastered this already,’ oblivious to the destruction I’d just caused behind me. Jenny was laughing, even though she had probably seen this kind of scene countless times before, and Aimee was half-laughing while staring at me and rubbing her legs. With the powerchair still on the slow setting, I had another go, and this time I made it to the door. I clipped it on the way past, but I was out of the room!
Being upright and mobile made it feel as if a massive new world had opened up; there were people walking around, a bunch of fresh faces. I could see the things I had only been hearing – I finally knew where the noises were coming from!
But, still, my biggest concern was what Bowie would do when she saw me in a wheelchair. She had only been walking for a little while, which was almost a blessing because she wouldn’t have had that many memories of me being able to walk, but I was conscious of it and whether she would be freaked out.
Jenny took me around the ward, explaining where everything was. Having done the loop, we were coming down the recovery corridor when, without warning, Bowie walked around the corner with Kirsty.
At first it startled me – Oh shit, this is the moment. What’s going to happen? I’m not ready for this. In a split second she took off and stumbled straight towards me. I called out, ‘Bo-Bo!’, bracing myself … But she came up to me, jumped on my feet and hugged my legs as she tried to climb onto my lap for a cuddle.
I didn’t know what to do because I was new to the wheelchair. I felt unstable and unsure of myself. All that time I’d spent thinking about what life would be like now, when the biggest anxiety I had was being a parent in a wheelchair.
I’d always wanted two main things in life: to play with my kid and share my knowledge with her. Most of my knowledge came from sport and physical activities. I dreamed of coaching, whether it was soccer or a netball
team, and teaching Bowie about the ocean and how to surf, forging the footsteps for her to maybe follow.
I knew I was going to miss the joy of throwing Bowie in the air, giving her piggyback rides and big strong bear hugs, carrying her asleep back to her bed – all those sorts of things that I hadn’t had the chance to do much of.
So it warmed my heart to see her running towards me, and instead of me picking her up and throwing her in the air, she just wanted to climb up to me. It was as if I’d always been in a wheelchair, as if it was the most natural thing in the world. I could feel the tears filling my eyes. It was such a good moment, a time when I almost thought, This is a piece of cake. All the anxiety I had built up around that moment fell away.
From then on, I always had those little avatars on my shoulders: the negative and the positive battling each other. The frustration: I’d try to grab her, but because I was locked in with seatbelts and straps, I couldn’t move. The joy: Bowie climbing up to cuddle me. I was still Daddy.
We were all laughing about Bowie’s climbing skills as Kirsty ran up and popped her on my lap. Because I only needed one hand to drive the powerchair, I put the other arm around Bowie and held her on my lap as tightly as I could. She started babbling in her usual way, saying, ‘Da-da,’ and throwing out the occasional word.
Jenny, Aimee and Kirsty followed behind as we made our way around the rest of the floor to the occupational therapy (OT) room. It looked really strange: there was a bed, but I could also see some board games on tables. Right away I was curious. We carried on down the corridor to the physio gym, which was quite a large space, about eight by ten metres. There were two padded plinths in the middle of the room, each the size of a single bed, and a couple of guys were on them doing exercises and stretches.
Owen and Eleanor Make Things Up Page 13