by Cook, R
A few days after my parents’ thirty-third wedding anniversary, I was out in the courtyard with Sarah sitting up in the big bed chair, enjoying the sunshine and wearing my hospital-issued sunglasses. Suddenly, as we were chatting, my legs started to spasm uncontrollably. I was still becoming familiar with this aspect of life as a quadriplegic, seeing my whole body move around me, but having no control over it. Sarah braced my torso lightly until the spasm stopped. To our surprise, though, the fingers on my right hand lifted and slowly rested on the rolled-up towel that was comforting my arm.
‘Rob, try and move your left hand,’ said Sarah hopefully.
But as usual, regardless of how much I willed it or stared at my hand, nothing happened.
‘OK, try your right one,’ said Sarah again, hoping for some movement.
Just as I tried to move my right hand, it twitched ever so slightly. I couldn’t believe my eyes.
‘Is it moving Sar?’ I asked excitedly.
‘Yes, it is Rob, it really is,’ she exclaimed.
We both had tears of joy in our eyes, as we tried to comprehend what was happening. It was a small muscle in my bicep that was creating the movement when it contracted, pulling my arm towards me. As I concentrated on this one little muscle it would flicker, causing my wrist to rock left and right ever so slightly. We tried to film it in case it stopped working, but it was so subtle we couldn’t see anything on replay. The more I worked at it the stronger it became and so what started as the most minute flicker created hope that I might regain more movement. It was another milestone and a big reason to keep fighting. A week later the Spinal Unit received a phone call with the terrific news that a bed was available at the rehabilitation centre. I made an emotional goodbye to all the intensive care nurses, many of whom made the effort to come down to the SU with cards and letters of encouragement. My family packed up three months’ worth of cards and flowers and pulled down all my photos and children’s paintings, and prepared me for the next stage of my recovery. As the ambulance transported me to Hampstead, I had a lot more confidence in myself for the road ahead.
15
NEW THRONE
‘Go now, Rob!’ shouted Dad from the centre traffic island.
I looked right, then left and hesitated. The cars were zooming past in both directions and in two lanes so there was little chance to get the whole way across. I didn’t want to get caught on the island in the middle. My wheelchair wasn’t built for speed and I wasn’t exactly the most competent operator yet. This everyday situation for most people, simply crossing the street, was somewhat overwhelming for me.
It was 10 January 2009, three weeks after I had arrived at Hampstead Rehabilitation Centre and the first time I had ventured outside the grounds in my motorised chair. My days were much more active than in the ICU or the Spinal Unit because I was, as the name suggests, in rehabilitation. It was important that I continue to work on the small muscle twitch in my bicep, if I was ever going to use it in day-to-day life. Each morning the staff at the centre would take me through a variety of stretches and movements to get my blood flowing. One exercise would involve me sitting up on the floor and my therapist would push my arms around behind me so that I could lean backwards with my hands taking the weight of my body. Sand bags were placed on my hands to stop them sliding away. Eventually I was able to balance like that myself, if sitting in the right position, using the muscles in the tops of my shoulders in a shrugging movement. I also used the Thera-Vital exercise machine, which moved my arms as though pedalling a bicycle. A small motor would do most of the work, with the computer registering just how much input I had in the cyclic motion. I would spend a great deal of time staring at my arms attempting to discover how to move them and contribute. Sometimes a smiley face would appear on the screen when I was doing well, with a sixteen per cent effort the most I could deliver. Although I had broken it, my neck was fast becoming a great strength to me as I used the muscles all the time, particularly for balance in a chair. If I wasn’t strapped into a seat or chair, I could easily fall forward but often I could balance my weight by throwing my head backwards. Down the track my neck began to resemble that of a rugby player as opposed to someone with a severe disability.
Friends and family had continued to come and give me their support, many visiting on several occasions for weeks at a time. I embraced their generosity and spirit. I could understand it was confronting for most to see me in a chair or the bed for the first time. Some friends openly cried in front of me, while others chose to hide their emotions. I didn’t mind how people reacted; I was just happy and grateful they’d elected to visit me at all. Not everyone could make it, though, for various reasons, but I knew they were thinking of me or including me in their prayers. I had a mate visit me from nearly every state in Australia, many from the Territory of course, and uncles, aunts and cousins all made the long journey to Adelaide just to sit with me and Sarah. Those visits back then contributed to my ability to smile today. One example of mateship was Shawn Reading, a travel partner from my bull riding days, who had a knee reconstruction at the same time and flew to Adelaide to spend days just sitting beside me during his – and my – recovery. Another notable visit was from Zebb Leslie. I had spoken to Zebb many times on the phone since the accident, but being able to see him in person was a great way to clear the air. I did not blame him at all, and I made sure he knew that. He will always be my very good mate. Understandably, Zebb did it very tough in those early months and in the years since, wanting closure, but it was hard to come by. I too wanted closure and I wanted to know why the helicopter malfunctioned. It was not pilot error as I was sitting just next to Zebb and knew enough to know it wasn’t his fault. Frustratingly, the cause of the crash was never determined, leaving us none the wiser. The wreck was flown out of the scrub and sat in a workshop in Katherine for months without any action. There were many reasons we wanted to know why we fell out of the sky, not least for insurance purposes. Over the next few years the negotiations with Suplejack’s insurance company were long and tedious as we worked to unravel many a clause in the fine print. Many days, weeks, months and years, not to mention money, were spent negotiating with lawyers, doctors and insurance companies.
For my immediate future, however, I was concentrating solely on building up enough strength to return to the Territory. I needed to start by conquering my anxiety attacks and nervousness around actually moving. When I began sitting upright in a chair, Zebb was there to first begin pushing me around. But for the best part of fourteen weeks I had been lying in a bed, with everything and everyone around me moving at a snail’s pace. Life was slow and predictable and that’s what I had become used to. The quickest thing I saw was the lunch lady wheeling in her trolley, whacking down a sandwich in front of me and wheeling out again. So when I was moved into a chair – a chair suddenly sitting upright and moving at speed – I was scared. It wasn’t as though it was actually moving fast, but it was faster than anything I’d experienced for months. Zebb was in control, pushing from behind. He was probably, in hindsight, just creeping along, but to me he was hooning. We’d hit the cracks in the concrete footpath along the garden and a shockwave would wash through me like a kid in a dodgem car for the very first time. Unfortunately, I didn’t enjoy it as much as a kid and had to ask Dad to push me the next day, while I became used to this new sensation.
In the days leading up to Christmas 2008 I was kicking goals. My tracheotomy was removed, so too the PEG in my stomach, as I was now breathing and eating without assistance. I had also been fitted with a motorised ‘town chair’, a Quantum 6000. It had one large driving wheel to take the weight underneath the seat and two smaller wheels at the front and back to balance. This time I was in control of the chair, using my chin to change direction and speed. It was a good feeling to have some independence return, however so small. I would practise driving up and down the halls of the centre, going at just the right speed. However, my new-found phobia of fast movement was taken to a new level wh
en Sarah and I took a taxi to a shopping centre. Wheeling my chair up into the back of the van was exciting, but the experience soon changed to terror. Again I found the speed of the taxi to be much too fast and I was shit scared as we motored along the highway. Sitting up in my chair I felt extremely vulnerable and I was sure we would crash into something. I really just needed to re-accustom myself to moving fast.
There were mixed feelings on Christmas Day as the end of the year grew near. Obviously, everyone wanted to be somewhere far away from the rehab centre but at the same time we were all thankful to have each other around us. Like any Christmas at Suplejack there were presents, games, phone calls and plenty of food, complete with an afternoon sleep. Sarah’s parents were also with us, however news came through that Sarah’s paternal grandmother was very ill and she died on Boxing Day in Toowoomba, Queensland. In what would be the first time Sarah had left my side in Adelaide since the accident, she returned home for a few days for the funeral of her Nan. No doubt it was a stressful and very sad time for her father and family, so it was good for Sarah to be there when they needed her. But it wasn’t long before she was back with me on New Year’s Eve to watch the fireworks on television as we reflected on the previous twelve months and looked forward to the year ahead. As positive as we tried to be, the endless devotion and long, thankless hours were taking their toll on Sarah, although she hid it well. In a diary entry in early January she wrote:
I just want my husband home. I want my Rob home here with his family; not left behind in hospital, not disabled, not a quad. I’m angry, so fucking angry and sad. He’s my strong able, independent husband but his body isn’t backing him up. It’s so hard seeing my strong husband wilt. I’m lonely, our bed is lonely. Our boys’ lives aren’t how we dreamt, this isn’t right; not how we should be – not our little family.
So there I was a week later, sitting upright in my little town chair, the control under my chin, trying to cross a busy city road. We’d decided to leave the rehab building and head out to lunch up the street. Mum, Dad, Sarah and the boys, my brothers and a couple of sisters managed the chaos of running children across the road as I tried to negotiate it myself. I had been to church and shopping centres but never out on the open street in the chair.
‘You’re right,’ someone else yelled at me. ‘Come across now!’
But, just as in the taxi on my ride of terror, my body kept second-guessing itself and hesitating. I had never before been required to put my trust in something I could not control. I had always been an independent person who took charge of every situation, whether it was trying to pull down a cleanskin bull or fixing a vehicle stranded in the desert, but there I was scared of crossing the road.
‘Bugger this,’ I said. ‘I’m going up to the lights to the pedestrian crossing.’
It wasn’t as simple as I’d imagined. Even though the cars were stopped at the T-intersection, I still couldn’t get myself to move in front of the traffic. I was delaying the inevitable. After about twenty minutes of playing mind games with myself, I finally wheeled my chair across to the other side where the small café was. By now everyone was waiting for me and ordering food, sitting outside on the footpath. I sat with my back to the intersection behind me, as someone swung my chin control away from in front of me so I could eat a sandwich and have a milkshake. A few minutes later the sound of screeching tyres, busting glass and crashing metal ripped through the air, as my family dived in all directions to escape whatever was happening behind me. Unbeknown to me, one vehicle had failed to stop and rear-ended a stationary car before becoming airborne and crashing into the traffic lights. Meanwhile, another car entering the intersection T-boned the crashed car and was spinning out of control, heading straight for me and the shopfront.
‘Look out!’ screamed Mum at the driver, who was just five metres away. ‘Turn, turn, turn away!’
The car screeched to a halt as it slammed into the gutter just near me but fortunately didn’t mount the kerb. Of course, then came the ambulance, police and fire crews to assist in cleaning up the accident site. It didn’t appear anyone was seriously hurt. But that was enough for me, as I got my chin control back and made for the safety of the rehab centre once more.
‘Bugger the sandwich and milkshake,’ I told Dad, ‘I’ll be quite happy with the food at Hampstead from now on.’
It was a frightening experience and it reinforced that feeling of vulnerability I’d had earlier. If I wasn’t quick enough to drive the chair away from situations like that, or the chair was simply switched off, I could be in a great deal of trouble.
I could have dwelled on that moment of horror, as I sat helplessly in the path of an out-of-control car careering towards me. I could have thought how shit my life had really become, not even being able to protect myself in such a situation, let alone my children. But I had learnt to put moments like those behind me. I also had the inspiration of two individuals who would define the sort of quadriplegic I was to be. Just as my mother had said, it was up to me to work out what sort of life I would lead. These two people, who were also both patients at the rehab centre, certainly put things into perspective for me. I met the first patient in the exercise room one day as I was waiting for my physiotherapist. I sat in my town chair with my two ankles belted to the foot plates, my knees strapped together, a seat belt around my waist and a harness over my shoulders. As well as those, my arms were tied to the arm rests and a strap went around my forehead, keeping it upright in the headrest. Being tied down was a precautionary measure to stop me falling out of the chair should I begin to spasm, but I might as well have been in a straitjacket. I was alone until a healthy, good-looking and muscled young bloke came wheeling in on a chair using his arms, having been paralysed from the hips down in a motorcycle accident. I had seen him before and knew he had a wife and two young children who had spent time with Sarah when they visited. As I continued to watch, he lifted himself straight out of the chair and onto a massage plinth in front of me, before moving through some basic stretch exercises on his back. Once he was finished he slid his backside to the edge of the plinth and sat looking at me. He looked just like an able-bodied person, very fit with strong shoulders.
‘How are you going?’ I asked.
‘Well, I’m having a bad day,’ he replied.
‘Oh, are you?’ I sympathised.
‘Yeah, no one seems to understand what I’m going through,’ he said in a depressed manner. ‘It doesn’t matter who I talk to, they’ve all got advice but they don’t know what I’m going through mentally.’
‘Oh, righto,’ I said.
‘Do you know what I mean?’ he asked.
‘Nah mate, I don’t really have any idea,’ I said drily.
‘Well the other night I was sitting at home watching the footy with some mates. The next minute my two-year-old appears with a football and asks me to teach him how to kick and my mate jumps up and shows my boy. Do you know what that fucking feels like?’ he asked me. ‘You wouldn’t have any idea mate.’
‘No, probably not,’ I said, not wanting to agitate him further.
‘No, no you don’t,’ he said angrily. ‘And no one does, but everyone has this terrific advice, don’t they?’
I sat there in disbelief as he swore a bit more, lifted himself back into his chair and wheeled himself out of the room. Soon the therapist arrived and began untying me from my chair where I’d been sitting like a mad old bronc horse, spider-hobbled and chained to a fence rail. My mind stayed with that conversation for the rest of the afternoon and I even consulted Dad on what was said, as it had taken me by surprise. It occurred to us that there might be two types of disabilities.
‘You’re either completely fucked, like you,’ said Dad thoughtfully. ‘Or you’re able to get around in a manual chair. If you can move your arms, you’re not disabled.’
It was an interesting perspective and boy, how I wished I could sit at home drinking beer with my mates while watching the footy. I’d have taken that injury in
a heartbeat. Having met that bloke who was pissed off at the world, rightly or wrongly, while being ignorant of the bigger picture, made me realise something very important. Regardless of what position someone finds themself in, whether it’s quadriplegia or a missing finger, everyone’s got their own story and we should never compare what they’re experiencing. Everyone has their own battles, which affect them in different ways, but just because someone is in a wheelchair doesn’t give them the right to be a dickhead.