How long are we ‘supposed’ to live for? ‘Three score and ten’ was a phrase I used to hear growing up (70 in new money). Our cultural ideas about life course and life span and who should die when are deeply ingrained. Parents should never bury their children, right? But what if you are born with or develop a condition which means that from a relatively young age your life span is destined to be much shorter than the norm and that without a dramatic medical breakthrough, very little will change that.
Boys (and it’s nearly always boys) diagnosed with Duchenne muscular dystrophy are one such group. Duchenne (or DMD) is an inherited neuromuscular disease and the average age of death used to be 19 but during the last few years, with significant improvements in the ways DMD is managed, has risen to around 27 years. There is currently no cure for DMD.
The Guardian recently reported on two fathers whose sons had been diagnosed with DMD. One, now rather famously, produced a poster for the Evening Standard with a controversial strapline – ‘I wish my son had cancer.’ Why? Because in the Dad’s words: “I felt a cancer diagnosis would have more options, more of a chance, a chance to try something – a chance that those with DMD still don’t have.”
In the second article, a father whose two sons had received a diagnosis of DMD decides he must cherish his ‘dying’ sons and ‘hold them close to my heart.’
Deep breath. I am not in any of these parents shoes. And I wonder for a moment what it is like to grow up as someone who is perceived to be dying all of their lives? Is it true that boys – and men – with DMD don’t have options or chances?
As a generation of adult men with DMD emerge their status as role models is so important. Pioneers like Jon Hastie and Carl Tilson – to name just two suggest that much is possible. Yes it happens within a different time frame. My question is: how can men with DMD can be supported to live full lives in the time that there is? How disabling might it be to live a life weighed down by the pressure associated with our ideas of what a ‘normal’ life span is? Look at the comments on the Guardian articles. Readers respond to a ‘tragedy’. You can’t lead a tragic life all your life – however long or short.
From our research at the School for Policy Studies we know that men with DMD don’t always get enough support to live the lives they want to. Whilst health and social care services need to up the ante it may be that our ideas about the length of a ‘good’ or ‘normal’ life need to change as well.