Scanning the internet this week it’s been hard to avoid the story of Brittany Maynard who chose to take her own life rather than wait for her terminal brain cancer to take it for her. It’s an issue many people feel passionately about one way or the other. For me, it wasn’t Brittany’s story that stirred up emotions, it was the one about a man who was diagnosed with the ‘same’ brain cancer but had gone on to live for another 13 years.
His story is one of many constantly rolled out by the media, the so-called ‘feel good’ stories about people who have defied the odds. You know the ones – the stories about people given 3 months to live who are now perfectly fine, the ones about children who tube fed and can now miraculously eat, or ones about people who were told they would never be able to walk again and now they can. These stories make me so angry and not for the reason you probably think.
I have no malice or jealousy towards these people. In fact, I’m happy for them and their families. What gets my blood boiling is the myths that these stories continue to perpetuate in society:
If it sounds the same, it is the same
I remember when Aidan was born at 26 weeks gestation. It seemed nearly everyone had a story about a premmie baby who was now perfectly fine and 6ft tall (for some reason they were all 6ft tall). They never knew how many weeks gestation the baby was or how big the baby was at birth only that they were fine now.
In the same way, this man may well have the same type of cancer as Brittany Maynard but it’s not the same cancer. It’s not the same size, not in the exact same location, and doesn’t respond to treatment in exactly the same way. Without a full knowledge of someone’s medical history there is no way to compare or judge. All it does is undermine the seriousness of a person’s situation.
There’s always hope
Call me a pessimist but I never let myself believe that there would be a cure for Pearson Syndrome in Aidan’s lifetime. I could hope that Aidan would not suffer or that he would live for longer than expected but I could never hope that he would survive. I’m sure other people will disagree with me strongly about his but I believe there’s a fine line between hope and denial and I learnt never to cross over it.
Doctors don’t know what they’re talking about There’s a general consensus out there that if a doctor says you have 6 months to live, they must be stupid and it’s your job to prove them wrong. I know from experience that few doctors will ever give a patient a definitive timeframe, simply because they themselves don’t know the answer. They may say ‘there’s a good chance you won’t be alive in three months’ time’ (usually on the insistence of the person or family to put a number on it) but believe me, they would be thrilled if you lived longer. Doctors don’t tell people they have a terminal illness willy-nilly.
You have the power to change the outcome. This is one that annoys me most. Often well-meaning people will tell you stories of people who turned to God or became a Buddhist monk and they were cured or of people who ate only organic food and rid themselves of breast cancer. While the intention is to provide hope (for you or themselves I can’t be sure), the reality is that it leaves you feeling responsible for your fate. The presumption is that if you prayed more, worked harder, drank herbal teas, did more therapies, etc, etc the illness or disability would go away. I’m telling you from experience, it’s not that easy. In the years since Aidan was diagnosed I have seen many children pass away from Pearson Syndrome – some as young as 5 months, others who are 7 or 8. They all receive the best of care, are loved whole heartedly by their families and undergo almost identical treatments. Why some survive and others don’t is one of life’s greatest mysteries. And has nothing to do with what their families did or didn’t do.
People are cured all the time
These types of stories are trotted out so frequently it’s easy to assume that miracles happen on a daily basis. The reality is very different. These stories make the media because they are so rare. Of all the terminally children I have known in my life, I know of only one miraculous cure. Yes it happens, but not often and for reasons which none of us on earth are privy to.
I know many people love these stories of survival and I understand the reasons why. Just please, please don’t tell me about them. It’s the last thing I want to hear.