By Your Side Read online

  My cousin Mitchel, who was five years younger, went around trying to convince people to vote for me, throwing in the promise of chips or lollies if they were undecided. I wrote a speech outlining my credentials and got up on stage and delivered it in front of the whole school. It was nerve-racking but I was determined, and that must have shown through because I was successfully elected. I thanked Mitchel for all his help and told him he was the best campaign manager a guy could have.

  Mel and I went to different high schools, but she continued to look out for me. She was generous with advice about how to navigate adolescence and the really important things, like fashion and the girls I admired from afar. We’d often go clothes shopping and she was great because she didn’t sugar-coat her opinions and she didn’t have shades of grey: it was either an absolute Yes or a ‘don’t even think about it’ No, with nothing in between. If she told me something suited me I could be confident it did.

  My Catholic high school was brand new; my year was the first to go through. It was very technology-driven (apparently we were the first students in the state to be issued laptops) and very interested in exploring new ways of learning, like linking subjects together to draw out the connections and referring to teachers as ‘learning advisors’. That was great, in theory, but I found it hard to adapt. I’d been an average student in most subjects at primary school although I had excelled in maths. I found it difficult to get on top of things when subjects were combined and there were no clear boundaries.

  I often seemed to get into trouble. I wasn’t really naughty but I did have a loud voice, so if there were several kids talking in class it would inevitably be me the teacher caught. I would also do pretty much anything to get a laugh from my mates and didn’t know when to stop before I pushed the teacher’s patience too far and got sent out of class.

  When I was in Year 8 I started going along with a group of soccer friends once a fortnight to cheer on Wollongong’s professional basketball team, the Hawks. Our parents were happy for us to go because it was a good, wholesome activity where we could have fun and do a little age-appropriate socialising. Someone in the group knew a guy who often had free tickets to give away, and we would meet up with him outside the stadium. A few of my mates knew girls who went to a Catholic girls’ school nearby. We frequently saw Kirsty and Chantelle and the others at the games and would chat with them while we were hanging around, hoping for the freebies. We all got to know each other and would joke about and share photos afterwards on MySpace (back in the day before Facebook or smartphones).

  Some of the photos included a friend of theirs called Cass, and from time to time they would talk about inviting her along. My mates and I were full of encouragement, saying, ‘Yes, bring her along, we hear she’s a really nice girl.’ Lucky they couldn’t read our thoughts (although we were teenage boys, so maybe it wasn’t that hard), because what we were thinking was, ‘Bring her along because if those photos are anything to go by, she’s hot as!’ But months went by and she was never at the games.

  Then one Friday night I was there with my friends Franc, Adrian and Luke Tomic, and Chantelle was waiting outside with someone new. Someone with long black hair and perfect olive skin, wearing a black top and leopard-print leggings. Someone stunning.

  Chantelle came up and gave me a friendly hug, then introduced me: ‘This is my friend, Cass. We finally convinced her to come! Cass, this is Jason.’

  ‘Oh hey, I’ve heard lots about you,’ Cass said, turning to me with a smile.

  As I would find out later, her full name was Cassandra Nascimento, though she always went by Cass or Cassie. Her family was also of European background, although in her case it was Portuguese. She was seven months younger than me and lived in Kanahooka, on the other side of Lake Illawarra, probably not even 10 minutes away as the crow flies straight across the water, but about 25 minutes’ drive.

  I tried to get my mouth to work, to say something normal, to keep the conversation going. But it was as if I was back in Year 4, struck dumb every time my crush, Grace, looked my way. I might have managed to get out a ‘Hey’, but I’m not even sure about that. Cass was so beautiful I couldn’t think, let alone speak. Fortunately, Franc butted into the ‘conversation’ at that point to say, ‘Are we going in or what?’ We headed in and Franc kept easily chatting to the girls while we found our seats. I spent the entire game trying to think of something to say but nothing came. All I could do at the end of the night as we headed off home was nod in her general direction.

  Thank goodness for social media. A bunch of us used to go on MSN (technically Windows Live Messenger) to connect online, and Cass and I would communicate there. Just like the rest of our friends, we’d chat about nothing in particular: whatever everyone was doing that weekend, or what sporting matches we had coming up or what food we wished we were eating right at that moment – which is how Cass and I became ‘kebab buddies’. This turned into a running joke where we would each try to convince the other that our chosen kebabs, chicken for her, meat for me, were the only ones worth eating. I got more used to chatting with Cass, but even online it would take me a really long time to reply while I tried to think of the perfect thing to say. In person, I was still nervous and tongue-tied around her because she was so damn hot!

  But once after a game we ended up wandering around the mall together, just the two of us, laughing and mucking about. I discovered that there was a lot more to Cass than just her looks – she had a great sense of humour and was really fun to be around. We stayed in touch for a while after the basketball season ended. We would occasionally chat online, and sometimes Cass’s group of friends would come to watch my team play soccer. I always tried hard on the pitch but when Cass was on the sidelines I found myself digging out every last bit of effort, hoping to impress her.

  However, the groups drifted apart and by the time we had moved into Year 10 we were pretty much out of contact. So it was a real shock when our mutual friend Kirsty called in early September, crying, to tell me Cassie had been diagnosed with a brain tumour. I had no idea what that really meant. I knew that cancer was a disease that could kill you, but I had never heard the word ‘tumour’ before and didn’t connect it with cancer. Clearly it wasn’t good, but I assumed the condition was something doctors could treat – after all, she was only 16. My thoughts were soon turned elsewhere, because within a week or two of Kirsty’s call I was struggling with my own medical condition, and at the time what was happening to me felt absolutely devastating.

  It had started on a normal school day. When Dad picked me up I told him that it felt like my lips were swelling up. My home-packed lunch that day had been so strangely bland that when we got home I mentioned to Mum that I thought she should switch back to the salami she usually bought instead of the new one she’d tried because it was so tasteless. Puzzled, she told me she hadn’t switched brands, it was the same as always. I thought that was a bit odd, but oh well.

  I got some salad from the fridge as a snack, but when I started to eat it I realised my jaw was moving weirdly and I couldn’t swallow properly. I then tried to sip from a soft drink can only to have half of it spill out of my mouth, which I could no longer control. I looked in the mirror and thought to myself, WTF!

  The right side of my face had dropped down in the oddest way and I couldn’t close that eye. Dad took me straight to the hospital. The diagnosis was Bell’s palsy.

  I’d never heard of this before, but the doctor explained it was a neurological condition (meaning it affects the nervous system) that specifically targets the nerve that connects to the muscles controlling the face and the ears, as well as the salivary and tear glands. No-one knows for sure what triggers it, although viral infections or autoimmune problems are the most likely suspects. ‘Okay, so what’s the treatment?’ we asked him.

  ‘There isn’t any,’ he said, ‘but it’s very likely it will get better on its own.’

  ‘Hang on, very likely?

  That’s not exactly a guarantee, i
s it?’ He explained that in 90 percent of cases it clears up completely, although that can take anywhere between a few months and a year, and the other 10 percent tend to be older people with other health problems. So, in my case, things should go back to normal at some point.

  ‘And what do I do in the meantime?’ I asked him.

  There was nothing to be done. I could take pain relief if I needed it; I’d probably find that I required ‘artificial tear’ eye drops and I could use medical glue to keep the affected eye closed at night. Other than that, I just had to wait it out and hope everything came good.

  I wanted to stay away from school, but that wasn’t an option – I couldn’t just miss however many months it was going to take. It was so hard to walk back through those gates the next day, with everyone staring at me. When I came into my classroom for first period, everyone laughed and told me to stop pulling faces. Because my mouth was in such a strange position, I couldn’t speak clearly and I was constantly dribbling when I talked, so saying, ‘I cannnn’t heellp it,’ just made them laugh all the harder. At lunch time I went for a walk around the school grounds, and a group of Year 7 kids ran off in horror because they found my face so frightening.

  Once my friends understood my condition, they became really supportive. If it did come up they’d say something encouraging like, ‘We can’t even notice it anymore!’. I did find it hard to pay attention in class, though. My eyes were so sensitive it was difficult to focus on the board, and if I didn’t treat them they watered to the point where the paper I was trying to write on would be spattered with ‘tears’. One of my friends, Hannah, was so determined to help me she would administer the eye drops I needed every day to try to minimise the watering.

  I got better at hiding how much everyone else’s reactions hurt, but the hurt itself didn’t go away. I became known as ‘that Bell’s palsy kid’. As a 16-year-old boy, just at the age when girls and appearance really, really matter, it was very difficult to deal with. There were some particularly horrible moments, with a standout being at an inter-school soccer game.

  It had been an effort to keep up with my soccer, because even though I wasn’t in any physical pain the condition was absolutely draining. But the game was always a release for me: being on the field with my mates, focusing on nothing but the ball was like an escape from reality. Not this day, though. The other team had been taunting me through the match, calling me a freak. That wasn’t very nice but I figured they were just sledging, trying to put me off my game. The match ended on a 1–1 draw. We went into extra time, but the score was still level at the end of that, so we had to have a penalty shoot-out. It all came down to the fifth shot, and the job fell to me. I missed, meaning the other team won. Their reaction was to jump around chanting, ‘The retard missed, the retard missed!’ Nice Christian boys, eh? Two of their teachers who were on the sidelines and the referee must have heard them but did nothing.

  I left the field crying and one of my teammates’ mums started yelling at them but they just kept up the chant. The humiliation and anger and sadness left me feeling so exhausted I didn’t even have the energy to say anything back. I cried and cried at home. Dad, who was always there for me in every way he could be, even gluing up my eye every night so I could sleep, did his best to comfort me. But there weren’t any magic words to make it better, I just had to endure it.

  The Year 10 formal was another especially unpleasant time. At that age people didn’t really go with dates, we all just went in groups. I was having a good time with my mates and we were passing round our phones, taking photos. When I got home it was a nasty shock to look at the pictures – the frozen face that stared back at me was so different to how I’d felt in the moment. I deleted all the ones with me in them.

  Ever since I’d first been diagnosed, Mum had been searching for any possible treatments. She wouldn’t accept the idea of sitting back and waiting to see what happened. She came upon someone who had also experienced the condition and had found that acupuncture really helped them. The next morning she made an appointment for me, though she stayed deliberately vague about the details knowing I would never have got in the car if I knew I was going off to have needles put in my face!

  The acupuncturist was kind and gentle and I agreed to go through with weekly treatments. I could see a slight improvement from week to week. Once a month we would take a comparison shot of my face and here we could definitely see the progress. By about halfway through Year 11 I stopped needing the eye drops. Things felt about 90 percent back to normal by then. There was a little further improvement, although I don’t feel I ever got back to 100 percent the way things were before. But compared to where I’d been, I was happy.

  I’d got a bench press for weightlifting for my 16th birthday, and now that my face was more or less back to normal I started using it in earnest. I felt like I had a lot of ground to make up for when it came to impressing girls. By the time I turned 18 I had my first serious girlfriend, a great girl called Josie, who was in the year below me. It lasted for seven months until I had to focus on my HSC exams.

  I know now that there are far, far worse things that can happen to 16-year-olds than to be hit with Bell’s palsy, although at the time it felt like a catastrophe. However, emerging on the other side of the experience, I realised that there were some good things that had come from it. For one, I had learned who my true friends were. For another, I had seen that no matter what happened, my family was there to listen and help. And most important of all, I’d learned that I was strong enough to get through this, and that meant I’d be strong enough to get through any other adversity that life had to throw at me.

  For a family as football-mad as ours, 2010 was a huge year – it was World Cup time, and that only comes around every four years. It’s always good to see Australia in there giving it a go, but this time they didn’t make it out of the group stage. That was okay, though, because we had Spain to cheer on. They went into the tournament on a high as European champions and, after a wobbly start, kept winning and winning. Pretty much the whole extended family – all Dad’s siblings and their partners and kids – are as crazy about soccer as Dad and me, and as Spain progressed through the rounds we would watch the games in our own houses while keeping up a running commentary with one another by text.

  Our excitement built as Spain got closer to the end, and when they won their semi and scored a finals berth against the Netherlands, we wanted to do something really special to celebrate. So we organised for a big group trip to Sydney’s Darling Harbour, where the match would be broadcast live on a giant screen. As well as me and Dad, there were three of my uncles and their children: Uncle Luis and cousins Jessica, Mitchel and Lochlan; Uncle John (Juan) and cousins Oliver and Daniel; and Uncle Emilio and cousins Matt and Christopher.

  Because the competition was being held in South Africa it wouldn’t start until 4.30 am, Sydney time, but a whole series of FIFA Fan Fest activities had been organised to occupy the hours leading up to it. We’d registered to play in a five-a-side soccer tournament and there were so many of us we fielded two teams and got to play against each other. I was on a team with Mitchel and Lochlan and the younger kids, going against the adults and older cousins. We substituted players every five minutes, so everyone got a go. It was all in good fun, although we kids were keen to win and get bragging rights over the men.

  Mitchel, 12, was our goalie and he made some great saves, helping us to clinch victory. He was a joyous, lovable kid with a contagious smile, always wanting to make other people laugh. When the organisers of the game asked us to send someone up to be interviewed, we all voted for him to go.

  Mitchel loved everything about that night in Darling Harbour. He loved seeing himself on the big screen. He loved helping his team win. He loved getting to stay up all night in such a great party atmosphere and, of course, he loved watching Spain score the first goal in the match, after 117 nail-biting minutes, and like the rest of us Carrascos, he loved watching them being declared World
Cup champions minutes later when the Netherlands were unable to equalise. We went absolutely wild. We yelled ‘Viva España!’ and ‘Olé, Olé, Olé!’, and we were interviewed as a big group for a morning television show. It was an amazing, unforgettable experience made so much richer by being together as a family. Afterwards Mitchel told his mother, Kylie, that it had been the best night of his life.

  Less than three months later Mitchel was gone, dying suddenly while playing soccer that September. It was a huge, tragic shock to all of us in his family and, in fact, to the whole community. The game he was playing was just one of many happening that night and there were more than 400 children and parents present. In the same way that my dad coached my team, Mitchel’s dad, Luis, had coached his team since Mitchel started playing at age four. Luis was coaching, and Kylie and Lochlan and Jessica were there too. Out of nowhere, mid-run, Mitchel just fell to the ground. Luis went over to him and saw straight away his son was struggling to breathe. Something was terribly wrong. He called out for help and an off-duty firefighter who was there as a spectator and another parent who was trained in CPR responded.

  The leisure centre adjacent to the soccer fields had a defibrillator and, with an ambulance on its way, those two good men tried a number of times to revive Mitchel as poor Kylie, Luis, Lochlan and Jessica and the extended family members watched desperately. But it was clear Mitchel was beyond help. We found out later he’d had a rare congenital heart condition that no-one knew about, with no warning signs before his fatal collapse.