So it was for Nathan Charles, the only person with cystic fibrosis ever to play a contact sport at an elite level. His whole life has been about taking precautions and diminishing risk. Today, upon arriving at Sydney’s Henson Park for a photo shoot with Men’s Health he extends his hand unguardedly. But there was a time when Charles didn’t like to shake hands at all. Instead he fist bumped or just nodded.
He didn’t share drink bottles with his teammates, either. Again, too risky. He had too much at stake, too much to lose. It wasn’t just the chance he’d pick up a cold or the flu. It was that a virus could weaken his immune system, opening the door for his underlying staph infection to wreak havoc upon his respiratory system. That could put him in hospital for weeks. Charles could handle that. He’s put up with it his whole life. What he couldn’t handle was that the illness would hurt his rugby career. He’d fought too hard and overcome too much to do anything that might jeopardise that.
“I always had the belief that I was, I wouldn’t say destined, but that this is what I was going to do and I wasn’t going to take nofor an answer,” he says of his dream of playing professional rugby, as we chat in Henson Park’s lone grandstand under the roar of passing jumbo jets. “Ever since I could talk I wanted to be a Wallaby. It was never a sense of entitlement. It was just more of a belief that if you want something bad enough you won’t let anything get in your way. The only thing stopping you is yourself.”
You’ve probably heard athletes, entrepreneurs or motivational speakers say something similar in the past. The difference with Charles is that it isn’t a hollow aphorism. In cystic fibrosis he had an obstacle that traditionally shrinks your opportunities in life. Charles wouldn’t let it. “He seems to have defied science and defied logic,” former Wallabies coach Ewen McKenzie once said of him.
If that makes him sound like a freak, then so be it. The fact is, that’s perhaps the most apt way to describe a man who won’t stop chasing a goal everyone thinks is beyond him.
Charles retired from professional rugby in August last year after a career in which he played 85 Super Rugby games for the Western Force and Melbourne Rebels and earned four Wallabies caps. Injuries and selection decisions cut short his national career – he ripped his pec from the bone in his last game as a Wallaby. In assessing his career, the temptation is to look at Charles’ record through the prism of his condition. But Charles would prefer that you evaluate his achievements on their merits, as you would any other player. If you do that then his childhood dream has truly been fulfilled.
Charles was diagnosed with CF at three months old. His parents were told he might not live to 10. In those days the average life expectancy for CF was 17. Today it’s 37. Charles is 30. If that gives you the impression that he’s lived on borrowed time with a grim sentence hanging over his head, it shouldn’t.
Charles looks back on his childhood fondly. Growing up in Baulkham Hills before attending Knox Grammar School, his days were defined by sports, not his condition. At one stage he played League on Fridays and Union on Saturdays. “Any chance I could get I’d have a ball in my hand or I’d be running around with my mates,” he says.
His parents didn’t talk much about CF. That allowed him to grow up thinking he was normal. “I had no realisation of the seriousness of the condition and how it affected me,” Charles says. “We didn’t want people to look at me differently and to discriminate.”
There was just one problem: the condition was serious. Charles spent half an hour each morning and evening on a nebuliser, often in front of episodes of The Simpsons. He took up to 30 pills a day. Sound like a drag? Charles didn’t know any different. Still doesn’t. The first time he truly realised the gravity of his condition was when he went away to boarding school. “Then I was left to my own devices and I got a bit rebellious, probably didn’t care as much and started to get sick,” he says.
“That’s when I realised, ‘Oh, this is actually a bit serious. I better start looking after myself otherwise it might affect me and my rugby’.”
That’s what it always came back to with Charles: his rugby. The seed of his dream had been planted when he was four years old and went to a Harvey Norman store opening attended by Phil Kearns and a few other Wallabies. There was a hot dog eating contest. Charles ate his fill. “I was a little chubster so I probably knocked back a few,” he laughs. Kearns signed a Wallabies poster for him with the comment, “Nice hot dog eating”. Charles still has the poster. He and Kearns laugh about it.
It never occurred to Charles that CF might be an impediment to him realising his ambition. Ignorance wasn’t so much bliss as a platform for possibility. “I just never seriously looked at the outcomes for CF or the life expectancies,” he says. “I was so hellbent on achieving my goal that I just never saw anything getting in my way that I couldn’t overcome.”
Here’s the thing, though. CF was always there, a lurking, unpredictable menace that had the potential to booby-trap his progress. Consciously or not, that shaped Charles’ outlook, forging the type of mongrel mindset that distinguishes the most cold-blooded of athletes. Charles identifies strongly with former LA Lakers star Kobe Bryant and his famous ‘Mamba Mentality’. If you’re not familiar, it loosely translates to a ‘f*ck you attitude’ in which you are the antihero of your own story and your enemy – particularly inBryant’s case – is everyone. “That mentality resonates with me because you know what you’ve got to do to get there,” Charles says. “You’ve got to outwork everyone else.”
As you might expect, a man in possession of such singular focus has little time for sympathy. “I hate sob stories where it’s about, ‘Oh, it would be nice if he achieved something,’” Charles says. “No, bugger that. For me it was go out there, grab the world by the throat and show it who’s boss.”
BEAT THE ODDS
Whether you regard Charles as an outlier, a freak or merely exceptional is up to you. He’s certainly not typical of the approximately 3500 people in Australia who suffer from cystic fibrosis, our most common, lethal genetic disorder. People with CF develop an abnormal amount of mucus in the lungs, airways and the digestive system, resulting in recurrent infections that lead to irreversible damage. The gene that causes the condition was isolated in 1989.
“Because of what we’ve learned about the protein that’s created from that gene, we now have drugs that specifically target the abnormalities in that protein,” says professor Peter Middleton, director of the Cystic Fibrosis Centre at Westmead Hospital.
The vast majority of people with CF currently die of the condition. But that could change in the next five to ten years. “We’re not far off the position where people will die of other diseases,” says Middleton, who adds that his oldest patient recently died of senile dementia at 78, that was probably unrelated to CF.
In many ways people with CF could soon have a “cure” with the new drugs in development. “Do we have a cure for diabetes?” asks Middleton. “If you say that insulin allows people with diabetes to live a normal life, then the CF modulators being developed will probably do the same for cystic fibrosis.”
Charles lives with an underlying Staphylococcus infection. If he gets a virus, the staph can become more virulent. Many CF sufferers are “chronically colonised with Staphylococcus ,” Middleton says, “Others with Pseudomonas. Others aren’t colonised with anything”. But the risk of cross infection among people with CF remains high, which is why they’re advised not to have close interaction. “In the past they used to have camps where all the kids with CF would go and one kid would go in with bug A and kids that had never grown that bug would come back from the camp with it,” says Middleton.
In terms of playing an elite contact sport, the obstacles facing Charles have been formidable. “For him to manage his lungs, his disease and his muscles all at the same time makes it that much harder than anyone else trying to be a Wallaby,” Middleton says. “There are Olympic athletes with CF. The difference is that most athletes are not in full contact sports, where incredible strength and cardiorespiratory fitness are critical.”
And it’s Charles’ fitness that could prove his most important asset in facing the challenges the condition poses in the future. In that respect he’s no different to anyone else. “Without a doubt, the fitter someone is, the longer they live,” says Middleton. “Just like the general population.”
Even as he rose through the junior representative ranks Charles kept his condition secret from his teammates. Many of his fellow players at the Brumbies, where he was a member of the squad without playing a senior game, perhaps thought it strange that he hesitated to shake their hand or refused their offer of a swig of water from a drink bottle. Charles didn’t care. “I think they just thought I was weird,” he says.
Why didn’t he tell them? His answer strikes at the heart of his identity. “Because people can easily be defined by the obstacles or challenges they face,” he says. “I’m not the stereotype of someone with cystic fibrosis so I don’t want to be defined that way. It’s the whole judge a book by its cover thing. I wanted my cover to be the professional rugby player”.
Charles finally told his teammates in 2008. “I had this preso and I literally couldn’t get through the first sentence before I started choking up and crying in front of 35 blokes,” he recalls. “I think it affected me more than I could have ever imagined. I only ever wanted these guys to respect me for the man and the player I was and nothing else.”
His teammates’ response couldn’t have been more encouraging. “A lot of them came up to me and said, ‘Mate, whatever we can do to support you, let us know’. But it was back to getting my head shoved in the dirt the next day.”
Charles’ resistance to being defined as a CF sufferer who plays rugby had seen him turn down an approach to become the national CF ambassador, also in 2008. At the time he wasn’t ready to face up to his illness and the responsibility the position would involve. But the bigger factor? That was simple. He hadn’t yet achieved his dream.
“I hadn’t achieved my goal of playing Super Rugby,” says Charles, who eventually took on the ambassador role in 2010. “I hadn’t achieved anything special yet so why would people think I’m any different? My thought was if I was to accept this role then I would be defined before I had achieved what was important to me.” If that were to happen the entire basis of Charles’ dream would have crumbled.
“My biggest fear was people going, ‘Oh it would be a good story if he made it’, instead of, ‘He earned it,’” he says. “To me, it’s very important in life that you earn what you have.”
A wider truth: a dream probably isn’t authentic if you don’t.
For more information on Nathan’s story go to nathancharles.com.au