Stephen Sutton has changed the rules on dealing with cancer
As I write, Stephen Sutton is adding to the £2m he has already raised for Teenage Cancer Trust. What he has achieved, while living with incurable cancer at the age of 19, is remarkable, but his attitude to it even more striking.
As someone who lives with cystic fibrosis (CF), an incurable, life-limiting illness, it is with great frustration that I see adverts such as the current Cancer Research UK's Race for Life, in which a personified cancer is told"we're coming to get you". If bravery is to "show cancer who's boss", then it is hard not to conclude that those who haven't been able to do so just didn't fight hard enough.
While I greatly admire the hard work these cancer charities do for those living with the condition, the language used around incurable illnesses saddens me. It's pervasive throughout society, not just in the third sector. It is rare indeed to find an article written about someone whose cancer has gone into remission and not find the phrase: "I've beaten cancer."
I often see similar words repeated within the CF community on social media, when the sad reality is that there is no known cure for CF. So why say such things? No doubt it helps some stay positive in the face of illness, but I worry that others secretly feel trapped by the modern narrative that illness must always be a battle that one wins or loses – and people repeat these phrases in order to feel supported by those around them.
Last year was the toughest of my life, as I waited for and recovered froma double lung transplant. Yet one of the worst aspects was the loneliness that comes with slowly dying while being surrounded by those who aren't. The distance it causes is immense without the pressure that society now creates in the expectation that we must never give up.
Stephen has shifted this narrative. While he chooses to use the language of fighting and battle, he also openly admits the seriousness of his condition. In an extraordinarily straight-forward but emotionalblogpost in January last year, he said: "I'm facing a very uncertain, and probably very limited, future. Originally all I ever wanted to do was study hard and make a difference to the world by becoming a doctor. However, in light of my current circumstances I have decided to be more pragmatic with my time."
This pragmatism is one that has opened up the choices he has given himself in the life he has left to live, as proven by his bucket list. And it's a message that fills me with more positivity than any attempt would at avoiding the reality of my health. I was incredibly lucky to receive my transplant, but it came with a new anxiety over my own life expectancy. Based on statistical averages I have about a 50% chance of living another five years, although I know of people in the same situation who have survived for much longer and others for much less. The phenomenal amount of money Stephen has raised will be transformational for the work the Teenage Cancer Trust can do, but for me personally, Stephen's legacy will be different. While the quantity of years I have ahead of me might not be exactly what I wish for, accepting this can bring a focus on achieving a better quality of life. As Stephen wrote on 21 April: "I don't really want to die, but hopefully my journey has influenced a lot of people for the better and taught people not to take life for granted."
If, at 19 years of age, Stephen can be brave enough to write about his impending death, then, as a society, we too should recognise we aren't showing weakness by talking about the fact that serious illnesses can't always be beaten. Stephen is proof that all our lives can make a positive impact. Strength and bravery comes from how you live, not from how long you are alive.
