Everything to Live For: The Inspirational Story of Turia Pitt

by Pitt, Turia

  Having my dressings changed every day was really painful and took hours; it wasn’t like it could be done once and it would all be over. I’d lie awake at night thinking about how I’d have to go through the whole procedure again the next day. I didn’t cope well with the pain; if it had only been once or restricted to a small part of my body I think I would’ve been fine; but it was everywhere and every day.

  They plied me with different types of painkillers: I would become tolerant to one drug and they would have to change to another one. I sometimes even got the ‘green whistle’, a drug that ambulance officers used when someone was in acute pain with broken bones or something. I suspect the reason I didn’t cope well was because I wasn’t in the best mental state and hadn’t yet accepted what had happened to me.

  I was grateful to the lovely nurses who tried to make it easier for me to bear. My favourite nurse was Penny Gutierrez, a beautiful woman who told me that life can deal us some rotten cards sometimes but it was what you did with the hand you had been dealt that was important. I have always remembered those words and sometimes use it in my public speeches.

  I loved my surgeons too; they were always super-confident when talking to me.

  A particular hurdle was trying to gain weight. When I was admitted I weighed 63 kilograms. During my five months in hospital I lost a staggering 16 kilograms. All my fat, of which I had little to begin with anyway, was long gone and my body was eating away my muscles. As much as I tried to gain weight, I couldn’t; all my food would be consumed by the healing process of my wounds. In the early months I had a nose tube put in that went straight to my stomach, feeding me high-kilojoule liquid food. I hated the nose tube – it hurt every time I twisted my head and every time I swallowed. When finally I could eat solid food, I would eat and eat and eat and I still lost weight.

  The love and care Michael and Mum gave me all those months in hospital was inspiring. They never gave up urging me on and it can’t have been easy. I remember once the physios were trying to get me to walk up a single stair and Mum and Michael kept coaxing me on saying, ‘You can do it’ and ‘Well done’ and I just lost it at both of them. I said to Michael, ‘What are you cheering for – your fucking cripple of a girlfriend?’ He looked so hurt and I was pleased that I managed to hurt him.

  Michael came every single day; Mum came every day for a week every second week. They brought loads of yummy food and books and good luck charms and flowers and family photos and letters from my little brothers and get well messages from everybody and T-shirts with positive slogans.

  Michael was always so encouraging, talking about our future together, never failing to comment on the progress I was making or how great I was looking and how beautiful my eyes were.

  As for Mum, it didn’t matter what it was, she would find something positive to say. She said I was born with a manu (big) nose and told me that when I was little I wanted to have a pupa (small) nose and now I did. About my fingers she said it was wonderful that I still had my hands and I would learn to do all sorts of things with what fingers I had left. When she brushed my hair she told me what beautiful hair I had. When she painted my toenails she said what pretty toes I had.

  When she massaged my feet she reminded me that I had always been into creative visualisation with my running and now I should visualise myself differently – to call on my imagination and visualise doing all the things I used to do. Even running.

  We used to play a game just to make ourselves laugh: outside the fire exit of the Burns Unit I would gaze at the cows in the paddock and pretend I was the Queen and talking to all my subjects. Mum would be my lady-in-waiting and Michael would be my suitor.

  One of my favourite memories of when I was in hospital was one day when it was raining. Michael was pushing me around in a wheelchair as I was still quite frail and I decided I wanted to feel the rain on my face – it’s the sort of thing most of us take for granted. So Michael was persuaded to wheel me outside in the rain and it felt wonderful, like a completely new experience.

  At first the thought of what was in front of me was daunting. Michael and Mum would tell me about all the things I would be able to do again in a few years. I would think, Fuck, a few years! Every time a patient in the Burns Unit went home, I would think, When do I go home? I wanted to run, surf and be back at work again. Instead I had to be content with being able to do the most basic of tasks: trying to get my lips together; trying to touch my face with my hands; getting my shoulder range past 90 degrees; trying to eat with the extendable spoon; trying to sit on the toilet seat. While I was happy when I achieved any of these tasks, the actions were still tinged with despair. I couldn’t even walk up a flight of stairs – how would I ever run again, let alone be strong enough to charge into the surf.

  I also had a bad anaesthetic experience: the anaesthetist tried to intubate me while I was awake, after which I was not able to eat for a month. This put me off having operations altogether. So then I would think, If I can’t even handle an operation, how am I going to have all my operations in the future? It infuriated me more when Mum and Michael said to me ‘You’ll get through it.’ Why wouldn’t they just let me die?

  I was on a roller-coaster of emotions; sometimes I would use my angry thoughts at the race organisers to push myself even harder. I would think, Fuck you if you think you can kill me; I’m going to come back bigger than ever. And there were some days when I would just be overwhelmed by it all and I just wanted to watch TV. I would go from feeling positive and confident that I was going to ‘beat’ this accident and then I would feel overwhelmed again and hate everyone, including myself.

  One thing that helped me to stay positive was to keep busy. Mum and Michael would arrive at the hospital and be there at 7.30 am. After breakfast I would go for a training session with Michael or Genji. Genji was in charge of my ‘training’ while I was in hospital and later in rehab. He would come in the early morning if he wasn’t at work. He bought me some strap-on weights and we got straight into it – squats (well, sort of), shoulder raises and biceps – whatever I could manage with the ossification in my elbows.

  When Dad came to visit we did more yoga-type movements.

  At 9 am I would have physio. Then I would have a dressing. After lunch I would have speech therapy. Then I’d fall asleep and the physios would wake me up for an afternoon session. Then Mum, Michael and I would walk the seven flights of stairs down and then up again. Then, to help my knees bend, we would have to put the CPM (Continuous Pressing Machine) on my legs for two hours as well as use a special splint to help open my mouth. At the end of the day I would usually be so exhausted that I would be grateful to be left alone to sleep.

  Michael initially heard from 60 Minutes producer Ali Smith after they’d done their first piece on the fire and the rescue – just after it happened. There was no way I could have been involved in that – I wasn’t even conscious – but Ali wrote to me and said that if in the future the time was right, would I consider meeting her to do a story with 60 Minutes? Obviously, the fire had created a lot of media attention and there was a lot of interest in hearing my and Kate’s stories.

  The first time I tried the mask on, Michael decided to take me outside; I didn’t like it and all I could think about was how bloody uncomfortable it was. Gradually I built up the tolerance to spend more and more time in the mask but it took me a couple of months before I started to sleep in it. After that I wore it for 23 hours a day. Since then I have had to get used to being without it and getting used to the new Turia.

  By December I felt I was ready to talk to Ali and I got Michael to call her. I told her I was considering doing a story because I wanted to show people that no matter what hurdles you are faced with, you can overcome them. I wanted to inspire others and that was my main motivation. I made it clear that I didn’t want to waste my time using the media to vent my anger at the race organisers for failing to properly ensure the safety of their competitors. I didn’t want to be part of a sad and angry stor
y.

  I invited Ali to come to the Concord Hospital Burns Unit in early December. The plan was that she would meet Michael first so he could explain the extent of my injuries to her before the three of us talked. I had just had surgery on my face and decided to let her see me with my mask off.

  This was not the first time I’d been seen without my mask; one day Mum and Michael had wheeled me out into the waiting room and people came over and said things like, ‘Oh, my God; what happened to him?’ or ‘I’ll pray for him.’ I was a skinny skinhead and they all thought I was a boy. Maybe they also thought Michael was my gay lover.

  The meeting with Ali went well and she discussed how she thought they’d present my story; a week later she brought the 60 Minutes reporter Michael Usher to meet me. We connected straight away, which was good, because from our discussions I knew I was going to have a lot to do with him. The theme of my story was me achieving milestones, filmed in small sequences and presented on several 60 Minutes programs over the next couple of years.

  The first filming was done in that December. I was actually happy to do the filming – it made me feel good about myself and I was also happy that people were interested in my story. I think this interest stems from the circumstances of the fire – an ultramarathon plus the failings of the organisers. I reminded myself all the time that I was ‘lucky’ – if I had been burnt in a house fire I’m not sure many people would have cared.

  I visualised myself getting out of hospital for Christmas Day. Mum tried to talk me into having a family feast at the hospital. No way. I wanted to be at Genji’s place, where everyone else in the family was gathering. They didn’t understand that what I wanted was a sense of normalcy.

  I’d had an operation three weeks before Christmas, and Michael and Mum were both concerned about me pushing myself too hard and thought that perhaps it would be easier for me to stay in hospital. Normal procedure after an operation is bed rest for five days but my legs managed to get blisters so I was on bed rest for another five days. This left me less than two weeks to build up my strength to climb two flights of stairs as well as practise getting in and out of a car.

  I’d never even seen where Genji and Angela lived. They had an upstairs flat so I knew I had to practise climbing stairs, and I did. It was hard but each stair was an achievement. The skin over my knees was as hard as a rock so it hurt just to bend them that little bit needed to climb stairs.

  The other problem I faced was my balance: at first I would only climb stairs one at a time and only if Michael and Mum were on either side of me.

  In the beginning I couldn’t climb a single stair without the support of two people and it took about ten minutes just to climb three stairs. I was happy when I was finally able to do this. After practising stairs on a daily basis, I was able to climb a full level by myself. I told Professor Maitz, hoping he would be happy with me, and he said, ‘So . . . why not do them all?’ I thought, Fuck you, I will do them all. I got to Level 5 and then needed to lie down for the rest of the day!

  My next goal was to complete the whole seven levels from the Burns Unit to the ground floor and back up again. Every day I pushed myself as hard as I could and to climb one more level – a lot of lying down afterwards was needed. I finally conquered my goal and managed to do all the seven levels in thirty minutes. After that, whenever I wanted to go outside, which was every day, I made myself walk down the stairs to the ground floor and then back up to the seventh floor. In the end I could do that three times a day and had cut my time down to about ten minutes. Today, I always take the stairs anywhere I go; I reckon if you’ve got legs you should use them!

  I loved going to Genji and Angela’s on Christmas Day, even though I cried when I first saw everyone. Mum had gone overboard and covered all the mirrors with sarongs, thinking it was best to protect me from seeing myself. By then I was actually starting to think I should be facing up to my appearance, not hiding from it, and I’d even shown my face to Ali from 60 Minutes. I knew Mum meant well, and we would have to deal with the mirror stuff later.

  It was so great to see my younger brothers; Toriki confessed to me, with teary eyes, how happy he was that I was still here.

  I was just so happy to be at Genji’s. It was a real achievement – very emotional and tiring, but I did it. I knew then – and so did everyone helping me to get better – that I could push myself and get results.

  Next I visualised myself walking out of the hospital for good – the Burns Unit was becoming less challenging and I felt I had outgrown it. My doctors agreed. Michael and Mum checked out a rehabilitation place on the north side of Sydney. Michael said it was awful but Mum, looking for a positive angle, told him, ‘No, look, there are some beautiful frangipani trees outside; it’s going to be alright.’ So it was arranged for me to stay there for a few weeks.

  The day I left Concord Hospital was an important milestone and also a bit emotional. Everyone I knew in the whole place came to say goodbye and wish me well. 60 Minutes came along to film the rehab milestone.

  Unfortunately, I hated the rehab place. The staff was professional but the facilities were pretty third world. I felt like a fish out of water as most of the people’s rehab needs were so different to mine – there were lots of people with brain injuries, like car accident victims and elderly people, who had had strokes or else accidents such as falls. There was only one other burns survivor there whom I unfortunately didn’t get to talk to because he had an infection.

  Michael was right – it was awful. The showers were disgusting and he worried about me getting infections. So much for Mum’s beautiful trees!

  My first night I was there I started feeling sick and I felt even worse the next day – I actually thought I was dying. The next day a nurse apologised to me for forgetting to give me some of my pills! It turned out that I was suffering withdrawal symptoms from not having all my drugs. They had explained to me at hospital that although I wasn’t in as much pain, I would still need to take painkillers and I would need to wean off them slowly.

  When Michael and Mum weren’t there I was lonely, especially at night. The second week I was there I was allowed out to go to Genji and Angela’s for the weekend. I slept next to Michael and cried with happiness. That was what I really needed: to be with the people I loved.

  Michael was worried about me in that rehab centre and wanted to get me out. I begged Mum to stay overnight with me once and they found a bed for her; I think staying with me that night made her realise how miserable and depressed I was. Michael and Mum then campaigned for me to go home earlier.

  We decided that the best place for me to stay when I left the hospital system was with Michael at his parents’ place. Gary and Julie’s house was in a quiet cul-de-sac and quite private, which I liked because I got so exhausted and I felt I needed my privacy.

  Michael had learnt how to do all my dressing changes at Concord and did them all while I was at rehab and this was the really major thing. Of course, Michael had been caring for me from the beginning – feeding me, giving me my pills, putting my mouth splint in, putting my compression garments on, brushing my teeth . . . everything. I made sure I could do all my toileting before leaving rehab as I thought it was important to maintain some dignity.

  Julie organised a local physiotherapist, Janine Austen, to look after me. Michael arranged for another local, Gregg Orphin, an exercise physiologist who did rehabilitation – he knew him through surfing – to work with me. Eventually I had a fantastic local team: my personal trainer, Emily Bingham; my general practitioner, Herbert Chee; the owner of the Xtreme Fitness gym, Lloyd Egan; masseuse, Nicola Parnell; my yoga instructor, Himani; and my psychologist, Jennifer Clarke. So three weeks after I went into rehab, I was out again.

  It was exciting to be on my way home. It was a tight fit getting the three amigos and everything else into Michael’s little car; we were loaded up with my ‘toilet seat’ – a raised platform, higher than a toilet – a cushion for me because I got a sore bum from sitting
plus all the stuff I had accumulated while I was in hospital – cards, gifts and clothing. The trip was long and slow as we had to stop a few times because I needed to stretch my skin. After even an hour in the car it was so hard just to walk because my skin was as stiff as a board. I was wearing my ‘uniform’ – my pressure suit and my mask.

  FIFTEEN

  MORE MILESTONES

  WHILE I HAD BEEN REALLY LONGING TO GET HOME, ONCE there it was a little disappointing because I was hit with the reality of not being able to do all the things I used to do – I couldn’t surf, I couldn’t swim, I couldn’t run and I couldn’t hang out with my friends. I was in a lot of pain and taking four different kinds of prescription painkillers. Michael used to encourage me to get up and walk around and I’d have a big whinge because it hurt. He also made me go for walks before physio, which I dreaded because I was so stiff. Calcium builds up in the joints of people with severe burns and that makes it difficult to flex our joints. So I couldn’t bend my elbow to scratch myself or shower myself. The scar tissue also limited my movements. But I set myself milestones. One was to be able to touch my face with my both hands.

  Because I had left rehab early I was initially going to physio each day for an hour and a half. Janine was terrific; she would work with me doing passive, gentle stretching to try to get some movement back so I could gradually start to do a few things unaided. Physio was painful and I had to have a lot of painkillers to get me through a session with Janine.

  When I first started going to Janine’s I had a lot of open wounds that were slow to heal. When the grafts broke down I’d have to go back to hospital to have them regrafted; I’d stay overnight. I also went back to hospital several times for other procedures on my nose, lips and hands.