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27 May

In the hospital – Recovery and the spinal unit

Picture 035In 2003 my life changed forever in Mooloolaba, Queensland. I landed headfirst on a sandbar while swimming in the surf and ended up in a four-day coma. The experience of being in a coma was terrifying, and not something I’d ever want to go back to. When I woke up, I saw the photo of my son, which normally sat by my bedside. I thought I was at home, until I looked up and saw my fiancée Julie standing by the bed with the doctor. The doctor explained that I had stretched my spinal cord between C2 and C3, and that for the rest of my life I would need a ventilator to breathe, and that I would not walk again. Even four days after the accident I was still not out of the woods, as I’d swallowed so much seawater that my lungs had collapsed. He also said I would be lucky to be able to speak again. At that moment there were so many tubes and hoses in my mouth and nose keeping me alive that I wasn’t able to speak even if my lungs were okay.

I thought to myself that I was lucky to still be alive, and thought back on my time during a coma. I closed my eyes and slipped into silent prayer. I asked the man upstairs if he could give just one more chance to me, promising that I would be a better person. I felt relaxed and I knew everything was going to be okay. I knew that there would be a lot of hard work and hard times to get used to this new life, though, and that many challenges faced me. The first 5 months in hospital I spent in Intensive Care; every day was a challenge. The same time I was trying to survive, in my mind I was determined to beat the odds. I refused to dwell on what the doctors had said I wouldn’t be able to do, and instead focused on what I could achieve. I was determined to walk again, and to breathe unassisted.

Once, I woke up to find a nurse on my chest in the middle of resuscitating me, determined not to let me die on her watch. I had no idea what happened and for a couple of minutes I was very confused, surrounded by doctors and wondering what was going on. The nurse told me that I’d stopped breathing for a couple of minutes!

The whole time I was there, I didn’t dwell on what I’d lost because I was so determined at getting stronger in any way I could, to breathe on my own and to walk. After 5 months I achieved the first goal; my lungs finally healed enough for me to breathe independently. Learning to breathe again and also to speak was very difficult. I took the challenges in stride and my mindset was as positive and determined as ever – I was going to get down to the spinal unit to recover, I was going to get through rehabilitation, and I was going to walk out of that hospital.

While recovering, I had to reevaluate a lot of the ways I thought about the world and myself, and the things I’d taken for granted. I’d always been a very physical guy, an ex-football player and pretty active person, and now I was lying in bed relying on someone else to do everything for me. I felt like a baby, I couldn’t control bowel, bladder, body. I felt a lot of loss but was determined to stay positive at the same time, and now I have a much greater appreciation for many things. That was the start of changing how I looked at life. For example, I learned to appreciate showers. All I had in the ICU was a bed bath every day for months on end, but when I got down to the spinal unit I could finally feel the water run over my body and hear it patter on the tiles. Small things that I didn’t realise I’d missed; they can be the hardest to come to terms with but the greatest to rediscover.

I was so lucky to have the support of my then-fiancee and now wife, Julie, and my family and friends. Every day, even when I couldn’t speak, I would have someone to keep my company. It was nice to be able to hear family and friends chatting away in my room, giving me something to fight for and the drive to recover. My breathing finally improved enough for me to be transferred to the Spinal Unit, so off I went on the next phase of my recovery.

I remember the first day they tried to sit me up on a chair; I blacked out, and woke up lying in bed again, where the physio explained what happened. It would take quite a while for my blood pressure to get stronger and for me to regain enough core strength to sit properly, but I kept trying anyway. Two days and several attempts later, I finally managed to sit up in a chair without blacking up, and it was so good to see the world sitting up instead of lying down for a change. The first thing I asked was whether someone could take me outside to get a bit of fresh air, as I was feeling not a little claustrophobic The nurses and doctors were fantastic and I wouldn’t trade them for the world, but the hospital itself is not something I miss. There is a definite feeling of negativity and melancholy around, understandable, but not positive. I knew I had to make a conscious effort to challenge the negative feelings and to stay strong in my determination; the hope that I would walk out of the hospital never left me. When I went to the physio I would push myself to the limit and he would encourage my efforts. I’m telling you, I was truly sure I would walk out of the spinal unit, I was so determined.

Eventually, though, I had to come to terms with what I would regain and what I wouldn’t. I had gotten a fair amount of my strength back but not all, and I accepted that I wasn’t going to walk out after all. So I focused on the positive. I had learned so much, about myself and the world. I discovered new strengths. I had made some amazing friends in the spinal unit and we tried to make the most of our time there, having fun, cheering each other on through therapy and keeping each other focused. Several people from out of town were in the spinal unit and couldn’t see their families, so I made sure to include them when I had visitors; it felt like one big family. We all had different attitudes but we all tried to help each other. Some of the younger guys there, I understood their frustration. I was only 32 but I’d still done a fair bit in life. Some of them were only 16-20 years old. I tried my best to give them encouragement and chat with them, to make the most of it while they’re in rehab and to focus on what they’re going to get back. There is still life after rehab, after all. I saw some of them start to turn the right way and concentrate on their therapy with the determination I myself felt. But I could see it in their faces, the sadness and anger that this had happened to them when they were so young and had so much to do.

After being in rehab in the spinal unit for 4 months, 9 months after being admitted, I finally got the good news from my doctor that I was going to be discharged in a week! I was so excited, but when I told him that I didn’t have a wheelchair accessible house, I was told I’d be going to a nursing home instead. At the time, if you didn’t have great insurance or your family didn’t have the resources to care for you, that’s where you ended up. I knew it was an issue with the government and not the doctor, and that he didn’t have much of a choice, but I was so surprised. That’s just what the system was like for people with spinal injury at the time. I thought to myself, I’m probably here for a reason, to change things for the better and to change the system not only for myself and my family but the other people with spinal injury who would come after me and who deserved to be able to live in the community with their families.

That’s when I decided to take up a campaign to change this system for the better. Myself, my support network and the other guys in the spinal unit all got together to figure out what we could do to change things. Spinal Life Australia, then called Spinal Injuries Association, had come on board, and had arranged a meeting with the Minister for Disability on our behalf, at a building across the road from the hospital. Together with the CEO and executive of Spinal Life Australia, myself and the guys from the spinal unit met with Warren Pitt to discuss our requirements, and he seemed to listen. A fortnight later, Spinal Life Australia withdrew their support from our campaign. I was very disappointed that an organisation dedicated to helping people with spinal injury would come to that decision, but we pushed on with the campaign without them. It came to the time where the other guys in the campaign were ready to be discharged, as there was pressure to get the beds in the ward freed up for new or transferred patients. All but one of them were sent home with no care or support beyond what their family could scrape together. I was determined that they get the support they deserved, so on my own I took the campaign to the next level and went on a hunger strike in protest. The media got hold of my story, and it ended up on Channel 10 and Channel 9’s A Current Affair. Shortly after that, my fiancée got a call from the Minister of Disability’s office with an offer. Upon inspection of the document they gave me, I realised that the offer to provide my home modifications and support was only given to me, though we had all campaigned together to get support for all the patients. That was unacceptable, so I refused, and sent the offer back.

Three days later, the Minister’s office got in touch with me again, and they finally agreed that the situation for people with spinal injury was unacceptable. To my great relief it was announced on the news that afternoon that all people with spinal injury would receive a funding package and the support to ensure we did not get sent to nursing homes any longer. I was proud to have played a part in that important campaign and to be able to change things for the better, not only for myself and my now-wife but all those who came after me in the Spinal Unit. At this point, Spinal Life Australia reappeared, and offered to be my service provider for my care and modifications. I was so impatient to get out of the hospital and home again, I agreed. I was discharged from the hospital in 2004, and even though I didn’t walk out of that hospital after all, we did make a huge difference for the future of people with spinal injury and their family in Queensland.

When I was discharged, I thought I was ready for what was out there in the community, but there were more challenges to face than I’d thought. But my hope to walk again is not gone; nothing and nobody will take that from me. Next week, next month, next year – I’m working with what I have now, but I haven’t given up that goal. I’ve just found a way to live well while I work towards it, and that’s the real challenge.

~Malakai

You can read more about those adjustment challenges in our earlier blog posts.